Locked In

This post began its life after my post on Juliet and how I have tried to find my friends on the internet. Newly enthused to try finding people on the internet again, someone I knew for less than a year came to mind. I googled her name and this post has resulted.

If I were to imagine my worst nightmare, it would be to be fully conscious and yet unable to move or to speak; to be acutely aware of my surroundings but unable to communicate. Alive but not able to interact with life. For a rare few, this situation is a daily reality and a possible life sentence. It is called "Locked-in Syndrome" which was a term coined by Dr. Fred Plum, MD '47, former chairman of the Department of Neurology and Neuroscience at Cornell's Weill Medical College.

Judy Mozersky was an active, vivacious young woman; a dancer and a student at Cornell. Then one day in 1990, the 19 year old suffered a stroke affecting her brain stem. She had no predisposition for stroke except that she had a history of severe migraine and that she was on birth control pills. No one had ever warned her that this could put her at risk.

After spending sometime in intensive care, during which she fought to get off the respirator and to get rid of the stomach tube, she was finally stable enough to return to her native Ottawa and was warded at the Rehabilitation Centre on Smyth Road but she was "locked-in". She was able to breathe, swallow with some difficulty but apart from that the only thing she could consciously move was her eyes and then only up and down.

I had been volunteering at the Rehab Centre for about a year and up to then I assisted in art and exercise classes for stroke patients. These classes were supposed to encourage rehabilitation of fine motor functions in a fun way. They were indeed a lot of fun. In fact, I learned a lot of crafts while helping out there.

I also played wheelchair basketball with some patients once a week. I really sucked at that but that did not mean I was not willing to risk life and limb competing with guys who knew how to use their wheelchair as an offensive weapon. Perhaps to spare me serious injury, my volunteer coordinator, Dale Patterson, asked me one autumn evening if I would like to try something challenging. Nursing bruisers and fingers crushed between wheelchair rims, I said that I would and thank you.

That's how I was introduced to Judy. Dale seemed to think I would know how to handle myself but I think I must have just stared and stared that first time. I did recover however and tried to make myself useful. I visited once or twice a week with Judy. I was meant to be part of her recreation time because other volunteers, family and friends visit her also but it was more to do work or to help her rehabilitate.

So I started to read to Judy. Sometimes, she would chose something. Other times she would allow me to bring something of my choice to read to her. One time, I brought the Secret Dairy of Adrian Mole to read to her because I was finding the book very funny and I though funny would be good. It went reasonably well until the book touched on Adrian Mole's sexual awakenings. I felt most uncomfortable because it seemed like a little inappropriate for me to be reading that to her and I was afraid that I had broached a subject that would upset her. I am unsure if she was uncomfortable or she sensed my discomfort but she signaled with her eyes for me to stop. She then told me to read a letter from a friend instead.

How did we communicate, you ask? Judy can only move her eyes up and down. She flutters them to get attention. Eyes up mean "yes" and eyes down means "no". Then we use a special board in which the alphabet is divided into quadrants. I would call out the quadrant number and she would indicate the correct quadrant and then the correct alphabet as I read it out. By using this letter by letter spelling, Judy is able to communicate and she can even dictate letters, essays and eventually a book.

Apart from that very first visit, I don't think I felt uncomfortable around Judy again. I believe that this was because, it was very evident that there was a very normal, active woman there and we were able to communicate. There was no overwhelming depression or despair nor any wallowing in self pity either. Here was someone who was looking forward and trying to get on with life.

Of course, there were moments of frustration and perhaps doubts. Initially, she was reluctant to have friends visit and was not keen to read their letters. It was painful for her to see their lives moving on while she was not able to keep a pace. It was particularly difficult around the time when her friends were graduating. Yet, it did not keep her down for long. She worked through it and began to enjoy receiving news from her friends and at the same time, set about trying to get her own life moving.

Judy would also write a book entitled "Locked In" which seems to have become a very important book; a book that brings inspiration and hope to many stroke patients and their family. Many who have read it are struck by the positive outlook of the book, of Judy's. Today, Judy is finishing her degree course in psychology.

I was still around to witness some of the excitement and frustration when the medical personnel worked with Judy to try to get computers to recognise her eye movements and to operate things like lights, kettles and other household objects. This was in grand preparation for getting Judy to move out of the Rehab Centre and have her own customised apartment. I know they succeeded because Judy is now installed in her own apartment and she goes to the malls to do her shopping with some assistance from her friends or nurses. She is regaining her freedom, her life and she is moving on.

There is an old saying that goes something like this, "I was complaining that i had no shoes for my feet until I saw a man who had no feet." Having known Judy and her positiveness through what for me would be my worst nightmare has helped me to deal with life's lesser problems more positively too.

I met Judy's parents once and they thanked me profusely for my visits but I can honestly say that I needed no such accolades. When I think of what Judy has achieved and in such a short time, I feel I have done no more than hand a cup of water to a marathon runner. In return, I have learnt so much about the strength of the human spirit and it has been a privilege to have been even a small part of Judy's journey. Furthermore, I recognise that it has been a long hard journey of love and devotion by Judy's parents too and really, anything I have done pales in comparison to their dedication and commitment to their daughter.

My last meeting with Judy was a short one and a surprise. She was already installed in her new apartment and I literally bumped into her at one of the shopping malls. She looked like she was happy to be moving on with her life.

Maybe one day, we might meet again, Judy, and have a laugh about how embarrassed I was about reading Adrian Mole's Diaries to you on that winter's night so long ago. Until then, I wish you a full and happy life. God bless.

If you would like to read a more complete article about Judy, please go here.