Originally presented at the 7th Annual Stroke Conference in Portland, Maine on May 21, 2014

I want to talk about your patients, the people in the shadows, out of the light, on the verge of darkness, those in the penumbra of life, a shadow of their former selves, even for a short time. And I want to talk about their families.

When I was a child, the father of one of my friends, a storekeeper and neighbor of my grandparents had a dropsy face. He could not walk fast. He could not smile. Or, if he did, it looked to us like a sneer, an unintentionally evil look. My grandparents spoke of it as if it were a mystery, something he couldn’t help, but something that took Mr. Seeley out of the mainstream of the social life of Ashland, Maine, such as it was. Through the prejudices of an 8-year old girl, I never could warm up to Mr. Seeley, even though he was my best friend’s father. He reminded me of Vincent Price. Of course, I hadn’t known him before his stroke.

Fast forward 57 years.

October 1st, 2013

October 1st last year was an ordinary day. For me, a long one, but par for the course. Good weather prompted me to take a detour before leaving Augusta to go home, and to visit a friend in hospice care at Togus. I later worried that that delay could have cost my husband’s life. I was an hour later than usual arriving home. So, it was not me but my brother Paul who happened to come by the house that evening and find my husband on the floor, unable to regain his balance, to speak intelligibly or to call 9-1-1.

No one could say how long he had lain there. Pangs of guilt. It should have been me. He hadn’t called me in the afternoon as he so often did. He hadn’t answered the phone when I called. I should have known.

At the ER, I learned, of course, that my husband had had a “Cerebrovascular accident” “Accident,” I thought, “what an interesting term. What kind of accident is this?” “Did he fall downstairs?” “Did a car hit his brain?”

Honestly, what other medical condition do we refer to as an “accident,” other than an unplanned pregnancy?

He had had, of course, a stroke. The fourth leading cause of death in Maine. In 2009, there were 640 deaths in Maine and 3,656 hospitalizations due to stroke. Maine has had the highest stroke death rate among all New England states. And stroke is one of the major drivers of health care costs in Maine. I can certainly see that now. Recovery is such a long, slow and unpredictable odyssey. And so many people in Maine are uninsured to boot.

My husband didn’t smoke. He was not overweight. He never drank a lot of alcohol. His diet hasn’t been the best, but he didn’t eat a lot of fatty foods or junk food. His cholesterol was always good. But he has always been hypertensive. And he is male, he is over 70 years old and is less active than in his earlier years when he was an avid tennis player.

On the way to the ER the doctor on duty called my cell: “How many hours ago did he have his stroke?” thinking that if it were an ischemic stroke, she could administer a miracle clot-busting drug and prevent his death. Frantically I called around to people I thought may have seen him during the day, with no luck. There was no way to say he had collapsed either five hours or five minutes before he was found. That could have made all the difference in the world. But, then, a CT scan showed a hemorrhagic bleed. So the miracle drug would not have helped; in fact, just the opposite.

Stan stayed in the hospital for 5 days and they got his blood pressure under control, his hydration, his mobility. The relief was palpable. Then, suddenly, we had to make choices. Rehab — What’s best? Who do you call? Who do you ask? Is there a Consumers’ Report that tells you which facilities are best? How and where could we, the family, best help him? Quiet due diligence. The decision. And the justification.

There is no book that tells you how to cope, or what to expect, with a stroke, although there are books written about the experience of a stroke&emdash;Kirk Douglas’ “My Stroke of Luck” and Jill Taylor’s “My Stroke of Insight,” for instance.

When dealing with stroke, there is no pill that will make it better. No cup of liquor that will comfort you. No roadmap or clock that tells you where or when things will begin to be okay again. Some days it is like a constant purgatory. The patient is in limbo, and the family is backstage, waiting attentively with flowers and cheers or prayers and long black coats, ready to make changes, unable to know which way to turn, all life’s plans on hold.

When you break a bone, you know the bone will heal. You will have some pain. But you will walk again, write again, dress again, drive again. There is an end date to your recovery.

When you have your appendix out, in a certain period of time you will recover. You will be sore. But you will heal.

When you have a stroke, you must then predict the unpredictable. Your recovery is not measured in days passed or in stitches removed or in hallways walked.

Speech may come and go. Memory may flourish or flounder. Your muscles may work, or not. You may fall without warning. You may feel funny and weak and worried. You may be depressed because you have lost control over your life. And your loved ones may become depressed because they cannot help you except, seemingly, in the most miniscule ways, partly because you are depressed. And depression, it seems, can be contagious.

Everybody asks you how he is. You cannot answer. You become the ‘reassurer in chief’ for the rest of the family and the treasurer in chief for the family finances. You interpret the medical information. You keep everybody informed. You give them guarded hope. Hope you do not always feel yourself. But you are the strong one. The informed one.

Privately, you try to figure out what the insurance is going to pay for and what it won’t. But the papers keep piling up and they are hard to read, to sort out, even for a lawyer. You go through your husband’s papers, try to figure out what he left undone, what is paid or unpaid, what matters can be put off. The disorganization of someone who you later figure has probably had TIAs in recent months is quickly demonstrated. You draft letters and answer phone calls.

This was not my first encounter with strokes.

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