Column – the pandemic and me

Submitted by Darrin Rein.

Welcome everyone to 2021! At times it seemed like 2020 would never go away and at the same time it is hard to believe 2021 is here already. I don’t think there are many who will miss it though.

If you asked me in April of last year how this pandemic has affected me, I’d have said not much has really changed except for the things that we all had to adjust to. Now, almost ten months into this pandemic, I would probably say the same thing, but let’s be honest, everything has changed. For those of you who don’t know me or just don’t know, I’m Darrin and I’m not an alcoholic. I have a disease called Spinocerebellar Ataxia but let’s just stick to calling SCA.  It’s a neurological condition that attacks my motor skill such as my speech, balance and my vision primarily. I am not here to get into all that but if you want to want to read about my story you are welcome to check out my blogs.

One of the biggest issues I have had lately over writing about my condition these days is sounding like a complainer.  I just like to tell it like it is and it seems like we all have something to complain about, especially now.  Do we all want to read about that?  I have been trying my best to stay away from it.  Those of you who know me know that I am pretty open about my condition. Lately I have been a little more reserved. If you ask I will usually tell but I don’t give up a lot of the details. Why? I am not really sure. I think part of me wants everyone else to be better so if I make it sound like I am doing alright then everyone else might be a bit better.  

I recently stopped a lot of my therapies. Is it because of the pandemic?  I want to say no, but it probably is. Maybe it’s because it’s winter and I am just a little sad that I can’t join all my friends on the slopes.  Going to physio for me was fun (except for going to the pool) and I actually looked forward to it because I still hope one day it will get me close to being able to sit-ski. It takes a lot more coordination than one thinks and that is something that my body just doesn’t want to comply with at the moment. Between March and May of 2020, I couldn’t even go to physio, which I didn’t think was a big deal.  But I like to be pushed and have someone pushing me.  So, when I went back there were all these guidelines we had to follow, which was to be expected. But encouragement in the form of an ATTA BOY smile and things like high fives and just seeing all the progress of others that were at the clinics was gone.  

Doing video conference calls for speech therapy sucked because one of the biggest self-conscious issues I have is the way I talk, especially over the phone and over Zoom. So, the focus during speech therapy went to more of a physiological therapy and how to deal with these things and further away from just trying to improve my speech. 

Once again, my eye surgery has been delayed because of the second wave. It was thought to happen for the first quarter of 2021 and now I will be lucky if it even happens this year. The prism I use in my glasses is extremely strong and while it does help me from seeing double vision and allow me to still drive it is exhausting. So aside from driving and things like that, my glasses are off.  That logic is about as clear as mud.

What else?  There is nothing that I can’t directly attribute to the pandemic, or is there? There are things that have happened lately and they are definitely not contributed to directly by the pandemic.  But it just seems like these things compound our feelings and reactions and we just blame it on the way things are now. Most of it is probably justified, some of it makes your eyes roll to the back of your head. I, like everyone else, want it to end and just go back to some normalcy if there was ever such a thing.