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Why Fear Is the Most Powerful Threat I'm Facing With My Disability

Have you ever wondered when you are sad, if writing about it will help you find peace? I have, and it has been my experience that spending the time, effort and contemplation of expressing these feelings, definitely helps. I’m not unfamiliar with sadness. Like every person with a chronic illness, I have my long dark nights when I feel like I’m wandering around, lost in the dark. I am bipolar, so sadness can be a bit difficult to battle. Like I have mentioned before, besides being  HIV positive for 30 years, I also have a rare, progressive, neuromuscular disease called inclusion body myositis. This chronic illness is an autoimmune condition that attacks the muscles in my arms and legs.

Five years ago, I landed in a wheelchair after a bad fall in the street, where I hit my head and became unconscious. Since I ended up in the ER because of it, I decided to deal with the fact that it was time to use a wheelchair. It was not easy, but I managed to do it. After a period of adjustment, I have pretty much accepted the fact that I might never walk again, nor have the independence I once had. My life has changed completely. One more time, with the support and love of my caregiver and husband Denis, I conquered another bump in the road.

We found out we are eligible to get a new wheelchair every five years. Last week, we went for an evaluation for my new wheelchair at a specialized seating and mobility clinic in a prestigious hospital not far from our home. We talked to a neurologist and after explaining that my condition has deteriorated, we discussed the few things I still can do in a normal daily routine. Every morning, my husband takes me to the bathroom. I still can walk if he holds me. I feel very proud that I can still groom my beard, shave, brush my teeth and wash my face by myself.

When I stood up this morning with his help, I noticed I couldn’t keep my torso straight. The upper part of my body was bending forward. Denis got scared and I realized most likely, my back muscles are so weakened, that one day I will not be able to maintain my back in a straight position. I have noticed that my back muscles have become weaker a couple of months ago when I tried to roll over in bed and my body didn’t respond. My neck muscles are weak as well, I can’t raise my head in order to watch TV while laying down. The incident this morning was a bit difficult to take.

I have dealt with sadness successfully, but this morning, I was dealing with fear. The kind of fear that comes when you are reminded your body is deteriorating. What is next? I started thinking about my paralyzed left arm, my already challenged right arm, my disabled legs and most recently, the fear that my throat muscles are weakening to the point that I have to drink water after every intake of food. Otherwise, the food gets stuck in my throat. I have a lot in my head at the moment, and this morning’s incident put a dent in my inner peace.

Fear is my number one enemy these days. Fear paralyses me. It makes me lose all confidence, and my heart gets heavy in a way that it hurts every time fear strikes. What to do now? Where I go from here? At this moment, I must realize that I have no control over the deterioration of my body. I also know that fear by itself is a different story. I can desensitize my fears. I have done it before.

There are things in life that can be challenging, we all have been there. When it comes to obscure chronic illnesses, that feeling of fear comes from the impossibility of knowing how bleak our future might be. Once again, when we try to wonder what is going to happen, and we let fear sneak in, the outcome is going to be murky. I have realized already that before anything else, I must deal with my fears. At this moment, I have to ponder a bit about fear itself. The dictionary defines fear as “an unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat.” Fear is not always a negative thing. Fear by itself is part of the human survival instinct. It tells you when to be guarded, and it definitely can save a life.

So, what is the most powerful threat I am facing at this moment? I believe it is misguided fear — the kind of fear that can complicate every situation. In my case, it’s the fear of becoming bedridden for the rest of my life. There it is — the root of my greatest fear. At this moment, I must remember the most insightful, poignant statement about fear, when President Franklin Delano Roosevelt’s proclaimed, “The only thing we have to fear, is fear itself.” That comment was a timeless observation. Fear is an old acquaintance of mine. It kept me in the closet for 23 years, living in a place where I was humiliated and bullied on a daily basis for being gay. Fear made me waste precious time that I could have used to better myself, instead of feeling sorry for myself.

The answer at this point is to be proactive, and understand that every day that we fight against a chronic illness, is a day we can enjoy instead of drowning in despair. I now count the reasons to be happy. I remember that I have always lived my life intensely and the deterioration of my physical body is part of my journey. I will not let fear stop me again from living my life. That is not an option anymore.

We humans have a strong capacity for hope. Sometimes we hope even against all odds. I reclaim my power to live without fear. This power has fueled me in the past and helped me through the most pivotal decisions of my life. Sometimes in life we must jump out of the nest, trusting that we can fly. Fear will not complicate my present, because I am committed to live every second trusting the unpredictable miracle of life.

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