Waiting for the Whistle

In the game of life, there are no time-outs. 

There are no water breaks or substitutions. 

(Not even a complimentary orange slice to be found. A sham!) 

The referee doesn't blow the whistle at the first clap of thunder. There is no locker room to wait out the storm. 

In life, you stand in the storm and get drenched. 

And friends, I have to tell you, I am soaked to the bone. 

I have attempted to write this blog post a minimum of 17 times over the past month. Similar to trying to merge 5 lanes of traffic at once, when there is so much to say, the words come to a screeching halt. The proverbial bottleneck of medical reporting.

In the past month, I have received medical care in Massachusetts, Pennsylvania, Maryland, and Virginia. Next month, I will add Ohio to my list.

(Sidenote, how many states do you have to go to before you can warrant the purchase of a “Restarting My Hard Drive Tour" t-shirt?! And can they be sponsored by the bedazzler?)

I digress. 

My beloved neurologist called last week. (That’s not sarcasm, she really is the greatest) 

The conversation started with, "I didn't want to call you."

(Friendly hint, that's generally not a sign of free puppies. Or cookies. Or Ellen Degeneres showing up at my door. In short, it's not shorthand for all things magical.)

She went on to describe the results of my brain MRI and muscle biopsy. Two tests that were done to look for diagnostic clues, straight lines to connect the scattered dots. The tests were supposed to provide much needed information for the next steps. After she gave me the low down, I paused in my frantic note taking. 

"So, let me make sure I have this correct. Two areas of my brain are atrophying. My muscle biopsy showed that I have moderately severe neuromuscular degeneration with associated sclerosis. And on both accounts, we have no idea why."

She paused and gently sighed. 

"Yes.”

The week went on to include a weakened immune system from the immunologist, a "fancy" new diagnosis from the urologist, dissolvable stitches choosing not to dissolve from the surgeon, and a new type of tachycardia from the cardiologist.

Cliff Notes:

1. People seem surprised over the weakened immune system situation. I’m not sure where they have been the last 5 years of my life.
2. I now have a urologist. I also have a pacemaker. And I’m retired. You draw your own conclusions. 
3. How do we feel about, "Wow, I’ve never seen that before!” in tattoo format? 
4. There is only one logical explanation for my new tachycardia. Penelope enjoys a good dance party. Obviously.

My medical shenanigans always tend to come in waves. I'm not really sure why, but there have always been somewhat predictable ebbs and flows. I rarely have one doctors appointment all by its lonesome on the calendar, and it is an unusual occurrence to be waiting for just one test result. They come in waves. 

This past one, however, was a tidal wave. 

And after weeks on end of 3 hour appointments, “getting reacquainted with the OR,” countless blood draws, lengthy “discussions” with my insurance company, travel by plane, train, and automobile, and general medical debauchery, I find myself standing in the middle of the field, chest heaving, and simply drenched. 

I keep waiting for a referee to run into my living room and loudly declare a time-out. Just a two minute break to catch my breath (and find a darn orange slice.)

But there are no time-outs.

This is it, the real deal, no whistles or striped shirts involved.

Some days, I want to put myself on the bench. I want to go back to the locker room, change into dry clothes, and call it a day.

But I can’t. 

I won’t.

I don’t know why my hard drive crashed. I don’t know what piece of the puzzle we are all so desperately missing. I don’t know why I’m on this journey.

I don't know a lot of things.

The only thing I do know for sure is that only I decide. 

I can hide under the bleachers, or I can shake it off and get back on the field (sequined sweatband optional.)

I have a life to live. It's quite the gift.

My favorite college professor had a small poster hanging in her office. I'm sure I've mentioned it before - I saw it nearly every day. The words resonated with me then, almost as much as they do now.

"The race is not to the swift, but to those who keep on running."

I'm tired.

I'm drenched.
I'm dodging lightening bolts.
And, I'm running. 

Let's do this, friends. Game on.