This will sound crazy, but I was looking forward to writing this post. Yes, I’m introducing a new Face of ALS, and that sucks. It’s always hard to do, and every single time, I wish I knew these people for a reason other than our ALS connection.

But this woman you’re about to meet is pretty amazing. Rebecca Hayden was diagnosed with ALS in 2012. At this point in her progression, she types with her eyes and requires assistance with nearly everything, and yet, she is often able to keep things light and see the comedy in her circumstances.

If you don’t have ALS or aren’t as progressed as Rebecca, her posts might be a little shocking. With any serious illness, there are hard moments and there are tears, but it’s important to remember that even with all the changes and challenges, this is still someone’s life. And there is always joy to be found. Rebecca is really good at finding it, with an incredible support team of friends and family to help her. “We laugh a lot,” she wrote to me.

Here are a few posts from her Team Hayden Facebook page:

Feb 3
I peed on the cat, but it was his fault.

Feb 2
We decided to move forward with hospice. I get to keep all of my equipment, including my external ventilator. I do not have a DNR. I am not giving up; I am just adding another layer of support. No tears.

Feb 2
I never expected to hear my friends say:
-If you pee on me, I will kick you.
-If you bite me, I will punch you.

Jan 12
Rest assured, dropping me on my head or forgetting to buckle me in the car is ok. My life insurance doubles if I die in an accident.

May 2
My caregiver, Teresa, is an extraordinary person. Taking care of a terminally ill patient can’t be easy and many duties not fun. She comes every day with a smile and great sense of humor. I never consistently brought that attitude to any job. Regret! Oh, she saved me from choking—actual turning-blue-choking—today. Much love.

Apr 21
Why yes Teresa, I did think I could spit out the vitamin e and hide it from you.

This is real life with ALS: horror, humor, and emotions that don’t even have words to describe them. Rebecca smiles a lot, but she also shares posts of being afraid, of missing out on activities with her kids, of thinking that maybe she can’t do this anymore. But she IS doing it, and she’s even finding ways to laugh in the process. That’s why I’m pleased to introduce her, even though I wish she was off skiing with her kids, her ALS nothing but a distant memory.

And how about this post?

Mar 20
I recently told Tim I wanted my last months to be extraordinary. later realized this meant watching Reid play lacrosse, listen to Karissa read to me or laugh with Kaila. They have made my life extraordinary.

More about Rebecca Hayden here.

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