Ultimate Road Trip: Reckoning

[genderjumper]

Last year I got to revisit Manhattan for the first longest time since I went there for college. It was refreshing in many ways, but also arduous. I've always said I would never want to live in NYC again but I'd love a long visit and I got it. I quickly learned the nearby food options, how far I could walk comfortably (in a mask no less, because those streets are often crowded), not to take the stairs if I wanted to keep my endurance, and how to navigate in one of those Citi bikes that were a little too small for me. It was glorious. Yet there were many moments I didn't get to enjoy my stay because I was scrambling to recover spoons lost to surprises, especially calorie crashes. And it was expensive as hell, only feasible because AH and I were getting a free room and generous wages AND because she offered to cover all our expenses to let me keep my generous per diem.

I learned so much about my disability while I was there.

I'm doing a lot better now. My low days, baseline, and best days are all better than I could have imagined this time last year. And yet they are nowhere near where I think they should be, could be, and I have no guarantee if/when they could ever get there.

Fast forward to this morning in sunny Evanston, IL. I did my homework last night and identified one breakfast place down the block that could meet my dietary needs, maybe a couple of backups. But when I get down there, they're closed. No reason, just closed. I see several other places within sight, but at each counter I find out they either don't serve gluten-free or they only serve dessert pastries, not breakfast food. I wander in another direction, skip an alleyway I thought would be a convenient circuit, and try a couple more options. Finally, I call NP and ask her to just order delivery from whatever is close by. I grab a protein bar, some Cokes, and start heading back.

By the time I'm back at the hotel, I'm nearly in tears. I've walked no more than 6 or 8 blocks in an active but far from crowded suburb and I'm already on the verge of a calorie crash despite my planning and flexibility.

Chicago is the most expensive place on our list, but it also has the steepest learning curve. I'd want to go car-free, which means assuming my endurance continues to improve. I might get a bike, especially an electric bike, but the other day I couldn't do five minutes on a stationary (hotel fitness room). I'd rely heavily on the El, but that means mastering a dense new geography AND peak traffic times AND masking AND caloric needs with little room for error. And somehow getting NP and Kiddo to love it, too. On my best days, I'd like to think I could do it.

But with disability, you don't base decisions on your best days. The stars will almost never align THAT perfectly for long, and the rest of the time I might be sitting at home with a family who wishes we'd picked somewhere less intense. Maybe in another year, I could do it with ease, but I cannot build a life on best-case scenarios.

So we're taking Chicago off the list.

I love it here. Before Long COVID, it was my dream city. I could be my best self there. But that's not who I am any more, my body won't let me, and this decision needs absolute clarity about the world we live in now. And in this world, I'm too sick to put myself in the place with the highest prices and the steepest learning curve.

We have friends (and pizzas) to see here, but the tour is off and we may leave a day early. NP can't wait to get home and see the birdies. We'll swing through Champaign as planned, but that was always going to be a half-day at most.

Comments

[otter]

My advice to any one applying for disability/SSI/SSDI/usw is to always describe your highest support needs. Same goes for what you're doing and I think you're doing it well. I'm still learning my limitations, as I've nearly always been the one expected to take care of my immediate family. Taking Chicago off the list makes all the sense.

[sabethea]

Oh lovely, I’m sorry about Chicago and Long Covid taking that away from you. I understand too well about chronic illness stealing dreams that you still want and can still imagine, if only x… *gentle hugs if you want them, or a random cube of ultimate distraction if you don’t*

In general, randomly, I do recommend an electric bike. I had one about 25 years ago (yeah, I was ahead of the trend) in the days when my ME etc wasn’t nearly as bad, and while I couldn’t use the pedalling bit most of the time, you don’t need to. But you can do a bit of actual pedal cycling if you have the spoons and it would be helpful, and if not, just use it as a practical way to get around. I was working part time and used it to get to work and back.

[flamingsword]

I am sad with you that Covid has taken away another thing you dreamt of, and I support your decision to be as realistic as possible with your expectations of your health, energy, and mental bandwidth.

🫂💜🫂