Tuesday, March 5, 2013
Same song...seven hundredth verse?
Thomas Edison said, "I have not failed. I've just found 10,000 ways that won't work."
Let me assure you friends, that despite the fact that this was said nearly 100 years ago, it was said entirely in reference to the life and times of yours truly.
You see, I've developed a pattern.
Step 1: Receive diagnosis for something bizarre and unusual with no known cause
Step 2: Spend copious amounts of time researching said rare malady
Step 3: Discuss treatment options
Step 4: Discover new allergy from seemingly innocuous treatment options
Step 5: Adjust to new normal with non-functioning [insert organ name here]
Step 6: Pour heart out on blog sharing new level of deep acceptance
Step 7: Repeat Step 1
I am nothing if not consistent.
Last week I headed up to Philadelphia for a few days of medical testing bliss and wonderment. It had been 6 whole weeks since I had traveled for a medical excursion, so it was high time that I pack my bags and skedaddle out the door.
I started the day with an esophageal manometry. If you have never had the incredible privilege of experiencing this tubular delight, it involves a tube snaking its way from your nose all the way into your upper small intestine. And just so you get to enjoy every minute, you are completely awake and not at all sedated. In a nutshell, the manometry measures how well your esophagus works. I have actually had this gem of a test before, in 2011, so I knew exactly what to expect...the wonderful doctor* who administered the test agreed with my analysis that ignorance is, in fact, bliss.
*I'd like to give a major shout out to the doctor who administered the manometry. She shared that she recently asked a friend to give her the test so she knew exactly what it felt like. Let me be clear friends, this does NOT happen often and is absolutely to be commended.
After 15-20 minutes of getting up close and personal with my gag reflex, I was sent on my merry way and headed to the rehabilitation section of Jefferson Hospital's ENT (ear, nose and throat) department. There I met with a Speech Language Pathologist who focuses solely on the singing voice. You may recall from this post that singing has shaped a giant portion of my life so far, and I miss it tremendously. At this point, I have had several doctors tell me that I will never sing again...so to be honest, I was somewhat dreading having to hear that news all over again. Luckily, I didn't have to! The voice therapist is incredible and after reviewing my films, listening to me croak in rhythm with her piano and analyzing every small detail of my breathing pattern, she placed me in the "not impossible" category.
You see, your vocal chords have the ability to lengthen and shorten, as well as open and close. Mine lengthen and shorten, but don't close.
Hence part of the reason that speaking is exhausting and singing is not even an option - I absolutely never have enough air to do so.
Now, I'm not a doctor, but I do glean that oxygen is somewhat important for basic life skills.
Placing myself in the "not impossible" category may not seem like much, but to me it is a giant breath (ha...get it...!) of hope. I have a whole heck of a lot of hard work in front of me, but all is not definitively lost and the sense of relief is palpable.
I have written before about my quest to limit how I label things as good, bad or indifferent. As humans, we like to compartmentalize everything and I find it exhausting. In the medical world, one second something is great and the next it is dreadful. If you wait five minutes, it might get upgraded to passable, or it might get much worse. It is a constant piggy-back ride on a super-exuberant Tigger.
However, it is one thing to talk about how I will limit my labeling...it is another thing to actually do it.
I learned my lesson on Friday, when I walked into my next appointment, riding on the euphoria of my voice therapy, only to find out that the steroid injections into my larynx haven't helped at all so far and my esophagus is also now partially paralyzed.
Ya know, just for kicks.
It goes without saying that the "why" question is, as usual, impossible to answer. Come on people, I stick with a pattern. Just refer to step 1.
So now I go back to my routine.
I'll continuing following steps 1-7.
I'll figure out what to do with my darling esophagus...
and, let's be honest, I'll likely also figure out what not to do.
And all the while, the world will continue to noodle the grand mystery that is my body.
But friends, let me just be clear. I'm trusting Edison on this one.
No matter whether it is 10,000 tries or 1,000,000.
One of these days?
The lightbulb is finally going to go on.