Six years ago today I went to St Joseph’s hospital in Toronto for a life saving surgery with an amazing doctor, Dr Richard Hart. There are so many stories that I can tell because when someone is sick, it isn’t just the experience of that person, but everyone around them — those who love that person deeply. I could tell you how Rachel was so incredibly strong, or how Max was falling apart and terrified, so much so, that he believes his personality was changed by this event in our lives. I could tell you how singularly focused Jeff was on protecting all of us to ensure we were cared for and safe and then the struggle he had watching me like this. I could tell you about the fear that my mother experienced but never, not even once, showed it to me. But the only story we can tell, is the one where we are at the centre because we can never truly know another person’s mind, experience or perspective.
On the morning of December 7th, 2011, Jeff drove me to the hospital early in the morning. There are a few images that hold strong in my mind of that day.
As we left, we backed out of the driveway and Rachel and Max stood in the doorway waving goodbye. My mother was with them ensuring a smooth transition. She is ALWAYS there in a crisis. I remember backing up and taking this picture and wondering to myself but not saying out loud to Jeff, “Will I ever see them again?”
I didn’t want anyone to worry more than they already would be so I said nothing. I had written letters to Jeff, Rachel, Max and my parents telling them how much I love them and thanking them for the love and care they had shown me over the last few months as I suffered through multiple tests, attacks, profound pain, exhaustion and stress. What I didn’t tell them is that I wrote those letters not just to thank them but so that if I did not make it through, they would know how much I loved them and appreciated all they had done for me.
The illness started, we think, when I was pregnant with Max because that is when the symptoms started. Gall bladder attacks started after I had him. I had a few attacks over the next eight years but I could manage and the pain seemed to dissipate after a few days.Other symptoms made sense as part of a syndrome once I was diagnosed eight years later. Then, on July 17, 2011 (I remember the date because it is my parent’s anniversary) I had the worst attack. I knew it was my gall bladder but what we didn’t know then, and wouldn’t find out until they actually did the surgery, it was also my bile duct, my liver which had an abscess, and other complications with my digestive system. I had become jaundiced, had multiple tests including two endoscopes to determine the blockage and ultimately had a stent put into my bile duct to allow flow of the bile. In total, between the day of the attack and the surgery I went to 6 hospitals, 8 doctors and finally landed with one of two doctors in the Toronto area who perform the surgery I got which is called a hepaticojejunostomy.
Two weeks before the surgery I had another horrible attack. I never knew what set them off. It couldn’t be what I ate because I learned quickly to avoid most foods. From July until my surgery I ate mostly homemade apple sauce and no fat pressed cottage cheese protein with the odd batch of Trini pumpkin made especially by my friend Rashma. I lost almost fifty pounds between July and December. The day of the attack my secretary, Brenda, begged me to leave my car at work. I was clearly not thinking rationally. I told her I would be fine but I am certain I did not look fine. I would turn green during an attack. The drive home was about 20 km and I prayed to God the whole way home to get me there safely. Brenda had called Jeff and he met me at home. The pain was so intense that I began convulsing uncontrollably. He called my mother and an ambulance. My sister, Carolyn took Rachel and Max to her house so they wouldn’t see me in so much pain. I was terrified they would have to do emergency surgery and I knew my doctor at St Joseph’s Health Centre was the one who had to do it and there was no way they were taking me to him. Thankfully, I managed to get through the night with no surgery, just painkillers.
The doctor and his team would remove a good portion of my liver due to an abscess and infection. My bile duct would be cut in two and a new passageway created so that stones my body creates would be able to pass through my system rather than getting stuck in the duct.
After the surgery I had an NG tube that would remove garbage from my stomach. I had an epidural for the pain for a week as well as a morphine drip. I had IV antibiotics because abdominal surgery can often lead to infection because it is the area of the body with the most bacteria. I had two infections that led to months of nursing care in my home and the inability to go into a shower for a month following the surgery.
I was in the hospital for 8 days. I remember visitors but not everyone. Drugs make our memory so blurry. I knew Frankie and BJ were taking the kids out for dinner that first night. Dara would take them the second night but said the first night she needed to be with me at the hospital. I know that Lisa and Rob took the kids to Snakes and Lattes one night and someone brought the kids to see me the second night. It must have been Jeff but I am not sure — it could have been my brother Mark who came into town to be with me during this time. Each of my siblings came to visit me with their kids at least once during my eight days in hospital. There was one friend who came to see me even though her own father was dying in another hospital. My memory of Jeff during this time is sitting in the room, looking at his phone, but NEVER leaving my side. The first night the nurse told me to tell my family that only one member should call to see how I was doing. Apparently Jeff did not sleep at all that night. He called the nursing station every hour on the hour to see how I was.
Every day my mother and Jeff would be by my side. At one point, I stopped talking. The NG tube was causing horrible irritation in my throat and it was easier not to speak. On the third night in the hospital, it was the worst night of my life. They had briefly removed the NG tube because it had stopped draining whatever waste was coming out of me. I was woken by a horrible feeling of nausea and pain and then whatever had stopped draining through the tube came out of my mouth. I could not stop vomiting. I filled bucket after bucket. I woke up the elderly woman who I shared the room with and I remember apologizing to her for waking her. They had to put the NG tube back in while I was awake. That was awful. When the nightmare was over, they left me to sleep but I couldn’t find my nurse button or my morphine button. I couldn’t reach my glasses either. It was impossible to turn or twist but I could reach my Blackberry. I texted my mother and told her I needed help and could she call the nursing station. My finger nails were black with the poison that had come out of my body and I must have told her that because at 4 am, my mother walked into my room with wash clothes, baby powder and a nail brush.
From that moment on, my mother didn’t leave my side. She changed my sheets, did daily sponge baths, used dry shampoo to “wash” my hair. She would be at the hospital for fourteen hours a day caring for me. I got moved to the only private room on the floor with my own bathroom.
After eight days, they released me. I would return three days later with an infection and they would have to reopen my incision and put me on more antibiotics. I had this amazing nurse, Taju, who came each day to care for me. Dealing with the infection was incredibly painful and as she would clean it, tears would quietly fall down my face. I had great difficulty going to the bathroom. My body wasn’t working yet and even walking and sitting was a challenge. Jeff would help me get out of bed in that first week and support me going to the bathroom. He was amazing.
Slowly I managed to move downstairs and the kids would sit with me on the couch. I would read all day and go for walks around the centre of our house. I would blow into the air machine to avoid pneumonia. Then I would sleep. Repeat. It went on like this for about six weeks.
My mother came by each day to wash my hair in the sink. She did my laundry. She cared for my kids. She cleaned my house, She helped me with the bandages. She made sure there was food in the fridge for the kids. She did everything.
I was off work for four months while I recovered. I had so many visitors — friends who made food for us, friends who took the kids out, friends who just sat and would make me laugh and then cry because the laughing hurt so much, friends who invited Jeff and the kids out for holiday parties and dinners so I could rest and Jeff would have the pressure off of him and friends from work — caretakers, secretaries, principals, teachers, and superintendents I had worked with to tell me to take the time I needed and that it wasn’t the same without me.
After four months, I returned to my school, Wismer PS in Markham. The staff had arranged a beautiful homecoming with individual messages from each student all over my office including a box of tissue that was there for my tears when I saw the outpouring of love for me.
I don’t know why I felt compelled to tell this story now, after six years but I can tell you this. When you are sick like that you learn a lot about who you are, what your relationships mean, and what is most important.
I am so incredibly grateful to have the colleagues, friends and family that I have. It has given me a perspective in my life that has served me well. I am able to use this experience to help me see what is important, to know my strength, to see what a love is in a deep and profound way. It reminds me of the power of the statement “it takes a village to raise a child” because my children were surrounded by the love of my family and friends throughout this ordeal. Brené Brown talks about foreboding joy and says that the opposite of love is not hate but fear. She says that we cannot experience joy fully because we carry the fear that it will end.
For me, it is through that darkness that I have learned that I can get through it. I see that a friend brings you healthy things to eat, a friend who puts everything aside but she just has to know you are okay and then she is okay, a mother who washes your hair when you can’t, a sister who takes your children when you need it so that there is one thing you don’t have to worry about in that moment, a child who loves you so deeply that they come to know themselves through their love for you, or a husband who sits by your side without a word but a watchful eye is the greatest joy one can ever experience.