The First Battle in a Long War

23rd October, 2024

You don’t win a war in a day or a week. A war is made up of dozens, perhaps hundreds of individual skirmishes. Acts of heroism, moments of despair, dark nights when you wonder if the sun will ever shine again, wounds that take time to heal. And throughout it all, a course you keep trying to steer while a storm batters you, trying to dump you into a whirlpool that’ll take this metaphorical boat to the bottom.

Yesterday was, I think, the hardest day ― yet ― of my life, and I imagine Dave would say the same. It was a battle, and a battle we lost. Hope endured until the last possible moment before turning to ash. No other diagnosis possible. It’s official: Dave has Bulbar Onset Motor Neuron Disease. The prognosis is (I’m not totally clear about this) either three years from time of diagnosis, or three years from onset of symptoms. His symptoms go back more than a year, so … you run the numbers.

Against this, you have Dave’s innate strength, the athlete’s robust constitution, a will to live, a zest for life … a family that’s fighting with everything we have and know … and I must add, a medical team that’s turning out to be solid gold. The staff at the MND Clinic are beautiful. They’re not merely professional, they’re compassionate, kind, human. I can’t praise them enough.

Yet at the end of the day, all the compassion in the world won’t change the diagnosis, or the prognosis, so hope will have to change direction. Now, it’s not a question of running with a less devastating diagnosis. We’re just playing for time, all the time we can get, by trying to slow the progress of this beast.

The deterioration has been frighteningly fast, but I’m told MND progresses by “steps and stages.” One can stabilize at a certain level before dropping down to the next. If you stabilize for long enough, we’d call it a remission. Do people with MND get remissions? Apparently, it’s not unknown, but it’s rare. And those remissions are usually in the order of three months. A year would be exceptional.

What am I feeling? As if I’m spinning out of control. Fretting, feverish yet cold, hypervigilant yet forgetful … searching the literature for hints about alternative treatments ― long shots but worth a try. And at the same time admitting to myself (and Dave knows this) that I must brace myself. So, what do I feel? Not grief (yet), but ... sorrow. ("Are you flesh or spirit?" the boy asked. She answered, "I am sorrow.")

Can we stretch two years into five? Will the athlete’s strength and determination provide that “extra something” that makes the difference between the person who decided to give up, and the guy who didn’t? Will the extra years be good years? Can I make them happy and fulfilling, make the days worth the effort it takes to live them?

These are hard questions without answers. There’s only one thing I know for sure. So long as Dave has quality of life and is having fun ― we go for it. But (and I’ve told him this) I don’t want him to suffer. If it’s all going to go massively wrong, let it be over with as little suffering and as much peace and love as possible.

Fear is the shadow that walks with me through every day. It takes a combination of Diazepam and beta blockers to make me sleep for five hours. Eating is a chore; food tastes like mud. Fear is my companion. My enemy. It paralyses you. Takes way your ability to reason. Like a lost child, you spin around, waiting for someone to come and rescue you … but this time, no one is coming.

I have three fears. The first is homelessness while Dave is increasingly incapacitated. We’re in a rental, and you can’t depend on a rental to be there for you next year. We have six weeks to sweat through before we’ll know if we have a place to live next year. Sweet, isn’t it? Oh yes, that’s fear, because in this housing crisis, there are no other rentals; nowhere to go. The second is the fear inspired by watching my father fade away with lung and brain cancer. Imagining Dave in his predicament is ― well, beyond what my sanity can tolerate.

The third fear is the most human, and commonplace. Simply the fear of the empty place he’ll leave behind. The long loneliness before my own turn comes. It comes to us all. That Rainbow Bridge is on the horizon, from the day we’re born. We all walk across it; it’s not optional. But I thought it was years and years away … not so close. So soon.

Next Tuesday will be another blizzard of major tests: three in one day. Two were exhausting, yesterday. Tuesday will be a reenactment of Iwo Jima. Is it a battle we can win? Probably not, because these skirmishes aren’t winnable: it’s about drugs that don’t quite work, and learning to speak in sign language, for the day his voice is gone altogether, and having a PEG, so he can eat and drink at all. Next Tuesday will be … awful. There’s no other word for it. Yet this is the road ahead. We must walk it. And we’ll walk it together.