Perspective: Bath Lift

bath-seat When I first began speaking with an occupational therapist about what sort of equipment I might need as my condition progressed, I was very stubborn, and resistant to all her recommendations.

Obviously, if I needed these things, then I was really sick, and I’d have to accept that.
I realized that logic was like saying “If I don’t buy Advil, I’ll never get a headache”, and gradually started to welcome these various mobility and life assists.

Now I see them as a way to make mine, and Mike’s, life easier, more enjoyable, and a way to reserve my energy for the things I want to do. And sometimes, just sometimes, they can be like a magic carpet, taking me anywhere I want to go.

Nonet doubled: Transported

Sliding carefully, chair to bath seat.
Clumsily, I swing atrophied
legs over tub side, failing
balance threatens a dunk.
Positioned safely,
my eyes close and
I perch, sigh…
remote
still

there.
My legs
at dock’s edge
splash lazily,
easily. Leaning
back, the sun’s warmth comforts,
Across the lake, deer drink, but
I must go before bath cools down.
It’s okay. The lake is always there.

Good friend, bad taste, ugly socks. No, really, I love both her and her socks.

Good friend, bad taste, ugly socks. No, really, I love both her and her socks.

“Don’t be alarmed if friends begin to distance themselves from you. This is a sad, but common, side effect of a terminal illness diagnoses.”

That was just one of the uplifting pieces of advice dispensed by the “Living With ALS” handbook, the one you get when you least need to hear that kind of information, much like rubbing the salt of reality in the gaping wound of such a diagnosis.

And so I was on guard, waiting for friends to wander off, drift away, find excuses not to keep in touch, all those terrible things. Not that I have a large circle of close friends, although it has expanded exponentially on this coast for some reason, likely as I am no longer working in the hospitality industry and I’ve shed the cloak of bitterness carried over the years of dealing with the public. Not that I’m still sour or anything.

Where was I…oh, yes. The reaction of friends.

The Good
Well, I have been, as I have written about before, completely blown away by the amazing, incredible, instant support of the vast majority of friends old and new. I really, truly, could not ask for a better network. I can’t even begin to list all that’s been done for me, for fear of leaving someone out. The generous and kind gestures, from the grand to the seemingly small, I hold them all in my heart.

And this groundswell of support has changed me in ways I would never have expected. Over the past couple of months, we have had a string of visitors, friends from far and wide (not including family) who visited for the day or a couple of weeks (MoHope makes a great guest suite). While delighted to welcome all my visitors, I had some concerns about how I would hold up. Not physically, I knew I’d be tired, but mentally. An introvert, I need time alone to recharge, to rest, and space to myself.

Much to my surprise, I wasn’t tired at all. I had more energy, physically, than I had before the visits began, and more astoundingly, to me anyway, was how I felt mentally. Instead of being exhausted, looking for time to myself, I found myself buoyed by the company. It may sound silly, but I felt as though my emotional bank had been filled. And given how much that account has been drained over the past few months, that was a most wonderful gift.

The Bad
I’ll define “bad” as being those who’ve drifted away, as per the dire warnings in the book, or acted badly out of malice or unkindness. I got nothin’ for this section. I had one online friend who wrote “I’m not sure how to talk to you anymore”, to which I replied “same as always”, and that was the extent of it, all seems well.

There was the person who contacted me after she’d heard me on the radio talking about my diagnosis, an acquaintance from much younger years, someone I’d forgotten about. She’d reached out to express her shock, and to compliment my writing. Although I was reminded of some of the “mean girl” things she’d said to me, clearly she did not remember our prior relationship the same way I did; I thought of asking her why she felt the need to connect, but decided I didn’t really want to know. I sent her a polite email and that was it. It didn’t affect me enough to classify as bad or ugly, and I present it only as a curiosity.

Will things change as my condition worsens? Possibly. Maybe I will become more reclusive myself, I don’t know. But for right now, which is all I can be concerned with, there’s no bad.

The Ugly
Now here’s where things get interesting. “Ugly”, to separate it from “Bad”, is when I think the behaviour of someone is not acceptable, although driven by something other than malice, unkindness, meanness.

It’s a difficult thing, to cut a friend from your life, even a new friend. That high school girl insecurity of maintaining friendship at all cost, no matter how they treat you, because you’re lucky just to have a friend, that feeling bubbles up in me. Over the years, I’ve cut off very few people deliberately, and in both cases because the person had completely different values than mine over the way friends should be treated or talked about. The most recent one was a passive-aggressive drama queen who liked to feed her low self-esteem by standing on the backs of her “friends”, who sought to create alliances with mutual friends by using fabrications and exaggerations, and when called out on such behaviour, stuck her head in the sand and denied it all. That’s not the kind of friend anyone needs. I would have stuck her in the “Bad” category but I cut that cord while I was healthy.

Which brings me to the Ugly. Let’s call her Annie. I became friends with Annie soon after moving out here; I enjoyed her company and we got along well. Annie had some characteristics I didn’t care for, but as my interactions with her generally didn’t involve these characteristics, I set them aside.

Then I got sick. And Annie went from being a friend to an alarmingly possessive person who sought to make my illness all about her. It was quite unsettling. My very first time seeing Annie in person post-news, she talked about unusual things: our stair railing would never support a wheelchair lift (at this point I was still walking unassisted), and more inappropriately, assisted dying. Yes, I was processing this news, and she was already talking about death.

A few other choice interactions: upon publishing my first blog post about my ALS, I guested on a radio talk show from Halifax, commenting about the new right-to-die legislation. Annie emailed me a scathing missive, lambasting me and full of questions about how could I possibly write about this, and talk about this, instead of talking to her? Again, odd.
My true friends understand that I process through writing, and were nothing but supportive.

When other friends started the group for our ALS walk, Annie was on the attack again, calling them short-sighted, among other things. I quickly let her know that WE appreciated them doing that, and I wouldn’t hear any criticism of it.

Things went rapidly downhill from there, with every one of Annie’s emails or texts starting with “Me, me, me”. How she felt. How my actions affected her. Always promising to respect my wishes for space but never giving it. How she didn’t quite trust my husband to be a good advocate for me, to care for me properly. There was so much more, which I’ll spare the details of.

Finally, I’d had enough. I realized that any time I thought about or heard from Annie, I was getting sick to my stomach and having anxiety symptoms. She sent yet another message that made it clear she had no interest in my feelings, and I responded by letting her know exactly what the issue was. I stopped responding to her, and heard nothing for weeks.

Then, she unfriended me on Facebook and then asked why I had unfriended her. It was like interacting with a sulky teenager who was acting out because I had dared to become ill and cause her such misery, all under the guise of claiming only to want to be a supportive friend.
Annie, that’s not what real friends do.

I’ve become selfish, in a way. Not with regards to giving, or caring, but as to whom I spend my time with. Life is too short, especially now. I chose to surround myself with people who are like-minded, who make me laugh, who bring me joy. People I admire, respect, and appreciate. Those who put up with my shortcomings and limitations. Those friends who fill my emotional bank, not drain it dry. May you all have the strength to do the same.

“Friends show their love in times of trouble, not happiness”-Euripides

Crises Friendships: The Good, the Bad, and the Ugly

Nonet: Up

eagle

To the kitchen I wheeled, listless and
emotionally sandbagged. I
looked through glass, and was gifted
this eagle soaring, lost
feathers be damned. I
was uplifted,
as though his
wings were
mine.

*A nonet is a nine line poem in which the first line contains nine syllables, the second line eight syllables, and so on down the last line of one syllable. It’s one of my favourite poetic forms.

Perspective

With major life changes come shifts in perspective; since my diagnosis I’ve had many such shifts, some as tumultuous as the shift of a tectonic plate, others less so.

Like this morning’s change of perspective. Using a wheelchair, still somewhat new to me, has changed my actual physical perspective, lowering my eye level. If it hadn’t, I wouldn’t have been at the proper angle to see my fruit bowls, not just as some green and yellow bananas, but thusly:

img_7890

The senior DelMontes crept over the Range of Orange to catch of glimpse of the rival Chiquitas, whose youth they couldn’t help but find appealing–but could never let that slip if they wanted to be Top Banana.

Sometimes a change of perspective is a good thing.🙂

Campground Confidential: Peeping Liz

Campground neighbours are like Forrest Gump’s box of chocolates: you never know what you’re gonna get.

This, to me, is a big part of the appeal of RV’ing. I think people watching is an endlessly fascinating activity. It is difficult for me to get in and out of MoHope, or to help with the setup and teardown at all, but quite easy to eyeball the neighbours, surreptitiously peering out MoHope’s windows to take stock.

And so earlier this summer, as Mike settled MoHope in place, hooking up lines and putting out the canopy and such, I checked out the neighbours.

First, the left side. She was in her late 60’s- early 70’s, rocking a floral strapless jumpsuit, cat’s-eye glasses and a Brigitte Bardot circa 1960 hairdo. Under the trailer canopy, she read a book and occasionally sipped from a cup that rested on a small table next to her. The table was decorated with a cloth and vase of fresh flowers, quite civilized.

He emerged shortly thereafter, swept the carpet that covered as much ground as the canopy shaded, and brought out a guitar to rest on their picnic table seat. I was quite taken with his hair–a thick thatch of pure white.
Not likely any issues with these good folks, thought I. They seemed content in their time travel portal, and so I turned my attention to the other side of our rig.

Before.

Before.

To the right of us, a vintage VW camper pulled up. A middle-aged couple emerged, speaking French (the European kind, not French Canadian). This couple appeared to be too much into each other to be concerned about any neighbours. They snuggled, held hands as they walked, and retired early to bed. Adorable, I thought, perhaps a second honeymoon.

Further right, a car arrived, spewed out a dubious pair who whipped up a tent, lit their small barbecue and started to cook wieners. I say dubious, as she was seen only peering out of the tent through a haze of suspicious fog whilst he sported that classiest of male attire, the muscle shirt. Chest hair ran wild above the shirt’s misshapen neck, his belly button making a break for freedom in the space where the undershirt ended and the sweatpants started. There’s camping casual, and then there’s this guy.

Next thing, Mike was staring out the window, past the honeymooners and onto the soft shells (tenters). Look Lizzy, he whispered, transfixed. I peered over to see that Muscle Shirt had finished cooking hot dogs and was scarfing them down as quickly as they came off the grill. It was indeed impressive, and my earlier derision melted as an appreciation for his enjoyment of his food, so reminiscent of Newfoundland dog puppies, took its place. Slow clap.

Looking back to the time travel portal, I noticed for the first time a plastic pink flamingo, solar light embedded in the crook of his leg, separating us and them. A nice touch, I thought. Perhaps not a solar light at all, but maybe how they would beam back to their youth when they were done camping? I didn’t think about that for long though, as I noticed the picnic table was set, and in quite the style. There were heavy candle holders set on each end (practically, as these would also hold down the cloth), silverware, crystal wineglasses and china, a basket with napkins (cloth, I’m sure), and a silver wine bucket. I noted the four place settings, sure enough another pair joined them, a younger couple–perhaps one of their children and spouse?

How delightful! They sat at the table, the host barbecued, the hostess poured wine, and it looked they were in for a wonderfully civilized evening. Not so on the other side, where Muscle Shirt was joined by several carloads of friends. The cars that make really loud noises, via bass-heavy stereos or exhaust systems that sounded like V8 engines under the hood.

These guests, unlike the sedate neighbours to the left, poured out of the cars with much yelling and high-fiving and yo-bro-ing, carrying cases of beer and an air of mayhem. Could be a long night. (Although the campground had quiet hours after 11, we are not the snitchy sort to call and tattle.)

By 8pm, we were settled into MoHope playing Battleship. Due to our dry summer, there was a fire ban in place, and it had started to cool down, with the forecast calling for high winds. The second-honeymooners were long secured in their van, and the clinking glasses and lively conversation to the left said the dinner party was in full swing. We wondered when the guitar playing would start, not overly concerned about noise. I could imagine what was on the playlist-a little Peter, Paul and Mary, perhaps, or some early Johnny Cash if they veered more toward country. Muscle Shirt’s party was still going on, but not as raucously as we expected.

Just before 9pm, we heard the party cars revving up, the noise level increased exponentially, and then suddenly POOF! The soft shells’ guests were all gone, and Muscle Shirt and the missus were zipped into their tent, snug as the proverbial bugs, with not a peep to come from that side for the rest of the night. Not so much as a can remained, not a trace. Now that’ll teach us for judging books by covers, won’t it?

But that wasn’t to be our last such lesson of the night, because that lovely dinner party on the left? No more dinner, all party. The talking grew louder, and louder, and a woman started laughing-nay, braying, at some uproarious tidbits someone was feeding her. Then the guitar playing started, and it was not at all what we predicted. No John Denver or Jim Croce for these folks, no sir, nope.

dun dun dun, dun dun DU dun…yup. The unmistakable opening chords of Deep Purple’s Smoke on the Water.

And with that, the sound amped up. Guitar, playing just a few chords of a vast repertoire of songs, all of which sounded increasingly worse as the hours dragged on. The whooping was as loud as the departure of the soft shell guests, and that horrendous, cackling, shrill, ear-splitting bray pierced the air at intermittent intervals.

We, who had been lulled into a false sense of security by appearances; we, who thought we might drift to sleep to the sound of quiet conversation and guitar strumming to the left of us; we were awake until 1am, long after quiet hour and long after our last nerves had been danced upon. Finally we fell asleep from the sheer exhaustion of trying to be understanding of neighbours who just wanted a little campground fun. It helped that the wind picked up, blowing much of the noise in the other direction.

Next morning, all was quiet. We raised the blinds and surveyed the scene next door. The canopy had fallen down, the support poles laying askew on the ground. The bedraggled picnic tablecloth hung by a corner, the fine china, glasses and flatware long gone. Wine bottles and beer cans were strewn willy-nilly around their camper. The only thing left standing was the flamingo.

I surveyed the scene, laughing (not at them, at ourselves for our hasty, clearly wrong, judgement). Then I spotted the host through the window of their camper. One hand on his head, the enviable thick white hair now stuck on end; the other hand with a death grip on a coffee mug. Looking ever so much like a hungover Einstein, he surveyed what was left of his little kingdom.

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He looked up, and I unwittingly caught his eye. He shook his head balefully. Raising my own tea mug to him, I smiled sympathetically, as if to say “Been there, friend, done that”, all trace of last night’s irritation vanishing at his befuddled look.

Lesson learned. I look forward to the next box of chocolates.

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.

#believe

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.