Three years ago, after dealing with my “Inclusion Body Myositis” for 14 years, I landed in a wheelchair full time. A serious fall that left me unconscious for about 15 minutes, took me to the hospital's ER. I have a very vague recollection of the incident.
After talking to my doctor about the fall, he advised me to start using a wheelchair in order to avoid a serious fracture in my already brittle bones.
Even though I had 14 years to get ready for the news, the wheelchair "pill" was a difficult one to swallow. A tsunami of questions came to my mind all at a sudden. What’s going to happen to my social life? How was I going to take care of my personal hygiene, grooming, and many other tasks that everybody takes for granted?
Shortly after leaving the doctor’s office with my husband Denis, I was overwhelmed with sadness. I felt defeated, How many friends would stay in my life after hearing these news? How was I going to break the news to my elderly parents? What impact will this situation have on my marriage?
I remember hiding in my hoodie, bowing my head, and feeling very sorry for myself. This news was very difficult to digest. I needed time to sit and try to bring peace to my mind once again.
We bought a wheelchair. I was surprised and delighted to discover that there is such a thing as a purple wheelchair, my favorite color. Denis pushed it everywhere we went.
I remember the first time I used the wheelchair, my friend Lisa was visiting from UK and she wanted to see The Metropolitan Museum Of Art. We agreed on a time to meet and Denis and I were confronted with the new task of navigating the city in a wheelchair. We hailed a cab, and Denis managed to figure out the sequence for lifting me out of the chair and into a taxi, then finding a way to get the wheelchair to fit in the trunk of the cab. (Some cabs have room for a folded wheelchair, most DO NOT). We managed to arrive at the Museum right on time. Our next challenge was figuring out the right sequence to safely get me out of the cab and into my new wheelchair. Mission accomplished.
As the taxi drove off, we realized something was wrong. With all the new challenges, concerns, and new information to process, one of the "leg rests" was missing. Somehow, the leg rest was left behind in the back of the cab.
Our maiden wheelchair voyage would not be ruined however. As it turns out, the Metropolitan Museum of Art has their own fleet of wheelchairs for visitors to use. Denis ordered another leg rest and we had it in less than a week.
Over a year later, an excited, Spanish speaking man rushed up to us in our neighborhood. He was our cab driver on that fateful day and remembered us and had been holding on to the leg rest for over a year. He proudly presented us with the missing leg rest (so now we have a "spare") New Yorkers are AMAZING!
My wheels became my legs and Denis my personal caretaker.
To answer some of the questions that I mentioned before, my social life changed completely, fighting with a serious depression, my outings to bars, visiting friends and going shopping by myself, among others activities, came to an abrupt stop. I felt isolated, frustrated, anxious and fearful of how I was going to reconstruct my “broken” body and the negative view I had developed about myself. It was obvious that after all my friends except Otto, left my life, I was on my own and the process of redefining myself started.
I always defined myself by my looks, a shallow outlook on life but very satisfying to my ego. I was handsome, strong and very social. It was time to understand and embrace my real essence, the beauty that doesn’t fade, the compassion for myself and the understanding that I still have a long life to live. It was up to me if I was going to give up or redefine the image I had about myself in order to restore my inner peace and personal confidence.
My husband Denis became the answer to many other questions in my life. He pushed the chair until I managed to get a motorized one. He feeds, bathes, and grooms me. He takes me to my doctor appointments and anywhere else I have to go.
It's taken a while but after five years or so, I was healing emotionally. My will for life was coming back and the fighter that always resided in me took control of the situation. The redefinition of myself was finally happening.
The architectural barriers in my apartment building have been a major problem. Up until 2009, I was able to slowly and carefully manage to get up and down stairs with help from Denis. That changed in 2009 when, even with Denis helping me, my legs buckled beneath me and I tumbled down the stairs. We sent a letter to the Board of Managers of our building requesting a ramp. The request was ignored until we contacted the NYC Human Rights Commission in 2012. Long story short, a wheelchair lift was finally installed and became operational in September of 2014, over five years since my first letter to the Board. Having the wheelchair lift has made my life much easier.
Once the situation was more under control, I told my parents about the extent of my disability. As always, my parents were very supportive and loving.
It was time to face the outside world again. I learned how to maneuver my motorized wheelchair and found out about a New York City program called “Access-A-Ride" that would take me and Denis anywhere we needed to go, within the city limits. Mastering the process of getting me and my motorized wheelchair on and off public transportation has been very, VERY liberating, making it easier to venture out of my own neighborhood and rediscover the city I love. This has totally changed the image I had about myself. Any old image of I had of being a "cripple" has been substituted by compassion and love for the man that I was becoming.
New friends showed up in my life, real friends that are supportive, compassionate and empathetic with unconditional love. My marriage became stronger, the bond between my husband and I grew and became the most powerful tool to keep on fighting.
I realized that I was a very lucky man when I became my own "Pygmalion" (google it, lol). I carved a new Felix and fell in love with my work of art.
Before I finish this article, I want to share with you the key to my success, the answer to fear is love, the enemy of sadness is hope and peace of mind and the feeling of gratitude will give you the power to redefine the meaning of life. Don’t give up the fight, take your time to heal, don’t get stuck in what it used to be and look at the future straight in the eyes and scream, “ I can and I will”.
Sometimes in life there’s no other option but to be brave!