30 Inconvenient Truths

September is Charcot-Marie-Tooth (CMT) awareness month. If you weren’t aware of it already, it is the disease I live with every day, and have done since I was diagnosed as a toddler. It is a disease of the nerves, affecting the peripheral nerves in particular, causing muscle wasting in the lower limbs and also in my case, my diaphragm and vocal cords. It means that messages from brain to muscle get distracted, much like when you’re on the motorway and get sidetracked people-watching the pimped up chav car and its inhabitants and ohhh now you’ve missed the exit and you’re stuck on the motorway for another ten miles. It’s like that, only the messages aren’t delayed or disobedient so much anymore, they’re just not there in the first place.
It’s pretty annoying to say the least, but it has its perks too, I guess. (Just give me a while to locate them). But first, let me explain the many annoyances of having CMT…

1. No one in the general public knows what the hell CMT is. It has nothing to do with teeth.
2. Explaining the complex genetic traits of my particular disease is never easy, especially when the question “will your children get what you’ve got?” is fired at you in a noisy room which leads me on to…
3… the shoddy attempt at vocal projection and voice that no one can hear? It comes in really handy, never.
4. The other night it took me no less than 6 minutes (SIX!) to plug my phone charger in. Now you’ve read that, I want you to grab your charging cable and just fondle it teasingly for a few minutes, every now and then making contact with the charger hole in your phone, but only within the final 10 seconds can you click it into place. Let me know how frustrated you are with that little role play.
5. There is never sufficient space in the ‘describe your disability briefly’ box. Briefly, ha!
6. At age 25, the gift of Optic Neuropathy wasn’t gratefully received.
7. CMT affects the peripheral nerves, not the central nervous system. The optic nerve is part of the central nervous system I realised last week. Awkwaaard. Hmm. Off to the neurologist I go, so they can look at me with that familiar puzzled expression. Which reminds me…
8. Any ailment gets put down to CMT. Aww, poor little CMT always getting the blamed. Wait – I’m not sorry at all. It deserves it.
9. Explaining to other mums at the gymnastics centre I take my daughter to that I used to do gymnastics. Just leaving them to try and wonder… “How on Earth did she..?”
10. Trying to manhandle a squirming angry baby when I can’t even manhandle my own hair into a ponytail.
11. Being approached by bearded-weirdos in town, in the supermarket, in the bar and having to nod politely at being informed that they know exactly what it’s like to be disabled because they once lost a WHOLE toenail tripping over the doormat. It was a big toe though, so fair enough. I can appreciate the empathetic comparison.
12. Running out of clever responses to fellow school kids’ impressions of me walking around the playground wearing my splints and clumpy shoes. Imitation is not the biggest form of flattery.
13. No matter how content you appear whilst describing your disability, people want to pity you – ‘oh, you weren’t paralysed in a car accident? It’s an inherited disease? You poor thing’ *sad face, pat on the head*.
14. Being told you are too stubborn, for wanting to do things yourself as a teenager in school.
15. Being told what I am able to do by someone else. It’s funny though, I could’ve sworn I knew my own arms and legs better than anyone else but whatever.
16. Trying to convince doorstep Jehova’s Witnesses that in fact no, God will not cure me. Despite their promises.
17. Candyfloss has a greater chance of curing me. After all, it is real. Just bloody inconvenient that you need to attend a fairground to find any.
18. Never wanting to independently put my phone on charge ever again. I shall stubbornly refuse.
19. Subtly suggesting that GPs research CMT a little after I’ve joined the surgery. At least read that Howard Henry Tooth and his silly surname have a lot to answer for.
20. Being able to wear children’s shoes has its advantages in terms of VAT, but not when you’re 15 and looking for shoes to go with a bridesmaid’s dress that aren’t pink and purple with flashing soles.
21. Having to convince everyone at your mum’s wedding that you intended all along to go for the natural barefoot look.
22. Deciding to choke on ABSOLUTELY NOTHING in a room full of colleagues and pretending you aren’t dying.
23. Rocking the purple leg look throughout the summer months as well as the rest of the year. Circulation, whenever you’re ready. Anytime. Honestly.
24. Having to convince people in a call-centre that I am not ill or in fact ‘feeling rough’. This is just how I sound. Or if you must believe that I am dreadfully sick with the flu, at least pity me and give me free stuff.
25. Getting fed up of explaining to phlebotomists that they need to take blood from my hand, trying to get it out of my arm is like getting blood out of a..
Disabled person’s arm?
26. Teaching a three-year old how to draw mummy’s wheelchair. How the hell do you draw a wheelchair?! I sit in one all day and yet I have no idea how.
27. Trying to teach the three-year old why mummy can’t walk.
28. Spending too long wondering how CMT will play a part in our lives as our kids grow up. How will they understand it, how will they explain it?
29. Trying to think of funny things to say about Charcot-Marie-Tooth disease and wishing I didn’t know what it was either, but then inconveniently…
30. I probablywouldn’t be the same kind of person I am today, had it not been for this thing.

So here’s to CMT Awareness Month.
To years of research.
To the millions of people worldwide living with Disease Of The Floppy Hands and not being able to plug their own phone charger in.
And hopefully, to years more research into genetics, treatments, cures and eradication of many more inconvenient diseases.


Stupid unreliable hands.