Support Structures

I never got to meet the other woman involved with the voice banking story; she’s much further along in her progression than I am, and it’s really hard for her to get around, so they did her segment at her house. She sent me an email yesterday, expressing regret that we didn’t meet. She asked if I had been to a support group yet, and told me “It can be a bit scary at first but you soon forget all that and come to enjoy the great people.”

Scary, maybe. Intimidating as all FUCK, certainly. I’m an introvert, I have social anxiety, I…don’t do well in crowds. Outwardly, I’m just fine. Inwardly, my mind is racing “oh shit oh shit she’s going to come talk to us oh shit shit shit what do I even SAY oh shit here she comes she’s asking our name WHAT DO WE TELL HER oh right our name that’s easy. Ask hers. ASK HERS. CASUAL. FUCK. WE ARE NEVER GOING TO REMEMBER THAT. I hope we never meet her again even though she seems nice because we won’t remember her name and it will be HUMILIATING and OH SHIT SHIT SHIT SHE IS ASKING ABOUT SOMETHING. WHAT IS IT. DO I HAVE KIDS. OH SHIT. WHAT’S THE POLITE WAY TO SAY FUCK NO NEVER NOT IN A MILLION YEARS YOU MUST BE JOKING? “I have cats and that’s close enough for me”? Really brain? That’s the best you could co..oh she’s laughing. GOOD JOB BRAIN HIGH FIVE. Oh but what if she’s laughing AT US. OH GOD WHAT TIME CAN WE LEAVE HOW LONG HAVE WE BEEN HERE oh five minutes, that’s all? Shit. Shit shit shit.”

All social interactions are scary to me. With strangers, exponentially so.

Though, I admit I do have some fears about going to support group. I know it’s going to be a harsh reality check to see people in advanced stages of my disease. I’m not sure I’m ready to be confronted with that. I already have a little bit of the “huh, that’s what the future looks like” when I see people in wheelchairs. Mostly that’s fascination, though. But my real fear is that the support group is going to be like the ALS forums.


The fucking NEGATIVITY and SELF PITY and ENTITLEMENT. “ALS IS THE WORST THING EVER AND MY LIFE IS SHIT AND NO ONE UNDERSTANDS AND EVERYTHING IS TERRIBLE AND HOW DARE YOU HAVE FUN AT ALL WHEN I AM DYING SLOWLY YOU SELFISH FUCKERS.” And then there’s the constant “We lost a member today! RIP Twitchy Twitchertons, who lost his battle with ALS today.” Negativity and Mortality! Two great tastes that taste great together! YOU GOT YOUR OBITUARY IN MY COMPLAINT! YOU GOT YOUR SELF PITY IN MY FUNERAL ANNOUNCEMENT! *slow camera pan as they both realize that they can be miserable..TOGETHER! Fade out as they live happily ever afte….oh who am I kidding. They die alone after alienating everyone they ever knew* And scene. Print it.

I’m terrified that support groups are going to be live action reenactments of all that. Because my social anxiety would never let me stand up and say “SHUT THE FUCK UP, SALLY, LIFE IS REALLY NOT THAT BAD.” “Yes, Don, you’re DYING. So is EVERYONE ELSE EVERYWHERE. You are not a unique snowflake and your terminal disease is NOT licence to be a FUCKING DICK.”

…I’m so gonna print that on a bumper sticker.

Well, at least I won’t have to deal with the “Sometimes? I get tired. And my leg fell asleep yesterday. Does this mean I have ALS?” people. “NO SRSFACE GUISE I AM NOT AS STRONG AS I USED TO BE I THINK I GOT LOU GEHRIGSES.” You’re seventy. Yes. You’re probably weaker than you used to be. IT IS CALLED AGING. It, too, is terminal, but it doesn’t have its own nonprofit. But I’m pretty sure there are support groups. They CALL it bingo night, but let’s be honest, that’s not what it’s for.

I’ll probably go and check one out, though. I’ll be brave. And hopefully I won’t have to deal with my OTHER fear, which is me sauntering in there with my leg braces and the others being all “PFFT, BRACES-GIRL, COME BACK WHEN YOU’RE DEALING WITH THE REAL SHIT.” even though I KNOW that’s completely irrational. There’s no DME exchange rate on entrance into the ALS Club. You must be THIS bogged down in medical equipment to go on this ride.

Support is important, though. As is advice, from people who have fought on the front lines, so to speak. The woman who wrote me that email suggested that I get a signature stamp made sooner than later – and I don’t know that it occurred to me yet, that I’m going to need such a thing. I bet there’s all kinds of amazing tricks to this shit, resources I don’t know about yet, that other people can give me. And maybe, when my bouncy happy freaklet self waltzes in there, maybe I can give them a breath of fresh air by NOT being one of the Forum People.

Because my second circle has strict orders to put me down, if that happens. Occasional lapses into self pity are fine, but if I become all about “WHY ME” all the time and “I HAVE IT WORST OUT OF EVERYONE ALIVE” then ….Old Yeller style, out back behind the barn. Ka-blam. I will NOT become that person. There’s enough of those assholes already, and they’re all on the forums.

2 thoughts on “Support Structures

  1. These are all very, very valid fears. Especially when you’ve had social anxiety your entire life. I’ve thought all these same things whenever I wanted to join any group at all, even just walking into a bar that is already occupied by a group of regulars. It goes to our nomadic days when we were scared of other clans or tribes or whatever. But the thing is – all the people who are in that group have been the new person before, too. They all were scared of the same things. Am I sick enough to fit in? What do I say, what do I do? And just think to yourself this, “What would MY reaction be in their position?” Would you judge someone based on how much damage they already have? Or would you turn on that ol’ Vashti Charm and welcome them, listen to their concerns, and offer advice? It’s a rare diagnosis and I think you could use a bit of like-minded companionship. These are probably the only people who won’t look at you with pity. They won’t be sitting on the outside looking in and wonder how they could possibly relate. I say go for it, give it a shot, see how you like it. At least you know the people there actually HAVE this disease and aren’t looking for an internet based, unprofessional diagnosis.

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