The sun rose. I was just finishing the night shift and was heading home. As I crawled into bed that morning, I passed Sue just getting up from that same bed.
She told me of her plans for the day. Pick up some groceries and then ride her e-bike up to her doctor’s office for a regular check-in around her medications. Little did I know when I went to sleep, nothing would be the same again when I awakened.
It was December 14, 2012 around 5:00 p.m when I got up from my sleep. It didn’t take long for me to notice that something just wasn’t quite right. I asked Sue about her doctor’s appointment and how it went. She couldn’t remember. And, I discovered, she couldn’t talk. She could only say one or two words and it was through trying to force large puffs of air over her lips. It actually looked painful. “We need to go to the hospital, ” I said to her. She adamantly said “No” without any seeming problem with that word! It took awhile but eventually I convinced her to go and off we went to East General Hospital.
They had a new system we were unfamiliar with for triage. Take a number then take a seat in the red section chairs until a nurse comes out to attend to people in this sit-down line-up. We wait. And wait. And wait. Finally a nurse comes out to triage the now long line-up where we were third in line. She gets to us and I stand up and say “I think she’s had a stroke, ” while pointing at Sue. The nurse looked at Sue who was slumped over and not looking so well and she quickly ran off, returning with two other nurses. Before I knew it, they had thrown Sue into a wheelchair and they were racing down the hall. By the time I sprinted to catch up, they had a heart monitor strapped to her, intravenous stuck in her hand and a doctor was checking her eyes with a flashlight. It was then that I realized this might be a medical emergency and perhaps I should have phoned for an ambulance. I felt embarrassed and ashamed.
It wasn’t long afterward that Sue was rushed in for a Cat Scan and we were told she had had a stroke. It was past the four hour mark where they could chemically intervene. It was believed it had happened in the morning on her way to her doctor’s appointment. She got lost on her e-bike and couldn’t remember anything since then. They were sending her home since she could swallow and the hospital would follow up with medical triage over the next week. I left with a handful of appointments to attend at the hospital. We were both shell-shocked and neither of us really understood what this meant nor the magnitude of a stroke. I had no idea how bad things really were. We got home in the middle of the night and we went to sleep. The next day I went to work. And the next. It wasn’t till I had a day off that I realized things weren’t right. Besides the fact that Sue couldn’t talk, she couldn’t tell time and she didn’t know how to prepare any food, and she couldn’t seem to remember anything except her childhood. I found out she was incapable for caring for herself.
Our first visit confirmed some of my worse fears. Weakness on the left side of her body, difficulty swallowing, she couldn’t speak sentences and she had no short-term memory. They said she wouldn’t be able to learn anything new because learning happens in short-term memory and that was damaged on her. They called it a mild stroke and assessed Sue as being just on the cusp of the scale for cognitive impairment. This felt anything but mild! We were sent away with this information, to fend for ourselves and figure things out. They really let us down. But I had read on the internet that with strokes, early intervention is the best prognosis. Treatment is most beneficial in the first six months and up to a year will be the most progress. After that, it is marginal up to the two year mark. So my first call was to Shoppers Home Health Care. They were so helpful, directing us to occupational therapists and telling us about adaptive devices programs for a walker for Sue. So began the process of setting up treatment resources, the stroke rehab clinic, an occupational therapist to help with railings and such in our home and a speech therapist.
In the meantime, while we waited for these resources to be set-up, things got worse. Every day we saw the deficits, more and more. Sue couldn’t read. She’d forget the line she just read or where she was on the page. She didn’t know any math. She didn’t understand the concept of time, an hour or a day or a month or a year. She couldn’t judge speed and she found the world, pedestrians and cars, moved way too fast. She couldn’t handle any noise, becoming extremely sensitive to sound. She couldn’t understand people’s facial expressions anymore, and so she saw everyone as very threatening and she was suspicious of people. She just didn’t understand the nuances of relationships anymore. She cried when she was overwhelmed, tired or scared. And she said “I’m stupid” a lot as she felt the difference. She knew the difference.
What followed was the rage, the frustration and temper tantrums. She knew there was much she couldn’t do now that she used to do easily and she would become angry. And then the suicidal thoughts and impulses. I was scared. She was impulsive and incapable of understanding, She was at risk. I was so scared, I thought I might have to apprehend her! But we got medication and were told it was a natural and common reaction. Apparently, stroke is a brain injury and many chemicals get released when the brain is traumatized that cause this reaction. They said it could take a year or two to settle itself out, but at least on medication, she was safe. I actually had times when I thought I’d have to institutionalize her as there were times I couldn’t manage the behaviours. I went to Alcoholics Anonymous meetings and cried. I spoke to to Mom and cried. I spoke to my family on the phone and I cried. And then when I was done, I’d roll up my sleeves back at home and look after Sue. It was the only thing I could do. I was there for her. She needed me.
Even though this was a horrible time in our life, there was hope, strength and miracles that happened all around us. Angels that shared my burden and lightened my load. The people from my running group. They volunteered to ride with Sue on the subway to get her re-acquainted with TTC or to the hospital for one of her many medical appointments. My friends, who when I opened the door, gave me about two months of single prepared meals for Sue to pop in the microwave when I was at work. And a crock pot with a timer so Sue could learn to cook again, safely with a timer, least she forget it was on. Our friends from the camera club who continued to take her to the club, on outings, and to offer her social activities and friendship. My mother, who without her example of selflessness, I might not have risen to the occasion. She had shown me throughout my life how to take care of people. She had cared for her mother, and then her father and eventually my father. She listened to me, let me cry and would just say ‘There’s nothing we can do about this situation so we need to just deal with it. It’s time to cowboy up.” And lastly the wonderful people of AA who checked in with me each week and let me cry on their shoulders. And also for Toni, who shared with me that she had a stroke 8 years before, a bad one. I had known her 5 years and only for her having told me, I would never have known she had had a stroke. She gave me hope through example that things would get better.
Sue worked hard. I mean really hard. She called herself “Norman” and it wasn’t in a loving way that she named herself such. Norman, as in ab-normal, represented the person whom she had become and whom she hated. Physically feeble, not capable and ‘stupid.’ She worked and worked and worked. She went to rehab and walked the track with a walker. She worked with the speech therapist and sang songs to try and get some rhythm to her speech. She took up archery (that’s another story,) but it helped her with focus, balance and strength. She did math, reading and writing activity books that I bought for her. I remember how ashamed she felt when she saw the age group for kindergarten written on the covers. I also remember how proud she was when she finally reached the third grade and beyond. And she improved. We had hope. They say the first year is when the majority of change and recovery happens. It’s called neuroplasticity. We learned about stroke and neuroplasticity and how the mind has an infinite capability of recovering. It just requires time and work.
What was once a crisis eventually became the new norm. I stopped crying, Sue stopped raging and we adapted to the circumstances we were facing. But I do remember the year mark, coming and going. I had held on to the idea that somehow she would be totally healed and be her old self in a year. In that time, I had meet a few persons who had recovered from stroke and showed no signs of it. But at a year, I remember looking at Sue and thinking “This is it? I will spend the rest of my days looking after her?” Wow. Don’t get me wrong. There had been some nice changes that came from this. All history was erased. Any grievance, hardships, anger or resentments Sue had ever felt towards me was gone. She was incredibly loving and giving and present in a way she really had not ever been before. But we had a relationship of dependence. One where I was like a parent looking after a child. She just wasn’t capable still of looking after herself. I worried about if something should happen to me and I started to make plans just in case. And Sue just kept working, working and working.
I’m not sure when it happened but I know when I became aware of it. Around the two year mark. I realized I couldn’t really tell she had ever had a stroke. I mean, I could still hear it a bit in her voice, as that never fully recovered. And I could see it when she was tired, her balance was bad, she’d drag her left foot and her speech would become stilted. But if I had just met her, I might not be able to tell. Don’t get me wrong. She still had difficulties with short term memory, which I used to my advantage on occasion, “Don’t you remember honey, I washed the dishes this morning so its your turn now.” She also still couldn’t do math and unlike what your mother told you, one can survive just fine without math. Except sometimes you might get the wrong change back and not know it! But in place of what she lost was some qualities and characteristics she had never really possessed before, or at least not as much. She’s more child-like in her relationships, open, innocent, accepting and non-judgmental. She’s able to set a goal and accomplish them. She taught herself braille by consistently doing it for about five hours every day, because to miss a day, she might forget. Now THAT’S focus and singleness of purpose. She became much more spiritual and connected to a higher power in her life. And she’s become a more loving and kind individual with compassion and empathy. In the end, I can see that my life has been enhanced because of what it has given her, and in turn, us.
So when I woke up that morning, I didn’t know that my life would never be the same. The biggest gifts I received was the experience of witnessing up close, the triumph of the spirit; to feel and know there is a God in our lives and to have that unreserved faith and belief that in the end, we would be okay. I was shown there are miracles through peoples actions and intentions and I saw many acts of love. I learned to have hope, because with hope comes resiliency. And lastly, I learned the sun will rise again. It’s a new day, a new beginning and another opportunity for growth and healing.