During the last seven years of my wife Maggie’s life, she suffered from neurosarcoidosis, a chronic autoimmune disease in which the body’s immune system attacks the central nervous system. Each episode of inflammation caused irreparable damage to her ability to function independently. The drugs she took to manage the neurosarcoidosis caused Type 2 diabetes, weight gain, water retention, diabetic peripheral neuropathy and electrolyte imbalance. They also suppressed her immune system and affected her kidneys and liver. Her doctors prescribed drugs to manage the side effects.

Maggie also suffered from cardiovascular disease (she had four strokes in less than a year) and pulmonary hypertension, all of which required more drugs. The neurosarcoidosis robbed her of memory, her ability to converse, her ability to work and to drive, and sometimes of time and reality. The strokes sapped her strength and her balance. By the end of her life, she was taking three drugs for neurosarcoidosis, two for blood pressure, three anticoagulants, four for diabetes, one for acid reflux, two for cholesterol and one for water retention.

Still, with all the medical burdens Maggie bore, with all the indignities she suffered while being poked and prodded and X-rayed and MRIed and CAT-scanned, what she couldn’t abide was her loss of independence. This wasn’t simply — or merely — losing the ability to jump in the car on a whim and meet friends for lunch.

She had behind her a lifetime as a vibrant, inquisitive, gregarious human being; of helping others as a political activist, an ASL interpreter and a social worker; of taking care of friends and family. I think she felt the circle of her world tighten around her as the radius of her independence decreased. She spent more and more time in her recliner, which seemed to become the centre of that circle.

The author and Maggie in Brooklyn, New York, in January 1989.

I was angry that Maggie didn’t fight back against the tightening of that circle. I confronted her when she refused to take her pills, when I found napkins full of them stuffed behind the recliner seat cushion or hidden in piles of her clothing, when she wouldn’t go for a walk to get a bit of exercise, when I found pieces of candy stashed in hiding places she probably forgot about, when she came home from a dinner so drunk she could barely stand.

Why did you…? How could you…? Don’t you understand that…? The doctor told you… I don’t know what I’m supposed to do…

I made myself the victim or, sometimes, I’d even turn her love of her grandchildren into guilt.

Don’t you want to see your grandchildren grow up?

During my exasperated, frustrated rants, she didn’t say a word and glanced at me only occasionally. Even when I told her over and over that I loved her — even when I pleaded with her — she remained silent. If, after I was all ranted out, I knelt next to the recliner, held her, and said, “I love you,” then she would reply, “I love you, too.”

What does “fight back” mean when you’re saddled with an incurable disease whose cause is unknown and whose progression can only be “managed”? Maggie was not going to get better — at best, she would not get worse. I wanted her with me, whatever her condition. Maybe “whatever her condition” was not a quality of life she wanted for herself. Did I, who was not ill, have the right to demand that she fight back? By doing so, was I claiming that I would have fought back if I were in the recliner, in effect telling her that I was better than her? And, perhaps most important of all, by making her feel guilty about not doing more to take care of herself, was I reinforcing in her mind just how much independence she had lost? Maybe not taking her pills was her way of asserting what little independence she had left. Maybe hiding candy was her way of squeezing little bits of pleasure from a life that seemed less and less her own.

I justified my pressure on Maggie by telling myself that her neurosarcoidosis affected her decision-making ability. That was true. But was it entirely true? Maggie made plenty of decisions that seemed reasonable: She decided she wanted to go to the dollar store; she decided she wanted café........

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