Article on disability by Win V. Pathak
“I was born on April 3, 1964 with Spina bifida occulta. But this was but only detected after many years. As a child I started to walk at nine months. The funny thing was that I started to walk at a early age but I kept on falling with regular frequency which was attributed to my eagerness to walk without being really ready. That this fact would be the cause of some muscular disorder which I would eventually suffer from was never even thought by anybody”.
I had no obvious weakness or difficulty walking, and I had no trouble getting up. As I grew taller, this problem was forgotten. As I had stopped falling easily and the issue was closed. But the problem continued to manifest itself – I could not squat easily and then get up from that position. My ankles were also weak and hence, I could not take to sports which involved fast responses. Doctors and friends alike thought that it was a case of plain laziness and nothing much could be done about it. So I took to activities which were more stamina based like trekking, rock climbing and long distance running. In spite of these difficulties I jumped into all such activities which I was comfortable. I was a Boy Scout and a good shot putter. In addition to this theatre interested me a lot.
I was skinny for most of my life till about 12 years and then suddenly I put on weight and muscles and yes, I was taller. Life was progressing in a perpetual high teenage, girls and parties. But soon problems started cropping up. When I was about 18, I found one day, that I could not jump.
This, I reasoned was due to my weight (180pounds) so I made a conscious effort to reduce, but the problem would just not go away. In fact it aggravated and I would easily tire after a game of table tennis or badminton. When I was appearing for my B.Sc (Physics) final examinations I came down with “Supposedly” viral fever which was 105oF for 3–4 days and then it was gone. This reduced my weight by 20 pounds in 7 days and I started to feel distinctly weak in my legs particularly the calf muscles. This was the point when the downward journey really started.
I was diagnosed for Limb–Girdle Muscular Dystrophies (LGMD) at the age 20. Here, I must also thank my mother (who actually is an angel incognito. She has made me look ahead with some confidence) Since she was aware that she would one day see her son in a wheelchair, she looked the other way when I went out for all night parties, had affairs and started drinking. Since I knew the end result, I plunged headlong to enjoy what life had to offer. To get variety of life I changed jobs at a very fast intervals and some of my friends were shocked with this, (they did not know of my LGMD). I have been a stock brokers trading floor clerk, insurance agent, investment analyst and portfolio manager, EDP incharge, company director and even a marketing and collection. In charge for a poultry feed manufacturer. Currently my physical condition has forced me to resign from my last job where I was manager operations in a leading stock broking house in Pune. I am currently involved with internet services through my own company “Plus Systems”.