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2020 through the lens of disability …

I was mostly at home this year, so maybe that was your experience too. This is not new to me as I have been living with chronic diseases since 2015. The essence of 2020 was our shared experience of staying compelled by circumstances beyond our control when all you really want to do is go out. As the stark reality of Christmas changed becomes more apparent, you may long for those heady days to live your life the way you want them to be. I remember when I could play tennis with friends, go to work, take a long walk in the woods, lose myself in the beauty of nature, or just frolic aimlessly. I could almost feel my heartache realizing that I would probably never do any of these things again. I’ve been in denial for so long, even though I couldn’t walk or speak, no matter going back to work. Eventually I learned to love the memories and be grateful that I could look back on those experiences. Before you barf / balk, let me tell you that I miss those times with heartbreak and sadness too. I am not sitting here thinking that you shouldn’t feel upset, depressed, scared, lonely. Or try to make you guilty for not having these feelings.

I spoke to a friend last week and complained that even after 5 long years with a disability I was not used to having severe relapses (in bed for days, barely functional). She replied that it wasn’t really about getting used to a disability. My friend was born with a disability and has had a lifelong experience of being frustrated and angry when she cannot do the things others take for granted.

I believe our collective understanding of how life is changing contains balm. Long before Covid arrived, I had given up explaining how changed my life was now. My (mostly) home-bound situation was completely alien to many, and I told people as much as I thought they could handle. To tell the truth, I think some people found my stories amazing and I was exhausted trying to validate my own experiences. In my frustration, I allow myself a certain amount of skepticism that I consider healthy, right? For example, consider the amazing endurance athletes who can handle derring-do performances. If you want a real challenge I would put you in bed alone a fortnight. This may feel like a blessed relief after her exploits at first, but believe me, the shine would soon wear off.

Don’t get me wrong, my life isn’t all bad. The past 5 years have taught me some valuable life lessons. I know exactly when to prepare for bargain hunting. DO NOT EVALUATE ME (it’s 12:15 PM). Over the years I have seen various television spectacles such as elections, Olympic Games, Brexit referendum and US elections, but they have come and gone. In contrast to the seemingly permanent COVID messages. I like to stay informed, but only up to a point. There is other news, life goes on around us. For example, which relates to a change in Long Covid’s rehabilitation recommendations. It was particularly interesting as there is no evidence that the most common symptoms of Long Covid are exactly the same as those seen in people with chronic fatigue. In short, the health advice was to do gentle, focused exercise to relieve fatigue, but this is not recommended now. Over the years I have heard people in the chronic fatigue community complain that this strategy is harmful. I’m sitting on the fence with it, if I can even step on the fence. Activity is a good thing, I can’t give any indication of exercising myself. Although I have to say that advising someone with chronic fatigue to exercise is like telling someone who is on fire to get better by putting their hand in the fire.

Our collective experience of 2020 reflects life with disabilities, be it a disability or otherwise. Your life is upside down, you get some relief from the pressure and you think it’s all over just so it comes back with a vengeance. So if you want my advice I would say get frustrated, but remember to take care of yourself. Even if that means lying under the covers and having a big scream. I see lists of useful phone numbers shared on social media. People share that they are stressed, angry, afraid, and lonely. I am living proof that it is possible to face difficult times. I kept telling myself that I couldn’t get around it, I had to go through it. But I needed support to learn compassion and understand what it means to feel vulnerable, which does not mean weakness. Please do not suffer in silence, reach out and get the help you need. Contact your GP if you need assistance. Doors may be closed but they are currently working on helping the community.

I want to close a personal note and thank you, dear reader, Brian, and everyone at Slugger O’Toole, and wish you all a Merry Christmas and a better 2021!

Akashskyprince’s photo is licensed under CC BY-NC-SA

Lisa Wells is a disabled single parent who lives in a rural village in Co Down. Hardly anyone can pronounce the name and only the residents know how to find it. She’s been writing a blog about indoor living for a number of years.

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