Christine Boden in Who Will I Be When I Die? talks about her lapses, fear, confusion. But beyond

this she reflects on her inner experience: Oliver Sacks said ... that Alzheimer’s sufferers don’t lose

their essential selves. True, maybe, but I know I have changed a lot already. I am more stretched

out somehow, more linear, more step by step in my thoughts. I have lost that vibrancy, the buzz of

interconnectedness, the excitement and focus I once had. I have lost the passion, the drive that

once characterized me. I’m like a slow motion version of my old self -- not physically, but mentally.

It’s not all bad, as I have more space in this linear mode to listen, to see, to appreciate clouds, leaves,

flowers.... But am I really still me?

Alzheimer’s [is] a one-way street; true, it’s relatively slow but it is inexorable. Death by small steps.

Friends and relatives lose you by minute amounts each day, each week, each month, each year....

Who will I be when I die?...   If only I had cancer!

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Of course. If only she had cancer she could die like, say, Judith Hardin (in Marilyn Webb’s The Good

Death). Judith’s husband recalled: Judith had gotten so thin, and she had this oxygen tube

attached to her wherever she went, but she was so bright and had such a great sense of humor.... She

wrote letters to [the children] for me to read to them after she died.... We cried a lot.... She was so

inspiring to be around... it was like seeing her off on a great journey, very uplifted and humane.

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Christine has already suffered a great loss but few tears have been shared. Her close friend Karen

promises to remember her, and assures her that actually she prefers the new Christine to the former

driven administrator and super-mom, who didn’t suffer fools gladly. Christine is comforted,

somewhat.

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No person wants to die alone. We each, before we die, wish to weep all our unshed tears and know

they matter to another as they matter to God. The Psalmist says, God keeps your tears in his flask.

Jesus wept for his friend Lazarus, and his love redeemed Lazarus from the grave.

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We don’t want pity, but we know in our hearts we are worthy of compassion. Martin Buber, the great

Jewish theologian, admonishes us not to help out of pity, that is, out of a sharp, quick pain which one

wishes to expel, but out of love, that is, out of living with the other. He who pities does not live with the

suffering of the sufferer, he does not bear it in his heart as one bears the life of a tree with all its

drinking in and shooting forth and with the dream of its roots and the craving of its trunk and the

thousand journeys of its branches, or as one bears the life of an animal with all its gliding, stretching,

and grasping and all the joy of its sinews and its joints and the dull tension of its brain.

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Since we are worthy of compassion we are worthy of understanding. Why do people say, “I do that all the

time” when we forget the date or can’t find a word?  If we were limping and had been diagnosed with

Lou Gehrig’s disease, would people say “I sprained my ankle playing tennis last week, and I know just

how you feel”? If we were diagnosed with malignant melanoma would we hear, “Yeah, I’ve got freckles

all over.” Actually, we probably would sometimes--but it would be less likely.

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It’s as if invisibility is one of the earliest symptoms, and if we mention Alzheimer’s people get “that

vacant look.” They don’t, or won’t understand us... But maybe we can understand them--after

all, our longterm memories are largely intact, and for many years we have been them.

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We are like the dead in Thornton Wilder’s Our Town. As we drift away from life, no longing fearing

to die nor craving and striving for our place in the sun, we can look back on the world that was, and

see it as a whole. We can see how people don’t understand each other, and how they rarely care

very much to do so. They don’t take the time--there are too many other things to do--they don’t know

how to take the time. And after all, understanding isn’t everything. Would you like a friend to feel

along with you every twinge, ache and throb of your toothache, or would you like your friend to take you

to a good dentist?

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For humankind understanding is fearsome--to understand another’s pain might mean the

responsibility to do something. Thus we eagerly imbibe ideas that imply ignorance is natural and

good. To understand life means to understand how complex and mysterious it is, and learn humility. To

understand human nature means to know that “enterprises of great pith and moment are sicklied

o’er by the pale cast of thought.” So we learn that when we can’t quickly understand another’s sorrow

it is best to give them a hug and turn our thoughts to more amenable subjects, like quantum physics or

the paranormal.

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We persons with Alzheimer’s think “if only I had cancer--people can understand cancer.” We think

“we can’t expect our children to understand us--it’s not their job. If only our parents were still alive or

weren’t so messed up!” I read a book about children dying of cancer--The Private Worlds of

Dying Children. They weren’t understood very well either. They were considered too young to know,

but they weren’t. They also were not too young to learn that the rule society goes by is “play the game

or be abandoned,” dying or not.

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Do we want to be understood? Do we still want to understand ourselves, if we ever did? Iris Murdoch

always liked to be a bit inscrutable--when she developed AD her husband considered and rejected

trying a drug that would partly relieve her from the friendly fog. In her case that was probably the right

decision. But most of us enjoy the effects of Aricept.

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Well, what is to be done? In this world, to plead for understanding is not the way to get

understanding--we do get anti-depressants, but they’re not the same. We can be inspired by Martin

Luther King’s message. First, we can refuse to move to the back of the bus, we can reclaim our dignity.

Diana Friel McGowin is our Rosa Parks--she refused to be a victim, wrote Living in the Labyrinth

and organized support groups. Second, we can understand and cherish each other. The outside

world may think of us in terms of broken wires and lament that we can no longer tell what day it is or

count backwards from one hundred by sevens. But we, many of us, like Christine, can appreciate

clouds, leaves, flowers as we never did before. And many of us can appreciate Michaelangelo and

Mahler as well. And we can encourage each other to create with our strengths. Dr. Bruce Miller has

researched a group of people who have grown for years in creative expression despite progressive

brain dysfunction. The neurological explanation of this paradox is disinhibition or, as the poet

Theodore Roethke put it, “In a dark time the eye begins to see.”

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So who is to say that our inability to memorize shopping lists defines the limits of our

understanding? As the mind dims perchance the spirit brightens and the visions of shamans and

prophets in ancient cultures may become ours. And we can tell the others and make them understand.

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