Sarah Coglianese, ALS Fighter & Author of the Website "Speed4Sarah"

Editor’s Note:

May is ALS awareness month, and today we’re going to honor one of its fighters. Before I had the honor of talking to Sarah, I found myself obsessively and compulsively reading her blog, Speed4Sarah, where I held my breath through her poignant, funny and REAL posts. She’s an incredible writer and you can’t help but get sucked in.  Then, I started clicking through her page, “Faces of ALS,” where I read every single story—feeling like I was doing the person an injustice if I didn’t absorb their every word, inevitably circling back to the beginning of each story to read it with even an ounce more intent.

During our interview, Sarah told me that she’d answer anything, that she’d be an open book about this horrid disease and the many ways it has affected her life.  Most of those candid answers can be found below, in the Q&A section.  My hope is that through this profile, you intimately get to know Sarah and this disease, so that you’ll be ready and willing to do any and everything to kick the shit out of it.

This is the last post for DRIVEN before our summer (aka- mental health) break, and I intentionally chose to pause this series with Sarah.  The reason being, Sarah embodies everything DRIVEN stands for—passion, perseverance, tenaciousness and a fierce desire to live her very best life.  In the words of Sarah, “I’M NOT DONE!”, and our promise to you, Sarah, is that we won’t be done, either.

Photo Courtesy Rebecca Alexis

Photo Courtesy Rebecca Alexis

Sarah Coglianese is 37 years old and has been living with ALS since 2012.  Her story, however, is a much richer one than that.  Sarah is a writer, a runner, a wanderlust traveler, a sister, a daughter, a wife, a mother.  If you really think about it, her life with ALS is such tiny piece of the big pie, and while ALS is central to her life now, this hasn’t always been the case.

“I have always wanted to be a writer, since I was a kid, actually.  It’s always been something I’ve loved to do. I graduated with a degree in journalism and got my first job in book publishing in the San Francisco Bay Area making next to nothing--and I loved it!”

She started in the company's travel book division, and climbed from promotion to promotion for nearly 11 years, starting as marketing assistant and ending up as the director of client services.

She traveled the world, leaving the country once a year to explore new places; Brazil, Costa Rica, Thailand, all over Europe.

“It was something I thought that I’d do forever.  It was such a big part of who I was.”
Sarah and her husband Rob at a Friend's wedding in NYC / photo courtesy Sarah Coglianese

Sarah and her husband Rob at a Friend's wedding in NYC / photo courtesy Sarah Coglianese

Her other passion was running, a sport she excelled at, and in 2003 Sarah completed her first marathon.

She and her now-husband led very full lives. She left San Francisco to live with him in New York, where they pursued their rapidly growing careers and explored the city by foot.

“The beauty of living in New York City was that we could walk everywhere, miles a day…and I was often in heels {laughs}”

Sarah speaks of this time in her life with such fondness that you can’t help but wish you were there with her, meeting her for happy hour after tripping down the cobblestone streets of Soho.

Sarah and Scarlett snuggle on a family vacation shortly after her symptoms began / Photo Courtesy Frank Kay

Sarah and Scarlett snuggle on a family vacation shortly after her symptoms began / Photo Courtesy Frank Kay

In 2010, Sarah and her husband welcomed their daughter, Scarlett.  The family of three had settled in San Francisco for this new chapter of their lives.  It was also when, Sarah will describe, her ALS story began.

“In retrospect, when I look back at my Grandfather’s funeral in May of 2011, I can say ‘that is the day I first noticed it.’  I couldn’t put one foot in front of the other, and it wasn’t like my heels were hurting me, I literally just couldn’t move my feet. But I also had a one-year-old and hadn’t worn heels in ages, so I kind of blew it off.”

One month later, Sarah started falling—walking down the street, pushing a stroller and virtually every time she tried to run.

“It was like suddenly my feet became too weak and I would just topple over.  I know now that the cause was weakness is my feet, and not an actual loss of balance, but it just kept happening.”

Over and over again, the doctors assured Sarah that she was fine. Her blood work had come back normal and she was young and healthy.  At one point, Sarah begged one of the nurse practitioners to please, please refer her to a podiatrist, who immediately confirmed that there was indeed something wrong, referring her to a neurologist.

“We had been trying for our second baby when the neurologist told me that he thought I might have ALS. He told me we should stop trying. It was horrible and confusing.”
Scarlett was only two years old when Sarah received her ALS diagnosis. / Photo courtesy Frank Kay

Scarlett was only two years old when Sarah received her ALS diagnosis. / Photo courtesy Frank Kay

Sarah describes telling her husband about the neurology appointment, bursting into tears, and then heading home with him only to research the disease online and find out that it was much, much worse than they could have ever imagined.

From her blog:

“ALS is a neurological disease. It means that your brain isn’t talking to your muscles, and, as a result, those muscles twitch in frustration, then atrophy, and eventually become paralyzed. The disease starts differently for different people. Some begin with limb onset: weak legs, feet, arms, fingers. Some have bulbar onset: difficulty speaking or swallowing. ALS is uniformly fatal, usually from respiratory failure, with an average life expectancy of 2-5 years from diagnosis.”

Sarah remembers the horror of her official diagnosis, her daughter was two and she was just told that the rest of her life would be severely and dramatically cut short.

“The sounds I made after the doctors left the room with my official diagnosis, I wasn’t even sure where they came from. It was unbelievable.”

The two doctors that initially diagnosed her could barely look her in the eye, they were virtually silent in confirming this worst case scenario.

“They sent me to another doctor, a woman who was much more encouraging. She told me that I had a family who depended on me, and I had to keep going.  She said I had to have hope—that there’s stem cell therapy coming.  It helped me because I believed it, but that was in 2012. It could still come, but I’m no longer a candidate for those clinical trials."
Sarah was in a wheelchair full-time when the family decided to add a new member, Otto. / photo credit Frank Kay

Sarah was in a wheelchair full-time when the family decided to add a new member, Otto. / photo credit Frank Kay

As Sarah’s disease progressed, so did the loss of many of her functions.  She remembers walking across a major street holding her daughter’s hand, unsure whether they’d make it.

“I didn’t know how much I could – or could not – do.  I just remember holding onto her, a toddler!, for support.”

The degeneration of her leg muscles progressed almost yearly, needing assistance from ankle braces, to a walker, and eventually to a wheelchair. Most recently, Sarah’s arms have become weaker and she’s found herself unable to lift them on her own.

“It's affected me in a lot of places, but it hasn’t affected my speech or my swallowing, and I feel really lucky about that.”
Scarlett holds the #whatwouldyougive sign in the photo that launched the campaign / photo credit Rob Goulding

Scarlett holds the #whatwouldyougive sign in the photo that launched the campaign / photo credit Rob Goulding

Sarah’s blog, Speed4Sarah, began in 2014 after she wrote a piece that was published in The New York Times. The purpose of her blog is to give a real-life account of living with ALS, draw awareness, and raise money.  The site is currently partnering with the ALS Therapy Development Institution, which Sarah says is more aligned with her sense of urgency in developing drugs for ALS.

Last year, Sarah launched a campaign called #WhatWouldYouGive. The brilliant idea behind the campaign is this:  participants would give up a function for a day—their ability to walk, their voice, the use of their arms, etc. to experience a fraction of what it was truly like living with ALS.

“It was unbelievable—people were taking to social media describing their experiences, saying how when they couldn’t talk, they didn’t feel like themselves, even having a basic conversation with a barista felt impossible.  I had a friend, who had chosen to use a wheelchair for a day, describe wanting a cup of tea on the second floor of her office, and realizing she couldn’t just run down and grab it.  Another friend admitted that the challenge felt inconvenient, fully acknowledging that she felt ridiculous saying that.”
the family posed for a holiday card photo in December 2015 /photo credit Amanda MarmeR

the family posed for a holiday card photo in December 2015 /photo credit Amanda MarmeR

Sarah has made monumental strides in the fight against ALS, documenting her experience fighting ALS through editorial pieces found on CNN, Redbook and Brain, Child Magazine, and through her financial contribution through the #WhatWouldYouGive campaign.  Last year, #WhatWouldYouGive raised $170k, this year, the campaign will once again launch in June and Sarah hopes to raise even more.

Most recently, Sarah starred in a beautiful tribute to her family in video for A Life Story Foundation. Before we get to her Q&A, I encourage you to watch the video, and put a face and a voice to the incredible woman behind this profile.

{DRIVEN Q&A}

What would you tell someone who has just been diagnosed with ALS?

"There is so much to say about living with ALS, but I think a newly diagnosed person just needs to hear words of hope. These are exciting times in the world of ALS research. There are a lot of brilliant minds working on this problem, and the disease is receiving more attention than ever before. Don't give up, get involved, talk to other people who are dealing with this. It's a strong community, and although I'm certainly sorry that you have to be a part of it, there are many positive things to focus on."

How has ALS changed your marriage and the dynamics of your family?

"The change had been gradual, but now, four years past my diagnosis, everything feels different.  In the beginning I could still drive, so I took my daughter to and from school and to all of her activities. (I still do that, by the way, but now someone else does the driving.) When I got a walker, I was able to get around the house and cook dinner, etc. But now, I’m in a wheelchair all the time, and I rely on my husband and caregivers for virtually everything. So the dynamic has completely shifted. I still feel like the primary caregiver for my daughter because I’m the one who spends the most time with her, but we’re never alone. We don’t sing loudly in the car anymore, or go out for pancakes, just the two of us. We’ve found other things that are “ours”, like listening to audiobooks together."
"With my husband, it’s not the kind of relationship we used to have. We are both independent people, who used to enjoy spending time together and time apart. I’m still vocal in my opinions, but I can’t actually do anything, so a lot of responsibility falls to him and he’s also working full-time. He’s absolutely stepped up, but it’s hard and frustrating. He travels a lot for work, and I used to actually enjoy that, because it was nice to miss him and be happy when he came home. But now when he has to travel, it’s just stressful. We need someone to help 24/7. When we argue, I can’t just walk away and take a timeout. I can be mad at him, but I still have to ask him to help me in the bathroom."

What are you most proud of in your fight against ALS and raising awareness for the disease?

"I always feel proud and excited when something I write gets published, because even before ALS, that was what I wanted to do with my life. Specifically around ALS, I'm very proud of the #whatwouldyougive campaign. Prior to that, we were raising money for bike rides and walks, and there was just something that felt funny about it to me. These active fundraisers that I couldn't take part in had nothing to do with ALS itself. The #whatwouldyougive campaign seems to have given people a better idea of the disease and what it means to live with it, even for just a few hours. And we raised a bunch of money, though I have my sights set higher this year!"

What is your greatest fear?

"Leaving my daughter. And more specifically, leaving her without having provided her with critical advice that she might need as she grows older. I don't know what issues she'll face, so I don't know how to help her through them in advance. I do write her emails when I think of important stuff that she should know, like please in the name of all that is holy, do not take a tweezers to your own eyebrows or let one of your goofball friends do it. That is a job for a professional, at least the first time. And more serious stuff, too."

How has raising a child while having ALS changed your perspective on motherhood and parenting?

"I've always wanted to be a really involved and hands-on mom, but I’ve had to give a lot of that up. And that means my daughter has had to do more things for herself, which has been really beneficial for her. Under normal circumstances, I’m sure I would have babied her more, or assumed she couldn’t handle certain responsibilities. With ALS, I didn’t have that luxury, and she is, in some ways, better off for it. So I’m a real advocate of giving kids more freedom and teaching them at an early age to do things for themselves. Not things involving the stove!"

For a friend or family member grappling with a difficult diagnosis of a loved one, what tips would you give on how to talk to them about their diagnosis?

"I would really follow their lead. If it’s someone who needs to talk to process the situation, then just be there and listen. For someone who internalizes things, just let them know that you're there in case they do want to talk. Most people want to help with answers and fixes, but sometimes those things don’t exist. Sometimes it’s better to just rub someone’s shoulders or hold their hand. And let them know that you support them in their decisions."

What is your greatest hope for Scarlett and your family?

"That there is a cure for ALS. Of course I would settle happily for treatments that stop my disease today, but if we’re really talking about great hope, then I want to live for a long time. I dream of going to Italy with my daughter and my husband, walking the streets and eating too much gelato. And when I fall down, I want it to be not because my muscles are weak, but because I am laughing so hard."

What’s your greatest hope for yourself?

"That no matter what happens, I can navigate my life with grace and teach my daughter to be resilient in the face of adversity. And I just really want to get old and gray and wrinkly – –with great legs."

If you were able to talk to the 20-year-old Sarah, what would you tell her?

"Probably something about being a better listener and not talking so much, and I might mention a few of the people she could skip dating. But for the most part I look back at where I’ve been, and I’m happy. I don’t feel like I ever took my mobility for granted. It’s true that I never thought I would lose it, but I ran a marathon, I traveled the world, I married the man I love, I had a baby. 20-year-old Sarah did okay even without any advice from me."

Are there any ways in which ALS has changed you for the better?

"I think it's definitely helped me to appreciate the little things in life more. Though I still often feel sad and angry about my situation, I also feel very happy much of the time, especially when I'm with my daughter. I’m grateful for the time we have together, even when she’s acting like a wild animal. I’m also constantly impressed by how she has risen to the challenges that we face as a family, and in many ways how normal her life is. On a more personal level, ALS has given me the opportunity to write and be read. That helps keep me going as much as anything."

What is the best advice you’ve ever received?

"When I was pregnant with Scarlett, I had a midwife, a German woman who later became a Buddhist nun. After I got my diagnosis, she was one of the first people I went to see. I sat on her couch and cried into my tea. And she told me that I had to let those feelings of sadness wash over me, much the way she once told me to let contractions wash over me. Don’t tighten against it. Don’t fight it off. Just accept the pain, accept the sadness, let it wash over you and then go away. It will come back. But I can’t control it any more than I can control the fog that is currently rushing across the Pacific Ocean and enveloping my house. I think about that advice all the time, and it really does help me."
 

To learn more about the #WhatWouldYouGive campaign, click here.

To read and follow Sarah’s blog, Speed4Sarah, click here.

You can also follow Speed4Sarah on Facebook!

This will be our final post for the summer as we "Pause" to take some time to reflect, breathe, and gather even more remarkable profiles.  We'll be back up in the fall, so please keep the nominations coming!  In the meantime, don't forget to subscribe to the site for periodic updates, and follow us on Facebook and Instagram.