Mom looked to be doing quite well during the first six months after Dad’s passing. We worked to close Tara and she sorted out Dad’s affairs. She had a positive outlook and appeared to be adjusting well to her new life. Catharine noticed it too.
Over the next three months Mom’s health declined. She lost her positive attitude. Mom became quiet and withdrawn and she got thinner and frail. Catharine said she was afraid to give Mom a hug in case she broke a bone. It seemed as if Mom had given up on life. I was doing more for her care.
Mom took me to dinner for my 40th birthday. The following week I found Mom dragging herself around the house. She literally didn’t have the energy to eat. I was concerned. Mom wouldn’t see a doctor but towards evening, due only to my insistence, she said she said she would try to see her doctor the next day. This relieved me somewhat. I helped Mom into bed at 11:00 PM. She didn’t want to read as she usually did. Instead she silently curled up resting her head on the pillow and sighed as she closed her eyes.
In the morning I looked in on Mom from her bedroom door before I left the house at 8:00 AM. She was sleeping. When I came home two hours later Mom was still in bed. As a rule Mom was up and about by 9:00 AM. It occurred to me that she said she hadn’t been sleeping well the last few nights.
“Okay,” I thought, “I’ll give Mom a bit longer then I’ll wake her up.” I went downstairs to work on my computer. An hour later I came back upstairs to find Mom still asleep.
“I’ll make Mom a cup of coffee and call her.”
At 11:20 AM, with coffee in hand I walked into her room and put it down on her bedside table. Mom was lying on her side facing away from me as I stood at her bedside with the window behind me. “Mom,” I called. She didn’t move. “Mom,” I called a bit louder. She still didn’t move. Then I reached out to nudge her shoulder. As soon as I touched her I knew. Immediately the logical Mr. Spock in me plainly said, “Mom’s dead,” but my heart wouldn’t accept this. “No, no, no. That can’t be. Keep trying to wake Mom up. She’ll wake up.”
In disbelief I ran around the bed bending down to look closely at Mom. Her eyes were closed. She lay motionless. It was too dark to see properly. I ran around the bed, yanked the drapes open and ran back. Making the room brighter didn’t change anything. Mom laid there in total stillness.
“Mom,” I said loudly as I watched her. No response. “Mom! … Mom!!” I called louder. Still no response. “Mom, don’t do this to me … Mom!!!” I was screaming at her now. Again and again I tried in vain. I felt as if somebody had kicked me in the stomach.
Eventually I knew I had to call someone. Taking a few paces toward the door I stopped and turned back to scream at Mom some more. My heart could not accept that Mom was really gone. I finally made it to the kitchen and stared at the phone on the wall.
“Who do I call?”
Then I remembered that Mom had called Corpus Christi rectory the night Dad died. So I picked up the phone and called the number I knew by heart having dialled it many times since I was a boy. Monica, the church secretary, answered. I told her Mom died during the night and that I had just found her.
“Your Mom!” she exclaimed. “Brian, I’m sorry … Are you alone?”
“Have you called the police?”
“No,” I answered.
“Brian, you have to call the police. I’ll call for you.”
“No,” I said, “I’ll call.”
“Alright then I’ll call someone to go and see you.” I thanked Monica and hung up.
“Kate,” I said to myself. I wanted Catharine to see Mom lying in bed as I had found her before I called the police. When I phoned I got her answering machine. I said, “Call me as soon as you can.” Not knowing how long it would be until she called back I decided to call the police.
“Police,” I wondered, “what’s the number?” I thought some more. Then it occurred to me, “Inside cover of the phone book. That’s it.” So I got the phone book out, placed it on the kitchen table and opened the front cover. In the top right corner was a big, bold 911. “That’s right, 911.” I calmly said to myself and I dialled. Never in my life had I been so stressed out that I couldn’t think.
The woman who answered asked where to direct my call. “… police,” I replied quietly.
She put me through and the lady there asked why I was calling. “My Mom, I think she’s dead.” I knew Mom was dead. I just couldn’t say she was.
“Where is your Mom?” she asked.
“Are you alone?”
There was a pause and then she said, “Okay, we’re on our way.”
Right after I hung up the phone rang. It was Catharine.
“Kate, come right now.” She came as fast as she could but the police, paramedics and firemen arrived first.
I led the police into Mom’s bedroom followed by the paramedics and firemen. They looked around the room and then at Mom. The paramedics started to lay Mom flat on her back. I turned away. I couldn’t watch. As I walked down the hall toward the kitchen followed by a policeman I asked, “She’s dead isn’t she?”
“Yes,” he replied.
Somehow I needed conformation of what I already knew.
As we got to the kitchen the door bell rang. It was Joe our long time family friend. Monica asked him to come and see me. As we sat at the kitchen table talking Catharine came in the door. She had seen the Emergency Response Vehicles parked out front as she approached the house. “What’s going on?” she asked frantically.
“Mom died last night,” I said.
She wanted to see Mom and we walked together to her bedroom. The paramedics had laid Mom flat on the floor across the foot of her bed and covered her with a sheet. Catharine pulled back the sheet. She gasped when she first saw Mom’s face in death. Then she looked at me and I told her how I had found Mom – the story I’d just told Joe and the police.
More neighbours started to come. Joe, who was still in the kitchen when Catharine and I got back, could see that I was far from alone now. He expressed his deepest sympathies and said he should go. I thanked him as we walked to the door. Joe and his wife Peggy happened to be leaving for a trip to Ireland that evening. At the door I asked Joe to say hello to Ireland for Mom. He smiled saying he would.
The other neighbours all expressed their condolences as well but there was really nothing they could do. They gradually left leaving Catharine and me with the police and paramedics to wait for the coroner. The only other visitors were Fr. Randall and Fr. Alan, the parish priests from Corpus Christi, to give Mom the last rights as Catharine and I watched.
It was apparent to the Coroner after seeing Mom that a blood clot had worked its way through her body finally lodging in her heart during the night. He estimated Mom died about 4:00 AM. I know for sure she was alive at 2:00 when I last looked in on her before I fell asleep. The police called the funeral home and they arrived 15 minutes later.
I had to see the undertakers carry Mom out the door and put her in the hearse. Catharine and I stood on the front lawn and watched as the hearse drove down the street and disappear from view. We walked back into the house. Catharine wanted me to go back with her and stay the night. “Thanks Kate,” I said, “I’m alright by myself.” I just wanted to stay put.
The next day Catharine and I went to finalize Mom’s funeral arrangements. Sunday we went to the funeral home to see Mom as she lay in her casket dressed in her fondest off white suit. Just like Dad Mom looked as if she was sleeping. Catharine and I sat quietly with our thoughts and watched Mom. Eventually we looked at each other and knew we had to leave. The following evening I went back to stay with Mom for an hour until they closed. I was trying to reconcile the disbelief in my heart.
Tuesday morning we gathered at the funeral home for the half hour visitation. I sat with Catharine through the service and only she and I rode in the hearse to Mom’s funeral mass. As we entered the full senior choir was singing. Fr. Carey spoke warmly of Mom and said prayers over her at St. Andrew’s cemetery. I carried Mom to her final rest.
As we left Mom’s graveside to go to a reception in the church hall a few darkened clouds drifted by. The breeze picked up slightly and the skies threatened to rain. Catharine was too lost in her thoughts to notice the weather. I looked up at this and thought, “Ah Mom, a stormy end to a stormy life.”
In the mid 1970s biofeedback captured the public’s interest and became my hope to overcome my facial paralysis. I dreamt of making facial expressions again and most of all to be able to smile. A doctor in Los Angeles was well known for his expertise with this technique. In late May of 1975, Mom, Dad, Catharine and I were en route to California. We stayed at a hacienda-style hotel called Griswold’s in Claremont, a suburb of LA, where the doctor had his practice. It was a two storey building and the elevator was outside. The vending machine beside the elevator sold Canada Dry soft drinks. I had never seen a vending machine selling Canada Dry soft drinks in Canada.
Biofeedback: A training technique whereby an electromyograph is used to measure electrical impulses produced by muscle movement. The impulses are displayed on a screen to the person being monitored in order to assist that individual to improve muscle function.
At his office the California doctor stuck three electrode needles in each side of my face. Each needle hurt like sticking an IV needle in my hand. My face felt like a pin cushion. The electrodes were wired to an electromyograph to measure the electrical impulses produced by muscle movement in my face. My facial muscles were paralyzed so they didn’t produce electrical impulses. Since they didn’t produce electrical impulses biofeedback wouldn’t work for me. After watching the screen while adjusting the electrodes the doctor decided he couldn’t do anything for me. I was disappointed. I had imagined myself with a big smile again and placed all my hope in this doctor being able to help me.
Despite the disappointment we spent some tourist time there. We visited Disneyland for a day and toured Universal Studios the next. It was really cool to see how Hollywood shot movie scenes and made things appear a certain way for the camera. There were no sides on the tour bus. Every now and then a man dressed as Frankenstein suddenly poked his head into the bus to give us a scare. He got a lot of gasps followed by laughs and I laughed with them. That evening we drove around Rodeo Drive to find the homes of the movie stars. Next day was the long flight home.
I turned 16 in June of 1975. Like most 16-year-olds I wanted to get my driver’s licence and I vowed to get it before I turned 17. I passed the application for my learner’s permit. Now I could practice driving with a licensed driver with me, usually Mom or Dad, and take driving lessons. I took lessons with two driving schools and got a lot of practice driving my parents around town. When the instructor thought I was ready we booked a driving test. After a third test I got my licence in May of 1976 one week before I turned 17.
Mom was waiting for me when I got back with the good news. She gave me a big hug and disappeared for a moment while I sat down relieved at the kitchen table. She came back with a set of car keys that had been waiting for me since my first test. I proudly put them on my key ring.
Driving afforded me the ability to expand my world. I could go places, see friends, meet new people and run errands. Most importantly I experienced different situations that the limited mobility I had in those years after my recovery would not have allowed. This was especially poignant to me because I well remembered what losing my independence to my failing health was like while I was in a wheelchair.
My health issues continued. Another consequence of my facial paralysis was that my lower lip tissue stretched so that it curled out and down because of the lack of muscle support. By July of 1975, I was getting leather lip where the lip skin grows back into the mouth. I saw a plastic surgeon who proposed a simple procedure done under a local anesthetic. He would cut a wedge out along the inside of my lower lip which would raise it up when the two sides of the gap were sown together. This seemed like a good solution. The only drawback was that since my lip tissue would keep stretching and curling down I had to have this surgery every four to five years.
The following October I was back in Toronto at the Wellesley Hospital for the surgery. I was brought into a small OR while still in my street clothes. I got up and laid flat on the operating table and they covered me with a green sterile sheet. The surgeon marked out on my lip where he had to cut. Then came the needle. Starting on my right he poked my lip and injected the freezing. EXCRUTIATING! I gasped each time he injected the freezing as I laid there as rigid as a board trying my best to endure the pain. It took five pokes to freeze my lip all the way across. Next he picked up a scalpel in his right hand and forceps in his left. He started to cut out the wedge pinching the end of it with the forceps. As he cut along the lines I could see an ever increasing length of tissue that was once part of my lip. Blood trickled down my throat. After he cut the wedge out he proceeded to stitch me up. The freezing was wearing off as he was finishing just as he said it would. I felt the last few stitches going in. It took half an hour from start to finish. I walked out of the hospital accompanied by Mom with a swollen, bloody, stitched–up lip. My lip healed during the next two weeks.
Over 22 years I had this procedure four times – two at the Wellesley Hospital in Toronto and two at St. Joseph’s Hospital in Thunder Bay. I still wonder if cutting with the scalpel would have hurt less than injecting the freezing.
I never gave up on the hope of regaining the ability to smile. So in 1977 I was excited to discover a doctor at the Cleveland Clinic in Ohio had developed a new surgical technique to help people with facial paralysis. It involved rerouting a sensory nerve from the front of the neck and attaching it to the obicularis oris muscle surrounding the mouth. If it worked I would be able to move my lips again. But there was a trade off. I would lose the feeling in an area of my throat in exchange for regaining the use of my lips. It was a trade off I was willing to make.
Mom, Dad and I flew to Cleveland to see the doctor. He said he could do the procedure the next day. If I wanted to go ahead with it he had to know soon so he could book the OR. I had an hour to decide. At 17 this was the first time the decision to have surgery or not was mine. It was a huge decision to make on the spot. As I thought about it I said to myself, “Why am I here? He can do it tomorrow so let’s go for it.” My answer was an enthusiastic, “Yes.” I had to get pre-op bloodwork, have an ECG and be at the clinic for 6:00 the next morning.
To get the obicularis oris muscle to function fully the doctor would have to take a nerve from the right side of my throat and try to attach it to the right side of the obicularis oris muscle. Then he would do the same with the left. He would do both sides if the right was successful. When I woke up after surgery only the right side of my throat was bandaged. The surgery was unsuccessful. Since the muscles in my face had lost their nerve supply five years before they had wasted away. The doctor could not find any trace of the obicularis oris muscle to attach the nerve to so he put it back in my throat. It took six months for the feeling to come back.
It was the second try to regain at least some movement in my face. Again I was disappointed. Biofeedback couldn’t help me and the surgery in Cleveland was unsuccessful. My quest to find someone who could give me facial movement was like Dorothy searching for the Wizard of Oz. But I didn’t want a heart of courage – just a smile.
“Someday I’ll get my smile back.” I was confidence that another surgical technique would be developed.
That fall Aunt Josie, Mom’s sister, and Uncle Jimmy came to visit us from London, England. I was apprehensive. My appearance had changed so much since I saw them seven years earlier when Mom took me overseas to visit the relatives when I was ten. I didn’t want them to see me until my facial muscles had regenerated and I was back to looking the way I was then. When we met I was no different to them. Their acceptance encouraged me to come to terms with the changes in my body. I had adapted to my balance and co-ordination issues but I hadn’t fully accepted my facial paralysis. I still clung to the hope that somehow the cranial nerve would regenerate and I would get the movement in my face back. The cold, hard fact was the nerve would never regenerate. My Aunt and Uncle’s acceptance of me, despite the changes in my body, helped me accept who I had become.
“I’ll have facial paralysis for the rest of my life!”
The thought fell on me like a ton of bricks. I couldn’t grasp a sense of how long that was, but I accepted that facial paralysis would always be part of me.