CN: Detailed descriptions of the experience of pain and other health issues, discussion of chronic pain, disability, chronic illness.
My chronically ill friends and I joke about the medicine cabinet worth of supplies we take with us on any trip that’s longer than an hour because we never know what we’re going to need. Going to an appointment: Water, meds, lip balm, hip-brace, sweatshirt. For work: All of that plus lotion, white flower oil (think Vick’s vapor rub), sinus spray, anti-chafe balm, a second pain med in case my normal one isn’t enough, wrist braces, and elbow brace. Packing for a full day of errands involves an even larger haul.
But why is such intensive preparation required for a simple outing?
About a year ago, the concert I went to had nothing but flat, wooden, church pews for seating. My friend who was in the concert was only in town for a short while so I wanted to see her before she left. But when I walked into the main room and saw the hard, unpadded, unsupported benches --seating designed to inflict pain on its inhabitants to induce holy suffering-- my heart sank.
“For most people, these benches are uncomfortable. For me, they put me in agony for the entire 45-minute performance.
There was no position I could sit in that was comfortable. I supported the arch of my back with my sweatshirt as best I could (thank god I thought to bring it) and tried to keep the majority of the strain on my upper back and shoulders, so my lower back and hip wouldn't be damaged. The bench dug into my spine, my shoulder yelled louder and louder, the bones in my legs were constantly pressed into the wood beneath them, and slowly the muscles in my torso and upper back were consumed with tension and fatigue. The instinct is to squirm and move until you find a better position, but often if I did this, the pain would worsen or be just as bad but in a new location.” -- Post from my Instagram, 6/28/18
By the time the performance was over, my ability to walk had been reduced and I was thinking carefully about every step. I had to cancel my evening plans in order to recover from the experience. Even sitting and spending time with my friends would’ve been too taxing for me and I’d have been much worse the following day if I hadn’t gone home and rested immediately.
While my health has improved significantly in the two years since quitting my retail job, the experience at the Church was a sobering reminder that I’m still disabled and I still have to plan and predict what my needs will be in different situations in a way that able/healthy people don’t have to. Where other people have spontaneous and carefree outings as a choice, my outings require a great deal of forethought and there is always a risk I’ll end up in a situation like I did in that Church-- suffering with no recourse.
A few months ago, I received an invitation for an event at this same church. I had forgotten the name of the Church and didn’t realize that it was the same one that had caused me so much suffering before. But my boyfriend, who was performing as part of the event, came home after rehearsal and urgently warned me that it was the same location so that I knew to bring pillows this time. (That he thought to warn me and understood how important it was that I have this information is one of the many reasons I love him).
My boyfriend planned to arrive at the event about a half-hour before I needed to, which while not substantial, was early enough in the day that it conflicted with my morning pain management routine and I didn’t feel it was worthwhile to disrupt my sleep schedule, so I elected to come later by bus. But I knew I’d need two pillows, one to go underneath me, and one to support my back, and carrying two pillows and my purse on the bus sounded awkward. My boyfriend offered to bring the pillows with him and I could fetch them from him before the event. More variables to consider, more calculations.
I happened to be fighting an infection at the time, which meant extra bathroom trips. I decided I should use the bathroom when I arrived at the venue as it would be difficult to slip away once the event had started and I had no way of knowing how long I’d lack access to the bathroom. But once there, I saw no bathroom immediately visible and found myself ushered into the worship room.
I found a place to sit and put my bag and jacket down to save the place. I made my way to the front of the room where my boyfriend was playing background music. I did my best to put on my energetic invisibility cloak as I stepped out in front of 30 or so people staring in my direction. I reached behind my boyfriend’s chair to grab the pillows. Invisibility cloak or not, I felt the eyes of many people on me as I returned to my seat with the two large pillows in my arms. I glanced around and couldn’t see anyone else with any kind of cushion.
I situated myself and my pillows and waited for the event to begin. I started to realize it would be a bad idea to try to wait until after the event to use the bathroom, but my anxiety kicked in and I worried it was already too close to the start of the event to risk stepping away. I remained in this decision paralysis, the pain in my bladder increasing, whether due to real urgency or due to thinking too hard about my bladder I couldn’t tell. I watched minutes I could’ve used to slip away and back tick by, missing chance after chance. As the event began, I glanced through the program to try to plan a good time for me to leave without disturbing anyone or missing anything important.
Thankfully, I made it through the whole event without having to step away. Having something else to focus on made the discomfort much less, and I got to the end without very much pain and enjoyed myself instead.
But after the event, the reception contained an entirely new set of decisions and assessments. My hands full with the pillows and my handbag and my program, I awkwardly made my way upstairs to find a place to set my things aside.
Then began another bout of decision paralysis. There was a HUGE array of food available, plenty with no gluten ingredients, many of them labeled as such. However, even gluten-free food that’s been prepared in the same space that’s been through unknown handling practices and been exposed to contamination from other attendants using the same knife to spread some cheese on their gluten-filled cracker, is always a risk for me to eat.
Usually, for special occasions, I set aside these worries in favor of giving myself an enjoyable time and I just take the risk. But since I was fighting an infection, I really didn’t want to make it worse. I was also starting to get hungry and lately, my body had been less forgiving in how much time I could go without food before it shut down. I was already noticing my hands starting to shake. If I wanted to catch the bus home, I’d have to leave in 15 minutes to get home and eat.
But I didn’t want to leave. I had yet to spend time with my friends who were part of the event, including one friend who was here from out of town, and who knows when I’d see him again. I debated braving a sugar crash for friends, risking eating the food and getting sick, or going home and missing out on social time, around and around for a good ten minutes. I finally decided that I’d regret not seeing my friends and that I needed to put food in my body more than I needed to avoid potential worsening of an infection I already had. I grabbed a plate and filled it with olives, cheese, and pickled vegetables.
My shakiness from lack of food had progressed significantly and I looked in vain for something gluten-free with a high sugar content to help reduce it. At first, I came up empty and then, aha! The punch! I approached the lady serving small teacups full of punch and asked for a cup. She filled it and passed it to me. I was painfully aware of my hand, shaking so hard that I needed to grip the cup with both hands to keep it from spilling. I wondered what the punch lady thought of a 20-something whose hands behaved in a way that you might expect from a 70-something.
I downed my punch quickly and came back for another cup, still shaking. Once I finished the contents of my plate and my cup, it took too much physical energy to hold them steady in my hands, so I put them down.
I stood in a circle with friends, chatting, keeping track of how long I had been standing and estimating how soon I’d need to move to the side and find somewhere to sit. Should I leave the group to sit and rest? Should I ask them to follow me? Should I just deal? And on and on the questions went.
In a world where lack of accommodation for disability is the default, so much of the work of managing chronic illness is just this: A thousand tiny decisions about how best to protect my health while still doing what I want to do, weighing costs and benefits, analyzing resource levels, planning ahead so that I don’t find myself in a crisis with no tools to cope. If an issue comes up while I’m out and about and I don’t have access to the needed tool, I have to choose between suffering or leaving early.
So much added labor makes it hard to go out to social gatherings, especially when there are so many unknowns: What’s the seating like? How long will we be sitting or standing during the event? Is the floor made of wood or concrete? Will there be food I can eat safely? Will the building have air conditioning or open windows that will let pollen inside? How close is the nearest bus stop? Do the people there know me and my limitations or will I also have to navigate how open to be about my disability and my needs during interactions with strangers who will have no idea my ability levels are unusual just by looking at me?
Even the most experienced planners can’t account for everything.
At an outdoor wedding a few summers ago, there was plenty of decent seating in the reception area where people were gathering and greeting each other but when it came time for the ceremony, we were lead to a smaller area where there were only a couple dozen chairs for around forty guests. We were informed that only family members or those on the special guest list were allowed to use these chairs. If we weren’t on the list, we could only use the chairs if the rest of the special guests were already seated and there were extras.
What would be at worst a simple inconvenience for someone else was a big problem for me. Standing still for more than a few minutes was painful during that part of my slow healing process, I could not sit on the ground because there was no comfortable position for me to sit without a structure to support my back, and I had no way of knowing how long the ceremony would be-- no way to know how long I’d be in pain, no way to ration and allocate resources accurately.
Even though I have plenty of practice at adapting to and expecting situations like this one, I never would have thought to ask ahead of time to make sure there would be seating available to me during the ceremony or to ensure that the seating would be on chairs instead of the ground.
Thankfully, when the time came, a chair became available, but the weight of having to consider whether I wanted to risk pain and injury or choose to miss my friends’ wedding ceremony, didn’t fully leave me for hours.
Of course, my day to day life at home isn’t nearly as challenging as navigating a one-time outing because many issues that crop up in the moment are things I can deal with if I have my whole tool kit at hand, or the ability to sit in my most comfortable position and rest with no demand on my energy.
But I simply can’t take every medication, toiletry, and piece of equipment with me everywhere I go, nor is the ability to fully rest undisturbed transportable, so I have to make educated guesses about which tools I’m most likely to need and which ones will help me the most in a pinch.
Chronic illness means that anytime I go to an event with unknown variables, I’m taking a risk. It means that going out needs to have a significant reward to be worth the potential risk. It means it’s so much easier to just stay home.
For these reasons, it’s incredibly meaningful to me when I arrive at an event and people go out of their way to accommodate my specific issues, or the possibility of common health problems in general, without my even asking!
While I would love accommodation to be normal and common, I have to assume that I won’t have any help in getting what I need when I go out, and that makes any act of intentional accessibility feel like a pleasant surprise: A house party with at least one chair in every room so I would always have somewhere to sit; a prepared meal where I have been informed exactly which foods I can and cannot have and am encouraged to check ingredient labels to make sure that they are safe; a chair reserved for me because of its high level of comfort and/or offers of pillows to improve it even further; a friend volunteering to come have tea at my place so that I have all my tools at arms’ reach and I don’t have to spend extra resources on leaving the house.
When people accommodate me without my asking, they are giving me the freedom of choice, they are giving me precious moments in which I don’t have to plan or worry or analyze. Just the simple pleasure of getting to focus on being present with the conversation and people I care about is an incredible relief.
The day I ran around that church carting my two pillows everywhere and searching for gluten-free food, there were two moments of accessibility that made me smile. The first was a note in the program about receiving communion, saying that if you could not come to the front, you could let someone know and they would bring communion to you, accompanied by the phrase, “Gluten-free communion wafers are available on request.”
And the second: a priest uttering the words, “Stand as you’re able”; a simple but powerful acknowledgment that the ability to stand is not guaranteed or expected.
The existence of my limitations does not bring me down. The accommodation of them frees me.