Merrie Yuletide, 2024

To friends and family ... Merrie Yuletide in the north and Beltane in the south, as we all celebrate the turning of the year. In Australia, it's the Solstice of Summer but -- as always -- my heart is in the north. 

A Bee in My Christmas Bonnet

The season is almost upon us as I write this, and if I had one wish, it’s that we could both forget the words “motor neurone disease” utterly, completely, for a day. Or even an hour. It’s like being told, “Whatever you do, do not think about a blue horse. Remember: do NOT think about a blue horse!” Naturally, the only thing in your mind is now a blue horse … that’s the way the human brain works.

So, since forgetting about it will be impossible, how about we tackle it head-on, wrestle it down, and throttle it? (The MND, not the blue horse or the brain.) The other day, I had an epiphany. One of those “lightning out of a blue sky” moments where you wonder which guardian angel whispered into your ear. And I listened.

One of the major (and most common) symptoms of MND is hypermetabolism: the body is burning through calories so fast that the patient can barely keep his (or her) weight steady. In fact, many patients literally starve to death, and a lack of body weight is a complication if/when the lungs are dealt a blow like pneumonia…

But why is the body burning through so much fuel? 

The old idea was that this was just another symptom of the body malfunctioning. The newer theory (yes, I read it online) is that the body knows something is wrong, and it’s burning through fuel so fast because it’s trying to cope.

The radar turned on. The body knows there’s something wrong? It’s trying to cope? Okay, let’s run with that. Let’s accept the fact that the body can’t fix what’s wrong (at this moment, nobody can … though acupuncture can take a pretty good crack at it), but it might ― and I say might ― be able to stay two jumps ahead of what’s wrong, and remain functional, perhaps for a loooong time ―

At a cost. There’s a high price to be paid for the body’s desperate attempt to stay ahead of MND: it blazes through fuel. The patient is tired, thin, and getting thinner ― yes, partly from muscle wastage, but also from the loss of fat stores, where that hypermetabolism has just burned them up.

So … the body is working that hard? Hmm, says I. Burning through that much fuel, it’s working like an Olympic athlete. So, how about if it were given the respect an athlete deserves? How about if it were fed in a way commensurate with its effort? Lots of food. The best food. Top nutrition. And sports nutrition. And keep it coming, to facilitate the effort this body is making to do … what?

I have no idea what it’s trying to do, but it’s certainly doing something. You don’t eat 3,000 calories per day and watch them vanish without trace, for no resulting weight gain, without the body doing … well, something. It’s not running races or power lifting. It’s not creating massive heat. But I do remember that when Dave took that fall off the mountain bike and broke eleven bones, then also, he absolutely burned through fuel as the body healed itself. He couldn’t eat enough to keep up.

I have zero idea what the body is trying to do now, but rather than moan about it, I’m going to make an assumption that might be waaay out in left field. It knows. It’s smart enough to know something is wrong, and it’s trying do something about it. So … don’t moan and groan ― help. Feed it like an Olympian, keep the sport nutrition coming. Then, wait and watch. See what happens. (To my knowledge, MND sufferers are never fed like Olympians. This. Does. Not. Happen. So, again, we’re bushwhacking, breaking trail into unknown territory. Experimenting.)

This is the current experiment. I have nothing to report at this time: it’s too soon to know anything, but rest assured, if something comes out of this, I’ll write about it. At the moment, we’re cruising. I’m pleased to report that both the NDIS and life insurance claims were eventually processed, finalized … we’re over those hurdles. The last hurdle is Centrelink ― the Disability Support Pension. That’ll take as long as it takes, and we won’t be able to jiggle any hooks till about the middle of March. Patience, Grasshopper.

So … Christmas. I’m experimenting with Christmas meals that can be pureed and reassembled to produce all the flavours, if not the textures, of traditional dishes. Dave is settled into the routine, and the acupuncture makes a bigger difference than I’d hoped. It seems to be working, knock on wood.

Me? Hanging in here. Keeping busy; back at work (editing, not writing). Starting to think about messing about with images again, for the first time since the end of September, when … well, when the world blew up. Ten weeks feels more like ten years. But the human heart and mind can come to terms with almost anything, and I guess I’m learning to cope. So long as I can hang on to hope, I’ll get through … and with the littlest smidgeon of luck, Dave will be there with me, a long, long time from now.

Don’t Look Back ― You’re Not Going That Way

Don’t Look Back ― You’re Not Going That Way. That’s a Viking proverb, and I would have to say, they “nailed it” right there. One of the first chaplets I posted, quite a while ago, was entitled “Making a Sharp Right Turn,” in reference to the fact that every direction Dave, Mike and I thought we had mapped as our route into the future just changed. We were headed for a semi-prosperous retirement where we were both adventurous and cozy, and it was going to be grand.

Now, Dave has cut back to two shifts per week, and as of this moment, we’re starting to rejig the budget for ― well, everything. A few months ago, we thought there would be funding for whatever we wanted to do. Now? Need to think about the shopping list. Good, innit? This is the first taste of “the oncoming storm” that will actually break like a rainy day that doesn’t know when to quit. We’re won’t be destitute (at least, I don’t think so…), but we must be careful.

The old Mitsubishi Magna that’s getting daggy due to sun damage was due to be replaced soon with a new EV. Well, good old “Lola,” the Magna, will have to go for as long as she’ll go. If she looks shabby, just stop and listen to the snarl of what’s under the hood. She’s the proverbial bat out of hell. She just doesn’t look like it. (Who does?) Sigh.

So we’re trying to look forward, more than the two paltry years the specialists offered. We’re looking way beyond that, and we’re 99% sure we have good reason to. Many people asked to be kept posted about how the acupuncture went ―

And the good news there is that it went sublimely well. It WORKED. Dave walked out of there with more strength in his neck and upper body, a clearer voice, and higher energy levels. And all this lasted at 100% for several days, until a hard ride up a steep hill blew off the whipped cream. His hill ride yesterday left his voice more muffled, though ― to be fair ― today he still feels fantastic, his own word … and the second acupuncture session is tomorrow.

So yes, we’re more confident to look forward, trying to devise plans that take into account the MND, a tighter budget, and the somewhat foreshortened timeframe we might (I say might) have to work to. It’ll take some planning. Many things Dave and I used to love to do together either have stopped or will. Sigh. Again. So…

Find new things. I’m not sure what they’ll be, but I’m certain we’ll find them. In point of fact, we need to START LIVING AGAIN. We’ve both had enough of being a yoyo on a string, bounced around by four specialists, a charity, and the bloody NDIS. (It feels like they own my life, and I’d be shocked if Dave felt differently.) It’s time to draw the line and say, “Enough!! Get out of my face, let me get on with the business of living!!”

And speaking of the NDIS, we’ve come to understand why people utterly despise this National Disability Insurance Scheme. It’s the only safety net you have left these days, and government first funded it, then left it to administrate itself. Smart move. Like that was going to work! End result: you have a hodgepodge, baroque system that doesn’t handshake properly with anything or anyone else … which you discover on the day you apply for their future support (against a time you’ll want a customized electric wheelchair costing as much as a new car. Ye gods).

You send /show them your driver’s license, the lease to your home, and your Permanent Resident Visa, as awarded by government. These are your ID documents, showing who you are, where you live, your right to be here. Every single document is rejected. They’re inarticulate as to why a Driver’s License is no good, but … there you are. They can’t read the scribbled signature on the lease ― no matter that it was issued on a formal company masthead. Your Visa pre-dates the current system, so it doesn’t carry a lot of numbers. It’s a letter from Immigration, welcoming you to the permanent community, while the visa itself is electronic, attached to your passport, good enough for government, police, Immigration, Taxation, Centrelink … but not the NDIS.

At this point, I’ve no clue what they want, therefore I’ve no idea what help, if any, there will ever be for us in future. It’s actually conceivable that we’re on our own, though one doesn’t like to dwell on that. It’s a bridge to cross when we get there, if we ever do. (Take a pill, Jen … chill. It’ll work out in the long run. Maybe. One hopes.)

So ― don’t look back at the things we used to share, plan, and dream. Look forward and find new things to share, plan, dream. We’re not going back, because we can’t. We’re going forward because we have zero choice about the flight of “time’s arrow.” Every one of us is going forward whether we want to or not. So, we might as well look for the best way to get to wherever we’re going. Let the acupuncture do its thing. Buy time. And over the course of many years, we’ll eventually have worked out where we went to get where we are ― if that isn’t too Irish for you.

Who Knew There Were So Many Shades of Blue?

 

24 November, 20204

I wrote some time ago that “hope is like the ocean.” It ebbs and flows according to way it’s driven, and when the tide goes out … boom. Mood crashes. Energy crashes. The mind dives into a zone where no one wants to be, and takes the body with it. In that place, all one wants to do is escape, but somehow, the traveler has lost the path, those tall gates are all locked, and who knows where the keys were hidden?

If I were talking about myself, it would be bad enough, but I’m not. After all we’ve been through, yesterday was the first time I’ve seen Dave spin into a place with which I’m all too familiar. And frankly, I have a bone to pick with “the system,” both medical and social services.

These last days have been ghastly: a blizzard of paperwork to be completed for the insurance company and also for Centrelink. There’s no way around this, if you need Disability, and if you want to claim the insurance settlement that will, frankly, save your life in the coming years. But I must wonder if insurance companies and government realize (or care) about the psychological beating all this deals to the victim of MND, and the family.

You come out of the process exhausted, depressed, strung out. Driven to the end of your rope and then whipped to go further, further, when you can’t. You have nothing more to give, but they keep demanding. Energy levels plummet. Mood zooms down and down. Suddenly, one is utterly convinced that it’s all over; the only thing left is to choose and box and dig the hole. Hope has fled.

Cruelty wears many faces, and some are disguised as help. There’s no doubt that doctors would regard the dark dimension as “Coming to grips with reality,” because in their knowledge, MND is a death sentence and that’s the end of it. I don’t dispute that. Rather, the questions I’m asking are these: “How *long* does the patient have? How do doctors and social services imagine horrible emotional experiences affect the brain and its ability to maintain or even heal itself? How much time, in days, weeks, months, does each of these awful experiences subtract from the patient’s remaining life?”

Because as I’ve said elsewhere, thoughts make molecules. Molecules make things. Motor neurons are things. Fact: the brain can manufacture its own opioids. True. Also fact: the brain can produce such toxic chemistry, we make ourselves sick. Trust me: I’m a master in this art after decades of practice.

The brain is a strange place that can destroy itself with chemistry gone haywire. But I have to wonder … if chemistry can (and does) turn to chaos, what happens when one decides to draw a line in the sand and say, “Enough!” No more chaos. No more dark dimension. Even plants are smart enough to turn to the light. Why can’t humans do such a simple thing?

Light, hope, rising energy levels, better mood ― all this affects brain chemistry. If fact, all of this actually *is* brain chemistry. And of course, at the root of MND is the “chemistry gone wrong” factor: a broken chemical pathway that began with adenosine and ended with inosine. In healthy people, the pathway is unbroken. In Dave’s brain, a couple of steps are missing with the end result that motor neurons perish.

I suppose what I’m wondering is this: if you take a brain where the chemistry has already gone wrong, then you harass it into the darkness, what does this do to life expectancy? I’d be shocked if there were any data, and it’d cost five million and take a decade to do a study. But I’m prepared to bet the agonized bedlam of emotional turmoil does real, physical damage that translates into time stolen from the patient.

Less than 24 hours after all this (we spent the morning at Centrelink … it was as dreadful as I’d expected), Dave is still “down.” The usual Kriya, Qigong and nutrition only lifted him 30% out of the doldrums. He should be feeling great now, but he’s not. Not even halfway. And I’m furious that the system has the right to do this to a man who’s already wrestling with the worst diagnosis in the world.

Not good enough. Time to make good molecules ― help the brain to help itself. It has the capacity to do this, if it’s allowed to, which is why we get good days and bad days. The body is the mind’s most loyal servant. It goes where the mind tells it to go. Tell the body to dive into hell, and it will. Now, what about if the mind tells the body to climb back into the light? How far can it climb? How long can it stay, basking in the light?

And to this end, Dave’s first acupuncture session is two hours away. In closing, let me add my profound thanks to Mike for supporting us through this. Honestly, we wouldn’t be holding it together if it weren’t for you!