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.
People.
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.)
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?
