Part 2: One Small Sentence
Our last call to the diner involved a general neurologist and ~ not leading the witness. ~
In every other neurology appointment, we informed the doctors on where I’ve been, what was discussed and brought copies of test results, etc. This appointment would be very different. I would explain my symptoms, how long I’ve had them and then sit back. Nothing more. Nada. We’d let the doctor arrive at his own conclusion without being swayed by other opinions.
My doctor friend Col decided this was the plan of action we would take and I couldn’t have agreed more. This was a fabulous idea and I couldn’t wait for the appointment to get started. Today was going to be a very good day!
I’d walk into the examination room, get checked out and answer questions. This neurologist would finally see ~ what the others could not! He would give a definitive diagnosis, (preferably nothing too debilitating), then we could get the ball rolling with a treatment plan and/or cure before my symptoms progressed any further. Afterwards Col and I would have dinner downtown with our dear friend Nora, who worked nearby. We would probably dine el fresco since it was usually a gorgeous summertime day in the Windy City.
The ~ unsuspecting neurologist ~ walked in, asked me some questions, tested my reflexes, watched me walk, and said “I’m going to send in another doctor to see you,” all under 15 minutes. Wow, this was a new record, every other neurology appointment lasted a minimum of 1 - 2 hours or longer.
Two minutes, later the ~ other doctor ~ walked in, introduced himself and asked me the same questions the first doctor asked. This doctor is very personable and chatty and all the while he’s making small talk and testing my reflexes ~ I fail to notice ~ the ALS letters on his lab coat. For the life of me, I don’t know how.
It wasn’t until the small talk stopped and the doctor turned and said YOU HAVE ALS, that those 3 terrible letters jumped out at me. I heard my husband say “So, you’re telling me what my wife has is something like catching lightening in a bottle?” “Yes.” Like I’ve been saying, what are the odds?
The doctor kept talking but I stopped listening. I could not pull my eyes off of those terrible letters on his lab coat. My brain was like the ticker tape at the bottom of a news channel, no treatment, no cure, no remission. That was the crawl that was stuck on repeat inside my head. I walked into that room positive I would leave with a hopeful, treatable condition. A new lease on life after being on hold for three years. Instead, ALS slammed the door shut on my dreams.
“How long?” I asked and the doctor said “could be 3 years, could be 20” I don’t remember what, if anything, he said after that, because I’m pretty sure I was on my way to having an out of body experience.
You know how when people ask if you remember where you were when we landed on the moon and you remember ~ e x a c t l y ~ where you were? Well this was my moon landing, just as momentous, only no celebrations.
One small sentence for the neurologist. One giant sentence, of a different kind, for me.
Well, we got half of what we came for, a confirmed diagnosis. The other half, the treatment/cure half, doesn’t exist yet. But it’s coming, and when it does, it will also benefit Alzheimer’s, ~ Parkinson’s, ~ Muscular Dystrophy, ~ MS ~ and others.
So, there we were, the three of us, my husband, Col and me. It was always the 3 of us. Col went to every single appointment. She took copious notes and her wheels were always turning, planning the next two or three steps ahead of who we should see and what to try next and ~ who else do you know ~ who does that? Only someone ~ so wonderful ~ you’ll never be able to thank them enough if you live to be 100, that’s who.
The drive back home to the suburbs was fairly quiet. Dinner with Col and Nora wasn’t happening now. Not really up for eating and laughing. Anytime my friends and I got together we laughed our sides off. Not today.
My head was killing me and I needed to turn off the ~ sunny side of the street ~ part of me. Now was not the time to give myself the old college pep talk. I had to s h u t ~ it ~ d o w n the same way this last doctor sh u t ~ it ~ d o w n for me. He dashed my plans and dreams, all in one fell swoop, with just two consonants and a vowel. I needed to get home and sit with my ALS-self.
In the evenings after my husband went upstairs I stayed downstairs. I went into the office, searched ‘people living with ALS’ on YouTube and watched endless hours of these videos, for months on end. The good, the bad and the terribly sad. I couldn’t get enough of this surreal way of life that I would one day be a part of.
I quickly learned that my best days are the here and now days, the days right in front of me. I needed to appreciate all that I can do. God never whispered this lesson; He hit me over the head with it.
Every neurology waiting room was a Master Class in perspective. One glance around the room was all it took to see how blessed I already was. I never wanted to look back and think I shoulda, woulda, coulda.
Gratitude is a major part of my story. I had a husband offering the world, whatever it would take to keep me going, daughters acting like personal research assistants, besties in the medical field cashing in all their favors, and family, friends and neighbors offering to do anything and everything; all I had to do was name it.
Irony is the other part of my story. Gratitude set the stage, but irony stole the show.
You might want to have a chair handy for my next post…