I had my appointment with my neurologist yesterday. He had reviewed the records from NIH, including the MRI that showed “generalized cerebral volume loss and small vessel occlusive disease.” He didn’t seem impressed. He acknowledged that the MRI was consistent with cerebral vascular disease (which I thought was the likely diagnosis) but then said it could be from normal aging, too. Neither was he impressed by the alternative interpretation of my neuropsych report.
He sees no good evidence of brain dysfunction or cognitive impairment. It’s good news. “Come back in a year.”
Marja heard the note of frustration in my voice as I told her about my visit. “Why are you so attached to having a diagnosis,” she asked. Another friend commented: “Sounds like you’re going to have to let go of your ‘self’ again.”
It’s true. A year ago, as I was getting used to the diagnosis of Alzheimer’s, I wrote about having to let go of self and I’ve mentioned it a lot since, for instance, here and here. The Buddhists point out that hanging on to one’s sense of self is a sure recipe for unhappiness because our self is always changing. A year ago I was letting go of my self-image as an intellectual, as the independent, competent one who needed no help. That was difficult enough, for that self-identity had been a long time in the making.
But the self always changes. Now I have to give up the self who is the Alzheimer’s patient, the one who would create much suffering for his family as he declined, yet also the one who is losing his intellectual capacities but accepting it with grace, the one who is progressing steadily toward severe dementia yet not being overwhelmed by the pain of it, and the one who is willing to speak and write about his disease publicly. That identity was an attractive self that I had become very attached to over the past year. It’s hard to let it go.
The Buddhists are right again: In spite of the overwhelming good news of the last several months, I have felt almost cheated, suffering this loss of identity, unable to embrace the good news in all its fullness.
It seems, however, that my visit with my neurologist today severed most of the cords binding me to that old identity. It’s curious, for there was no new news, just a reiteration of what’s been said before, yet I feel much more freedom from that tension between who I am and who I thought I was.
I am certainly left with questions but mostly wonderful news. The question has to do with the cause of my cognitive decline and what it portends. That’s far outweighed, however, by the wonder of it. I suppose it’s that I previously had enough cognitive reserve that my decline doesn’t really hamper me in any important way, and it’s rarely noticeable to others. My cognitive capacity has stayed stable or even slightly improved over the last sixteen months, and there is no reason to believe it will decline further. My brain scans rule out Alzheimer’s. Some other people with documented mild cognitive impairment have stayed stable or even improved, so—while there’s no good explanation—I am no rarity. There’s no bad news here except uncertainty about my future … and who doesn’t live with uncertainty about his future?
The only bad news is my attachment to a self that no longer exists; with a little time I think I can let that one go, too.