It's like hangman - but without the fun

After 48 hours I had finally made it to Hawaii. I met my mom at the airport, and made it to the hospital. Standing outside of my dad’s room in the ICU my mom stopped me and prepared for me what I was about to see. She told me that my dad was heavily sedated, in a neck brace, and fully intubated and unable to speak. We went into the room and approached my dad as he lay on the bed. He was covered in endless wires and tubes that wound their way to various machines and IV bags that dominated the opposite side of the bed. The machines beeped softly and numbers flashed as countless fluids and medications were pumped into my dad. The soft and steady pumps of air from the respirator seemed to dominate the countless sounds emanating from the many machines as it forced air into my father’s lungs by way of a large tube that entered my father’s mouth and made its way down his throat to his lungs. As we approached his eyes darted over and saw us. He blinked and nodded ever so slightly to indicate his consciousness and understanding. I tried to hug him but was anxious of causing any undue pain or snagging one of the endless wires and tubes so instead I wound up placing my hand on his forearm as I stood by his bedside.

Jim, and the array of medical equipment that kept him alive in the early days

My mom began explaining the various items that surrounded my dad, and explained how previously the nurse had helped him spell out a word. Of course, that word was “yoga”, the significance of which my mom has already explained in her earlier story, found here. As she explained this to me my dad began to maintain eye contact with me with a sense of intent behind his gaze. He seemed like he wanted my mom’s attention but she hadn’t noticed as she was explaining everything to me. Once he finally had her attention again, he began opening and closing his mouth as if trying to silently say something. After a brief and futile attempt at trying to decipher what he wanted, my mom asked if wanted to spell again. He nodded in ascension, and she picked up a notebook and pen that was sitting off to the side.  She handed me the notebook and pen and explained that previously the nurse had recited the alphabet slowly, and when she reached my father’s desired letter, he blinked to tell her to stop. She would write that letter down, and start the alphabet over again until a word developed. We repeated this process and my father quickly spelled the word C-O-D-E. My mother looks a little confused at this and began questioning him about it. I immediately understood and asked if he meant that he wanted a better code with which to communicate with. He nodded enthusiastically, and I began suggesting ideas.  “Morse code?” I asked, and after a brief pause we both shook our heads in dismissal.  “Hexadecimal?” I said cautiously,  and then quickly realizing the silliness of such a suggestion shook my head. With that, I was out of ideas, but as I looked to my father again I saw his eyes dart to the side of the room and then back to me, and then to the side of the room again. I looked over where he was glancing and found a stack of papers left by the nurse. Each of these pages had a grid displayed, and on one page there were a list of words such as “NURSE”, “PAIN”, “TIME”, “YES”, and “NO”. However, one page simply listed every letter of the alphabet in its own gridded box. I smiled as I quickly understood what my dad had already conceived of minutes earlier. I explained that I would point at each row of letters and he would blink when I pointed at the correct row that contained his desired letter. I would then move across the row pointing at each letter and he would blink again at the desired letter. This way we would reach each letter much quicker than reciting the alphabet.  We did this a few times and after a few missed attempts of selecting the wrong row or column we began to get into a rhythm. Quickly I realized we could refine this further, and I placed numbers along the rows and columns. Then I could simply count upwards from 1 and my father could blink at the correct row, and again when I counted across the columns. We very quickly grew proficient at this method and began spelling endless words. Despite being lightyears quicker than the alphabet method, this process still took minutes of effort by both parties to successfully spell a word. Still, we were communicating and my dad wouldn’t let us stop. Nearly every minute my dad was awake he would be blinking madly trying to get us to once again get the grid square of letters and spell a word.

The original form we used to communicate with - normally used for cognitive testing 

Over the next 24 hours my dad spelled endless words instructing us to do various things such as adjust his head, wipe his eyes, read emails off of his computer and anything else he decided was important. At one point he remembered that it was a friends birthday and told us we should email him a happy birthday. Despite the incredible success of our new communication method my dad still wasn’t satisfied. He desired, even demanded a better way to communicate. When we didn’t fully understand his early requests for a new form of letters he spelled “NEW FORM TO SAY. REPLACE THIS FUCKING FORM”, a sentence that took nearly 20 minutes to construct. By the time we reached the all too critical expletive I dropped the notebook in exasperation and asked him if that was really necessary. His eyes twinkled with delight at my frustration and simply shrugged his shoulders in his all too usual way. My mom would later laugh at the fact that of all the motion my father could have retained from the accident, he got the ability to shrug his shoulders and roll his eyes. In an attempt to please my father I devised numerous versions of a new system including one that divided up vowels, consonants and common joining words into different grids so my dad could indicate which grid to begin at when spelling a word. Despite the increased efficiency, the increased complexity resulted in too many miscommunications between my father and the speller. Despite his demands, we stuck with the much simpler grid square of letters.

Much later, maybe a week after arriving in Vancouver, we further refined this system. We filled in empty squares with common words such as “YES”, “NO”, “THANK YOU”, “LOVE YOU”, and “PHOTO”. We also placed the more commonly used words higher up the grid so they could be counted out quicker. Perhaps the most commonly used words on the chart were “PHOTO” as my father demanded a picture with every visitor who came to see him, and “THANK YOU” to all those same visitors. Despite the many things my dad spelled out and communicated to me over the course of a month I was with him, the most important, and also the most difficult, was the time he decided to tell the story of the accident from his perspective.

Perhaps three days after arriving in Hawaii, (the fourth or fifth day after the accident) I was in the ICU with my dad while my mom was back at the hotel trying to get some much needed rest. My dad began blinking, a sign that we had learned meant he wanted to communicate. By this point we had gotten so efficient at our system that I wouldn’t always write down the letters as he spelled them out because I would just remember them and then guess at the word he wanted. I likened this process of guessing a word to the game of hangman – but without the fun. I started doing this, and after the first couple words he continued to glance at the notebook, wishing me to get it and write down his letters. I complied, and we began again.  The first few words we spelled were “THE”, “WAVE”, and “TWISTED”. I stared at the sheet and then at my dad in confusion trying to guess what his intent was behind this strange sentence. He blinked furiously and again compelled me to hold up the grid square and keep spelling. Over the next hour my father spelled out a two page letter containing his story of the accident. Letter by letter we painfully deciphered the story no one but my father could tell. Constantly we were interrupted by nurses who came to tend to the machines by my fathers bedside, and many times I asked if we could take a break as I saw how much effort the task was taking him. He shook his head, and determined, nodded again at the grid square. After a long, painstaking hour his story was written, and I asked him if he would rest. He nodded, and immediately closed his eyes. I sighed, sat down outside his room and began to cry as I reread the story he had so painfully written. I called my girlfriend and tried to explain the cocktail of emotions that were taking place inside me and she did her best to comfort me without truly understanding.

What follows is the story written by my dad using our communication system. Below are photos of the notebook, filled with slashes indicating words finished by guessing, and scribbles and scratches of corrections.

THE WAVE TWISTED AND DROVE MY NECK INTO THE SAND SO VERY HARD. I WAS PARALYZED AND ROLLED ONTO MY STOMACH AND STARTED TO DROWN. SOMEHOW ISABELLE SAVED ME, A FEAT OF STRENGTH AND LOVE I WILL NEVER UNDERSTAND BUT WILL BE ETERNALLY GRATEFUL FOR. THINK I BROKE MY C-FOUR VERTEBRAE. THIS IS BAD. I CAN'T BREATHE ON MY OWN. BUT STRANGELY I BROKE MY C-FOUR VERTEBRAE OVER FORTY YEARS AGO WHEN I WENT THROUGH A CAR WINDOW HEAD FIRST. MAYBE THE SCAR TISSUE WILL PROTECT ME. REREAD. TOMORROW WE FLY TO VANCOUVER GENERAL HOSPITAL. WE ARRIVE LATE PM. PLEASE COME VISIT ME. WE HAVE A COMM SYSTEM.

My dad would not regain the ability to speak for over a month and a half, and until he did the only way he could effectively communicate was via this spelling method. Despite the crudeness of the system, it was an effective system that impressed everyone from visitors to nurses. At one point a nurse in Hawaii told us that this communication system we had developed was beyond anything she had ever seen. She said that usually spinal cord patients are in so much pain that they prefer to be unconscious or sedated so heavily that communication is difficult. Further, she said that many patients don’t seem to want to communicate, nurses struggle to get patients to answer simple yes or no questions, and yet here was my dad insisting he write his autobiography one letter at a time.

When I left Vancouver to return to my training, my dad still hadn’t regained the ability to speak. He was still running his breathing “marathons” in an attempt to build up sufficient lung capacity that he could breathe without the assistance of a ventilator. I still remember the first time I spoke to my dad after the accident, a short conversation, but one I will treasure forever. That however, is a story for another time.