Category: DME

The Walk to Defeat ALS

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Overwhelmed. In the BEST of ways.

I’ve gone on and on before about how grateful I am for the support I’ve gotten, how much I appreciate the support I’ve been given, how blown away at the love I’ve been shown. It’s probably become a little bit tiresome.

Well, suck it. There’s a lot more coming.

I admit I totally got press-ganged into doing the Walk in the first place. The Veterans Resource Group had a table in the cafe at work. I stopped by to chat, and met another person who ALSO had ALS for the first time. (I’ve met a fair few since then. We’re a small crew, but we run – or hobble or ride – in the same circles.) Part of the table’s purpose, besides awareness, was to recruit people for the Walk to Defeat ALS. “You should form a team,” I was told. “I bet you’d get a lot of support.”

I was of two opinions on that. On the one hand, it’s asking for something. I’m not good at that. On the other hand, a tiny irrational fear, ‘what if I form a team and no one shows up?’ While I was debating this in my head, a coworker walked up to the table to see what I was up to.

“Vashti’s making a walk team, do you want to join her?”

He looked at me, “You are?”

“I…uh. Apparently!”

And that’s how it started. I put up a poster outside my cube, I wore the red wristband, I talked openly and honestly about the diagnosis when I was asked, but I felt really weird about asking my friends to come over in support of me. I caved and asked my friends to help me name the team at least. We had a lot of really good suggestions, but in the end, The Godzilla Squad won out. On the 16th, I posted my team link.

On the 17th of August – the next DAY, for those of you playing at home – I was at 17 members and over $1000 raised.

To say I was overwhelmed is a gross understatement. So, fun fact! I’d never cried for joy before. I always thought it would be kind of cool if something like that happened to me, but I am not sentimental in the right ways, I guess, so it never happened. Until then.

The Ice Bucket Challenge gained serious momentum, and so did my team. On the 26th, I was at $3k and 26 people. A dear friend of mine in Sacramento also started a team in my name, Team Dinsdale. We met online waaaaaaaaaayyyyyyyy back in the day, before the Internet was a thing, when you had to dial directly in to someone’s computer and leave messages on a digital bulletin board. In the BBS days, my first handle was Dinsdale.

Life continued its usual frantic pace, there was a lot happening, and before I knew it, it was the final weekend. I had four people staying at my house to attend, and one flew in from Sacramento to be here for me. I was spoiled absolutely ROTTEN that weekend, with homemade Ethiopian food of amazingness, fancyface ice cream and donuts for dessert, and the best company a girl could ever ask for.

And then, Walk Day. This is my team:

Because ALS isn't going to stomp itself out.
Because ALS isn’t going to stomp itself out.

Amazing people, every one.

We gathered in a spot that was strategic and awesome until the live band started playing. Right. Bloody. There. But we were VERY easily distinguishable in the crowd with the hoodies (OMG SO AMAZING LEENDAH I LOVE YOU) and Danielle, my main babe, had printed out the kitten-vs-Godzilla picture I’d been using for my Walk page, and attached them to an umbrella. And Matt. Oh my golly Matt. He had commissioned a mighty cape of DOOM and a head cover for his staff:

Matt the Majestic

IS THAT NOT AWESOME.

Yes of course it is, don’t even bother answering.

There were a LOT of people there. Oh my god so many. I’m really glad I had my team around me so I was constantly distracted by OH MY GOD HI I HAVEN’T SEEN YOU IN FOREVER instead of ..holy crap I am in the biggest of big crowds and this sucks. We borrowed wheelchairs,Danielle and I, because I can walk a mile, but it sucks, and I think three is out of the question. Danielle had to borrow one because her foot is borked and it hurts her a lot to be on her feet at ALL and walking three miles is similarly out of the question.

It was a FANTASTIC walk. Well. Roll. I got pushed. The chair was surprisingly easy to wheel myself around in, but I had a lot of people willing to help me out. There’d been cold and rain suddenly, but it cleared up in time to be LOVELY for the walk day. Even a little too warm to wear the hoodies all day, for they were made of fleece and are SO COMFY AND WARM but maybe not the best when standing for a while in direct sunlight. Megan was the smart one, she held the umbrella. Some surprise faces showed up – I didn’t expect my older brother there, he told me he had to work but then didn’t have to! – and met a couple new friend-of-friend faces and did not at ALL have time to introduce everybody to everybody. We walked a really pleasant stroll along the waterfront, and groups connected and drifted as we walked.

We finished, exultant, and some of us stayed for a picnic, and some of us had to get back on the road.

I am so. so. so incredibly grateful. I am grateful to everyone who came. Everyone who couldn’t come but donated. Everyone who couldn’t come OR donate, but thought about me.

In the end, my team was 49 members strong, more than 35 of whom showed up to walk, and $5460 raised.

I’ve always strived to be the kind of person someone would care deeply about, and like having around. I …I guess I managed that, if the support and love I’ve been shown is ANY kind of indicator.

I love you all. You’re amazing and the world is lucky to have you in it.

Let’s Get Clinical! Clinical!

tragerstreit3 Comments

Clinic.

When I was a kid, and my parents spoke of taking me to the clinic for one reason or another, my child brain heard “clink” instead. I had once heard of being in jail being called “thrown in the clink”, so my kidbrain thought my parents were taking me to jail, just because I didn’t feel good.

The concept of Clinic Day can sound a little bit like jail too. Five hours and a host of doctors and experts cycling through in a dizzying whirlwind. I attended my first one yesterday, which was primarily to get me introduced to the people who will be working with me to keep me alive and functioning as long as possible. I was warned it was long, it was overwhelming. My appointment was scheduled from 12 noon to 5PM. The long haul.

I showed up with Danielle and my older brother Gecko. They’ll be the primary caretakers of my health and my (so-called) estate, so it was important for them to know what to expect in the days to come. The practical upshot of this was that we were our own peanut gallery and amused ourselves through the day with HIGHLY inappropriate jokes. Which would have been even worse, only Lance from ALSA asked if I’d mind someone sitting in on my clinic – she’s just started her job with ALSA and wanted to know what the clinic experience was like. I said okay, since I knew there was nothing really major happening with me, and we tried our best to rein in the Your Mom jokes and gallows humor. Which is the best humor.

We didn’t always succeed, but she was a good sport.

The first appointment was with an occupational therapist and a physical therapist. Tag team! The OT was there to judge my hand strength and to see what kinds of things I can be doing differently to conserve my energy. She didn’t like that I carry my laundry up the stairs, and suggested a duffel bag that I can fill and kick downstairs, and then haul up by a rope or something once I’ve walked up the stairs. She also suggested a rolling cart for my kitchen, sitting down whenever I can, that sort of thing. She measured my grip strength with this weird metal handle device, and amused me greatly by shouting encouragement while I squeezed. “GO! GO! MORE! DO IT!” and I thought “People would probably pay a lot of money to have an Asian woman yelling at them.” And then I realized, I *am* paying her. My grip strength and arm strength were 5s all around, I’m good. My favorite suggestion of hers by FAR, though, was that I get someone else to come over and clean the litter box and hairballs so I don’t have to be on the floor. I am actually worried about my “I can do it” being overridden by my innately LAZYFACE nature – I mean, hell YEAH I’d rather not clean the litter box, but I don’t want to make someone I love have to make a special trip out to my place to scoop the freakin’ box for me. That’s dumb.

The PT was there for walking ability – I’d met her before, when I was doing physical therapy regularly before Godzilla Disease had its other name, my usual therapist had called in because it was snowing, so she filled in. She watched me walk down the hall after asking if I had any concerns. I told her I (and other people) have noticed that I lean on walls whenever I can while I walk. I’d kind of thought to myself lately that a cane would be kind of awesome to have around, something else to lean on. We tried me with a walker, which was really awkward. It’s instinctive to lean on it with some weight, but you’re just supposed to use it for balance. And while it’s awesome to have a seat that you carry around with you all the time, it just felt awkward and weird, so I won’t be using that yet. The cane, though, we had me walk with that (again – balance! not support!) and my gait was better. “You kind of..sashay without it, but you’re more stable with that.” I agreed. We tried me with two and THAT was ..comical. I mean, I don’t even get that whole two cane thing. Hikers do it. It looks dumb, and it turns out that it feels pretty goddamn ridiculous, too.

So I have officially graduated to a cane now. I am borrowing one from the ALSA loan closet (which if I have not said before? is a FUCKING AMAZING resource to be able to have, they’re awesome) but I’ll get my own. They said I can keep it as long as I want, spray paint it, whatever; I get the feeling they’ve got quite a few of them.

Speaking of ALSA, the next appointment was with Lance, with his Social Worker hat on. We talked about financial planning, and the major upshot of that was GET AN ELDER LAW ATTORNEY. It’s expensive now, but they can help me plan financially for the future care I’m going to need, and if I have tax-shelter like options, it’s better to take care of them NOW, since SSI looks back a little ways when you apply for benefits. We talked a bit about the Walk coming up, and then his time was up.

The next appointment was all about making sure I can still speak and swallow okay. This made me a little self conscious because it involves making a lot of goofy faces to make sure you can move your mouth fine – stick your tongue all the way out, now try to lick your nose, etc. With three other people looking at me. It was not helped at ALL when Gecko whipped out his iPhone like he was filming, even though he wasn’t because he loves me and I would genuinely be mortified if he posted any pictures like that. (*Author looks sternly at her brother* RIGHT??) Then she gave me a graham cracker and water, to watch how I eat and swallow. That, also, was weird to do with a total of four people watching me. She explained how the mouth moves when you eat, and how that starts to break down, when ALS progresses, and what to watch for. But I was doing excellent, she said, and everything is normal.

Then I met with a nutritionist. We talked about my weight, about my diet, about how evil prednisone is for that. She agreed that it’s not good for me to lose weight, because heavier people have better prognoses, and I’ll NEED that fat later, but I also don’t want to be super fat so I need bariatric equipment or anything, so take that in moderation. Losing weight is tricky, because the body burns through muscle before fat and…I really kind of need that. She gave me advice on what to eat, how to do portion control, and was justifiably disdainful of how much soda I consume (even though it’s diet) and was exasperated when I told her I hate water because it tastes gross. And it does. You can say all you LIKE that water has no taste but you’re a LIAR. She suggested infused water – which my work cafe has all the time, they just dump some melon or something in ice water and call it fancy. I guess I can do that. But…soda, man. Delicious soda.

Next up was Shana. <3 We were short on time for her appointment and ended up spending most of it talking about Doctor Who anyway, because Danielle is ALSO a Whovian and she hadn't met Shana yet so yeah, we totally devolved. But it was awesome. Then we met the respiratory specialist; I was gonna be cute and call her a breathologist, but that sounded familiar and it turns out it's a thing and it's a pretty dumb thing at that. So. ANYWAY. She had all KINDS of toys. There was a thing to measure my ...cough aptitude? (which is good) but I had to do it twice because Danielle is a bitch. hehe. It involved coughing really hard into a plastic kazooey thing and she said it was a good cough, but Danielle said, "you wanna do it again?" as a joke but then the specialist said, "That's a good idea". Damn her. And then we measured my lung capacity, which made me REALLY self conscious because it involves breathing out as hard as you can and keep going even after you can't. I sounded a bit like Muttley. And had to do it a couple of times. THAT one I'd rather not have an audience for again. But it wasn't as bad as the breath stacking. Oh my GoD. So! You get a thing (I walked away with fabu-less prizes!) that is a modified one of these: [caption width="800" align="aligncenter"]hurrhhhh...hurrrhhhh... BREAAAAAAATHE[/caption]

Mine is a prettier purple and collapses. It’s a mouthpiece that you clamp your lips over, connected to a tube, which is connected to that bag. You breathe in as much as you possibly can, and then squeeze MORE air into your lungs with the bag, and again, and again, and then hold all that in for five seconds. And then rest a minute and do it again. And then one more. It feels a little like the opposite of drowning? But you’re in total control so it’s not panic inducing or anything, but you think your lungs just can’t hold any more and then you squeeze more in and then again and oh my god I think I’m gonna pop and what do you mean I have to do one more squeeze oh fffffffffuuuuuuuuuuuuuuuuuu

I have to do that routine every day. For the rest of my life.

It’s to improve my lung capacity, and since ALS kills you by robbing you of your ability to breathe? I’m TOTES WILLING to put up with it. But it..dunno. I guess it was a big-ass reminder of HEY DUMBASS DID YOU FORGET YOUR DISEASE WAS TERMINAL OR SOMETHING? BECAUSE IT IS.

Next step was a quick check in with Dr. Goslin, we went over how I’ve been doing and the results of my clinic so far. We’re checking my liver again because Riluzole can cause damage and it’s no good extending my life by 6 months if I’m going to die earlier because of liver failure. We’ve got an appointment in 2 more months for an extended visit to just recheck everything and see where we’re at. It was good for Gecko to meet her, too. She did a quick strength check, we chatted just a little bit about anxiety and stress factors, and then that was done.

And it was only like…3PM with one more visit to go. During one of the waiting times, Danielle mentioned that she thought it would be more of a meeting room environment, instead of the standard doctor office with exam table that it was. “Yeah,” I told her, “I thought there’d at least be a table, so we could color.” The day was hot, and the room was a bit stuffy even before there were four bodies in it at all times.

The last visit was with a nurse. He was a very nice guy – well, EVERYONE I met yesterday was super nice and patient. His job was to talk to me about things like advance directives. He had a packet about all of that, we talked about what it would take to get the form all official – it doesn’t need to be notarized or anything, he said, just signed with witnesses who aren’t involved in the health care decisions. But just in case someone decides to fight it later, it’s a good idea to send a copy to your doctors, and everyone involved in the decision making. The only thing I ever expect would be a problem on that front is some of my very religious family might be opposed to yanking the plug when it’s time because sanctity of life BLAH BLAH BLAH just let me fucking die when it’s time.

I have faith in my posse, though, to see my wishes done.

We were done by 3:30, and I left with some lovely parting gifts – an appointment for next time, an appointment for a followup with Dr. Goslin in 2 months, an order for bloodwork to be done downstairs before I left, a loaner cane, a breathing excercisey thing (they’re called ambu bags when they’re not modified, but I don’t know if there’s a proper name for them when they’re in ALS patients’ hands after modification), and ALSO an application for a disabled parking permit.

Which, when we left, the DMV was still open so we did that so now I have a gimp parking pass! WOOO!~ Instant popularity when we go out for lunch! “Ride with me!” “NO! Ride with ME!” And I also discovered, because Danielle is ON TOP OF THINGS, that I get to skip to the front of the line when you get a disabled parking pass. I guess terminal diseases have SOME benefit, which is awesome because I was number 608 and they were serving 545.

Danielle was amazing through all of this. She kept very diligent notes, which she is transcribing and putting on our shared Google Docs drive where all of my care info is kept (like meds list, lab results, etc). I quite literally don’t know what I’d do without her. Gecko was also awesome in keeping me happydistracted and he had some really good questions. So I’m grateful that they came with me. And then we ate delicious gyros.

And that’s the story of how I did time.

Walking While I Still Can.

tragerstreit3 Comments

Yesterday was a very ALS-centric day.

Some days I kinda forget I have it. Some days it’s in my face. And some nights it breaks my heart. It’s okay, it’s just going to be like that. This is my life now. It’s not necessarily bad, it’s just …different.

Almost a month ago, the group leader for the American Veterans employee resource group at Intel reached out to me, asking if I would be interested in being involved in an event they were creating. For some reason, veterans are TWICE as likely to get ALS, and for this quarter, his group is working to promote awareness of the disease. I said I’d be happy to, and yesterday they had a table set up in our cafe. I went down to meet him in person and talk a bit, and there was another person manning the booth that actually had ALS.

Mannnnnnnnnn did that guy talk. And have opinions. When I told him how my symptoms were presenting, how for now I’ve just got trouble walking and use braces, he cut me off with, “That’s not ALS. That’s Primary Lateral Sclerosis. You need symptoms in both legs AND arms.”

“…which I HAVE,” I told him, and was ABOUT to tell him if he’d let me finish. “Stabs and shocks showed weakness in my arms, and I’ve got hyperreflexia in my jaw.”

“Oh. That’s ALS,” he conceded.

…Dude. Just because you HAVE a disease, you don’t automatically get more knowledge and authority than the neurologist that diagnosed me. Specially not Dr. Goslin. He also said it’s pretty much guaranteed that I’ll be suicidal sometime, but “don’t make any decisions at midnight. And don’t look at the computer after dark. Wait until the morning, things will look better.” I’m not sure about the “you will be suicidal” bit, but…yeah.

The two of them were promoting awareness about ALS, and recruiting people for the Portland Walk Against ALS. I got talked in to forming a team. I’m…not good at asking people for anything, much less money. This is important, though, so I’ll do it. And I am. Here!

http://webor.alsa.org/goto/TheGodzillaSquad

After a lot of thinking, I went with The Godzilla Squad as a team name. My other favorite suggestions were “The Walking Not-Dead-Thanks-For-Asking”, “Wokka Wokka Wokka”, and “Bracing for A Cure!”

I was kind of overwhelmed by that guy manning the booth, specially as later that day I was going to attend the first support group. Good god, what if the whole meeting is like this? I mean…really nice guy! Knew a lot! But …overbearing and a little argumentative? I’m a pretty meek person (stop laughing) in real life and he just kind of bowled me over. So I had a little trepidation when I left work for the support group.

I arrived craaaaaaazy early. Danielle met me there, and we snaked out for bubble tea before the meeting started. She has the best ideas. There were not many people there at first, though eventually there were about 20 of us. There were two people in chairs, a couple with canes, and one with this awesome walker thing that I’m gonna try for when things get that bad. It had a built in seat and brakes and everything! The idea of walking around with a guaranteed place to sit down when I got tired is AWESOME. He was pretty funny, too. One of the men in chairs had his wife and caretaker with him – he had slurred speech and a great attitude. He presented everyone with a list he’d compiled himself of how often Medicare replaced components on CPAP/BIPAP machines, because it’s not something they ever TELL you. I’m sure the laws will be different by the time I need that information, but it was awesome that he had taken the time to dig that up and present it to the community at large.

We went around and did introductions, of course. I found out that out of the maybe 8 of us with ALS in the room, 3 of us had been diagnosed in April. What the hell. I introduced myself, and told them that Danielle was amazing and wonderful, and she got a little misty. heh. What I FORGOT to say, was “You bitches have NO IDEA how much of an asset you won through my diagnosis. Danielle and I are both power planners, but she is ALL about the marketing and the data gathering and the everything. She is amazing and you are lucky to have access to her.”

The meeting was an hour and a half, but the bulk of it was dedicated to a show-and-tell with assistive devices. They showed everyone what AFOs were, and talked a little bit about options. Several of us had them, and we talked a little bit about our experiences with them. We were showed a power chair, and they talked at length about all of the options available with the seat cushions and controls and front vs rear vs mid drive. I had NO idea you could recline those things until you’re practically prone. I mean, it makes sense that you COULD but it never occurred to me. The two gents with the chairs happily demonstrated their capabilities. It was really informative, but I wish we’d had more time to just chat. Maybe the next one. I may not be able to convince my boss to let me go monthly, but maybe every other.

We had to bug out a little early to go to my therapist so Danielle could meet him. And then we went to a French bakery and had a delightfully snooty waiter (“We’ll take the cheese plate.” “No. Take the brie.” “”..okay, we’ll have the baked brie.” And his suggestions were all on point, but we disappointed him by not liking chocolate so we didn’t go with his dessert suggestions.) and some fancy delicious food.

And it was a really good day. I wasn’t crushed under the weight of what my future holds, it was actually good to see people in more advanced stages who are still doing just fine, thank you. It was nice to talk to a therapist with my primary caregiver to make sure we understand expectations (which really amounted to, I need to get over it and let people who love me do nice things for me). It was nice to volunteer to participate in the walk (teasingly coerced though I was). I hope that all goes well.

But overall? I was reminded again and again and again that I have a terminal disease, and it’s going to cause a lot of complications, but I felt like…it’s okay. It’s going to be fine. I really felt like I have a handle on this for now. And when I don’t, I have people who will step up and help.

Walk This Way

tragerstreit1 Comment

I’ll be in a wheelchair someday.

 

This is just fact.  It isn’t sad or depressing, maybe frustrating because I’m powerless to do anything about my own impending powerlessness. For now, I’ve got braces on my legs.  Then probably a cane, and then probably those crutches that have the arm bands.  I’m sure there’s a medical name for them.  Hang on.  Lemme Google that.  They’re called “forearm crutches”.  Well, that’s disappointingly obvious.  There are some pretty cool looking ones tho.  ANYWAY.  Tangent.  Sorry.  After the crutches will be a wheelchair.  Maybe a manual one because my arms are still really good, and maybe not, but certainly, inevitably, an electric one.  Vrooooooom.

 

Even before my diagnosis, when I was losing the ability to walk, everyone told me “you’ll have the coolest wheelchair EVER” and “You’ll have the pimpenest cane EVER”.  And I really, really plan to.  I joke about cards in the spokes and streamers, but dammit, if I’m gonna sit in the fucking thing forever, I’m going to make it a comfortable and classy ride.  And if I’m going to carry something around with me everywhere I go, it IS going to be an awesome cane.

 

A dear friend of mine was having his own sudden health crisis, and he showed up to work with a cane.  He commented that it’s a lot harder to walk with than you’d think.  I don’t doubt it.  With every step of this progression, I am having to relearn how to walk.  I had to learn to be more conscious of my foot drop so I didn’t trip over things.  With the braces, I’m having to learn to trust them not to break and not feel like I have to stoop over when I walk so I don’t lean on them.  They’re so lightweight and springy I feel like they’ll snap, but carbon fiber’s pretty hardcore and as long as I don’t go all Portal with them, I’ll be fine.

 

In said friend’s post, a friend of his commented that he hopes my friend got a really cool cane.  And since my friend is a musician, he linked this one:

 

https://www.etsy.com/listing/93330041/custom-order-walking-cane-tenor-guitar

 

….WHICH IS FUCKING AWESOME.

 

And of course, because etsy is already one of my favorite wastes of time (as evidenced by the number of things from etsy on my Amazon wishlist (thank you very much Amazon for making that feature because it is awesome (okay I think that’s enough parentheses (no, we need to go deeper (ok seriously I’m done (let’s see if I correctly close them all out))))), I poked around on that sire awhile to see what kind of cane I’d buy for myself, if I needed one right now.  And I have a lot of options, just from etsy alone.  I’ve learned a couple of things.

 

  1. People on etsy make canes that would actually, physically HURT to use for their intended purpose.   I intend to wear gloves when I have to go this route so I don’t callus the shit out of my hand, but can you imagine having to trust your weight with your hand on this? http://etsy.me/1s3I1Jt
    1. SERIOUSLY.  http://etsy.me/1sIA2hu
    2. http://etsy.me/1r4zhSp  WHAT AM I SUPPOSED TO DO WITH THAT, SIR.
  2. You can go out in to the woods, pick up a stick, put a rubber stopper on it and call it a cane.  And charge $60 for it.  http://etsy.me/1jkM0O8
    1. Or $69.  http://etsy.me/1nfS31E
    2. http://etsy.me/1r4zIvL  $87 ARE YOU KIDDING ME
    3. HOW IS THAT A CANE http://etsy.me/1s4UxaO THAT IS CLEARLY JUST A STICK THAT YOU FOUND.
  3. You can buy canes that are going to break the moment you put your weight on it.  http://etsy.me/1ory69e
    1. Or might look awesome but still look like they’ll break  http://etsy.me/1jinDuJ
    2. Seriously this one is awesome but it feels like it would snap instantly http://etsy.me/1q0FvBT
  1. And then there’s this fucking thing.  http://etsy.me/1oJr971  *makes Skeksis noises*  Channnnncellor!
  2. Also, there is such a thing as a cane cozy.  http://etsy.me/1oOK1kn  I can’t tell you how much that weirds me out.  Or explain why.  http://etsy.me/U6Ye16  Just..wow.

 

But there are really good ones out there.  A lot of solid, dependable, suited-to-the-purpose-without-being-medical-looking ones.  If I had to get one today, it’d probably be either http://etsy.me/1xErFHy or http://etsy.me/1qoL3Ds .  Or both.  One for dailies, one for Sunday best.  😀

Outfitting yourself with a cool accessory is a powerful coping mechanism, I’m finding.  I feel SO much better about my pills and pills and pills since I made the apothecary shelves with them.  OH!! I haven’t showed you that lately!  I have Apothecabinet Mark II now.  Separate post.  Yep.  It’s like consoling yourself to go through chemo by thinking about all the awesome wigs you can get and have a different hairstyle whenever you feel like it.  I have to take a lot of damned medicines, but I feel better about it dispensing them all from little awesome jars.  Yeah, I’ll have to walk with a cane eventually, but it’s gonna be an awesome accessory, besides being functional.

My chair will totally have metallic glitter paint and stickers.

Support Structures

tragerstreit2 Comments

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.

Because CHEEEZUS MARY CHRISTMAS.

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

tragerstreit2 Comments

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.

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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.