The Land In Between

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 7^th 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.)

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?