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!

We’re in the Wild Wood Now, and it’s Dark

20 November, 2024

I haven’t written in almost a week ― largely because there’s little new to add. The appointments are made … as of today, the paperwork is completed … we’re almost, almost in the phase where we have nothing left to do but wait. And wait.

Dave and I just got back from the GP’s office, and I can’t praise Dr Tim highly enough. He is The Best. In all honesty he’s the only medical practitioner I trust to lay a finger on me. He gave us oceans of time to wade through a stack of documents (about six ordinary appointment slots, when we’d booked two), and he’s doing everything in a GP’s power to make sure Dave is well taken care of. NDIS. Insurance. Centrelink.

It was … well, it was bloody hard work. I held it together until the end, when Dave invited me to suggest what I, myself, needed. Prescriptions ― the usual, same every year. I’d written the list to make sure I didn’t forget one. Bottom of the list, I wrote, “Something for extreme anxiety, profound fear, and sorrow.”

Long story short, he wants to see me ― me ― again. Friday, noon. I guess he noticed how the stuffing has begun to escape through my seams. To be fair, I held it together till the end. And Dave was ― he was Dave. I swear, he’d find something to joke and smile about on the darkest night, in the deepest part of the Wild Wood.

The Wild Wood is a metaphor, as anyone who ever read The Wind in the Willows knows. It’s the realm of your deepest fear made manifest. It’s the struggle to confront that fear, the battle to not let it overwhelm you … the belief that someone will come find you, help you, and there’s a refuge, a safe haven, up ahead, where you can rest and recover before you find a way to go on.

Well, from here on, we’re well and truly in that Wild Wood. We’re in territory that has been well charted, and the path ahead is worn smooth by about a million pairs of feet, all pattering, lemming-like, in the same direction. Naturally they’re playing follow the leader. MND is incurable, so ― why bother trying? “Make me comfortable, hold my hand, help me through the next year. Or two. Before…” Yeah. Right.

Not good enough. I run back to the statistics, medians and averages. 30% of patients are gone in the first year, for whatever reason, which skews the numbers massively. It’s equally true that 10% of patients are still alive in 10 years. Now, what did that 10% do that the others didn’t? Because, sure as the sun rises in the east, they did something.

Well, we’re doing everything. Yes, the one and only MND drug that’s approved by the TGA in this country. But also, nutrition, supplements, Kriya, Qigong, meditation, exercise therapy, and ― beginning in one week ― acupuncture, which is reported to work its own minor marvels. Add all that together, and … what?

Okay. Dave did a full routine with his weights this morning, and went on a bike ride too, in the heat. And at the end of it all, he wasn’t wasted ― in fact, after the medical ordeal, he’s in far better shape than I am. So, am I seeing positive results? Is it too early to tell? Who knows? But I know what I hope.

Only time will tell, and this is where I began: it’s the waiting that gets me. We’re working hard to keep his weight up. Cooking alone is a fulltime job, but he’s enjoying his food. Smoky Taramosalata, and walnut-peach-coconut cream for dessert, for lunch, for instance. You have no idea how many calories I piled into that! And it’ll be a massive bowl of mocha cream for dessert after a large, high-protein dinner. If his weight is stable (it is), and the exercise is maintaining his strength at acceptable levels, and the Kriya is keeping his breathing good … are we cruising?

For how long? Again ― who knows? It’s a waiting game from here on, while we pick our way through the Wild Wood, watching out for eyes in the darkness and listening for the clash of fangs. It’s scary out here.

There’s little to add. Day to day, nothing changes, but when the NDIS paperwork clears, Dave’s old mate Groot will be converted to an ebike ― he’ll be out and romping it again. (Next: a high-top van, something like a Toyota HiAce … and I must learn to drive it safely. Looking ahead, just in case: if Dave needs scooters and wheelchairs in a year or three or five, and if we’re still going to get out and go places, we’ll need a vehicle to carry the hardware. So, we might as well get a jump on this and let me do this well.)

But that’s for the future. For the moment, it’s just two more appointments to scramble through, then … well, I’m going to put up the Christmas tree and see if I can’t organize a nice Christmas for Dave, Mike and myself. Who says you can’t decorate a tree in the Wild Wood?

Spinning in Freefall

14 November, 2024

I’ve been writing to friends behind the scenes, trying to put sense to what I’m thinking and feeling. Wondering how other people cope with this situation. (Thanks to all of you, and especially Anna, who listens to me vent.) The bottom line appears (to my befuddled brain) that I’m actually overwhelmed. The system is overloaded; it can’t process any more. No more info … no more emotion … no more fear … no more requests for paperwork, forms, appointments, tests. The whole morass is juuust reaching a tipping point where, on the other side of a certain line, nothing makes sense anymore.

Let me put it another way. For a quarter of a century, Dave has been my strength, my rock. Now it’s my turn to be the strength, the rock … it feels as if the ground has been snatched out from under my feet, leaving me spinning in freefall … falling, falling … trying to find my wings. When you’re in freefall, you either find your wings and fly free, or you crash. And I can’t afford to crash.

To cap it all, Dave has fallen ill. He has an upper respiratory infection and has spent two days coughing his lungs up. Everyone at work has it, so it’s no surprise. But when you’re trying to keep your head above the rising tide of MND, this is no joke. He won’t throw it off as easily as he once would have. His energy levels may be noticeably lower after this.

What about the next infection? And the one after? A large part of me wants to tell him to walk away from work immediately, get out of the roiling stew of infection that is a residential aged care facility. Residents, care workers, nurses, caterers, visitors ― this is the mass of humanity, and every one of us is a walking biology lab, incubating everything imaginable.

We don’t have the means for him to quit so soon, but we can at least shut back the number of shifts back … lengthen the odds on him catching something else. And then ― he’ll be home, in a little quarantine bubble where he won’t be at risk.

To keep you posted: the application for Disability Support will be lodged on Nov 26, and we understand that no matter how long it takes to process, it will be backdated. So … credit cards to the rescue in the short term, and hope Centrelink processes the claim fast. If it starts going wrong, a lovely lady at MND SA has invited me to keep her posted. Her organization has some highly-placed contacts that can advocate for us. It’s also been suggested that I can approach members of parliament, and the Office of the Public Advocate. If it gets to this stage, I’ll need to have a social worker or case worker appointed to this struggle, because ―

Spinning in freefall. Haven’t found my wings yet. Not even sure if I can and will find them, or if I’m actually going to crash. Thing is, if I do, who’ll pick me up? I wouldn’t allow Dave and Mike to even attempt it … not fair. Mike is the last one to be there for Dave, and Dave has enough on his plate without me making a right, royal mess of this. So ―

No crashing. Crashing is not allowed. Next ―

We’ve managed to get Dave into acupuncture, starting Nov 27,, the earliest available appointment. Great results have been achieved overseas; I read a white paper out of Taipei and my radar turned on. There are no guarantees; reputable practitioners will say only that this therapy *can* slow it down. Like the Riluzole. Like the “magic potion” of nutrients that are recommended by researchers across the world.

Slow it down, buy us time. Let me get my brain back into working order. We’ll be seeing the GP, Tim, in six more days, and … well, I don’t usually hold with drugs, but this time around I’ll be asking for something. Meds, to take the edge off, make it possible for me to get through this. As Clara pointed out, if I were diabetic, I’d take my damned insulin, and there’s nothing wrong with asking for help and taking the meds.

So … Dr Tim first; forms going in ten directions; Disability Support claim lodged on time, acupuncture the day after ― the first of many ongoing sessions. With all this done, we’ll have reached the end of what we can do, must do … then we wait. And wait. For what?

For a 2025 lease, so we have a home next year. And in the midst of this housing crisis ― where firefighters, school teachers, ambulance crews and policemen can’t afford rents on their wages!! ― that’s actually no mean feat. So …

There’s a reason I’m overwhelmed. A bloody good one. Spinning in freefall, trying desperately to find my wings. Valkyrie wings. She’s in here somewhere. She needs to break free, and then we’ll fly. Not crash.

Exhale!

10 November, 2024

Several times, Dave has mentioned that the “worst of times” in the MND process are those “between times.” If this were a movie, you’d watch the scene where he didn’t feel well … jump cut to the GP’s office, where we get a referral to a neurologist … smash cut to the MND Clinic at Flinders, the sledgehammer final diagnosis: no wiggle room left, no doubt about this. You’d segue to teary, philosophical scenes at home, and fade into the marathon session at MND SA (last Friday), before dissolving into the impending scene at Centrelink (tomorrow), where we front up to a counter, petition a total stranger and request assistance … May we please lodge an application for Disability Support?

This script would make a well-edited show, but the truth is very different. Six weeks have passed since we sat in the GP’s office and he said the words, “I’m worried about you, Dave.” It’s been six centuries, and we’re not done yet. Out there, ahead, is a return to the GP’s office ― November 20, Dr Tim’s first available time, for a slog through the NDIS paperwork. Along the way, we talk to the insurance company, and finally, finally, get hold of a paper-printed prescription that will (at last!) allow Dave to start the drug that will hopefully slow this thing down for a year or so. Breathing space.

We actually have the prescription. It was emailed to us as an ePrescription. I phoned the pharmacy a few days ago and they said, “Sure, we can fill an ePrescription; come in and pick it up on Sunday morning.” Sunday rolled around, but a trip to the pharmacy inspired shaking heads. Nope. You’ve got the MND. You’ve got the ePrescription. They’ve got the drug. They won’t give you the drug … because the ’script was emailed to the patient, not to the pharmacy. But how the [bleep] was the specialist supposed to know what pharmacy to email it to? A crystal ball?

This is one of those instances I’d file under “Bureaucracy Gone Bonkers.” The demand for a hardcopy in an era when Australia Post can take 7 – 10 working days to deliver a sheet of paper across town, while the patient’s MND spins on, spins on, and precious time wastes. One despairs.

Take a deep breath. And another. But if you happen to be the patient, remember this: it turns out that the exhaled breath is as important as the inhale, because a major problem for MND patients is the buildup of CO2 due to not being able to exhale properly ― a consequence of atrophied diaphragm muscles. Ah … so. This was a tiny, throwaway bit of info, from the administrative nurse, and we’re grateful to know it. Now, Dave knows which muscle groups to work, to strengthen. (And he has his TriFlow gizmo to measure his progress, left over from the big bike crash where he broke so many ribs.)

Does a sigh count as an exhale? Sigh. We soldier on, but the road is long, hard and … darker than I’d anticipated. It can be very dark indeed. The people at MND SA are beautiful, but again you encounter the nihilism, the fatalism, as if death is a done deal. You must remind yourself a hundred times, you’re in this game playing for time, because more research is going on than ever before, and it’s accelerating. There’s a cure out there … you have to still be here when it arrives. Prognosis is based on medians and averages. So, don’t be Mr. Average. Find ways and means…

Such as looking into Ayurveda’s holistic approach. Surprise: they get results. Adapting the Wahls Protocol for an MND sufferer who doesn’t have a lot of spare blubber to lose. And figuring out the communications problems, before they get much, if any, worse ―

Hailing frequencies open, Captain. We’re taking our first steps into the world of Auslan, the sign language used by deaf and vocally-impaired people. You know what I miss? Dave’s voice. Anybody who’s known him for long knows what I mean. That voice is already gone. But even more, I miss the constant chatter, the rambling babble we used to keep up, that made us laugh and joke. It’s gone, because it’s so bloody hard for him to speak that words must be strictly rationed, struggled with, murmured. Ye gods, I miss the old random banter we kept up for 25 years.

The communications specialist at MND SA recommends a text to voice app, used with a tablet. It’ll work to a point; he won’t be utterly incommunicado. But where’s the casual communication that long-married people take for granted? It usually takes two years to be fluent in Auslan, but we’ll do it way faster, because we want to. Need to.

Sigh … exhale. Kriya. Qigong. Weights to lift. Drug to take. Lectin-free paleo. Pureed and thickened food and drink. 101 supplements to keep the rest of the body as robust as possible. Sleep like a baby. There’s just a few cards left in this deck to play, and we’ll play them all.

I’ll write more, when I’ve something to relate that doesn’t just sound like agonized fretting over things about which, as yet, I can do absolutely nothing. I could write plenty of that! But I won’t … at least, not here, not now. Maybe one day. But not now.

Dave's Last Ride

2nd November 2024

Cheers to my One and Only -- the indomitable Dave Downes, who is out there on "Dave's Last Ride," with his cycling mates from the last decade of so, the "golden years" ... reliving the memories, recalling the good times, having fun. I'm so proud of him! Were you ever so proud of someone that your heart doesn't quite fit in your chest? Then, you know the feeling.

 
You also know me well enough by now ... I'm the eternal bloody optimist. I'll go this far: "Dave's Last Ride ... For the Next Several Years," until University of Sydney, or Sheffield University, or The Florey Institute -- whatever, whoever, wherever -- come up with answer to this thing. MND will be beaten, Dave will be there to see it beaten.

 
This story will have a happy ending, when he gets back on the bike and rides away. No one can say exactly when, but I'll close this post with a quote from Bruce Lee, who was wise beyond his years. "When you say that something is impossible, you have made it impossible."

 
Nothing, but nothing, is impossible, unless we make it so. And life is one big possibility ... if we will only allow it to be. Go, Dave!!!

Hanging on Tight

1st November, 2024

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.

Hitting Every Pothole in the Road

27th October, 2024

This is becoming a journal, and I’d love to chart our progress through the labyrinth of motor neuron disease, but on a day-to-day basis at least at this stage, little or nothing happens ― not physically or visibly. It all happens in the strange, claustrophobic little space inside one’s own mind. It’s all about what you imagine, and what you fear.

 
This is a journal of my own journey through the labyrinth, as well as Dave’s. This is where I record what I feel, day by day. Dave himself is doing pretty well at the moment. He’s holding it together and has just posted his official “Last Ride,” inviting old cycling mates to come and "tootle" with him and celebrate the memories. Cheers to him, and to all. Let it be a fantastic afternoon, one to remember forever. But my own little world is not so bright. I feel that I’m starting to lose the battle long before he does.

Tuesday brings another battery of tests. One is critical: Dave must pass the lung function test in order to qualify for surgery to fit the PEG (from medlineplus.gov: “A PEG (percutaneous endoscopic gastrostomy) feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall. It goes directly into the stomach. PEG feeding tube insertion is done in part using a procedure called endoscopy.”)

 
That sounds simple enough, save for the inevitable warnings about the hazards of surgery. Any surgery. Want an ingrown toenail fixed? Hazard. Huh. But the underlying “omigod” moment for Dave and me, and for Mike, is that the surgery may not be approved. If Dave fails the lung function test, they won’t do it. What happens then? [My stomach turns over; I feel weird; see sparkles in my vision] Well, he continues to take his food in liquid/puree form for as long as he can continue to swallow. And as the MND progresses, and he can’t swallow…

That fear lives with me, an unwelcome lodger in my mind, and will for the next couple of days. I have to believe he’ll ace the respiratory test. I have to believe he’ll come through the surgery with the proverbial flying colors. There’s no other option, right?

Have a little faith. But fear seems to have taken root in my mind; my imagination is running away at breakneck pace; I can’t stop it. Does everyone in this situation go through this phase, or is it just me? This isn’t about grief ― or even about sorrow. It’s simpler than that. It’s about dread.

Dave is already in middle-stage MND, not early stage. We wasted the early stage, calling it long Covid, expecting him to recover while 50% of his lung capacity fell away. This beast only has three stages, and the battle, now, is to see if we can use “alternative” means to force it into remission. I say alternative means, because orthodox medicine has nothing to offer. Nothing. Before we knew it, in less than a month, we went from “When’s Covid going to quit?” to “You’re middle-stage of a disease for which there is no cure.

 
Yes, my mind is still reeling. Yes, I’m still caroming from wall to wall, hunting for solutions, looking for ways to just slow it down, while we wait out the years for a medical breakthrough. But it comes down to needing that PEG to make the distance. Without that, well … yeah.

And the second fear continues to haunt me, every moment: homelessness. It turns out that the charity, MND SA, can find suitable housing for us, but only till Dave leaves us for pastures greener and new roads to ride. Then, the widow is out the door, in an environment where there are no affordable rentals to be had, no social housing, no provision for people like myself. Fact: the fastest growing minority in this country is women over 55, living in cars.

 
Terror seizes me by the throat and squeezes. I’ll share a small secret here. All my life, I’ve had one real fear. For some people, it’s spiders, rats, snakes, heights, the dark, all of the above. For me, it’s always been the fear of being homeless, and particularly old and homeless. The feeling of waiting desperately for someone to come and rescue me is back. So is the knowledge that no one is going to come. I must figure this out myself.

 
No available housing, so ― motorhome? I can’t drive something the size of a truck! So, learn, damnit! Come on, woman, you’re not that old or frail. Get a grip. Your grandmother was born in a Romany caravan, circa 1899 (seriously), there’s Romany blood in your veins. Make sense of this. Do it! Learn!

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.

Hope Is Like the Ocean

When your feet first carry you onto this road, you already know there’ll be “good days and bad days.” What you don’t realize is that hope is harnessed to these good and bad days like a Clydesdale pulling a barge. As she clops down the towpath, she pulls you with her. Her name is Hope. You go where she goes, and she follows the twists and turns of those good and bad days. On lousy days, pessimism breaks over your head like surf. On better days, optimism buoys you back to the surface, so you can take a lungful of air, see the sun shine. The Clydesdale never pauses, and as the saying goes, “The road goes ever on.”

We’ve been “down” for a couple of days. Dave's energy levels are inclined to crash fast, and when he’s exhausted … he scares me witless. The saying “dry mouthed with fear” is no exaggeration. This isn't ordinary tiredness. The weariness of motor neuron disease is profound. Soul-deep.

 
Then your endless research takes you to some webpages ― legit ones, not rubbish. You read something that puts the hope right back into you. (More about that shortly.)

I was going to call this post “Never Stop the Engine When It’s Hot,” borrowing the title of a book about flyers in the Himalayas circa 1930. I’ll write about the same lesson we recently learned, but there’s more to say here, so the emphasis has shifted. The “engine” allusion refers to the wisdom of never turning off an old plane engine while she was hot. Why? Because the hot oil was so thin it drained off, leaving the engine unlubricated when you came to restart it: the engine damaged itself.

 
It’s a fine analogy for what Dave did from Monday to Wednesday, his three days off last week. He’s still working. He shouldn’t be. After three consecutive shifts, he was so weary, when his break came at last ― yep, he turned off the engine. Wound down and down, so far that the result was illness. I can’t find another word. Now, let’s see you get this engine started again without breaking it.

Every mistake is a lesson, and you must learn from it. The lesson here is that along the MND road, you can’t afford to turn the engine right off. Put it in neutral, let it idle, but never turn it right off, because energy levels fall to frightening depths. So…

Nutrition. Supplements. Protein. Qigong. Kriya. Sleep. Exercise. The engine restarted, but he won’t make that mistake again ― which is disappointing, because everyone deserves the chance to completely unwind. It seems that with MND, bone-deep relaxation does more harm than good. Nobody tells you this ―

In fact, nobody’s told us anything at all yet. We still have four days to stew through till the next appointments (at Flinders Medical Centre), where the diagnosis will be confirmed and they’ll give us a prognosis that will, if I’m not careful, dump me back into the state of shock I’m only just managing to climb out of. Right now, I can’t think too much about it. When I do hear the prognosis, I need to remind myself, like chanting a mantra, they’re quoting averages … they don’t know Dave, his strength and determination. They don’t know me. And though they probably do know about the hundred-and-one things you could do to help yourself, I’d be prepared to bet, they won’t volunteer the information.

Which brings me back to the research, and Dave has scored his first bit of genuine luck. The best MND research, and results, are happening right here in Australia. An institute in Victoria has develop a stem cell technique. No, it’s not for curing MND. It’s for testing drugs about 100x faster than was ever possible before. Take half a century’s work, do it in five. Science is seeking drugs to stop motor neurons dying, and there are about a thousand to test. How long would that take?!

I’ll give you a shock. In the US, the average time it takes to go from the concept for a new drug till that drug hits the wards is 12 – 18 YEARS. Yes, you read that right. Too slow. But ... use the new stem cell testing technique. Suddenly, the promise of a drug that might not cure MND, but would arrest its progress, becomes possible in the time Dave and I have. And that drug would win Dave time enough to wait for the actual cure.

For us, this is all about winning time. And there’s something else: new research “suggested” that a certain chemical plays a critical part in protecting motor neurons (it’s complicated) and makes the surviving ones work better. You can buy this chemical, and it’s safe. Dave did. And took a tiny dose. Whaddaya know? He speech came clear for a couple of hours.

Now, there was an Aha! moment. There was light at the end of the tunnel. Hope returned … and yes, the road goes ever on.

Balancing the Energy Budget

Imagine that the energy you have in storage is cash in the bank. Any six-year-old knows you can only make so any withdrawals before the account is empty, so you better spend wisely and bank spare cash when you can for lean times. It’s only common sense.

So, why is it so hard to grasp this, when the same theory is applied to one’s energy reserves? Athletes know this. Go too hard at the start, you might not even make it to the end of this marathon. And any way you slice it, motor neuron disease is a marathon. Even the paltry three-to-five years offered by specialists at time of diagnosis is a marathon. It might not seem like it as you sit in the office, ice-cold and shaking in shock, but you can trust me: each coming day is a year long, and if their ballpark estimate of five years is 1,825 days (yes, I used a calculator), that time is a marathon indeed.

There’s time for good days and bad days. Mistakes and corrections. Setbacks and recoveries. First step: never be afraid or ashamed to make a mistake. Figure what you did ― admit it. But you must learn from the mistake. Don’t repeat it. For instance, in the very early days (not even two weeks ago) I thought it was smart to feed Dave peanut butter smoothies, whipped potatoes, banana cream. I was 20km wide of the mark. That’s a lifetime’s worth of Lectins (read: slow poison) in one day. Yet, this is the official, medical advice to halt the weight loss that results from the disease accelerating one’s metabolism. Put another way, the official advice is for an MND sufferer to jump in and poison himself. And if you question regarding those Lectins, the answer is always “More research is needed to prove that.” Translation: Give us another ten billion dollars. You’ll be milking the cash-cow to a standstill, if she isn’t already dry.

There was a time “much more research” was needed to prove that any galaxy outside the Milky Way even existed. This might sound crazy in 2024, but it was only in 1924 ― 100 years ago ― that proof came of one other galaxy beyond ours. You can thank Edwin Hubble, at Mount Wilson Observatory’s Hooker Telescope, for that irrefutable proof … and yes, before Hubble, (some) geniuses denied that other galaxies existed, or even could exist. The Milky Way was the entire universe.

Same difference with nutrition, and so many other things today. Securing enough proof to satisfy scientists would gobble enough money to build a city on Mars. And this, in an era where funding is scarce because everyone, everywhere, is broke. So…

We’re on our own devices. You have to break trail, bushwhack, be your own guineapig, experiment, record the results ― judge your progress in your number of good days by ratio to your bad ones. If you feel good 55% of the time, you’re winning.

They won’t all be good, because Lesson Two is about that Energy Budget I began with. The human body is a machine, and not even a very well-designed one. It’s filled with flaws that any good engineer would have corrected before even building a prototype. But here we are, and we’re stuck with it. You pay into the Energy Bank by eating and sleeping. You make withdrawals with every movement ― and as any student sitting an exam knows, your brain is chomping through carbs at an alarming rate.

Eating is essential. Power naps. Structured, intelligent exercise. My catchphrase at the moment is, “Always active, never tired.”

The eating must be planned, and if you run with the fact (proven in animal studies) that Lectin toxicity causes cellular apoptosis in motor neurons, you need to rewrite the menu, change how you cook. Power naps must come as you feel your energy starting to deplete. Sleep replenishes it. It just … does. If anybody tells me they want $10b to prove what any living creature has known since childhood, I’ll kick their shins.

Exercise is vital. MND causes the nerves that instruct certain muscle groups to ... fail So, the muscles don’t work as often or as well, and they atrophy. Weaken. Your mission is to get those muscles working, any way you can ― and this is possible. I’ve done the reading. Low/moderate resistance and cardio is recommended, which demonstrates that the MND-affected brain ― like the brain of a stroke survivor ― can find ways to “wire around” bad spots that have gone dark to keep those muscles working. If the brain couldn’t do this, no stroke patient would ever walk again. And they do.

But the Energy Budget must be at the forefront of your mind as you plan anything, a day or an hour. Yesterday, Dave’s batteries flattened disturbingly in the afternoon, after a wonderful start to the day. He woke listening to a garden full of birds, feeling good. Frustrating nonsense in the morning sapping his energy as if it ran down a drain. He crashed out so hard, so fast … well, I got really upset. Negative thoughts invaded my headspace. Frankly, I made myself so bloody ill, I couldn’t eat ― and that’s bad. Negative thoughts will drag you down. Thoughts make molecules. Bad thoughts make baaad molecules. Bad molecules will poison you. So, get into that positive headspace, stay in it … get that Energy Budget balanced, and learn to live again.

Guess What’s Coming to Dinner (and then shriek)

As we slowly, gradually, stop panicking and get to grips with the fact that Dave has won the “booby-prize lottery” and has Motor Neuron Disease, our research takes us in so many unexpected directions. Some of them are blind alleys; some lead to official information that is so puerile, it seems to have been written for people who can’t figure out for themselves how to dunk a cookie in a cup of coffee to soften it (yes, that really was the published advice for people who’re having swallowing issues). There are times you want to run around screaming.

The amount of misinformation out there is staggering. Read ten different nutrition specialists, you’ll get ten different theories, and they can not only contradict each other, they can contradict themselves. It would be true to say that their information is likely applicable to most people, most of the time. But what about if you’re not “most” people? About fifty million people in the US alone suffer from autoimmune diseases. That’s way beyond 10% of the population. If that percentage holds true for the whole world, at eight billion ― well, you do the math. And for that many people, diet could be the key to living … or not.

All those foods we thought were so healthy that we almost lived on them ― oats, tomatoes, bell peppers, eggplant, bananas, peanuts, so many more ― well, for most people, they are indeed healthy. But if you have an autoimmune condition, they spell big trouble. Anything from Crohn’s Disease (which was my mom), to arthritis (my grandfather, and me), to MS (that’s is Anna) to MND (that’s Dave) … yep, all autoimmune. So, what’s the deal?

Turns out, in each of these foods there’s a type of proteins called Lectins, and in some unlucky people, certain of these Lectins produce (grasp this and shriek) a neurotoxin that damages and destroys motor neurons. Yes, you read that right. There are loads of so-called healthy foods that are, in fact, slow poisons.

So, for Dave and myself, what’s the next step? Eliminate the Lectins, for a start. As many as you can get rid of. I don’t know how much of the damage caused to his motor neurons is the result of this slow poison, but it makes sense to at least try to “stop the rot,” and do no more damage if you can avoid doing it ... minimize the deterioration in future.

No, I’m not saying that changing your diet will cure MND. It won’t. There is no cure. Get your head around this, and the rest starts to make sense … or, a kind of sense…

What am I feeling today? Let down. Betrayed. I needed science to have the answer to this problem, after about six decades of research and enough funding to send a spacecraft to another star system. Where is the science? Where are the results? Where’s my cure, damnit?! (Calm down, Valkyrie ― put away the battleax, it won’t do any good.) But this is what I feel, in a nutshell. Let down, after spending my whole life ― and as the saying goes, I’m “as old as God” ― believing in science. Where is it when I need it? It’s supposed to be there for me. But it wasn’t there to rescue Carl Sagan, who passed over to the next dimension at the end of 1996 at the age of just 62, and almost 30 years later … it’s not here for Dave.

I’m … perturbed. Diagnosis is one thing, but that’s where the medical engine runs out of steam. All else they can offer is no more than support, literally hand-holding. I can do that myself. I could have done that a thousand years ago. I’ve been reading about the drugs that are currently under test. This is the pinnacle of our achievement: a number of Class A poisons that “may” benefit the patient, if he can live with horrific side effects until it’s time for a ventilator ―

What??!!!

There’s no answer to this, but Dave and I, and Mike, will soldier on. Find ways to do things, ways to live, create the “new normal,” and make it happy, rewarding. Remember, remember, that people can live for decades with MND these days, and several leading universities are expecting MND to be “history,” at quote Sheffield University, inside a decade. Are they right? Are they blindly optimistic? Are they just angling for more funding?

Who knows? But I have to believe they’re not wrong, not lying, and not just milking some cash-cow. The hunt is on for ways to “stop the rot,” improve Dave’s breathing, ease his swallowing, vastly improve his nutrition, stop the weight loss, rehabilitate the atrophied muscles.

Team Dave has (almost) stopped crying and panicking, and is getting its collective act into gear.

Next: Balancing the Energy Budget

Welcome to the Insane Asylum

This is me. Inside. This is what's trying to get out.

Sometimes, you have to wonder about the sanity of the people in charge, which, in this case, comes down to the specialist who ordered Dave’s MRI, the genius who designed the scan, and the juvenile operator of the machinery. Here you have a patient ― Dave ― whose condition is delicate, to say the least, and also specific. Given what the specialist already (thinks he’s) diagnosed, that specialist ought to know, fact!, that this patient cannot lie flat on his back at all, much less for a half hour. He should know that his patient is drowning in saliva, and that if said patient were to “aspirate” a drop of saliva into his lungs ― bingo: pneumonia, right off the bat.

So, what does the specialist do? Orders an MRI where Dave must lie flat for half an hour … and the genius in charge of the machine tells the man drowning in saliva and in real danger of aspiration pneumonia (which can be lethal), “Don’t swallow.”

What??!! You want to run around screaming, caroming off walls, bellowing about the stupidity and cruelty of medicine in general and (some; not all) doctors in particular. I’ve had a bone to pick with the diagnosing specialist in Kent Town since last Friday (this is Day 8, counting D-Day as Day One … and since that day was a century long, it counts). I have an axe to grind with him for calmly and emotionlessly handing out a death sentence, without grace, compassion or kindness. That is not clever doctoring; it’s not even good “humaning,” and I know there’s no such word, but there ought to be.

Top off that performance at the Kent Town office with the sheer genius of ordering an MRI that ― yes, fact! ― he should have known would torture the patient and possibly put him in the hospital, fighting for his life ―

I have discovered that a barbarian lives inside me. There’s a Valkyrie just beneath this delicate little five-foot-nothing exterior. She’s a savage with an axe who must be held on a tight leash lest she run amok. Suffice to say, I’m so angry, the Valkyrie is struggling to escape. I once told our GP “There’s a huge green rage monster inside me.” Well, she’s not green, but she’s quite the monster … and she has the scent of battle in her nostrils.

As I write this, those medical bas――s have reduced Dave to exhaustion, which is the worst possible thing for him. He’s sleeping it off, feeling like hell, and he said the words, “Never again.” (Oddly enough, the same words I said myself, after my last CT scan, when the same radiology clinic inflicted on me a dramatic reaction to the contrast dye needed for the test. They gave me a case of hypothermia that three-quarters killed me, and abandoned me in a corridor, in the middle of winter, dead opposite the doors, which whooshed open every 45 seconds, causing a wind-tunnel effect of icy air, blasting a victim who’d already turned blue.)

So, this was the MRI experience … 

What do I feel today? Furious. Angry. Ready to let out the Valkyrie, if it would do any good. But it won’t, and I know it won’t, so … home. Get him a warm drink. He gets into bed, trying to sleep off the effects of the torture while I rage, rage against the stupidity and witless cruelty of medicine in general and (some) doctors in particular.

There’s a saying that “A specialist is someone who knows more and more about less and less.” But that is not carte blanch to behave as if they’re utterly insane. It appears the inmates have taken over the asylum. And these are the people we trust with our health, to the point where they calmly, without grace, hand out what they believe to be a death sentence and then order the patient to be tortured and endangered.

Enough. No more. One round of tests remains, and I honestly don’t care what the final diagnosis is, because Dave and I have already faced the worst it can be, and the fight to not let this thing win has begun. No, I’m NOT saying motor neuron disease is currently not lethal ― and Dave almost certainly has the most severe kind of MND. But I’m reading case studies of people who were given five years and lived 20 or 25 because they managed it right … so, if Dave’s variety of MND is handled just right, the paltry amount of time these geniuses are going to quote as the rest of his life can, and will, be made into 10…

And 10 will get us through to therapies that will win more time … and more … until the cure is in his hands. It’s all about winning time. One thing doctors won’t do is help us in this quest. They’ll offer palliation, keep the patient comfortable until ― until ―

Nope. So, it’s a strict paeleo diet (I’m relearning how to cook; and more about that in my next posts), Kriya, Qigong, structured exercise, nutrition, and very soon, acupuncture. I’ve just read a clinical study on this that made my radar turn on. But no more witless cruelty, or else…

I swear it, the Valkyrie will get out. And when she does ―

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.

The Journey Begins

D-Day + 4 … how am I doing? (That’s Diagnosis Day, and it broadsided me with all the force of the Normandy Landing, so the term is actually fitting.) I’ve had three straight days of an ongoing panic attack, ice cold, shaking from head to foot ― hardly able to stand ― and inclined to cry without warning, and cry for a looong time … Today, I’m almost over the crying part. Not quite. The tears still come, but not quite as often, and I can get them under control faster. It’s not healthy to shut them in, bottle them up, but the blind panic has to stop at some stage or ― without exaggeration ― I’ll damage myself. So ―

Four days on, and I’m more rational. The work has begun in earnest to halt, or slow down, the ridiculously fast progress of this disease. I hadn’t realized Dave’s condition had deteriorated so far, so fast. It’s only taken six months and his athletic performance is probably eroded by about 60%. That’s dangerously fast. So fast, it scares me rigid every time I think about it.

What do I feel? A crazy blend of fear and sorrow. The grief is anticipatory. There’s no need for it yet, but the mind leaps to the most obvious conclusions and you just can’t stop it. So, like any process of grieving, you let it run its course ― and it does. I’m not saying that I won’t spontaneously cry in a week, a month, a year, but I believe I’m rational again. Thinking. The fear is much more difficult to defeat. It’s the fear of being left behind. Separation. Anybody who ever lost a loved one knows exactly what I mean; no need to belabor the point. But that fear is very real, and it’s like a paralysis that invades body and soul. It also passes, but for those minutes, it’s pure torment.

The only defence against the fear and sorrow is action. We’re trying ― weeks ahead of getting a shred of help from any specialist. The inequity of the situation is that this disease progresses to fast it’s frightening, and yet you wait weeks for tests and an appointment with whatever specialist … it’s as if the specialists have already accepted that nothing can be done, and they’re just there to “make you comfortable while you fade away.” Well, nuts to that.

Next step: research. What can you do? What can you take? How does exercise work for MND? What makes it worse? Is MND one of the autoimmune diseases?

Many things have already come out of the research, and I’m guardedly hopeful. No, I’m not indulging myself in denial, which is a bind alley in which one hides, hoping to wake up from a terrible dream. But rest assured, research continues apace ― not so much in the US, where government funding has, frankly, sucked, but in Australia, Japan, the UK, and doubtlessly other countries too.

Is there hope of an eventual cure? Yes, there is. University of Sydney is very optimistic indeed about a complete cure “inside of a decade.” So, our challenge, and our ambition, is to find ways ― any way, every way ― to retard this disease to the point where its progress is slooooow, and Dave will be around in 2034 to take the cure, take the rehab, get back on the bike and ride away.

What are we doing? Nutrition. Exercise. Weight lifting. Cycling (not to the point of exhaustion). Specific breathing techniques (have you heard of Kriya Yoga? Look it up). Balance exercise, like Qigong. We just got a tip regarding the link between gluten and autoimmune disease, and when I chased this up, I soon discovered that two separate studies have very recently identified definite pointers to MND being autoimmune.

It’s as if Dave’s “autopilot” has broken down. Speaking, swallowing and breathing are things most people take for granted … they’re automatic. Well, one day they stop being automatic, and you have to “fly this bird on manual.” Think about your breathing and swallowing. O…kay. It’s not the most fun thing in the world, but he can do that. And when he does ― with a Kriya “cycle” between swallows if necessary ― he’s actually swallowing and breathing quite well. At least, that’s what I see, as I watch.

We’re in the process of rearranging the house to make things easier. He’s just changed to an electric razor. Bike ride this morning, and no lousy aftermath … massive amounts of nutrition, and a genuine uptick in his energy levels. There’s more that’s already being done … and more that will be done in the coming days, weeks, months.

So ― guardedly optimistic. I can definitely see an improvement in Dave after a huge blast of nutrition and … “other stuff.” What can we actually achieve? I honestly don’t know, but if you don’t try, the result will be nothing at all. What’s the goal? To “wind back” Dave’s condition by six months, or even three, if that’s the best we can do, and then hold it there for as long as we possibly can, while we wait for the monoclonal antibodies and the stem cells, and the new drugs, and all the rest.

The path will take years to tread, but the journey has begun.

D-Day. The worst diagnosis in the world

So, what do I feel today? Overwhelmed? Yes. Emotional? Yes. I'm still at the stage where one is likely to cry without notice and then, five minutes later, spring up with clenched fists and say, "I'll be damned if I'll just roll over and play dead." Motor neurone disease is one of the weird ones, and rare enough for there to be a great deal of uncertainty and misunderstanding about it. Its incidence in the general public is increasing every year, though. (Not because people are living longer, because, generally speaking, diagnosis comes waaay earlier than the thresholds of life expectancy.) So, as time goes by, more people than ever will be "living with" this condition, and the uncertainty and misinformation will lessen.

I say "living with" the condition, because when you get your teeth into even the most superficial research, you find that people are living decades with this thing, rather than the three to five year average that your neurologist will  calmly inform you before, shattered and shaking, you walk out of the office and try to force your brain to work.

What's the difference between a three to five year estimate, and the several decades that some people live with MND? Part of it is going to be attitude. As I just said to Julie Thompson, Dave Downes and I have already grabbed this particularly nasty bull by its horns, and I swear, I'll twist its head right off its neck before I let it win.

Why the struggle, if "the end" is inevitable? Because it actually isn't. I have to admit, the emotionless prognosis from that neurologist, not 24 hours ago as yet, left me floored. Yes, shattered. Then you get up, dust yourself down, and you start to learn. Two things come out of even that superficial research.

One: numerous biochemical supplements have a colossal effect on the symptoms of MND. Take them all, and reduce it to the level of a lousy, nagging nuisance. At that level, you can stay fit, stay active, stay strong. The stronger you can stay, for the longest time, the longer your life is going to be. And this is crucial, because --

Two: I was on the Victorian Government's webpage last night. Turns out, there are two kinds of MND. One is genetic, and is ... not. Hold onto your hat. The genetic one will be cured in three years.  Yes, you heard that. Straight from the Vic government, not a crap page trying to sell a scam product. This is the real deal Now, only 5-10% of MND cases are genetic, but if Dave is one of these, he'll be among the very first survivors who quite literally walked away from this, in about 2027. Even if he's among the other 90%, the Victorian Government page quotes that the cure will be along within the decade. 

That's why you stand up and fight. To still be there when the cure happens, about 2034. Along the way, there's already a drug, TGA approved, that will delay the onset of really bad symptoms and extend life by up to 19 months. I'll grab hold of that. Research overseas (I think it's being done in Japan) is focusing on how to use programmed stem cells to replace the dead or dying neurones. 

There's more. A lot more. It's well, well worth getting the sleeves rolled up and fighting hard. That's the plan.

Right here, I want to thank Mike Adamson, my brother, for his help and unstinting support as this journey begins. Kid, I owe you a whole bunch. Dave and I are going to do this. It is GOING to be done.

There's nothing like a contributor's copy in your hand!

 

One of life's greatest pleasures is receiving the contributor's copy of a magazine you're appearing in. This is the third time I've been in ANALOG, and the thrill is huge. I'm hoping to be there again, if not late next year (probably won't happen, due to the gapping between appearances -- I think it's sixteen months, so 2024 will expire before I "get my turn," which is absolutely fair) then in 2026. I have a longer story to pitch this time, and am unsure, as yet, if it's even appropriate to show the editors something that's better than twice as long as Firegrounds. We shall see. 

Work on my new novel, The Gift of Prometheus, ploughs ahead apace, and it's looking good. I have one or two smaller literary jobs to tidy up before I start writing, and then -- time to stop talking about this and, as the slogan goes, "just do it."

Have spent a nice afternoon processing images from January to early May this year -- something of a "lost months" era. We actually did a lot, but getting Covid in late May put the mockers on everything. I filed the images, then got so sick, I quite literally forgot them all. Also forgot all that we had done, and seen, and all the places we went. Since Yuletide, I've been so captivated by the new camera that this is the first time I've stuck my nose into the old Lumix folders. Well, now! Okay, the resolution isn't what I've come to expect (read: demand) these days, but there are some lovely photos there. Stand by for posting!

Nothing else of note is happening. Certainly nothing worth blogging about! But I will certainly post a "Retrospective of 2024," very soon, and leave a few notes here about where we went, what we did. 

The major question is, what happened to my memory?! I have to wonder if Covid does something to it, because after getting the virus for the third time in May, the previous four months were just blotted out. Harrumph. 

Touching base in September ... because

 

Spring woods at Manning Floral Reserve

Touching base in September, because it's already the middle of the month, and if I don't do it now, I'll lose contact with this blog again. And it's not so easy to pick up the threads. Not that there's anything in particular to report on a personal level. There's been no breakthrough on the writing front -- certainly no contracts or sales to report. What news there is has been so uniformly sad or lousy that I couldn't bring myself to blog about it. August 17th, the news broke that Back Caviar was dead -- and that was a heartbreaker. Just yesterday, James Earl Jones passed away, though he did live to be 93, where as "Nelly," to use her stable name, was a day short of her 18th birthday, which is young for a horse ... and her foal died a day later. I think she took him with her. Add to this, the last few months have been a blizzard of migraines, with the high point being four in eight days. I've spent a lot of recent time at the end of my rope, which doesn't make good blogging fodder! 

On the other hand, my romance with the Canon EOS continues apace, and I'll illustrate the main body of this post with photos that depict that romance, rather than just babbling about a camera and the places we've visited. In fact, we're going to all the same old places, albeit with a new camera. And even this was fraught with not-so-good luck. We were on our way back from Nangawooka just yesrerday. Bam! One hell of a bang, at highway speeds, and, just like that, we need a new windscreen. It was only this morning when we discovered (phew!) it's covered by our insurance. Praise RAA, may blessings be upon it. Now --

The main subject of this post is a ramble about books, writing, reading, publishing, and selling the dang things. Here we go.

Noisy Miner, Milang

Purple Swamphen, Strathalbyn

...It's worth reporting that I'm actually writing again. I'm at the treatment stage of a new novel that has the potential to either be huge or a trilogy, possibly both; and with about 25,000 words "on paper" at this point, it's safe to actually say that yes, I am writing again. This one is an SF piece called The Gift of Prometheus, and it's as far from anything I've written previously as could be imagined. Which might mean that it'll be the most saleable piece of writing I've produced in thirty years, lol. Sure, I had some genuine early success, circa 1990, but it wasn't sustainable -- not over the lifetime it takes for a writer to be successful unless s/he is going to sell millions of copies, which is highly unlikely. So...

Ripe brambles, Belair NP

...just lately, I've been listening properly to what people are saying about the books they love, and matching those remarks to the books themselves, and to the success of those books. Because the success of a book at market is a geometric measurement of its saleability, yes? Yes. By looking at YouTube, and reading Goodreads, and then actually buying and reading the books (!), I can say, without hesitation or fear of contradiction, that the quality of the writing -- the prose, the structure of the narrative -- has nothing to do with the success of a book these days. Perhaps in the past, it did, not now. Now, it's all about the story, plus how and why the central characters strike a chord with the reader, and how easy the book is to read. Ease of reading is more important, apparently, than good grammar. Characters with whom younger readers identify and empathize are more important than a well-written and well-structured book. O...kay.

McLaren Vale Visitors Centre

Like it or not, this is how the market shakes down in today's reading world. Publishers only exist to sell books, and they have to be able to sell them -- which means a writer has to be able to supply what readers will pay for (and this in a world where you would read forever without buying anything, because billions of words are archived online), which of course kicks back through the whole machinery, the train of reader - bookseller - publisher - agent - writer. It comes down to the inescapable bottom line: it's the reader, the end-user, who is driving the market. Publishers know this. They tell agents what they want. The agents select from a never-ending Niagara Falls of submitted material, choosing just what they think (guess; judge; hope) will woo the reader to spend $12 for this book in a year or two. So --

blossom, Strathalbyn

-- just what is it that this hypothetical end-user wants, and will spend a few bucks on? To answer that, you have to know who the end-user actually is. It might be a middle-aged man who wants a non-stop supply of Tom Clancy and Clive Cussler. It could be a septuagenarian lady who wishes there were a hundred novels on Colleen McCullough's backlist. But if you want the real money, today -- the kind of royalties that come from millions of books sold, well...

canola, near Milang and Langehorne

...any one writer can't write to all of those marketplaces. A twenty-something woman who writes romantic fantasy (a cross between Harlequin Romance and Game of Thrones) probably can't write to Tom Clancy's readership with any hope of seeing the real money we all need to pay the rent, and vice versa. The writer is pretty much compelled to pick a marketplace and write to it. There's an old saying: "A writer must write of what she knows." (Yes, I know the original saying was "he," but I'm not a guy, and in today's world, everything is trending female.) So, being a female, I started to look at what women are reading, and which women are reading, and how much they're reading. Hmm. This is where it gets interesting.

full moon, stormy sky, from the backyard

It turns out that the big-success sellers among female readers are aimed at the New Adult market, or the late-late YA range, where kids are so close to grown that it's difficult to draw a line. I chased down three recent, real successes: the Leviathan trilogy (not so much this one, actually) the Hunger Games trilogy (this was big), and the ACOTAR series. A Court of Thorns and Roses ... the one that's being banned left and right in school and college libraries in the US. Yes, that one. 

Now, Leviathan was written by a middle-aged male, and after reading it -- and having various misgivings about the apparent "childishness" with which the mid-teen characters were written, I followed the book to Goodreads and -- whaddaya know? Young(er) readers are saying the same thing. Scott Westerfield is writing for the kids he remembers from 25 years ago, not kids as they are today. I thought Leviathan was really good, but it's the kind of book that a parent buys for their 12 to 15-year-old, likely not the book kids would buy for themselves. This isn't to say it's not a terrific read -- it is. But it would suit readers several years younger than the age of the main character, but 11 or 12 is not the lucrative marketplace where kids have bucks for books and are actively out there, looking for them ... hunting, in fact, for the books they're all talking about at school. But Leviathan is on the right track, centring as it does on a young woman coming of age and making her mark in a man's world -- in fact, in this context, a steampunk First World War scenario. 

Hunger Games, meanwhile, is the kind of novel that gives parents nightmares while mid-teens revel in it. Dark, dismal, cruel, violent, with a thread of awkward, dawning romance, hints of sensuality, though there's nothing overt in the first one, where the central character is 16. The violence and cruelty are deliberate, often heavy-handed. Suzanne Collins was definitely writing for mid-late teens, and knew her target audience. Really, seriously knew them. She was older than this at the time when these books were written -- I believe she'd have been 45-ish, whereas her readers would have been 16-23, either the same age as the female hunter/warrior who is central to the story, or just a little older and easily able to look back and remember being that age. Hunger Games was also filmed as a major movie trilogy, so, whereas Leviathan was on the right track, safe to say, Hunger Games nailed it. For a start, the first book sold 800,000 copies, which is getting up there, although nowhere near what can be, and has been done, by other writers in a similar vein...

Take it to the next level. A Court of Thorns and Roses has several things in common with these other two projects. It's aimed at young and very young readers (Hunger Games scored; Leviathan missed the target by a whisker but hit the parents and grandparents instead, meaning it would be gifted at Christmas and birthdays ... not enough to drive a monstrous bestseller, but not too bad at all). It's dark. It's violent. It's cruel. It's written in a prose style that is so stripped and bare, it's often gauche, clumsy, amateurish (and indeed, in ACOTAR, one finds a blizzard of grammatical errors, wrong-word errors, non sequiturs, incorrect word order ... the kind of mistakes a good editor should pick up and correct. This was not done, and one speculates that the sheer clumsiness of the narrative line is some kind of "youth speak," where this is the language in which one speaks to, and with, readers aged 16 to 23 -- i.e.., the work's target marketplace).  And a young girl is the central character: in ACOTAR, the action pivots on Feyre Archeron, who is about 18 or 19, and who tells the whole saga in first person, past tense.

A pattern emerges. 

Roo, Happy Valley Reservoir

Highly successful fiction these days tends to have female heroes. Young female heroes. Very young. They're hunters and warriors, fighting against the odds. They're mostly impoverished, borderline starving, underdogs, struggling against the current in a male world. It's a dark world, brutal, cruel, dystopian. War is either looming, is happening, or has happened. These teenage girls are without exception strong, athletic, also probably stunningly beautiful into the bargain, though they themselves don't (yet) know it. They're indomitable; they also appear to be indestructible -- which is a direct holdover from generations of movies and television, a trend that began with Leia Organa, continued through Ellen Ripley, Sidney Bristow, Peggy Carter, Rose Tyler, forged ahead through Daenerys Targaryen ... and the pedigree culminates in our own decade with the aforesaid Feyre Archeron and Katniss Everdeen. Young. Stunning. Indomitable. Indestructible. 

There is one more level that this archetype can be taken to, and Sarah J. Maas was the writer with the foresight and the guts to do it. Oh, it's been tried before, but the marketplace had to be juuust right before it was going to work like magic. You take the above formula, as explored by Leviathan (characters written too young, by a Dad figure who slightly misread his readers) and Hunger Games (the narrative explores romance; the writer pulls up short of crossing the line into more adventurous territory that might get the book(s) banned in school and college libraries), and yep -- you add sex. The explicit variety, which has been what teens have always really wanted, irrespective of what parents, teachers and priests have preferred to believe. Hey, I was a teen once myself. It was many, many years ago, and even then, my peer group was smuggling porn to school, albeit books and magazines whereas nowadays it's all about phone-driven images and videos, served by websites that may not even be legally available to younger kids. Legal or not, the stuff is circulating, and over the last decade, kids have lapped it up, with the result that teens are maturing faster and faster -- fast enough, in fact, for parents and teachers to be left behind and choking on their dust. Their kneejerk, in the US, is to ban the books. No surprise there 

(I'm not here to debate the merits of growing up fast, or at what age curious, hormone-driven teens should be legally entitled to access adult entertainment. I'm too old to intuitively know where teenage heads and hearts are today. Neither am I an educator, parent or even grandparent who has contact with them to learn where those hearts and minds are, and what they might want and need. All I would do is offer up an outmoded opinion, sound like the dinosaur I probably am (chuckles), while adding nothing useful to a debate that belongs to other, better suited individuals.)

You take Harlequin romance (the Mills & Boon style of frills and swoons love story). You hang it on an indomitable, indestructible, impoverished, starved, barely educated, stunningly beautiful 18 year old girl with a bow and arrow. Now, you set the story in a dark, dystopian, cold, muddy, male dominated future under the shadow of war. Last step: add sex. Did Sarah J. Maas invent this? No. People have forgotten than Daenerys Targaryen was about 14 when her brother sold her to Kahl Drogo. Sure, she went on to be the Mother of Dragons who burned down empires, but she began right where the others began, with such preplanning that it would be fair to say George R.R. Martin was the first who took fantasy to the next level ... except that A Song of Ice and Fire is not "frills and swoons romance." 

What Ms Maas did was to read her marketplace with genuinely awe-inspiring precision. Your readers are female, 16 and hormonal; they love Game of Thrones, Witcher, Carnival Row, Lord of the Rings; they're steeped in fanfiction, reading millions of words of largely-unedited amateur writing; this is their main source of sexy romance; unpolished prose speaks their language ... either that, or they honestly can't see the grammatical gaffes, the errors in the writer's craft. ZTF Zero Tolerance for Punctuation, yes? Your reader is looking for something that speaks their language, tells a vast, windmilling, fastasy saga about an 18 year old girl who's (!) indomitable, indestructible, impoverished, starved, barely educated, and whose feet are on the path that leads to tearing down empires. 

A pattern emerges. And it sells -- ooooh, a lot of copies. ACOTAR is five books long, and each volume has sold about two million, in 38 languages. Okay, so that's the formula. It's the formula devised from actually listening to readers, respecting what they say, and reading the books with an open mind. Sure, I can see every single grammatical and writing gaffe, and I'm not going to criticize, because Ms Maas is the one who has sold 38,000,000 copies while I'm still wondering if I can score an agent! I have no taste for sour grapes.

But I do wonder how The Gift of Prometheus should be crafted. Oh, yes, I do wonder.

And that's where I am at this point in time! Just finishing the treatment version of a novel, and beginning to wonder -- with a somewhat mercenary train of thought -- how it should be crafted to appeal to a readership that's looking for something "new but the same." One only writes for the sheer fun of it up to a certain point. Past that point, one has bills to pay. One would like to buy a house in the country! This particular one would like a facelift, lol, and there's forty grand before we launch ourselves off the starting blocks! So --

Vale Black Caviar. May you run forever where the stars meet the greenest grass ... thank you for the memories. It was ... glorious. Nothing short of glorious.