What I Almost Forgot

Some­times I think I must be part of some gigan­tic scav­enger hunt.

As if the next big real­i­ty series is going to be The Grand Med­ical Adventure.

The con­tes­tants search for a diag­no­sis (bonus points for guid­ance and treat­ment), and leave as many clues as pos­si­ble along the way, stop­ping at every med­ical facil­i­ty in sight.

That MUST be what I’m doing…right? Any minute now, Ryan Seacrest will pop up behind that vacant chair in the wait­ing room, I’m sure of it.

My clue-drop­ping is some­what alarm­ing, if you think about it.

There’s a thy­roid and sali­vary gland sit­ting on a shelf in Rochester, Minnesota.

A per­fect­ly-formed gas­tric fis­tu­la resid­ing in Fairfax.

A chunk of a hive hang­ing out in Chantilly.

Four pieces of my left bicep tak­ing up room in Baltimore.

A swab of my stom­ach lives in Philadel­phia, Fair­fax, Bal­ti­more, AND Rochester.

An unfath­omable amount of blood and urine resides in rough­ly ¹⁄₄ of the Unit­ed States.

And I most recent­ly left 44 vials of blood, a giant jug o’urine, and 3 chunks of my skin in Cleve­land, Ohio.

And let’s be hon­est. I prob­a­bly for­got something.
(Maybe Pene­lope the Pace­mak­er is actu­al­ly a track­er for the producers?!)

I’m going to NAIL this real­i­ty series.

Some­one recent­ly asked if I ever get tired of searching.

Obvi­ous­ly I looked at them like they had 7 heads.
And 4 noses.
And pos­si­bly a tentacle.

(Ok, def­i­nite­ly a tentacle).

And I kind of wish I still had that giant jug o’urine in my hand.

Just say­ing.

(Insert angel­ic face here…)

One would think with all of the clues that I have left all over the coun­try, that I would have new infor­ma­tion, but I don’t. In fact, all that result­ed from 44 vials of blood was, “This is extreme­ly rare. I can’t explain it.”

Oh but if I had a dol­lar for every time…

Some­times I feel like all I do is give pieces of myself away, far beyond my afore­men­tioned organs and blood — my career, my plans for a fam­i­ly, my sav­ings, my voice, thoughts of trav­el, hopes and dreams. It is easy to get washed ashore by the tidal wave of loss that comes with chron­ic ill­ness, par­tic­u­lar­ly of the med­ical mys­tery variety.

And no mat­ter how hard you fight against the cur­rent, you will always feel like you are being pushed back. As if the uni­verse is say­ing, “sit down child, this does­n’t con­cern you.”

I sup­pose in some ways, the uni­verse is right. I can­not out­smart or out­mus­cle the universe.

The ques­tion is, whether or not I can learn to move with it. In tan­dem on a bicy­cle built for two.

I don’t have the lux­u­ry of giv­ing up. The choice to stop search­ing and try­ing to under­stand the unex­plain­able is not an option, in light of liv­ing the most pas­sion­ate exis­tence I can. Putting my all into my life? It’s a no-brainer.

I recent­ly had an entire day with noth­ing planned — no appoint­ments, no busi­ness meet­ings, no labs, noth­ing. It was, per­haps, the first of its kind in quite some time. At first I felt an almost bewil­dered sense of con­fu­sion — what IS this mag­i­cal place? What do I DO here? Mr. Restart­ing My Hard Dri­ve was away, so I grabbed my green juice and start­ed the day in my office, decid­ing that the only log­i­cal use of my alone time was sort­ing med­ical records, pay­ing bills, and work­ing on my busi­ness. It was a beau­ti­ful sun­ny Sat­ur­day, and I was wrestling with an over­flow­ing pile of papers.

I’m not sure what made me pause, but in one swift move, I put the papers back on my desk, grabbed my keys, and walked out the front door with­out look­ing back. I wan­dered lazi­ly through a farm­ers mar­ket, oogling at the beau­ti­ful fruits and veg­eta­bles, fresh eggs and hon­eys. I chat­ted with my favorite farmer, and pho­tographed exquis­ite pur­ple beans. I came home and cooked for hours — almond but­ter, peanut but­ter, coconut wraps, kom­bucha, grain-free dough­nuts, and more. I lis­tened to music. I took breaks to sit on the deck in the sun­shine with a glass of kom­bucha (and a heat­ing pad for my sore shoul­ders). I went for a qui­et walk, and watched Ellen and Down­ton Abbey (obvi­ous­ly). I went to bed ear­ly, curled up with a book.

A few days lat­er, I spon­ta­neous­ly moved all of my appoint­ments and spent a day escap­ing life at my favorite place on earth.

There was a lot of this:

These days remind­ed me not only of the pure joy in the sim­ple things, but that there is one tremen­dous­ly impor­tant thing that I haven’t giv­en away.

I haven’t giv­en up what makes me, me.

It is so easy to for­get, in the tumul­tuous sea of med­ical test­ing and trav­el, legal pro­ceed­ings and grow­ing a busi­ness, that under­neath all of it — beneath the test tubes and nee­dles, papers and unex­plained ques­tions, there is a per­son. A liv­ing, breath­ing, human being.

Not a statistic.
Not a med­ical record number.
A person.

In all of the chaos of the last five years, I near­ly for­got her. I near­ly gave her away, unknow­ing­ly allow­ing the ocean of ques­tions to wash her to sea.

I do not have the option of leav­ing The Grand Med­ical Adven­ture. It is my day-in, and day-out. But it’s not who I am.

My name is Lydia. I love sun­shine and hors­es, fresh food and music. I day­dream about trav­el­ing with my hus­band, and I believe stars are there for wish­ing. I love to hike and bike and walk and swim, and I am my very best self in the moun­tains. I love to read and play board games on a rainy day, and I nev­er knew how much I need­ed to write, to cook, to teach, to cre­ate. I believe in the heal­ing pow­er of food and lifestyle, and I adore cook­ing for those I love. I write in cur­sive, with fun pens and mark­ers, and I have an exten­sive doo­dling prac­tice. My fam­i­ly and friends are my great­est gift. I dream about hav­ing a caramel-col­ored labradoo­dle and writ­ing a book. I love to laugh.

I had for­got­ten, but now I remember.

I am not an unex­plained question.
I am not a binder of med­ical records, nor a pile of paperwork.
I am not organs on a shelf.

I can­not leave the ocean, but I can always splash in the waves.