Life is a journey as we all know it and every day comes with its blessings and challenges. How you embrace it is what matters. We are all created in a unique way and not even identical twins have the same character in terms of behaviour.
Ever since I was diagnosed with limb girdle muscular dystrophy the more I turned down requests to go out with friends the shorter my list of friends became, one after the other they dropped me. It wasn't easy at first seeing the people you called friends stopping to communicate with you. My concerns were genuine though because I always insisted on going to social places that were disability friendly for me but such places were none existent at the time.
I could see my siblings going out and me being left behind, it was a lonely and depressing moment then but I do thank my family because to date they have been my greatest allies and I love them so much. As LGMD took its toll on me boarding public vehicles became another nightmare for me since in Kenya there is no single bus that is disability friendly and this made my movement to be more limited so after college getting a job was also tough. I lost contact with all my friends.
A few months ago I decided to take a taxi to the local mall, the trip was just okay for I did my shopping and went back home. My predicament came after alighting the taxi, the driver without looking at his rear mirror reversed knocking me down with the car luckily I got a few bruises. It was not the first time I used his services and I couldn't understand why he didn't let me get inside my compound before reversing. Since then I rely on family members, I plan my trips carefully and inform them in advance that I will need their services. MD is different from other disabilities because your muscles weaken and waste away so with just a light push you can go falling like a log. I always tell people to keep their distance.
In the year 2002, the urge of knowing more about my condition was my top most priority because when I was diagnosed back in 1996 my parents and I had no idea of what muscular dystrophy was and just like everyone else had been told that muscular dystrophy had no cure,the same thing my parents were told. The more I learned about MD the more friends I made, though in Kenya the first person I ever met with MD was fifteen years after my diagnosis.
To date all I can say to my new friends is thank you for being my friend, when I thought I would never make new friends, God had other plans because in the MD community more people keep requesting friendship. More disability awareness is needed so that able bodied people can know how to talk and approach persons abled differently. It is discriminatory to greet everyone and fail to say hello to someone in a wheelchair, this has happened to me several times but I hold no grudges.
MDA has touched many lives and am happy to say I am one of its beneficiaries because the information I got from their website is priceless, and I have been using it to create awareness about muscular dystrophy in Kenya.