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Through the eyes of a caregiver

Mama Blessing, a caregiver to a child with Cerebral Palsy highlighting challenges facing caregivers of children with disabilities in Mathare

by STEPHEN OMONDI

There is a lot that goes into being a caregiver. A lot of things that would seem so ordinary to ordinary folks but often to most caregivers it is complex. There’s a lot that I could talk about in my journey as a caregiver. First and foremost I’d like to point out that no one ever is really prepared for the tasks you have set out before you and all too often you become too drawn in that you do have to take a step back and often remind yourself of the intricate balance between what is in the realms of the achievable and what is in the realms of the improbable or impossible. There’s a lot I’d love to share with you pertaining my experiences as a caregiver, so here goes something…

My name is Eunice and at the age of twenty years, my brother got involved in a horrific road accident that led to him getting a spinal cord injury which resulted in the total loss of the use of all his four limbs. Mike was always the funny, naughty and cleverest of all of us. He had that ability to light up the room with his well-timed humor and charisma. I spent most of my childhood envying him and wishing I could be just as he was. I lived in every sense of the expression, under my brother’s shadow and image. So when eventually the heart throb of the family was involved in this accident, our world became dark and in that moment we knew that nothing would ever be the same. Mike spent 12 weeks in hospital and in those twelve weeks there was always the premonition of doom that lingered in our lives. I for one, loathed every single time my phone rang, for I thought that the person on the other end of the line would deliver bad news to me. That phone call never did come, and after three months, Mike was discharged from the hospital and I moved back to my parents’ house to help in taking care of him

Tragedy changes you in ways that you never see coming. There is a thin line that often separates laughter and pain, comedy and tragedy, and for Mike, it took an accident to change him from the happy, chirpy fellow we knew to the soulless, depressed and drained person he now was. Now we are a well to do family. Our parents both had very well paying jobs and that is something I will always be thankful of because Mike’s condition requires a lot of money to be spent on taking care of his needs. Mike always loved independence and loved doing things for himself and it was thus very difficult for him to have to rely on other people to do the most basic and intimate day to day activities such as bathing, eating or even going to the toilet. We brought him an electric motorized wheelchair to help in his movement. The challenges we have encountered with Mike are many to say the least.

We tried to get Mike to go back to school but the only thing Mike ever wanted to be was an Engineer. He had dreamt it all his life, worked hard right from Primary school level to high school and eventually went to the top ranked university in the country to study Civil Engineering. Now to those of you in the know-how of how technical the civil engineering course is, you will know that it requires a lot of physical activity that Mike would simply not be able to do after his accident. On top of that, the facilities at the school were not so accommodating to persons with disabilities. For example, they had some classes which had to be accessed through the staircase and there was no alternative to get there like an elevator. The toilets did not also take into consideration persons with disabilities as there was not enough space to accommodate a wheelchair.

There was also the health issues, apparently you would be surprised to know that not so many hospitals in the country have special disability facilities, and thus it has been a headache to get him to the hospital whenever complications arose. With a quadriplegic, there is always a lot that goes into taking care of them health wise. You have to look out for the tiniest of signs which may turn out to be fatal. Like for example a urine infection as a result of the tubes they use to discharge their waste, sore spots as a result of lying in one position for so long and most importantly their mental health. Being quadriplegic is a blow partly due to the fact that the first thing that people notice about you is the fact that you can’t walk or use your arm. In their heads, I know there are some people who do genuinely feel sorry for the plight that Mike is in, and there are those whom you can see that are genuinely pleased that such a dark and miserable fate hadn’t befallen them. Believe me, we have encountered all types of mockery that was so dehumanizing that I got to understand why this had changed Mike so much. We once got stopped by a guy only for him to ask Mike how it felt to know that he’d not have sex for the rest of his life. I almost lost it then. There have been some days that have been better, where Mike seemed like his old self even if it’s for a brief while. For me, once people know that you are a care giver, they assume that you have nothing better to do with your life or that you were so academically inept, that the only thing that could suit you is to look after another person.  The stigma that comes with disability is something that we as a society should be ashamed of.

This experience has brought me closer to my brother though and has enabled us to bond at a level we never thought we would. I never thought that I would ever be connected to him as I am now, and I am proud of how far we have come as siblings. We still do have the occasional sibling fights and I always have to keep up with Mike’s constant mood change. There are times when all he wants is to be left alone, because the whole world can become your enemy when you lose what you love. Yet there are days he is our Mike again, humorous and charismatic. This experience has shown me that we often neglect the plight of persons with disabilities and often when we try to help, we do so with an attitude of trying to do what we think is good for them as opposed to asking them what they would like.

We are still struggling to help Mike live as comfortably as he can and to also get him to pursue other dreams. It is a work in progress but we’ll get there. For people in the same situation as Mike, and to a larger extent, persons with disabilities, here is something for you. You only get one life. It is actually your duty to live it as fully as possible, even in the realms of tragedy.

Steven Omondi is a student at the Technical University of Kenya.

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