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.
(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.
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.