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.