The Pandemic is a Taste of ALS

Full disclosure: my therapist came up with this idea, but it’s brilliant, so I’m stealing it. Don’t worry, I’m a thief with morals. I will give him credit along the way.

The beginning of COVID was so chaotic, it’s hard to say what came first. Was it the rush on hand sanitizer and toilet paper, the masks, or the dreaded quarantines?

I realize this is a controversial statement right now, but as someone with a compromised immune system, I am all for masks and quarantines. However, that doesn’t mean the isolation of quarantines is any easier to deal with. I know one woman who, after being forced to work from home for several months, started dressing up as though she was going to the office. We all cope with the isolation the best we can.

The isolation ALS has caused is crippling. It has taken my career and interactions with co-workers and students. How can I teach middle school being nonverbal and totally immobile? I miss the little things: chatting with other teachers about the upcoming school play while checking my mail in the lounge, grading papers together, and listening to my students’ deep breathing during my guided meditations.

Then there’s the loss of church because I sleep through services. I especially miss how people of all religions came to my church. We were all together in one place (we attend/ed a Unitarian Universalist church if you’re curious). I sleep 18 – 20 hours a day, so I also miss support group meetings. In fact, I don’t know a single other person living with ALS.

Of course, all this affects Evan because where I go, he goes. He also misses services and support group meetings because he has to stay home and watch the ventilator – the machine that breathes for me – and give me food and medicine through my feeding tube while I sleep. He had to quit a job he loved just to take care of me. And of course, no more trivia nights at the local bar with his friends. He’s a history buff, so he was a priceless member of his team. No, all we have now is each other. Thank God his parents live close by. I am scared to think of what we will one day do without them, but God willing, that will be a long, long time away.

Yes, my therapist was right. Both quarantines and the isolation of ALS are terrible. Both wreck our relationships and mental health. However, there is one key difference between the isolation of quarantines and ALS. Quarantines end, but ALS is forever.

* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!

If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a tax-deductible contribution to Rachel’s care through the Rachel Doboga Campaign at https://helphopelive.org/campaign/16990/

NOTE: If donating through PayPal is more convenient for you, you can still contribute that way. Just be aware your gift won’t be tax-deductible. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com

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