Monday, February 22, 2010

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

6 comments:

  1. Wonderful poems, Cathy. It is amazing that your spirit is so strong, you are still able to engage and communicate with the world through your poetry and messages. Prognosis (good) indeed!

    ReplyDelete
  2. Hi Cathy, My mom was diagnosed with AlS and has since passed. She started having problems years before she was diagnosed. She fell down and broke a finger and tore her rotatory cuff and had surgery but never healed from it. She started getting worse a few months after i graduated high school ('02). she had not been diagnosed with ALS at that time. I ended up having to quit my job and stay home to take care of her. She went from walking with a limp, to walking with a cane, to having someone help her walk, to a wheelchair, and finally bed. She also had to have a feeding tube, oxygen, hospice. It was horrible i was so mad at her all the time and would get mad at her and scream at her and then i moved out because i thought it was terrible that i was treating her that way. She was diagnosed with ALS october or 03 and died December 1st 2003. She was 46. You said you had 2 daughters and i don't know anything about your story except from your poems. If one of your daughters had acted that way with you would you be able to forgive her? I feel so rotten about how i treated her and still cant forgive myself because she never had the chance to tell me or i never asked her. She was a wonderful mom and was worried about me the most. The reason i'm asking is because you have it and i cant ask her so i'm asking you. Thank you so much I just needed to ask someone who could relate some how.

    Megan

    ReplyDelete
  3. Megan,
    I have a daughter who was graduating high school shortly after I was diagnosed. She was MAD. She wrote on her board "31 f+cking days till college " she ignored me and sometimes yelled at me. I knew she was really mad at ALS, not me. I am sure your mother knew that too. For someone who has just graduated high school to take care of a mother with ALS is a heavy burden. You can be proud of what you did. I am sorry you and your mother never got to talk. I know she would have said, "I know you're really mad at ALS, not me.
    Cathy

    ReplyDelete
  4. That's a great use of structure to convey the mood. I loved the "Prognosis(good)" ending!

    Although it's also sad to think that you're in a good situation, for someone with such a condition. So few people can afford home care (though I'm very glad you were able to get it!)

    ReplyDelete
  5. Very motivational & inspirational poems Catherine. I like Resolved. It's very haiku-like. In just a few simple words, you manage to convey the strength & determination of your spirit. Very touching.

    ReplyDelete
  6. Awesome poetry!

    Dr. Cathy Wolf's poetic artistry is ever evolving as she continues expanding and expounding the lines. It's like a beautiful flower stretches out to reach for the Sun and grasp it's life-giving light.

    ReplyDelete