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.

The Interview

I’m very, very glad I took the whole day off. Social anxiety is exhausting!

The reporter was scheduled to come at 9. Shana, the Assistive Technology Services Coordinator for my local chapter of ALSA, showed up early so we could devise our battle plan. I really like Shana – she’s good people. We met for lunch Tuesday, and I liked her instantly. The reporter ended up being late, due to “breaking news” (there was an officer involved shooting that morning), so we just hung out for awhile while my nephew’s cat Brobee whored himself alllllllllllllllll over her. Seriously, that cat is ridiculous. Luckily, Shana is also cat owned, so she was nice about it.

The reporter and Camera Guy Pete arrived around 9:30, and they…were both really nice people, actually. I was kind of expecting someone plasticky and false, but she was very nice, and won me over when she not only said hi to Brobee, but pulled up a picture of HER cat on her phone. Cats. They bring people together. Hehe. They set up the camera at my dining table, and then the interview was…very quick and informal and I hope to GOD I was half articulate. She asked how old I was, when I was diagnosed, and was surprised when I said just this last April. She asked several questions about voice banking, and I hope I came across as passionate and not stupidnerdy about the whole thing. And then she asked how ALS has affected me so far, because she’s not seeing it.

“Well there’s these,” I said, swinging my legs around. I wore a knee length skirt that morning, with purple houndstooth knee socks, so the braces were not in your face, but not hidden either.

“Oh, I didn’t even realize that’s what they were. I thought maybe they were..a goth thing?” hahahhaha what.

“Well I’m going to replace the velcro with leather, so it will seem even more intentional then, ” I told her.

They interviewed Shana on my couch, next, and she was very passionate and bubbly and full of hope and information. Awesome. They filmed me walking up the stairs, and then we set up in my office. Shana sat next to me while I did the thing, and I showed them around the very simple ModelTalker software. I recorded a couple of simple phrases, demonstrating how I could play it back. Marilyn (by the way, the reporter’s name is Marilyn. Probably shoulda said. It’s the same name as my mom, so that was weird.) asked me about banking custom phrases, and Shana explained that’s not really ModelTalker, that’s just something separate that you can do; make a recording of your own phrases and then put them along with the Artificial You on your soundboard so you can just hit a button to say “WORD UP HOME SKILLETS” or whatever. She asked if I could do some of that, so I pulled up Adobe Audition and recorded “Seriously? …SERIOUSLY.” for her, and played it back, and showed how I could crop the file to just include the phrase. She asked me to record “I love you” so I did that, and then, with Shana’s giggling prompting, I recorded, “You are getting on what might actually be my last nerve.”

It was glorious.

And then I looked over at my doorway and the reporter was stifling a laugh so I felt a lot better about the whole thing.

Pete filmed me walking down the stairs, and then filmed me in my kitchen pretending to bake something. Well I was actually baking, but mostly it was waiting for eggs to become meringue for macarons. (Which didn’t even turn out in the end because I was super distracted and not doing it properly, but they still tasted okay.) They packed up, then, and all said their goodbyes and headed off to talk to the other woman involved in this story, who is much further along her progression and uses ModelTalker. She’s apparently on a vent, so the idea of us all meeting at my house was laughable.

It was around 11 then, so I played around with Sims3 for about an hour and then took a nap for four.

Overall, I think it went okay. Hopefully I was semi-articulate, and was able to convey some of the awesome energy I feel about the ModelTalker option. BECAUSE VOICE BANKING IS AMAZING. They assured me I did alright. Marilyn said that the story isn’t likely to run next week, but the week after; but she’d email us to tell us when.

And when I know, I’ll let YOU know.

We can make her better. Stronger. Faster.

Ottobocks: more than meets the eyes!
New AFOs for Vashti!

I got my braces today! These AFOs (ankle/foot orthotics) make walking SO SO SO much easier. All the fashionable Wicked Witches of the East are wearing them this year. I’m going to make leather straps for them, though, because the crunchy crunch of the Velcro is I walk is driving me nuts.