How ALS Taught Me to Hate the Holidays

I used to love the holidays. My favorite part was finding or making the perfect gift to give each person I love. My best year, I wrote mushy poetry for Evan; found the perfect mystery novel for my dad; learned how to make a dream catcher for my sister, who was having trouble sleeping; sewed matching aprons for my mom and grandma (they were always in the kitchen together); and gave my best friend, who wanted to be a tattoo artist, a photography book of tattoos from around the world. 

Post-ALS, I can’t make anything, though I still write poems for Evan, and we can’t afford to buy gifts since we live off my disability and the kindness of family, much to my shame. That’s not the reason I hate the holidays though. It’s not even because of the distance between me and my family so I can go to one of the nation’s top ALS clinics. The separation is especially difficult this time of year. No, it’s because of this dirty word – “coverage.”

It’s a rough time of year for people on ventilators and their families because we have to have someone awake at all times to listen for the ventilator alarm, and our regular overnight caregivers are often unavailable on Christmas Eve, Christmas, and New Year’s Eve. This means Evan has to stay up all night and take care of me during the day. Thank God Evan’s parents are willing to stay up and split the night with him.

The search for coverage starts in October, with my mom helping out by calling every Medicaid and private pay agency in the city again and again over several months until we find someone willing to take at least one of the nights. And God forbid it snows. I used to love the snow, especially as a teacher. Snow days were the best. Building snowmen that my dog would tackle, baking delicious vegan chocolate chip cookies… It was all wonderful. Now all snow means to me is Evan staying up nights on end because caregivers can’t drive on the icy roads (our city doesn’t salt the roads). We have a caregiver who rescued us during a snow storm last year with her big truck so Evan didn’t have to stay up two nights in a row, but she’s slowly leaving us. I am scared to think of what we will do without her.

I know my motto is hope over fear, but I’m afraid of so much right now. Caregivers leaving, snow, spasms, and so much more. However, my best friend made me a wonderful offer. She said, “I’ll hold the hope right now while you’re afraid.”

It’s nice to know my hope is somewhere safe waiting for me.

* 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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