From Alison:
Don had a stroke May 18th. We wrote about it here.

We’re not complaining. What follows is our observations, a reckoning, a truth-telling, but it is not a complaint; it’s just the story of how it is now. What is as it is.

Four months later from the outside it looks as if nothing has changed. Our life at home in Vancouver goes on in much the same quiet way that it always has. And yet everything has changed. We are no longer living the same life that we lived pre-stroke.

I can’t rely on Don anymore, not in the way that I used to. He was my rock, I was the adventurer who helped Don fly, while he helped me stay grounded – by taking care of business, household accounts, getting things done, researching the practical things needed for travel while I researched all the exciting things. And he was Map-man. He had these mental maps, particularly of Vancouver, so I would follow him without hesitation because he always knew where he was going whether walking or driving. Twice since his stroke we’ve emerged from the Skytrain station and I’ve blindly followed him as I would have in the past, only to discover he no longer knows which way to go. It’s a tiny example, and not important; we laugh about it. His mental functioning has improved enormously, but I still feel I’ve had to pick up the reigns in a way I haven’t had to previously, and even though I can now hold them loosely I don’t know when I’m suddenly going to have to take up the slack again. This is the knife edge. More than ever before we are aware that at any moment things can change. It’s a whole new role that had me at one point literally collapsing. Going deep into the physical manifestation of my knee and hip buckling beneath me I came to understand, and release, the emotional toll of bearing this new burden, and of holding it as a burden. Don improves every day, and I do too as we adjust to these new roles, to this new way of being with each other, to this new phase of life.

Our stress has been compounded by the discovery, right around the time of Don’s stroke, that I have a health issue that puts me also at risk for a stroke. So I’m on a new medication that messes with my head. The medication affects the brain’s ability to produce serotonin, one of the feel-good hormones. Well these days I need all the serotonin I can get, so I’m still adjusting the strength of the dose to be effective enough but not make me tired of life. And of course I’m now taking all the supplements that help the brain produce serotonin. What a juggling act! What a journey we’re on. It’s a whole new kind of adventure.

The biggest outward change is that it is no longer safe for Don to drive so I do all the driving. I was nervous at first, but have gradually learned to relax, and I realized I was far more relaxed when driving alone. Bit by bit I have come to remember that I am competent, that I am capable. But whenever Don was sitting beside me in the passenger seat I’d get stressed. Initially he was mentally still driving, trying to instruct me; he was sitting there being all judgey about my driving! We shouted at each other a time or two, and now things have settled down. We’ve both learned to relax into these new roles. At least, if Don hasn’t, he knows better than to say anything about it. We laugh about that too.

Mentally he’s not as sharp as he was but he had such a huge cognitive reserve capacity that most people wouldn’t notice. He was so darn smart to start with that the loss of a few neurons is neither here nor there. Of course he has his own take on this – it’s been a huge adjustment for him. He has gaps in his memory, searching for words. This morning he asked how to send me a document, which in the past would have been automatic. We never know until it’s needed what he remembers and what has gone.

We have been getting our affairs in order in more detail than previously. For example we now have detailed lists for informing people when either one of us dies – who gets an immediate phone call, who gets an email, etc. And as I write this I know there’s still more to be done – not for us, but to make it easier for those left behind.

From Don:
It has been just over four months since I suffered a major hemorrhagic stroke in the right frontal lobe of my brain. I have no physical impairments, but there has been a significant and persistent deterioration in my ability to problem solve, as well as fluctuating stamina.

The MRI scan also revealed, quite unexpectedly, small holes (micro bleeds) in a number of different areas of my brain. I was referred to a stroke neurologist, and this excellent young doctor immediately increased my blood pressure medication; I can no longer take blood thinners because it would increase the risk of further hemorrhagic strokes. The micro bleeds are puzzling to the neurologist: they could have been caused by an infection or by a cancer, and more tests are still needed to clarify the diagnosis. Since the stroke I get visual illusions in the right visual field of my right eye whenever I read or watch TV for any length of time. In addition to the stroke and the micro bleeds, I have recently begun to have increased problems with hearing, due to water in my inner ear; I have been referred to a specialist for assessment. I will probably need to undergo minor surgery to my heart to further reduce the risk of additional strokes. So much remains unknown or unresolved about my condition.

All of the above has significantly changed my life, and Alison’s life. Apart from it not being safe for me to drive, I’m not as reliable as I used to be, in part because of the variable fatigue, and in part because my judgement is no longer fully reliable. This creates stress, exacerbated because of Alison’s health concerns. My overall functioning has definitely improved but I am more easily stressed than I was before the stroke, and more easily irritated. So we both are less able to just roll with the punches the way we previously were able to.

Despite all of the above, life goes on much as before. We still meet friends for coffee or ice cream, and for dinners. Since my stroke we’ve attended plays and movies and celebrated friends’ birthdays at restaurants. I exercise for 45 minutes almost every morning and walk for an hour or more at least three days a week. I wouldn’t say that I feel depressed, but I do feel less lighthearted than I did before the stroke, because a lot of things feel more challenging.

Before I turned 80 almost a year ago, I had no sense of how much longer I might live, but I felt generally well.  Since the stroke though, not so much.

An unanticipated benefit of having had a stroke at this age is that I have been able to acknowledge that I’ve entered a whole new stage of life, one in which I no longer feel that I need to participate fully. I can more easily say no to things I don’t want to do now, and use fatigue as the excuse. It actually feels like a relief.

From Alison:
We, meaning the vast majority of people, most of the time, live life as if it’s never going to end. Intellectually we know it’s not true, but we don’t live from a felt sense of that. How could we? Being focused on the inevitable end just gets in the way of living, of having dreams and ideas, of making plans, of being inspired, of enthusiasm for life, of exploring, of opening to possibilities. And so we live in a kind of necessary benign pretence.

Probably this is the biggest change. We can no longer pretend. The end of Don’s life will come. The end of my life will come. Him first. Or me. Or together. But the end will come. We no longer fool ourselves. It has been a big adjustment. We are not morbid about it, just honest, realistic. Probably most people in our age group have faced the same, this sense of loss and the grief that attends this stage of life. We both lived in the fantasy that life would always go ticking along the way it always has (even while understanding that it wouldn’t). Now we know it won’t, and this knowing informs our life in a way that it didn’t before. We will both die sooner or later, then those that are close to us will die, then their children, and then their children’s children, and eventually it will be as if we never existed. It’s a sobering recognition. Grief and loss. Grief and loss.

We don’t feel sorry for ourselves. We understand that we have entered a new phase of life and that, yeah, it’s challenging. Whoever said that aging is not for the faint of heart is right. Some days are good, some days not so much, but it’s all okay. We are still very much alive so we go on living, from this heightened place of awareness. We give thanks for all we have, we make meals together, go for walks, out for coffee or meals with friends, have family visiting, sing happy birthday out loud to friends in restaurants. We are aware how lucky, how blessed we are, to live this quiet peaceful life in this quiet peaceful place with friends and family to make us laugh and share love, and to have easy access to nature, to the river, to the forest, to the tiny wild hummingbirds in the forest. All is well.

 

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Last February in Australia – having fun at Skyspace in Canberra. Photos by Julie Garran.








Next post, and many after that: I’ve at last finished sharing all the stories and photos from our time in Greece last year. Now I’ll return to our adventures in Australia earlier this year – museums and galleries and Old Parliament House, my niece’s greyhound, the gardens, the people, boating on the lake, beaches, beach culture, beach villages and cafes, trips to Sydney, and a river close to home.






All words and images by Alison Louise Armstrong unless otherwise noted
© Alison Louise Armstrong and Adventures in Wonderland – a pilgrimage of the heart, 2010-2023