Do the Hokey Pokey

About a week and a half after being admitted into the Vancouver General Hospital ICU, Isabelle, Jim, and I had started to form a routine. Jim’s condition was stable and unchanging, Isabelle and I had settled into our accommodations, friends and family had been informed, and we fell into a rhythm.  Isabelle and I would coordinate and take “shifts” at the hospital to be with Jim and entertain him, wipe his eyes, scratch his head when an itch came up and help communicate between nurses and doctors with our spelling system when required. The previous week had been hectic and chaotic with endless meetings, tests, and on top of it all Jim being quarantined for the better part of a week due to strict hospital procedures for patients arriving from international or “exotic” locations that might be carrying unknown airborne illnesses or contaminants. By comparison, the routine checkups and check-ins by doctors and nurses in the ICU seemed almost boring.

Although no official prognosis had been given regarding Jim’s condition he had yet to regain any movement or sensation below the shoulder level despite the fact that the doctors had been raising his blood pressure for the previous week since research indicated high blood pressure in the first week following a spinal cord injury could aid in the recovery of movement.  The doctor came by midway through our second week at VGH to inform us that they would no longer be raising Jim’s blood pressure to encourage recovery since the research indicated this was only useful for 7-10 days after the accident. They said that although anything could happen, most spinal cord patients regained movement during the first week or so of recovery if they were going to regain anything at all. They assured us that there were plenty of cases of patients who regained movement outside of this window, but that the odds became slimmer as time passed from the date of injury.  Reading between the lines, it sounded a lot like you should start coming to grips with being a quadriplegic, because that’s probably how this is going to pan out. These words echoed in my head for days to follow. I tried to remain optimistic, tried to assure myself and Jim that anything could happen, but as time wore on, it seemed the odds were against us.

Throughout the following days at VGH, nurses would come by to check in on Jim and run routine checks of his blood pressure, heart rate, and many other readings. On top of these checks they would run a movement and sensitivity test to check for any new movement or sensation. They would use a needle and a feather to prick and tickle Jim at different locations on his body and ask him if he could feel them. Sometimes Jim would shake his head, close his eyes, and mouth the word “maybe”, but most often it was a resigned and frustrated no. The nurse would always cheerfully say “okay” and make a simple note on their clipboard. The nurse would also ask Jim to perform various movements such as open and close his hands, raise his arms and legs, wiggle his toes and other things. I always held my breath during these tests, but they always seemed fruitless. The nurses were always very cheerful and said things like, “Okay, now try this” when nothing happened, or in a soft kind voice “very good, now do this”. After all possible movements had been attempted, and Jim had been pricked and tickled on every inch of his body the nurse would tick a box on her clipboard, smile, and leave. This went on every day, sometimes several times throughout the day.

One day while Isabelle was out at lunch and Jim and I were listening to a podcast together in the ICU the nurse came by to run this sensitivity and movement test. I paused the podcast and moved aside to let the nurse through to carry out what I now considered to be a formality. The nurse poked and tickled Jim to no avail and moved on to the movement test. Jim closed his eyes and clenched his teeth as he strained to open and close his hands, lift his arms, but his limbs continued to hang in the nurse’s hand limp and motionless. I was shifting closer to the bed waiting for the nurse to finish and I could resume the podcast, and she too seemed eager to complete this test that was obviously leading nowhere. Finally as she was working her way down her clipboard ticking a box every time my dad failed to move a limb she said “Okay, now wiggle your toes for me”. Her pen stood poised ready to tick the negatory box as both mine and her eyes glanced towards Jim’s feet. His left foot hung limply on the bed motionless, but his right foot seemed to twitch ever so slightly. Both mine and the nurses brows furrowed as we tried to make sense about what we had just seen. Had we seen it? Did we both simply imagine it? The nurse moved slightly closer towards Jim’s feet and said “Do that again please”. Jim closed his eyes and furrowed his brow in concentration. There it was again. Ever so slight, but definitely there. His big toe on his right foot definitively moved down and up again. Hardly an energetic wiggle, but definitely a movement.  I laughed and smiled as Jim anxiously looked back and forth between me and the nurse – not knowing and unable to see what we had seen. I excitedly told him he was wiggling his toe, and he tried again this time straining his neck to try and look down at his toes while he did so. The nurse smiled, shrugged, made a note on her clipboard and told us she would let the doctor know of the development.

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For the next half hour or so Jim and I half-listened to the podcast we had playing while Jim kept trying to wiggle his toe. After a few more slight twitches of the toe, it became clear that the more Jim kept trying to wiggle it, the less movement he would get out of it. It seemed as though this most minor movement was tiring him out. I told him to rest and save his energy so he could show Isabelle when she returned. Eventually Isabelle returned from lunch and made her way over to Jim’s bed where we were. I told her that Jim had a surprise for her and she said “Oh, what ‘s that?”. I pointed to his big toe, and Jim wiggled it ever so slightly. Isabelle gasped in surprise and said “Oh my god!” startling a few people around us. She hugged Jim and said “what an amazing surprise!”. After a few more toe wiggles that drew bigger and bigger smiles from both myself and Isabelle we all sighed a big sigh of relief, and were anxious to hear what the doctor had to say about this newfound movement.

It was several more days before the doctor came by, and Jim had to demonstrate this movement to every nurse that came by as we insisted the doctor needed to come. Eventually he did, and when he arrived at our bed and said he had been updated about Jim’s development, he seemed to have already reached the conclusion that this was impossible. He informed us that spinal injury patients tended to have spasms that caused movements that appeared to be voluntary movement, but ultimately were simply spasms that the patient had no control over. We insisted this was not the case, and all but forced him to look at Jim’s toes. Almost resignedly he crouched down by Jim’s feet, and said “okay Jim, wiggle your toe for me”. Jim did so, and Isabelle and I smiled at each other and held back the urge to say “See! We told you so!”. The doctor still seemed unconvinced and said to Jim, “Okay wiggle it again. Now stop”. Jim wiggled his toe and stopped on command, and repeated this process one more time before the doctor stood up, said “alright, this is very interesting, we’ll see how things progress from here” and then excused himself and left. To me, it seemed this doctor was unimpressed with our minor miracle, but for the moment we were happy to simply have convinced him that it was real.

Over the following weeks and months Jim would regain further movement in his feet and legs as nurses, physio’s and occupational therapists forced his limbs to bend and move and encouraged Jim to try and move his muscles. The movement and sensitivity tests continued with a renewed sense of encouragement, and Jim slowly gained more movement despite not gaining any more sensitivity. After discovering he could wiggle his toe, I started joking that the nurses would come by and ask him to “do the hokey pokey” by putting his left toe in, and shaking it all about. This new development gave all of us renewed hope that Jim could gain significant movement despite the time since his injury, and I prayed for the day the Jim would be able to complete the hokey pokey.

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 By the time Jim left G.F Strong he could bend and move his legs at his will, and even stand up under his own power. The transformation that occurred during Jim’s time at G.F. Strong was nothing short of miraculous, and it all began with the tiniest of wiggles of a big toe. The limited movement Jim has gained has provided at least some amount of ability that he would otherwise never have had. We are all overjoyed at Jim’s regained sense of movement, but I am still waiting for the day that we can to the hokey pokey together.