“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.
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.
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.
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