Category Archives: Relationships

In Memory of John

My brother-in-law, John Goulding, died a year ago today. He was Rob’s older brother, and they shared a room as kids, despite a ten-year age difference. This means my husband was introduced to Led Zeppelin and bongs at a very early age, and that he was once the target for pellet gun shooting when John and his friends were curious about whether or not it would hurt to get shot. It did. But Rob always laughs when he tells the story.

John had Burkitt’s lymphoma, a particularly insidious form of blood cancer. We learned about his diagnosis while we were in Napa for the 2013 Ride to Defeat ALS. We felt helpless, which by then, was not a new feeling for us, but still an unwelcome one. John lived for 8 more weeks. Rob was by his side when he passed away. So were his daughters, his wife and others who loved him.

I couldn’t be there, but I had the privilege of drafting an obituary. An obituary is such an extraordinary concept, a short collection of words expected to distill the essence of an entire life. I did the best I could, but the obit did not mention Zeppelin, pot, or pellet guns, and so it obviously came up short. Read More>

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So it goes

This week three of my close friends with ALS were in the hospital dealing with ventilators, pneumonia, feeding tubes, diaphragm pacers. Yesterday, a man I did not know personally passed away from this rotten disease, leaving behind a young daughter. My mood as I write this can best be described as low, with a side of resignation. This isn’t even close to Bad Attitude. It’s just the reaction you might have if you are hit again and again with the kind of surreality that comes with living in the world of ALS.

I extend my deepest sympathy to the family of Louis DiGiacomo, who was way too young when he died in the morning on November 19, 2014. 32 years old. All of the words that follow are about me and my experience, because that’s what I know. But my thoughts right now are with Louis and his family.

When I was first diagnosed with ALS, I could still walk. I was scared—very scared—by what I was learning about the disease, but it hadn’t truly started affecting my life and my autonomy. I drove myself to doctor appointments and walked down the long hospital hallways. On the day my nephew was born, I was able to rush to my sister’s house first thing in the morning while the rest of my household slept. Scarlett and I still went to parks and out for pancakes after her morning swim lessons. Read More>

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Something in the way she moves

Yesterday Scarlett and I joined some of her friends from school and their moms at the International Hip Hop Dance Fest in San Francisco’s Palace of Fine Arts. The performers—10 different groups—were incredible. Even the youngest ones made it look easy, circling hips and popping shoulders, windmilling arms and feet rarely flat on the floor. There were several acts that made me want to stand up and applaud. But, you know.

I get chills watching people who can dance. I’m not a very good dancer. I mean, obviously, people with severely weakened limbs are probably not tearing it up on any dance floor, but what I mean is, even before ALS took my mobility, I wasn’t a very good dancer. It didn’t really matter. I LOVED to dance.

The only times I’ve ever performed in front of an audience were my days on the high school drill team. This meant football game half times and weekend competitions, flying splits, kick lines, and Vaseline teeth (keeps you smiling.) It was fun to practice routines with the team and to compete, even if it did mean wearing the same itchy and uncomfortable nylon uniforms that other girls had been sweating in for twenty years. Read More>

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