My 'Long and Winding Road' of Life With a Rare Disease

Accepting the idea of being in a wheelchair was a very long process.

The journey of my disability is a long and winding road, starting years ago when I had the feeling one afternoon that something was wrong with my muscles.

I was working out at the gym. I had a very disciplined routine of working out for two hours, three times a week. The results were showing and I was very pleased with them. Slowly but surely, though, my body lost strength, my muscles began to feel tired and my doctor sent me for a biopsy. The doctor in charge of the process took two biopsies, one from the right bicep and one from the upper part of my right leg.

In a couple of weeks, I received the diagnosis of having “myositis.” Myositis means inflammation; in my case, it was attacking my muscular system.

After consultations with too many specialists, we found my condition’s name, inclusion body myositis. It is an auto-immune disease that affects the muscles in your body. It disintegrates them due to inflammation and other mechanisms, rendering them extremely weak. This condition is rare and very little is known about it.

After being diagnosed, I went back to my beloved friend and doctor, Russell. My first question after he explained what was happening in my body was, “Am I going to end up in a wheelchair?”

His answer was very polite, “I don’t know, Felix, but we have work to do; there is a possibility that this inclusion body myositis could be caused by HIV. If that’s the case, maybe switching your medications would improve your condition.”

That was very nice to hear. Russell always had something positive to say. No matter what was going on with my health, Russell was there with his expert advice, hope, and a farewell kiss on the cheek.

After changing the medications, we saw no improvement. My inclusion body myositis apparently was not HIV-related. My viral load was undetectable, my T-cells were in the 800 range and my percentage was good.

After seeing many more doctors, it was obvious that my condition was making me weaker. It was affecting my balance. I began to fall more frequently. Tasks that everybody takes for granted started to become more and more difficult. I was struggling to go to work, falling in the streets and falling asleep from exhaustion after teaching only two classes. I knew then that my art teaching career of 15 years was coming to an end.

In 2005, I said goodbye to my job. This was a low point for me. My professional life was going to be cut short due to an illness. To make things worse, I lost my beloved doctor, Russell, who unexpectedly died that same year. I fell into a deep depression.

Depression by itself can be a very debilitating disease; adding inclusion body myositis to the mix put me in bed for nearly five years. My situation seemed unbearable. I would sleep 12 hours a day, stopped any grooming rituals, lost my appetite, had frequent crying episodes and had no energy whatsoever.

Since 2005, my strength has declined. My left arm became almost paralyzed and walking became a challenge. The degeneration was slow, so I think it gave me the time to accept my reality with dignity and self-love after I got my depression under control.

In early 2012, I had a serious fall in the street. I hit my head and became unconscious for 10 to 15 minutes according to my husband Denis, whom I had recently married. I ended up in the ER. Fortunately I had no concussion, nothing but a very bruised and saddened ego. I have no recollection of anything that happened, other than the loud observation while under medication that the hospital staff were not as pretty as the characters from “Grey’s Anatomy.” Apparently I made some very unkind statements to the ER folks, certainly inappropriate at the time, but very funny now.

In 2013, I ended up in a wheelchair. It was very difficult to move freely in the house, and my fear more than anything made it impossible to walk outside anymore. My situation was critical, but there was a light at the end of the tunnel. I have invested my life in the search for love and that gift was given to me 18 years ago, when I met Denis. He quit his job, and has been taking care of me. He does all the things I can’t do anymore. He feeds me, bathes me, dresses me, grooms me and I’m very well taken care of.

My family is very understanding and supportive of my health condition. I still have a few very close friends. I also have the conviction that in the moment of truth, when it will be time to say goodbye, there will be living angels holding my hand, giving me the peace I need to depart happily. Meanwhile, I live and keep on fighting.

Thanks to my HIV and inclusion body myositis, I have finally realized that I am a human being worthy of love. My path, even though bumpy at times, will leave a trail of kindness in this world, the mark of a fighter whose battle fueled him to live, love, and be grateful for the simplest things in his still-beautiful life.

More than ever, I’ve realized that every day is a gift, every day is a challenge to be conquered. I am, against all odds, still here and still very much alive.