I’m on a three month sabbatical, taking time to work a little on Todd after a very rough 2013. I’m doing some reading, volunteering, meditating, and also having some fun…traveling a bit, and enjoying the many blessings in my life. Overall it’s been a very enlightening and freeing experience. I had no concrete expectations of the time. I made out some general goals, but am also leaving myself open to what presents itself and how life unfolds.
I recently started to listen to some past sermons from Broadway that I missed in 2013. I’ve been a member at Broadway since 2005 or 2006 I think. It’s my community center, much more so than a church. I’ve found a deeper spiritual health and grown in my understanding of community – well beyond the conservative, fundamentalist community I lived in during my college years. I’ve found tremendous freedom in being “out”‘as a gay man, where my sexual orientation has no bearing on my relationships. I’ve also openly talked about my struggles with addiction and relapse – drugs and sex – and found acceptance, encouragement, support and a general absence of judgement. It truly is a unique beacon of hope, a gift…the culmination of many life experiences bringing me to the point where I’m able to discover my own voice and celebrate my gifts and passions within a community.
Having said that, there’s one recent shadow that somewhat hangs over me – a source of shame and self-doubt; a source of fear of rejection that holds me back sometimes from living fully into this life before me. On one hand, I have many examples thru family and close friends of acceptance and love around this topic. And yet it’s a topic that I guard close, and don’t share as freely as my love of travel, my passion for photography, my addiction to crystal meth or my felony record.
To set the stage, here is the first sermon I started to listen to from Advent 2013. I missed this sermon….but I don’t believe it’s a coincidence that these words from Mike Mather were the ones I first stumbled upon during this sabbatical podcast marathon:
“Some people who are HIV+ are so ashamed, so afraid of how people will respond that they have not told their families or those who love them. This is to remind everyone that community is where you experience love. Peace is not the absence of violence and shame, but the awareness of possibility and grace. There is guilt and shame that each one of us carries, that holds us back from receiving love and support that is present even when we don’t see it…
“I have done funerals for individuals who have died of AIDS related causes. Sometimes they and their families have asked me not to speak of it.”
“They talked of the shame they had…
Somewhere over the rainbow? What does it mean to live in a community, a city, a congregation, where we can talk about these things and people can know love, grace and freedom from shame. That freedom, people as yeast in the community….listening, offering love, grace, acceptance and welcome. It means we see somewhere over the rainbow and we are there.”
So here’s more of my story….
In early 2012, during a brief hospitalization, I was diagnosed with HIV – within weeks of being infected. Through the grace of my Higher Power, I landed with one of the top HIV/infectious disease specialists in the State. We immediately started me on medication with a three-in-one-pill “cocktail.” By January 2013, my blood tests showed the HIV virus to be “undetectable” in my bloodstream. This means that the HIV plasma viral load is below the lower limit of detection for the particular test assay that is being used. To give you a reference, in five days between the initial tests in early 2012 during my hospital stay, my viral load went from 700,000 parts per unit to 2 million parts. This shows me both how rapidly the virus can spread without treatment, and how relatively quickly the new medications can work, brining my load from over 2 million to less than 20 parts in about 9 months. I was also fortunate because of the early diagnosis and quick treatment: my CD4 count (a general measure of a healthy immune system, in any person) has always stayed within the acceptable ranges of 900-1,100 (hence the term often used “healthy.”) (Any of us, with or without HIV, will show natural variation over time with just the normal ebbs and flows of general health.)
Now that’s the emotionless science of the matter. Let’s talk reality now:
- I will have to take medication for the rest of my life, to keep my viral load undetectable and my immune system healthy. There are other things, like exercise, flu and pneumonia shots, watching my stress levels, and general health tips we all should follow that I will need to heed more seriously
- The first night I came home from the doctor, knowing my diagnosis with pill in hand…I sat alone in my living room, staring at the pill. Once I took it, there was no stopping taking it… Akin to taking only part of an antibiotic regimen, it can actually lead to developing a more potent, drug resistant stream. I was scared and alone…
- While I’m “undetectable and healthy,” I am still HIV+. I am not cured. As I should have been before, I must practice safer sex, to reduce the chances of infecting other people. Granted, with my low viral load, I’m about 96% less likely to infect someone than when I was untreated….but not 100%. And notice I said safer sex. There is not nor ever has been such thing as safe sex. Just safer.
- Being in recovery gave me a lot of great tools like the Serenity Prayer and a spiritual life, as well as support from my family and close friends. Even 5 years ago, I would have been a lot more isolated, ashamed and at risk… My sister, brother, mother and father all know about my status and my health. For that I’m grateful beyond what you can imagine.
- I was able to share with my mom that my viral load was undetectable – a huge milestone – a week before she ended up dying of a heart attack. I had great love and support from her, and my family…and the closure I was able to have with my mom from being honest and transparent brought me great peace when she died, knowing that we had everything out in the open.
- I have experienced hateful and hurtful comments and reactions from men I’ve talked with about dating, who have rejected me because of their fear and ignorance of my status. And to be honest, when I was HIV negative, I was equally afraid and uneducated. While I never said hateful things, I would not consider dating someone or having sex with someone who was HIV+, regardless of their relative health and ability to practice safer sex. I now experience that same “silent rejection,” and regret that I failed to learn more, love more and see these men as human beings, worthy of love, acceptance, compassion and understanding.
- Here is the site I was given by my nurse practitioner for reliable information on the internet for HIV/AIDS http://www.thebody.com
- I have a fear of being alone, of not being in another committed relationship again, of not experiencing love because of my status. My work on self-acceptance and self-love is now heavily and most influenced by my status. I’m learning to not rely as much in external validation…but it’s hard. I can not lie.
- When I watched Griffin and Phoenix, I bawled for the first time after my diagnosis…I mean really deep, gut wrenching sobbing….fully feeling the deep loss, grief and fear that comes with “losing” a part of my health
- HIV is not a death sentence. By following medical care and treatment regimes, I can live a full and exciting life. In the US, I’m told, more people now die from complications related to diabetes than of HIV/AIDS related complications.
- I’m lucky that the strain I have is not already resistant to any of the main categories of HIV medications on the market. Over time, I may develop resistance (hence the regular blood tests), at which point I will need to switch medication.
- Until Obamacare came along, I could be refused health insurance based on a pre-existing condition. I was refused healthcare when I left my last employer, by both private and state insurance. Fortunately, the State of Indiana has options for those like me, enabling us to get health insurance to cover the $2000/month medication costs and twice annual routine blood tests. Because of heroes like Ryan White and others, Indiana is one of the best places to live and get comprehensive care for HIV/AIDS. Wow.
So there. I’m out. Again. I’m only as sick as my secrets. And as Mike preached, the more we talk about topics like this, the more we get them out in the open, the more the shame and darkness is overcome, replaced with love, acceptance and hope. This disease doesn’t define me anymore than my sexual orientation, my recovery, my criminal record, or my work. I’m a human being, a 45 year old man, a son, brother, uncle, cousin, nephew and friend. Oh by the way, I ride a Harley and have a tattoo 🙂
Thanks Mike. I love you brother.
2 thoughts on “Somewhere Over the Rainbow: Light, Acceptance and Life”
Grateful for trailblazers and for the difference decades make, in tolerance, acceptance, treatment. One pill a day. Many paid the price to pave the road we now walk. #dallasbuyersclub #oscars