Razia Mohamedali

Little did I know how MS was to change my life that fateful day in December 1994 when I went to see a Neurologist in Nairobi…

Looking back, now, I started presenting symptoms of MS in the late ‘80s when I persistently used to complain to my regular GP about my overactive bladder which used to and still does, misbehave mostly at nights. At the time I was working full-time as a swimming teacher at a neighboring school which is within walking distance from my flat. The GP would always send me for a full test for diabetes which would predictably come out negative. After the results, my GP and I would promptly forget about it till another time when I would again get fed up of getting up umpteen numbers of times in the night. This also resulted in extreme fatigue – it still does.

After a few years of that, my legs started going numb and I would fall on our uneven and unpaved sidewalks whilst going to and from school. I just put it down to me being clumsy. Only when the numbness reached my ribs and I couldn’t feel my lungs inflate while in the swimming pool teaching, that I rushed to my GP again. He prescribed a two week course of Vitamin B complex and told me to go and see him if there was no improvement. Of course, there wasn’t and back I went to him and he referred me to a Physician. The physician sent me for neck x-rays, gave me a neurological examination and prescribed a muscle relaxant, which made me dopey, but didn’t fix my numb limbs. So, I discontinued them!

About three months later the numbness disappeared and I too, forgot about it. A while later I suddenly noticed a foggy spot in the middle of my right eye. I tried ignoring it but had to do something about it when it started growing in diameter and getting in my way. This time, I went to an eye clinic, which is run by American Ophthalmologists. They checked me out thoroughly and then told me that I had Optic Neuritis. They assured me that the condition would go away on its own and there was no need for any medication. I was very relieved to hear that, but they also asked me a whole lot of questions and then advised me to go and see a Neurologist as soon as possible.

The only Neurologists, and there were just seven at the time of my diagnosis, are all based in our capital, Nairobi. I am not very fond of the place and also didn’t have the time or the inclination to visit them, so as soon as my vision returned to normal, I went happily on with my life.

A few months later a couple of guys from Kenya Association for the Welfare of Epileptics (KAWE), came to our school to give a talk to the staff about Epilepsy. While they were describing the symptoms, some of which were so similar to mine, I felt that maybe I was becoming epileptic. So, at the end of the lecture, I asked one of them if an adult could become one. They told me that it was highly unlikely unless there had been an injury to the head at some point. But, he too, advised me to see a Neurologist for my weird symptoms and also offered to take me to one if and when I was ready to go to Nairobi and see one.

At the end of that year, during the school holidays, I was sent to Nairobi to attend a course for swimming coaches and that was when I decided to also see a Neurologist.

A whole gamut of tests later, for the first time in my life, I heard the name Multiple Sclerosis. Though, I did not know anything about it, the first question I asked my doctor was if it was fatal. He was very honest and straightforward with me and went on to enlighten me on this nasty disease as much as he could in the limited time available for which I’ll be eternally grateful. But, he told me to find a book on the subject in the local library and educate myself. I did and found only one book on the subject written in ’92 by a British Neurologist. At the back were addresses of all the MS societies in the English speaking world to which I wrote and I was deluged with literature on the condition!

At the time of my diagnosis I was living with my parents, but I am now alone. My father died in ’95 and the rest of the family is thousands of miles away. The only support I get from them is financial, from my brother, God bless him. I have to handle everything else on my own. I'm functionally blind in my left eye and also my hearing is impaired, add to that balance problems, misbehaving and overactive bladder plus the latest: My feet have gone numb up to my ankles. Fortunately I can still drive, but only in the daytime. I live on the third floor and have to climb stairs sometimes more than twice a day, in this heat and humidity, so if fatigue strikes it's not a joke.

I lost my job in early '99 due to this disease and there's no financial or even health support available from our government. In fact, this country is VERY handicapped unfriendly and most people have NEVER even heard of MS! I occupy my time with fighting for causes. And there are so many to be found around, you wouldn't believe. I've received special permission to display a laminated disabled placard on the dash of my car. Also, I managed to get ONE parking space at our countrywide major supermarket chains for the disabled and am now lobbying to get them to allocate more. Then, there was the question of standing in never-ending lines to pay bills. I wrote umpteen e-mails to the places concerned and now all disabled and elderly can 'jump' these lines and go and pay their bills without having to stand for long.

My latest fight is for a quiet environment and to start an assistance dog program here. This, of course, will involve other mini-fights with our government regarding legislation to allow these dogs everywhere. I'm quite looking forward to all this, too. In the process of all this, I've discovered that I have little time or energy left to lament my condition and limitations. I sometimes find that I don't know what the limit is until I've overstepped it and it's too late but to get horizontal for at least half an hour. I also have gotten into the habit of drinking ice-cold drinks at every opportunity.

My suggestion to others would be: Get involved, with all your heart and soul, in something worthwhile, which will make you, feel good. Take heart, my fellow MSers, and count your blessings for living in countries (those of you who do), where MS and the disabled have some rights.

I’m including some pictures of myself and some of the beautiful places in my hometown, Mombasa.


If you would like to contact Razia please send your message to info@msif.org and we will pass on your e-mail.