Wednesday, June 15, 2016

Fear and fear itself

     Since the shooting in Orlando this past weekend I have been thinking a lot about fear in my life and fear that others like me might have.  It is with a heavy heart that I feel the need to explain myself, to explain a life of fear and the hope that kept me living.
     As a boy I remember always feeling afraid most of the time.  I was afraid of being different.  I didn't like sports, I liked music.  I didn't play football, I played the violin and piano.  I didn't play baseball, I played kickball.  I didn't want to have a girlfriend, I wanted a boyfriend.  I was not like the other boys and they knew it.  I was bullied, I was threatened and feared for my safety.  Even in a "nice place" like Rochester, MN in the 1960's and 1970's, I was in fear.  I could not be myself.  Sometimes the fear was enough to fake being sick so I wouldn't have to go to school.  Most of the time the fear just caused me to go into my shell and become the introvert I was and still am today.  And even though I had a very loving family and a few good friends, I feared what would happen if they found out who I really was.  I feared that they too would hate me because I was different.  In spite of this constant fear, I was hopeful that some day I could be who I was, open and honest about being gay in a world where that was not the "norm".
     When I moved to Minneapolis with Jim in 1986, some of the fear I had growing up began to fade.  Suddenly I was in a city where there were others like me.  I had the love of a really good man and with Jim, I was part of a larger picture, the gay or GLBTQ community.  Still I feared being totally who I was in public.  Even though we were in love, we were not allowed to show that love as we walked down the street or sat in city parks.  We could not hold hands or kiss where someone might see us.  I feared that we could only be who we were in the privacy of our own home.  Still, I was hopeful that things could change, that some day we could be open and publically show our love.
     Then in 2002, I was diagnosed with AIDS and my world changed dramatically.  Suddenly I had to be open about who I was to strangers, to doctors and nurses, to the Department of Health.  I had to be open and honest to my family, friends and coworkers.  Suddenly my fear took on a whole new perspective and not only was I in fear of being who I was but I had to fear that people in my own community would think less of me because of my diagnosis.  I feared losing friends and the love of family because of the shame of having AIDS.  I also had to fear for my life because of my health.  As I came to terms with my new fears, I realized that being open and honest, being who I was and telling people about my diagnosis was helpful in lessening the fear.  After a short time, thanks to a good friend and teacher at a local high school, I began telling my story to complete strangers and high school students.  I was suddenly telling people about being gay and having AIDS.  Yet, there were fears of stigma and shame and fears of being too public.  But I held out hope that some day I could be myself and not have any fear.
     In 2006, after 20 years together, Jim and I were legally married in Vancouver, BC, Canada.  As we spent the week in Vancouver, my fear was gone as suddenly we were in a place where who we loved didn't really matter.  From the moment we crossed the border, we were first class citizens.  We could be ourselves and I had no fear.  It was wonderful!  Then we came home.  As we reached security in our own country, we were back to being second class citizens.  We were forced to go through security separately, as not legally married, not as a family.  The fear returned.  But again, I held out hope that one day our country would recognize our marriage and we could be ourselves without fear.
   Then suddenly it happened.  Marriage equality happened in Minnesota!  We were finally first class in our home state.  The feeling of joy quickly replaced the fear. And then marriage equality was the rule in all of the US.  We went to GLBTQ Pride that year with a renewed sense of who we were and we actually felt no fear walking together and holding hands.  We had finally made it to the place where we were all equal, or so I thought.  But there was always an underlying bit of fear and we continued to not show affection in public places.  Still, we had moved toward the right direction and hope was closer than ever.
     When the current Presidential election began there was a huge outpouring of hate and bigotry in our country.  Suddenly all the fears I had lost returned.  I feared that the wrong people would find out who we were or find out about my AIDS diagnosis.  I no longer felt safe in my neighborhood, my city, my state and country as I was afraid that the hatred and bigotry had spread.  I began to fear that if a certain Presidential candidate won, Jim and I would again be reduced to second class citizens and the hate and bigotry would spread enough that we would be forced once again to hide who we were.  I feared that I might not be safe outside my home.  Yet, I continue to hold out hope that the best candidate will win the election this coming November and my fears can be put to rest, at least until the next election.
     But this past Sunday morning my fears came rushing back.  As I watched the horror on the news and saw my GLBTQ community attacked and hurting, a lifetime of fear flooded over me.  I feared for those who were at the nightclub and their families and friends, I feared for our friends who live in Florida and I feared for our community and for our country.  Was this the beginning of more violence against the GLBTQ community, against our country?  Who would be next and when?  Would we be safe or would we have to fear leaving our home and would we have to fear attending Pride this year?  My hope once again began to fade. 
     And it was then I realized, fear was what the haters, the bigots, the shooters, the "terrorists" want me to feel.  Fear is what they expect.  The more I thought, the more I realized that I would not go back to being afraid, I would stand with the man I loved and show courage when courage was most needed.  We would attend our GLBTQ Pride with courage and strength and we would not let fear rule.  We would show who we were and who we loved without fear.  And maybe, just maybe, we would even hold hands or kiss in public. 
     Hope MUST replace fear.  Hope MUST win if the world is to become the world I dreamed of as a child.  Hope of a world where we can all be ourselves, love who we want and show that love without fear, without being forced to be afraid.  Hope of a world where little boys and little girls can be different and that is okay.  I still have hope.....  

Friday, June 10, 2016

Well, life changes... Sometimes for the Good!

     I know it has been a while since my last post and I am sure some concerned readers are wondering what happened to me.  Well, things have changed (finally) and mostly for the good.
     Let's start where things left off.  As you might remember, I was a mess.  I was wondering if I had made the right decision to live when I was first diagnosed with AIDS after everything seemed to be going wrong with the deaths of family members and the seemingly impossible fights to get quality health care not to mention the decline of my quality of life that all in all made the start of 2016 one of the worst ever.  Well, things change...
     It all began with my wonderful husband, Jim, taking over and calling HealthPartners to complain about the pain doctor I was seeing.  Suddenly, I had an appointment with a new pain doctor plus a wonderful psychologist who specializes in pain management, a terrific psychiatrist who also specializes in pain management, a TMD doctor and physical therapist who will work on my clenching issues, appointments for acupuncture and finally, an appointment with someone at HealthPartners who is certifying patients for medical cannabis.  And all of these people working together to help the whole me!
     My new pain doctor is a young man with lots of sympathy and lots of ideas about how to deal with my whole body instead of just a certain part.  He suggested the others in my medical team to work together to improve my quality of life as a whole.  What a concept!  Now I will be seeing many who will all work towards the same goal. 
     With my therapist, we are working on my life as it is, with all my pains and exhaustion.  We are trying a rapid eye movement type of therapy that will work on ridding myself of the bad feelings of past trauma and letting go of those feelings.  She sees me and Jim together some of the time and me alone at other times.  She is also the one who kick started me on seeing one of two medical professionals in HealthPartners for the medical cannabis.  I am seeing her once a week and have really been enjoying these appointments!
     The psychiatrist is working on the medical aspect of my depression and has started me on a low dose of an antidepressant to take the edge off and to increase my energy level.  So far it seems to be working a bit.  I have seen her twice and she really takes the time to understand exactly how the medications are working for me.  I can't say they cure everything but I feel a bit better and with the rest of the work the team is doing, I should be getting back to my happier self soon!
     The TMD doctor set me up with the Physical Therapist to work on my stress clenching and he will also fit me with a brace to wear to help me stop the clenching.  He is a great doctor who spent time with me listening and examining my jaw and teeth to determine the best way to proceed with treatment.  Hopefully this will prevent any bad and expensive dental work.
     The physical therapist is working on exercises to help me to stop my clenching and to relax my jaw.  One not so good effect from the first session, I came home to one of the worst headaches I have ever had.  On a scale of 1 to 10, this one was a 12!  The only thing that saved me was the Imitrex that I had on hand for my cluster migraine headaches.  Yikes!
     Acupuncture has been nice too.  I am back at the Penny George Institute and working with a couple of terrific acupuncturists.  My first session was nice at the time but again, caused me pain after I was home.  In fact, the pain started around 5:00am and woke me up.  Once again, Yikes!  Thank goodness for the Vicodin I keep on hand.  The second session was not so much a problem compared to that!
  And finally, I AM NOW CERTIFIED IN MINNESOTA FOR MEDICAL CANNABIS AND APPROVED BY THE DEPARTMENT OF HEALTH!  In fact, I purchased my first 2 doses yesterday.  I am excited to try it.  The one BIG downside however is the cost.  So, I will be reworking my budget and will figure out some way of paying for the cannabis!  Perhaps I could sell myself?  Okay, that wouldn't work since I would be the one to pay... 
     Anyway, things are finally headed in the right direction in my life.  I have a great medical team working on the whole me and not just bits and pieces.  And, as always, there is my terrific husband, my hero who is willing to kick some butt to get things moving!  I am starting to see just how terribly lucky I really am to have chosen to fight AIDS to live!

     Oh, and one more thing, in case you didn't see it, I was interviewed by Sam Radwany at WCCO on line for a great article.  Check it out -

For HIV/AIDS Patients In Minnesota, The Fight Is Far From Over: HIV/AIDS patients and activists say their cause has fallen to the wayside as public interest wanes.


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...