What living with a painful degenerative nerve disease since childhood taught me

I am a successful working woman in Mumbai and the fact that I am orthopedically challenged does not define me.

I did not have a particularly enjoyable childhood. I did not have a lot of friends growing up and my family was mostly trying to grasp what the issue with my development was.

They were extremely worried because my growth spurt was not the same as the other children. My motor and sensory skills were gradually deteriorating whereas my parents’ concern was aggravating with every passing day. Even though it was tough, my parents were my pillars of support at every step of my life.

How I was diagnosed
It was my uncle who finally asked my mother to visit the doctor and get me checked. That is when I was medically diagnosed with hereditary sensory-motor neuropathy. I was given a string of medications, be it allopathic or homeopathic. We visited a lot of orthopedic surgeons and reputed doctors for consultation. We were aware that there wasn’t a cure for my condition but the only factor towards betterment was physiotherapy or exercise. 

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In fact, I was told that I will be bedridden by the age of 25 and that is where my life would come

The sense of alienation…
I had a sense of isolation when I would see everyone else in my school play games, run around, and develop friendships because of this. I felt miserable because I could not even so much as dribble the basketball. I was not able to run and was left behind on my sports day.

I distinctly recall this one incident which left me shattered and made me realize that I will never be able to be normal. I was in the 10th standard and my principal asked me to get a differently-abled certificate so that I could sit for my board exams. In the midst of all the 15-year-old hormonal teenage emotions, I was thrown off track by his words. I could not help myself from breaking down. I had to enroll in a decent college close to my residence since I could not commute too far. 

The turning point!
Everything seemed to be different when I joined college.

I noticed that college did not require games or sports to be the one factor that helps you become friends with someone. The people around me actually valued my input as a perfectly normal individual because I was creative and had the brains required to complete the tasks assigned to us. I got comfortable with my college friends because they stood by me through every situation I had to deal with. I had the most affectionate and caring group of friends who motivated me to bring out my A-game. 

When I started working, a lot of my fellow college mates joined me. It was a blessing because I had a wonderfully positive work environment. I could not have asked for anything else. My colleagues would accompany me on my way to the bus stop and would always take care of me. It becomes easier to thrive in such a supportive set up and do your best. My seniors would appreciate my work and even ask me to train other people so that they can turn out like me. 

I was offered a very enticing job opportunity but I was apprehensive to take it up because it was an hour away. All my friends showed up at my house and told me uncountable ways to reach my office. My father readily offered to drive me back and forth as well. I was overwhelmed with the kind of love I received. How could I not have taken it up?

Here’s what I have learnt so far…
There was no scope of recovery for me but there was plenty of room for steady stamina building. I would regularly switch up my diet and exercise schedules. It is crucial to accept that your health is waning and then work hard to maintain it.

At this point today, I have no regrets in my life. I have lived every moment to the fullest because of all the love I have received. My parents are 60 now but they still give me massages on tough days. I am proud to say that I have hustled and explored my potential. I am the financial backbone of my family as well as an active decision-maker.

Also, listen:

It is essential to always believe that whatever phase you are going through in your life will pass, no matter how tough it is. As long as you have a nurturing support system, absolutely anything is possible.

I have recognized my weaknesses and I adapt myself to those in due time. I have overcome my state of pity with my resilience. Always take good care of your health and keep moving forward with a smile on your face. You will soon realize that with love and determination by your side, there is no looking back.