Struck by a crippling disease at 17, Asad Rafi was determined not to let a metal chair define who he was.
I was barely 17 when the symptoms started to appear: first, incessant back pain, then curvature of the spine and loss of balance, followed by weakness in my arms and legs and a lack of coordination.
Then came the diagnosis: I had a neurological condition called Friedreich’s Ataxia, a genetic disease that was causing progressive damage to my nervous system. I was an only child and my parents were devastated.
I was made to wear a special brace which was supposed to prevent further damage to my spine and help me move about. Even going to school had become a challenge. I had dreamed of one day becoming a sportsman, but now even something as simple as climbing stairs seemed impossible. The stairs at school became my greatest foe, but I persevered, moving around with the aid of a walker.
Just when I had finally adjusted, fate dealt me another devastating blow. As I turned 20, walking became extremely difficult. I was confined to a wheelchair and the doctor told me that I may never be able to walk again. The wheelchair felt like a prison, preventing me from where I wanted to go and what I wanted to do.
It was heartbreaking and frustrating and I could not stop questioning why this had happened to me, why my dreams and ambitions had been shattered. Being bound to a wheelchair after knowing the joy of walking wasn’t easy. But once I began to accept my fate, I finally realised that this wheelchair did not have to define who I was. I may have lost the ability to walk but no one could take away my hopes and dreams.
Fear was, by far, a more evil prison then this small metal chair. I was determined to not give in.
When I finally embraced my fate, the wheelchair soon proved to be a great source of strength. I can now say that this disease has proved to be a blessing in disguise as it has made me far stronger than I ever could be otherwise. I vowed to face each challenge that was thrown at me and not let my disability dictate how I lived my life.
Swimming was my first victory. It had always been a great passion of mine and I refused to set it aside even after I was confined to the chair. At first, it was daunting — a lap would be more than I could handle. But I was determined not to give up.
I have been swimming for over 30 years now and it has become a major part of my life. I can easily manage to swim 10 laps without any assistance whatsoever. Some may not consider this much of an achievement, but for me the pool is a gateway to another world, a place where I am not confined to a chair, a place where I can be free.
While learning to swim all over again, I wondered if it was possible to help others by sharing my story. I started speaking at events and schools, talking about my life and the fact that I did not let my disability define me; I hoped to inspire people and make them believe in themselves.
I have been a motivational speaker for about 5 years now and have spoken at Karachi Grammar School, Beacon House School, Aitchison College, CBM, IBA, LUMS and Kinnaird College. I also give talks at seminars, workshops and corporate offices like Unilever, Faysal Bank, GlaxoSmithKline and Dawood Group. I am currently also raising awareness about Friedrich’s Ataxia and advocating to make Pakistan a more wheelchair friendly country.
What I have learnt is this: when faced with an obstacle in life, it is important to have a positive frame of mind. To struggle for something is of utmost importance even though you may not achieve your desired goal. Life is unpredictable and lot of things can happen over which you have no control.
If you resovle to never give up, believe in yourself and have faith in God, you can fight against all odds. I think my life encapsulates this beautiful and profound saying: “In the midst of winter, I finally learned there was in me an invincible summer”.
The author can be contacted at [email protected]
Published in The Express Tribune, Sunday Magazine, March 11th, 2012.