Tuesday, December 2, 2014

World AIDS Day 2014

     Yesterday (December 1st) marked yet another World AIDS Day.  I say "yet another" because in my opinion, there has been too many.  I look at the news and see no red ribbons, no stories about those of us who fight to end HIV and those of us who live with HIV and AIDS.  And I wonder when we will mark the day with celebration of the end of HIV/AIDS as we know it.  Still, I hold onto a bit of hope.
     Last evening I had the honor of speaking to a small group with my good friend and fellow speaker, Annie.  We spoke at a World AIDS Day dinner and forum at the Open Cities Health Center in St Paul.  The topic was HIV/AIDS stigma.  Annie and I reworked our usual presentation to fit the topic and we were well received.  We met some wonderful people both employees of the health center and patients there.  I was amazed at the discussion and the interesting viewpoints from those in attendance.  All in all, a nice way to spend the evening, speaking, sharing and learning.
     Yet World AIDS Day can be a depressing day for me.  I remember all of those who have lost the battle including a few good friends and others I have known.  I can't help but think of the wasted lives, the huge cost, not only financially but in heartache and sadness, that this terrible virus has brought to the world.  And it is just a stupid virus. 
     But then I can also see hope on World AIDS Day.  There are those of us who have managed to live, to hang on against all odds.  We continue to fight and some of us hope that by speaking out we will slow if not end the spread of HIV.  By speaking at schools and events, I know that I have reached people who otherwise might never hear from someone living with HIV or AIDS.  Yet there are so many more who need to hear my story. 
  There are times when I feel like quitting, when I feel that I am pounding my head against a brick wall and all I get is a bad headache.  Often it feels like I scream and no one hears me.  But then I realize that I can't speak to the whole world and I can't be responsible for those who won't listen.  And maybe, if I loosen one brick in the wall, maybe, just maybe others will follow and the wall will start to come down.  Maybe my hard head will win and maybe one day we will celebrate the end of HIV and AIDS on December 1st.  Maybe, just maybe......

Monday, December 1, 2014

I am just drop in the ocean...

     Mother Teresa once said, "We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop."
     Recently Jim and I crossed the Atlantic ocean on a cruise ship.  In port, the ship we traveled on seemed enormous but standing on the deck watching the sea go past, the ship seemed so very small.  With no land in sight, the ocean went on forever and I became lost in the vastness of the never ending water.  Somehow I began to realize that my life was like a small drop in the ocean and all the work I do fighting to end the spread of HIV and AIDS has done nothing but create tiny ripples in that vast ocean. 
     Still, I am not depressed.  Even a small ripple can gather strength and become a tidal wave.  By continuing to make my voice heard, by yelling, screaming, teaching, and talking, I am giving my ripples strength.  And by doing all I do, others are joining me, adding their drops into the ocean and adding strength to my ripples.  And my drops are joining others who started before me.  The wave grows and grows until some day, it may become a huge tidal wave and overtake the spread of HIV.
     So, when someone calls me a "drip", I will consider that a compliment.  I will continue to fight, to make my voice heard.  I will continue to be a drop in the ocean, causing ripples that will grow into a tidal wave until the day that the spread of HIV has stopped and AIDS is just a memory, a small drop in the ocean that is life.       

Wednesday, September 24, 2014

“Death smiles at us all, all a man can do is smile back.”

     Okay, so lately I have had the end of life on my mind.  Gee, I wonder why.... a brother dies, my mother is slowing fading away,  I had a cholesterol test done and it was HIGH, I have to schedule more cardiac exams because of what the last one found (or didn't as the case may be), I have even MORE pills I have to take and it is fall, the season I find the most depressing of all.  At the moment, my list just keeps growing and I don't see an end in sight.
     I have often been asked by friends, family and students how I can possibly stay so positive when there is so much in my life that could be negative or just plain depressing.  The answer is complicated. 
     First, I am one of those irritating "glass half full" people.  I have always tried my best to look on the bright side, to see the best, even in the worst situations and to smile when I really feel like crying.  I also have always admired the kind of people who take a horrible situation and make something positive out of it. 
     Second, I am a Taurus born in the Chinese year of the Ox.  I am extremely stubborn, bull headed, persistent,  tenacious,  determined, etcetera.  I believe that a positive attitude can work wonders in my life.  I know that when my health was at it's worst, when the HIV had me down, I kept holding on and fighting.  Now, I guess I figure I really need to keep going.
     Third, but not last, I absolutely hate to be negative.  Jim might argue, he knows that when it comes to politics, the "right" wing and many other similar topics on the six o'clock news, I tend to be very negative and then I get mad at myself.  But when it comes to me, my health and my relationships (especially with the man I love), I really try to be very positive.  I know that a positive attitude can change the world.
     So, I guess I will try hard not to want to just give up.  I will try to keep smiling when I want to cry.  I will keep drinking only half a glass so that it will always be half full (nothing wrong with a half a glass of Scotch) and I will do the best I can to survive.  Then I will continue to laugh at death while death smiles at me!  

Saturday, September 20, 2014

"Our dead are never dead to us, until we have forgotten them."

     This morning I learned that my brother, Ron, had died.  He was fighting stage four lung cancer that had spread to his bones and seemed to be moving very quickly.  He was 66 years old.
     I have mixed feelings about his death.  Partly because Ron and I have not gotten along for about 30 years.  And partly because suffering with cancer as he did, death must have been a relief, not only for him but for those around him.  Still, Ron is the first of my siblings to die and no matter what, I do find that hard to accept.  I just hope Ron is able to find the peace in death that he was not able to find in life. 
     I do really feel sad for those who, in spite of all Ron's shortcomings, continued to stand by him and love him.  My nephew Morey has never had it easy and his relationship with his father has been rough at times.  Still, Morey stood by Ron and loved him.  Ron's adopted daughter, Laurie, has been the same.  In the end she and Morey were there to help and give him love and attention.  Ron's (new) wife, Candy, has been with Ron for 13 years or so and she was with him in the end.  Oh, and I forgot to mention Ron's other daughter, Katie. I have never actually met her but have heard about her from Morey. I hope you will keep her in your thoughts as well.
     There was a time when I thought I might be the first of the 5 siblings to leave this earth.  Certainly, that would not have been my choice, but I came so very close twice.  Because I nearly died those two times in 2002, I know that death is not something to be feared.  I found that it was very peaceful and calming to be able to just let go.  I do hope that Ron found it that way too.
     I do have some good memories of times spent with my next older brother and I will carry those memories with me as long as I live.  I am sorry for his family and I am sorry he suffered before he died.  And a small part of me is sorry that Ron never found the courage to say to me that he was sorry.

     RIP Ronald Gale Bandel   1948 - 2014

Sunday, August 31, 2014

My Four Letter Word...

P - A - I - N
   Of all the four letter words I know and occasionally - okay, often - use, this is the one that hurts me the most.  (pun intended)  It is also one I either say out loud or in my head several times in the course of the day.  The reason, this is a good word that describes my life.  HIV and AIDS have made a mess of my body and one result is pain.
   I live with physical pain to some degree each and every day.  All over body pain, leg pain, muscle pain, pain from neuropathy, deep aching pain, pain in my lymph nodes, occasional stabbing pain in my extremities , headaches (both migraine and tension) and lately severe pain from yet another outbreak of shingles (# six in the past eight months).  It can hurt to sit, it can hurt to stand, to walk, to sleep, etcetera...   
   How do I make it through the day with all this pain?  Sometimes even I wonder about that.  I do have pills I can take that will numb the pain.  And I do some guided meditations that can help to relieve some pain.  I take hot showers.  I have wonderful caretakers, my husband Jim and our "nurse cat" Rudi.  And since last February, I have seen an acupuncturist that to help with the pain and other issues.  But mostly, I have learned to live with it.  You see, (and some of you may already know) I am a Taurus born in the year of the Ox.  I am determined and stubborn.  I am bull-headed and unmoving.  I will achieve my goals no matter what.  And my ultimate goal, to remain strong and carry on!
   People often have no idea how much pain I do live with, mainly because I try hard not to complain about it and also because I try hard not to look like I am in pain.  When I attempt to describe my aches and pains, I tend to minimize by saying things like, "It's not too bad" or "It's only aches a little, like when you have a cold or flu".  And I really hate to burden anyone with my troubles.  Besides, other than suggestions and perhaps sympathy, there really is nothing anyone can do to relieve my pain.
   So, I hold my head up, I stand tall and try not to complain.  I patiently wait for medical marijuana to become available.  Plus I use a few choice four letter words to help get me through the day!   

Thursday, August 28, 2014

Some thoughts about living with death...

Today was my mother's 96th birthday.  My sister and I spent the afternoon with mom and tried to celebrate with her.  Mom was awake and seemed to know we were there but most of the time it was difficult to know if she knew who we were or why we were there.  Over the years, watching my mom's health fail, her memory fail and then her mind fail has been extremely difficult.  I remember a vital person with energy and a love of life.  Now there is a shell with only a small glimmer of the life I remember. 
Today I also found out that the next oldest in my family, my brother, does not have long to live.  His lungs and bones are full of cancer and now he has pneumonia.  Although I have not seen him for years and we have not been on good terms for over 30 years, I still feel sad to know that his life is being cut short and with so much suffering.
Today got me to thinking about death.  My grandmother Bandel's end of life was much like my mother's, slowly dying from a series of strokes.  My grandfather Bandel was extremely vital until the last year of his life.  He died at 95 years old.  My dad died very suddenly of a heart attack at the age of 76.  So, looking at the family history, death can and has come in many forms.
When I got sick in 2002, I was very near death twice.  The second time I almost gave up and let myself go.  It wasn't that I feared death, it was that I decided I had too much to live for.  But being that close to death was almost calming in a strange way.  I felt that my death would be peaceful and would eliminate my suffering.  For me, the end of life is something we all must face and the best thing we can do is face it with courage and dignity.  However, for some like my mother, death comes slowly and the dignity is taken away.  For others like my brother, death comes too fast and with too much suffering so again the dignity can be taken away.
I guess I would advise that everyone reading this to plan for what will eventually come.  No matter what, all of us will face the end of our lives.  Jim and I already have our funeral arrangements made and paid for and our legal papers are all up to date.  So, if either (or both) of us face our end, we are ready.
And, I know that death is not necessary the end.  If nothing else, we will live on in the memories of those we know and love.  And my personal view is that what ever is our spirit, our life force, or our life energy will live on.  Who knows, perhaps we will come back in another life until we finally get it right.
Whatever the case, my father and my grandparents live on and are always with me.  They walk along my side and they inspire me daily.  Some day soon my mother and my brother will join them.  And in the years to come, I will be the one to live on and walk with someone too.   

Saturday, August 23, 2014

Happy Birthday Mom

On August 28th my mother will turn 96 years old.  An amazing age when you think about where she came from and what she has gone through to get here.  Still, I have very mixed emotions about celebrating her birthday.
Severe dementia has robbed my mother of most of her ability to enjoy her years.  The beautiful smile of hers, the one she used to give so freely, is now a happy memory of mine.  That sweet voice that could calm my fears and give me hope, make me laugh and fill me with wonder, is never heard.  Our long talks that could some times last until the middle of the night have been replaced by holding hands and watching the world go by until it is time for mom to go to bed, often way before the sun has gone down.  Still, I hold on to the memories of the mother she once was, the person that is still inside the small, frail shell that she has become.
Mom was born in 1918 to a poor family in southern Minnesota.  When she was nine years old she was put up for adoption from an orphanage in St Paul.  She was almost immediately adopted by an elderly woman who treated mom as a slave.  Mom was there to take care of this woman, wash, clean and make meals.  Because of the conditions of her treatment, mom was returned to the orphanage and was then adopted again, this time to a wonderful couple who gave mom a happy childhood and taught her many valuable lessons in life and helped her to become a beautiful and well rounded woman.
In 1939, my parents were married.  Mom always said that dad was the love of her life.  She said that from the very first time she met him she knew that he would be the man she would marry.  They had five children, I was the last.  They lived through many tough times and still they remained happy and they kept an optimistic view.  Even when finances were tight and things didn't go as planned, mom kept the house going and kept food on the table.  When my father died in 1995, mom did her best to remain strong and positive.  She had lost the love of her life but still she kept going.
As the years passed, the robust flame that was the strength of her personality began to flicker.  On her 90th birthday, that flame had become a bit dimmer and her age definitely showed.  Still, she carried on and kept that sweet smile.  Today that flicker has grown dim but still something of a flame remains.
On my last visit with mom I was able to make her smile a couple of times and she even answered a question with a quiet "no".  I know my time with her is coming to an end and even a flicker of a smile can now make my day.  And I know that we can hold hands and watch the world go by until it is time for mom to go to bed.
So, to my mother, Happy 96th Birthday!!!
I hope I am able to live as you have, with strength, love, determination and that sweet smile.      

Tuesday, August 12, 2014

Hiding My Pain - Don't worry, I'm Okay...

Ever had a bad cold or flu and you just hurt all over?  Ever had stabbing pain shoot up from your feet to your hips?  Ever wanted to stay in bed all day because the pain was just too much to handle?  If so, welcome to my world.
I am often accused of not being totally honest about how I am doing when asked.  I usually say something like, "I'm okay" or "Can't complain" because, like a good Minnesotan, I do not want to burden people with my problems.  Plus, I do complain about other things, I guess I figure that my health issues are my problems, not someone else's.  Instead, I don't bother anyone with my pain because there really isn't anything anyone can do about it. 
Still, there are times when I want to be perfectly honest when I am asked, "How are you?".  I want to answer that I am not feeling great.  I hurt all over, I have shooting pain in my legs and I am totally exhausted all the time from fighting the pain.  That plus all the other health issues I face can, at times, make my life a living hell. 
But ever since I was a small child I have been an optimist.  I am a "glass half full" kind of guy.  So, rather than dwell on my pain and the health issues that living with AIDS provides, I try to be positive and not let my true feelings show.  However, that can also be exhausting. 
But to treat the pain there are always medications, pain killers of all strengths and doses.  And acupuncture.  And meditation.  And hot showers. And humor.  And getting together with friends.  And travel.  And.......  But the best treatment of all is the love I feel from my wonderful husband Jim.  When he smiles at me, when we share a joke or when he just lets me know that he is there, by my side, when he offers a helping hand or he just lets me rest.  Without him, I really would not make it.  He gives me the strength to carry on and to say, "I'm okay".
Of course, our cat, Rudi. helps as well.  When he sits on my lap and purrs or cuddles when I nap, he makes me forget the pain for just a while.  Unless his claws need clipping! 
But really, don't worry about me.  I am okay and plan to be okay for a good long time!!!!!

Saturday, August 2, 2014


     Today Jim and I put together a shelving unit with glass doors (from Ikea) so that I could "properly" display my mother's china.  The china was mom's pride and joy.  Dad got it through his workplace as a replacement for mom's china that had been broken in a Thanksgiving mishap a year or two earlier.  As we washed, dried and placed the china into it's new home, I was filled with memories of my youth, a time before HIV, a time before I fell in love and a time before I was infected with HIV and way before my AIDS diagnosis.  
     My parents were both 42 years old when I was born so they were the age of most of my friends' grandparents.  They were a wonderful couple, a loving example of what a married couple should be.  My father adored my mother and though he did not have much money to spend, his job did not pay a huge amount, he loved buying mom gifts and making her smile.  My mother adored my father, she took care of the house as best she could and she took care of my father and me as well as working various jobs to keep money coming into the home.  My father grew 2 acres of vegetables at the Bandel farm north of Rochester and my mother canned and froze those vegetables so that we always had vegetables with our meals.  Both of my parents were good cooks and so I always had warm and wonderful meals. 
     My siblings were all much older than I was, the next older was 13 years my elder and the oldest sibling, my sister, was 20 years and 6 months to the day older.  Basically, that meant that at times I grew up as an only child.  My 3 brothers and 1 sister came and went in the household.  Some stayed for a time while others visited for shorter stays.  I always had fun with my siblings and with my dog, Ginger, as well as many other pets that ranged from mice to rabbits, chameleons to guppies, even a raccoon and squirrel.  I also enjoyed fun times with the neighborhood kids playing games like "Kick the Can" and "Car Tornado" in the summer and sledding and building snow forts in the winter.  I also enjoyed my time alone hiking in the woods in Quarry Hill Park or on Pancake Hill behind our house or reading books in my room.
     My father's parents lived about a mile from our house and often I would spend time at their home.  Both were wonderful grandparents.  My grandfather loved wood working and being out in the woods.  He taught me how to respect nature, how to see the animals and plants that live in the woods and how to hunt and harvest what nature had to offer.  My grandmother was a magical cook and baker.  If you were to look in her refrigerator and cupboards you would not see much food yet she could put together a wonderful meal that would fill the house with fabulous smells.  My grandfather also taught me to take part in government, something that I still do to this day.  He once said to me that a person had no right to complain about the government unless he was willing to participate in the process of government.  Both were "old fashioned" in many ways but both were also way ahead of their time.  My extended family, aunts, uncles and cousins were always part of the holidays and other events at my grandparent's home.
     My mother's china was kept in the cupboard above the sink in her kitchen and was used only for special occasions like holiday dinners and family celebrations.  My father got it for mom because a couple of years earlier, mom had prepared a huge meal for a special Thanksgiving dinner and as she put the large, heavy turkey on the dining room table, the legs gave way and the table with all it's contents crashed to the floor.  Mother's good china was smashed and the meal was destroyed.  I think my dad always felt bad for that so he saved points at work until he was able to buy mom this set of china.  It is a set for eight and although it isn't too fancy, it is well made and looks great. 
     Holding this set of china, seeing the pieces again, brought back the many memories of my happy childhood.  There are so many memories that if I was to write it all down, I could fill a few heavy, thick volumes with my autobiography.  Maybes I will tell just a few more stories in future posts. 
     Now back to the present,  I am living with AIDS and working to end HIV in Minnesota through education.  I am also working help those who are also living with HIV / AIDS by advocating in the government and speaking out about life with HIV.  Perhaps there are aspects of my childhood that helped prepare me in some ways to live this life and survive all the hardships of AIDS.  

Saturday, July 26, 2014

Ever had one of those weeks?, ...years?, ...lives?!?

This past week has been an interesting one with many ups and downs. 
On Wednesday we returned home after a WONDERFUL visit with our good friends at their cabin near Ely only to discover that our water heater (new in 1991) was leaking badly.  Since we do not have a drain in the floor of our cellar, we had to turn the heater off and we have been living without hot water since Thursday morning.  Try washing dishes by heating water in a tea kettle and pouring it in the sink.  Back to the "good old days"!  Add to that, no showers.  Guess we know a bit about what things were like when the house was built in 1904.  Today we are finally getting a new heater installed. Yea!!!
Then on Friday, I returned home from my acupuncture appointment all relaxed and feeling good only to find a bill in the mail from the hospital where I get my acupuncture done saying I owed almost $1000.00.  And, they did not include the sessions done in June or July.  Jim got on the phone and was able, after a few phone calls, to figure out it was their mistake and I should not have to pay that amount!  Again, Yea!!!
It is times like this that I tend to look back on the year I was diagnosed with AIDS.  I remember all too well the weeks spent in the hospital with a fever of 105 wondering if I would live to see the sunrise the next day.  I remember being afraid and feeling alone, even with Jim steadfastly at my side.  I was scared because the only people I had known with AIDS had died.  I remember my recovery at home, at first too weak to go outside and see the flowers blooming.  I remember going back to work and being afraid of how my coworkers would react when I told them of my diagnosis.  And I remember the look on my mother's face when I told her knowing that she was afraid she might loose her youngest son.
Although all of this has been extremely stressful, I am able to think about how I do really consider myself to be lucky and I really can't complain (too much).  I am alive and for the most part, healthy.  I have a fabulous husband by my side who is willing to offer love, support and assistance when I am in need.  I have terrific friends and family who's love and care often surprises me.  I have a nice home and there is money in the bank.  I am still able to travel and see the world.  Plus, right now the tomatoes are ripening, the cucumbers are growing and rest of the vegetables are doing well in spite of the strange summer we have had.  And, our city is not being bombed, we have freedom and I am legally married to the person I love.  All in all, life really is not too shabby.
Now, on to fix the rest of the world!!!!

Wednesday, July 23, 2014

Back in Minneapolis (the Real World)

Jim and I got back home this afternoon from a wonderful trip to our friend's place near Ely, MN.  They own a sweet cabin on a big lake north of town.  We went up Saturday to celebrate our 28th / 8th anniversary and our friend's birthday.  What a fabulous trip to visit our close friends, S & N!
This trip got me thinking.  What if I was not able to do any traveling?  What if I had to stay home because of the damage AIDS has done to my body? 
Often travel for me can be a huge challenge because of the many medical issues I face day to day.  I have to either medicate or be close to restrooms at all times because of bowel troubles.  Pain can cause me to have to take more medications or lay low.  I need to rest often because of chronic fatigue.  There are so many issues I have to worry about and so many things I have to make sure I remember to pack.  Is travel worth all I have to put up with?
My answer in one word, YES!  I love seeing the country and the world with Jim.  I so enjoy visiting friends and family in their favorite places.  I can not go through life without experiencing other cultures and traditions.  And, I absolutely LOVE to try new foods, see new things, meet new friends and experience the world first hand.  Without travel, what an awful life I think I would have.
Still, I realize that there may come a day when I will have to stay put.  I just hope that Jim will be at my side and that I will live in a place that my friends and family will want to come and visit me. 
On this trip to Ely I made friends with a chipmunk.  By the end of the visit I was feeding him from my hand and he was climbing on my lap and checking me out.  I also fed chickadees and nut hatches from my hand. 
These are just some examples of the experiences that make travel worth the trouble for me.  Plus, I get to share these experiences with people I love!  Thank you Jim and our friends in Ely, S & N!!  Love you all!!! 

Thursday, July 10, 2014

The Love of My Life or "It was a dark & stormy night"

I am often asked how I manage to keep going and keep a positive attitude with all that I go through on a daily basis.  Well, the main answer, the easiest answer, is that I have the most wonderful support from the man in my life, Jim Lawser!
Jim and I met in Rochester, MN, shortly after I was infected with HIV.  Jim always tells people that, "It was a dark and stormy night" that we met.  It was an evening at Silver Lake Park in Rochester where I had gone to watch the sunset on July 19th, 1986.  We had seen each other around town but until that evening we had never met.  Once we did meet, for me, it was love at first sight.  Jim was interested in me as a person, not just in having a good time or a one night stand.  That first night we talked for hours and really got to know each other.  It really didn't hurt that he was (in my opinion) extremely handsome and sweet plus he was older than me by 17 years and I always found older men to be more attractive.  As the weeks went by we exchanged notes, saw each other as often as we could and I really got to know the man who would become the love of my life.  Then, in the fall of that year, we moved to Minneapolis and began the adventure that would become our lives together.
Many years later, I got very sick and was hospitalized.  
Jim was by my side as I received my AIDS diagnosis.  He was by my side as I struggled against the pneumocystis pneumonia and other opportunistic infections that threatened my life.  He took off from work as I fought the 105 degree fever that raged through my body and he was the one who held my hand and promised to support me in my decision to fight to live.  Then when I was able to come home and begin the long journey to recovery, it was Jim who took care of my medical appointments, my many medications, my physical, mental and emotional needs.  When I decided, against my better judgment and my doctor's opinion, to return to work, it was Jim who fully supported me.  He gave me time to take care of myself and was there when I needed him most.  Even though I have always had the love and support of many friends and family members, it has always been Jim whose love and support has never waivered, especially in the worst of times.
Through our 28 years together, Jim has shown me the meaning of love and support.  He has shown me what a true spouse is.  He is the reason I keep going, I keep my positive attitude.  Jim is my reason to live and I plan to do so for a very long time.

Happy 28th Anniversary Jim!! 

Happy 8th Anniversary Husband of Mine!!!

Happy Legal At Last!!!

Monday, June 30, 2014

Sometimes I cry in the shower

When I started speaking to high school classes I was an extremely shy and introverted man, scared to death to stand in front of a group of strange teenagers and tell the details of my life story.  Still, I was determined to help as many students as I could learn about HIV prevention and what could happen if they failed to protect themselves and the ones they love.
My first few classes went well, only a couple questions at the end of each class and those questions were not hard to answer.  Then, as my confidence grew, as the day progressed, in one of the last classes of the day, a question was asked that made me really stop and think.
With only about five minutes left in this class I asked for any more questions.  Slowly and silently a hand went up in the back of the classroom.  A petit blond quietly asked, "With all your health issues that AIDS caused, your pain and your suffering, do you ever want to just sit down and cry?".  Suddenly, with that simple question, all of the walls I had put up around me, all of the barriers that shielded my vulnerability and my inner soft core, were threatened.  I thought for a moment, do I answer truthfully or do I continue to hold up those walls I had so carefully built over the years. 
I took a deep breath and answered, "Well, yes.  In fact, sometimes I cry in the shower.  Why the shower?  It is simple.  I cry in the shower because no one is there to see me cry.  No one can hear if I let out a sob or two.  Plus, the shower will always wash away my tears and as those tears go down the shower drain so do the reasons I cry.  The water not only washes away my tears but it washes away my sadness, my pain and my weaknesses leaving me fresh and ready to face whatever will come that day."  There was silence.  Then slowly I began to notice smiles on the faces of many students.  Many more nodded in agreement.  By being total honest and totally vulnerable, I had reached a majority of the students in this class.
It was then that I made the decision that I must be totally honest every time I speak about my life with HIV and AIDS.  I must not only show my strengths but I must be willing to show my weaknesses as well.  I must be willing to answer the difficult questions with honesty no matter how that will make me feel.  If I am totally honest all of the time, the students will know and will be willing to listen even if the subject matter is difficult for them to hear.  And, if I reach just a few students per class, if just a few will change their behaviors and stay HIV free, I have done what I set out to do.  And then maybe the tears that are washed down my shower drain, the tears of sadness, pain and weakness, will be mixed with tears of strength and joy.

A little about me...

I was born and raised in Rochester, MN.  In 1986 I met the love of my life, Jim, and we moved to Minneapolis to start our new life together.  Also in 1986, before I met Jim, I was infected with HIV.  The problem was, I didn't know it until 2002 when I was rushed to the hospital near death.  There I was diagnosed with Pneumocystis Pneumonia and AIDS.
I have worked in a nursing home, hospital, clinic and then for the Minnesota Department of Human Services, first with the MinnesotaCare Program and then with the HIV/AIDS Division.  Unfortunately, my health forced me to have to leave my job and retire in 2007.  Now I spend my energy and time trying to educate high school and college students and their parents about my life with AIDS and HIV prevention. 
So, this blog will be about my fights, the fight to live with AIDS, the fight to educate people about life with HIV and AIDS, the fight to end HIV and the fight to end the stigma and shame related to life with HIV and AIDS.
Please follow along my journey, share with your friends and family and please feel free to ask questions and share your suggestions.  Thank you!!!

Sunday, June 29, 2014

Scream with me...

This past weekend Jim and I watched HBO’s “The Normal Heart” written by Larry Kramer. If you have a chance, I highly recommend that you see it. It is so very well written and acted! Watching it the tears flowed freely and often as I reme...mbered those early days of the AIDS crisis and saw that from my point of view, after 33+ years, not a whole lot has changed.
After watching “The Normal Heart” I realized that we are still fighting to stop the spread of this stupid virus called HIV. We still deny there is a problem and we are still afraid to speak up, no, still afraid to yell, no, we are still afraid to shout it at the very top of our lungs and scream until we have no voice left that there is a problem here. People of every age, every color, every gender classification and every sexual orientation are still being infected and at alarming rates! And, people of every age, every color, every gender classification and every sexual orientation are still getting sick and are still dying in numbers too large to comprehend after all this time.
We know how HIV is spread. We have known for years. We know how to prevent the spread of HIV and we know how to treat those who are living with HIV and AIDS and again, we have known for years. Yet, HIV continues to spread and people living with HIV and AIDS continue to die. Why is this happening?
I have spent the past 12 years of my life fighting. I fight every day to live with this stupid virus called HIV and an AIDS diagnosis! I fight to stay as healthy as I can. I fight to teach those in schools and their parents to be safe, to do all they can to stop the spread of HIV and to protect themselves and those they love. I fight to take my pills on time every day. I fight to end the stigma and shame that goes with an HIV or AIDS diagnosis. And almost every day I feel that these fights are for nothing. It often seems to me that almost no one wants to help and almost no one wants to fight along side of me and a few others like me who are fighting to end HIV. And again I ask why is this happening?
Just in the past couple of years, my relationship to the person I love has become recognized as a true marriage, a true and loving relationship. It took years of fighting and often during the fight it seemed like we would never win. Yet now here we are, Jim and I are truly a married couple, recognized by both the state and country we call home. Marriage equality is now a fact and not just a dream for us and thousands like us.
Now that the fight for marriage equality is won, can we please turn our attention to the fight of the epidemic that has taken so many lives and cost so much money, time, pain and sorrow? It is an epidemic that began over 30 years ago and continues to devastate the lives of so many. Can we please start talking, no, start yelling, no, start screaming from the top of our lungs until we have no voice left that the time to fight to end HIV is now? Can we please do something together so that I will not have to feel as if I am fighting these fights alone? Can you, my friends, my family, my fellow human beings help me fight? Will you start screaming with me, please?

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...