May 28, 2013
20 years, 20 years, 20 years ... the words and images race through my mind. There was a time I thought I'd be dead before my oldest child reached the age of 7. This year we celebrate his 18th birthday. There was a time I thought I'd be dead and wouldn't need to worry about growing old, debt or finances, long-term relationships and other non-related health issues. There was a time when AIDS and HIV consumed my every waking thought, action, goal and outlook. Today HIV/AIDS is something I live with; it doesn't define who I am. There was a time when I fought publicly and proudly, standing in solidarity with other PWA's, ready to fight every new discriminatory turn and glance ... 20 years, 20 years, 20 years ... 20 years I survive this infection with a virus that has made itself comfortable in my bloodstream and has literally nested in my brain.
Somewhere in the past 13 years, I took a solid break from HIV. I just lived my life. I was noncompliant with my meds. I did the bare minimum in taking care of myself or staying in touch with a community that I had found commonality within. I moved out of the health care worker circles that had so graciously cared for me and lifted me up. I made renegade choices that only today can I see the lasting implications on my life.
Today I'm back, crawling as it may be, not yet ready or able to run, barely able to walk. I start my new life as a blogger for TheBody.com. I hope selfishly that my own online sharing, my new coming out, my personal re-entry into the fray will help me to continue to heal and continue to face my own demons.
I hope that somewhere along the way I'll remember to find the humor in all of the craziness of my life. I don't want these blogs to be too depressing but the truth is that most of my life and the reality of HIV/AIDS is actually very depressing. As I blog more, I'll delve into the reality of neurocognitive issues and my own daily survival with AIDS dementia.
For all of you wondering how the 20 years overall has been for me, the overall outlook is really bright because as my new UCLA AIDS specialist Dr. Ardis Moe recently told me, "Let's just take AIDS off the table. You're not likely to die anytime soon. That's the good news." My psychiatrist, Dr. Timothy Hall, would most likely attest that the bad news is that someone forgot to clue my brain into that news and for some reason it stalls me, secludes me and scares me into acting like I'm dying or that I want to die. Dementia-induced bipolar or dementia-induced depression can do that. It's like living with a brain injury where your brain is stuck in a Ferris wheel of despair and each time you reach the bottom the ride the operator will not let you get off the ride; he forces you back up to the top again where the cycle repeats and repeats. Currently it's taking a lot of concerted efforts by my family, a few close friends, a network of doctors, specialists, counselors, AIDS service volunteers and staff to keep me in check and to force me calmly forward and onward.
For the first time in almost 13 years, I am trying to be compliant with my meds. I am really, really, really trying. The new cocktail I am taking is working but the daily reminder is still often too much to bear. I know that med adherence, a very common subject for many readers, will definitely be a subject for a separate blog entry. For me it may come up repeatedly. We'll have to see how it goes I guess. There's no real reason why I struggle so much with taking the damn meds. Sometimes, my depression gets in the way and my anxiety causes that brain of mine to think all kinds of negative, unwelcome thoughts while literally freezing me into inaction.
I take more pills to battle those demons too, but as of this writing have yet to find the best combination that works for me with the least side effects. It's a long daily work in progress. Sometimes I just don't want to take the pills. I, like so many others, look for the light at the end of this tunnel. Don't misunderstand me. This is a journey that I know I am lucky and fortunate enough to still be walking and trudging along. I believe that this is a path that some Higher Power has created for me, a merciful God who wants me to keep moving forward and find the light of joy and life. There's a reason I'm still here. It can't be because I'm so much fun to be around.
People ask me what gives me strength and joy. It is easy for me to answer that. My kids and my husband give me light. They give me strength. They give me joy. They give me hope. They also give me plenty of grey hairs and worry. Their lives have been drastically affected by the choices I have made and the ramifications of those choices. The lasting effects of living with a wife and mother on disability with a chronic infectious blood disorder and a messed up brain can't be fully understood unless you've shared similar experiences.
Up until today, we seemed to be battling HIV in silence, although our dearest friends and family members are aware of my diagnosis. My husband Tony and I raised our children with a steady hand and a calm unshakable will to exert normalcy and maintain the status quo. Moving forward, in my choosing to live, in my choosing to fight my brain and all the mixed up chemistry it wants to use to overwhelm me, I'm going to try to examine the good, the bad, the ugly, the in between and hopefully find things to write about. My kids and my husband are each comfortable with me being public again and they each know they may at times find themselves referenced in the content of my blogs. I have promised to be gentle and loving in my prose. In a separate entry, I'll look at the issues that surrounded our need for privacy for all these years as well as my newfound freedom and sense of release in coming out again as positive.
I'm truly hoping that writing will bring me personal peace and utility. Writing can let me open my mind to the infinite possibilities and dreams. Just imagine a life without HIV, a cure within my lifetime, a future to gravitate to and dreams that are so big they can light up the night sky.
I hope you'll join me and connect with me on this blog. Let me know your thoughts, comments, questions or concerns. Let me know what you want to hear about. 20 years is a monumental thing to me. 20 years and I'm still here and I'm back!.
Now let me see if with my demented brain and injured memory I can figure out the path for the next 20 and beyond: one step at a time; one crawling baby step.
Lynda Arnold, RN, BSN, MBA, was one of the first health care workers to go public after her occupational infection with HIV by an accidental needlestick in 1992. After the birth of her youngest son, Lynda chose to step away from the public eye.
Read Lynda's blog, Get Outta My Head, You Crazy Virus