She Will Be Heard

by Anis Salvesen

It is true that there are many inspiring stories out there, but some of them are just jaw-dropping.  You’ll never guess who is the heroine of one of these stories.  She does not live in the Third World.  She has not suffered then overcome incredible acts of violence.  She is simply living her day-to-day life, a doting grandmother and author.    Who is she?  Her name is Catherine Wolf, and you will be floored by her amazing story.

Let’s start at the beginning, shall we?  Imagine it’s 1996, and you start having a little trouble with your left foot and calf.  You go from doctor to doctor until they realize that yes, you do have what they fear.  You only have 2 to 5 years to live, during which time you will gradually lose the ability to move.  Eventually, you will be unable to even breathe on your own.  Your life can be prolonged by connecting you to a ventilator, but then you run the risk of  becoming “locked” in your own body, fully conscious but unable to even blink.  You have Amyotrophic lateral sclerosis (ALS)

It’s probably safe to say that most of us would crumble.  I know I would be curled up in a corner bawling my eyes out.  I would be unbearably sad, angry and most of all scared.   Worst of all, I would feel totally and completely helpless – beyond all hope.

Yet Catherine found a way to fight, to cling to as much “normalcy” as possible given the circumstances.   She was passionate about her work as a research psychologist at IBM and refused to let the disease take her down.  When she lost the use of her hands, IBM got her an aide so she could continue working.  She still attended company meetings, using a switch under her foot to communicate.   When she was still able to move her neck, she was able to type by wearing a reflective dot on her forehead and then pointing her head to choose a letter on the screen.

Eventually, Catherine was obviously unable to continue in her professional career.  But she was by no means idle.  She wrote published poetry.  She became active in the online community PatientsLikeMe.   She co-authored a scientific article that was published in the European Journal of Psychology. Did I mention that she was able to do all of this despite being unable to move her neck, typing by raising an eyebrow to painstakingly select one letter on the screen at a time?

The things we take for granted, things like being able to eat and breathe on our own, Catherine is no longer able to do.  She has to sleep alone, half-bent at a 45 degree angle to prevent her from choking, as she is unable to swallow.   When she feels the saliva pooling in her throat, one of her health aides has to suction it out on her signal.

Inability to swallow of course means that Catherine is no longer able to eat.  She is fed through a feeding tube.  In fact, she wrote a poem called Last Supper, which celebrates the joy of food, the taste, the texture, the aroma.  It is a recollection of the last meal she had, about eight years ago.   Now her nutrients are tasteless and scentless, funneled into her body through a tube.

Yet Catherine still finds occasion to curl the part of her lip she can control into a smile.  She has a remarkable ability to focus on the good things in her life, on her family in general and in particular her toddler grandson.   Her story inspires me to another level of gratitude for the good things in my life.  Not only do I have food, but I have the ability to eat it, to taste it.   I even have blessings I don’t tend to think about, like being able to swallow, to breathe unassisted.   It is amazing to think how many things we all take for granted, and I am thankful to be able to share this story with you.

***The source for this blog post was an article that appeared in the Brown Alumni Magazine (March/April ’09)  titled I Will Be Heard! and written by Beth Schwartzapfel.

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