Awareness creation,  Disabled Bodies,  Personal Accounts

Disability has so many Diverse Definitions: What we need to know about Muscular Dystrophy

It’s the first time to share the story of my life on a social media platform. I’ve never had the confidence to but yes, like they say…there’s a first time of everything. My name is Mary Chege, I was born 29 years ago, and in a few months’ time I’m going to be 30. I’m a second born in a family of five children. I’ve three sisters and one brother and I’m the only one who suffers from Muscular Dystrophy (MD) in my family.

 

 

MD is a disorder that is genetically passed from parents to the child. It’s a group of diseases that causes progressive weakening and loss of muscle mass. The disorder differs in which muscles are affected, degree of weakness, how fast they worsen and even the time the symptoms begin. The abnormal genes interfere with the production of proteins needed for health muscles. Due to the weakening of the muscles, many people will eventually become unable to walk and handle other activities even the simplest of tasks like feeding, making hair, toileting, bathing and dressing. There are nine main types of MD and over thirty sub-types.  Personally, I’ve Limb Girdle Muscular Dystrophy (LGMD). It affects both upper and lower limbs.

 

 

I was born like any other child and there was no sign of any disorder. Mum tells me I was a bit slow from the beginning, I walked when I was almost two years. My childhood was like of any other child though I was slow in doing things which was not a big deal since some people are naturally slow. I started schooling at about four years and my primary school life started off well in a regular primary school near home. I was a smart kid, always among the first three pupils to lead the class whenever we did an exam. At round 10 years, my parents could notice I was getting more slower although I never felt any pain. At about 11 years, I started falling though was not so often at this point and also climbing staircase became a challenge to me though I  could still do it. At this age my parents decided to seek medical advice. I was taken to Bethany kids at Kijabe where a lot of tests were done. The doctors there would send us to other different hospitals like Kikuyu and Kenyatta National Hospital where more tests were carried out.

 

 

After so many tests by various doctors they came to a conclusion that I had MD. Meanwhile at home, some friend were advising my parents to take me to be prayed for and even consult a witch doctor an idea that my parents rejected which brought some kind of enemty between then and the advisors. The doctor at kijabe explained to us that there was no cure for the condition and that the weakening could only be slowed through a lot of body exercises. While in class 6 and 7, I would be taken for those exercises at Kijabe though we stopped since there was no visible improvement noted plus we didn’t have money for transport to and from hospital so often. In class 7 and 8 my feet would swell for no reason and I would miss school for days as my parents wouldn’t let me go to school with swollen feet. Falling down was more frequent at this point. In class 8 I never attended school for almost the whole of third term towards K.C.P.E.  When it was the time for the K.C.P.E the then head teacher of the school sent some pupils to my parents that I should go to school for K.C.P.E of which I went and did. Walking wasn’t yet a problem to me. In primary school, my fellow pupils were good to me though I could still get those stares probably because of my then walking style.

 

 

After primary school, my dad said I would not go to a secondary school that he would instead take me to other hospitals to see if I could be treated. This was not that he didn’t want me to get education, but he cared too much. I was the apple of his eyes and he didn’t know how I would survive in high school with no one to help me and he didn’t want me to suffer. He loved me way too much to a point my siblings would complain that he didn’t love them and mum would just comfort them. I then told dad I want to go to school after mum encouraged me to. I joined Joytown Secondary School in Thika in 2003 of which I studied without many challenges. The only challenge was paying school fees considering we didn’t have money plus my other siblings were in school too. I could still walk though with a limp but couldn’t climb up a staircase. Falling was so often plus when I sat or fell I needed help to get up. Somehow by the grace of God I finished high school in 2006.

 

 

After form four I did a computer course like many do and at this moment I had proved to dad I could handle school like any other person.  At first I wanted to study mass communication but that was not to happen, God had planned for something else for me. I joined Machakos Teachers’ Training College in October 2008. It was then becoming too difficult for me to walk and I started using a wheelchair then. It wasn’t very difficult for me to accept because in my mind I always knew it would come based on the explanations given to us by the doctor at Kijabe when I was young. I also got some counselling by a lady I found at APDK (I can’t remember her name) on accepting my situation. Being on wheelchair meant I needed more help on handling things and it wasn’t all easy. First year was fine for me but the more people help you sometimes they get tired and it’s normal. I really struggled towards the end of second year, no one to help me out at times. I could cry all night long but God never left me. Something good is that I’m so likable and I had good friends who never left me. I remember one night I went to bed early, listening to people talk about me and I was so frustrated and angry with life and I cried myself to sleep without knowing who was going to help me the following morning especially because it was a weekday. To my surprise, a friend from another hostel woke me up very early the following morning telling me we should prepare for classes, I pray for her to date. One thing I don’t understand about myself, I could still be able to smile at people despite what was happening to me. All in all, I was able to finish college in Aug.2010.

 

 

After college I rested at home waiting to graduate, which I did in March 2011. After I wrote job application letters to all the institutions around our place but couldn’t secure a job. I wanted to further my education and thus we went to Kenyatta University to apply. Later I received an admission letter but again there was no money, we couldn’t afford the fees so I didn’t go. Towards the end of that year, I got a call from a school that needed a teacher of which I went and taught there for one term though it was a bit far from home. I was to be accompanied like one kilometer then board a bus. Come Jan 2012 I got another call from another school that needed a teacher and so I left the first school and joined this one since it was very much near home. I taught there for about nine months then got employed by Teachers’ Service Commission in October of the same year.

 

 

Now I had some constant income and could afford paying my own school fees. I joined Mount Kenya University as fees was a bit considerate in December 2012 for a school based program. The campus Special Education Head of Department tried convincing me to take special education but that wasn’t in me then. I wanted to be in a regular school since we do have special need learners integrated in regular schools, I wanted to serve as example to those kind of learners. I studied during holidays and I graduated in July 2016 with a Bachelor of Education in History and Kiswahili. In campus I had no many challenges since I had my own assistance who was so kind. The only challenge was at the beginning where like all the lectures were happening upstarts and had to fight to get the class I was to attend held on a ground floor room and the gates widened since my wheelchair was wide and wouldn’t go through. It was a struggle but finally they did it.

 

 

My job pushes me to wake up early and go interact with my learners, they take away all the life’s stress even if for a while, I love what I do. The learners love me and am grateful every staffroom I go to, I always get wonderful colleagues, and I am always ready to offer a helping hand. Over the time I’ve learnt several lessons. First, I’ve learnt to fight for my rights as long as I can and also to appreciate all the helping hands that come my way. Secondly, I’ve also learnt to accept the situation that am in and love myself first. I know everything happens for a reason and I believe things happen in a way that God planned for them to happen. Thirdly, I’ve learnt to live a day at a time. As a person with MD, thinking of how life will be in the next few years with the progressive weakening of the muscles can be quite depressive. Fourth, Overcoming our fears brings more joy. I’ve had many fears, like I feared going to a crowded places due to the stares from people but with time I got used to that. I feared matters sexuality but now I’m over it. Currently, my biggest fear involves childbearing. I fear the fact that MD is a genetic condition that I might pass to my child or if I decide not to get my own, will I be denying him/her a chance to live and enjoy the many things life has to offer? However, I’m working towards overcoming this fear together with my partner. Lastly, I’ve learnt to only concentrate on the good side of every situation. Yes, am human and am bound to breakdown at time but after I try finding the silver lining of every situation, it brings peace.

 

I live by one motto, “As long as there’s life, there’s hope.” It doesn’t matter how weak my muscles get or the things I can do or not do, as long as I’m breathing I have hope that tomorrow gonna be a better day.

#Mary Chege®

One Comment

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