Alana Nicole Sholar: Living An Exceptional Life With HIV


How did you react when you found out you were HIV positive?

First, I’d like to share where I was at that point in my life to help give some understanding as to why I reacted to the news of having HIV the way I did.  I am a transgender individual born in Kentucky in the early 1960’s.  As explained in my memoir, “Hung in the Middle: A Journey of Gender Discovery,” I had no idea why I was ‘different’ from all the other Kentucky farm boys and had lived my life in hiding – even hiding from myself, not wanting to admit there was something ‘wrong’ with me.  It wasn’t until my late 30’s that I learned the word ‘transgender’ and realized that was the answer to ‘me.’

Once I made the discovery for myself that I am a transgender male-to-female, I had to tell my family.  I figured that would be the most difficult task I’d ever have to face in life.  However, I was wrong, because within a couple months of coming out as transgender, I then had to tell them I had just been diagnosed as HIV positive.

For me, the first sign was bruising.  When my doctor tested for a possible cause, he informed me the bruising was the result of a blood disorder, but additional tests were necessary for an exact diagnosis.  I had an uncle who died of leukemia so I got it in my head the additional tests would reveal I had leukemia.  I immediately began getting myself prepared mentally to be told I had leukemia with very little time to live. 

But then I got the call from my doctor who said, ‘it’s HIV.’  I was prepared to be told I had leukemia and would be dying soon, but I wasn’t prepared to hear ‘HIV.’  I wanted to be dead and not have HIV.  Being told I was HIV positive was worse than if I had been told I had leukemia.  Then, on the heels of being diagnosed with HIV, I was diagnosed with yet another life threatening disease – Cryptococcus antigen.  Although rare in humans, what made it ‘life threatening’ for me was my low immune system caused by the HIV.  I couldn’t handle it.  I decided taking my own life would be the best answer.  Of course, I wasn’t successful at that attempt, and the entire experience is detailed in my memoir.

After an extreme series of medications I won the battle against the Cryptococcus antigen, but, for months I continued to clean and disinfect everything I touched – the toilet seat when I’d stand up, the dishes and utensils I’d use when eating, I even quit taking showers with my wife.  I was afraid of infecting someone close to me.  It took nearly a year before I finally understood what my doctors had said over and over – having HIV is NOT a death sentence, and people are more of a threat to my health then I am to them.

Did friends and family treat you differently?

No not at all! My mother was just happy it wasn’t leukemia.  When I told her I’d been diagnosed with HIV the first words out of her mouth were, “Well, you can live with that.  Magic Johnson has had HIV for years, and he seems to be doing pretty good.” (Thank God for Magic Johnson’s example.)  I found myself being more couscous with my friends than the other way around.  I was the only person who seemed to have a problem with it.

I look back and think how crazy it was for me to think death was my answer.  Now I look at my grandchild, wife, family, and wonderful life and I am really happy that I managed to make it through to the other side without doing something stupid.  Look at all the things I would have missed out on.

How is your health today?

My health is great.  I take my meds as prescribed, have learned the importance of positive thinking, and today the HIV virus is undetectable via blood test.  If I get hit with a cold it might take me a bit longer to get over it, but any problems I do face are small and easily handled.  My blood work has impressed my doctors. 

People are afraid to be tested and there are others who don’t take HIV seriously because it is treatable.  What is your advice for these people?

Getting tested is the best thing anyone could do for themselves.  Like any disease, the earlier you realize you have a disease, the easier it is to control.  I had never been tested prior to seeing the bruises and then it was almost too late.  When the initial blood work came back I had ZERO blood platelets and my doctor told me if I got so much as a small cut I would bleed to death before I could ever reach a hospital — there would be nothing anyone could do to stop it.  Of course, it was being diagnosed with HIV and getting on the right meds that brought the blood platelets back to normal.

Not taking HIV serious is a HUGE mistake.  Once diagnosed with HIV life changes in many ways.  For one thing, I feel it’s very important to tell possible sex partners that you have HIV.  Not telling someone before having sex with them is wrong and something I would NEVER do.  Also having HIV makes you more prone to inopportune infections – infections that are no big deal to someone with a proper immune system.  What many people don’t understand is that it’s not the HIV virus that people die from but things such as pneumonia or other complications which are dangerous for anyone with HIV because of having a compromised immune system.

My suggestion to anyone who thinks HIV is ‘no big deal’ would be for them to talk with someone who has been diagnosed with HIV and is living with it.  Also, if you read the info proved with the meds being used to treat HIV you find they can be hard on your system.  So if you think HIV is no big deal, think again.  Yes, you can live a good life after being diagnosed with HIV, however, you’ll never live the ‘same’ life as before being diagnosed.

I’d also like to let you know Chapter 1 can be read FREE and videos from various events can be viewed, as well as my “Interview with the Author” video at www.hunginthemiddle.com.