other than becoming a physician. When I was in grade school I played
with Cathy, who lived two doors from us on a block where almost all
children were much older than we were. I made her be the patient while
I was the doctor; she thought that was unfair, but I usually won. I wanted
to be the one who helped, not was helped. I wanted to be the one who
understood what was wrong and knew how to fix it. In time, I marched
through college in three years, then medical school, and received my MD
degree several months before my 25th birthday.
Four months after I graduated, I was in an Emergency Room with a head
injury. I was a patient, not a doctor, and nothing I knew could help. The
indelible memory from the night I was held for observation has nothing
to do with medicine. I held onto the thought that my husband would come
get me in the morning. I held onto that as the nurse woke me every 20
minutes to shine a penlight into my eyes and ask if I could feel her
pinching my toe and whether I could remember my name or hers.
For months afterward I slept 13 to 16 hours a day. When I was awake,
I was crippled by a fierce, unremitting headache and nausea that swept
through me whenever I turned my head. My short-term memory was so
poor I would stand up to get something, only to realize I could not
remember what it was I wanted. Jeff would call at lunchtime to ask me to
eat the sandwich he had made and then call back to see if I had. In the
evening, he would walk me to the car and take me over country roads to
see the autumn foliage. He called it “leaf peeping” and made no comment
that, regardless of time of day, I wore sunglasses inside and out because
light made my headache much worse.
While I was in the hospital, an emergency scan showed I didn’t have a
hemorrhage under the skull, so I went home diagnosed with a severe
concussion. When I didn’t improve in a few months, the diagnosis
changed to post-concussion syndrome and the neurologist told me “head
injuries heal in their own time.” I learned to use a computer and began
to write for the first time since high school. Sometimes I wrote to express
things I needed to say, sometimes to find what I needed to say. Spring
arrived six months after the accident, the world splashed into color
outside my window, and I realized I could not restart my internship the
upcoming July. I was not the woman I had been, I might not be a doctor
again, and I wondered what I was without that dream.
We bought our first home. After the cats died as elderly gentlemen, we
decided to get the dog Jeff had always wanted. He envisioned running
together. I thought of long walks and someone curled beside me on the
couch. (Essentially I thought of a very big cat that would go outside.)
After poring through a breed-comparison book, we went to a breeder’s
home to meet her bearded collies— a Scottish herding breed described as
medium sized with flowing coat and a personality marked by impish
intelligence and devotion to people. When we walked in, one of her girls
stood up slowly, placed her paws on my shoulders, and looked at my face.
I looked back into eyes that watched me curiously and made me wonder
what she was thinking.
Within three months of getting Teddy, my first dog, I got pregnant. Shortly
after that, I was laid off from an editor’s position. Teddy was my
companion as I walked and thought and looked for a job. He read the
Help Wanted’ listings, listened to my fears, comforted with a chin on my
knee. Joseph was born five days before Teddy's first birthday. As much as
Ted missed me, he was more enchanted with Joseph when we came home.
When Teddy was two-and-a-half, he became very sick with a disease
eventually diagnosed as systemic lupus erythematosus. It is an
autoimmune disease, and as his immune system attacked his body, he
developed ulcerating skin sores, chronic diarrhea, and toes twisted by
arthritis.
enough for Joseph to learn to walk by hanging onto Ted’s hair and
walking by his side, not long enough for him to learn to hold a leash and
walk his dog.
A few months after the first attack of Teddy’s illness, people suggested a
companion puppy might help Teddy and act as insurance against the
vacuum of a suddenly dogless life, and we got Lily. Lily quickly became
the Princess of Everything. As she vibrantly ran everywhere, we discovered
she was a gifted athlete. She became Jeff's running companion, and they
ran with power and happiness. He gave up a dream, and then it found him.
The summer Lily came, Joseph was a few months past his second birthday.
He was gentle, squatting in the kitchen to watch her or lying in the
backyard beside her, exploring the new world that held her in it. I could
not watch him with the dogs without smiling. Shortly after that, we took
Joseph for an evaluation to see why, at two-and-a-half, he could sing any
melody but had a speaking vocabulary of only four or five words.
Initial evaluation led to more tests, and by spring we were told Joseph was
autistic. He entered a preschool for children with special needs. Within
the year, he was speaking well enough we understood the world was an
overwhelming and confusing place for him. He battled anxiety all the time.
He became over-stimulated in shopping malls and other public places and
would bolt off in panic, heedless that we were screaming at him to stop.
By his fourth birthday, his list of diagnoses included autism, fine and gross
motor delay, and juvenile bipolar disorder.
I first explained death to Joseph when he was six years old and Teddy died,
saying that sometimes we are so old and so ill our bodies cannot be fixed
anymore. When that happens we die and go to Heaven. I told him to look
up at the stars that evening and know that Teddy was looking down on
him, his beloved boy. Joseph told me that now Teddy had a perfect body.
I was stunned. He didn’t talk much, and I hadn’t realized he understood
the concept of perfection.
Joseph will turn 15 years old this spring. He is taller than I am. Despite
educators who said he would never learn to read or write or speak
understandably, and certainly not with aggressive drug therapy to help
calm his mind and slow his body, he loves his computer; he is far more
brave on the Internet than I am. He learned to spell because Google needs
at least an approximate spelling to take you where you want to go. Joseph
wants to go everywhere and read everything that has enough illustrations
to hold his interest. He falls frequently, then gets up and tells you “I’m
brave.” He is, although he doesn’t realize how brave he is in the face of a
complex web of disabilities he barely sees. Joseph knows what he is, not
what he is not.
Last fall we finally placed him in a residential school where he could get
help with the personal needs he cannot manage himself, yet be in a
classroom where his reading ability is something that can be exploited
and enhanced. His teachers see Joseph as a gift, bright and funny and
eager to talk to them. He cannot handle utensils well and he cannot print
his first name well, but he has figured out how to handle his iPod just fine:
He listens to Disney songs at deafening volume.
And so it goes. What do dreams become? Life, in all of its messy, joyful,
numbing turbulence, a turbulence of dreams fulfilled, dreams deferred,
dreams that need to be reconfigured, and dreams that need to be allowed
to slip through our fingers and become dreams for another time or another
dreamer. My dreams are at another crossroads. I will be all right. I will
define new dreams, accept the dreams that have found me, and try to find
Joseph’s faith to let them take me wherever I can go.