“I’m a 55 year old man and I dreamed of becoming a doctor in my childhood. This dream come true when I became a pediatrician in 1992, despite both poverty and war in my country. I worked very hard to make pediatric care in this region much better.
In 2008, when I was 47, in the prime of my life and a successful career, destiny struck me with the terrible neurological disease called ALS (Amyotrophic Lateral Sclerosis). It started with paralysis of my right hand and progressed insidiously to all my limbs by April 2011. I stopped attending my office and hospitals and stayed permanently in bed. Before that, I was still going there on my electric wheelchair, using the last three fingers still working in my left hand.
Two months later, I became totally paralyzed with severe shortness of breath and I had to choose between the grave or having surgery. I made the decision to undergo a tracheotomy for improved ventilation and a gastrostomy for a feeding tube. I was expected to live maybe one more year to watch my children and my garden grow. I’m still surviving, but without any movement or spoken words.
Despite this, my life continues with positive thoughts and I take an active part in what I can still do. I have my eyes, my heart, and my mind. With those, I connect with the world using a computer controlled by eye movement. Using my eyes, I can move the cursor on screen, like others can do with their fingers or a mouse. Where the human body stops, technology continues.
I was depressed from the first moment of diagnosis, overwhelmed with negative thoughts, and I didn’t see any point in my life. I felt alone, even when surrounded by family and friends. I worried that I would always be a burden to those I love, especially to my wife and three children. Then, I asked myself: “Am I going to withdraw like others might do, or am I going to live?”
I decided that I would live with dignity and without shame. Every time life showed me one reason to quit, I showed it a thousand reasons to go forward and continue. My disease stole my movements, so I used my mind and technology. My disease stole my speech and my smile, so I now communicate and smile through my eyes.
Thanks to this technology, I started writing on my Facebook page and my blog as a way to share my experiences. I initially wrote four books, in French, letter by letter, using just my eyes. I translated all of them to Arabic and English in order to reach more people. So far, nine of my books have been published in three years!
Given the prior lack of organizations helping care for ALS patients in Lebanon, I worked from my bed to establish the Lebanese ALS Association (LALS) , the first in the Arab World. From my bed, I ran my Facebook page, chose the leadership, wrote the goals, and built up the website in 3 languages (Arabic, English, French), while writing all of its content.
My life is about bettering the lives of others, being part of something bigger than myself, and making a positive difference. I couldn’t even imagine the good that awaited me when I refused to give up. My life is an adventure and I choose to fill it with faith in God, giving, love and happiness.
I want everyone living with ALS to know that I’m just like you from the inside, but I had to go out of my comfort zone. I had to stretch myself beyond where I was and to reach where I wanted to be. Reaching out to people in this way brings awesome rewards. If I truly succeed, it’s also because I’m surrounded with great love and support from my wife, my children, and my friends. My goal in life is to hear someone saying: “Because of you, I didn’t give up.”
Jamil Zogheib, M.D