Reflect and Refocus With HIV

Well, this blog is long overdue.

It's World AIDS Day 2015 soon and the holidays are upon us. I just returned from the 11th annual HIV cruise retreat. It's taken me a moment to catch my breath and organize my thoughts as I truly found the experience both exhilarating and exhausting.

I have reflected on the past twenty-two years as a person living with HIV and the bottom line is that my experiences have made me who I am today. They have colored my world and forever changed my perspective. They have challenged me in ways I never believed possible and tested my faith on levels that my Catholic upbringing was not prepared to address. I wouldn't change any of that. I am forever grateful for the experiences and the people I have met along the way. This cruise was simply another vignette in that book.

I have a long history of activism but it's primarily in the past. It's a chapter in my life that I thought I wanted to keep closed for the most part. My husband and I had moved from Pennsylvania to California in part with the intent to live confidentially among the masses. I somehow figured I had done my part.

However, the people I met on this cruise, the stories I heard, and the moments we shared changed my mind and challenged my perspective. They touched my heart, stirred my soul and most times brought me to tears in my cabin. I was quiet in the groups, primarily an observer, but back in my room with my cabin-mate I was a babbling mess. I processed everything for the seven days. The good, the bad, the beautiful, the funny, the outrageous and the heartbreaking.

The population of participants on the retreat was an average age of 55. What started out as a heterosexual cruise for HIV-positive people and their mates had morphed primarily into a gay cruise. There were a few parents with their kids or siblings and a few straight people, but primarily there were gay men all shapes and sizes and nationalities.

If you sat back and really observed, you could see an evolution of the epidemic. You could also see the graying of the epidemic. My perspective was colored, however, by my young cabin-mate. She had been infected as a teenager and stood before me as a young woman. It truly gave me pause as I thought and continue to think ... we just didn't do enough. It saddened me. Deeply saddened me.

I believe and have always believed, preached, educated and shouted to the masses that HIV is a preventable disease. Her story ... her face ... her life ... it mattered. I quietly wondered about the younger gay guys on the cruise. Their lives seemed to be so needlessly affected as well.

Where did we fail them? Where had the lines of communication broken down? When had we missed that teachable moment?

As a mother of three, aged 20, 19 and 17, this sent me into a tailspin as I prayed fervently to know if I had somehow done enough with my own kids. They were raised knowing my status. I prayed for all the mothers in the world as I just kept thinking ... we are all someone's kid. No mother would wish this disease upon their child. No mother would want to welcome this devil into her home or her child's life. This disease should be over. This disease should be over!

With the advent of the newer drugs post 1996, and the fact that people like me are living with the possibility of near normal life spans, I believe somehow HIV and AIDS have become less important. It's not that the fear or discrimination or stigma is any less. No, I believe that's all still inherent; we just don't talk about it. We, as a society, bury our heads and look away. We support almost every other major disease publicly and proudly and without hesitation.

It's not the same with HIV. It never has been. It's been a bigoted disease from the start and if I die from an AIDS-related complication I believe that I will die with that stigma attached no matter how openly I have chosen to live my life. I accept that. However, moving forward, I resolve again to do my part because as this group reminded me the fight is not over and I am not dead yet.

Having HIV dementia is no walk in the park. The past few months my symptoms have escalated. In the new year I will begin another round of neuro-psychological testing as that's all they can really do. They test and test and test.

There are drugs to control some of the psychological complications but I am struggling with the side effects of those drugs. I am in physical therapy to combat the annoying motor difficulties that emerge. I am in counseling to help process my feelings related to all of this. My goals for 2016 are to find some additional ongoing volunteer work and begin singing with my church choir.

I am doing better with my antiviral medication compliance. Overall, I choose life and I choose joy. I choose education and advocacy and the opportunity to make a difference even if it's just one life at a time. I choose hope. My demented brain may not remember names, faces or even experiences as recent as a few days ago, but my heart and soul have been forever changed. This I know to be true. No amount of dementia can take that away.

This Thanksgiving, I count my blessings. Among them this year I will count my new friends from this cruise and I salute them for their courage and their tenacity and their hope and their joy, as the truth is they were not the ones crying. I was. If there was fear it was mine, not theirs.

I can conquer my fear and continue to use my voice and my abilities to make a difference. I can draw my strength from that collective group whether I got to know each of them individually or not. I'm hoping all of you will find a way to make a difference one life, one day at a time as well.

Until next time!

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