My Body Feels Like a Smile: A Weekend Roundup
Happy Monday!
It’s been two weeks since my last Weekend Roundup update.
Last Monday, after spending the weekend at Camp Whitman on Seneca Lake, I had every intention of sharing about the educator’s retreat hosted by Next Generation & You. But I was too tired, my brain was too foggy, and by the time Monday night rolled around and Monday became Tuesday, it just seemed like we were already into the week, and I was still in bed.
In fact, I spent Sunday through Tuesday in bed probably 80% of the time, barely leaving the house.
After spending that weekend quite literally in the forest, my body rebelled. My MCAS symptoms were high, and I was feeling this complex, dichotomous mix of pride, joy, and a slight sense of dread.
Pride and joy because I had traveled back and forth to the Finger Lakes two days in a row and, because of my mobility scooter and other accommodations, I was able to fully participate in the activities of the retreat: journaling, team-building games, hiking, reflection, and simply being in the company of like-minded educators. And dread because I knew what my body had just been exposed to.
Weeds. Pollen. Trees. Grass. Dust. Pretty much every living organism that exists beside a lake and in a forest seems capable of encouraging my mast cells to lose their minds completely, and I had no way of knowing exactly what the aftermath would be.
But instead of spending the entire retreat inside my head, anxious about a future I had no way of controlling, I lived in the moment. I was active. I was present. I knew that my bevvy of antihistamines and histamine blockers were sitting in my bag (and at home), ready to help me cope with whatever my body decided to do, and somehow just knowing that made me feel more confident, more prepared, and most importantly more in control.
Years ago—hell, months ago—that kind of trip would have been completely out of the question. I didn’t have the knowledge. I didn’t have the proper tools. I didn’t understand the accommodations I needed. And because I couldn’t adequately prepare for what might happen afterward, I would have avoided the experience altogether rather than risk the inevitable post-event crash that could last one day, one week, or even longer. Back then, the risk simply felt too great.
Luckily, I had the whole of last week intentionally unplanned. So if my body decided that resting was going to be the work of the week, there was nothing for me to do except listen. It didn’t end up taking the whole week. And that brings me to this weekend.
August 8 & 9
This past weekend, I was productive in a completely different way. Saturday morning, I woke up early—around 7 a.m.—and my body felt like a smile. That is perhaps the best way I can describe it. My brain was clear. My pain was under control. I had energy. And so I decided to keep the positive momentum going.
I stayed all day indoors, but this time being inside wasn’t about recuperating in bed. I spent the entire day tackling deep-cleaning projects I simply haven’t had the energy or brainpower to do for months.
I cleaned baseboards. I cleaned behind my refrigerator. I pulled out a steam mop I haven’t used in well over a year.
I dusted.
I vacuumed my entire apartment and used a new Arm and Hammer Carpet & Room Allergen Reducer
I steam-mopped my kitchen and bathroom.
I baked—A LOT…tinkering with a few recipes I’ve been wanting to try.
And somehow, in between all of that, I read two cookbooks.
This boy was on fire.
Not literally, of course. Metaphorically. It felt good to be so productive. It felt good to move from one task to the next with a fully clear brain and a body whose pain was being kept in check, thanks in large part to the new cocktail of pain medications, supplements, antihistamines, and other medications I’ve been experimenting with and adjusting alongside my care team. I was busy and engaged from practically dawn to dusk. And I loved it.
Sunday was different.
I went to my weekly Sunday worship and then spent the rest of the day hanging out with my brother.
We attended The Lucky Flea downtown, had dinner at Nirvana, and then made our way back downtown for ice cream at the recently opened Chill Ice Cream Shop on Franklin Street in Downtown Rochester. One day indoors. One day outside.
It never ceases to amaze me how normal I can feel when the worst parts of my chronic illness are under control. I put normal in italics because I know that word is loaded. There is no singular normal body, and there is certainly nothing abnormal about being disabled or chronically ill. But there is something almost surreal about experiencing moments when my illnesses become quiet enough that they stop occupying the center of every decision. When that happens, I can live.
I can clean my apartment.
I can experiment in the kitchen.
I can read.
I can worship.
I can go to a flea market.
I can have dinner with my brother.
I can get ice cream simply because we feel like getting ice cream.
I can think, plan, daydream, and create and do all of those seemingly mundane human things that most of us rarely stop to consider until our bodies make them difficult. And perhaps that is what these last two weekends have reminded me most.
Accommodation does not make my disability disappear. Medication does not make me invincible. Rest does not guarantee that tomorrow will be a good day, and a good day does not mean that I have somehow conquered chronic illness. What these things give me is access.
Access to experiences I once would’ve declined because the physical cost felt too high.
Access to my creativity, to my community, and even to the outdoors, although the outdoors and my immune system are often mortal enemies.
They give me access to my home as a place I can care for, enjoy, and live inside rather than simply a place where I recover.
And maybe most importantly, they give me access to pieces of myself that chronic illness can sometimes feel unreachable.
There will still be days when my body demands the bed. There will also, I hope, continue to be Saturdays when my body feels like a smile. I am learning not to measure one against the other. The work now is to build a life spacious enough for both. I am learning to prepare when I can, to make room for accommodations instead of seeing them as some kind of deprivation, and to rest without attaching shame or guilt to what my body needs.
I am also learning that participation does not have to mean proving anything to anyone, including myself. I do not have to push past every limit just because I am having a good day, and I do not have to apologize for the days when rest is the only thing I can manage. What matters is that when my body gives me an opening, when there is a little more energy, a little less pain, a clearer mind, or simply the capacity to be present, I let myself step into it and live.
So perhaps this is your reminder, too, especially if you are still learning how to live inside a body that asks different things of you from one day to the next. If there is something that makes your world more accessible, more manageable, or simply a little more possible, use it.
Don’t let self-consciousness keep you from taking the mobility device.
Wear the mask if it helps you participate.
Take the medication that numbs the pain (no one should suffer through pain).
Cancel the plan when your body is telling you no, and make the plan when it is telling you yes.
Stay home if that is what you need, go outside if that is what you want, and sometimes, if you are lucky enough to have the capacity, do a little bit of both.
I am learning that none of these choices cancel the others out. Resting does not mean I am giving up, and participating does not mean I have somehow outrun disability. Both are simply part of listening more closely to the body I have. So rest when your body asks you to rest, without turning that need into a failure. And when your body gives you some room, when it opens the door even a little and says there is enough energy, enough clarity, enough capacity for something more, walk through it.
Live.
And I promise, if you follow this advice, whether you are disabled or not, your body will smile too. :)
