Diwali and Samhain (Halloween) fell on the same date this year … the Festival of Light and the western Day of the Dead, on the very same night? Bizarre, but there it is. We didn’t celebrate either. I couldn’t find the energy or motivation to celebrate Diwali, and couldn’t see any fun in a celebration of death and decay. So, for this year we left both alone. Best wishes to my friends, kith and kin, no matter which you were celebrating. I’ll see if we can join you next year.
It’s difficult to find an angle from which to approach today’s post, because I’m divided, looking for middle ground. I want to say, first, that the staff at the MND clinic at Flinders are the absolute best. I’ve never met a group of medical specialists who are so human, pleasant, and welcoming. Doctors can be officious, arrogant, deaf, dismissive, impatient, even irresponsible, but the team at the MND clinic are some of the nicest human beings it’s ever been my privilege and pleasure to meet.
We got through “Hell Day” ― three specialists in one day, with some tests that were physically exhausting to perform, and also to watch. Knock on wood, Dave’s numbers are better than expected … the life legacy of having been an athlete. His lung capacity is still better than that of an average man, especially of his age. We’re also managing to get his weight to tick up, infinitesimally slowly. A neat trick in the face of hypermetabolism, which is a knock-on effect of this beast of a disease. I’m filled with ideas for ways to pile calories as well as the nutrition into his food ― also filled with questions for the GP, whom we'll be seeing very soon. (Why in the world can’t hyperthyroidism in MDN patients be treated the way this metabolic disorder would be treated in other patients? Doctor, darling, do you really mean that in 2024 we still don’t know what causes it? Can you grasp how this process of “we still don’t know” is obliterating my faith in science?!)
Dave’s lung function numbers are more than good enough to qualify him for the one and only drug that’s been approved here. And we checked its price, and it’s affordable. His specialist is out of state till the end of the week (tomorrow?), then we should get a call to collect a prescription. Over the first hurdle, and thanks to Xiao for making the tests as doable as possible. (Relative term there, but still.) Next?
We spoke at length with the nutritionist, and got an A1 rating from Amy. We’re doing it right so far; we shall continue to do it right, and I hope to be able to get Dave’s weight to tick up significantly. This bears directly on “length of survival” …
And here is where I run into the brick wall, hit that division, the dichotomy in my thinking. Since western medicine has nothing much to offer for this particular autoimmune monster, we looked elsewhere, and found quite a lot. There’s research that will take a decade to be verified to the satisfaction of scientists (the vast majority of whom aren’t sufferers, nor do they have someone at home waiting for a cure, so there’s no sense of urgency. The work is performed at glacial pace, while funding has, till recently, trickled like a leaky faucet). So, we optioned a lot of research that’s so new, or so out-of-box, you won’t hear any of this from your specialists. Not a syllable.
But we’re doing it, and because we’re doing it, we have hope. No, I am NOT in denial. Denial is the blind alley where you run and hide because you can’t face the truth. Hope is where you read, take knowledge from brilliant researchers, grab whatever you can find, and MacGyver your own solution from bubble-gum, paperclips and duct tape.
Hope gives you a reason to get up in the morning. It provides a reason to plan for next year, and look forward to possibilities instead of starting (prematurely!) to wallow in memories. The time for that may well come; the odds are against us. I admit it. It’s probably a one in a million chance that we’ll win ― but those odds come up every day. The odds of winning the lottery are longer, but someone wins lotto every - single - day.
Yet, when you consult with your medical team, it’s there in their (kind, compassionate) faces: the belief, knowledge, certainty, that you have no hope, there is only one way this story ends, and the path is not long. They probably believe they’re doing the right thing, preparing everyone involved for the inevitable appointment with the funeral director. It’s not their fault: it’s in the western mindset, the education, our materialist protocols. First, in everyday life, we hide death away like it doesn’t exist, then we (kindly) consign people to it when it suits us. Huh.
It takes a strength I didn’t know I had to let this compassionate, well-meaning nihilism bounce off me, roll off like water off a duck … go home, get my sleeves rolled up. Because nobody outside of the medical world has given up on Dave ― not yet. Not while there’s something to work with, and solutions to at least be tried along the way.
So, as Diwali/Samhain/Halloween passes by for 2024, unmarked by our house … good wishes to all for a brighter 2025, and a bright future for the world.
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