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


Musings of a guy with a five-star disability…

Hi readers!  I hope you are well!

It has been a while since I added to my blog.

This should be a shortish entry, but it could be longer.

I have five disabilities, those who know me, and for those who don’t, I have Cerebullar Ataxia (body coordination), areflexia (no reflexes), Pes Cavus (High Arch — this is the biggest one), Optic Atrophy and sensorneural hearing loss.  Five-star!

My musings are about different things in connection…

– walking, I “stagger” a lot, and look “drunk”, my knees hurt, and my feet burn.  different situations give me cause to be more cautious, walking on a sidewalk with ramps for cars or crosswalks would make me teeter towards traffic, an interesting alliteration!

– With the pes cavus, I am not flat-footed, which, with the knee pain, feet burning, drunken walk, I am surprised I have not had a serious fall.  I have come close, but something always pops up for me to grab!

– Another funny thing, I would sometimes, for no better word for it, crumple.  I would stand, and feel fine, then I would feel “nothing is holding me up”, and start to crumble.  But that sensation lasts about a second or less, and it stops.

– Sitting down seems to be the best case, but when I do stand up, I either plop back down or, again, stagger forward.

– I have bumped my head a lot, and bumped a lot of things, because I cannot see how close it is, or how far it is, my head is, smooth, but bumpy!

– I haven’t even started to talk about emotipns!  Some days, I feel great and want to save the world, other days I feel sad or upset.  This is partly because I am not working and have no job, the constant theme running through my head at these times is “How am I supposed to support my family?”  Luckily, God is a big part of my life, and He provides, God is Good!

In November I got a walker (or a Rollator, which is the manufacture name) and used it a lot.  White Lightning was what I called it.  Yet, in mid-January it broke and I had four guys come fix it, got a part ordered and installed.  It is still broken!  But, when I had it, I noticed that I was still wobbly when walking, still teetering off ramps, and I even fell because I didn’t judge the depth of a pothole correctly!  Ker-splat!

That being said, I have decided to get a motorized wheelchair!  Or even a regular one, I am quite adept in maneuvering this contraption!

This is a big step and I feel its the right thing, God willing, I will walk straight!

Stay tuned as I have the final CAPOS part to explore, Sensoryneural hearing loss.

Peace!

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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.