She contracted ALS (Amyotrophic Lateral Sclerosis) in 2012, at the age of 32, and survived longer than most. She also raised funds and awareness through her family and friends’ concerted efforts on her website, Speed4Sarah, which included a blog chronicling a courageous life contending with this debilitating neurological disease.
Sarah Coglianese, 40, of San Francisco, formerly of Oak Park, died on Nov. 12, 2018. Her Facebook site carried the following announcement:
To our beloved Speed4Sarah community:
With heavy hearts we share that Sarah passed away peacefully this morning, with her family. There is a void in our hearts that will never be filled but also an amazing little girl who will forever carry on her beautiful mother’s legacy.
We have enormous gratitude for the strength of the Speed4Sarah community. We will continue to honor Sarah’s courageous and unyielding approach to bringing awareness to, and ultimately a cure for, this devastating disease.
Memorial services will take place in San Francisco and Chicago — we will update this page with that information in the coming days, as plans are finalized.
In lieu of flowers, donations can be made to ALSTDI.
With all our love and gratitude,
Nov. 4 was her birthday and, with characteristic humor, she posted a photo with the caption: “40 years old, but I don’t look a day older than 80.” She also included the following blog entry:
Sarah is old
“It’s my 40th birthday. This morning I woke up in a hospital bed in a hotel in California’s wine country. The hospital bed was crucial to the trip, so that Rob and I could get some sleep. But of course there is something extremely messed up about spending your 40th birthday in a hotel with your husband in separate beds. Especially when your bed has rails.
“I asked Rob to bring me to Calistoga for my birthday because the wine country might be the longest love affair I have ever had. The first time I came here was November 4, 2000. My 22nd birthday. I knew nothing about wine, except that I greatly enjoyed it, and so my boyfriend at the time and I went to all the places we had heard of (meaning all of the places that sold cheap wine in Madison, Wisconsin.) We had an amazing time. This is my happy place.
“The first time Rob and I traveled here together was in 2005, and the wine education I received on that trip blew my previous experiences away. My husband turned me into a knowledgeable wino, a snob who will no longer drink Chardonnay. I think even he was surprised by how quickly I transitioned. Keep in mind, I was 26 years old and very impressionable. ‘I’ve created a monster,’ Rob told me more than once.
“It is hard to travel, although we have figured out ways to work through the greatest difficulties. Riding in the car is incredibly uncomfortable for me now that my neck is too weak to hold itself up on winding roads and even in the city with all of the stops and starts. We’ve rectified this situation by bringing the BiPAP in the car so that I can lean all the way back and breathe at the same time. How times have changed. I was always the one on road trips who was belting out the lyrics to every song we listened to, the one making inane conversation. Now I am silent behind my mask, an oddity for other drivers who glance over and then double take. I can only imagine that in my wheelchair and mask I look like a very, very sick person.
“We arrived on Friday and, for me, the trip has been perfect. The weather is amazing, the food delicious, and a random woman kissed me on the forehead, which is somehow a thing that happens to me, although it never happened before the wheelchair.
“But this sort of trip is challenging for Rob because he is the sole caregiver and bends over backward to make sure I have everything I need. I don’t weigh much, but it’s still heavy lifting. Every sip of water, every foot adjustment, every bathroom trip. I don’t know what ALS kills faster: motor neurons or romance. Sitting by the pool, I look across at all the women in their bikinis, legs stretched out in front of them and shoulders that don’t look like they belong on a starving alien. I can’t help remembering when I looked like that, and I have to push down the slightly nauseating feeling that Rob should be with someone else entirely.
“On the other hand, I have made it to 40. So that seems worth celebrating. This afternoon we will drive home, and my family will be waiting with a pasta dinner and more wine. The kids will dance, and I will feel lucky that I actually have two happy places. One, the beautiful valley that keeps my glass half full, and two, the family and home that keep my heart (and my glass) completely full.”
An Oak Park and River Forest High School graduate (class of 1996), Sarah was inducted into the high school’s Tradition of Excellence wall of fame in 2017 as a “nationally recognized health advocate.” She worked in the publishing field in New York and San Francisco until the disease sidelined her, but it certainly didn’t slow her down, as her internet moniker, Speed4Sarah, attests. She raised funds for ALSTDI (ALS Therapy Development Institute in Boston) through her hashtag, #whatwouldyougive, which encouraged participants to raise funds and awareness by temporarily “giving up” one of their physical abilities.
Wednesday Journal will print details about memorial services when they become available.