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What does it mean to consider yourself disabled?
Many of us can say both yes and no, feeling both as true and false.
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The Healthy Creative Balance: Between Unreason and Overthinking
“It seems that the key to creative cognition is opening up the floodgates and letting in as much information as possible.”
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Crip Time
What would a calendar look like that prioritized and protected caregiving? What about one that understood … different types of relationships and the soft but consistent focus they demand? That understood creativity, and children, or grief? What would a family calendar look like that made its primary steward and their needs as visible as others?
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Conference Videos Worth Watching
The 2022 CMT Patient and Research Summit has all its session recordings online now. These are mostly research-oriented, but not all. It’s good to see a few sessions on therapy and things you can do for yourself, in addition to the research focused on specific CMT subtypes. Of note: CMT is a Multi-System Disease by…
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CMTA Toronto Upcoming Events • CMT Awareness Month • Learning to slow down and attend to your needs • Existential anxiety
The Toronto chapter of the CMTA has regular meetings and events that can be joined remotely with Zoom. On Saturday, September 24 from 1-3pm EST their guest speaker will be Shannon Hardy, owner of Academy Foot Clinic and a trained podiatrist. Shannon will be speaking about foot care and the importance of seeing a chiropodist/podiatrist.…
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Asking for the ADA Suite
The hotel receptionist said there was a generator running near my room. In fact there was a giant truck with a generator and air conditioning system running 24/7 right outside the ADA room’s door to cool the whole building I’d be in. He said go check it out a few minutes and come back if…
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How long can you afford to hide it?
It’s too much trouble and humiliation to explain and ask for a little help or tolerance when hiding a disability and lumping it is how you’ve learned to cope best. That’s not a good psychological place to be in, long-term, and I can see how it’s not going to serve well post-40s.
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Lord Grizzly
Here is one of the CMT-related poems I’ve written. There aren’t many. This was the first and is surely the longest. It’s in the long-line style of James Schuyler, who offered a really fun, liberating model a few 30/30s ago. The title nods to Frederick Manfred (AKA Feike Feikema) who wrote a historical-fictional account of…
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Disease, Depression, and Family Denial
CMT and other hideable/hidden diseases may often be denied by the people closest to you — a potentially devastating, psychologically defeating, and depressing, gaslit reality that is toxic and abusive.
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Walk4CMT is coming up on September 18!
I will be walking as far as I comfortably can in Muscular Dystrophy Canada’s Virtual Walk4CMT on Saturday, September 18 — which is somewhere north of 20km at which point the numbness setting it around 10km usually gets into a little more active pain, thanks of course to the effects of a relatively mild case…
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BILLYs
Thick sole, wide toe box, big ankle support, and the upper unzips to fold open for easy access and orthotic insertion. What’s not to like about BILLYs?
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The “first treatable” form of CMT?
I wrote this brief article on the way the SORD gene works (or fails to work) for the Hereditary Neuropathy Foundation. SORD mutations cause “the most common autosomal recessive form of CMT2 (CMT2A1), autosomal recessive intermediate CMT (CMTRIA), and the overlapping category of distal hereditary motor neuropathy (dHMN).”
CMT Blog
Living and Learning with Charcot Marie Tooth Disease.