I would infinitely rather live with MND – than die with MND
I fully understand why some people with a severe disability try to fight it, attempt to deny it, refuse to allow it to dominate their lives, only ever react to it (and then, under duress). I do not have the luxury of being one of those people. Nor do I want to be.
On the contrary, I not only totally accept my progressive disability – I intend to embrace it.
It’s all a question of strategy…
It seems to me that having MND rather than, say, a severe riding accident or stroke or being blown up by an IED, is both a blessing and a curse. My symptoms come on slowly. If I’m clever enough, I can prepare both mentally and practically. I can stay ahead of the curve. I will never suffer the awful shock of suddenly losing mobility.
I suspect, therefore, that it’s far easier for me because I’m able to gradually come to terms with not being able to walk (although I used to adore exploring the uneven terrain of Dartmoor or far-flung ancient monuments). In reality, I only notice my deterioration by comparing fortnight to fortnight.
Of course, the downside to MND compared with sudden tetraplegia is that I won’t stop deteriorating until all voluntary muscles have failed other than (if I’m lucky) my eyes. My brain, in contrast, will remain steadfastly aware as everything else shuts down.
That is the inexorable inevitability that I have to embrace – if I am to counter it sufficiently to keep living, let alone living well – that others, quite rightly, do not. I need to be aggressively proactive if I am to survive, let alone THRIVE as I want to.
If I go into denial about the ever-rising hurdles, if I leave things a little late, then I potentially also lose options to maximise my quality of life. With later-stage MND, I can all-too-easily lose the option simply of carrying on living.
So, here’s my plan.
Before I can no longer get out of bed without a hoist and carer I’ll have a supra-pubic catheterisation; despite being told I’ll be the first man in my region to do so. Before I suffer the humiliation of being toileted by carers or having to wear an incontinence pad all day, I’ll have a colostomy so I can maintain my independence and my dignity; despite being told that I am the first person with MND in my region even to ask about this.
There’s a lot more I intend to be ahead of the curve on.
Before I lose all control of my arms, I’ll have experimented with robotic alternatives. Before I’m dependent on carers for trivia such as turning things on and off, altering a thermostat, or changing channels on TV, I’ll tie into a sophisticated Home Automation System so I can do it all myself.
Before I can’t speak clearly, I’ll have trained myself to communicate with perfect annunciation in my own voice (Voice-Banked far in advance) through an electronic synthesiser. Before I dehydrate or become malnourished because I can’t swallow properly, I’ll have a gastrostomy.
Before any risk of getting Locked-In, I’ll be skilful in using a cutting-edge Human-Computer-Interface – hopefully far more advanced than the Eye Trackers currently available. Before I can’t breathe properly and slowly die drowning in my own phlegm, I’ll have a tracheostomy with cough-assist technology.
Before I get chronic bouts of pneumonia, urosepsis, or whatever, I’ll have multichannel bio-sensors implanted supervised by a dedicated AI system to monitor all relevant life-signs.
OK, I totally made that last one up – but you get the general idea.
My point is that maybe there really is, very importantly, a fundamental difference between the best way (the most emotionally effective and healthy way) for people to fight their respective disabilities.
Some will be stronger if they refuse to give into it and deny it any control over themselves. I will be stronger if I embrace every aspect of my MND and, turning a liability into an asset, use my one-way journey as a unique opportunity to come up with far more enlightened forms of clinical care for MND than currently appear to be standard anywhere in the world.
That is what Radical DisABILITY is all about.