Dr. Petersen placed us in a hold pattern. He recommended some additional laboratory work related to genetics, including a spinal tap, which we agreed to do. It would take about two weeks after the tests for Mayo to complete their evaluation. We reviewed the progress and notes from the other doctors. At least three of the potential problems were ruled out and there was a startling suggestion. The tests proved I did not have MCI (Mild Cognitive Impairment – the precursor to Alzheimer’s), Parkinson’s Disease or Multiple Sclerosis. They, also, ruled out depression. In addition, they wondered if I might not have cerebral palsy.
I was blindsided. My life, as I understood it, had been somewhat dictated by the effects of CP. It seemed impossible anyone could draw that conclusion in only five days when I’d been dealing with it for 50 years. Dr. Petersen clearly did not want to discuss my issues further, except to assure me I did not have a brain tumor or mass. We made an appointment to return in two weeks to review the progress and proffer a diagnosis, along with recommendations.
Sometimes the silence is overwhelming. Everyone who has been hearing enabled and becomes deaf is familiar with that hopeless feeling. While being acutely relieved that I did not have a form of dementia or early-onset Alzheimer’s, the possible diagnoses were quite limited. At least, from my perspective, there were few possibilities remaining.
We returned to our hotel, packed and checked out. Our destination for the day was Tarri’s brother and sister-in-law’s home in Fargo, ND. John and Annette had met us in Winnipeg, Manitoba, on our way from Vancouver to Ottawa and I was looking forward to seeing them again. John is big – not as big as Jeremy, our son from Tarri’s first marriage – but big enough. Both men are near six and one-half feet tall, and both about 220 pounds or more. For a skinny guy at 5’9”, I could have been intimidated. But they are similar in disposition and attitude – both easy-going and kind at heart.
If there is one common trait among the people that Tarri loves, it has to be kindness. Just like any family, they can be mean to each other upon occasion so “family” is not in the root of their spirit. Rather, it seems to spring from some deep well in generosity of thought. That is perhaps the most wonderful trait of our daughters Joy and Rebecca.
I have learned through the years that kindness is not an afterthought. Kindness, that generosity of mind and heart, is a core value. So it is with Joy and Rebecca. Knowing the personal battles each has faced and overcome, their generosity is truly humbling. Never confuse kindness with weakness. Neither woman is weak – both are more than willing to share their opinions, no matter how seemingly outrageous. No, their kindnesses come from the heart.
Joy and Rebecca came into my life, with Tarri, when our children from my first marriage were ten and eight. Sébastien and Chloé were confused and tired from the multiple stresses of my divorce, weekend sleepovers at their mother’s, new childcare and, now, a new family. Joy and Rebecca made it easier than any of us had hoped. As my mind slipped into forgetfulness, anger and confusion, Joy stepped in as big sister to both children. She is the one who explained to Chloé how Papa’s brain was changing – using small bowls and jelly beans, she showed her how tossing those candies into the bowls sometimes worked and sometimes missed. She explained how the netting between the bowls wasn’t complete. In addition, she gave her hope and understanding.
She played with Sébastien, talked to him, listened to his halting words with extraordinary patience. Sébastien is an introvert who struggles with communication in a very loud world. Rebecca stepped up for Sébastien on many occasions, making sure he was able to express his thoughts without interruption, drawing out his ideas and feelings, and giving him safety to express himself. At a time when my precious children could have been completely lost to me, Joy and Rebecca picked up the ball and made sure Sébastien and Chloé had a comfortable and comforting safety net of their own.
Joy and Rebecca – how can I ever express my gratitude to them? How can I ever let them know what their kindness means to me? For not only have they shown this generosity with my children but have extended it to me, as well. They have been there for Tarri, letting her weep and holding her when she needed a gentle touch. Through all the confusion, they were like a needle on a compass keeping us focused on our direction, not our problems.
Perhaps the very best people I have ever known are like this, for Joy and Rebecca came into our lives the years Sébastien and Chloé most needed them. And my children were the same age then as I was when my life reached its next step of painful evolution.
In 1965, my parents received a referral to a school for disabled students, the École Cardinal-Villeneuve; I changed to the École beginning with Grade 7. The school was accredited with the Québec City school board and offered Grades 1-9. Most handicapped children did not proceed past Grade 9 and were then encouraged to train for a trade, if possible. The cramped but cheerful four-story building was high up in the Upper Town of the old city, nestled between the Citadelle and the Château Frontenac, on 7 Rue Sainte-Geneviève.
Even now, forty-five years later, I recall my nervousness and anxiety. It consumed me that summer. And it was all so unfair … brought about by one man’s bias against a handicap. It hurt so bad that I could be pushed down so hard. Here I was facing the worst possible scenario, a dramatic change where I would know no one, while my brother, my best friend, moved to another school, a normal school. I really hate change but was especially frightened back then.
I couldn’t imagine what would happen to my life in a school where I was entering under the label “physically handicapped” with a speech impairment and movement disorder; and under the stigma of being mentally retarded. Although these characteristics are not inherently a mental handicap, all too often people characterize an individual with movement and speech impediments as mentally challenged. The problem is one of society and education. And I was terrified that, once out of the mainstream school system, I would not get the help to progress any further due to perceived difficulties of integrating handicapped or diverse children into the normal children’s school rooms.
I was very nervous and watched carefully the events of the first few days in my new school.
The first day at the École, most of the students arrived by taxis. There were about 90 students and it took some time for all of them to get into the school. Delivery of the kids was often very difficult for the drivers since many of the children were carried in wheelchairs or lifted from low-lying cars. Obviously, I was entering a whole new world where I had little insight into coping skills, even when dealing with my own disabilities. After the first year, it was arranged for the school to have access to Dodge RAM mini-buses that were higher and equipped with a lift at the back. For two years I took what Americans used to call “the short bus.”
It was the fall of 1965 and during those rides to school, I read the 12-volume, French edition of Carl Grimberg’s History of the World.
. Once inside, there were six classrooms and one supervisor for the halls. There were about ten kids per grade and two grades per classroom. The first graders had their own classroom but the other classes doubled up. There was a teacher for each classroom. During recess and lunch, the supervisor monitored the halls and helped the kids who weren’t being moved by a teacher. In other words, the situation was very chaotic except in the classroom. I don’t remember having problems in the classroom with the teachers or the other kids but recess and lunchtime were hard for me.
Students at the École were from all levels of society and discipline at recess was very poor. There was a lot of shoving and pushing in the hallways. The courtyard playground area, which had a magnificent view of the Saint-Lawrence River, had cursory adult supervision at best and bullies ran the show, especially in Grades 6 and 7. One young thug, in particular, bullied his way into being class president of Grade 7. His best friend was vice-president. A lot of students were intimidated and scared of these two kids, one of which was quite tall.
Being very skinny, I was regularly beaten up during recess by those guys and I had painful black bruises on my upper arms to show for it. The smaller of us often got knuckle punches that are very painful and hurt deeply into the tissue. It was autumn and quite cool so I no doubt wore long-sleeved shirts, which might explain why no one at home noticed my bruises. The bullying went on for about three months. I was very scared. Finally, one day (I do not remember how I surmounted my fear) I got a group of my friends together and we decided that enough was enough. We led a rebellion, went to the teacher, told her that those guys were bullying us, and demanded new elections. I put my name up and was surprisingly elected class president. Whether it was the teachers or the elections, or some combination of the both, the bullies left everybody alone after that. The rest of the students, including me, were able to finish school with a real sense of accomplishment and camaraderie.
For the first time in a non-family setting, I was able to bridge the gap between my abilities and disabilities. This was a tremendous triumph for me, personally. From such a low point, I was elected class President. That was such an amazing feeling. I was truly overjoyed to feel I belonged; that I had a place; that I fit. This fueled my self-confidence and was one of the first and most important steps in securing my path.
It was around this time that my recurring falling nightmares finally stopped. I suspect that, by this time in my life, I felt secure and confident enough to stop worrying about personal failure and being alone.
Upon reflection, having overcome a lot of anxiety at the École, I am still somewhat hampered by infrequent, but never dismissed, fears of rejection, loss and failure. As a result, I don’t believe I could have made the trip to Mayo alone. Every day a new doctor, a new test, and a new set of tasks to achieve. Every day brings another build-up in the stress as we wait. And to see no visible progress for two weeks is very hard. I continue the medications Dr. Sheldon began and rest as needed. I wonder if two weeks will be enough. Will they ask for more time? Will they need more tests? Will we have an answer or evasions? I believe in Mayo and its staff but it has been so hard and so much is at stake.
Meanwhile, we will be in Fargo in the dead of winter visiting family. It could be a good break as there is not much one can do when it is that cold. It seems almost ludicrous to be going from Winchester, Ontario to Fargo, North Dakota in March. If there’s an inch of ground not covered in snow and ice, I haven’t seen it. The temperatures in this area are routinely -20 to -30 degrees F. The winds can easily drive them to the -40 degree F/C crossing point.
Whatever we do, it will be different and that is good. We will wait but, this time, with hope. There is a lot of reason to hope and feel good about Mayo’s direction. The more diseases they eliminate, the fewer options that remain, the more we can reasonably hope for an answer.
For the first time in my life, I truly understand why people want an answer; more than they even want something back. They want to know why – they want closure. That’s what we want: to know the name of the monster and then move on with our lives. That in itself will be a gift beyond belief.
I believe that if we can find the answer, I can follow a regimen (whatever it is) and we can begin to move forward again. Knowledge provides opportunities for exploration and discovery. It has been my experience many times in my life and I believe that this pattern will continue in the future. That is certainly how things happened at the École. Once I got into the program, I was able to find my way and begin to grow.
The École’s curriculum combined normal schooling with physical therapy. Physical therapy was very good for me. We practiced not only painful rhythmic exercises to improve the strength and control of our bodies, but were given opportunities to develop skills necessary to further our education. We learned penmanship and typing on an electric typewriter, the IBM Selectric™. The Selectric™ was great because I could get a lot done very quickly. Half the students in my class regularly used a typewriter for dictation and exams. I thrived at that school because the teachers really cared about the kids and the curriculum was designed to maximize our use of tools as well as our own potential. I was able to maintain a 95% average or better and my self-confidence soared.
In Grade 8, most of the kids engaged in numerous practical jokes: it was fun even when I was the target. An anonymous classmate once pulled my pants down once during recess. I was so skinny then that my underwear came down with my pants, to the general hilarity of the class. Fortunately, I was wearing a long shirt. And even though the brunt of the joke, I thought it was pretty funny.
Spring 1967: the Stanley Cup playoff finals were between the Toronto Maple Leafs and the Montréal Canadiens. I was the only one in the class betting for the Leafs, with everybody else rooting for Montréal. For Americans, that’s a little like living in San Francisco and rooting for the Raiders. When the Leafs won, I collected almost fifty dollars. Nobody resented the money but I had to take a few more knuckle punches that week!
1967 was also Canada’s Centennial year and we had Expo 67 in Montreal. Several major cruise liners visited the harbor that year. One of these, the France, (now the S.S. Norway) arrived in May with much fanfare. On the appointed day, at about 11:30 am, the ship let out a mighty blast of its horn, saluting the city. Upon hearing that loud salute, most of the students left class (some in wheelchairs, some on crutches) and stormed down the incline to the courtyard, just in time to see the enormous ship glide majestically to its berth, all 66,000 tons of it. We stood there in the breeze, looking down in awe from our high position above the river. It was an incredible sight and I remember it as if I were standing there today.
In Grade 9, we once had a kissing contest. I wasn’t surprised to place dead last. One of the girls I kissed mischievously told me: “You’ve got a long way to go, Denys Leclerc...” Forty years later, I’m still working on it, according to my wife!
Unfortunately, or so it seemed then, Grade 9 was to be my last year at the school for disabled children. At the time, very few of them pursued their studies beyond that level. Most were encouraged to pursue a trade, if they could. So, with no other options, I had to transfer to yet another school at the end of the year.
My parents were pleased with my grades and progress at the École and believed I could continue my education. With their support, we began looking for a new school where I could complete a college preparatory program.
Most children change schools into Grades 9 or 10. It is an expected transition in growing from a child into a young adult. For a disabled child, changing schools is a nightmare from which one does not quickly awaken. And so it was with me. Where together we had learned how to succeed in an environment geared to our needs, now we would face the “real world” and the environment provided by people with no reason to empathize with our special needs. We would possibly, or perhaps probably, have to deal with bullying, abuse and denigration. Making friends with “normal” kids might or might not happen, and it was unlikely many of our friends would be going on with us.
I would not be elected class president ever again; I would not be selected for sports teams; I would not even know if I would be allowed to succeed until I had done so or failed.
Even so, with all the fear and doubts scampering through my mind, I had to go forward. I couldn’t go into a trade because there was so much more I wanted to learn. In any case, a trade wouldn’t have been feasible given my physical limitations. But that wasn’t the issue: I wanted to be a scientist and, in order to do that, I had to get an education that prepared me for college. I believed I would succeed if I could get an opportunity.
My opportunity came in the form of Mlle. Madeleine Bergeron, the Director of the École. Together with my parents, Mademoiselle Bergeron resolved to get me accepted into a Jesuit-run, top, academic, local private high school, the Collège Saint-Charles-Garnier.
Interview (December 1967) with Mlle. Madeleine Bergeron, Order of Canada (1972)
Principal, École Cardinal-Villeneuve (Translated from the French)
Q: How did the idea of founding a school for physically disabled students occur to you?
A: I was a member of the Women’s League for Youth. We met quite frequently and we were introduced to Doctor Irma Levasseur, the first woman to become a medical doctor in Canada. She suggested we create a school for physically handicapped children. We accepted her proposal with joy and proceeded to open a facility.
Q: Was this the first location of the school?
A: We started at another house. Later the school was moved to this location on Rue Sainte Geneviève.
Q.: Who suggested the name for the school?
A.: In those times, one had to consult the archbishop to seek permission for various things. Back then, the archbishop of Québec was Cardinal Villeneuve, whom we had met before. We informed him of our project, which he was happy to support. Upon our request to name the school after him, he joyfully accepted, adding: “It will be the most beautiful monument to my memory”.
Q: When was the school started?
A: In 1934.
Q: Do you accept mentally disabled children?
A: No. We only accept children with IQs which are quite above average. Our school curriculum is similar to that found in ordinary schools. Also, one has to be of average intelligence to follow the physical rehabilitation program.
Q: What is the school’s mission?
A: To physically rehabilitate children so that they can integrate into ordinary schools.
Q: How many staff members do you have? [At the time the school had ninety students]
A: We have twenty full-time people and a bit fewer as part-time staff.
Q: What qualifications are required to be hired here?
A: The people we hire here must be competent professionals with a sense of humor; and must be able to handle or identify subtleties in the community of students and faculty; to work as a member of a team; have a strong personality and character; and a vision to strongly help these people succeed.
Q: I have frequently heard about your project to build a new school. Will it happen?
A: Yes. It will be a new building featuring many more rooms, which will be accessible to wheelchairs and will enable us to accept more children. Our project is eagerly supported by many organizations.
We hope that Mademoiselle Bergeron’s dream will come true. For this woman of character, nothing will make her happier than the well-being of handicapped children. Don’t you think that she excels in this capacity for a person of the weaker sex?
By Micheline Pelletier, Grade 9, published December 1967 in the student newspaper “Le Sourire” (The Smile)
The Age of the Earth
(Translated from the French)
How old is the Earth? Here is a question that all geologists have asked themselves for a long time.
Some years ago, they found the answer thanks to the presence of lead in radioactive uranium. How so? Since uranium takes eight billion years to turn into lead, they found that the answer could be found by using this fact as a starting point.
There are several types of lead: some samples have an atomic weight of 204 times that of hydrogen, the lightest of the elements, while some others weigh 206, 207 or 208 atomic units. Lead 204 is stable and was already there when the Earth was formed. The other types of lead are derived from the decomposition of radioactive uranium.
As the Earth got older, the initial uranium would emit radiation. Slowly, very slowly, the uranium would decompose into lead. Geologists came to the conclusion that, by taking into account the initial quantity of lead present initially, there is currently an equal amount of lead derived from uranium and still-radioactive uranium.
Therefore, since approximately half the uranium present at the Earth’s formation has changed into lead, geologists concluded that the Earth is now about 4.5 billion years old!
By Denys Leclerc, Grade 9, published December 1967
in the student newspaper “Le Sourire” (The Smile)