four walls…

Last week I was at work, elbows deep in a growing stack of tedious legal documents, when I got up for my customary 2:00 p.m. “It’s almost time to go home so I’m going to kill time” cup of tea. You know when tea tastes best? When you’re supposed to be doing something else.

I returned to my desk with a steamy mug of Kama Sutra Chai, which isn’t a bad cup of tea except that you have to drink it upside-down with one leg behind your head, when I pulled out my plastic pill organizer for the afternoon medication. But instead of the standard 4 pills remaining, there were 5. Which means I didn’t take my morning medication dose.

That by itself isn’t that unusual. These days I often skip my morning pills in order to prevent blood pressure drops while at work. What WAS unusual, what has never, ever happened, in 9 years of dealing with this shit, is that I realized I had not had any symptoms since that morning. Not one. An unbelievable four hour symptom-free stretch.

Before you get too excited, I’m going to jump ahead and spoil the conclusion of this post: it doesn’t end with me telling you I’m cured. I’m not. That’s not how POTS works, and this isn’t that story.

I have symptoms daily. I can’t imagine that comes as a surprise, and I expect that’s true for most people with postural orthostatic tachycardia syndrome (POTS), and in the larger picture, for most chronic illnesses. I’m not cognizant of my symptoms every minute of every day, but if I stopped for a moment to focus on the palpitations, brain fog, fatigue, headaches, or muscle/joint/chest pain, I would find at least a few of them present and reporting for duty. Even at night, I am either awaken by joint pain or a racing heart, or drift into a fitful sleep scattered with dreams of palpitations, brain fog, fatigue and headaches. The symptoms are never quiet.

So on that busy day last week when I realized I was surrounded by silence, I didn’t know what to do. There’s no precedent, and as a lawyer (and an anal-retentive planner), I operate on precedent. I began to do what everyone who has been given a portion of their life back does – I planned how to live, and admittedly got a little ahead of myself. For the next hour, I looked at international airline tickets so I could see the world. I scoped concert ticket websites to make up for years of missed melodies. I thought about signing up for those obstacle course/costume party/cute dog/other ridiculously-fun-sounding 5k runs, going camping and attending every event that involves just standing around with friends. We’d start having kids right away, obviously. I even scheduled to start working 40 hour work weeks, because what those of us with chronic illnesses really want is just to be functioning members of society. Who occasionally lie on the beach with mai tais in hand, naturally.

But as I planned the rest of my life, I was struck with an immense and illogical sense of fear, which is ridiculous and embarrassing, but it was there nonetheless. Because I don’t know anymore how to not be sick.

Those of us with chronic illnesses often spout rousing battle cries like “I am not my illness”. And while a little saccharine, they’re true – before all this shit happened we were ordinary people who didn’t know everything about cardiac rhythms, sympathetic nervous systems, and insurance appeals. We danced instead of faltered, we read thrilling bestsellers instead of medical journals, and we spent money on vacations and experiences instead of invasive exams and promising treatments that only leave a trail of broken promises. That ordinary woman, the one behind the illness, is still there.

I just don’t know her anymore.

I have been dealing with one illness or another for most of my adult life, although the first ten years were easier than the last ten. I don’t remember what it’s like to not always be tired, or lightheaded, or to not have to double check that I have 15 items with me before leaving home. I don’t remember what it’s like to stand up and not worry about falling down, and I don’t know how to be a fully functioning member of society.

I don’t know how to live outside these four walls of my mobile prison.

Eventually I realized the idiocy behind my fear and resumed planning my life, determined that I would discover the woman without POTS, crash upon her shore, and claim her for myself. It would be a momentous discovery. One for the history books.

But even then, for a sick, sad moment, I was relieved when my symptoms returned an hour later. I felt whole again, restraints and all. Sometimes the four walls of our prison are more comforting than wide open spaces. Sometimes we fall in love with our captor.

Days later, after reflecting on the lunacy of my reaction, I remember what it felt like for that hour to plan the rest of my life. To get excited about the future. To be free. The next time the shackles are removed, even if again for just a few hours, you can find me lying on the beach with a mai tai in hand. Naturally.

“…because I’m running out of time at the very point I need the clock behind me. 
Alone in this room,
When nothing should be taking from the cleanness of the break I’m making.”
– Mesh, Four Walls

Smell ya later.
– Linds