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!
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.