Tuesday, July 8, 2014

You Can Check out Any Time You Like…

“Does Mitch’s left hand not work anymore?” our friend Amy whispered to Kim as we left the restaurant last weekend in Bangor.

“Why? Did he say something to you?” Kim responded.

“No, but I noticed that he didn’t move it at all during dinner.”

“Yeah, he can’t do much with that hand anymore.”

“Are you guys okay?” Amy asked, struggling to comprehend an entire limb simply written off.

“We’re alright. We just make adjustments and move on,” Kim explained.

Kim and I were well aware that I was no longer using my left hand, but we hadn’t thought of it as an issue to be noticed or not noticed by others. The hand is just another thing for us to deal with. It had been three or four months since we’d seen Dean and Amy, however, and this particular development stood out to them. I didn’t see that one coming, but in retrospect maybe I should have.

Bangor is a small city, pretty much in the center of Maine. Less than 40,000 people live there, but it has a world-class outdoor music venue, called Darlings Waterfront Pavilion, which holds 16,000 concertgoers. Darlings is a local auto dealership.

Come Sail Away – The Styx Anthology
Come Sail Away – The Styx Anthology (Photo credit: Wikipedia)
When the summer concert schedule came out earlier this year, I noticed that an event would be held on July 5, Kim and my wedding anniversary. The opening act would be Don Felder, lead guitarist from the Eagles, followed by Foreigner and then STYX – iconic music from our youth.

We purchased tickets and reserved a hotel room at the casino adjacent to the music venue. Dean and Amy were going to the concert too, so we met them for an early dinner, after which the conversation about my left hand ensued.

Kim and I were in a good mood as we looked forward to an evening of nostalgic music with old friends. I achieved almost rock-star status myself by spending as much time as I could in iBot balance mode. When the concertgoers studied me, many couldn’t believe what they were seeing – perhaps blaming it on the ganja, which was burning here and there throughout the venue. This was my first outing in the iBot since service had been discontinued. If it were to break down on this trip, there would be nobody for me to call. But the iBot was its usual, reliable self.

When we arrived at the mammoth outdoor venue, the first order of business was to confirm that I could actually get to my seat. We had “ADA tickets,” so we were optimistic. Indeed, the route to our section was easily navigable. In fact, we were in a prime location. A special wooden deck had been constructed for my crippled brethren and me. It was located in the center of the venue, and was raised slightly so there were no line of sight issues.

The second order of business was to evaluate the bathrooms, which consisted of a long row of porta-potties. I noticed that a couple of the porta-potties had handicapped emblems on the door. We did a trial run in one of them, and determined that it was too small to accommodate my iBot. This was a potentially serious problem.

I approached an usher to voice my dissatisfaction, albeit politely. He indicated that there were two even larger porta-potties at another part of the venue. I was skeptical, but we worked our way toward them. The usher was right. These units were roomy enough for the iBot. This success led directly to the third order of business – buying some ridiculously overpriced draft beers! If not for the bathroom accessibility, it would have been a dry concert for me.

In recent months I had been auditioning new MS symptoms, and this would be opening night for one of them. Of late, either one of my legs would occasionally go into a violent spasm as if I were trying to kick an invisible assailant, about five times per second for a period of five to ten seconds. Until the night of the concert, the only trigger had been when Kim was drying my legs off after a shower. We would watch the explosion of activity with my leg muscles, scratch our heads, and maybe even laugh a little in the privacy of our home.

But while I was in balance mode at the concert, with Amy and Kim in line for beer, I somehow triggered my left foot, and it went into one of those violent spasms. There were people all around. I was embarrassed and felt helpless. I was glad that nobody stared at me or tried to come to my rescue, which might have drawn a crowd. And thankfully, this event was more like five seconds long than ten. All I could do was wait for the spasm to run its course – the super cool dude in the iBot wheelchair brought back to earth. By the time Amy and Kim returned with the beer, everything was back to normal, and I didn’t even mention it to them.

Don Felder played classic Eagles songs, including Hotel California, and it was awe-inspiring. Foreigner and STYX were high-energy and played our favorite tunes from back in the day. I found myself singing along for three hours. I was only comfortable doing so because I knew no one could hear me.

After the concert, we parted ways with Dean and Amy, and Kim and I walked back to our hotel room and went to bed. This was no small task, as transferring me from wheelchair to bed without the benefit of my overhead lift system is cumbersome. But we managed and were soon asleep.

About two hours later, trouble began. I am fairly regular and almost never have the urgent need to use the toilet. For someone who has difficulty transferring, this is a bonus.

Kim describes the events in the middle of the night this way. I mumbled something along the lines of, “I’m too hot.” A moment later I said, “I don’t feel good.” My voice was so faint Kim held out hope that I was only talking in my sleep. A few more minutes passed by, and I was silent. She nodded back off to sleep. Then I said in a clear and strong voice, “I need to get to the toilet, right now!”

Kim sprang into action, but my legs were uncooperative. The discomfort I felt in my gut was apparently causing spasticity in my legs. This was different than the violent kicking spasm earlier, but more persistent. Both appendages were as stiff as bedposts, and stuck in the fully extended position – a symptom I’ve had for years, on and off. The harder Kim tried to bend my knees, the more my legs resisted. Eventually the spasms subsided on their own, and she wrestled me into the chair. I zipped to the accessible bathroom, and we managed to get me onto the throne before shit happened. But it was close.

Kim was a wash of sweat, and I thanked her for the heroic effort. Actually, I think it was more of congratulations than thanks, given what we had narrowly avoided.

After a while we reversed the process, but without the near panic of earlier. The rest of the night went well. After visiting the following morning with my brother Andy and his wife Karen, and then enjoying lunch with our friends Preston and Nancy, we returned home.

Traveling, even for one night, can be so taxing on us. But we’re glad we celebrated our anniversary this year at an awesome concert with great friends. The difficulties will be forgotten, but the pleasant memories will endure.

“You can check out any time you like, but you can never leave,” goes the Eagles classic hit.

Oh yeah I can leave. But not yet. Not by a long shot.

4 comments:

  1. Wow.....Highs and lows in this post. We too have the "leg-kicking" and James takes pills meant for Parkinson's.....but his kicking isn't so violent. Really sorry. I STRONGLY recommend that you two travel with a plastic bedpan (not one of those ridiculous teeny ones) to sidestep any hair-raising rushes to the bathroom at night. Kudos to you all for making the trip.

    Ginny

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  2. P.S. I am not implying that the bedpan is an experience to look forward to.....I just think it may soon become the only option. After our second bout of C Diff in a month, I myself am up for Bedpan Hostess of the Year 2014. If the ceremonies are held on the East Coast, I invite you and Kim to come sit at my table.......Ginny

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  3. You're both extraordinary.

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  4. Was just coming to recommend traveling with a bedpan, but James beat me to it. Amazon has a variety and there are a few that are almost comfortable. My hubby and I moved x-country and I had a middle of the midnight emergency in the hotel similar to yours. The pan did its duty while I did mine. Thank goodness we have great spouses and a wicked sense of humor through it all.

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