After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

The Crux of The Matter

The Crux of The Matter

The most heart-crushing, soul-center truth about living as a medical mystery is this: you don’t know what you do know, and you don’t know what you don’t know. In other words: we, (the medical community), can not state that we have identified every body system, every element that does not work, or identify all of the elements that do work, and have no idea as to the initial cause or primary disease.

Hasn’t everything possible been tested?

Yes, and apparently, no. Testing changes, results change based on the conditions of the tests… New tests are ordered based on new or revised results, and other tests are canceled based on said results.

Yet the tests themselves do not contain the answers.

Why? Because the results are contradictory, conclusive until an element is inconclusive.

Am I speaking in riddles?

No, but my body is. Except, if all the words were contained to a page, then you could, with the most brilliant minds, figure it out. That’s my problem: every doctor that I have seen in the last few years, literally considered in the top 10 of the U.S. in their respective specialties, all admit that we don’t have all the words, let alone in any order or structure.

And that, after 16 years of searching, is defeating.

Think about it; spending 16 years of your life just trying to identify all the pieces, trying to identify the whole, and yet you are no more closer after all these years than you were when you started.

That’s the defeatist, angry, devastated voice. That lasts for about, oh, a minute a half.

Then stubborn kicks in. Because, if there is one thing I refuse to do is, let my life seem to pass me by, as if it didn’t count. I’m not someone that believes in karma, so for me, this is my one shot. (For all those Hamilton lovers, yes, I borrowed that line.).

It’s my life, and I just can’t accept the fact that I may never know what my body has been struggling against for more than half my life, forget the how it happened, or what it might be named. I have fought all of these years with the single mentality that one day, somehow, I will recover either partially or fully. If that’s been a delusion, it’s one my doctor’s, (every single one), have fed me.

Until now.

Somewhere in the last year or two the goal changed for all my medical doctors and consultants; an acceptance emerged that there will never be an over all answer; all we can hope for is, at best, further clarity of the symptoms and secondary diseases. Ironically my being featured in the Christmas Wish article, looking for someone else with a medical case like mine, seemed to have strengthened their mindset—as proof they had done everything—rather than diminish it.

The funny thing is that no one seemed to have told me of the shift; it just occurred. Like my illness. I was healthy until I wasn’t. When that moment happened is a blurred line, most likely never to be known.

Once again, I’m supposed to accept that too. There’s just one little hitch: me. I am a rational human being who hates puzzles and can’t rest until they’re solved. Requires work? Not a problem. I love spreadsheets; endless data doesn’t overwhelm me as long as I can chart, sort, and file it; finding connections, a needle in a haystack, is fun as long as there is an ending.

After 16 years, I am being prepared to stop looking for answers. Not the ending I ever bet on.  And yet, my fear is that once I accept this change with all the emotions in it’s wake, that then somehow we stumble upon a whole new discovery, and the quest is back on. An emotional whiplash I don’t think I can endure. Why? Because I have been there, done that, too.

And that’s the crux of having a mystery illness: you don’t have a clue of what you do know, what you don’t know, and what the hell you should do about it.


Play Date

Play Date

Irony: My Ski Lounger Experience

Irony: My Ski Lounger Experience