This week marks the one-year anniversary of my infection with HIV. I have given some thought and prayer on how I should mark this anniversary.
Should I even celebrate the anniversary?
Should I not think the marking of it as a celebration at all – especially since it includes feelings of sadness, loss, anger, but then there are also feelings of much gratitude and hope…?
Should I celebrate alone or with others?
Saturday night I attended the 20th Anniversary Performance of Chicago's “Dance for Life” event. It was a beautiful and powerful performance by committed artists and dancers who believe in and support our fight to end AIDS. As the celebration began, the CEO of the AIDS Foundation of Chicago announced that it was not only the 20th anniversary of the “Dance for Life”, but also the 6-month anniversary of his becoming the CEO and more importantly the 17th year of being infected and living with the virus. People applauded wildly after he announced the 20th year for the event; but it came obvious that many did not know how to respond to the announcement of the anniversary of his infection 17 years ago. A few in the large audience applauded but many remained silent with most of them, I am sure, pondering how to respond to such an announcement – the anniversary of someone’s infection with HIV/AIDS.
How should I mark MY one-year anniversary and should I identify it as a celebration? Should I mark it alone or with others, at least with one or two who know and offer me much support in my life with HIV? As I lay awake on my bed at 4am Sunday morning, those questions entered the deeper part of my heart, mind and spirit.
I certainly experience much, much gratitude for the medication and medical attention I have been able to receive over the past year. I take daily medication that is keeping my viral load undetectable and CD4 count at a very normal and healthy level. It is very expensive medication and medical treatment, yet my work health insurance plan makes it possible. I am also especially grateful that our health insurance companies in this country can no longer deny me coverage for having a “pre-existing” illness in case I were to switch employment.
The gratitude, however, is mixed with much sorrow, sadness and often anger since there are so many of my fellow life travelers living with HIV/AIDS who do not have this access to medication and healthcare. In our country, which is the wealthiest in the world, many go without medications or easy access to care, and in the world many are still dying of a disease that is no longer fatal if one is provided with medications and medical attention.
My anger especially flares up when I hear so many people, mostly out of ignorance and close-mindedness, oppose expanding health insurance for infected individuals living with the virus (and all others who need it) through our recently adopted health care reform. I am glad “Obama cares” enough for us and millions others in our country who need to know they will now be able see a doctor and get needed medications, especially when they are in pain or worried about their health.
I have always tried to take good care of my body through a healthy diet, sufficient exercise and adequate sleep. During the past year this approach to taking care of my body took special significance. The medications and treatment cannot on their own keep me healthy as my body fights the virus on a daily basis. And so this week I am also grateful for the opportunities I have to keep my body fit and healthy. I have access to a gym, nutritious food, and a decent and safe house where I can rest and take care of myself. I have them because I have a good job that allows me such opportunities.
But again anger flares up in my heart and gut when I consider the many who do not have these opportunities today, especially a home or a job that allows them to take care of themselves and their chronic illnesses. As the rich keep getting richer in our nation and the poor and middle class lose more and more income on a yearly basis, homes and jobs seem to become much less available to many among us.
Finally, should I celebrate the experience that I nowadays have of having somewhat befriended the virus that lives within my body? I wish with all my heart it did not live there or in the bodies of any human being in this world. Yet it is there. And until researchers find the cure for HIV/AIDS, it will continue to be an intimate part of my body and life. I am reminded of that every day as I take my $50-a-day pill to keep the virus undetectable in my blood stream.
In a year’s time I have learned how to accept that I am HIV positive and to see opportunities for growth as a person, especially in hospitality and compassion.
I have worked for a number of years in the field that fights against AIDS and supports those living with the virus. But nowadays I have much more solidarity in heart and mind with them. I am one of them and with them today.
I have always tried to practice hospitality and compassion because of my spiritual faith. When persons are hospitable, they “makes room” in their lives for others. And there are so many ways to do so with persons living with the virus: by sharing our resources for the fight against AIDS like so many did last night at the 2011 Dance for Life event; or supporting directly infected individuals and families with much personal care and love; or not judging or stigmatizing them out of ignorance; or by working actively and politically for the resources and opportunities sick people need to remain healthy. I have always tried to practice hospitality in my life; but now that the virus lives within me, I am all the more committed to “making room” in my life for those who travel through this life with the virus in their bodies.
I learned a long time ago that truly compassionate persons are those that know how to suffer with others. The very word compassion comes from the Latin words to “suffer” (passus) and “with” (cum).
My spiritual faith has allowed and supported me to suffer with others in my life over the years. But now that the virus lives within me, I can accompany those infected by HIV/AIDS in a much stronger and closer way. I have and I am dealing with the fear, the anxiety, and the worries that this virus could one day compromise my immune system that keeps us humans alive and healthy. But I also share much more closely the hope and the dreams with other persons living with HIV/AIDS. Nowadays we may be able to live until an old age and enjoy life to its fullest. After the one year, I am all the more compassionate since I can suffer and hope much more closely with my fellow HIV positive life travelers.
Maybe one day before I die, the virus will leave my body through some type of cure. But until it does, I am learning to live with it. It is an unwelcomed friend. But it is a friend since it is making me a more hospitable and compassionate person in this life.
I guess I can celebrate the one year anniversary of my infection.
-- Thoughts from a Chicagoan living with HIV
[pics by ed negron. check out the rest on the lifelube facebook page]