People with severe and complex disabilities are only heard from on rare occasions so I continue banging away

Friedreich's Ataxia has affected every muscle and movement of my body. For decades it has been the persistent problem of my life. As the years go by I can do less than ever. Now, I cannot even see. This truly horrible form of blindness is what an individualised expression of Friedreich's Ataxia has done to me. Not being able to see is a blight on my ability to communicate and a terrible challenge to my life's pursuits.

My day starts with a smorgasbord of problems arising from my body's ongoing bout with this heredity disease. So how do I limit my problems? Trying to deny them will only add to the confusion and despair this disease wants me to have. So then, how to act? Do I try my best against these overwhelming odds? I look to the past and see that, in hindsight, as I have pushed back against multiple odds, there have been, in many cases, gratifying pats-on-the-back that have helped me fulfil my life's journey.

I hope my writings – my rants and ravings – have helped many people with complex disabilities find some justice. I have a need to tell people about my plight, my understanding of it and the burden it puts on me. They are tolerant and I'm thankful for that. But some questions have no answer. Why me? Where's the answer to that?

People with severe and complex disabilities like mine are only heard from on rare occasions, so I believe my calls for justice are necessary and should be heard and I continue banging away. One reason complaints from those with severe disability are rarely heard is because when severe disability progresses, so too do our complaints: they do so together and therefore, as in my case, it becomes even more difficult to speak. (Speak? ha!) up. A severe speech impediment makes articulation close to impossible, creating moments of deep despair.

Communication and people with severe and progressive disability

Friedreich's Ataxia is the name of my disability. As it is a known disability, these words assist me to call attention to the plight of all people with communication problems, whatever the name or origin of their disability. All people with Friedreich's Ataxia struggle with communication problems in their early lives. At my age it creates a significant number of even more complex communication complications.

Now that I am older, my sense of reality has shifted, making me think that speaking up is pretty futile. I'm unable to cope with what is happening in my own body and the immediate two inches in front of my twitching nose, let alone what is presently happening in the world. Friedreich's Ataxia is unbearable. What do I do when every single one of my bodily functions is transformed? How can I focus on my problems and also lead a life?

I have spent a lot of time typing articles for my blog, but now, due to blindness and deteriorating dysarthria, I have been left in an 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 hard to do because most of them, nearly everybody, cannot understand my contorted speech. To many people, this reveals a basic futility: quite simply the confirmation that I have been dealt a life that is unjust, unfair, unequal and inequitable. How is it, that in these later – or are they the final? – stages of Friedreich's Ataxia, I am to go on living?

It is so "off the edge" to have Friedreich's Ataxia in its later stages. Most people who have to live with this cursed disease and its disabilities do not survive much beyond the age of 40. So, if you 40 or older there are only a limited number of places to go for help, as well as a limited number of days left. I passed that milestone years ago. I have even gone past the half century. Most people suffer through this life-sucking disease as young adults. But there is much more to Friederichs's Ataxia than affects those young adults. Friedreich's Ataxia has the capability to progress to a severe and horrifying state, like mine.

I wonder if I am living through the exact antithesis of what is normal to most of society. For example, on what basis can you judge a person, if that person cannot communicate their views? This is the big problem many people with Friedreich'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.

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 at least some light for you. Please indulge my efforts and understand this as the outcome of my efforts, even now, to try to make sense of this senseless disease.