No Crisis, No Column? OK, Fine: Everything Takes So Long With MS

This week’s been a relief. I haven’t had to dash to casualty or fallen over in my chair. Nor have I stirred up a ruckus with the health powers that be or bumped into a fellow MSer with an interesting tale.

My knockabout personality undoubtedly has much to do with this. Now that I have to get about in a powered chair, I keep forgetting just how powerful it is. In the early days I even ended up tearing my brand-new shower apart. Also, there’s no wing mirrors, so I’m oblivious to anything behind me. If I can’t see it, it ain’t there. That’s ego for you.

Before you write in, albeit in a drove of one, that I should have some mirrors fitted, I’ve thought of that. But there’s no point, as I’d not only tear them off but do even more damage to the lintels in my house — even if I remembered to fold ’em in. So there.

Everything takes me so damn long — well, not quite everything. Writing doesn’t. Except I can now only type with one hand and one arm. Fortunately for me, they happen to be attached to each other.

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I was only ever a “pecker” — no touch-typing for me. I presume most people are the same these days. Pre-computer ubiquity, few could touch-type. Thankfully, university educations allowed some of us to go off-piste. And yes, that is piste!

Then again, I always contended that this was a happy harmony, as it meant I could type about as fast as I could think. Now, between age and MS (it turns out you do need to cook for me now that I’m 64, and that has nothing to do with me being a bloke), the same is true as I type one-handed.

And forget artificial intelligence verbal typing systems. They won’t be any good until they reach the level of Skynet, and then they’ll start exterminating us anyway. See? You just can’t win.

My trouble is mainly dexterity. It can take me hours to accomplish what the able-bodied can do in minutes, nay, seconds. Putting away my innumerable medical supplies — the drugs, catheters, and various supplements that arrive like I’m a sort of port — is usually a whole afternoon’s work. Yes, I can ask for help, but there has to be some self-reliance, if only for my family’s and my own sanity.

I rely on three sticks, a Swiss Army knife, and a handheld vacuum cleaner as my new tools of the disabled trade.

The tools of my disabled trade. (Photo by John Connor)

Walking stick: This acts as a great floor cleaner if I push a baby wipe around and will reach objects that I’d otherwise have no hope of getting at. There is also the not-small matter of it having the strength to pick up heavy objects, as long as the handle has something to latch on to.

Soft, blue, rubber-coated pincers: This tool can pick up just about anything from the floor. About the only item that confounds this beauty is the humble paper clip, which turns into an infernal creation. There is still a solution.

Handheld vacuum cleaner: My first one died recently, but it proved so useful that I bought another really strong one. It eats those infernal paper clips. And it also cleans my wooden floor.

Black claw rubbish collector: It’s amazing what this can deal with — everything but the smallest item. Drop a pill and the blue claw has to be deployed, but this tool replaces everything else my hand can no longer reach. It’s my favorite.

Swiss Army knife: I’ve had this for years. When it was confiscated at the airport (in my able-bodied days, no less), I paid to have it shipped back to me. That was in the far-off days before I’d adjusted to the new anti-terror paradigm. Now, besides it being an admittedly over-the-top letter opener, it attacks tape-strewn packaging with ease and still allows me to cut my own fingernails. Somehow. The scissor blades haven’t dulled a jot.

I’m not exaggerating about the yawning gap of time these last vestiges of self-sufficiency take. I spilled nearly a whole packet of pads on the floor yesterday and resigned myself to a slow and agonizing retrieval process. I returned to my desk to continue this column. My wife walked in and stowed them away within seconds.

As Kurt Vonnegut would aptly put it, “So it goes.”

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