My Mother and Me
Cape Cod, MA
Photo by Brian F. Cornwall, c. 1967
Agoraphobia - noun
"abnormal fear of being helpless in an embarrassing or inescapable situation that is characterized especially by the avoidance of open or public places"
I hope you will bear with me. This story is a true but winding road with, in my mind, a clear direction.
I was 18 when my mother was diagnosed with ALS (Lou Gehrig's Disease). This was a sad and terrifying prospect for my mother, aged 56, my eldest brother, aged 31, and for me, particularly as no-one really explained what was going on. I was left to figure out what it meant on my own. I know that sounds selfish. It's not like I was the one with the terminal illness but I was just 18 and, probably a bit selfish.
When the news came to light, I had already been plotting to get out on my own. I knew I was as gay as a pride parade but I hadn't told a soul. I desperately wanted to leave home to have the breathing space to find out what that meant in a space where I could be myself. In the meantime, it was just me and my mom at home. She loved me. She worked very hard and took care of me and taught me much about how to behave in society but, if I am completely honest, I don't believe she liked me much. I wasn't becoming the young woman of whom she had dreamed. I felt she looked at me as though she knew my dirty secret, as though she knew I wasn't "normal". An older friend told me several years later that my mother did know I was gay but the friend never revealed how she knew this.
Those of you who know me and have read other pieces prior to this, know that my mother had faced many difficulties in her life. She had lost the love of her life during the second world war. He had been shot down over France. Subsequently, she had married my father and had the four of us kids and raised us. They divorced when I, the fourth child, completed elementary school. She was not treated well in her marriage and, I believe, afraid of the hurt that life can bring. Somehow, in all of her suffering, I landed up catering to her anger and disappointment - forever trying to appease her and bring her joy. I handed my life over to her control in this respect.
With her disease, that control continued in a different sort of way. While I continued to work three jobs and go to college full-time, I now did my best to take care of her too. I had asked if she wanted me to quit school to care for her more thoroughly but she would not allow that. I can't say I was not relieved. Full time care of a parent at 18 is terrifying. I helped her dress and get ready for work. I did her hair - badly. I made meals, cleaned the apartment and did the shopping. Anyone who has run a household - you know the drill. Beyond all this, I kept up with my studies and my jobs and the one and a half hour commute to school and back.
By the time I entered second year, my mother had been accepted from the waiting list for the veteran's care facility at Sunnybrook Hospital in Toronto. I shut down our apartment and found a place with a roommate uptown, near the hospital. This eased things up for me a bit though I had to get another job to pay rent. I now also worked five nights in a nightclub and restaurant downtown on Church St.
My brother and I figured out how to spell each other off at the hospital though we would still come in four to five times a week each. This way we had some cross-over time together. I have no idea what I did well nor terribly through all of this. I had neither the emotional intelligence nor the information and resources to get through it all particularly well or with much grace.
A month or so after I finished my diploma, my mother passed away from that horrible disease, which I can only liken to being buried alive. One's mind remains perfectly aware while the body dies around it. On the night of her death, Chris and I were both at the hospital. We had just been down in the cafeteria with her. It had seemed like a better day for her than some. She had some yogurt and and we all went outside for a cigarette before heading back up to her room. Yes, she smoked right up to her last day - an act of defiance and personal enjoyment.
Once at her room, the nurses took her in to prepare her for bed before we came in to say goodnight. Suddenly, the nurse re-appeared in the hall. "She's going. You need to come in now." Oddly, in that moment, I was incredulous and unsure what the nurse meant by her statement but, once in the room, I realized what was happening. Through her muffled speech, she repeated, "Hold me up. Hold me up." I suppose she didn't want to take this journey lying down. That was my mom. Fiercely independent and angry at anything that got in the way of her path.
Chris and I were on either side of her, arms entwined behind her, holding her up, our other hands in hers as she moved onward and upward from the constraints of her physical being.
I was twenty when she died. I had finished school. I had taken a leave from my job at the bar. My roommate had graduated and moved on. My girlfriend left. I no longer had to go the hospital. There was a void. I became confused and anxious. For six months, I would awaken unsure of where I was in my life. Did I work? Was I in school? Did I have to go to the hospital? I would panic thinking I had abandoned my mother - forgotten to visit and I would lay there struggling to remember what was real and what was not.
This anxiety began to spread its insidious roots throughout my life, throughout my days but I had no idea what was wrong nor what was becoming of me. One day, while out at lunch with my brother, I became dizzy and when I rose to go the washroom, crashed face down and unconscious in the middle of the restaurant floor. I awakened to the ambulance attendants and the restaurateur saying, "I think you had an epileptic seizure!" This was in no way comforting. It was not a seizure - determined after a trip to the hospital where a myriad of diodes were glued to my head and strobe lights flashed into my eyes.
After that incident, I became increasingly afraid of a repeat incident, anxious in public places and uncertain of what was going on with me. I thought I had some terrible disease and that I would simply drop dead one day.
One day, while watching the Dini Petty talk show, I was finally enlightened. She had a guest panel of medical professionals and patients who suffered from anxiety and agoraphobia. I jotted down the details and the names of some programs and telephoned my doctor to make an appointment that week.
I was very blessed to have a wonderful woman doctor who listened closely to what I had to say, reviewed the information I had brought and set me up with an appointment at, oddly enough, Sunnybrook Hospital, where my mother had been in the Veterans Chronic Care facility. I was accepted into the hospital's out-patient treatment program for people with anxiety disorders and agoraphobia. The program was a full-time commitment and, thank heavens, it was covered by the Ontario Health Insurance Plan as the illness had made it impossible for me to continue my work at the restaurant and bar. It was all I could do to get on the bus and go to the hospital without jumping off, mid panic attack. To add to it all, I had terrible ulcers and felt sick to my stomach most of the time.
I was diligent and determined and by following their treatment plan of: medication, exercise, biofeedback, and compulsory daily, repeated trips on transit with proof of completion in bus and subway transfers that ended six months later with a 3 hour visit in the Toronto Eaton Centre, I got through it and felt better. I still had some panic but I had learned how to cope with it and talk myself down instead of running from it. I learned to relinquish the shame of it by telling people, friends, what was going on with me. I was astounded by how many people were relieved to hear me say that I suffered from panic attacks and agoraphobia. It seemed to give them the permission they needed to talk about their own fears and anxieties. Essentially, I outed myself instead of carrying the fear that people would find out and think I was crazy. I outed my illness and, in doing so, it helped me and others to heal.
I owe a debt of gratitude to the health care professionals in that program. I can't think what would have become of me had that treatment not been available and had it not been given with sincere love and kindness. Years later, in my late thirties, as I prepared for my first of many nights on stage as a stand up comedian, I remembered what I had gone through (as it was the first time in years I simply wanted to hide in my closet) and thought of the funniest thing the psychiatrist had ever said to me. "You are the most extroverted introvert that I have ever known."
And while the treatment at the hospital was the foundation for my recovery and the continuation of a productive life, it was not the end of this road. I began many years of counselling to look at the issues that had led me to the place where the panic and agoraphobia took hold.
Control.
All of the events and people around me until my mother's death had control over me. I had relinquished my autonomy to people and circumstance. I had been sexually and emotionally abused as a child - in this, my control had been stolen. I had tried to serve my mother, to make her happy, to care for her in her illness and, in this, I had relinquished my self. Some of it had been voluntary and some had been taken but, most importantly, I learned the why, the history, and I learned to forgive - both myself and others. I still learn. It is the path, not the destination, of which my life is made. I learn to understand it and talk about it "with the grace of an adult, not the grief of the child." (Comes The Dawn - Veronica Shorffstall, 1971)
After all this, all your patience in reading this, one woman's story, all I'm really trying to say is - talk. Share your fears with someone you trust. Don't let your fears steal your beautiful life. Find the help that works for you and remove yourself from situations that are unhealthy, for you cannot help others until you are on your own healthy path.
You are beautiful and perfect in your journey. Rejoice in every opportunity to celebrate life in every breath, as you grow and learn throughout your life. Look for beauty in the simple things. Look at the stars in the night sky. Look into the centre of a spring bloom. Smell the ocean. Smile at a baby or an elder. Reach out with a helping hand to someone who is alone or in darkness. Listen. Talk. We are united by life. We are deserving of joy.
With gratitude to all of those friends and health care workers who held up lanterns to light my path when I was in darkness.
My story is simply my story. I am aware that everyone has differing experiences and needs so please do not look at my path as the right path or the wrong path. It is simply the one I took and in the spirit of January 28th being Bell Let's Talk day, I want to share my journey with you.
Remember there are professionals to help: doctors, counsellors and emergency services. January 28th is Bell Let's Talk Day. More info here:
-Gillian Cornwall, c. January 26, 2014
My Mother with a very young Wayne Gretzky.
She had ALS here but was still working at the Ontario Heart and Stroke Foundation
This was at a fundraising event she created.
She was a brave warrior woman who did her best to raise her family
with all the love and resources available to her.
I hope she is at peace now in the arms of loved ones.
