It is the holiday season, it is supposed to be the happiest time of the year. Right? Yet, there is a dark cloud hanging above our house this year. And weather, politics, money, or any of the other usual holiday depression makers are not the reason for that cloud. And that cloud fades my holiday spirit as it wilts and fades a holiday wreath.
As I told you in my last post, my second brother was dying from terminal cancer. As of now, he is still living and proving that he really is tough and strong, that his tough exterior is not just a show. But, the cancer is still there, hanging over my brother and his family this holiday like that dried up holiday wreath.
Plus, a week and a half ago, I had a colonoscopy and surgery to remove a polyp and a bad looking spot near my anus. The bad looking spot was removed and is located in a place where I am reminded of it through pain and blood every time I have a bowel movement. (I know, TMI) And sitting for long periods isn't too pleasant either. The bright spot, the polyp removed from my colon is not cancerous and the large spot removed from the outside is only precancerous. So for the moment, all is good in that neck of the woods. The ribbon on our wilting holiday wreath was still a bright shade of red.
But now another close family member has cancer. My sister-in-law just told us that she has terminal cancer. Hers is breast cancer that was somehow missed until now. It has spread to her liver and bones and she has begun chemotherapy in an effort to slow and perhaps stop the spread. She remains positive and her attitude is inspirational but still the cloud thickens. Now the holiday wreath has wilted and the red ribbon once again has faded along with our holiday spirit.
Two brothers and a sister-in-law all diagnosed with cancer within a year and a half? Plus my ongoing battle with anal cancer since 2004. I am finding optimism to be a difficult thing to find these days. Yet, I know there are people who are much worse off than we are. People who are born into extreme poverty, people who never know the feeling of love, people who face war and torture on a daily basis. People who lose loved ones die way before happy memories can be made. People who suffer and die from the very disease that I fight. People dying of disease without access to any medication or healthcare that I sometimes take for granted. People who have never known a happy holiday.
So I must concentrate on the positive. There is the fact I have been loved by my brothers and sister-in-law and I have loved them in return. I have known them, learned from them and shared wonderful times with them. I have been spoiled by their love and attention and I have seen the concern in their eyes and heard concern in their voices. I have so many fabulous memories of the happy times with them that I will share with anyone who will listen. I have been so very lucky to have had them in my life. And I remain lucky to have so many more fantastic and loving people still in my life.
So now, in spite of the cloud, in spite of the faded and wilted wreath, I will try to keep a bit of holiday spirit alive and try to share as much of it as I can. Because after all, this is the happiest time of the year. Right?
Sunday, December 20, 2015
Monday, November 23, 2015
I hate Cancer!
Cancer. A word everyone has heard in one way or another and many of us have had to deal with, either directly or through someone we know. It is a word that strikes fear in all of us, a word we never want to hear from our doctor. And yet, we all hear the word "cancer" so often that we can become dulled to the fear that stupid word can carry. That is until we hear it in our personal lives.
Two years after I was diagnosed with AIDS, in 2004, I was told that I needed to have surgery and biopsies to see if I had anal cancer. Sure enough, lots of precancerous areas and cells were found and removed. Since then I have had more than a dozen surgeries to remove the precancerous cells and abnormal anal tissue and to make sure the disease is not spreading or becoming invasive. It has been painful and debilitating, especially since I also suffer from chronic diarrhea. It is never pleasant but I deal with it. The surgeries are always better than the alternative. My next surgery happens to be next month. Yippee!
My really healthy husband has also had cancer, colon cancer. A spot was found during a routine colonoscopy. It was biopsied, found to be cancerous and removed. It was caught early and all cancer was removed without any problem. So far, his cancer has not returned. We are the lucky ones.
A little over a year ago, I was informed that one of my brothers, the fourth child out of five in our family, was in the hospital and was dying of lung cancer. Even though it was not a huge surprise, he smoked much of his life and did not take great care of himself, it was still difficult to go through the loss of a sibling when he was still relatively young. It was difficult to know he had to suffer and die from cancer. It was also difficult to know that his children and grandchildren had to suffer the loss of their father and grandfather. Cancer took him when he was too young to die.
Now, I have learned that a second brother is in the hospital, again dying of cancer. From what I understand, he has been given a couple of months to live. The cancer has spread throughout his body and is considered "incurable". This time it is more of a shock since this brother has taken care of his health and previous cancers have been found and been taken care of, various cancers he has fought since his childhood. It is a shock to know that a man so full of life and energy has to go through this awful thing, has to suffer and die from cancer. Again, it will be terribly difficult to know that his wife, son and his grandchildren (and the rest of us who know and love him) will be without him from this point on. And of course it is difficult to know that he will probably be the second of my mother's children to pass away before she does. How do you tell a mother with sever dementia that her middle child is dying, the second child in less than two years? Again, cancer is taking him from us too soon, he is much too young.
Cancer. I hate that word and all the questions that go with it. Will there ever be a cure? As long as someone is making huge profits from the treatment of cancer (or HIV/AIDS, diabetes, insert disease here) will anyone ever be allowed to find a cure? Someday, will we learn we do not have to fear that word? Someday, will there be a chance that cancer can be prevented? Cancer. Will the world ever forget there was such a thing?
I am saddened and shocked by the latest cancer news in my family. I am scared due to the fact I might have a higher risk of cancer because of HIV/AIDS. And I am angry that cancer exists at all and that a cure seems a lifetime away. And I am furious that cancer will take another person I have known all my life, a brother I have admired, respected and loved. A man who is a brother, a son, a husband and father, a grandfather, a friend and a neighbor. And I am pretty sure this will not be the last time I hear that word.
Cancer. I really HATE that word!!!
Two years after I was diagnosed with AIDS, in 2004, I was told that I needed to have surgery and biopsies to see if I had anal cancer. Sure enough, lots of precancerous areas and cells were found and removed. Since then I have had more than a dozen surgeries to remove the precancerous cells and abnormal anal tissue and to make sure the disease is not spreading or becoming invasive. It has been painful and debilitating, especially since I also suffer from chronic diarrhea. It is never pleasant but I deal with it. The surgeries are always better than the alternative. My next surgery happens to be next month. Yippee!
My really healthy husband has also had cancer, colon cancer. A spot was found during a routine colonoscopy. It was biopsied, found to be cancerous and removed. It was caught early and all cancer was removed without any problem. So far, his cancer has not returned. We are the lucky ones.
A little over a year ago, I was informed that one of my brothers, the fourth child out of five in our family, was in the hospital and was dying of lung cancer. Even though it was not a huge surprise, he smoked much of his life and did not take great care of himself, it was still difficult to go through the loss of a sibling when he was still relatively young. It was difficult to know he had to suffer and die from cancer. It was also difficult to know that his children and grandchildren had to suffer the loss of their father and grandfather. Cancer took him when he was too young to die.
Now, I have learned that a second brother is in the hospital, again dying of cancer. From what I understand, he has been given a couple of months to live. The cancer has spread throughout his body and is considered "incurable". This time it is more of a shock since this brother has taken care of his health and previous cancers have been found and been taken care of, various cancers he has fought since his childhood. It is a shock to know that a man so full of life and energy has to go through this awful thing, has to suffer and die from cancer. Again, it will be terribly difficult to know that his wife, son and his grandchildren (and the rest of us who know and love him) will be without him from this point on. And of course it is difficult to know that he will probably be the second of my mother's children to pass away before she does. How do you tell a mother with sever dementia that her middle child is dying, the second child in less than two years? Again, cancer is taking him from us too soon, he is much too young.
Cancer. I hate that word and all the questions that go with it. Will there ever be a cure? As long as someone is making huge profits from the treatment of cancer (or HIV/AIDS, diabetes, insert disease here) will anyone ever be allowed to find a cure? Someday, will we learn we do not have to fear that word? Someday, will there be a chance that cancer can be prevented? Cancer. Will the world ever forget there was such a thing?
I am saddened and shocked by the latest cancer news in my family. I am scared due to the fact I might have a higher risk of cancer because of HIV/AIDS. And I am angry that cancer exists at all and that a cure seems a lifetime away. And I am furious that cancer will take another person I have known all my life, a brother I have admired, respected and loved. A man who is a brother, a son, a husband and father, a grandfather, a friend and a neighbor. And I am pretty sure this will not be the last time I hear that word.
Cancer. I really HATE that word!!!
Monday, November 16, 2015
End of an Era or, It was Fun While It Lasted
From the middle of September to the middle of October, Jim and I went on another cruise adventure. We always have enjoyed traveling on cruise ships mainly because of the fact that our room travels with us. That way, if I am not feeling well or am exhausted, I can easily rest. An added bonus, watching the sea pass by and change every day is always relaxing and interesting. This last trip was different, in addition to the usual photos, memories, gifts and souvenirs, we brought home something that will probably change our travel from now on.
The cruise we were on was a repositioning cruise that would bring the ship from Europe to the US for the winter season. These types of cruises are favorites of ours because we not only see fantastic sights in Europe, we cross the Atlantic ocean. This cruise we traveled around the British Isles, cruised to the Azores then across the ocean to Florida. We saw so many wonderful things and we went to places I have always wanted to see. The first half of the trip was perfect.
Then things took a turn. It started with a shingles outbreak. I always can tell when I am about to get an outbreak of shingles, I have had enough to know. The shingles told me that my body was under stress. The stress turned out to be physical stress of trying to overcome an illness that was running through the passengers on the ship. I very quickly realized that I was very sick. I spent two sea days in bed, not eating and trying to sleep off my fever, coughing and congestion. I tried hard to get back to my friends and family who were traveling with us. As we crossed the ocean, I rested and took antibiotics to help me get well. But I didn't.
By the time we reached Florida I thought I was feeling better. The warm sunshine seemed to re-energize me. When we flew home, I thought I was over the bug that I caught weeks before. Then, within a couple of days of being home, I once again began feeling awful. I had a slight fever and no appetite. And worse, what ever this bug was, it began to travel from my lungs to my sinuses. After days of this, I went to a doctor who diagnosed a sinus infection and prescribed a strong course of antibiotics. These antibiotics may have fought the bug but they also caused the worst diarrhea I have ever had (and I have had a lot). And still I felt like crap (literally)... After I was done with the antibiotics I thought I was getting better. That was until my right ear plugged and I lost hearing. I went to an ENT who diagnosed an ear infection and because of the pressure in my ear, he poked a hole in my ear drum and sent me home with antibiotic ear drops. And still I didn't get well. Again I went to a doctor who again put me on antibiotics. This time, I started to feel better.
I had emailed my sister from the cruise on October 8th saying that I was sick. It is now over a month since that email. The bug seems finally to be losing it's grip but I am weak and always tired. I have lost over 10 pounds and all my energy plus I have lost the will to leave the house.
This was not the first time I have gotten sick on a long cruise. The stress of getting to the ship, being in a closed environment on an airplane, spending time with people who cough into their hands then refuse to wash them (proving that money does not buy class) and then the closed environment on the tour busses. All these things contribute to the risk of getting sick. And, because of my compromised immune system, I usually end up sick. This time however, the illness was the worst and I finally realized that this type of travel was not good for my health.
So, now I am still at home recovering and I wonder if travel will ever be an option for me. I will always be afraid of becoming ill and not being able to enjoy travel. And, of course, illness is not a souvenir I want ever again. I am depressed and sad, I am afraid and scared. I really want to see more of the world with the man I love and yet, is it worth my health? Will I spend the rest of my life at home, wishing I was traveling somewhere else? Maybe time will ease my fears and maybe not. For now, I have photos and memories and a wonderful man to share them with!
The cruise we were on was a repositioning cruise that would bring the ship from Europe to the US for the winter season. These types of cruises are favorites of ours because we not only see fantastic sights in Europe, we cross the Atlantic ocean. This cruise we traveled around the British Isles, cruised to the Azores then across the ocean to Florida. We saw so many wonderful things and we went to places I have always wanted to see. The first half of the trip was perfect.
Then things took a turn. It started with a shingles outbreak. I always can tell when I am about to get an outbreak of shingles, I have had enough to know. The shingles told me that my body was under stress. The stress turned out to be physical stress of trying to overcome an illness that was running through the passengers on the ship. I very quickly realized that I was very sick. I spent two sea days in bed, not eating and trying to sleep off my fever, coughing and congestion. I tried hard to get back to my friends and family who were traveling with us. As we crossed the ocean, I rested and took antibiotics to help me get well. But I didn't.
By the time we reached Florida I thought I was feeling better. The warm sunshine seemed to re-energize me. When we flew home, I thought I was over the bug that I caught weeks before. Then, within a couple of days of being home, I once again began feeling awful. I had a slight fever and no appetite. And worse, what ever this bug was, it began to travel from my lungs to my sinuses. After days of this, I went to a doctor who diagnosed a sinus infection and prescribed a strong course of antibiotics. These antibiotics may have fought the bug but they also caused the worst diarrhea I have ever had (and I have had a lot). And still I felt like crap (literally)... After I was done with the antibiotics I thought I was getting better. That was until my right ear plugged and I lost hearing. I went to an ENT who diagnosed an ear infection and because of the pressure in my ear, he poked a hole in my ear drum and sent me home with antibiotic ear drops. And still I didn't get well. Again I went to a doctor who again put me on antibiotics. This time, I started to feel better.
I had emailed my sister from the cruise on October 8th saying that I was sick. It is now over a month since that email. The bug seems finally to be losing it's grip but I am weak and always tired. I have lost over 10 pounds and all my energy plus I have lost the will to leave the house.
This was not the first time I have gotten sick on a long cruise. The stress of getting to the ship, being in a closed environment on an airplane, spending time with people who cough into their hands then refuse to wash them (proving that money does not buy class) and then the closed environment on the tour busses. All these things contribute to the risk of getting sick. And, because of my compromised immune system, I usually end up sick. This time however, the illness was the worst and I finally realized that this type of travel was not good for my health.
So, now I am still at home recovering and I wonder if travel will ever be an option for me. I will always be afraid of becoming ill and not being able to enjoy travel. And, of course, illness is not a souvenir I want ever again. I am depressed and sad, I am afraid and scared. I really want to see more of the world with the man I love and yet, is it worth my health? Will I spend the rest of my life at home, wishing I was traveling somewhere else? Maybe time will ease my fears and maybe not. For now, I have photos and memories and a wonderful man to share them with!
Monday, August 24, 2015
Would I, should I, if I could?
I am often asked if I wishd I could go back in time and change my diagnosis, become HIV free. If there was a time machine and I could go back to before I was infected with HIV and stop the infection or go back and be diagnosed before I went from HIV positive to having AIDS, would I? I have spent much time thinking about this and yet I cannot give a definite answer. Sometimes the answer is yes and sometimes, no. But since I have no access to a time machine, I guess I will never need to make that decision.
Of course, I would love to be healthy and strong. Yes, without pain and without all the health issues that have come with my AIDS diagnosis would be wonderful. To continue to work in a job I loved, to travel without limitations and to not worry about having to take19 pills a day would be heaven for me and I am sure that Jim would prefer this life for us as well. To be healthy would be my best reason to go back and change my future. There have been many times when I didn't think I really wanted to go on with this life. There are times when death almost seems like a better option that living with the agony of AIDS.
Then I think about my life since my AIDS diagnosis. I have been honored to meet many wonderful and inspirational people. They have become friends who either are living with HIV, AIDS or work with those who are living with HIV. Every day I am inspired by the courage and strength of these people. And I realize that I am not alone, there are many of us throughout the country who deal with life and all the symptoms that HIV and AIDS brings. We live, we love, we work, we travel and most of all, we survive.
I also think often about the person I have become since my AIDS diagnosis. Since returning from the hospital in 2002 I have learned many important things. I have learned to listen to my body. I have learned to take care of myself. I have learned to fight for the things that matter the most in my life. I even fought my terminal shyness to become a public speaker and HIV prevention educator, speaking to young people and their parents about my life and how to prevent HIV. I learned to enjoy my life even with the hardships that AIDS brings. And when I am really down and depressed about my life, I have a large box filled with thank you cards and letters from students who listened to what I had to say and who learned that a life with HIV/AIDS is not easy and can be horrible. Reading the cards and letters gives me strength to carry on and to realize that my life with AIDS can be a teaching experience for others. The people who hear me speak can learn and can spread the knowledge of life with HIV and AIDS and how they can prevent that from happening to them.
Most of all, since my AIDS diagnosis, I have learned to be grateful for what I have and what I have accomplished. I have a beautiful home, I have family and friends who care about me. I have a cat who gives me purr therapy and makes me feel loved and warm. And most of all, I have a wonderful husband who cares deeply for me and our life together. Jim is my strength, my life and my love. He is my caretaker, my nurse and my pill reminder. He is my chauffer, my biggest fan and my best critic. He is the love of my life. And I think that even though our marriage is not absolutely perfect, we still disagree from time to time, we are stronger because of what we have been through together. It seems that my AIDS diagnosis made us stronger and we know that together, we can handle what ever life sends our direction.
So, if I could go back in time and change the circumstances that led to my HIV infection and the development of AIDS ravaging my body, would I? Good question. What do you think would be best for me? Would my life be better without AIDS? Would I be better off without the pain and suffering? Would my life be better because I was not infected with HIV? I can make guesses but I will never know. Unless, of course, you know someone with a time machine.
Of course, I would love to be healthy and strong. Yes, without pain and without all the health issues that have come with my AIDS diagnosis would be wonderful. To continue to work in a job I loved, to travel without limitations and to not worry about having to take19 pills a day would be heaven for me and I am sure that Jim would prefer this life for us as well. To be healthy would be my best reason to go back and change my future. There have been many times when I didn't think I really wanted to go on with this life. There are times when death almost seems like a better option that living with the agony of AIDS.
Then I think about my life since my AIDS diagnosis. I have been honored to meet many wonderful and inspirational people. They have become friends who either are living with HIV, AIDS or work with those who are living with HIV. Every day I am inspired by the courage and strength of these people. And I realize that I am not alone, there are many of us throughout the country who deal with life and all the symptoms that HIV and AIDS brings. We live, we love, we work, we travel and most of all, we survive.
I also think often about the person I have become since my AIDS diagnosis. Since returning from the hospital in 2002 I have learned many important things. I have learned to listen to my body. I have learned to take care of myself. I have learned to fight for the things that matter the most in my life. I even fought my terminal shyness to become a public speaker and HIV prevention educator, speaking to young people and their parents about my life and how to prevent HIV. I learned to enjoy my life even with the hardships that AIDS brings. And when I am really down and depressed about my life, I have a large box filled with thank you cards and letters from students who listened to what I had to say and who learned that a life with HIV/AIDS is not easy and can be horrible. Reading the cards and letters gives me strength to carry on and to realize that my life with AIDS can be a teaching experience for others. The people who hear me speak can learn and can spread the knowledge of life with HIV and AIDS and how they can prevent that from happening to them.
Most of all, since my AIDS diagnosis, I have learned to be grateful for what I have and what I have accomplished. I have a beautiful home, I have family and friends who care about me. I have a cat who gives me purr therapy and makes me feel loved and warm. And most of all, I have a wonderful husband who cares deeply for me and our life together. Jim is my strength, my life and my love. He is my caretaker, my nurse and my pill reminder. He is my chauffer, my biggest fan and my best critic. He is the love of my life. And I think that even though our marriage is not absolutely perfect, we still disagree from time to time, we are stronger because of what we have been through together. It seems that my AIDS diagnosis made us stronger and we know that together, we can handle what ever life sends our direction.
So, if I could go back in time and change the circumstances that led to my HIV infection and the development of AIDS ravaging my body, would I? Good question. What do you think would be best for me? Would my life be better without AIDS? Would I be better off without the pain and suffering? Would my life be better because I was not infected with HIV? I can make guesses but I will never know. Unless, of course, you know someone with a time machine.
What do you think?!?
Tuesday, July 28, 2015
The wall that will NOT move...
One year ago I had really high (no pun intended) hopes for the new law that would help Minnesotans like me obtain Medical Cannabis. I had been accepted to the Governor's Task Force on Medical Cannabis Research and was really looking forward to July 1st, 2015 when I would be able to purchase Medical Cannabis that might help ease my pain, help me sleep and maybe slow my neuropathy. Boy, was I sold a bill of goods...
Since the beginning of June this year I have been banging my head against a solid brick wall that is made up of my medical providers, the misconceptions and misinformation that surround Medical Cannabis and the way the Minnesota law was written. I have been asking, pleading and trying everything I can think of and still, my head aches and the wall has not moved. I was quoted in an article in the Minneapolis Star Tribune (http://www.startribune.com/medical-marijuana-now-legal-in-minnesota/311315151/ ) and was interviewed by Angela Davis on the WCCO 6:00 news (http://minnesota.cbslocal.com/2015/07/02/an-architect-of-medical-marijuana-law-upset-he-cant-use-it/ ). And still I cannot get the Medical Cannabis that might help me to live a better life.
I saw my Infectious Disease doctor at HealthPartners on Tuesday, July 14th. His response to my question about obtaining certification for Medical Cannabis from him was “No”. He said, “HealthPartners’ involvement in the MN Medical Cannabis Program will be reviewed in the future. At this time, HealthPartners Infectious Disease providers will not be enrolling in the Minnesota State Medical Marijuana Program. This decision may be reviewed in a year.” He did say that I was welcome to find another medical provider who was certifying patients but the only HIV clinic that he was aware of certifying patients in the area was HCMC. I have been with HealthPartners for over 20 years and with their Infectious Disease clinic since my AIDS diagnosis in 2002. I cannot change providers due to my state health plan coverage. I do not want to transfer my medical records. Also, I have no established relationship with the HCMC HIV clinic and it could take a year to establish a relationship before they might certify me. Finding another provider outside the HealthPartners system is not an option for me. My doctor did say that there are a few doctors in other specialties in HealthPartners who are certifying patients and he would check to see if there were any with whom I had already established a relationship. So far, no answer back.
I had also contacted my pharmacy insurance provider just to see if there was a possibility of assistance with the high cost of Medical Cannabis, estimated to be $300 to $400 per month by my HealthPartners doctor. I received a letter from Navitus Health Solutions dated July 12, 2015 that clearly states that there would be no assistance provided. “This request has not been approved because this medication is a non-formulary medication and is not covered based on the Pharmacy and Therapeutics (P & T) Committee guidelines for the coverage of non-formulary medications.” They do give me the option to appeal their decision.
Also I received a letter from Minnesota Representative Susan Allen regarding an email I had sent to her about the problems obtaining certification for Medical Cannabis. Her response, while more positive than others, still leaves me without options for obtaining Medical Cannabis in the near future. These problems as stated above “…are all shortcomings that the legislature has heard about as the program has been rolled out. There is no doubt that they need to be addressed. That said, like you, I know of no easy, short term fixes. It is clear that this is going to have to be an issue that the Legislature revisits next session.” She goes on to say, “For my part, I want to assure you that I understand the problems presented by the existing program and will seriously consider any measures to enhance its effectiveness that may come before me”. Again, nothing will happen to help me with my issues this year. I have NOT received any response from the state Senator I emailed.
So, basically, after the interviews and the waiting, getting my hopes up just to lose hope again, I am still not able to be certified for Medical Cannabis. Even after working hard on the Governor’s Task Force on Medical Cannabis Therapeutic Research since July 31, 2014, I am still unable to receive Medical Cannabis which became available on July 1, 2015 to other Minnesotans in need. So far, no happy news for me, no miracles, no relief from symptoms of having AIDS and no end in sight. And the wall is still not moving!
Tuesday, June 30, 2015
From Total Happiness to Mad as Hell
Well, as most everyone knows, last Friday the Supreme Court of the United States passed a ruling that allows GLTB marriage in all 50 states. The joy I felt was overwhelming and the tears of happiness flowed freely. Pride weekend in Loring Park was especially sweet this year as we celebrated with thousands of like minded people. Now that the fight for marriage equality is over, my thoughts turn to other matters and my joy has turned to anger. Let me explain...
Tomorrow, July 1st, marks the start of the legal distribution of medical cannabis in Minnesota. I was proud to have pushed for the law allowing the sale of medical cannabis in Minnesota and I had been proud to sit on the Governor's Task Force. I thought that perhaps I could make a difference with this law in the lives of many Minnesotans including those of us with HIV and AIDS. It now seems that I was totally wrong, at least for many of us.
Since the start of June, I have been trying to get my medical team to certify me so that I would be eligible to legally obtain medical cannabis when distribution began on July 1st. I finally got an answer last week from my medical team that no doctor in my clinic and no doctor in my medical group was going to certifying patients for the cannabis. I was told I could find a doctor outside my clinic that might certify me but that would require a period to build a "relationship" with the new doctor that could be 6 months or up to a year. Add to that the fact that I have been part of the same HMO for over 20 years and they have all my records plus I have already established very good "relationships" with the medical team there, and you can see why moving to another clinic and another doctor is not in my best interest. Especially because I have always been told that a person with a disease such as AIDS should have continuity of care and changing doctors and clinics midstream does not help at all with that. Then there is the not so small issue of my health insurance. Would it cover a new doctor in a new clinic? And don't get me started when it comes to the cost. Even if I get certified, will I be able to afford the cost of the cannabis?
I hear on the news that there are some who's children suffer from severe epilepsy who are all ready to pick up the cannabis tomorrow morning. And I read in the paper that the law enforcement is worried that people using medical cannabis will be "driving under the influence". I am happy that some who need the cannabis are able to get it but I am angry that others, like me, are not. As far as the driving under the influence, is driving while taking Vicodin for my chronic pain any better? It is legal and I do take it when the pain is not helped with other less addictive medications. Is driving while taking tincture of opium better? I do take that occasionally for my chronic diarrhea when nothing else will work. And how many children with epilepsy are going to be driving cars? I am still waiting for more information from my medical team and I am still waiting for an answer to an email written to a certain state Senator. Since tomorrow is July 1st, I know that I will not hear back with any helpful answers in time to be certified soon.
So, here is sit, on the last day of June and I am not certified for medical cannabis and probably will not be for some time to come. I worked to get this stupid law passed and I worked to make sure all those who needed it would be able to get it and I am one who can't. I am pissed off, I am mad as hell! I am almost to the point that I will go out to the street and find a dealer who can meet my needs! Let me tell you, if I could pack up and move to Colorado or to Washington state right now, I would, without hesitation! Minnesota is really pissing me off! Stay tuned to this space for more to come.......
Tomorrow, July 1st, marks the start of the legal distribution of medical cannabis in Minnesota. I was proud to have pushed for the law allowing the sale of medical cannabis in Minnesota and I had been proud to sit on the Governor's Task Force. I thought that perhaps I could make a difference with this law in the lives of many Minnesotans including those of us with HIV and AIDS. It now seems that I was totally wrong, at least for many of us.
Since the start of June, I have been trying to get my medical team to certify me so that I would be eligible to legally obtain medical cannabis when distribution began on July 1st. I finally got an answer last week from my medical team that no doctor in my clinic and no doctor in my medical group was going to certifying patients for the cannabis. I was told I could find a doctor outside my clinic that might certify me but that would require a period to build a "relationship" with the new doctor that could be 6 months or up to a year. Add to that the fact that I have been part of the same HMO for over 20 years and they have all my records plus I have already established very good "relationships" with the medical team there, and you can see why moving to another clinic and another doctor is not in my best interest. Especially because I have always been told that a person with a disease such as AIDS should have continuity of care and changing doctors and clinics midstream does not help at all with that. Then there is the not so small issue of my health insurance. Would it cover a new doctor in a new clinic? And don't get me started when it comes to the cost. Even if I get certified, will I be able to afford the cost of the cannabis?
I hear on the news that there are some who's children suffer from severe epilepsy who are all ready to pick up the cannabis tomorrow morning. And I read in the paper that the law enforcement is worried that people using medical cannabis will be "driving under the influence". I am happy that some who need the cannabis are able to get it but I am angry that others, like me, are not. As far as the driving under the influence, is driving while taking Vicodin for my chronic pain any better? It is legal and I do take it when the pain is not helped with other less addictive medications. Is driving while taking tincture of opium better? I do take that occasionally for my chronic diarrhea when nothing else will work. And how many children with epilepsy are going to be driving cars? I am still waiting for more information from my medical team and I am still waiting for an answer to an email written to a certain state Senator. Since tomorrow is July 1st, I know that I will not hear back with any helpful answers in time to be certified soon.
So, here is sit, on the last day of June and I am not certified for medical cannabis and probably will not be for some time to come. I worked to get this stupid law passed and I worked to make sure all those who needed it would be able to get it and I am one who can't. I am pissed off, I am mad as hell! I am almost to the point that I will go out to the street and find a dealer who can meet my needs! Let me tell you, if I could pack up and move to Colorado or to Washington state right now, I would, without hesitation! Minnesota is really pissing me off! Stay tuned to this space for more to come.......
Wednesday, June 17, 2015
The Love and Pride Of a Father
As Father's Day approaches, my thoughts turn to my father who died 20 years ago in March. After all these years, I still miss my dad and I still have regrets about our relationship.
My dad was a very loving man although he was not always free at showing his feelings. At least not directly. He did often tell me of his love and showed his love as best he could. The last time I saw him, about a month before his death, he walked me to my car as I was leaving and there, on the street, he gave me a hug and thanked me for the visit. This was something he had never done. I was surprised but I welcomed the public show of affection. Little did I know that this would be the last time I would see him alive.
Dad would say that he loved me every once and a while and I always was surprised when did. He also would put his arm around my shoulders as a show of affection. He had various nicknames like "Old Chum", "M.S.D." (My Son Duane), etc. that he used often as terms of endearment. I knew that I was loved but it took years to realize how much.
The one thing I never heard from my dad was that he was proud of me. At least he never said those words directly to me. When dad died, I swore on his grave that I would live to make him proud because I still wanted to hear those words.
A few months after dad's death I watched a video that was taken at mom and dad's 50th anniversary celebration. As I watched, I realized something. Dad was often video taped talking about me. He was telling people of my accomplishments, where I was living and working and that I done a lot of the preparation and planning of the celebration and program for the anniversary celebration. In almost every scene of the video dad was telling people about me! It was then that I realized that he really was proud of me! I was shocked! Dad might have never said those exact words to me but here, on the video, was the proof I needed to see, he was proud of me and all I had accomplished. It was just that I would never hear him say those words, "Son, I am proud of you".
So, this Father's Day, if you are a father, tell your kids exactly how you feel. Tell them you love them AND that you are proud of them. And, if your father is still living, tell him exactly how you feel about him. Talk to him about his life and find out everything you can about his past. I wish that I had one more chance to talk to my dad and to tell him how much I love him and how proud I am to be his son. Although, maybe he has already heard me..... I know that I finally heard him!
My dad was a very loving man although he was not always free at showing his feelings. At least not directly. He did often tell me of his love and showed his love as best he could. The last time I saw him, about a month before his death, he walked me to my car as I was leaving and there, on the street, he gave me a hug and thanked me for the visit. This was something he had never done. I was surprised but I welcomed the public show of affection. Little did I know that this would be the last time I would see him alive.
Dad would say that he loved me every once and a while and I always was surprised when did. He also would put his arm around my shoulders as a show of affection. He had various nicknames like "Old Chum", "M.S.D." (My Son Duane), etc. that he used often as terms of endearment. I knew that I was loved but it took years to realize how much.
The one thing I never heard from my dad was that he was proud of me. At least he never said those words directly to me. When dad died, I swore on his grave that I would live to make him proud because I still wanted to hear those words.
A few months after dad's death I watched a video that was taken at mom and dad's 50th anniversary celebration. As I watched, I realized something. Dad was often video taped talking about me. He was telling people of my accomplishments, where I was living and working and that I done a lot of the preparation and planning of the celebration and program for the anniversary celebration. In almost every scene of the video dad was telling people about me! It was then that I realized that he really was proud of me! I was shocked! Dad might have never said those exact words to me but here, on the video, was the proof I needed to see, he was proud of me and all I had accomplished. It was just that I would never hear him say those words, "Son, I am proud of you".
So, this Father's Day, if you are a father, tell your kids exactly how you feel. Tell them you love them AND that you are proud of them. And, if your father is still living, tell him exactly how you feel about him. Talk to him about his life and find out everything you can about his past. I wish that I had one more chance to talk to my dad and to tell him how much I love him and how proud I am to be his son. Although, maybe he has already heard me..... I know that I finally heard him!
Happy Father's Day!
Monday, June 8, 2015
Ghosts or voices in my head? You decide...
I have often been asked about my beliefs when it comes to the "afterlife". Although I do not believe in a supreme being and a heaven or hell, I do believe that when the physical body dies, there is some sort of energy or spirit that does live on. Throughout my lifetime I have experienced different things that back up my beliefs.
I remember as a child that I had a friend who's name was Michael. Michael was invisible to everyone but me. He and I would chatter in our special language while coloring, playing or doing other activities during my day. Adults treated my friend Michael as my "imaginary friend" and that was it. Looking back I realize that he was more. For me, he was a spirit that watched over me and kept me company when I needed a companion. He stayed with me as I grew but our conversations slowly ended and he became just a shadow or presence over my shoulder. I still feel him with me today. I have never known who he was or why he has been with me but I think he watches over me and guides me as I live this life.
One of the strongest experiences was in Germany in the spring of 2001. Jim and I were visiting the part of Germany where the young Anne Frank's life came to an end at the Bergen-Belson Concentration Camp. We took a bus to the camp to visit and learn about that dark period of German History. We were there on a beautiful spring day filled with sunshine and woodland flowers. As we entered the camp I began to hear a voice whispering in my ear that said, "There were no birds singing then." Because of the beautiful spring day, wild birds sang in the woods surrounding the camp. Jim and I were at the camp for a number of hours walking through the graves and learning about what had happened there. We visited the marker for Anne and her sister who both died months before the camp was liberated. The entire time we were in the camp, the small voice repeated the phrase about the lack of birds singing then. As we prepared to leave, we visited the camps information center and I signed the guest book. I wrote, "Today the sun was shining and the birds were singing but there were no birds singing then". After we returned home to Minnesota we learned that there was a TV movie mini series called "Anne Frank, The Whole Story" that would air in about two weeks. I could not wait to see it. As we watched the final episode of the mini series that portrayed the last hours of Anne and her sister, Anne said to her sister, "Listen, do you hear the birds singing?". I felt a cold shiver as I heard those words. I suddenly knew why I had been hearing the words, "There were no birds singing then" when we had visited the camp. Anne had been sending me a message letting me know that she was there.
Besides Michael and Anne, I have experienced various spirits in various ways. I have heard screams coming from dungeons in old castles in Europe. I have heard the blood drip from ancient weapons on display in museums. And at home, I have met the woman living in our 110 year old house that we call the "Lady of the House".
The Lady of the House first introduced herself to us immediately after we moved in. As we looked on the ceiling of the guest bedroom, we noticed the outline of a woman in the cracks in the old plaster ceiling. The woman wore a large hat with feathers and was looking down over her shoulder. The outline looked like a woman from the turn of the 19th to 20th century. Often I would lay on the bed in the room and stare at the outline and think about a woman who might have lived in the house and I wondered if the creaks in the floor at night or the steps on the stairs were made by this woman. As we remodeled the house, the bedroom ceiling was torn down and replaced with a new one. As the workers removed the old plaster they found three magazines from 1907. On the back of two of the three magazines was an add and the add showed a close up of a woman wearing a large hat with feathers looking over her shoulder. It was exactly the outline that had been in the cracks in the ceiling. Seems the Lady of the House wanted to stay and make her presence known. And, even though the stairs were replaced with new ones, the steps continue and the creaks often wake me in the night. She lives on and watches over her home and those who live here.
And then there is my father. He died unexpectedly in March of 1995. Shortly after he died I had a dream, at least I think it was a dream. In the dream, I woke up and saw my dad sitting on the railing at the top of the stairs. When he noticed that I was looking at me he smiled. I got out of bed and walked towards him. As I got close, he grinned and spoke, "Hello Old Chum" he said,. "Old Chum" was one of his nicknames for me throughout my life. When he said that, I woke up in a sweat. I actually had to get up and out of bed to look to make sure he wasn't still sitting on the rail at the top of the stairs. Since then, although I do not see him except in my dreams, I do feel he is with me, watching over me and guiding me.
From Michael to The Lady of the House, from Anne Frank to my father, I know that I have been lucky to have seen and heard spirits that guide me and watch over me. And I know that I share this world with those who have passed onto the next part of life, the world of the spirits. And one day, I will walk in that world with them and hopefully, I will be able to whisper in the ears of the living and watch them as they travel this thing called life.
I remember as a child that I had a friend who's name was Michael. Michael was invisible to everyone but me. He and I would chatter in our special language while coloring, playing or doing other activities during my day. Adults treated my friend Michael as my "imaginary friend" and that was it. Looking back I realize that he was more. For me, he was a spirit that watched over me and kept me company when I needed a companion. He stayed with me as I grew but our conversations slowly ended and he became just a shadow or presence over my shoulder. I still feel him with me today. I have never known who he was or why he has been with me but I think he watches over me and guides me as I live this life.
One of the strongest experiences was in Germany in the spring of 2001. Jim and I were visiting the part of Germany where the young Anne Frank's life came to an end at the Bergen-Belson Concentration Camp. We took a bus to the camp to visit and learn about that dark period of German History. We were there on a beautiful spring day filled with sunshine and woodland flowers. As we entered the camp I began to hear a voice whispering in my ear that said, "There were no birds singing then." Because of the beautiful spring day, wild birds sang in the woods surrounding the camp. Jim and I were at the camp for a number of hours walking through the graves and learning about what had happened there. We visited the marker for Anne and her sister who both died months before the camp was liberated. The entire time we were in the camp, the small voice repeated the phrase about the lack of birds singing then. As we prepared to leave, we visited the camps information center and I signed the guest book. I wrote, "Today the sun was shining and the birds were singing but there were no birds singing then". After we returned home to Minnesota we learned that there was a TV movie mini series called "Anne Frank, The Whole Story" that would air in about two weeks. I could not wait to see it. As we watched the final episode of the mini series that portrayed the last hours of Anne and her sister, Anne said to her sister, "Listen, do you hear the birds singing?". I felt a cold shiver as I heard those words. I suddenly knew why I had been hearing the words, "There were no birds singing then" when we had visited the camp. Anne had been sending me a message letting me know that she was there.
Besides Michael and Anne, I have experienced various spirits in various ways. I have heard screams coming from dungeons in old castles in Europe. I have heard the blood drip from ancient weapons on display in museums. And at home, I have met the woman living in our 110 year old house that we call the "Lady of the House".
The Lady of the House first introduced herself to us immediately after we moved in. As we looked on the ceiling of the guest bedroom, we noticed the outline of a woman in the cracks in the old plaster ceiling. The woman wore a large hat with feathers and was looking down over her shoulder. The outline looked like a woman from the turn of the 19th to 20th century. Often I would lay on the bed in the room and stare at the outline and think about a woman who might have lived in the house and I wondered if the creaks in the floor at night or the steps on the stairs were made by this woman. As we remodeled the house, the bedroom ceiling was torn down and replaced with a new one. As the workers removed the old plaster they found three magazines from 1907. On the back of two of the three magazines was an add and the add showed a close up of a woman wearing a large hat with feathers looking over her shoulder. It was exactly the outline that had been in the cracks in the ceiling. Seems the Lady of the House wanted to stay and make her presence known. And, even though the stairs were replaced with new ones, the steps continue and the creaks often wake me in the night. She lives on and watches over her home and those who live here.
And then there is my father. He died unexpectedly in March of 1995. Shortly after he died I had a dream, at least I think it was a dream. In the dream, I woke up and saw my dad sitting on the railing at the top of the stairs. When he noticed that I was looking at me he smiled. I got out of bed and walked towards him. As I got close, he grinned and spoke, "Hello Old Chum" he said,. "Old Chum" was one of his nicknames for me throughout my life. When he said that, I woke up in a sweat. I actually had to get up and out of bed to look to make sure he wasn't still sitting on the rail at the top of the stairs. Since then, although I do not see him except in my dreams, I do feel he is with me, watching over me and guiding me.
From Michael to The Lady of the House, from Anne Frank to my father, I know that I have been lucky to have seen and heard spirits that guide me and watch over me. And I know that I share this world with those who have passed onto the next part of life, the world of the spirits. And one day, I will walk in that world with them and hopefully, I will be able to whisper in the ears of the living and watch them as they travel this thing called life.
Wednesday, June 3, 2015
Pride
June is the "Month of Pride" so I decided I should take a good look at my life and see if there was anything that I could say I was proud of. What I found was a bit overwhelming.
First, I am proud of where I came from. I was raised in a not too wealthy household, my parents both worked and bills were sometimes hard for them to pay. Still, I had what I needed to grow. I had three meals a day, all home made and nutritious. I had clothes on my back (sometimes "hand-me-downs" or from the local K-Mart and almost never fashionable) and a warm bed to sleep in. And most of all, I had a loving family that encouraged me, praised me when I deserved it and punished me when I deserved that too. I had parents that taught me right from wrong and did not judge me when I screwed up. They helped me to grow into an adult with good morals and values and the ability not to force my beliefs onto others. They taught me to have a strong will and that not being a sports jock was okay. They offered me the choice to learn music and science and they allowed me to have my menagerie of animals. And they were proud of who I grew to be. All in all, they made me the proud man I am today.
Second, I am proud of my relationship with my loving and supportive husband, Jim. Sometimes I am amazed at the fact that we have been together for 29 years and I know that often I take him for granted. Jim stood by my side through some really tough times and has always supported me in every way. I grew up with a dream of a "Prince Charming" and I found one in Jim. He rode in on a "dark and stormy night" and swept me off my feet to a life of love and commitment. When I nearly died, he was there to give me the strength to fight for life. And with my AIDS diagnosis, he never thought of leaving my side. In fact, we became closer and more supportive of each other. I am so proud of our path so far and look forward to the next 30 years together.
Third, I am proud of the family and friends who constantly offer their love and support. I have been so very lucky to have so many wonderful people in my life who do not judge me and who are there for me when I need them.
Lastly, I am a proud gay man. (There, I said it!) I grew up feeling alone, like I was the only one, afraid and not wanting to be myself. Then I realized that I needed to be exactly the person I was, in every way. I am proud of the work I have done to further marriage equality and overall acceptance of the GLBTQ community. I am also very proud of the work I have done with regards to ending the spread of HIV. Speaking to classes of teen-agers and not being the shy and introverted person I usually am is really something to be proud of. And I am especially proud of those people who have helped me with these causes.
Most of all, I am proud that I am no longer afraid to be who and what I am. A person who can stand and say with extreme PRIDE, "I am a married gay man who is also a long term survivor of AIDS!" And I am who I am because of all those who came before me and all those who helped me along the way.
First, I am proud of where I came from. I was raised in a not too wealthy household, my parents both worked and bills were sometimes hard for them to pay. Still, I had what I needed to grow. I had three meals a day, all home made and nutritious. I had clothes on my back (sometimes "hand-me-downs" or from the local K-Mart and almost never fashionable) and a warm bed to sleep in. And most of all, I had a loving family that encouraged me, praised me when I deserved it and punished me when I deserved that too. I had parents that taught me right from wrong and did not judge me when I screwed up. They helped me to grow into an adult with good morals and values and the ability not to force my beliefs onto others. They taught me to have a strong will and that not being a sports jock was okay. They offered me the choice to learn music and science and they allowed me to have my menagerie of animals. And they were proud of who I grew to be. All in all, they made me the proud man I am today.
Second, I am proud of my relationship with my loving and supportive husband, Jim. Sometimes I am amazed at the fact that we have been together for 29 years and I know that often I take him for granted. Jim stood by my side through some really tough times and has always supported me in every way. I grew up with a dream of a "Prince Charming" and I found one in Jim. He rode in on a "dark and stormy night" and swept me off my feet to a life of love and commitment. When I nearly died, he was there to give me the strength to fight for life. And with my AIDS diagnosis, he never thought of leaving my side. In fact, we became closer and more supportive of each other. I am so proud of our path so far and look forward to the next 30 years together.
Third, I am proud of the family and friends who constantly offer their love and support. I have been so very lucky to have so many wonderful people in my life who do not judge me and who are there for me when I need them.
Lastly, I am a proud gay man. (There, I said it!) I grew up feeling alone, like I was the only one, afraid and not wanting to be myself. Then I realized that I needed to be exactly the person I was, in every way. I am proud of the work I have done to further marriage equality and overall acceptance of the GLBTQ community. I am also very proud of the work I have done with regards to ending the spread of HIV. Speaking to classes of teen-agers and not being the shy and introverted person I usually am is really something to be proud of. And I am especially proud of those people who have helped me with these causes.
Most of all, I am proud that I am no longer afraid to be who and what I am. A person who can stand and say with extreme PRIDE, "I am a married gay man who is also a long term survivor of AIDS!" And I am who I am because of all those who came before me and all those who helped me along the way.
Happy Pride to one and all!
Tuesday, June 2, 2015
Old friends, New friends... They all make life worth living.
Ever meet someone and know instantly that you will become friends? Ever had a friend that you haven't seen for a long time but when you finally get together you can pick up just where you left off? Ever feel you are so lucky to have met some really wonderful friends that will care for you, support you and share in your life no matter what? Throughout my lifetime I have had friends like that, people that instantly became a lasting part of who I am and how I live.
One such friend, I will call her Sally, was my husband, Jim's, boss when we first moved to Minneapolis. Jim would often come home from work with stories about this woman and the fun they had working together. Finally, I met Sally and I felt an instant connection with her. It was almost like I had known her for a long time. Over the years, we got to know her well and she knew us. When my life was drastically changed by my illness and AIDS diagnosis, Sally was there to offer her love and support. When her life changed and she moved away, I wondered if we could still have a connection. I should not have worried. Even though miles separate us, we remain connected and I feel that our friendship has strengthened. Sometimes it is almost like we are spiritually connected and I often feel her near me when she is hundreds of miles away. We recently reunited and it seemed like we had never been apart. Of course email, snail mail and Facebook help to keep us connected.
Another dear friend, I'll call her Mindy, and I started working for the state at the same time. We immediately became friends. We seemed to share the same thoughts, the same outlooks. We both loved nature and animals. We came from different backgrounds but she was so much like the sister my age that I didn't have. When I was in the hospital she visited and offered her love and support. When I was home recovering, she kept me up to date on what was happening at work. When I returned to work, she was there to support me and help me as best as she could. And when Jim and I married in Vancouver, she baked a beautiful, huge and lavender colored wedding cake for our reception. Mindy and I stay in touch by email and Facebook and when we do get together (not often enough) for lunch or a day of antique shopping, we are like kids, laughing and sharing life like long lost siblings.
I also have friends from my childhood that I am now in touch with. Our lives went in totally different directions and we lost touch for years but yet when we reconnected, we were able to pick up and our friendships remained strong. It is amazing how joyful it is to reconnect with old friends.
And now Jim and I have made new friends, We have met some terrific people on our trips, people from all over the country and world. Once again, when we meet these people, it is as if we have known them for a long time. We try to be open and honest with our new friends from the beginning, letting them know about our relationship and about my AIDS diagnosis. And I have been amazed, our honesty only seems to strengthen our new friendships and often we find that we have more in common than we could have imagined, even with the straight couples we have met. And an added bonus, we are able to visit these new friends and get to know them even better. As far as I am concerned, there is nothing better than sharing fun times with good friends.
When I look at my life so far, I know that I have been so very lucky to have met many very wonderful and dear friends. They are like an extended family, the kind of family who loves us and supports us no matter what. And I know that I will continue make connections and friends as I travel through this life. And perhaps in my next life, we will all meet again!
One such friend, I will call her Sally, was my husband, Jim's, boss when we first moved to Minneapolis. Jim would often come home from work with stories about this woman and the fun they had working together. Finally, I met Sally and I felt an instant connection with her. It was almost like I had known her for a long time. Over the years, we got to know her well and she knew us. When my life was drastically changed by my illness and AIDS diagnosis, Sally was there to offer her love and support. When her life changed and she moved away, I wondered if we could still have a connection. I should not have worried. Even though miles separate us, we remain connected and I feel that our friendship has strengthened. Sometimes it is almost like we are spiritually connected and I often feel her near me when she is hundreds of miles away. We recently reunited and it seemed like we had never been apart. Of course email, snail mail and Facebook help to keep us connected.
Another dear friend, I'll call her Mindy, and I started working for the state at the same time. We immediately became friends. We seemed to share the same thoughts, the same outlooks. We both loved nature and animals. We came from different backgrounds but she was so much like the sister my age that I didn't have. When I was in the hospital she visited and offered her love and support. When I was home recovering, she kept me up to date on what was happening at work. When I returned to work, she was there to support me and help me as best as she could. And when Jim and I married in Vancouver, she baked a beautiful, huge and lavender colored wedding cake for our reception. Mindy and I stay in touch by email and Facebook and when we do get together (not often enough) for lunch or a day of antique shopping, we are like kids, laughing and sharing life like long lost siblings.
I also have friends from my childhood that I am now in touch with. Our lives went in totally different directions and we lost touch for years but yet when we reconnected, we were able to pick up and our friendships remained strong. It is amazing how joyful it is to reconnect with old friends.
And now Jim and I have made new friends, We have met some terrific people on our trips, people from all over the country and world. Once again, when we meet these people, it is as if we have known them for a long time. We try to be open and honest with our new friends from the beginning, letting them know about our relationship and about my AIDS diagnosis. And I have been amazed, our honesty only seems to strengthen our new friendships and often we find that we have more in common than we could have imagined, even with the straight couples we have met. And an added bonus, we are able to visit these new friends and get to know them even better. As far as I am concerned, there is nothing better than sharing fun times with good friends.
When I look at my life so far, I know that I have been so very lucky to have met many very wonderful and dear friends. They are like an extended family, the kind of family who loves us and supports us no matter what. And I know that I will continue make connections and friends as I travel through this life. And perhaps in my next life, we will all meet again!
Sunday, April 12, 2015
The last thing I ever thought I would be doing.....
About a year after my AIDS diagnosis I followed my doctor's recommendation and decided to join a fitness club and hire a personal trainer. The trainer who was assigned to me was a young woman who listened to my story and my reasons to get healthier and she gave me the instruction and encouragement to get moving and be a bit healthier than I had been. As we got to know each other I told her more about my AIDS diagnosis and my HIV infection. Her response was amazing! Instead of judgment, she informed me that she was a high school health teacher and she wondered if I would ever be interested in speaking to her classes. Because I am a total introvert and not exactly comfortable with public speaking, I was reluctant to say yes. Then I remembered someone that I had found as a total inspiration in my life.
I remembered when Jacob Wetterling first disappeared. His parents showed a strength I found to be amazing. As time went by and Jacob remained missing, his mother Patty became stronger and fought to help others with missing children. I realized that if I was faced with a life changing challenge, I would want to have the strength to change my tragedy into something beneficial. Now, I was faced with my life changing AIDS diagnosis. How could I make a change to help people. It seemed like the perfect opportunity was now being offered by the person who was making me run laps and do squats.
So, I agreed to talk to the students at St Louis Park High School. The first classes were nerve-racking and seemed to last forever. Still, the students were very attentive and asked interesting and thought provoking questions. As more classes went by, I realized that this was something I could do to help stop others from meeting the same fate that I had. As I did more and more, I developed a PowerPoint presentation to go with my talk. I was amazed at myself. The quiet, shy person I had always been was standing in front of a group of strangers, teen-agers at that, and telling them my personal life story. And they were listening! I had turned my awful life situation into something good. I really was making a difference!
The teachers at St Louis Park have the students write thank you cards after I have presented to their classes. Over the years I have kept all of the cards and read them when I am feeling down or am wondering why I keep going. They always cheer me up and give me the strength to keep going. The students hear exactly what I am telling them and many tell me that they will make changes, stay safe and get tested because of what they hear.
Four years ago I met a woman living with HIV who was also interested in speaking to students about her experience with HIV. When she heard that I was speaking at area high schools, she asked if she could come to listen. I asked her if she was interested in joining me speaking. She said yes and since then we have become a team. Out stories are totally different, she is a straight female with HIV while I am a gay male with AIDS. Her health has remained good, mine, not so much. I am much more of a "hard fact and statistics" kind of speaker while she shares more of the emotional side of HIV. Together, we are absolutely amazing if I do say so myself.
This past Wednesday evening we spoke to parents of the students at St Louis Park High School. Once again we were surprised at the reaction of our audience. They were attentive and seemed supportive. They listened and many were very vocally appreciative of what we were doing. And once again, our presentation made a difference.
So, I guess after all these years I have come to the conclusion that I really have done what I had admired in Patty Wetterling and others like her. I took my bad situation, my AIDS diagnosis, and turned it into something positive. And together with my co-speaker, the support of teachers like those at St Louis Park High School, the support and encouragement of friends and family and the love, support, encouragement and help from my wonderful husband, Jim, I will continue to speak to students, parents and anyone else who will listen about my life with HIV/AIDS and HIV Prevention. And as the years go by, I will continue to collect thank you cards from the students and read them from time to time when I need to give myself a positive boost. And who knows, maybe I will continue to reach the people who listen and they will make changes to prevent HIV.
I remembered when Jacob Wetterling first disappeared. His parents showed a strength I found to be amazing. As time went by and Jacob remained missing, his mother Patty became stronger and fought to help others with missing children. I realized that if I was faced with a life changing challenge, I would want to have the strength to change my tragedy into something beneficial. Now, I was faced with my life changing AIDS diagnosis. How could I make a change to help people. It seemed like the perfect opportunity was now being offered by the person who was making me run laps and do squats.
So, I agreed to talk to the students at St Louis Park High School. The first classes were nerve-racking and seemed to last forever. Still, the students were very attentive and asked interesting and thought provoking questions. As more classes went by, I realized that this was something I could do to help stop others from meeting the same fate that I had. As I did more and more, I developed a PowerPoint presentation to go with my talk. I was amazed at myself. The quiet, shy person I had always been was standing in front of a group of strangers, teen-agers at that, and telling them my personal life story. And they were listening! I had turned my awful life situation into something good. I really was making a difference!
The teachers at St Louis Park have the students write thank you cards after I have presented to their classes. Over the years I have kept all of the cards and read them when I am feeling down or am wondering why I keep going. They always cheer me up and give me the strength to keep going. The students hear exactly what I am telling them and many tell me that they will make changes, stay safe and get tested because of what they hear.
Four years ago I met a woman living with HIV who was also interested in speaking to students about her experience with HIV. When she heard that I was speaking at area high schools, she asked if she could come to listen. I asked her if she was interested in joining me speaking. She said yes and since then we have become a team. Out stories are totally different, she is a straight female with HIV while I am a gay male with AIDS. Her health has remained good, mine, not so much. I am much more of a "hard fact and statistics" kind of speaker while she shares more of the emotional side of HIV. Together, we are absolutely amazing if I do say so myself.
This past Wednesday evening we spoke to parents of the students at St Louis Park High School. Once again we were surprised at the reaction of our audience. They were attentive and seemed supportive. They listened and many were very vocally appreciative of what we were doing. And once again, our presentation made a difference.
So, I guess after all these years I have come to the conclusion that I really have done what I had admired in Patty Wetterling and others like her. I took my bad situation, my AIDS diagnosis, and turned it into something positive. And together with my co-speaker, the support of teachers like those at St Louis Park High School, the support and encouragement of friends and family and the love, support, encouragement and help from my wonderful husband, Jim, I will continue to speak to students, parents and anyone else who will listen about my life with HIV/AIDS and HIV Prevention. And as the years go by, I will continue to collect thank you cards from the students and read them from time to time when I need to give myself a positive boost. And who knows, maybe I will continue to reach the people who listen and they will make changes to prevent HIV.
Monday, April 6, 2015
I have been to the top of the mountain and looked to the other side
Lately I have been hearing a LOT about religion, especially the Christian religion. Partly because of the time of year (the Easter season) and partly about what has been happening in our country and the world when it comes to "religious freedom" and "persecution" of people because of various religions and certain political views. And because of these things and my opinions about them, I have been told (once again) that I need to "Find Jesus". (And I didn't know he was lost) So, I have decided that I really need to explain once and for all what I believe and why.
First of all, let me say that I absolutely do not believe in any "supreme being" or god. And I also feel no reason to believe in one.
I grew up in the Disciples of Christ, First Christian Church. As I grew to high school, the church became a very important part of my life. I grew socially and spiritually and began to discover that my future would be helping people. I finally decided that I would become a minister and so, with the help of our church's minister, I applied to the Culver Stockton College in Canton, Missouri to study ministry. My goal was to become a minister in Minnesota and help others in the ways of the church. After graduation from high school, I received an acceptance letter from Culver Stockton along with a notice of a full scholarship to the college. Then it was time to make a decision. And at almost exactly that time, the First Christian Church minister gave a sermon that helped me to start the hard decision making process.
The sermon was about homosexuality and the devil. In it, my minister said that gay people made the decision to be gay and that because of that decision gay people were going to hell if they did not change and ask god for forgiveness. I was crushed and terribly hurt by this sermon. Since I was in the process of coming to terms with who and what I was, hearing that I was going to hell unless I changed, this was very difficult for me to hear. I remember going home and deciding to study the bible and learn exactly what it said and what it meant to me. I spent weeks reading and studying everything I could about what the bible said and how it pertained to me and my life. The more I studied the more I realized that this was not the direction I wanted my life to go. I realized that the church was based on what others thought was right for everyone and that everyone should follow those teachings without question. Because I always question what I do not understand or do not agree with, I felt I could not join in and tell others to live a life that I myself did not believe in. So, after much studying and thought, I decided to turn down the invitation and scholarship to Culver Stockton College and see instead where life would take me. And the more I thought and the more I studied, the more I realized that I no longer felt the need to believe in a higher power, I only needed to believe in myself.
This belief was enforced years later in 2002 when I became ill and was near death in the hospital. As I lay in bed close to death I thought about life and what would happen after. I thought about how life was kind of like climbing a mountain and death was at the top of that mountain and what happens next was on the other side. As I climbed my mountain, I was responsible for what happened during the climb. My actions alone would determine the path I would take. Some paths would be steep and difficult to climb and other paths would follow a gentle slope. And the paths I chose would also affect the lives of those around me. If I believed I could make good things happen, I would do it. Most of all I realized that I did not need a supreme being to help me climb my mountain or choose my paths. I and I alone would find the way to make it to the top. As I was close to death, I realized that my climb could very easily be over, I could pass over the top and move down the other side to the valley that represented death. Or, I could fight and continue on with my life and find new paths toward the top. So, at that moment I made the decision to fight, to work to find the new paths to the top of my mountain and wait to look over into the other side of the mountain. Obviously I chose to fight, I made the decision to continue the climb. And I chose to climb with the love of my life at my side. And I think that Jim is happy with my decision at least most of the time.
I totally do understand and respect the fact that some people have the need to believe in a god or a supreme being and that is fine. I just do not appreciate it when those people feel the need to tell me what I should believe and that I am wrong if I do not believe as they do. I also absolutely HATE to be told that I am going to hell because of who I love, what I believe and how I live my life. I can climb my mountain just fine without help from religion.
So, I look for the best path to the top of my mountain and try hard to live a life that not only makes me happy but will guide the paths that others take on their personal mountains. I try hard to follow paths that do not harm those who know me and those who do not. And let me tell you, the view from my mountain just keeps getting better!
First of all, let me say that I absolutely do not believe in any "supreme being" or god. And I also feel no reason to believe in one.
I grew up in the Disciples of Christ, First Christian Church. As I grew to high school, the church became a very important part of my life. I grew socially and spiritually and began to discover that my future would be helping people. I finally decided that I would become a minister and so, with the help of our church's minister, I applied to the Culver Stockton College in Canton, Missouri to study ministry. My goal was to become a minister in Minnesota and help others in the ways of the church. After graduation from high school, I received an acceptance letter from Culver Stockton along with a notice of a full scholarship to the college. Then it was time to make a decision. And at almost exactly that time, the First Christian Church minister gave a sermon that helped me to start the hard decision making process.
The sermon was about homosexuality and the devil. In it, my minister said that gay people made the decision to be gay and that because of that decision gay people were going to hell if they did not change and ask god for forgiveness. I was crushed and terribly hurt by this sermon. Since I was in the process of coming to terms with who and what I was, hearing that I was going to hell unless I changed, this was very difficult for me to hear. I remember going home and deciding to study the bible and learn exactly what it said and what it meant to me. I spent weeks reading and studying everything I could about what the bible said and how it pertained to me and my life. The more I studied the more I realized that this was not the direction I wanted my life to go. I realized that the church was based on what others thought was right for everyone and that everyone should follow those teachings without question. Because I always question what I do not understand or do not agree with, I felt I could not join in and tell others to live a life that I myself did not believe in. So, after much studying and thought, I decided to turn down the invitation and scholarship to Culver Stockton College and see instead where life would take me. And the more I thought and the more I studied, the more I realized that I no longer felt the need to believe in a higher power, I only needed to believe in myself.
This belief was enforced years later in 2002 when I became ill and was near death in the hospital. As I lay in bed close to death I thought about life and what would happen after. I thought about how life was kind of like climbing a mountain and death was at the top of that mountain and what happens next was on the other side. As I climbed my mountain, I was responsible for what happened during the climb. My actions alone would determine the path I would take. Some paths would be steep and difficult to climb and other paths would follow a gentle slope. And the paths I chose would also affect the lives of those around me. If I believed I could make good things happen, I would do it. Most of all I realized that I did not need a supreme being to help me climb my mountain or choose my paths. I and I alone would find the way to make it to the top. As I was close to death, I realized that my climb could very easily be over, I could pass over the top and move down the other side to the valley that represented death. Or, I could fight and continue on with my life and find new paths toward the top. So, at that moment I made the decision to fight, to work to find the new paths to the top of my mountain and wait to look over into the other side of the mountain. Obviously I chose to fight, I made the decision to continue the climb. And I chose to climb with the love of my life at my side. And I think that Jim is happy with my decision at least most of the time.
I totally do understand and respect the fact that some people have the need to believe in a god or a supreme being and that is fine. I just do not appreciate it when those people feel the need to tell me what I should believe and that I am wrong if I do not believe as they do. I also absolutely HATE to be told that I am going to hell because of who I love, what I believe and how I live my life. I can climb my mountain just fine without help from religion.
So, I look for the best path to the top of my mountain and try hard to live a life that not only makes me happy but will guide the paths that others take on their personal mountains. I try hard to follow paths that do not harm those who know me and those who do not. And let me tell you, the view from my mountain just keeps getting better!
Tuesday, March 24, 2015
I am pissed and I can no longer be quiet!!!
Today I attended a meeting. I won't say where or much about what the meeting but one point made during the meeting left me pissed off. Usually I can internalize and not make a "big deal" about things that anger me but this time I feel a need to write about it and maybe in the process, get others to see my point of view and assist me with the issue.
It all started when the discussion at the meeting came around to getting more people interested in HIV and AIDS related activities, especially as it related to the AIDS Action Day at the Minnesota State Capitol. Getting people interested in attending events like this has been a problem ever since I first became active with the HIV Positive community. And as the years progressed, this problem has become MUCH worse. No one seems to care about HIV/AIDS related issues and about HIV prevention these days. They would rather wear a pink ribbon and talk about breast cancer (my apologies to anyone who has been affected by breast cancer in any way) than wear a red ribbon and talk about HIV/AIDS. I can totally understand that breast cancer is a terrible disease and that much more needs to be done to fight it but does it really deserve 99% more attention than HIV and AIDS?
34 years ago the first cases of HIV were found in Minnesota. At the end of 2013 there were a total of 301 new cases of HIV/AIDS diagnosed in Minnesota and it was estimated that another 1500 to 2000 people were living with HIV/AIDS in Minnesota and were not yet diagnosed. Since 1984, nearly 8000 people with HIV/AIDS in Minnesota have died and in 2013, 71 died. Why after 34 years are people still being infected with a virus that is TOTALLY PREVENTABLE?
One of the big reasons why no one will talk about HIV (in my humble opinion) is that the news media will not talk about it. You see adds on TV all year long for the breast cancer walks and fundraisers, there are news stories at least every other week about breast cancer and other forms of cancers but almost never do you hear anything about HIV. And at today's meeting I was reminded of one possible reason.
At the meeting while discussing how to get more people interested in and involved with the AIDS Action Day, I brought up the possibility of perhaps pushing for more media coverage of the event. In my 12 years of attending and working with AIDS Action Day and the Minnesota AIDS Walk, media coverage has dwindled from not a lot to absolutely nothing. I thought that perhaps if there was some sort of news coverage, there might be a renewed interest in HIV related causes and HIV prevention would again become a topic of conversation throughout the state. My idea was almost immediately shot down. It was discussed that perhaps we should wait until there was a "big" story before inviting news media instead of just talking about the problem of HIV in the state and the lack of HIV prevention education. It was also mentioned that maybe newer faces should be the ones who talk about the topic instead of those of us who have been doing this for years. One person jokingly said that maybe if I chained myself to the capitol building, I could get some media coverage on my own. And although I will do almost anything, I was NOT amused at that suggestion.
For 12 years, ever since my diagnosis, I have pushed, I have pleaded, been interviewed, I have put myself out there in schools with student HIV prevention education, I have gone to the state capitol and I have spoken to legislators again and again, I have begged and pleaded for money for the Minnesota AIDS Walk, I have made donations to the AIDS Walk and to the Red Ribbon Ride, I have written emails and letters to legislators and the local news media, all of these things and much, much more and still, HIV remains a big problem in Minnesota and throughout the US and world. And still, no one seems willing to talk about it and no one seems willing to get the media interested. Will those of us with HIV and AIDS have to start dying by the thousands again before our voices are heard?
Yes I am pissed and no, I have no answers on how to fix the problem. I guess I will continue to work as hard as I can to get the word out. I will continue to write, educate and scream and I will happily accept any and all help. I will try and try again and again to get the news media and the general public in Minnesota to once again talk about HIV and AIDS. And I will do all this until there are NO NEW CASES OF HIV DIAGNOSED IN MINNESOTA!!!
Even if I have to chain myself to the capitol building.... well, maybe not...
It all started when the discussion at the meeting came around to getting more people interested in HIV and AIDS related activities, especially as it related to the AIDS Action Day at the Minnesota State Capitol. Getting people interested in attending events like this has been a problem ever since I first became active with the HIV Positive community. And as the years progressed, this problem has become MUCH worse. No one seems to care about HIV/AIDS related issues and about HIV prevention these days. They would rather wear a pink ribbon and talk about breast cancer (my apologies to anyone who has been affected by breast cancer in any way) than wear a red ribbon and talk about HIV/AIDS. I can totally understand that breast cancer is a terrible disease and that much more needs to be done to fight it but does it really deserve 99% more attention than HIV and AIDS?
34 years ago the first cases of HIV were found in Minnesota. At the end of 2013 there were a total of 301 new cases of HIV/AIDS diagnosed in Minnesota and it was estimated that another 1500 to 2000 people were living with HIV/AIDS in Minnesota and were not yet diagnosed. Since 1984, nearly 8000 people with HIV/AIDS in Minnesota have died and in 2013, 71 died. Why after 34 years are people still being infected with a virus that is TOTALLY PREVENTABLE?
One of the big reasons why no one will talk about HIV (in my humble opinion) is that the news media will not talk about it. You see adds on TV all year long for the breast cancer walks and fundraisers, there are news stories at least every other week about breast cancer and other forms of cancers but almost never do you hear anything about HIV. And at today's meeting I was reminded of one possible reason.
At the meeting while discussing how to get more people interested in and involved with the AIDS Action Day, I brought up the possibility of perhaps pushing for more media coverage of the event. In my 12 years of attending and working with AIDS Action Day and the Minnesota AIDS Walk, media coverage has dwindled from not a lot to absolutely nothing. I thought that perhaps if there was some sort of news coverage, there might be a renewed interest in HIV related causes and HIV prevention would again become a topic of conversation throughout the state. My idea was almost immediately shot down. It was discussed that perhaps we should wait until there was a "big" story before inviting news media instead of just talking about the problem of HIV in the state and the lack of HIV prevention education. It was also mentioned that maybe newer faces should be the ones who talk about the topic instead of those of us who have been doing this for years. One person jokingly said that maybe if I chained myself to the capitol building, I could get some media coverage on my own. And although I will do almost anything, I was NOT amused at that suggestion.
For 12 years, ever since my diagnosis, I have pushed, I have pleaded, been interviewed, I have put myself out there in schools with student HIV prevention education, I have gone to the state capitol and I have spoken to legislators again and again, I have begged and pleaded for money for the Minnesota AIDS Walk, I have made donations to the AIDS Walk and to the Red Ribbon Ride, I have written emails and letters to legislators and the local news media, all of these things and much, much more and still, HIV remains a big problem in Minnesota and throughout the US and world. And still, no one seems willing to talk about it and no one seems willing to get the media interested. Will those of us with HIV and AIDS have to start dying by the thousands again before our voices are heard?
Yes I am pissed and no, I have no answers on how to fix the problem. I guess I will continue to work as hard as I can to get the word out. I will continue to write, educate and scream and I will happily accept any and all help. I will try and try again and again to get the news media and the general public in Minnesota to once again talk about HIV and AIDS. And I will do all this until there are NO NEW CASES OF HIV DIAGNOSED IN MINNESOTA!!!
Even if I have to chain myself to the capitol building.... well, maybe not...
Talking to students
These days one of the most satisfying things I do is speaking to students about HIV prevention using my story as an example of what can happen if they do not listen. The past few years I have had the honor of speaking with my dear friend Annie who's story is completely different from mine but equally as important. Together we tell about our lives as a gay man and a straight woman who happen to be living with HIV and AIDS.
As we enter the schools, both Annie and I have a simple goal, to reach the students and stop risky behavior that might lead to the transmission of HIV. We hope when we speak to each class we can reach and help at least one student in the class to change his or her behavior to stay "safe" from HIV. We also try hard to give important information that the class can use for further discussion when we leave, discussion with family, friends and classmates.
Recently we were reminded of why the discussion needs to happen after we leave the class. At one of the school where we speak, the health teacher told us of a student who's mother had pulled her daughter from class on the day we were speaking because she did not want her daughter exposed to HIV. She told the teacher that she knew that HIV was "highly contagious" and did not want her daughter to "catch it" from Annie and me. My first thought when I heard this was that this mother needed to be here in this class. My second thought, after over 30 years of HIV and people still have bad or no information about it. Yikes!!!
At one of the schools we do a "parent night" where we do our presentation for the parents of the school students. Last year we had scheduled a parent night and not one parent showed up. The teacher, Annie and I were all so very disappointed but not really surprised. These days parents are so busy that learning about HIV is not high on their to do list. They have to work, run their children to sporting events, music or dance lessons, etc. and they don't think too much about attending a class that their children already listened to. Still, we think it is very important that the parents hear what the students hear so that the conversation about HIV prevention can easily continue at home.
On Wednesday, April 8th at 7:00 to 8:30 in the evening, Annie and I will again try to speak to parents at the same school. We are hopeful that there will be at least a few parents in attendance. This year we will be teaming up with the school's new Sexual Health Education Club. This club will speak about what they do and what they hope to accomplish. Perhaps the parents will be interested and then will stay to hear Annie and me talk about our lives with HIV. We will see... Stay tuned...
And if you are interested in more information about the evening class, see below. I would love to see you there!
luskey.allison@slpschools.org pieper-berchem.amy@slpschools.org 952.928.6241 952.928.6136
As we enter the schools, both Annie and I have a simple goal, to reach the students and stop risky behavior that might lead to the transmission of HIV. We hope when we speak to each class we can reach and help at least one student in the class to change his or her behavior to stay "safe" from HIV. We also try hard to give important information that the class can use for further discussion when we leave, discussion with family, friends and classmates.
Recently we were reminded of why the discussion needs to happen after we leave the class. At one of the school where we speak, the health teacher told us of a student who's mother had pulled her daughter from class on the day we were speaking because she did not want her daughter exposed to HIV. She told the teacher that she knew that HIV was "highly contagious" and did not want her daughter to "catch it" from Annie and me. My first thought when I heard this was that this mother needed to be here in this class. My second thought, after over 30 years of HIV and people still have bad or no information about it. Yikes!!!
At one of the schools we do a "parent night" where we do our presentation for the parents of the school students. Last year we had scheduled a parent night and not one parent showed up. The teacher, Annie and I were all so very disappointed but not really surprised. These days parents are so busy that learning about HIV is not high on their to do list. They have to work, run their children to sporting events, music or dance lessons, etc. and they don't think too much about attending a class that their children already listened to. Still, we think it is very important that the parents hear what the students hear so that the conversation about HIV prevention can easily continue at home.
On Wednesday, April 8th at 7:00 to 8:30 in the evening, Annie and I will again try to speak to parents at the same school. We are hopeful that there will be at least a few parents in attendance. This year we will be teaming up with the school's new Sexual Health Education Club. This club will speak about what they do and what they hope to accomplish. Perhaps the parents will be interested and then will stay to hear Annie and me talk about our lives with HIV. We will see... Stay tuned...
And if you are interested in more information about the evening class, see below. I would love to see you there!
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Dear Parent or Guardian,
Our Embedded
Health program provides ongoing health education to students throughout all
four years of high school. In order to provide more information to families
about your son/daughter's health classes, we invite you to a Sexual Health Education Parent Night. While
we cover a variety of topics in classes (communication, mental health, drugs
& alcohol, physical wellness, CPR, and more) the focus of this particular
evening will pertain to sexual health. A Sexual Health Education Parent Night will
be offered every other year. We plan
to have another parent event next year featuring drug and alcohol education. It
is our hope to partner with you so that we can support conversations about
these topics at home.
The goal of
this parent night is to provide an opportunity to see what your son/daughter
experiences in health class. A majority of the time will be dedicated to
listening to an exact 11th grade health class presentation, called
“Living with HIV”. Students truly enjoyed the presentation and in the words of
one junior boy, “I realized that HIV is not something to mess around
with!”. We also discussed how to change
the stigma often associated with HIV.
Sexual
Health Education Parent Night
Wednesday, April 8, 2015
7:00 – 8:30 pm
Our agenda will include:
- Brief overview of how Embedded Health works & curriculum
- Hear from students in the newly created Sexual Health Education Club (SHEC)
- Feature presentation: “Living with HIV”; Red Cross certified guest speakers, Duane Bandel and Annie Elmer.
Parents of students in grades 9-12 are encouraged
to attend. We appreciate an email RSVP so that we have enough chairs set up,
but it is not required. We will also provide materials to take home to encourage dialogue
with your son/daughter. We hope you will join us!
Thank you,
Allison
Luskey Amy
Pieper-Berchem
Embedded
Health teacher Embedded
Health teacherluskey.allison@slpschools.org pieper-berchem.amy@slpschools.org 952.928.6241 952.928.6136
Saturday, February 7, 2015
“Behind every beautiful thing, there's some kind of pain.”
Pain. That is a word I live with every day. Physical, mental and emotional pain. At times making me feel like a little old man, crippling me and causing me to want to crawl into a warm bath and stay there until pain medications (or alcohol) take hold. At times causing me to feel like parts of my brain no longer exist and then there are the times when I just want to sit and cry.
The physical pain is all day every day. My body aches as from a flu, total body aches and pains. Muscles and joints sometimes scream with pain but mostly, there is just a dull ache. I can take strong medications to ease the pain but then they have side effects too numerous to mention. I can drink until I no longer feel but that causes problems too. I was having acupuncture done and that really did help ease the pain and relax the old muscles but my health plan in it's infinite wisdom said I wasn't progressing enough and stopped paying for the treatments. So, since my pain is not bad enough to give up, I stay strong and carry on.
The mental pain I suffer from is much deeper and this is not easily fixed. I constantly think about what my life would be like if I hadn't been exposed to a virus (HIV) that was easily preventable. Also, if only I had been tested much earlier and my body was not allowed to be damaged by the HIV and AIDS. What would my life be like if I had started HIV treatment when it was first available? Would the physical pain be less? Would I still be able to work full time and have a rewarding career? At times my head spins with "what if" scenarios until my brain wants to burst. And yet, no answers, I will never know "what if".
Then there is the emotional pain. I look at Jim and feel so terribly awful that I have caused him to suffer along with me. I know that when I am hurting, he is hurting. I see the pain in his eyes that look at me when I am in pain. I remember the pain I caused him when I was first diagnosed and was close to death. Then I look at my family and wonder if I didn't have AIDS, how would they feel about me. Would they have less pain if I did? And I look at where I might be and wonder what my life would be like and feel sad that I will never know.
All of these things, plus many others, cause me pain of every sort.
Still, having AIDS has changed me. The pain I endure has made me stronger that I ever thought possible. Before my diagnosis I used to be amazed at the people who took a horrible situation and made something positive with it. People who suffered a tragedy but instead of feeling sorry for themselves, people who were able to rise up and fight back. I admired those kinds of people. Now, the pain I have suffered because of HIV has caused me to become exactly that type of person. I work hard to educate the young so that they will never have to feel the pain that I do. I speak to my elected officials so that they know what HIV and AIDS does to cause pain and how they can help.
And so behind me, beautiful me, there is pain. And behind the new me, what I have become because of AIDS, there is pain.
The physical pain is all day every day. My body aches as from a flu, total body aches and pains. Muscles and joints sometimes scream with pain but mostly, there is just a dull ache. I can take strong medications to ease the pain but then they have side effects too numerous to mention. I can drink until I no longer feel but that causes problems too. I was having acupuncture done and that really did help ease the pain and relax the old muscles but my health plan in it's infinite wisdom said I wasn't progressing enough and stopped paying for the treatments. So, since my pain is not bad enough to give up, I stay strong and carry on.
The mental pain I suffer from is much deeper and this is not easily fixed. I constantly think about what my life would be like if I hadn't been exposed to a virus (HIV) that was easily preventable. Also, if only I had been tested much earlier and my body was not allowed to be damaged by the HIV and AIDS. What would my life be like if I had started HIV treatment when it was first available? Would the physical pain be less? Would I still be able to work full time and have a rewarding career? At times my head spins with "what if" scenarios until my brain wants to burst. And yet, no answers, I will never know "what if".
Then there is the emotional pain. I look at Jim and feel so terribly awful that I have caused him to suffer along with me. I know that when I am hurting, he is hurting. I see the pain in his eyes that look at me when I am in pain. I remember the pain I caused him when I was first diagnosed and was close to death. Then I look at my family and wonder if I didn't have AIDS, how would they feel about me. Would they have less pain if I did? And I look at where I might be and wonder what my life would be like and feel sad that I will never know.
All of these things, plus many others, cause me pain of every sort.
Still, having AIDS has changed me. The pain I endure has made me stronger that I ever thought possible. Before my diagnosis I used to be amazed at the people who took a horrible situation and made something positive with it. People who suffered a tragedy but instead of feeling sorry for themselves, people who were able to rise up and fight back. I admired those kinds of people. Now, the pain I have suffered because of HIV has caused me to become exactly that type of person. I work hard to educate the young so that they will never have to feel the pain that I do. I speak to my elected officials so that they know what HIV and AIDS does to cause pain and how they can help.
And so behind me, beautiful me, there is pain. And behind the new me, what I have become because of AIDS, there is pain.
Tuesday, February 3, 2015
When did you choose to be straight?
Once again I have been hearing about my "choice" to live the "gay lifestyle" so I thought I would spend a moment talking about when I "chose" to be gay. I feel it is important that everyone know when I "chose" to be gay so that the straight people who read this would think about when they "chose" to be straight.
I "chose" to be gay at age five. I remember the day very well, it was my very first day of kindergarten. There were two kindergarten teachers at Jefferson Elementary, one female and one male. The classrooms were across the hall from each other. My teacher was the female teacher. On our first day of class, both of the kindergarten classes got together for an orientation about our new school and we got to meet the other teacher in our grade. It was at that exact moment, the moment I first saw the male kindergarten teacher that I chose to be gay. I felt the first pangs of a student to teacher crush. He was tall, with brown hair and blue eyes and a smile that would melt the heart of any five year old. Throughout the year I would go out of my way to see that teacher and I would secretly wish that I could grow up and we would be married. I never told anyone about my feelings, I knew even then that no one would understand. In fact, to be totally honest, even I didn't understand my feelings. I just knew that I didn't like girls the way I liked boys.
As I went through elementary school, my feelings did not change. I knew that I had "chosen" to be gay and that was the way it was. I was picked on because I wasn't like the other boys, I was bullied and made fun of, I got into fights and did not have a lot of friends and all because at age five, I "chose" to be gay.
In sixth grade sex education class, I learned a word for my feelings, homosexuality. I learned that I might not be the only boy who had "chosen" to be gay. I was happy yet afraid that someone would find out so I kept my feelings locked deep down inside of me. I was alone and lonely all because at age five, I "chose" to be gay.
In junior high, I continued to have feelings for boys but because I knew what was expected of me, I dated girls and even shared my first kiss with a girl. (That didn't go well.) And yet, I looked at the boys around me. Was one of them feeling what I was feeling? Was one of my male classmates a homosexual too? And the bullying and feeling like an outcast got worse, all because at age five, I "chose" to be gay.
Senior high is supposed to be the best time of a young person's life. For me, it was not. I knew that I was different (gay) and I knew there had to be others but I felt so terribly alone. Again, I dated and had a girlfriend. We went to prom. We had fun but then people started asking if we would be the "high school sweethearts" that grew up, got married, moved to the house with the white picket fence, had two children and lived happily ever after. I knew that would never be my life because at age five I had "chosen" to be gay.
In college I again dated women and we had fun but once again, I knew that I was not like most of the others I palled around with. The only difference, the bullying decreased and I began to feel more like myself, the guy who at age five "chose" to be gay.
Then, in 1986, I met the man who changed my life and my perception of my life. I met the man that I eventually married. That man and I eventually moved into the house with the white picket fence. He is the man I chose to live the rest of my life with almost exactly 20 years after my first day in kindergarten, the day I "chose" to be gay. He and I will grow old (and better) together. Along the way he has helped me to finally realize that because at age five I "chose" to be gay, I made the choice to live my life openly and honestly. Openly and honestly as a happy gay man! And all because at age five, I "chose" to be gay.
So the next time you hear someone say that gay people "choose" the "gay lifestyle", please feel free to correct them and say, "No, they choose to be honest". And that is because you know someone who at age five "chose" to be gay.
I "chose" to be gay at age five. I remember the day very well, it was my very first day of kindergarten. There were two kindergarten teachers at Jefferson Elementary, one female and one male. The classrooms were across the hall from each other. My teacher was the female teacher. On our first day of class, both of the kindergarten classes got together for an orientation about our new school and we got to meet the other teacher in our grade. It was at that exact moment, the moment I first saw the male kindergarten teacher that I chose to be gay. I felt the first pangs of a student to teacher crush. He was tall, with brown hair and blue eyes and a smile that would melt the heart of any five year old. Throughout the year I would go out of my way to see that teacher and I would secretly wish that I could grow up and we would be married. I never told anyone about my feelings, I knew even then that no one would understand. In fact, to be totally honest, even I didn't understand my feelings. I just knew that I didn't like girls the way I liked boys.
As I went through elementary school, my feelings did not change. I knew that I had "chosen" to be gay and that was the way it was. I was picked on because I wasn't like the other boys, I was bullied and made fun of, I got into fights and did not have a lot of friends and all because at age five, I "chose" to be gay.
In sixth grade sex education class, I learned a word for my feelings, homosexuality. I learned that I might not be the only boy who had "chosen" to be gay. I was happy yet afraid that someone would find out so I kept my feelings locked deep down inside of me. I was alone and lonely all because at age five, I "chose" to be gay.
In junior high, I continued to have feelings for boys but because I knew what was expected of me, I dated girls and even shared my first kiss with a girl. (That didn't go well.) And yet, I looked at the boys around me. Was one of them feeling what I was feeling? Was one of my male classmates a homosexual too? And the bullying and feeling like an outcast got worse, all because at age five, I "chose" to be gay.
Senior high is supposed to be the best time of a young person's life. For me, it was not. I knew that I was different (gay) and I knew there had to be others but I felt so terribly alone. Again, I dated and had a girlfriend. We went to prom. We had fun but then people started asking if we would be the "high school sweethearts" that grew up, got married, moved to the house with the white picket fence, had two children and lived happily ever after. I knew that would never be my life because at age five I had "chosen" to be gay.
In college I again dated women and we had fun but once again, I knew that I was not like most of the others I palled around with. The only difference, the bullying decreased and I began to feel more like myself, the guy who at age five "chose" to be gay.
Then, in 1986, I met the man who changed my life and my perception of my life. I met the man that I eventually married. That man and I eventually moved into the house with the white picket fence. He is the man I chose to live the rest of my life with almost exactly 20 years after my first day in kindergarten, the day I "chose" to be gay. He and I will grow old (and better) together. Along the way he has helped me to finally realize that because at age five I "chose" to be gay, I made the choice to live my life openly and honestly. Openly and honestly as a happy gay man! And all because at age five, I "chose" to be gay.
So the next time you hear someone say that gay people "choose" the "gay lifestyle", please feel free to correct them and say, "No, they choose to be honest". And that is because you know someone who at age five "chose" to be gay.
There once was a boy....
There once was a boy from Southern Minnesota who dreamed of a life full of love and happiness, health and wealth. He was loved by his family. He had a happy home and although the family was not rich, he had all he needed and then a bit more. He was cute, sweet, smart and had dreams of making something of his future, with a life full of love and travel and happiness.
The boy grew into a man. One by one, his dreams started to come true. He found out who he was. He found true love. He found that he could have a life away from his family but still feel the love and support of those who had known him since his birth. He found he could be a success. He began to travel the world with the man he loved along as a guide to show him the way.
All went well until one spring day a short time before the man's 41st birthday, Then the world changed. HIV and AIDS entered the man's life and all came to a crashing halt, nearly ending his life and his dreams for good. Pain and suffering became the new normal for the man. But slowly, the man began to recover from near death. Slowly, the shadow of the grim reaper faded into the sunshine of a new life and with new dreams. After much trial and struggle, with the love and support of a wonderful man, loving family and concerned friends, the man's dreams one by one returned.
Life was no longer what the boy from Southern Minnesota had once dreamed it would be. Pain and struggles were part of his new life after near death. Daily routines had changed forever. Dreams were more difficult but still they lived on. The man became stronger and for him, life became much more meaningful, nothing was taken for granted. Love meant more, breath was a bit sweeter, sunshine a bit brighter and the partner, lover and husband who had inspired the man's dreams continued to stand strong at his side, guiding and helping him to reach once again for the dreams he thought he had lost.
And finally, the once little boy from Southern Minnesota realized that all along his dreams had been true. He had always lived a life that many would only ever dream of, a life of love and happiness. A life of health and wealth. HIV, AIDS and all the pain and suffering that goes with it will never, can never take that little boy's dreams away.
The boy grew into a man. One by one, his dreams started to come true. He found out who he was. He found true love. He found that he could have a life away from his family but still feel the love and support of those who had known him since his birth. He found he could be a success. He began to travel the world with the man he loved along as a guide to show him the way.
All went well until one spring day a short time before the man's 41st birthday, Then the world changed. HIV and AIDS entered the man's life and all came to a crashing halt, nearly ending his life and his dreams for good. Pain and suffering became the new normal for the man. But slowly, the man began to recover from near death. Slowly, the shadow of the grim reaper faded into the sunshine of a new life and with new dreams. After much trial and struggle, with the love and support of a wonderful man, loving family and concerned friends, the man's dreams one by one returned.
Life was no longer what the boy from Southern Minnesota had once dreamed it would be. Pain and struggles were part of his new life after near death. Daily routines had changed forever. Dreams were more difficult but still they lived on. The man became stronger and for him, life became much more meaningful, nothing was taken for granted. Love meant more, breath was a bit sweeter, sunshine a bit brighter and the partner, lover and husband who had inspired the man's dreams continued to stand strong at his side, guiding and helping him to reach once again for the dreams he thought he had lost.
And finally, the once little boy from Southern Minnesota realized that all along his dreams had been true. He had always lived a life that many would only ever dream of, a life of love and happiness. A life of health and wealth. HIV, AIDS and all the pain and suffering that goes with it will never, can never take that little boy's dreams away.
Sunday, January 18, 2015
My 2015 wish list
Well, here we are, half a month gone in the new year and I am finally getting around to listing my "New Year Resolutions". Guess I needed a little time to think them through. Actually, I really hate to fail so the act of putting a list in writing is a new and scary thing for me.
The first on my list, to be more physically active. I have let myself become sedentary and that is not good for my health. I purchases a Garmin Vivofit and I hope that will give me a push to walk and work out. I also paid for another year at LA Fitness so I need to get my money's worth!!!
Second on my list, to do more of the things I used to really enjoy. Things like painting, playing piano and singing as well as crocheting and knitting and even wood carving when the weather will let me outside so the dust won't fill the house. These things I used to take pride in and I let them slip. I already have projects in mind. I will be sure to post photos as the crafty projects are done. Jim got me a Dremmel for power wood carving so that will be a lot of fun to try.
Third, I will work harder on getting the word out about life with HIV and AIDS. I will send emails, speak to people and do all I can to make sure that as many people as possible hear my story and my message on HIV Prevention. As far as I am concerned, not enough is being done to prevent the unnecessary spread of the terrible and life changing disease. I would really love to hear that everyone who hears my story will never become infected and that the end of HIV is in sight.
The fourth and last thing on my list, I will ask for help when I need it. I will be honest and open when I need assistance in any form. I have been keeping my pain and my suffering inside and I tend not to ask for help when help is exactly what I need. And the first thing I need help with is keeping all of my resolutions. I know Jim will help and will push until he sees results but he can't be the only person.
So, will you help me with my list? Will you walk with me on my journey this year? Would you PLEASE help me get out there to speak at schools, churches, community organizations and any other places where an HIV prevention message is needed? Oh, and if you know how to knit, I could use a patient teacher..... Thank you!
The first on my list, to be more physically active. I have let myself become sedentary and that is not good for my health. I purchases a Garmin Vivofit and I hope that will give me a push to walk and work out. I also paid for another year at LA Fitness so I need to get my money's worth!!!
Second on my list, to do more of the things I used to really enjoy. Things like painting, playing piano and singing as well as crocheting and knitting and even wood carving when the weather will let me outside so the dust won't fill the house. These things I used to take pride in and I let them slip. I already have projects in mind. I will be sure to post photos as the crafty projects are done. Jim got me a Dremmel for power wood carving so that will be a lot of fun to try.
Third, I will work harder on getting the word out about life with HIV and AIDS. I will send emails, speak to people and do all I can to make sure that as many people as possible hear my story and my message on HIV Prevention. As far as I am concerned, not enough is being done to prevent the unnecessary spread of the terrible and life changing disease. I would really love to hear that everyone who hears my story will never become infected and that the end of HIV is in sight.
The fourth and last thing on my list, I will ask for help when I need it. I will be honest and open when I need assistance in any form. I have been keeping my pain and my suffering inside and I tend not to ask for help when help is exactly what I need. And the first thing I need help with is keeping all of my resolutions. I know Jim will help and will push until he sees results but he can't be the only person.
So, will you help me with my list? Will you walk with me on my journey this year? Would you PLEASE help me get out there to speak at schools, churches, community organizations and any other places where an HIV prevention message is needed? Oh, and if you know how to knit, I could use a patient teacher..... Thank you!
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The politics of the day.
As most of you may know, my political affiliation leans strongly to the left, more liberal side. Although I do not believe in everythi...
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As most of you may know, my political affiliation leans strongly to the left, more liberal side. Although I do not believe in everythi...
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I am often asked if I wishd I could go back in time and change my diagnosis, become HIV free. If there was a time machine and I could ...
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I know it has (again) been a while since I last posted. I really have no idea if anyone is reading these or not but it does help me to...
