February 1, 2016
The holidays can be difficult times for many. Loss of a loved one, distance from family or friends, illnesses, personal struggles, etc. are all things that make the holiday times trying for many while others bask in the joy and warmth that the seasons of celebration can bring.
For me, this past holiday season continued to have me wrapped in the throws of a gut-wrenching depression. My doctor figures it has something to do with that hysterectomy I had in October and perhaps an escalation of my HIV-associated bipolar disorder which often accompanies HIV dementia even in the early stages.
I was started on hormone replacement therapy as well as trying new and revisiting old combinations of antidepressants. My weekly therapy sessions continued and slowly over the past few weeks I have once again begun to feel somewhat whole in my thought processes and have better control of my anxieties. I finally feel ready and well enough to even blog.
I haven't publicly stated what I think or feel about the news of Charlie Sheen's HIV diagnosis in part because his coming forward and going public not only confused me but saddened me. I watched the press coverage and his interviews on the Today show and then again most recently on Dr. Oz. I waited for that moment where I would see Mr. Sheen emerge as a public figure who could do some good in this battle.
I must admit through it all, I only see a sad addict with shattered dreams and a nasty virus and very human wounds. His lifestyle may have left him open to acquiring the disease. We can all argue that the women or men that he was sexually involved with have a degree of responsibility to protect themselves. But in the world of Hollywood -- a world I have come to know and both love and hate through the years -- the spin often overrides the real message of personal responsibility.
Instead of opening a national discussion on the very real benefits of Truvada as a prevention medicine and the importance of getting into care, staying in care and getting that virus to undetectable levels the media circus seemed to be more entrenched with the salaciousness of potential wrongdoings and shameful pasts of all involved.
I saw a man desperate for the cure. I saw someone, like me, wanting to be free of this disease. I saw a guy wanting to go off his HIV meds to test the system and his body all while doing it in the search for the cure.
I saw a man still deep in the throws of alcoholism and depression, illnesses that even mega-superstar money can't take away until that person is freely ready to release the demons that bind them. All in all, I thought there were many missed opportunities for education in that national outreach.
I know it spurred me on to look further into those issues of undetectable viruses and what that meant for my HIV-negative husband and me. I jokingly offered him my Truvada, but it wasn't a road my husband was willing to go down. I don't blame him. I've had some horrible side effects from Truvada and have now just switched it out of my regimen. I think the most difficult part of the whole Sheen story is society's general reaction to the news and what was posted in Internet chat rooms and forums. It was almost as if we were back in the late '80s or early '90s. There were hate and stigma and discriminatory statements to be found everywhere, and it's no wonder he was the victim of a shakedown or blackmail. Money can do things to even the sanest of people under the best circumstances.
Somewhere between my promise to myself on the HIV cruise to get active again and Mr. Sheen's coming out and my journey to battle this overwhelming depression, I began to volunteer. They say that volunteering will help you feel better because often you can see yourself helping others and doing good works and that in-turn will improve your mood. It can also help you to understand how another's circumstances are worse than your own and through that empathy you develop and display your problem begins to become somewhat manageable. I started small. I joined the contemporary choir at my church. I like to sing. I was a great singer as a child and teen. Even as a young adult I did a few shows at the local community theater and dinner theater. This group forces me to teach myself new music once a week, show up, practice and perform and I even have to sing solos at times. It helps me to work that side of my brain that needs help in puzzle solving and concentration. In some small way, music feeds my soul. Knowing that I am contributing to the congregation's enjoyment of the Sunday service does indeed put a smile on my face. I have missed a few sessions due to illness and fatigue, but I don't plan on quitting anytime soon.
I also began volunteering at the AIDS Project Los Angeles. Now this endeavor is a whole other ball of wax. I am a client of APLA, and I am grateful for their services but this time, I am on the inside looking out, and I can see that this is a huge AIDS service organization that has many clients needs to fill, and the gaps between funding and meeting needs are ever widening. The biggest need stressing the clients aside from getting those newly diagnosed into care appears to be an enormous problem with homelessness.
Clients who are homeless can't fully access the nutritional services they need. They can't access home health services. They have difficulty keeping medical appointments and adhering to a medication regimen. Housing that is safe, clean, medically acceptable and affordable for those with no income or low income seems to be an enormous problem that we in L.A. are only putting a band-aid on. Homelessness most often is a direct result of past or present addictions -- drugs, alcohol, gambling. It can be a result of psychological disorders left to go untreated or family structures that have broken down and friends resources that are just severely tapped out. To get a client truly into wrap around services (medical, mental health, dental, benefits management, education and disease prevention), the underlying infrastructure must be met. In my opinion now, that begins with having adequate and acceptable housing. I didn't know any of this before I began volunteering at APLA. I still have so much more to learn but each time I go in I learn just a little bit more.
My limitations with my memory and organizational skills due to my HIV dementia require me to be on my A game at APLA. My brain is challenged, and my peers and colleagues have to put up with my repeated questions even though they just answered minutes ago or witness me getting lost in the four-story building just navigating my way to and from the file rooms. My daily logs may not always have accurate entries and captures of the hours I spend with both clients and non-clients on the phone or in person. Magically, however, my self-consciousnesses with my limitations seems to disappear in this world where the population I serve have needs so far greater than my own. I don't know how long I will continue to volunteer for at APLA. My initial commitment is for three months. I think I may be there much longer as I do feel that volunteering has indeed lifted my mood and given me a sense of purpose and in some small way my old nursing skills in assessment, problem-solving and evaluation is utilized. Simply put, it feels good to give back.
As I write this, and we continue to go through these winter months, I hope my depression will continue to lift, and I can continue to find joy and hope in the smallest of things. I hope that I can celebrate my viral load being undetectable and that I can stay ahead of my anxieties. I hope I can make a difference. It's my New Years goal to try new things -- I just never thought in a million years that Charlie Sheen and volunteerism and my depression would come together, admittedly helped by medicine to move them along, to make my small little world complete. My challenge to you is to find those links in your life that will help you keep moving along one day at a time -- one minute at a time if need be. Thanks for reading!
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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. She successfully launched a nationwide campaign for safer needles in hospitals and medical facilities which resulted in the passage of federal legislation mandating the use of such devices in facilities nationwide to protect all health care workers from accidents such as hers. For many years she was a sought-after speaker on living with HIV/AIDS as well as health care worker safety issues, and she traveled the globe educating others. She garnered many awards, national distinctions, authored two children's books, and was the subject of an award-winning documentary. After the birth of her youngest son, Lynda chose to step away from the public eye and focus on raising her young family without the spotlight. As a blogger for TheBody.com, this marks her reentry into the public eye -- 20 years after her infection. She can be reached for further engagements, commentary and questions through her email.
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