Corners, turned

img_7717Stagleap Provincial Park

I haven’t written in some time, but not because I’ve been feeling poorly. Just the opposite, in fact.

As the reality of ALS hit, and sank in, and various stages of grief were navigated, it gradually became…normal. Our new normal. And with it came a dramatic mental shift for me. But it was rough sailing, through choppy seas, and I didn’t dare take my hand off the wheel until I knew I was in safer, smoother waters. I focused on changing my outlook, my lifelong pessimistic, malcontented view of the world, and searched for mindfulness. And eventually, I found my way around the corner.

Of course, turning corners means you run the risk of running into a wall, and so we did when we unexpectedly lost our Newf Jack to a sudden illness. He was 10, a decent age for a Newf, but I thought he might outlive me, and I miss him terribly. Part of me was a little relieved that there is one less thing for my husband to worry about, such is the nature of this disease and knowing what it holds.

But knowing what it holds has become a tool for me in learning to focus on the moment. While I know what the end result will almost certainly be, I don’t know exactly what roads will take me there. So, I can’t worry about what I don’t know.

Being in the moment is not easy, and those who can do it naturally are gifted, as far as I’m concerned. A ton of work is involved in changing one’s outlook, and I have somehow, against the odds, done it.

Never in my life have I been so at peace with myself, so still. I laugh daily. I enjoy things for what they are, and have learned to see, to really see, what’s in front of me. A new sense of gratitude has settled in, and a sense of freedom, as odd as it may sound. Oh, I still have my moments, after all, I am a menopausal woman with a terminal illness who never operated on a even keel the best of days.
But those moments are few and far between.

No, it’s not a form of denial. I am reminded daily of my physical deterioration, of the hollows and troughs and creases where muscles used to be, of the growing number of daily tasks that have been relegated to the past, and the frustrating feeling that we are always one step behind in trying to get a grip on adjusting to each loss.

Nor have I stopped looking, researching, reaching out to other pALS. I’ve just found the balance between having ALS, and letting ALS have me. Hope lives here.

How I got to this place involved, involves, a lot of work and support and I’m lucky enough to have both a great health care team, as well as an amazing circle of family and friends who have stepped up in unimaginably selfless ways. And of course, my husband Mike, my reason for living and fighting.
(They all deserve more credit than a few passing lines, so I’ll get back to them in future posts.)

We’ve not long returned from an extensive trip throughout mainland BC in MoHope, and I look forward to sharing some of our RV’ing adventures with you, among other things.

I promise to not be away so long this time.


The Other Shoe Dropping…

After 6 weeks of mental torture, we made our way to Vancouver today to see the ALS specialist. 

At best, a sliver of hope that perhaps the original diagnosis was wrong. At worst, she would be telling us something we already knew. 

Then, a few days ago, I was gripped with a sense of impending doom-there would be worse news coming, I was sure of it. 

Sure enough, it was as I anticipated. Based on my decline, the doctor confirmed that yes, I was moving in a faster progression than the average. 

It was a shock, and yet not. In some ways a weight is lifted- there is nothing more I can hear about it, and nothing more I can do about it. 

I am right now, as the song goes, comfortably numb. 

Fight or Flight?

fightflightFight or flight, basic survival instinct. When faced with a life-or-death situation,do we run, or do we turn and fight?
For the most part, I’ve always had more of a flight response. Conflict avoidance, removing myself from uncomfortable situations, avoiding the bullies in the hall kind of thing.

When a very dear friend was diagnosed with breast cancer, she sent out a text saying “Today is my first step in becoming a breast cancer survivor”. And with inordinate strength, grace and dignity, she became a breast cancer survivor.
“Death”, she told me later, “was not an option.”

I wondered at the time if I would ever have that fortitude, if I could ever stand up to something like that. I believe that mental health plays a big role in physical illness, and how we get through challenges. I’m not saying you can “will” yourself better, anymore than you brought it on yourself with bad thoughts, but that some brains are wired for survival with a particular strength of character.

My own brain, I’ve always thought, is not wired that way. I’ve tended to carry a defeatist, glass-half-empty, malcontented mindset. And so I thought that should I ever get cancer (because to my mind at the time, that was the worst thing that could happen) I would likely be one of the ones who just curled up in the corner and waited to go; like if the cancer had an 90% survival rate, I’d be guaranteed to be one of the 10% that wouldn’t make it.

And now here I am, in the ultimate fight/flight situation. Except, there’s no flight option. I’m backed into a corner, and the only choice is fight. I recently read an article quoting a doctor who was opposed to physician assisted suicide. This doctor was haunted by a patient to whom he’d given an ALS diagnosis. The patient immediately flew to Switzerland, and ended his life. The doctor felt that because the patient was in the early stages of ALS, and still likely had several years ahead of him, that he acted prematurely.

Well, let me tell you something—I can see where that patient was coming from. The mental torment of an ALS diagnosis is excruciating, the worst pain that I’ve ever experienced. I have questioned daily how much more I can stand and how much I can put my family through, and will continue to do so as I progress.

A couple of weeks ago, at the month-in mark, I thought I was getting a handle on it. I was seeing more ups than downs, having good times, and able to laugh. I was finding an inner core of strength I didn’t think I had.

Then the ALS society sent over some equipment that I might need, which at the time of assessment, was “for the future”. And the future is now. All of it, I now need either casually or regularly, and unlike a situation where I’m using it until I get better or stronger, I’m using it until it’s not enough and I have to trade up.

The grieving process starts anew, at things I’ve lost, and this will continue until all is lost.

So I’m back into flight mode—but again, nowhere to run, except death. And the thing is, that’s where the disease is taking me, so it’s not the same as running, just taking control of how fast I get there. Just like getting an earlier plane than the one I’m scheduled for (except nobody gave me the flight number, so I’m not sure when it is, just the plane is on the runway). Don’t be alarmed, I’m not in crises–I’ve thought about it, but right now have much to live for and living still to do.

And with no flight, that leaves fight. I can’t say I’m not well-armed for a fight, not at first glance. Support abounds, be it medical or moral. I’ve written of the amazing support the local ALS society provides, and my family and friends, and my husband for whom I live. I’m as well equipped as anyone could hope to be. This is not a disease where having a gazillion dollars helps, because there is nothing, no obscure cure, no Big Pharma holding a vaccine hostage for the privileged few, nothing.

There’s only the tiny percent of people who do beat the disease, and although some have claimed reasons for their success (faith, hyperbaric chambers, energy healers) nobody really knows why these outliers succeed, and so there’s not even a plan of attack to adopt and adapt.

I gird for battle in control of only one thing: my mindset. Is it strong enough? Do I really believe I can affect my outcome, or even quality of life, based on the way I think? Can I rewire my brain circuitry? There are days I think I can, that I can beat the odds and will try anything to do just that. Other days, I think I won’t make it til Christmas.

I sail into this battle knowing that no matter how well-armed my armada, no matter how many support ships and sailors, there will be only one direct casualty. And when that happens may well depend how long I can mentally engage the enemy before hoisting the white flag.



So…what CAN I say?


The best responses to the news of my diagnosis have all been from the heart, unedited, unfiltered, just exactly what the person thought upon hearing. And seeing as how I’ve told you all what not to say, the least I can do is give you suggestions for what’s okay, right?

These are the ones that come to mind, the immediate responses, the ones from the heart.

1.  That sucks.
2. That really sucks.
3. That fucking sucks.
4. I’m so sorry.
5. I’m really sorry.
6. I can’t believe it/it can’t be true (said with sincere shock and disbelief)
7. Unintelligible babbling accompanied by tears.

The thread that binds them is that they are all authentic responses. None of them involve thinking of what might be the “correct” thing to say, or the candy coating of a meaningless platitude. All of those responses allow me to agree wholeheartedly, because yes, it does suck. Yes, I’m sorry too. No, I can’t believe it either. Bawling.

As to what comes after? Take your lead from me (or insert your afflicted person here). If I want to be open and talk, please listen for a bit.  Some people don’t mind answering questions about their disease, and I don’t mind answering because so few people seem to know much about it and how devastating it is. Any question asked sensitively is okay; if I don’t feel like talking about it at a particular time, I’ll let you know and I won’t be offended that you’ve asked.

If I’m seeing you for the first time, that’s going to be the hardest; after that we can resume our regularly scheduled friendship. As the shock has worn off, I’m less likely to talk about it or want to focus on it.

And something I should have added to yesterday’s post:

Please, do not judge my response. How I chose to handle this news, this devastating, life-changing news, is up to me. You get your own devastating life-changing news and handle it however you want but don’t you dare judge me and if you do? Have the decency, the humanity, to keep it to yourself. Because this is not about you. 

It’s one day at a time with this disease, so this is where this post ends; it’s just about what happens when you first hear the news. One day at a time.

For the hundreds of heart-felt responses, thank you. You may not see your exact words listed above, but that doesn’t mean they are any less important.❤


What Not To Say


Over the past few weeks, since my ALS diagnosis, I’ve gotten a huge amount of support and encouragement (which I’ve referred to often.) I am thankful for it, and draw great comfort from it.

But there are those, whether through a misplaced sense of authority, an overestimation of the depth of friendship, or just plain ignorance, who have asked and said some things that are range from insensitive and unsupportive to offensive and hurtful.

So here’s my list of What Not To Say to a Newly Diagnosed PALS.
(And this is my personal list, others with terminal illnesses may disagree.)

1. I understand.
Unless you have ALS, no you don’t. There is absolutely nothing that equates with a disease that will slowly and progressively make you a prisoner in your own body, robbing you of every motor skill including your ability to move, speak, eat, and finally, breathe, and all while your mind remains acutely aware of what’s going on. And it will do all of these things on its own timeline, unique to each individual: unpredictable, relentless, unstoppable.
You most certainly do not understand.

2. You got this! You go girl! Atta girl!  Keep positive!
Artificial cheeriness, save it. It only serves to diminish the struggle and be annoying. See also: Sanctimonious religious talk e.g. “God never gives us more than we can handle”.

3. You should/You must/You have to
No, I don’t, and please do not start a sentence with it. Anything I must, could, or should do/have done, I’ve got it covered. This includes trying such things as quack “cures,” trendy “treatments” and the all-purpose healer du jour (I think this week it’s coconut oil and turmeric).

4. My friend/hairdresser/cousin/whoever knows someone who had that and has been alive for years!
See numbers 1 & 2. Yes, there is an impossibly small percentage of people who live longer than the statistically backed 3-5 years post-diagnosis. You have a better chance of being hit by lightning, being eaten by a shark, or winning a lottery than being one of those people. This is not comforting. Related: When Mrs. Coleman/Mr. TIzzard/whoever had ALS, this is what happened to them. See #1.

5. There must be a cure/I don’t believe there’s nothing can be done.
You’re right. There is, but in keeping with current conspiracy theorists, Obama is keeping the cure in a bunker in upstate New York with Elvis, JFK, and bin Laden. Or maybe Stephen Harper took it with him to spite the Liberals. 

6. You’re going to need a wheelchair/feeding tube/BIPAP machine/insert medical equipment, treatment, or any future needs here.
I don’t care what your medical/health services background is. Unless you’re part of my own medical team, keep your thoughts to yourself. Do not rush me through this process. Do not presume to know that you can predict my progression, or my needs. I give them enough thought. Remember #1. My brain, such as it is, is intact.

There are plenty of things you can say, and most of you have said them all. For you, I am grateful.❤


MoHope on the Malahat

“Been over the Malahat yet?” was a question we’d heard often in our early days in Victoria. Sometimes phrased as “Gone up the Malahat yet?” or the shortened “Over the ‘hat yet?” was posed. Whatever the wording, there seemed to be undue interest in our travels there, and what we thought of this Malahat.

The Malahat, spoken in tones of hushed reverence. The Malahat, that geographical feature that separated the southern tip of Vancouver Island and the rest of it, referred to as “up Island”. To get “up Island”, one had to cross the Malahat, and this Malahat was clearly of some great import. The very idea of “Crossing the Malahat” became almost mythic to us, conjuring up images of Hannibal crossing the Alps.
Elephants nothwithstanding, the day finally came when we decided it was time to venture up Island by way of the Malahat, and off we went.


Well then. So much for legends. Turns out the Malahat is little more than a hill. A 1150 meter hill, with a couple of lovely look-off points that afford spectacular scenic views, but…a hill.
We laughed, and laugh about it every time we take the TransCanada up Island.

But one thing we do enjoy about making this trip is that it brings back a memory we both have of a road atlas we saw in our childhoods (Reader’s Digest, perhaps?). The atlas has a picture of a 1950’s camper on a curving highway road, taller than east coast trees soaring into the sky. It looks like it could have been taken at the base of the Malahat drive, and so it’s a little like time travel for us when we slip past Goldstream Park and begin the climb.

And so it seemed fitting, when deciding on a place to take MoHope on her maiden voyage, that we bring her over the Malahat. Not all the way over, there was a perfect place right on top–the RV park that time forgot. An RV park and cabins, with signs that look like they haven’t changed since the ’50’s or’60’s; a more modern restaurant and lodge across the highway, and a small store of the same vintage as the RV park. Yes, this is where we would spend our first RV night.

It also fulfilled the recommendation of experienced RV’ers that the first trip out should be close to home, in case of major system failures. This “shakedown cruise” would be to pinpoint deficiencies and detect issues that are common and expected in new motorhomes, things that we’d have the dealer fix. (Spoiler: MoHope had a couple of minor issues, nothing worth covering here.)

Well, except for one thing, maybe. As the cook in the family, I was responsible for listing the equipment and groceries, and ensuring the wonderfully efficient little kitchen was outfitted properly.


I had one job.
Fortunately, across from the campground there’s a restaurant and bakery, and the purchase of a couple of cookies also secured a pair of plastic knives and forks. (“Ah, forgot your cutlery hey?” said the counter lady knowingly. At least we weren’t the first.)

One more task and we’d be set for our night. Putting together a BBQ–there’s a reason home improvement stores offer barbecue assembly for a small fee, it’s the stuff that ruins marriages. The only time Mike has hung up on me in many years together is the time I called him from work to ask if he’d gotten our new bbq put together yet. “No” came the terse answer, spit through clenched teeth.
“Why don’t you read the instructions?” was my ill-advised reply.
But the small grill we’d picked up for MoHope, dubbed an “RVQ” by those in the know, shouldn’t be too much trouble; after all, it had no legs, and was the size of two generous striploins and a pair of hot dogs. And while it ended up taking longer than the 32 seconds I thought it should have, I wisely kept my trap shut and the RVQ was assembled, and deployed, successfully with no further marriage rifts.

The RV park guy brought around firewood in short order, and for $10 we got enough to make S’mores all afternoon and well into the night. Not that we did, because the extremely dry weather conditions led us to believe that we likely would not be able to have a fire. Note to self: ALWAYS be packing S’mores.

As we were tucked in for the night, cozy and snuggled in MoHope’s bed, the rain started. A gentle rain, a soothing sound on MoHope’s roof and canopy. We drifted off to sleep, content in the knowledge that should a giant starving bear invade, there was a “softshell” (tent) nearby that would make a better and easier target (hey, we’re not outdoors-y types).

Next morning as pulled out, we got a better look at some of our neighbours. We really liked the Malahat Mountain RV park, and had zero issues. But here’s some pictorial evidence of why we called it the “RV Park That Time Forgot”.



We pulled back into the driveway after what must be deemed a successful first excursion with 85 miles on MoHope. Eighty five miles for the round trip including a bit of sightseeing. Eighty five miles away from home and reality, and it felt like a million.


Adjusting My Sails

“We can’t direct the wind, but we can adjust the sails”
-Thomas J. Monson

This quote has come my way quite a bit as of late. It might be a bit cheesy to some, after all it’s a pretty obvious statement. We can’t control everything that goes on around us, only ourselves and how we respond.

For me it’s not so cheesy, because I had a pretty profound experience of what happens when you don’t adjust your sails–literally.


In 1984, I was a teenaged Sea Cadet taking part in an international Tall Ships race, on the leg between Bermuda and Quebec City. As crew members on board the barquentine Our Svanen, we learned seamanship skills and lived like sailors in “olden times”. I got over a fear of heights pretty quick, as daily we were required to climb each mast and touch the top, and working in the rigging became second nature within days.

The Svanen, now Southern Swan, plies the waters of Sydney Harbour as a charter cruise.

The Svanen, now Southern Swan, plies the waters of Sydney Harbour as a charter cruise.

The flotilla of Tall Ships, escorted by HMCS Assiniboine, departed Hamilton on June 3. A stunningly beautiful day, there was just enough wind to allow every boat to depart under sail easily; we waved farewell to the pastel pinks and brilliant blues of Bermudan waters and headed off on our grand adventure.

That night, I was standing aft watch on deck. My job, for two hours, was to patrol the area behind the wheelhouse, watching over the sides and looking for anything unusual to report to the Watch Officer. For the first little while, I enjoyed the solitude. Being on the ocean under sail, with a mantel of stars overhead, puts your place in the universe in perspective.

And then the wind picked up, quickly. The stars vanished, and within minutes the waves began washing through the railings and onto the deck. The ship’s officers acted quickly, climbing into the rigging themselves to haul in sails (this was not a situation for trainees) and securing everything on deck. I was to stay in one place, at my post. It never occurred to me that we were in any danger, maybe the naïveté of youth, or the ignorance of the situation, but I know I wasn’t afraid. Wet and cold, but not afraid. I could hear the radio messages from the map room as each ship sent in their situation reports to our escort ship, the many languages of the international fleet translated into universal mariner’s lingo.

And then, cutting through all the noise, a piercing cry of “Mayday”. “Mayday, Mayday, Mayday” crackled the radio “This is Barq Marques, our location is—“ and nothing. For a split second, the radio was silent, then the chatter began as other ships tried to locate her, as the Assiniboine made her way towards the Marques’ last known coordinates, as the Polish tall ship found the ship, upside down.

The Marques

The Marques

The Marques, a barq out of the UK, was less than 1km from us when she capsized that night, taking 19 of her 28 crew with her.
The race to Halifax continued, and I don’t know that we understood the magnitude of the tragedy until we reached Halifax; I know we weren’t told of the loss of life, and I know I was asked to not repeat to any of my fellow cadets what I’d overheard on the radio that night.

Much later, there was an investigation on what had gone on, and why that ship had gone down and so very quickly. The consensus at the time was that there were several factors but the one reason we were told, and we left our time on Svanen believing, was that the Marques’ had too much sail on for the wind, and was unable to get her sails down quickly. The squalls filled the sails, flipped the boat, in minutes. No time to abandon ship, launch life rafts, or even get out from below decks.

And less than one kilometer away, the Svanen bobbed like a cork. The winds were so high that as the ship rolled into the waves, the top of the masts touched the water. But unable to grab anything, to take hold, those wind howled futilely through the masts, the boom, the spars, and we rode out the storm, battered and bruised but unbroken.

An account of the Marques tragedy can be found here