Poetry by guest blogger Dr. Cathy Wolf

Prize4Life guest writer and PALS Catherine Gody Wolf shares two poems and the story of her diagnosis. Dr. Wolf recently appeared on CNN using a new brain-computer interfacing technology (see the piece here).

It was in my modern dance class in the summer of 1996 when I was 49 that I noticed my left foot refused to flex. Then whenever I ran, my left calf hurt. I decided to give my leg time to heal and enrolled in a masters swimming class. My legs did not work too well, but I swam with my arms. By the fall, my left calf had not healed, and, if anything, hurt more. I went to an orthopedic doctor who x-rayed my calf and pronounced the bone sound. He referred me to a local neurologist. I had always been on healthy, ate well and at 5’3” was a slim 115 pounds. I didn’t get sick. The neurologist mentioned amyotrophic lateral sclerosis as a distant possibility. I looked it up in the Merck Manual and was horrified. “This could not be happening to me,” I thought.

But it was. After trips to three high-powered ALS centers and treatment for neuropathy and Lyme disease, in the fall of 1998 I accepted my diagnosis of ALS.

My employer, the IBM Thomas J Watson Research Center, was accommodating. My family, husband Joel and daughters Erika and Laura, were supportive. After I had a tracheostomy and was on the ventilator full time, I hired an excellent lawyer to do battle with my insurance company and won round-the-clock nursing.

I feared the day I would stop working. But I found other interests to take the place of work. I started writing poetry, first political, then about my feelings about ALS. I joined my local MDA fund raiser committee. I wrote occasional articles for Neurology Now. I became involved in the Wadsworth Center brain-computer interface research, and I was the main force in revising the ALS functional rating scale to measure the abilities of people with advanced ALS. Most importantly, I was there for my older daughter’s wedding and experienced the joys of being a grandmother.

After thirteen years of ALS, I have had my ups and downs. My poetry reflects this reality. First, I’ll give you a poem, Resolved, that reflects my attitude on a good day. Then I will give you a poem for a bad day, Routine Routine. The second poetic form is a pantoum, which has a specific pattern of repeating lines, reflecting the tedium of life with ALS.



Resolved
© 2005 Catherine Wolf

I refuse to die
I choose to defy
Prognosis (poor)

I will see
Daughters
Graduate
Marry
Grandchildren

I refuse to die
I choose to defy
Prognosis (guarded)

I must
Love
Help
Work
Dream
Eat chocolate every day

I refuse to die
I choose to survive
Prognosis (good)



Routine Routine
© 2008 Catherine Wolf

Every day I wake at ten-thirty
The nurse puts betadine around my trach, washes it off with saline
The aide pours a half can of liquid food in my feeding tube
They hoist me in the lift

The nurse puts betadine around my trach, washes it off with saline
They put me in my wheelchair
They hoist me in the lift
The nurse brushes my teeth with an electric toothbrush, no toothpaste

They put me in my wheelchair
They dress me
The nurse brushes my teeth with an electric toothbrush, no toothpaste
I am wheeled to my computer

They dress me
I delete spam, read personal email
I am wheeled to my computer
Every three or four hours they pour something in my feeding tube

I delete spam, read personal email
At around nine o’clock I go to the tv
Every three or four hours they pour something in my feeding tube
I watch the tivoed PBS News Hour

At around nine o’clock I go to the tv
Maybe Keith O
I watch the tivoed PBS News Hour
I am taken to bed at midnight

Maybe Keith O
Whether I’m tired or not
I am taken to bed at midnight
There are no holidays, no vacations

Whether I’m tired or not
The aide pours a half can of liquid food in my feeding tube
There are no holidays, no vacations
Every day I wake at ten-thirty