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The unbreakable January 9, 2009

Posted by nitinkarani in English, Gay.
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From The Mumbai Mirror:

The unbreakable

A genetic disorder had Dinesh Gupta nursing 14 fractures by the time he was 13. He recounts his battle against the brittle bone disorder and coming to terms with his sexual orientation

By Lekha Menon

Posted On Wednesday, January 07, 2009 at 02:06:06 AM
At the age of 35, I went to school! And it was at that ‘ripe’ age that I experienced the thrill of attending classes, making friends, going to the cafeteria and doing assignments – things that are a part of ‘regular, daily’ life for most people. But my life has been anything but ‘regular’.

I was born with Osteogenesis Imperfecta (OI), or brittle bone disease, a disorder characterised by bones that break easily, often from little or no apparent cause. As a two-month-old baby I suffered the first fracture when I merely crossed my legs. Four months later, I sustained another one. Between two and eight, I had many fractures – sometimes when I walked, at other times, when I simply turned in my bed! But these would heal in a few days. The severity of the disease struck only when I suffered a severe, extremely painful fracture to my femur (thigh bone) during a trip to Ludhiana. At eight, I was disabled for life – unable to stand or walk. By the time I turned 13, I had suffered 14 fractures on various parts below the waist (my upper body was thankfully intact). But it left me and my family completely disillusioned. I stopped schooling and was forced to complete my studies from home.

OI is a genetic disorder. I inherited it from my mom, a diabetes patient, who suffered a severe fracture at 40. One of my sisters and niece also suffer from OI, but they are mild cases. Since I was born a few years after my mother’s attack, I was severely afflicted. My last fracture was at 13; it happened while I was sleeping! Apart from the excruciating pain, the worse part about OI is not knowing when you will suffer the next fracture. At times, it can strike the same body part. Thankfully, my bones stopped breaking after 13.

But I was going through another turmoil in my mind.

The turning point

After I attained puberty, I realised that I was attracted to men. Puberty, in many ways, was a blessing for me, for it not only stopped my fractures, but also aided my sexual development. Though I had not realised the implications of being gay, I confessed my feelings to my sister who supported and counselled me. Being practically bed-ridden, my social life was negligible so I never really understood the situation in its correct perspective, until years later.

Meanwhile, my struggle and the urge to lead a normal life continued. Despite the odds, I managed to score distinction in the SSC and completed my graduation as well.

After my SSC, I decided to get operated to enable me to walk again. The surgery at Hinduja hospital improved my mobility to a great extent. Within a year and a half, I started walking slowly, albeit with the help of a walker. It was an amazing feeling – I was actually walking after a gap of nine years!

However, it was only after I turned 25, that I started walking around my society premises (with a walker). The sense of freedom it gave me was indescribable. I slowly started going out for movies, to the beach and the ISKON temple, saw the setting sun and other sights of nature.

During this time I also discovered my sexuality. I had a few relationships which gave me the confidence to confront my sexual orientation head on. I approached the Humsafar Trust, and the counselling and interaction changed my perspective towards life.

After my mother’s demise a couple of years ago, I decided to come out of the closet. Thankfully, my father and siblings accepted me whole-heartedly.

A new direction

Yet, I wanted to do something to fill the lacuna in my life. That’s when I turned to writing. I joined the Digital Academy to get trained in script writing. It’s probably the best decision I made. The three-month course changed my life. I attended classes and started socialising, and it reflected in my moods. Slowly, the depression that had been haunting me for over 20 years started giving way to optimism.

I have written a story on my life which I hope to publish some day. I also want speak up more vociferously about gay issues. While society’s perception towards gays has changed in the past few years, there is still some way to go. It is high time the law at least decriminalised it, if not legalise it.

Most importantly, I want to do something for disabled people. There are hardly any support groups for OI- afflicted patients in India. I strongly feel the need for one to be set up so that they are taken care of physically, mentally, and socially.

Not everyone is lucky as I am to have a supportive family. Even today, though my legs are far from strong, I try to commute on my own, at least for short distances. I have learnt to accept myself, my sexuality and my life the way it is. This, by itself, has made a world of difference.


 What is brittle bone disease

Osteogenesis Imperfecta (OI) is a genetic disorder characterised by bones that break easily. Most forms of OI are caused by imperfectly formed bone collagen (a kind of protein). There are at least four distinct forms of the disorder representing extreme variation in severity from one individual to another. Some features of an afflicted person are blue sclera, dental issues, small stature, loose joints and poor muscle development. Treatment for OI generally involves prevention or correction of symptoms. Care of fractures, extensive surgical and dental procedures, and an orthopaedic procedure called ‘rodding’ are the recommended options.
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