Welcome to my Reality

It is a curious thing that when someone has an experience of your own reality, they are not always enlightened by it. I have had a number of conversations lately in which the return to a ‘degree of normality’ was the main subject. It seems that a lot of people have really struggled with the lockdown. The several weeks of being stuck indoors, mostly, and not being able to freely travel, attend events, see family and friends, other than through video phone calls, has really had a negative impact for some. More than one person has asked me how I coped and then been left puzzled by my answer; this is no different to my lived experience for most of my life!

Being disabled through impaired mobility has rendered me largely sedentary. Yes, I can go out and do things, but I have to be careful. It is not a spur of the moment decision. Most days I do not leave the house voluntarily. My condition, Myotonia Congenita, causes my muscles to respond slowly and relax even more slowly after exertion. By exertion I am talking about getting out of a chair or climbing some stairs. The idea of running is a long-forgotten dream. Walking is painful but standing still even more so. I have had a number of surgical procedures carried out on my feet and lower legs, most of which have proven unsuccessful and all of which have exerted a toll. Also, due to my inability to respond quickly, trips and falls are a major concern. I am constantly observing trip hazards. Walking in crowds is very stressful. People do not always realise that I have a problem, even though I always use a walking stick to advertise the fact I do, and my muscles tend to freeze and go into temporary paralysis if I am suddenly jolted, which often leads to a fall and some more broken bones.

The urban landscape is not generally considerate of people like me. Steps into buildings, narrow pavements, uneven or slippery surfaces, fast traffic and equally fast pedestrians all make walking in a city something of a challenge. I can do it, although I seldom do so on my own. It is usually tiring, even when I plan frequent rests. When I get tired everything gets harder. Pain is also exhausting and mine is chronic.

So, it makes sense to stay indoors really. I have grown quite used to it. I joked, back in April, that I was actually trained for the lockdown. I think that this is true. My sedentary ways have resulted in me spending a lot of time on my own. The majority of my interests can be pursued in a solitary fashion. I do not find it difficult to fill my time, in fact, I cannot remember the last time I was bored! For me, the lockdown period passed quite normally. I wrote a book, designed new covers for my other novels, did some research, learned to cook some new dishes, revamped my website, watched movies, read books, watched television, listened to music, and did some artwork. It was all really fun and surprisingly relaxing. The curious thing about it is that several people have assumed that just because I am physically disabled the lockdown caused me some mental grief as well! Although I appreciate that they are showing a degree of concern in their assumption they are also revealing an equal degree of ignorance. Back in my school days there was a presumption that a person who had a physical disability suffered a mental one as well.

Society is not naturally inclusive, and I have adapted to that. I have my coping strategies developed through a lifetime of experience of being on the margins of society in a physical sense. It seems that when people who lack a similar experience are placed into my situation of social exclusion then they suffer. I can understand that. I can also empathise with it. I am not a bitter and twisted individual looking to punish everyone else for the way life turned me out as a disabled person. Indeed, I am happy to talk about why it is that the lockdown changed very little in my life; that insight might benefit others. I would also like to think that when society does return to normal then people may also prove to be a little more thoughtful about those of us for whom such normality has been neither engaging, welcoming, nor inviting in the past and make it more so in the future.

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