During his illness, Ivaan agreed enthusiastically to any public speaking opportunity, accepted every invitation to attend professional conferences on some aspect of his medical condition, and volunteered as a subject for any research project under way. To say the least, he was not a passive patient.
One year, when he still had enough clear speech left to make himself understood, but not quite enough memory to deliver a speech unaided, he was asked to speak at an event to raise funds for the expansion of Toronto Rehabilitation Institute. I helped him write a speech detailing how important Toronto Rehab had been in his recovery from the strokes that affected him so profoundly, but he couldn't see clearly enough to read written text.
So we devised a plan where I'd sit in the front row and give him some key words from each section of his presentation, and he would expand on
what I'd given him. When he paused, I'd cue him with some more key words from the next section, and off he'd go. It was a terrific speech, and was well received.
On another occasion, his Speech Language Pathologist asked him to attend a conference with her, to demonstrate a technique the two of them had developed to aid stroke patients in swallowing without choking. This technique was developed by the traditional practice of Jews at a Passover Seder, who would have a cushion at their chair and recline to the left as they were eating, in slight imitation of earlier generations reclining in comfort on soft cushions on the floor during the Passover meal. I'd mentioned to Ivaan that they always reclined to the left. He found that by tilting his head to the left and tucking his chin in, he could swallow with less risk of choking. He mentioned this to his Speech Language Pathologist, who asked him to demonstrate the "Kotulsky Tuck" to a conference of her fellow SLPs.
Many of the research experiments in which he took part involved electrical stimulation of the muscles of his right arm, which was his paralyzed side. Ivaan was so certain that with enough electrical current going through his arm he could overcome paralysis that when the researcher's back was turned, Ivaan would adjust the intensity of the electrical stimulation (well, he referred to it as torture) to its maximum level. He also bought an electrical muscle stimulation machine for use at home, and tried to get me to administer electrical shocks to him. When I demurred, he had the researchers draw the ideal location of the electrodes on his arm with permanent marker, so I'd know where to attach them for maximum effect. I usually tried to get out of aiding him with his unscientific experiments. He became such a fixture at Lyndhurst Hospital, where research was conducted, that he regularly dined with the professional staff at lunchtime in the cafeteria. He had become just part of the crew.
Sometimes he'd volunteer me as a co-participant in research projects. It was very interesting when they'd ask him a series of questions about something, and then ask me the same questions, to find out how I predicted he would have answered. It's surprising how much I learned about him from these research projects.
After Ivaan's death, I decided to continue as a research subject in the Neurology Research Department at Toronto Western Hospital, as a way of expressing my appreciation for the excellent care he'd received there since his first stroke in 2000. Eight years later, I'm still a "lab rat", mostly acting as what's called a Healthy Control in studies related to Parkinson's Disease. Over the years, I've seen PhD students and Post Doctoral researchers cycle through the research lab, marry, have children, continue their careers and participate in exciting new research projects. I've learned that I am surprisingly good at tasks involving memory, that I share with Ivaan a real pleasure from undergoing MRIs, and I have pictures of my brain on my computer at home. It's quite a nice brain, actually. One of the researchers told me it was a dense brain, and I admit I was a bit offended until I realized a densely packed brain is a good thing to have, and she wasn't saying I was an imbecile.
All this to say that if future generations are ever leafing through my yearly appointment calendars and they see the words "Lab Rat" written, it's code for the fact that I spent that morning at Toronto Western Hospital with a bunch of nice people I've come to know well, and that I undoubtedly went to my grave with coloured permanent marker on my scalp, drawn at the places where electrical shocks were administered.
Here is an image of my brain, in case you want to admire how dense it is.
Post a Comment