GUEST THINKER

Adding Life to My Years

I first noticed it in April 1996, when I couldn’t flex my left foot in modern dance class. By August, it was causing persistent pain in my left calf when I ran. Over the next several months, my leg became increasingly weak. Then, in September 1997, the physician I had consulted shook his head. He concluded that I had “probable ALS”—commonly known as Lou Gehrig’s disease.

“Do people die?” I asked. He looked away and said, “Sometimes.” I started to cry, knowing that “sometimes” meant “always.” I later learned that most people die within two to five years of diagnosis. A mere ten percent survive more than ten years.

I decided I was going to do whatever was necessary to make it into that ten percent. My daughters, Laura and Erika, were just eighteen and twenty-two—far too young to say goodbye. I was also determined to connect with others who have this disease and become an advocate. I might be dying, but I was not going to go quietly. Perhaps having a sense of purpose would add years to my life. At least it would add life to my years.

In the fall of 1999, determined to preserve my deteriorating speech, I recorded my name, the names of family members, and a few standard greetings. Also two favorite family jokes: “What goes ha ha thunk?” (a man laughing his head off) and “What’s green and hangs from trees?” (giraffe snot). These recordings have survived at least three computers. I use them today in E-triloquist, a speech program that plays back recorded phrases and also converts text to speech. Who says there’s no fun in ALS?

Fast forward to May 2, 2001. After a bad night with the noninvasive breathing support I was using, I found myself on my back in the emergency room of Columbia Presbyterian Hospital. I was faced with the decision of whether to have a tracheostomy, a procedure that would allow me to breathe with a ventilator. The nurse practitioner said refusing to have a tracheostomy would be like writing “Do not resuscitate” on my medical chart. I asked, “Will I be able to go to my daughter Erika’s graduation in Boston early in June?” She said I would.

I knew that with a tracheostomy, I’d never be alone again, because of the need to remove secretions from my lungs and the danger of mucous plugs that could kill me. I took the biggest breath I could and said, “Yes.”

The surgeon told my husband I’d be back with pneumonia within six months, as often happens to ALS patients on ventilators. Wisely, my husband didn’t pass this forecast on to me for about five pneumonia-free years. Since my tracheostomy, I’ve experienced the joy of four grandchildren. Who knows, perhaps there will be more!

I worked for two-and-a-half years after my tracheostomy. But in December 2003, I realized I was too tired to continue my research job at the IBM Thomas J. Watson Research Center in Yorktown Heights, New York. That’s when I turned my energy to advocacy for ALS and other neurologic conditions.

There are different kinds of advocacy, depending on one’s skills, experience, and energy. Advocacy can be as simple as sharing one’s experience with a journal or local newspaper. The Westchester section of the New York Times publicized my political and ALS poetry in a profile that ran in August 2005, under the ominous headline “A Thing or Two to Say Before Dying.” That got the attention of my local Muscular Dystrophy Association chapter. I eagerly agreed to be on the organizing committee of its fundraising gala. Perhaps the most enduring contribution was the poem I wrote, which has been used in subsequent fundraisers and by other chapters. Over the years, my family, friends, and other people have raised about $15,500 for the ALS Therapy Development Institute.

I have my own occasional blog on abcnews.go.com/blogs/health, where I discuss issues such as dealing with insurance denials. I had always enjoyed writing. I found my niche in the world of advocacy by combining hard information and personal information in the form of storytelling. Just like I’m doing now.

I also have other skills from my nineteen years at IBM as an experimental psychologist in the field of human-computer interaction. I have been working with the brain-computer interface project at the Wadsworth Center, part of the New York State Department of Health. I serve as a home user and the user-interface expert. I do it to advance the technology for others with movement disorders and for myself.

I have my down days, and I certainly wish I did not have this disease. But by focusing on what I can still do, and not on what I’ve lost, I have a full life even with ALS.

Catherine Gody Wolf, J69, is a psychologist and an expert on human-computer interaction. Tufts honored her with a Distinguished Service Award in 2003. Reprinted with permission from Neurology Now, April/May 2014, http://bit.ly/1nue9kh. ©American Academy of Neurology/Publisher: Wolters Kluwer Health.