The Space Between (10/5/16)

Yesterday I was the lucky recipient of a fun-filled five hour excursion to the infusion room at a world renowned university hospital! What did I do to earn this multi-hour endurance test in a windowless room in the bowels of a picturesque northern California town? Well, for starters, I’m not getting better.

You would think that this would be par for the course for a chronically ill person that has been battling one thing or another for the past two decades, but, alas it is not. The further down this rabbit hole I travel, the more I learn about hospitals, tests, cutting edge procedures and what the medical profession will do when there is no clear cut cure for the rare disease that inhabits my body.

It has been a year and a half since the tumor was removed from my pituitary and yet things have not yet gone back to where they should be. This is my third recurrence of Cushing’s Disease, and I thought I had been through all of the pokes and prods, and labs and injections (not to mention neurosurgeries) that went along with the treatment of this wretched disease, but it turns out there were new things on the horizon. After all, upon the completion of my first two (also successful) surgeries, I slowly, but surely, got better.

This time wellness eludes me.

In fact, in hindsight, my health had been deteriorating for some time before my third diagnosis, and through some combination of determination, pain medication and a healthy assist from friends and family, I was able to continue living my life—albeit a pared down version, teetering precariously on the brink of collapse.

All this brings me to yesterday’s 5 hour test. It was not the worst I have encountered, but it was uncomfortable and it gave me plenty of time to reflect on the current state of my life. I realized that I was hoping that this test would come back positive. That it would give me a reason why, a sliver of hope, a chance of some kind of recovery.

It is a strange place to be, wishing for something to be wrong with you. On its face it reads like an act of self sabotage. Why would I want to add another diagnosis, another lifelong medication, another bullet to the list of the ways my body had veered off course?

In my experience though, it’s sometimes harder to be in the gray space of not knowing. We don’t wish for ill health, but hope for an answer as to why things are going awry and ultimately a plan to treat, or in many cases, manage the litany of problems that arise during chronic illness.

Back in 1999, just before I was first diagnosed with Cushing’s, I was overwhelmed by so many symptoms and the constant unrelenting pain that went with it. Doctor after doctor ran tests, then dismissed me from their care, referring me to entirely new specialties to begin the process of questionnaires, reciting of my health history and testing all over again. It was exhausting and scary. Something was wrong but we didn’t have a name for it, and with no name it was a series of shots in the dark, combatted only with medication and and procedures to try to manage my pain. When a diagnosis was finally reached, my sense of relief far outweighed my fear of surgeries. recovery and treating my rare disease. Relief in the form of knowing that there was a reason why.

And that’s where I find myself now, in the purgatory between knowing and diagnosis. The uncomfortable space that lies somewhere between wishing it so and dreading another label to add the list of maladies that comprise the fabric of my ill-health. It’s place that I have been to many times, but it never gets any easier there.

So I’ll wait. And hope. And never give up on my chance to move forward.