The ALS Association invited me and Rob to a dinner on Friday night. They had a research summit in San Francisco last week, so we were prepared to dine with scientists, doctors, and researchers, many of the great minds hard at work on the problem that is ALS.
Rob and I don’t go out a ton. We tried to do date night for a while, but our idea of a truly relaxing night is sitting on the couch, drinking wine and watching Breaking Bad. I never wear makeup to sit on the couch and watch Breaking Bad.
Putting on makeup is an interesting challenge these days. I can still do it alone, but it’s shaky. I usually end up with mascara in several places that don’t involve my eyelashes, and I keep a pack of baby wipes in my bathroom to correct all of my mistakes. I don’t think the average person would know that upon looking at my face afterwards, and I’m content to keep doing it solo for now. It’s become almost meditative, more artful than it ever was for me. Slowly, slowly painting. Taking breaks for cramping fingers. Putting on the face of someone who wants to project strength, health, and the illusion of sleep-filled nights.
We arrived at The Mark Hopkins Hotel and made our way to the cocktail hour, unintentionally, but fashionably late. As people discussed the research summit and panels they had seen that day, it occurred to me that Rob and I had once again skipped the informative part of a conference, and simply shown up for the part where drinks are served.
We’ve met the head scientists before. Don Cleveland of UCSD, who is working on silencing the genes that cause familial ALS. Clive Svendsen of Cedars Sinai, whose focus is stem cells. Steve Finkbeiner of UCSF’s Gladstone Institute, who invented robotic microscopy, a form of imaging that can help us to better understand the mechanisms behind ALS. After dinner, we were able to also meet members of their staffs, dedicated researchers who were excited to meet ME, and put another face to the important work they’re doing. We showed off pictures of our children.
Our table included my doctor, the head of the ALS Association Golden West Chapter, the President of the National Chapter, the Chief Scientist Lucie Bruijn, and three guests from Southern California: recently diagnosed publicist Nanci Ryder, her doctor, and her friend Renee Zellweger.
Nanci Ryder is a woman who has—and who makes—connections. She sat down next to me, whipped out her cell phone, and started typing. “You were diagnosed this summer?” I asked this person who made her living by communicating and who now struggles to be understood.
She nodded. In explaining to me her life as a publicist, she looked up and said, “I never stopped talking.” And although her words were slurred, I understood those four perfectly. The frustration! Talking, walking…we’ve all been promised that those were the easy parts in life. Some people can even do them at the same time, a feat I find truly impressive these days.
Renee Zellweger is one of Nanci’s best friends. It was fun to talk to her and to watch how she handled all the attention from scientists and big pharma guys who wanted their photos taken with her “for their kids.” Personally, I’m just proud that I refrained from asking her to sing Sugarhigh, from Empire Records.
As team captains for our respective Rides and Walks to Defeat ALS last year, Rob and I, and Nanci and Renee received plaques with photos of our teams. Our photo was from the 2013 walk—we’ve been Top Fundraiser two years in a row—and it was easy to see how much has changed. Back then I was still walking, albeit with the help of a walker. My daughter was a cherubic three-year-old, my nephew a balding baby. I had on jeans. HA! As if I could button or unbutton those at this point. I now wear a uniform of maxi dresses.
But Friday night, there I was. Makeup on, maxi dress on, showing my face and my daughter’s face to people who seemed to care. We thanked everyone for their hard work to rid the world of this ridiculous disease. We talked about what comes next. And we left feeling optimistic, and maybe just a little bit sugar high.
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I’m sure you – understandably – have moments of sadness and frustration and even despair. But that doesn’t stop you from being an active participant in helping fund treatment for ALS or from living your life to its fullest. You’re an inspiration to so very many, even if you never intended or desired to be.
I still hope, I still believe, that treatment will pause progression for this “ridiculous disease” and that you’ll benefit and even recover some meaningful degree.
As for Breaking Bad…..it’s the best!
to quote a song, my lovely and amazing daughter, “you’re my soul and my heart’s inspiration”!