Storyline: Thinking in Autumn Colours
Life is a savage joker. One day you are on the top of a mountain enjoying the beauty of the waters below with twinkling sunrays’ sparkles and crags reflections. The next day you find yourself belittled to nothing laying flat and speechless in a hospital bed. If you’ve travelled along with us in August on the journey described in our storyline “Unfinished Roadtrip” and then followed the storyline “Thinking in Autumn Colours”, you know that this was exactly what happened to Alex.
We thought last year was bad. All we had to do was to sit in our chairs and drink wine, delivered to our door. A lot of it. And stay away from close contact with people, yet distanced gatherings with friends and neighbours in our back yard or theirs was OK. Did you bring the wine? I guess 2020 prepared us for 2021. Somewhat. Now that Alex is immunocompromised, we’ll follow the rules with masks and distancing long after Covid is gone, for the rest of his life as a matter of fact.
There is a thin line between life and death. We all try to hang onto this side for as long as possible. What brought me to this topic is a riveting happenstance that occurred before our trip. But it would be only after Alex was moved to oncology when I linked the two unrelated events.
Preparing for and anticipating our trips with Doranya while still in Covid lockdown, we were buying all kinds of accessories for her from Amazon. I don’t even remember how I got to this book. Perhaps one of the Amazon suggestions. I was searching and buying campervan stuff after all. The cover of the book was a yellow campervan with a young woman and a dog on the roof of it, blue sky and waters at background. “Between two kingdoms”. Many young people these days quit their corporate jobs to travel around the world. What would you associate such a book cover with? I guess it depends on one’s reality. Our minds were in road trips with our campervan. Thus, a quick subconscious conclusion was made by me: Must be a story of someone who was between the kingdom of work and a kingdom of freedom (as they often put it) to travel. And it had to be with a campervan as the cover suggested. Usually I do some research, but chasing the minutes of the day and needing a good road trip book to read during our long-awaited journey, was enough for the book to make it to my order.
We were leaving in about a week. The book arrived just before our intended travel, which as you know was delayed by Alex’s gangrenous gallbladder. When it arrived Alex briefly browsed through it. “Did you know it’s about leukemia?”, he asked. “Nooo! I though it was about road trip in the desert perhaps.” Interesting. Well, I’ll read it anyway since I bought it, I thought, while stashing it in one of the pockets of the van seats. At that point of time our leukemia problem was staring at us from a distant future. It is chronic (CLL), it was discovered during a routine annual check up by our family physician, who told Alex not to worry for some time. Like 10 or even 20 years.
We were happy campers making our way slowly through Quebec to Gaspé and on towards the Maritimes. Enjoying the delightful Quebec delicacies and cheap but good wine, beautiful weather and glorious scenery, there was no time left for reading. If all goes well, we’d be at Saint John New Brunswick for Labour Day weekend. Alas, as you know Alex ended up in the hospital exactly on Labour Day.
It took a village to untangle the mystery he had created for all of them. What exactly was going
on with him? Eliminating cause by cause, there was almost nothing left to consider. Multidisciplinary teams from two renowned hospitals were taking care of his problem. Although he has CLL, his blood counts were good so no one initially suspected it could be the reason. Yet it was his CLL with CNS (Central Nervous System) involvement that caused he vocal cord and epiglottis paralysis.
Suddenly our lives changed dramatically. I was visiting him in hospital during the day and at night I was trying to read to fill the void in our bedroom. The life of a young college student unravelled in front of me. I have a vivid imagination and the words in a story come alive in front of my eyes. I see the characters moving in the described environs.
At our age, death is not that far from the next corner… But when you are twenty, you are invincible. Most are. Do you remember thinking of death at that age? I don’t. Unless of course one is in a war zone, where life has no value.
I saw the annoying rash on her body; I lived and laugh with her when she fell in love; I then saw her in the hospital clinging for life. Her leukemia of course was very different from Alex’s. It was acute, one that can kill you very quickly and usually affects younger people. But it was a fact that I was visiting Alex in the hospital during the day and reading about an oncology hospital during the night. I could easily see her IV pole with multiple chemo drugs dripping into her arms. I could see her listless body barely holding to life and her boyfriend holding her hand. I could see him carrying her around their rented apartment when she was out of hospital, just to be admitted back again and again. A story of a very sick young person and her dedicated caregiver (her boyfriend at the time). It is a memoir, a real story of a real person. I story of four years of struggle and survival. After all was done and she was finally back on her feet, losing her boyfriend who stuck with her until she was well and on her own, she struggles to redefine her life. And that’s when she took a road trip across the US, meeting all kinds of people and finding how fragile the boundary between being ill and being healthy is.
And as far as the strange co-occurrence – how often do you buy a random book and shortly thereafter find that the core of what happened to you is described in the book. And even the last name of their hematologists was the same. Was it the same doctor? After all, we don’t know where the career path of Alex’s doctor took him. Is it possible that it swung through a hospital south of the border? It was 10 years ago.
And although at different age and different leukemia, this story was giving me what I needed. A hope. A hope that one day things will be normal again. I don’t know when this day will be. And no one knows, but it will be and we’ll take Doranya to finish the unfinished road-trip and continue with the other ones we had already talked about. Being immunocompromised now, Doranya makes sense even more than during Covid as his shield and isolation from the carefree world.
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