Need to Know Basis
Waiting is not easy.
I’m either having an MS relapse or a bitch of a medium-aged person’s muscular-skeletal-type issue. And it’s taken a cool three weeks to narrow it down to these options.
So many humans understand this kind of waiting: Something is acutely wrong, and our bodies are telling us about it in ways that are hard to ignore. Depending on our level of wealthy and privilege, we may see one or more Western medical doctors, often in an evenly-spaced series. We may see acupuncturists, massage therapists, chiropractors, and others. And we wait.
My relapse/INSERT ALTERNATIVE started about three weeks ago, and it was defined by acute pain. It was akin to an MS symptom I get, but different—and worse. Messages were sent. Video appointments commenced. Theories were developed. The pain peaked, numb patches activated. And then my neurologist told me to go to the ER to rule out more life-threatening issues.
As so many of us know, an emergency room visit is a very special circle of Hell. It’s scary, lonely, uncomfortable, exhausting, interminable, and often overarchingly unhelpful. Because my family was away, I had to go alone. I’d only driven myself to an ER once before when our cat got her paw stuck in a window sill and she bit me as I tried to get her unstuck and I saw some gnarly, slow frame rate images of my inner thumb and I went to the ER.
This ride was different. I wasn't panicked, but I was sad and scared. I cried in the waiting room, got called to the treatment area, and then had to calm myself by counting the specks in the linoleum tiles as I waited to be seen. I got a CT scan. It was normal. I got prescribed an opioid and told to follow up with my neurologist. I got in my car and proceeded to have the most spectacular break down I’ve had since the second-to-last last MS attack I can identify in retrospect.
I was the English Department chairperson at the high school where I was a student. I’d made myself go to the spring play, despite feeling very strange and so tired. I walked out to the parking lot and had zero idea where my car was. But it wasn’t just a brain fart kind of misfire. As people streamed around me, saying goodbye, I just stood there, unable to process what came next. For weeks, I’d been holding myself up on the wall as I made my way to the main office, wondering if maybe I wouldn't make it. I was following a weird diet meant to lower inflammation for my fibromyalgia, my official diagnosis at the time. Finally, I followed people out into the parking lot and wandered around for perhaps 20 minutes. Even though my brain wasn’t working and I probably looked like a zombie, somewhere inside I was absolutely freaking out from behind tinted Plexiglass, banging with clenched fists.
When I finally happened upon my car and got in, I started to cry. By the time I got onto the highway, I was sobbing harder then I ever had. It definitely wasn’t safe to drive, but I continued anyway. It was all totally involuntary and felt like it came from a cellular level. When I pulled into our carport, I opened the door, made it to our postage stamp lawn and collapsed. And that was the relapse before the one that led to my diagnosis, when lesions finally affected my legs and not just my brain.
On the way home from the ER weeks ago, the same thing happened, sans the physical collapse. Even though I don’t really know what’s happening yet, something in me felt like it knew.
It gets drilled into MS patients: If you have a new or worsening symptom that lasts more than 48 hours, contact your neurologist immediately. The idea is that the sooner you start steroids, the more symptoms will diminish. In my mind that had become, “If you don’t start steroids right away, the attack does more damage.” That belief lit a special kind of anxiety fire under my ass. Meanwhile, my neurologist wanted me to see my primary care doctor to rule more stuff out and get pain management. So I did that. She thought it was probably an MS relapse, but ordered a lumbar spine MRI to rule out a pinched nerve.
This week, my neurologist put in urgent add-on orders for cervical and thoracic spine MRIs. But “urgent” means something different in the medical world. In this case, it meant the end of August. Thankfully, my neuro explained to me that getting steroids won’t change the long-term damage, so it’s really not an emergency after all.
When our daughter was little, we read a lot of Mo Willems books, and we loved them so. The Elephant and Piggie series are a delight. Since patience isn’t super easy for kids, Waiting Is Not Easy! was very useful. And boy howdy does it resonate right now. Because even though I now understand that this isn’t an emergency in the sense that the outcome will change if I don’t act, it still feels like one.
We live inside bodies that are telling us something is wrong all the time. So when something more acute and less definitive happens, it’s another add-on. Those stretches between a test, its results, and the full explanation about their implications are agony. Waiting is, in fact, not fucking easy when it comes to our fundamental wellness and misfiring bodily functions. It’s hard. And even though the outcome, in this instance, will probably ultimately mean waiting some more for symptoms to subside (pinched nerve) or maybe taking steroids and changing my type of disease modifying therapy (MS), it’s hard to sit here with these symptoms not knowing if this progressive disease that I have is actively advancing on the faster track. If my body is attacking itself, forming one or more balding patches on my myelin that will light up on the MRIs like moonlight through a window.
Knowing and not knowing can both be so hard. That’s the weird paradox zone humans have to tolerate so much of the time. And those of us with chronic illness may have a special angle of understanding about that zone. For now, I am living through this very uncomfortable stretch that will someday just be another segment in the chain of events that yokes the neck of my life. But I know I’m not alone here, even if it sometimes feels like it. And you aren’t either. Elephant has Piggie. Piggie has Elephant. That’s how we bear this exquisite ambiguity in all of its gorgeous and aching forms.