Yet again, ALS is bent on attacking my sense of self. Because of my disabilities, I am stared at, belittled, and even infantilized almost everywhere I go. I’ve always had a thin skin, and this treatment feels like hundreds of papercuts. Stares make my face hot with embarrassment, and I am overcome with the need to hide from strangers’ gazes. It’s hard to believe I used to be an extrovert. The worst part of being in public or around strangers is the ignorant whispering that is just loud enough to hear…
“What’s wrong with her?”
“Can she even hear me?”
“What’s going on with her face? Is she even awake?”
Too often, pALS are treated as though we lack intellect. We are overlooked and misunderstood, causing our social lives to whither. But I have warmth, laughter, stories and advice to share, and in turn, receive. I refuse to live cut off from all of that. I deserve better. We all do, so let’s share the truth about who we are.
Members of the ALS community, I ask you to share your story with everyone who stares with this t-shirt I designed. Purchase Here for $25
Buy a shirt to give people in the ALS community a voice and fund a desperately needed cure. All proceeds go to The ALS Association
How to Use the Shirt:
- On the first (shortest) blank line, use a fabric pen to write in who in your life you are advocating for (even if it’s yourself).
- For example, my husband will write “my wife”
- Use a fabric pen to fill in the rest of the lines with abilities ALS has stolen. My husband will write “danced ballet, spoke three languages, taught 5th grade.”
His shirt will read: “Before ALS, my wife danced ballet, spoke three languages, taught 5th grade. #DefeatALS/www.alsa.org”
I hope to see masses of us wear this shirt with pride. We can even slide it over the backs of our wheelchairs. Either way, spread the truth and give them something real to talk about!
How I Live Now: Life With ALS 
Rachel, I would love to donate a T-shirt to a family member of a ALS patient – how do I do that?
Laurie
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