reflections on a decade…

This week is my decade POTSaversary. Ten years ago from Tuesday (2/16), after undergoing a brutal tilt table test, I was finally diagnosed with POTS. At that point I had been actively seeking a diagnosis for two years, if you count from the date of my first loss of consciousness and ambulance ride, or five years, if you count from the date I first had to (temporarily) drop out of law school, or ten years, if you count from the date I first sat in a cardiologist’s office with unexplained symptoms.

For the couple years prior to diagnosis, and the couple years after, life was hard. Physically, I was a mess. Sometimes I had to crawl the 15 feet from my bedroom to the bathroom because I was too dizzy to walk. Even when I finally went back to work part-time, I made our assistant bring me documents off the printer – I was too scared to walk across the room. I was constantly afraid of losing consciousness, because at the time, it was a legitimate concern. For a handful of days every couple of weeks, I alternated between lying in bed with a migraine or vomiting in the toilet from the pain.

But even more than the physical toll, I was unprepared for the emotional baggage. I didn’t know how to express what I was feeling, or who to express it to. So, over a year after getting diagnosed and reading other chronic illness blogs, I published my first post on this blog in June 2012. I always expected this blog would just be an outlet for any experiences that I didn’t know how to share publicly. I never expected anyone to read it. Most people who know me think I’m a private person, but I’m not. I just don’t know how to talk about myself, and I’m pretty sure my latest blood results or genetic theories aren’t hefty topics of conversation. It’s not an issue about being private or shy, it’s an issue of not being confident that my life is worth discussing. I actually enjoy talking about my health, and this blog allowed me to do that anonymously without worrying about how it would be received. It also helped me meet others with chronic illnesses, new friends who I will sadly never meet in person. By the time I stepped out from behind the curtain and told people in my real life about this blog, I no longer cared if it was worth reading.

And in the beginning, having the blog helped a lot. Doctors and medical journals and WebMD prepare you for some of the physical manifestations of chronic illness, but no one warns you about the sense of loss and the emptiness. Chronic illness wrecks you, but I was unprepared for the wreckage. It’s the feeling of losing everything without actually knowing what you have lost. It tears you limb from limb, discarding the pieces, and leaves you in a smoldering heap. But out of that wreckage you learn to rise, broken but ablaze, like a phoenix from ash.

For the first several years after diagnosis, I lived under the dreamy spell of “somedays”. It was okay if I couldn’t climb mountains or pursue passions or work steady hours or travel the world or go to a fucking mall on my own because – someday – I would. Someday I would be pretty again and not haunted by droopy eyes and sagging skin. Someday I would be fun again, and not always relishing the past and in bed by 10. Someday I would look back with vague familiarity at the sick girl I once was with a detached appreciation for what she experienced. Someday I would climb that mountain. I would have that family. I would make my people proud.

Life was bearable under the illusion of “somedays”. I just had to be patient. But here’s the thing, friends. Somedays are infinite. Actual days have a shelf-life. And they will expire.

When the realization sunk it that there are no “somedays”, it was difficult to imagine that there would ever be life events worth celebrating. I’m unlikely to ever get a promotion with all of the time I take off of my already part-time job for sick days or medical appointments. I won’t be running any half marathons. There will be no graduation celebrations for the kids I don’t have.

No one writes in obituaries or on tombstones about the time we stood in line at the DMV for 15 minutes, unattended, and didn’t lose consciousness. We don’t celebrate going months without vomiting, or finding a new medication that eases the pain. Getting to where I am today – able to work part-time, exercise, and go to a store alone – is a much greater accomplishment that when I graduated law school, but I don’t have a degree on my wall that shows that.

But our lives are our own, and we get to determine what we celebrate. And if getting out of bed everyday for a week or going to a party (post-pandemic, of course) in your new wheelchair is your accomplishment, then fucking celebrate it. Because the real challenge isn’t living your life with a chronic illness, it’s living your life in spite of it.

I don’t hate POTS, or mast cell, for that matter, although neuropathy can be a bit of a whore at times. For a while I was convinced that my life would be so much better without them, but I don’t know that. All I can say for certain is that it would be different.

I tried for so long to make sense of everything, but maybe not everything makes sense. I don’t believe I developed chronic illnesses because I did something wrong or because I’m being punished. I don’t think it’s part of some grandiose plan the universe has. I think some things just are. We all bear the burden of our own baggage, and we’re all constantly searching for ways to unpack a few items and lighten the load.

Having chronic illnesses hasn’t made me a better person. I’m still just as selfish, judgmental, and afraid of my own shadow as I have always been. It didn’t teach me to appreciate every day because, frankly, some days are just shit, with or without being sick. Ten years of having chronic illnesses has taught me that we’re all just people with baggage, connected by our stories weaved through common threads of love and acceptance and the need to fill the holes in our hearts broken open by loss and the harsh reality that things are never as they seem. It has taught me that all of us have stories that need to be told.

Not because the stories might help others going through the same thing. Not because they shine light on our plight. Not because it helps us understand each other. But simply because we need to tell them.

Thank you for allowing me to share mine for the past ten years. Here’s to another decade of trying to figure this shit out.

“We are all, in the private kingdom of our hearts, desperate for the company of a wise, true friend. Someone who isn’t embarrassed by our emotions, or her own, who recognizes that life is short and all that we have to offer, in the end, is love.” – Steve Almond

Smell ya later.
– Linds