My days starts with a smorgasbord of problems arising from my body’s ongoing bout with Friederichs’s Ataxia. I can now do less than ever. Friederichs’s Ataxia has restrained every muscular movement in my body. It’s been a problem for me for decades and is the persistent problem of my life.
Now I cannot even see. And to not see is a blight on my communication. It’s a terrible challenge to my life pursuits. The truly horrible form of blindness is what this individualised mode of Friederichs’s Ataxia has left me.
So how do I limit these problems. Trying to deny the problems will only add to the confusion and despair that this disease wants me to have. So then how do we act? Do we try our best against these overwhelming odds? I look back and see that in hindsight as I have pushed back against the multiple odds, there has been, in many cases, gratifying pats on the back and that in some spirited ways seems to have helped me fulfill life’s journey.
My writings have tried to develop the need for many people with complex disabilities to hopefully find justice in my rants and ravings. People are tolerant and I’m thankful for that. But we also need to take into consideration Friederichs’s Ataxia and its effect on my life. For example, I have the need to tell people but the understanding of my plight and the knowledge of how far I can go will always burden me. Why me? Where’s the answer to that?
I also tend to think that people with severe and complex disabilities like mine are only heard from on rare occasions, so I believe my calls for justice are needed and should be heard. So I continue banging away. Yet, complaints from those with severe disability are rarely heard because when complaints and severe disability progress, they can do so together and, as in my case, that makes it even more difficult to speak (Speak? ha!) up. Having a severe speech impediment makes communication close to impossible, which can and will live on into moments of deep despair.
Communication and People with severe and progressive disability
Friedreich’s Ataxia is the name of my disability which as a name it assists me to call attention to the plight of people with communication problems. All people with Friedreich’s Ataxia struggle with communication problems in their early lives but having Friedreich’s Ataxia at my age creates a significant number of even more complex communication complications. It is so hard for me now because basically my sense of reality has shifted, making me think that speaking up is pretty futile and unable to cope with what is presently happening in the world, let alone in my own body and the immediate 2 inches in front of my twitching nose!
Friedreich’s Ataxia it is so unbearable to focus on the problems and lead a life, but then what do you do if you are thrown into such a messy situation with its transformation of every single one of my bodily functions?
I have spent a lot of time typing articles for my blog, but presently due to blindness and deteriorating Dysarthria I have been left in an this awful black – what-am-i-supposed-to-do-now? – position. Basically, I have to dictate my work to my academic support workers, and this is so hard to do because most, or nearly everybody, cannot understand my contorted speech. Too many people, this proclaims a basic futility, as this is simply the confirmation that I have been dealt a life that is unjust, unfair and unequal and inequitable. How is it, that in these later or are they final stages of Friederichs Ataxia I am to go on living? I wonder if I am living through the antithesis of what is normal to most of society.
For example, on what basis can you judge a person, if that person cannot be judged because they cannot communicate their views? This is the big problem many people with Friederichs’s Ataxia in the later stages are faced with. It is definitely, not a simple problem, but rather a complex problem, with no simple solutions.
It is so off the edge to have Friederichs’s Ataxia in these later stages. Most people who have to live with this cursed Friederichs’s Ataxia only systematically live not much beyond the age of 40. So, if you are of the age of 40 there is only a limited number of places to go, and a limited number of days left. But I passed that milestone years ago. I have even gone passed the half century. Friederichs’s Ataxia unfortunately lives on, but most are enticed by this life-sucking system when they are young adults. But there is much more to Friederichs’s Ataxia than being a young adult. Friederichs’s Ataxia has the capability to progress to a severe and horrifying state, like mine.
Dear reader, I have just typed this up. Will you think it is nonsense? But it is a problem I have stumbled upon. I hope it sheds light, some light, for you. Please indulge my efforts and try to cop this as the outcome of my efforts to still try to make sense, even of this senseless disease.
Thank you to Dani, Amanda, Lina and Sarah for being beautiful people in their assistance of me in finishing this work. A big thank you to Bruce Wearne in all his work that has helped bring me to this stage.
I talk about social issues and disability in my book, 6 and a ½ Years on a Dunghill: Life in Specialist Disability Accommodation.
You can also order directly from me.