A few nights ago, I had an assignment to read a book passage before my study group. I’m not a fan of public speaking, but public reading comes easy for me. As long as I know what words to say, I don’t get overly stressed about it.
Plus, looking at written material means I don’t have to look at the audience. That’s important for an introvert, and because the whole “see them in their underwear” thing always freaked me out.
I’m a good public reader, or so I’ve been told. Humble brag? Maybe. True or not, I’m given the honor frequently.
Mostly, I don’t mind. That is, until something goes wrong. And far too often, something goes wrong.
My Body Hates Me
Since my bipolar disorder diagnosis, I’ve thought of my brain as a separate entity. That separation made it easier to cope with the troublesome voices I was constantly hearing. It wasn’t me. It was that crazy brain of mine.
Years later came the diagnosis of Familial Mediterranean Fever (FMF), and to cope, I started to distance myself from my body as well.
“My body hates me,” I tell people.
FMF creates excessive inflammation which over time crushes your vital organs. My heart, lungs, and liver bear their scars, but we’ve slowed the progression with medication.
You can see why I’d want to create distance. It really is trying to kill me.
The inflammation can be anywhere, but is most common in the abdomen, and for me, in the chest. I can tell when it’s increasing, because it feels like there are belts wrapped around me that are progressively getting tighter.
Except for the terrible days, I can hide the pain and discomfort behind a reassuring smile. So it was that I didn’t tell the group I was suffering and attempted to fulfill my reading assignment.
A Good Start
Before I got up to read, I knew things were getting worse. The stomach pain was so intense I had to rub it for relief. Breathing was uncomfortable while still sitting in my chair, but I pushed doubt from my mind and went to the stage when they called my name.
The first couple of paragraphs went fine.
I got this, I thought to myself.
My body laughed wickedly deep inside. The belts got tighter.
With each new breath, the amount of air coming in was less than the one before.
There was a lot of text left in my reading, but I already knew I would run out of air before then.
Running Out of Air
Have you ever run too far? In high school, we had this horrible test every year called the Twelve Minute Run. The requirement was to run the entire twelve minutes and reach a certain distance in that time.
I think the distance was a mile, but my memory isn’t a reliable guide.
Failure to hit the goal meant weeks of additional gym time until you could take the test and pass.
As you can imagine, there were a lot of students collapsing and tossing their cookies on Twelve Minute Run Day, especially if you were unlucky enough to have gym class right after lunch.
Big yellow garbage cans lined the running track, but often not close enough. You’d be surprised how few barfing teens can fit comfortably around a bin.
It was the worst kind of medieval torture, and something I hope the school no longer requires.
That feeling, when you’ve run far longer than you should, when it feels impossible to draw any more breath into your exhausted lungs, that’s what I felt.
This inability to breathe can happen randomly and for no apparent reason. It’s a symptom common amongst many chronic illnesses.
I Can’t Breathe
I’m a very stubborn person. Somewhere, my mom is yelling out a sarcastic, “No, not you!”
Maybe not as stubborn as when I was younger, age and limitations have softened me some, but still fairly stubborn. My dad says it’s our German heritage. Sounds like a good excuse to me.
Once I start something, I’m determined to finish. Tell me I can’t, and I’ll prove you wrong, even if I almost die trying.
With five paragraphs left, I squeezed my free hand into a fist and kept reading. Peering at the page, those paragraphs seemed to grow before my eyes to Faulkner-length. The situation was becoming hopeless.
Each word became more difficult as I took longer and longer pauses at every punctuation mark. What, am I not supposed to pause at an apostrophe?
At one point, as if someone else were talking, I told the audience, “I’m having trouble breathing.”
Panicked faces looked back at me, but no one seemed to know what to do. So, I pressed on.
Try as you may to fight it, not being able to breathe causes anxiety. Anxiety then causes sweating, shaking, and a further decreasing ability to breathe.
Picture it: my voice getting weaker, my hands shaking, and my face undoubtedly red and sweaty. Ah, there’s a catch for you, ladies.
The tension in the room was palpable as the reading became meaningless and all eyes were watching me to see what would happen next.
Success, Then Anger
Through jagged breaths, I finished every word of my reading, but those last sentences weren’t very meaningful. When I looked up, the room was spinning and hazy. It took every ounce of energy I had left to stay upright and make it safely off the stage and back to my chair.
Sitting down, the anger set in. Anger that my body was making it impossible to hide my illness. Anger that I had given a terrible reading. Anger that the voices were now telling me how terrible I was.
If my body were a separate entity, I would have dragged it outside and pummeled it with whatever I could find. I’m sure I would’ve been able to find rocks or tree branches. At the very least, I could have run it over with my car.
Unfortunately, we’re inseparable, so all I could do was be angry. A deep, searing, destructive anger.
My study group is a compassionate circle of friends. While they don’t all understand chronic illness, they try to be supportive.
I would’ve preferred to be invisible and disappear from the room without notice. Instead, I had to put a smile on my face and force myself to let my friends comfort me.
In the end, true friends and support are the most important things in coping with chronic illness. They keep me moving forward and remind me why I’m fighting.
The anger stayed with me, though, and I’m still seething today. It will pass, but I won’t hate my brain or body any less.
Living with a chronic illness is a constant adventure, but not one I would recommend you take willingly. Relatively fine one moment, you can be a helpless mess the next — shaking, red-faced, and barely breathing onstage.
The only option is to keep fighting.
Will I volunteer for or accept another reading assignment? Probably.
This is not the first time it’s happened and definitely not the worst. I survived the embarrassment of the worst time, so why stop now?
There may come a time when I have to stop, when the anxiety I deny feeling and the lack of oxygen is too intense. When that happens, I’m sure my German stubbornness will give in, but that day is not today.
Today, I choose to keep fighting.
Scott Ninneman is a bookkeeper by day and a writer by night. He’s the voice of the blog, Speaking Bipolar, and writes about living with bipolar disorder and chronic illness. He also enjoys writing short stories, poetry, and inspiration for personal development. His interests include reading, cooking, and entirely too much TV.