“Tears and fears and feeling proud
To say I love you, right out loud…”
–Clouds, Joni Mitchell
As much as this song has been the soundtrack to my life, so much more now. My father is failing, day by day. His mind is eaten full of holes by dementia. I see the desperation in my mother’s face and for once, I feel pity for her. And I am frightened by her own lapses, forgetfulness that goes beyond the simple effects of stress and depression that accompany her own slow motion loss. I wonder for myself, how will I navigate this mine field alone? There is no choice. Certainly when the time comes when both of them are completely disabled, I will be able to enlist others from the community. There is hospice here. My mother started it, over twenty years ago, because there wasn’t any. Now it will be ironic to be making use of that service.
No one ever thinks that they will be disabled, let alone old and disabled. So few people make plans for that “in case.” And yet, as one of my medical school professors put it, those of us who are still walking around with all our limbs intact are only “temporarily able bodied.” TABs, he called us, from his wheelchair.
One day, coming in the door from his day as a medical student, he tripped over the door sill and fell down. The next day he fell down again. He kept on falling until he went to see a neurologist and was diagnosed with Multiple Sclerosis. He was a second year medical student. He was 28 years old.
He did not quit med school, but kept on going, at first with crutches, then in a wheelchair. He did his residency in Rehabilitation Medicine. So when the newly paralyzed, the new amputee, the new stroke patient became frustrated and wanted to say, “But you don’t know what it’s like….!”, they had to shut their mouths and get on with their therapy, for there was Dr. Mitchell in his wheelchair, looking at them and saying nothing, for nothing needed to be said.
My father was an exercise freak, in his day; in fact, he still is. Until he was 83 years old (he just turned 88), he rose every morning at six and did a half hour of cardio exercise and half an hour of weight lifting. And then he would start his day of throwing around 100 pound sacks of clay and glaze materials, always busy doing something radically physical when not seated at his potter’s wheel turning out exquisite works of ceramic art.
Everything he used, he made himself, from small hand tools right down to the potter’s wheels themselves, up to the huge walk-in kilns. If he needed something made of metal, he welded it. If he needed something electrical, he wired it. I grew up that way, too. He taught me to take lack as a challenge to create. If I wanted to make a lamp out of a piece of driftwood, I went down to the hardware store, got the pieces that would make a lamp, figured out how to splice wires (they are color coded, it’s not hard), and made a lamp. I never knew that you “couldn’t” do anything. It was a matter of not knowing how yet.
So to see my father now, standing precariously balanced on his feet, with his arms completely tangled in a sweater that he couldn’t figure out how to put on: well, I can’t even express my feelings of grief and loss and sadness for him as well as for me, because he has lost the man that he built from scratch, and he is cruelly aware of it.
He tries hard to be philosophical. He has always been a philosopher. He acknowledges that there is no point in fighting it–and then he resolves to do battle with it, and he does, for a moment…then he falls asleep, or becomes disoriented, or gets distracted; and it seems that he has lost yet another rung in the ladder that only ever seems to go down, anymore.
But I am proud of him, nonetheless, for trying. He does get on his exercise bicycle every few days, and there he pedals for a few minutes, and sleeps for a few minutes, and goes back to pedaling. I made him a seat belt out of a luggage strap, because one time he fell asleep on his bike and fell off and hit his head again, and was tangled up in the pedals and arm rests besides, and my mother had a time getting him out (I wasn’t there). So now he is very careful to put on his seat belt, because if my mother catches him without it she will give him hell, and he will do almost anything to avoid that.
I admit that I am afraid that I too could end up like that. And even though my mother does give him a hard time, she is there for him. For me, it will be different. I have little hope of having a partner, anymore. So I would be in some kind of “home,” as they say euphemistically. I don’t relish that idea. It makes me think about premature endings. Even worse, it makes me think of being helpless and at the mercy of strangers. I try to envision Dr. Mitchell looking at my self pity with quiet amusement; then I think about the wife that he comes home to every night and the effect vaporizes.
I wish I had a better ending for this post. I love to end my pieces with something snappy, but tonight, nothing comes up. I will have to take yet another lesson from my father and when in doubt, just keep putting one foot in front of the other.