Last year for my birthday, my daughter gave me a gift of the audio book version of “The Five People You Meet in Heaven” by Mitch Albom. I often think about the messages of this book, and on another by Mitch Albom entitled “Tuesdays With Morrie”. If there’s one upside to a slow demise, it’s the opportunity to reflect on one’s life experiences. Where have I found my purpose? Did I find it at all? Did my actions during this lifetime make any difference?
Before I go on, I’d like to make it clear that I’m not looking for answers to these questions from anybody other than from myself. I’m not seeking validation, this post has other reason for being written.
Should I have the privilege of ending up in heaven, there are a few people I’d like to meet up with again. One is a woman I knew many years ago for a relatively short time, I’ll call her Sarah.
When I had just turned twenty (just a few months older than Suzanna is now) I found myself having trouble walking. My legs would buckle from underneath me at the most inopportune times, I was often feeling weak, my balance was off and I was experiencing odd vision problems combined with episodes of vertigo.
I was at the time attending my second year of university. It would have been reasonable to suggest that stress might have been a factor, I’d not had any financial support to attend school from either my family or from student loans (thankfully the rules have since changed, at the time even though I’d already been living on my own for several years and was completely independent, my father’s level of income as reported to Revenue Canada rendered me ineligible for education loans). I was not only attending school full-time, I was also working a minimum of forty hours a week waiting tables at a pizza place to make ends meet. I’m not sure how he even fit into my life, but I was also maintaining a relationship with a boyfriend who’d been an important part of my life for the previous two years.
After a few visits to my doctor, he determined that we were dealing with more than just exhaustion. I was admitted immediately to the hospital for tests and observation. I’ve previously mentioned that I’ve had health issues throughout my adulthood; this is where it all began. Who is to know whether this was the early manifestation of Erdheim-Chester Disease, I suppose an autopsy will offer more information as to the history of this illness in my body.
As is the case now too, hospital beds were scarce and the only spot that could be found was in the pediatric ward. Not having any private insurance, I ended up in a four bed unit. Two of the other patients were in their early teens; the fourth occupant was another adult who’d also landed in the kids’ ward thanks to a bed shortage.
This woman was in her mid twenties, blond and slight, and the day I’d arrived had just come out of major surgery. Obviously in a great deal of pain for several days afterwards, it wasn’t until later in the week that I’d learn more about her. I’ll call her Sarah to honour her privacy.
Sarah had a doting husband who would be at her bedside as often as visiting hours would permit. Other members of his family would often stop by, hoping that they could tempt her appetite with delicious treats.
I’d learn, once her pain had subsided a bit, that Sarah had cancer. She was a DES daughter, the cancer brought on by her mother having been prescribed a drug during pregnancy that had been believed to lessen the chances of miscarriage. It was discovered in the early 70’s that this drug was linked to a high rate of cancer in the daughters of these pregnancies. Sarah was one of the very unlucky ones.
She and I ended up being in that hospital ward together for almost four weeks. It’s not important to this story, but I was diagnosed with probable relapse/remitting type Multiple Sclerosis – a diagnosis that I carried for over twenty years until ECD was confirmed. Those weeks in hospital consisted of multitudes of diagnostic tests with plenty of time in between them waiting for results. During those long hours, Sarah and I shared many long and complicated conversations.
Sarah had had a radical hysterectomy in hopes of removing all the cancerous cells. Her time spent in the hospital was in recovery from the surgery with no further treatment plans, ultimately she wanted to go back home to the tiny apartment she shared with her husband.
To ease Sarah’s discomfort, the nurses would draw a bath for her and Sarah would invite me to keep her company at the side of the tub. She in the bathwater telling me all about her life, having a few years on me I thought her worldly and wise and was honoured that she trusted me with the details of her life. Looking back, there were so many similarities in our life experiences that it feels as if we had been destined to meet.
Back in our room things were different. We were kitty corner across from each other, communicating with the other patients in the room was difficult. Between facial expressions, hand gestures, and occasionally with hand written notes passed between us courtesy of the nurses our friendship strengthened. This is of course well before the time of texting and emails, I can only imagine how furiously rapid the communication would have been had today’s technology available at the time.
Once we were both released from the hospital, we kept up our relationship. In the first few months, I would visit her and her husband often. Sarah loved to knit, and would always have her hands busy with her latest creation as we caught up. She, her husband and his family were a welcoming clan; I was often invited to family events with his parents and siblings.
A few months later I raised the white flag on my education. I’d fallen too far behind in my classes after a month away, and realized that there was no possible way to maintain both full time school and full time work. I left university, and with what was remaining in my stash of accumulated education funds I set off to backpack by myself across Europe.
My first destination was Paris. A city I wish I’d had the opportunity to get to know as well as I came to know Toronto, but I’m grateful I got there at all. Three times in fact, the second trip being important to this story. On my European adventure I also visited my mother and her boyfriend who were living in Italy at the time, and stopped in to spend time with relatives in Germany too. The rest of the time I spent getting the best possible value from my Eurailpass (do they still have those?)
After some months I returned, only to find that my boyfriend of close to three years wanted to end our relationship. Absence doesn’t always make the heart grow fonder, and in hindsight I can’t blame him, we were on very different paths. His well defined, mine uncertain.
For awhile I felt afloat, not knowing what road to follow. Wallowing in my uncertain future, I abandoned many friendships. Including the one with Sarah. There would be the occasional phone call and she’d often invite me to visit. I rarely did. Sarah was not doing well and I was afraid to see her, afraid that I’d say the wrong thing. Confident that her loving husband and his wonderful family would be looking after all her needs, my excuse was that my visits would exhaust her.
Jump forward another year. By this time I’d taken a course to be certified as a travel consultant, was working for an agency and in a relationship with the man that would become my first husband, and Suzanna’s father.
Professionally I was doing well. The pay was lousy but at the time the travel benefits for agents were fantastic and I was taking full advantage. Through an incentive offer at work, I’d earned two weekend trips away, one to London, England and the second to Paris. The fact that they were separated by only three days back in Canada in between seems in hindsight ridiculous, to my early twenties self – it was adventurous and beyond exciting.
After crossing the Atlantic four times in the space of eleven days, I came back from Paris giddy, but thoroughly exhausted. Yet as soon as the plane touched the ground I felt something nagging at me, I couldn’t put a finger on the reason for the uneasiness.
I made my way back to my apartment, and for reasons I’ll never understand yet am so grateful for, I opened up that day’s Toronto Star and was drawn to the Death Notices. There was Sarah’s name; the second night of visitation at the funeral home would be drawing to a close in less than an hour and a half. I quickly changed my clothes, splashed water on my face and headed to midtown from my northwest Toronto apartment.
The look on Sarah’s husband’s face as I entered the room is still as clear as can be in my mind to this day. He rushed over and hugged me so tightly, and told me that he’d been trying to reach me for over a week, but didn’t have the correct phone number. Sarah had wanted to tell me herself that her death was likely to occur within a few weeks, that she’d wanted to see me before she died.
Rarely a week goes by that I don’t think of Sarah. After more than twenty five years it still rips at my heart that I’d let our friendship lapse, that I wasn’t there for her.
I pray that I do get to see her again. That’ll I’ll have the chance to tell her what she’d meant to me, that I loved her. That I was scared of losing her and avoiding her was the only way I could handle my sadness at the time.
I pray that if I get the chance to see Sarah again, that she won’t be holding resentment against me for not being there for her at the end. That she’ll allow me to tell her that she mattered, and that she taught me lessons that continue to slowly sink in to this day.
Although I never knew Sarah as a “healthy” person, I remember her for her dignity, inner strength and wonderful sense of dry humour. I’m also grateful that I had the opportunity to see her stubbornness, to learn what sorts of things annoyed her (including me at times!), and to hear stories of her childhood that helped her become the Sarah I only came to know in her last years.
She was so much more than just her cancer. The reality is that I’d never have met her if it hadn’t been for her illness, but she let me see beyond that.
I’ve wanted to write about Sarah ever since I started this blog, I’m not sure why now seemed to be the right time.
I tell this story not because I want to make anyone feel guilty if they’ve been uncomfortable about getting in touch or visiting, I tell this story because I’ve stood in the shoes of being overwhelmed by the reality of an illness relentlessly attacking someone I cared about.
I can’t predict with any certainty how I’d react if someone else I cared about was diagnosed with terminal illness. I’d like to believe I’d go about things differently, but even being in the position I am now - I just don’t know. That’s as honest as I can possibly be on the matter.
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