Writings about Ataxia, being DeafBlind, family life. The best life can offer!


Five-star disability

Hey readers!

Why do I call this blog, and my mailchimp, Five-Star Disability.

Well, I have five different disabilities: Cerebellar ataxia – Areflexia – Pes cavus – Optic atrophy – Sensorineural hearing loss.

These issues are a part of me, I cannot be without them! Don’t look for a remedy for me, I’m set in my ways. I do lead a positive life.

Both my hearing and vision losses are progressive.

About a decade ago, I could distinguish where a voice was coming from; or a sound. Now I can’t. Even 2 years ago, an electric shaver made noise on both sides of my head while I shaved. Now, there is a tiny buzz like a lost bee on the left side of my head; when I shave the right side the buzzing is louder, like three bees having a fight with a wasp. The wasp wins! These sounds are only evident when the shaver is less than an inch my ear, either hovering or pruning. If I move the shaver to the back of my head, I hear nothing, if I move it to the front, zippo.

And same with my vision: before, I could see pretty good, i could read my own writing. Now, I can’t make heads or tails of any writing, even mine! I need to use a digital magnifier to read my writing that I wrote 3 months ago! I also have more double vision and other fun stuff.

So, with five disabilities, and my innate positivity, I wanted to construe a powerful, positive and proactive name for my blog. And, if you want an amazing night in a fancy hotel, you’d probably want a five-star hotel, right! To hell that you can’t afford the full night, heck I couldn’t even afford to walk out with the bathrobe!

So, putting two together, I came up with Five-Star Disability!

Which is positive, yet adds a touch of mystery and a dash of opulence, while overcoming the Disability!

BTW, if you have CAPOS, or know of someone who has a friend whose brother in law’s cousin has CAPOS, please share this blog with them! It’s my goal to find as many people with CAPOS as I can find!

Be well!

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About the author

Craig MacLean is DeafBlind with ataxia, a rare condition called CAPOS. He & his wife of 22 years have two sons, the oldest of which has CAPOS as well.

Craig uses American Sign Language to communicate. He is an avid writer, friend, Hot Wheel collector and intervenor advocate.

Craig sits on many committees, boards and associations as a DeafBlind rep. He graduated university with a BA in psychology in 2000.