Perspective: Bed Lift

There’s now a long track running across our bedroom ceiling, over our bed. It’s where a very strong motor lives, and when we hook up a sling to a motor, I can get in and out of bed with no heavy lifting.
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We don’t need this piece of equipment just yet; we have quite a high bed and it’s easy for me to slide out of in the morning, but I do need help at night. So far, we manage quite well with Mike lifting my leg up and tipping me over in a move my Occupational Therapist Deanna calls “unorthodox”, but it works for us.
But because it has a sling with many straps and loops, and it has to be positioned just so, we needed some practice with it before we actually needed it.
Now, this bed lift means that there’s yet another thing I can’t do, another loss, another step closer to being, well, dead. But as I said in my previous “Perspective” posts, I don’t think of it as that. I think of it as another thing to make our lives easier, another way to save energy that I can use elsewhere.
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Besides, it’s fun! I enjoy the feeling of being suspended in the air; not only does it relieve pressure from my legs and butt (a note about that–a wide load does not make sitting most of the time easier, despite my belief that it would) so yeah, it relieves pressure, I can hoist myself up and down and there are controls on the motor itself (not just the remote), making hollow Mike’s threats of leaving me hanging up there, and I can just hang there quite comfortably (sling cradles my whole body) thinking about other things that dangle from high places. I can travel the world, imagining myself as an aye-aye in Madagascar, A Costa Rican sloth, or just a really content Vancouver Island raccoon.
It’s a magical sling, and I’m sticking to that.

What do you mean, it’s February?

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I can’t believe the last time I posted was early January, but I can’t say I don’t know where the time went. For the first time since diagnoses, I have been paralyzed with fear. Not general fear, but a very specific fear.

The one thing I’ve been able to do for a very long time is write. Write for entertainment, for deadlines, for catharsis, for processing, for enjoyment, for a million other reasons. My writing process has always been that of using the keyboard (or actual paper and pen, back in Olden Times).

I like the words spilling onto the page from my fingers to the screen. I don’t like dictation, never was interested in voice software. Assessing each sentence as it comes out, reviewing it, deleting it, or using it as fuel for the next sentence, like kindling to a bonfire, that’s what I like.

In September, I noticed that I was losing strength in my arms. Not a lot, but certainly noticeable. And then over Christmas, I felt those dreaded fasciculations (muscle twitches) right down to my fingers, signifying that the nerve axons weren’t firing properly, that the muscles weren’t getting the signals they should be to work properly.

I had started getting them in my face too, leading to fears that I would lose my ability to smile, which was frightening as I have “resting bitch face”, in that I look perpetually contrary if I’m not smiling. But they stopped and nothing more happened (so far).

This is different though. If I can’t make my fingers and arms work, I can’t type, and my voice will be silenced, and if I have no voice, how can I live? I can’t process things, I can’t communicate, I can’t be me. Writing is who I am. So that’s the fear I’ve been wrestling with. I have barely been able to respond to emails, I’ve stayed off Facebook for days on end, very little texting, and certainly no long form writing.

I sat at my laptop, fingers lined up ASDFJKL;, and could not bring myself to type. If I didn’t then I wouldn’t realize I couldn’t, I could still pretend, after all. No amount of meditation or medication could ease the fear. Add to that a particularly emotionally difficult January, and I just could not write. It became so that even opening email was an effort.

Today marks one year since I walked into the nearby health clinic, concerned about weakness in my thighs and expecting to be told it was middle age. The GP who saw me ruled out MS, said it was likely a spinal stenosis, and he’d schedule a consult with a neurologist “just in case”, and so it began.

And thinking about all I’ve overcome since those days, not the least of which was the fear of death itself, I managed to find a thread of nerve to sit here and start typing. it’s been almost an hour, and my fingers are still moving as quickly as ever, even though the words are not coming easily. I’ve been thinking of friends who have their own struggles.

Apologize for the poor quality of this post, I’m just pushing it out there to get back on the literary horse, so to speak. I need to write while I can. For Claire, promised chapter drafts of my book to entertain her through chemotherapy. For Lesley, a beautiful spirit so full of life I can’t believe she left us. And for me, because I still have much to say before my voice is quieted.

Still fearful, yes. But more afraid of not writing while I still can.

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Annus (and 1/2) Horribilis

So yeah, talk about understatement. The latter part of 2015, and all of 2016, were not good for our family. We lost both of our beloved Newfs and our cat, and of course there was my devastating diagnosis of ALS, all of which is making me believe we were terrible, terrible people in a former life. Maybe we were Genghis and Mrs. Khan or someone. I dunno.

On the one hand, I’m glad to see the end of 2016, yet on the other hand, not overly happy to ring in a New Year. You just can’t leave a terminal condition behind, it comes right along with you, sticking to your shoe like those little reminders that not everyone cleans up after themselves in a dog park.

But in spite of it all, there was some pretty darned good stuff that happened too.
My faith in humanity was restored, by gestures grand and seemingly small. Friends showed their true colours, and my husband and I navigated those first few months of complete and utter turmoil with our relationship intact. He is the reason I continue to fight to enjoy my life, however and for as long as I can. Sappy as that sounds, there’s a reason for it: I always joked that I married him for his pension, and now that he’s so close to getting it, there’s no way I’m not going to be around for at least some of it.

WARNING! CLICHES AHEAD! I found an inner core of strength I didn’t know I had, pulling me out of the dark days. I learned to live day to day, to practice mindfulness, and stop and smell the roses.
It’s about appreciating what I have, celebrating what I can do, and not dwelling on losses, past or future.

See the picture below? That geriatric stripper pole is my floor-to-ceiling lift-assist, decorated for Christmas like everything else, full of lights.
My resolve is to celebrate everything in 2017, be it that pole or (with some scientific advancement) an end to the reason for it. Or at least, cover it all with lights.

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In the meantime, good reader, I thank you with all my heart (which like The Grinch, has grown three sizes) for following along, and I’ll do my best to drag you through 2017 with honesty, humour, and love. ❤

The Meaning of Life, Sorta

The purpose of life is to discover your gift.
The work of life is to develop it.
The meaning of life is to give your gift away.
–David Viscott, American psychiatrist & author

After my last post, in which I mused about my purpose in life, my friend Regina sent along the above quote. It really resonated with me, and solidifies the idea that our purpose in life, our raison d’être, comes from within.

Like the young fella who helped create the Facebook and enjoys all the credit, Zuckerberg. If he hadn’t followed his inner voice and whipped up the social media network, I wouldn’t have that quote at hand because Regina and I, while great friends throughout high school and university, had lost contact over the years and just regained it via FB. And she’s the sort of friend that you never feel you really fell out of touch with, so thanks for understanding your life’s purpose, Mark Zuckerberg!

Now to get back to my life’s purpose. When I first found out I had ALS, I started thinking not about a “bucket list”, but rather, what I could leave behind. How I could touch people, give my life meaning.
And I realized that one thing I was good at was my real passion, writing.

Well, I was good at cooking too, hence my half dozen cookbooks which are available by searching “Feltham” under Cookbooks on Amazon.ca, not “Liz Feltham” because my first two were “Elizabeth Feltham” to please my mother-in-law, because she hated “Liz” and indeed all my family called my “Elizabeth” except one rebel sister-in-law, and my baby sister who called me “Ish” and then “Lizbit”, but I digress.

So I’ve picked up writing my dormant horror novel,Silvern Voices, the one about the hotel. I started it two years ago, and had returned to it somewhat lackadaisically, always thinking I’d have plenty of time to finish.

Signal Hill, NF, the site of "Silvern Voices"

Signal Hill, NF, the site of “Silvern Voices”


I’ve had ideas for other books, in fact, just the other day I was thinking about a book in which the main character is an author who has just contracted a terminal illness, but she can live as long as she’s actually writing the novel on which she’s working, and the novel stretches into tens of thousands of pages…but that’s a little meta.

For anyone searching for the meaning of life, I think it’s just as simple as Viscott’s quote. The hard part might be accepting that your gift is actually your gift, and that you’re worthy of it. That’s all I’m going to say about it, because I am determined not to be one of those people who becomes a meme by virtue of saying horridly cliched things about making the most of your life blah blah blah. That’s up to each person to do, not me. I’m no more wiser now that I was six months ago, and not that wise to start with. So yeah, you go find your gift and share it.

As for me, I’ll keep plugging away at my Silvern Voices.
After all, I always did write better under a tight deadline.

O Christmas Tree

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See that huge tree on the right? Hanging over the walkway? Kind of looks like a sorry pine to me, but tree id isn’t my strong suit. It has strange looking cones that resemble upside down wasp nests. And the needles seem to grow blue then turn silver. Even during heavy rain, the branches are so thick there’s a dry spot on the walkway underneath them, one in which I had often stood, comforted by its ability to keep me dry.

I hadn’t really given much thought to its origins, assuming it was a fortuitously placed wild tree, until by chance, a landscaper-type guy was visiting the house, and I asked if he knew what this tree might be.

Turns out it’s something called Deodara Kashmir, a type of cedar. Although to me, Deodara Kashmir could be the star of a Bollywood musical, who falls in love with the local playboy Garry Oaks, but their cultural differences and his cad-like ways are destined to keep them apart.

The other interesting thing is that it’s not a species native to British Columbia. So, someone had to make the decision to buy this from a nursery and plant it here, in this little plot of land, which already is jammed with trees. Which got me thinking “Why here?”

It’s certainly a beautiful tree–or at least would be so had it been shaped properly (so the landscaper said), very much resembling a large Christmas tree with its pyramid shape. The trees here are huge, much too high to decorate, and the Garry Oaks in front of the house that serve as a windbreak are stunted and gnarled by the sea winds. So if one were looking for an outdoor tree to decorate, one could do worse than to plant this exotic creature.

And that theory is shored up by the presence of Christmas lights in the branches. I don’t know how long they’ve been there, but only two of them work, and the cord snakes almost underground now from the tree to the electrical outlet, covered by the detritus of years of shifting soil and grasses. Remember the old coloured Christmas tree lights? The ones that were really plain white but had colour painted on them? My parents had them on our tree when we were younger. Well, these lights are probably only a generation or two newer than those.

The tree is much too tall now to replace those lights, even with a long ladder. The narrow walkway is on one side, and the tree itself balances on the edge of a drop-off into the lower part of the garden, right over a deer path.

But even though it doesn’t light up anymore, it’s nice to look out the kitchen window at it, and wonder about the people who planted it, and how they lit it up, and wonder if they, or likely their children, remember that tree. Was it exciting to see it lit up for the first time in the winter? Did they use it as a beacon for Santa? Was it lighted long after Christmas to cheer up the heavy grey of the winter sky?

Even though the lights don’t work, there’s still a lot to see in that tree. Right underneath there’s a wild blackberry bush, and just before the berries ripen, the deer come out to nip them off. I hang a woodpecker suet feeder there, where Downy’s and flickers feast, and squirrels try their damnedest but despite superior acrobatics just cannot crack that feeder. There’s a big mesh honeybee that holds sunflower seeds, so plenty of songbirds avail themselves of that. Right now, there’s a particularly belligerent ruby-throated hummingbird who uses it as a watchtower, to guard “his” feeder that hangs on the kitchen bridge.

I kinda feel like that tree some days. Not that I’m exotically named or provide housing for birds, though my hair could be aptly described as a bird’s nest most mornings. Just that my bulbs are blowing out, but I am still determined to give my life purpose. Even if that purpose is to give you a gift of strained metaphors on Christmas Day.

And to all, a good night.

“A thrill of hope, the weary world rejoices
For yonder breaks a new and glorious morn”

Christmas Wish List

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Christmas is all about snow, and I was missing snow earlier this month. If only, I thought, if only I could see snow again!

Then it snowed in Victoria, enough to blanket the ground for a couple of days. Well, maybe not a big warm blanket, maybe a sheet. No, wait, that would be a sheet of ice. Why is snow a blanket and ice a sheet? What’s a pillow? Are all these references to bedding because you use more of it in the winter?

I digress. I wished I could see snow again, and it came.
If someone is taking requests, I have just one more thing to ask…