I’ve been spending a lot of time lost in thought lately. In fact, I’d say most of October was spent percolating thoughts between my two ears. I’ve always been a fairly introspective and reflective person, but this has been on a new level — truly lost in thought.
I’ve been noodling (totally a verb) and I believe there are many contributing factors — first, I spend an absurd amount of time waiting — on hold with the medical provider/disability rep/feeding tube nurse of the day, in waiting rooms, for my IV to finish, to eat after medications, for clients, the list goes on and on. Pure, uninterrupted waiting.
Secondly, my treatment has caused a lovely case of tinnitus — better known as constant ringing in my ears. Yes friends, I may be lost in thought because I am literally trapped in my own head. Think hundreds of crickets at a ceaseless chirp, 24 hours a day, 7 days a week. Cricketpalooza 2013.
Lastly, and likely the most pertinent, is the fact that whatever shreds of memory, focus and attention I had before, have packed their bags and gone on a long vacation (They better not be on a giraffe safari without me…) A common “bonus gift” of tick borne treatment that affects your brain stem is memory loss. And lack of focus. And inability to sustain attention. And…oh, that’s a nice dog.
I think I want a cup of tea.
No, but really — think about it. How many 5K runs and fundraisers do you see for tick borne disease? Lyme Disease is the 7th most common nationally recognized disease, and I can’t think of a single bake sale (and I don’t forget a good bake sale.)
Why, you may ask?
Because no one would finish the race. And I have it on good authority that baked goods don’t bake in an oven that’s not turned on (insert sheepish face here…).
Inevitably if “my people” actually showed up for a race, at least half would forget sneakers. And of the ones who actually started the race, most would forget what they were doing mid run, some would lose their balance and fall over, or despite clearly marked race boundaries, almost all would certainly need both a GPS and a guide to finish.
From a person who started this journey as type A and a half, this is the real deal. Last week I walked up two flights of stairs, only to get there and have absolutely no clue why I was there. And let me assure you that someone with ridiculous fatigue and swollen joints does not walk up two flights of stairs unless she has a really good reason.
Ya know, like a cookie. Or a pony.
But regardless of the cause, I have spent a lot of time alone with my brain, and I must admit that what I found has really rocked me.
Adjusting to a “new normal” is hardly anything novel at this point. Dealing with new medications, and the baggage of allergies and side effects that comes with them is old hat. I collect diseases like cookbooks and many friends and family members turn to me for medical advice, because, frankly, I don’t charge a co-pay!
So why have the past 2 months been among the hardest?
Sure, life has been challenging physically, but I mean difficult in the “who am I, what am I doing here, and what on earth happened to my body?” department.
I’ve been noodling these thoughts for weeks. I would jot down a random thought here and there, but they never connected. Or maybe they did, but I got distracted. There are pretty things all around, after all.
But finally, while driving down the gorgeous, quiet roads to get my infusion this week, it dawned on me.
I feel like I’m “sick.”
For the first time in my life, I feel…ill.
And those thoughts both terrify and annoy me.
It may seem bizarre to hear me say that I’ve never felt ill before, given the stories that lie within the posts on this blog. But these stories are just my obstacles, and I believe that everyone has obstacles. Everyone has to run the steeplechase instead of jogging casually down the trail. Some obstacles are move obvious than others, but no one gets a free pass. These obstacles shape who we are and how we look at the world, and everyone faces them, in some way shape or form.
So even though I’ve spent the last 3 years chasing an undiagnosed disease that has had a hot mess field day with my body, I never felt like I couldn’t simply adjust to the new obstacle and move forward. Besides, I always loved the hurdles.
But what about when the hurdle morphs into a giant rock wall surrounded by a mud pit?
I know the world of chronic disease inside and out. I know how to manage my symptoms and I know how to step back and restart a bit when the plan goes off course. I know that there is no “cure” for many facets of my disease collection and I have accepted that and learned to make a life of health and happiness with my new body. I learned how to make it work, as long as I followed a fairly strict set of personally-mandated guidelines.
But, this new world? This new world is an obstacle that I don’t know at all. This new world takes my personally-mandated guidelines and throws them back in my face.
In this new world, everything is inside out and upside down. I keep waiting for the Great and Powerful Oz to jump out from behind my curtain, or for Willy Wonka to show up at my door in a glass elevator. (And though it’s a close call as both would involve me feeling like a giant among the miniature people, I’d prefer Oz…because he comes with green horses wearing coke bottle glasses and I’m pretty sure Willy Wonka is just way too creepy.)
Welcome to a moment in my brain.
So, I’ve somehow firmly wedged myself between the worlds of acute and chronic illness.
Ya know, “Acunic” or, “Chrute.”
I imagine my life right now is somewhat like driving in England. You have to navigate the same life you’ve been living, but from a completely different vantage point. And let me assure you, my friends, that there are no guide books for the Land In Between. When the chronic bus and the acute train collide and cause a giant wreck, State Farm does not just appear to help you pick up the pieces. (Pshah. And they claim to be a good neighbor.)
But I’ve decided, during my 234028304823 moments lost in thought, that it doesn’t really matter if I’m “sick” or not. It doesn’t matter that my white cell count drops like the Tower of Terror. It doesn’t matter what adjective is given to me by myself, a doctor, or really anyone else for that matter. Though this Land In Between is new, and certainly challenging, it is just another obstacle, and I’ll get through it like we all do — one step at a time.
In many ways, I think life is like one big scavenger hunt — just when you get to point A, you have to jump over a rushing river and find point B, only to find out that point C is at the top of a mountain that you have to walk up backwards. The point is that you keep going.
So though it may take me some time, the only thing I really have to do is keep going. Step by step, no matter how slow, eventually I’ll find the next point on the scavenger hunt.
Now more importantly, does anyone know why I’m upstairs again?