Making a Sharp Right Turn

I can’t believe it’s only five days since “D-Day,” or “Diagnosis Day.” It seems a century since Dave and I sat in an office in Kent Town, and the neurologist said the magic words. You’d have to call them “black magic” words. Nothing light, positive or good trips off the tongue when you say “motor neuron disease.” So, a hundred years on from that afternoon, where are we?

I’m calling this chapter “Making a Sharp Right Turn.” Dave and I (and my brother, Mike, who lives with us and has worked in partnership with me as a writer, editor, and artist since Noah launched the Ark) thought we knew where we were going. The future was planned. We knew in detail where we’d be in 2035, when Dave would retire. It’d be “Hey, for the open road” as we took off in a luxury motorhome to tour this country, see and do everything for as long as we could, then settle down at last, and watch the sun set.

Plans got changed. You could say, that’s what plans are for. You make them, you break them, every day. But life plans are not supposed to be for breaking ― at least, not so easily. In one minute, the doctor literally blew up the world. Not the planet, but our world.

One minute, you’re so sure of where you’re going, you’re cruising at highway speeds toward a future that’s planned and anticipated with the warm fuzzies. The next ―

Slam on the brakes. Come to a screeching halt. Nope, you missed the turnoff. Reverse, back up and turn right, a full ninety degrees. You’re headed somewhere very different, and not even sure what or where the destination is.

So much is uncertain; almost everything is in flux. Tomorrow, Dave has the MRI that will add to confirmation of the diagnosis of so-called “bulbar onset motor neuron disease.” There’s an outside chance that the scan, and a second round of tests, might ― and I say might ― downgrade the diagnosis to Myasthenia Gravis or Kennedy’s Disease. Neither of those is good, but I’ll take them over bulbar-rubbish-MND.

Why? Because both those others offer more time. Obviously, part of that is because Dave and I thought we had decades ahead of us, all the time in the world, and I still want that. (What do I feel? Cheated. Robbed. Short-changed. Let down by Mother Nature.) But there’s another facet to the time we’d be given back by a downgraded diagnosis.

We’ve done a mass of reading. The research into MND is going rapidly. There’s also evidence to suggest that Covid 19 triggers MND in certain people. You didn’t want to hear that, did you? Because everybody in the world has had Covid. Yes, you too. And anyone who’s had it could be among the winners of this booby-prize lottery. Covid has affected billions, and if the evidence is correct, there’s about to be a plague of MND. Dave is far from alone. Likely as a result of this, the cash-taps are turned on at last at research level. From University of Sydney to Sheffield University in the UK, to the big neuroscience labs in India, work is racing ahead.

We need time, and Dave will be there when the new therapies arrive. Even if the diagnosis goes against us (yes, we’ve faced the greater probability that it will), we’re going to fight. It’s not just about keeping his swallowing stable, using Kriya to improve his breathing, and learning to sign for the day when his speech is so slurred that his voice is mostly for conveying emotional content. Those, we’re already doing: progress is being made. No, it’s also about keeping a strong heart and lungs, and a robust constitution.

Waaay down the track (and please gods, let it be years and years), his biggest risk will be aspiration pneumonia. This is how Mom passed ― albeit at 87, too frail to stand, and utterly worn out. Even so, it was the fourth bout of pneumonia that took her. She beat the first three. Get hold of that. Dave is 59, still an athlete, with the athlete’s mindset. If “it” can be done to keep his whole body strong, keep his weight up as a hedge against the dark time, it’s being done, or soon will be. Mike and I are sure we see the early signs of improvement. This morning, Dave and I took a walk at the local wetlands ― he had to slow up and wait for me. I have my own “issues,” and don’t move at his speed.

For me, the challenges are huge. I must relearn to cook. Rearrange half the house. Drop my writing career and click back into “caregiver mode,” where I functioned for many years, with Mom. I’m doing this, but I’m still at the “screeching brakes” stage of this sharp right turn. But those brakes are slammed on, and I know where the side road is. Now, if I only knew where it went.