I was medically diagnosed with Friedreich’s Ataxia at the age of 14. I am now a 57 year old man, and I have made it part of my life’s mission to look at ways in which the progression of Friedreich’s Ataxia can be slowed down. I am a pragmatic thinker, and as such, I look at every aspect of my disability.
For this blog post, I will talk about something that is not often talked about. Something that many, including myself, find difficult to talk about for various reasons. It is unpleasant, embarrassing, but necessary to have this discussion.
There are a lot of complexities involving urinating — and these complexities are not isolated from my disability. The problems that develop from these complexities and the progression of Friedreich’s Ataxia, are in many ways, so complex that one has to talk about aspects of the problem as if they are completely separate. But they are not. They all impinge on each other.
For me, these problems can be seen as emotional, social, and even psychological. I am reminded of the old adage – “you can only do one thing at a time”. Nothing could be more truly said about this situation.
Many times, I need to be left alone when I urinate. I know this may sound irregular, given my disability and the procedures in place, but it is something that I require. I need the privacy of my own space in order to complete this task. It is possible that there may be others with Friedreich’s Ataxia in similar situations, or with similar beliefs. But as I said before, it is not a topic I bring up often – it is embarrassing to talk about this problem, a problem that may be seen as insignificant to many people. But it is a problem that needs to be discussed.
I can concede that some of the complexities of urinating, stem from psychology. They’re simple complexities: it could be too noisy, too smelly, the room might be too crowded, or I simply feel uncomfortable in the situation. But these complexities are also a manifestation of a bigger problem. So my question – also of myself – is this: why are problems that emerge not treated in a logical way. Why aren’t they faced openly with alternative strategies developed to mitigate the problem before it becomes an even larger issue shaping my life in all kinds of ways?
The emotional toll this issue has over me simply cannot be ignored either. I am not the only person who is affected by these problems, as I always need a support worker to assist me; I am physically unable to go to the toilet myself. Over many years, I have learnt to resist the urge to urinate throughout the day, so that I can limit the amount of times I need to go to the toilet. This means that I drink less liquids throughout the day, and only go to the toilet at a specifically designated time.
I have set a schedule that I strictly follow in order to limit my toilet time. This includes taking a laxative at night, and enemas in the morning, so that I can relieve myself at a particular time. I have set this schedule for myself so that I do not create extra hassle for my support workers. It is not easy for me and it is not easy for them – but it seems to me that such forward thinking and planning is what a person in my situation needs to do. My support workers shouldn’t need to cope with my thoughtlessness about my own body functions.
As someone in my position, this gives me more time to pursue the lifestyle that I value — focusing on academic pursuits, on being a friendly social guy, and engaging with the community. But it also means that I have to put in that much extra work to ensure that my body is healthy. And sometimes, it can be very tiring on me emotionally.
Many thanks to my friend and colleague Bruce Wearne, who has inspired me greatly in all my work and who has been my prolific ghost writer, my gratitude also extends to my phenomenal team of academic support workers. Firstly, team leader whose brilliance and courteous behavior has been a surmountable addition to my work, and additionally taking on the role as a ghost writer as well, Christina Irugalbandara whose work means so much to me. Daniella De Bruin whose brilliant and caring nature means so much to me. Also, Ikemi Ivara whose ability to command and control the situation with kindness. Lastly but definitely not least, Mercy Ndegwa who’s continually teaching me how to be a better person.