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…

Perspective: Toilet Humour

After my last post, I received some lovely comments about how I was handling adversity with grace and dignity and such–which is all quite nice, and much appreciated, but clearly these folks didn’t see me this morning trying to dress myself and putting both legs into one leg of my pyjama pants (which are, by the way, perfectly acceptable for day wear when you’re lounging around the house and not going out in public. Okay, maybe Walmart. Provided you top them with a sweatshirt with sparkly kittens on it.)

And so, in the interest of presenting a balanced view, let me share what happened a couple of nights ago. True story.

commode

Another one of the contraptions that I have that makes life easier is a bedside commode. I can get up in the middle of the night (which I, as a menopausal woman with a small bladder, am wont to do), slide out of bed, and do my business quickly and easily.
Relatively easily.

On this night, I sat down only to realize that the seat was up. Now, this is not nearly as bad, say, as realizing the bucket part hadn’t been replaced and I’d peed all over the carpet (acceptable for puppies but not me, yet).

So, I’m sitting down on the bucket rim and realized that a vacuum of sorts has been created and firmly securing butt to bucket. I tried standing up, but the bucket was holding fast. I wiggled a bit, but that sucker was not coming loose. I can only lift myself up from the commode using both arms on the handles for balance, so didn’t have a free hand for assistance.

I wriggled a bit more (nope, I hadn’t peed yet, if you’re wondering), shifting back and forth and side to side with some geriatric washroom hip hop moves (geriatric hip-hop, Madonna is making it popular in all the trendy New York dance clubs). As much I shook, shook, shook, that booty, there was no way I could dislodge that butt bucket.

Left with no way out, I had to wake Mike up for assistance. I pointed out that hey, reality and rap stars everywhere were paying big bucks for butt implants, and I’d gotten mine augmented for nothing more than forgetting to put the seat down. In spite of it all, we were laughing, and in short order I was sprung from my trap.

There really is humour in everything, even when it seems like life is going down the toilet.
But you can be sure I check that the seat is down.

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.

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

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