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.


Search for a Topic
The big five parts of capos

Cerebellar ataxia


Pes cavus

Optic atrophy

Sensorineural hearing loss


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