I was on vacation in Leavenworth this weekend. It was partly to celebrate Danielle’s birthday (which is tomorrow, November 4th) and partly because we’ve been itching for a road trip awhile and a birthday was a good excuse. My weakness reined us in, for sure, but it’s a small town so we didn’t have to compromise much. There were three instances in which I told a total stranger about having ALS, the first being the woman who checked us in to the hotel apologetic as hell because our room was on the third floor when she saw I was using a cane. She asked what happened, had I broken my leg? She was very sympathetic when I told her of my diagnosis, and a little bit baffled because I was so young. She knew about ALS because of the Ice Bucket Challenge (I FUCKING LOVE THE ICE BUCKET CHALLENGE); she was very willing to be as accommodating as she could to help my stay be as easy as possible.
And the other two were on opposite sides of the spectrum.
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One:
Danielle’s dropped me off at a shop to wait for her to park, because she has to park kind of far. (She wound up actually just parking at our hotel and walking the four blocks) I sat on a bench in front of the spice and tea shop we’re going to check out, and after a little while, an older woman with a walker approached. I asked if she’d like to sit, and scootched over to make room for her. I had been in the middle of adjusting my braces, because I’d left some velcro exposed (still haven’t made my straps, dammit) and it was catching on my socks. She asked what they were for, did I hurt myself? I told her that I had ALS, clarifying Lou Gehrig’s when her face was blanked.
“Oh. I’m so, so sorry,” she told me, with genuine sympathy.
“Thank you,” I told her sincerely. “I’m doing very well, though. It’s going to be okay.”
She was silent for awhile. “To tell you the truth,” she says quietly, “I wish to God it was me instead of you. You’re too young.”
I looked over at her and realized then that she was very near to crying. Her eyes were brimming with tears and she had a faraway look. “Oh, sweetie, I’m okay, I PROMISE,” I told her quickly. “My progression is so slow. Nothing hurts. I’m okay, it’s alright.”
She asked how old I was, and repeated “too young” when I told her. We introduced ourselves to each other, her name was Sheila. She asked a little bit about my progression, my symptoms, what my support structure was like. She agreed in the end that I was in the best possible situation and seemed mollified, but still upset. Danielle showed up then, and we said goodbye.
Once we were in the store, I said quietly, sheepishly, “I just made a total stranger cry.”
Two:
We stopped on the way home, randomly, in Goldendale, Washington. Because we needed a pee break and we’d never been there before. We discovered an honest to god observatory, saw some deer in a graveyard, and then Danielle saw a bookshop and wanted to go in. The book store turned out to be an Everything Store – the guy had literally everything. Books, jewelry, games, toys, fishing gear, light bulbs, office supplies, plumbing gaskets, literally everything. The shopkeep was named Dan, and came out when he heard us come in.
“Good morning,” he said cheerfully. “How are you today?”
“Fantastic,” I told him, “you?”
“Wellllll I was GONNA say ‘hobbling along’, but saw your cane and thought better not.”
I laughed and told him it would have been alright. He told me to have a look around and tell him if I needed help finding anything, he probably has it. After looking around a bit, I conceded, “You really DO have a little bit of everything.”
I stood at the counter while Danielle looked around. He looked over to me. “If you don’t mind me asking, what happened? Is it an injury? Something you were born with?”
“ALS,” I told him, “Lou Gehrig’s – recently diagnosed.”
“Oh, I’m sorry,” he said.
I gave him what is now my standard, “Thank you. I’m doing really well, though.”
And after awhile he smiled and said, “You know, I can tell. You’re going to be okay, you’re handling this great. You have a very bright spirit. You’re handling this with the right attitude; you’re gonna be fine. Nothing’s gonna get you down.”
I grinned and told him he was absolutely right. I have the slowest progression, the best support network, and the most amazing friend in Danielle. “That’s the right way to be about it,” he said.
We introduced ourselves, and had a little chat about the origin of my name, he told Danielle and I about the apartment he had in the basement of the store for his kid (“I didn’t want him living at home”) that his son never moved in to, his other property in a town of 93 people, the work he does on it. We chatted about a whole lot of little things while Danielle figured out what she wanted to buy. I bought some Topps stickers – because I’d been on vacation 3 days and hadn’t bought ANY – and instead of selling me five packs for $10, he asked if I’d like to buy the whole box for $15. I said heck yes. We said our goodbyes with a promise to stop in again if we were in the neighborhood. He repeated his complete confidence that I was going to handle this just fine.
We left the shop, and I was in a great mood.
++++++
Both reactions were sincere, neither was an incorrect way to behave. Your reactions are entirely your own. The only ways you could possibly screw it up when I tell you about my disease is to a) gasp and tell me it’s SUCH an awful disease and it’s going to get so much worse, or b) tell me it’s my own fault somehow for a life of sin or something. Or laugh. That would be pretty bizarre and awful of you.
Both reactions sincerely touched me. One left me troubled, one left me buoyant. Neither of my reactions are the responsibility of the person invoking them. I have a hard time accepting the inverse, though. When I tell someone about the diagnosis, and it predictably troubles them, I feel guilty and responsible for bringing them down. It’s not my fault. And it’s not her fault that her deep sadness troubled me so much. It was not his job to cheer me up. And it’s not my responsibility to sugar coat or put a smiley face on a terrible situation.
It is not my responsibility, but it is my nature. And I could tell it was his, too. He and I are of the same “Fuck it, it’s gonna be alright” mentality.
And sometimes, I’m of her mindset, too. This is terrible, I feel helpless, I wish I could change it.
Both reactions are correct and useful, in their own turn. And I’m happy to have met both of them, this weekend. It’s put words to perspective, and both of them were very sweet people and I’m glad they spoke the words they did. It means the world to me, to know I’m not alone when I’m sad, and to know there are cheerleaders who have got my back when things look awesome.
Even when – especially when – that support is from complete strangers.