I’m stacking for a cause today as it’s International Day of Disabled Persons.
I live with a rare degenerative neurological illness myself, closest cousin is multiple sclerosis, but it is a genetic version. It’s called HNPP, which stands for Hereditary Neuropathy with Liability to Pressure Palsies. Similar to MS, my nerves are breaking down, and so the signals from my brain are slowing and eventually will stop working altogether.
As a result my arms and legs don’t move like before, my autonomic ie. my swallowing and gut can be affected hence I can’t eat a lot of normal foods anymore and have to eat every four hours. As it’s remitting and relapsing I have good days too. However, I can have seizures and paralysis and I’m on a million different meds just to stop the pain, fatigue, tremors, inflammation etc. on a daily basis. I need a walking stick to move, a wheelchair sometimes, and my arms need wrist splints.
I lost all feeling and use in my arms overnight at a yoga retreat in 2017, and they haven’t been back since! But as it’s genetic, turned out three of us in my family has it with varying degrees!
Hence, I’m raising awareness! And these great books talk about some of these subjects:
Books pictured above:
📚 Coping with Peripheral Neuropathy by Dr. Scott Berman
📚 Numb Toes and Other Woes by John A. Senneff
📚 What if your World Suddenly Shifted an Inch to the Left? By Christian Donlan
And for those who want to read more mainstream books by disabled authors:
Check out the video here:
Here are the fabulous books featured in the video:
📚 The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me – Keah Brown
📚 What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt – Tessa Miller
📚 Disability Visibility: First-Person Stories from the Twenty-First Century – Alice Wong
📚 Sick: A Memoir – Porochista Khakpour
📚 Care Work: Dreaming Disability Justice – Leah Lakshmi Piepzna-Samarasinha
📚The Collected Schizophrenias: Essays – Esmé Weijun Wang
📚 Beauty is a Verb: The New Poetry of Disability – Jennifer Bartlett, Sheila Black, Michael Northen
Check out episode 45 on intersectionality when I spoke to the author Porochista Khakpour, who wrote Sick: A Memoir.
The song in the video is by Mark Goffeney with “We Are The Same”: Known as “Big Toe” because he plays the guitar with his feet. This song clearly states, “We are more the same than you may think, You and me we are the same…”
Which books have you read?