Last week I visited Cytokinetics, a company in South San Francisco that makes, among other things, drugs to treat ALS. They don’t have anything approved by the FDA, but they’re working hard with a new drug in the pipeline, and I was extremely excited to meet and speak with them.
When I rolled through the offices, I saw many familiar faces in the photos up on the wall. Corey, Logan, José, Shelly. Logan is a young neighbor of mine. He does not have ALS, but a different muscular disease that keeps him wheelchair-bound. The others are my ALS friends. We lost José last fall, and seeing his smiling face and remembering his deep, compelling and radio-ready voice was an emotional moment for me.
The folks at Cytokinetics asked me really interesting and thoughtful questions. What is the one thing I think people misunderstand about ALS that I want them to know? What are the tools I use to get through this with a positive attitude? How has my perspective changed since my diagnosis six years ago? How have Scarlett’s friends reacted to our situation?
Short answers:
It is not constant suffering. You could handle it. Trust me.
My friends. I realize calling your friends tools isn’t necessarily accurate, but there you have it. Jay and Stephen, you guys are such tools.
Significantly. I am reconciling with this life and I am much calmer about the future.
In a variety of ways, but my favorite story is still about the preschooler who looked me up and down in my wheelchair and asked “why you got that Band-Aid on your finger?” I was wearing a bright yellow Band-Aid.
These were some seriously legit questions from a group of people who spends every day trying to find solutions to the mysteries of ALS. I felt like embracing each one of them and just thanking them for hearing me. For wanting to hear me.
I’ve been feeling that way a lot since we launched our latest #whatwouldyougive campaign. Rob and I were hoping for a modest level of support to aid in the cost of my care. But no. Friends from every area of life, my family, and a very large group of people I’ve never met helped us crush our goal. Now I can get a head array for my wheelchair which will help me drive it and be more independent than I have been in more than six months. Now I can be sure that we can pay my excellent caregivers, who have become dear friends.
And so, yes, that feeling of wanting to wrap my arms around everyone who bought the T-shirts, donated money, wrote an encouraging and supportive comment… That feeling is intense. I wish I could call every single one of you to say thank you. I know all of your names and I read every word that you wrote. You honor me in ways that I simply can’t explain. And you give me so much hope. There are no ways to express my feelings around this, but I just keep thinking if I could. If I could.
The team at Cytokinetics, the team at ALS TDI, all of the people who have taken the time to hear our story and to react in beautiful, selfless ways: you are saving me. I may not have a drug coursing through my body rebuilding my motor neurons, but you need to know, I need you to know that you are saving me. And I thank you, every single one of you, for that.
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Sarah,
You and your amazing spirit to raise awareness has prompted me and my family to start our not-for-profit “Arrest ALS”. My husband, recently retired after 42 years as a police officer. Worked his way up to Chief. On a family trip to celebrate our 25th anniversary, I noticed him scuffing his feet, and lagging behind on our walks to various places. Typical mother that I am, I scolded him, “Pick up your feet!” He said “I can’t “. A few months later he told me he fell up the stairs at work, and blamed his new bifocals. A week later, he fell in the hallway at work, blamed the new carpet. I began my internet search soon after. I am a very strong, independent and tough woman. Ran a local pub by myself for years, and spent 25 years in new construction, nothing scares me…until the three little letters of ALS popped up on my screen. I instantly had a panic attack.
Fast forward, we are starting our 4th year . We are blessed, his is an incredibly slow progressing for. He participates in drug trials at Mass General, and continues to be very active. We spent the first four months of retirement in our new winter home in Cape Coral Florida. Now that we have arrived back at our home base in Latham, NY, our work is about to begin. We are hoping to fund raise to be able to give other first responders grants to help them cover some costs that are not covered by insurance. Be it help getting add-ons to wheelchairs, help with paying for bathroom remodeling, whatever we can help with.
I simply want you to know, that what you showed me and my family has been the catalyst for us to continue your work. You and your family are in my prayers daily. We will give all we have to Arrest ALS. Never give up, Never give in.
Fondly,
Char Tedesco
Sarah, I am always inspired and moved by your amazing and thoughtful words and indomitable spirit. You touch so many hearts, raise our spirits and help us endure the ravagers of ALS. I am so happy that your fund raising was successful, just another indication of all the lives you have touched and how caring people want to help. Keep up the fight and know that your are deeply loved and appreciated.
Jays Dad
Sarah you have been missed ! I’m so happy to read that you will be more independent soon with new “tools”. You are often in my heart and always in my prayers.
Oh my goodness, Sarah. You have hit one out of the ballpark once again. We all feel your gratitude and strength and force of determination. Truly. You are amazing and cool and I love you dearly!
My daughter Mindy led me to your website as she went to OPRF with you. Your aunt Lou watches my grandson. I am so taken by your blogs and I hope there will be a cure for this horrible disease. You are truly an inspiration and will be looking forward to getting my shirt. Thanks for all you do for others.
Jan Poleski
Dear Sarah,
Every time an email message from your blog lands in my mailbox, I hold my breath. This message contained such positive news about you, the status of your life, the research being done on ALS, and the possibility of a drug that actually could work to help people with the disease, warmed my heart. My emotional response included tears of happiness.
Because of your amazing rhetoric, it feels as if I know you! Your bravery inspires me as much much as it impresses me. Your honesty and candor about your everyday life makes me laugh as well as tearing up at times. You are a hero to me. Kudos to you
my dear. You so well deserve many.
Sarah, you are LEGIT in 100 million ways. My life is different because of you. Love you to the moon and back! Xoxo
“Why you got that bandaid on your finger???”
Kids are absolutely the best.
We need t shirts and I’m sorry we didn’t get them sooner. I avoided Facebook for a while.
❤️ snacks ❤️
So glad to hear all of this and to hear from you again. I brag about your strength and talents to people often. Keep it up! We love you!
Sarah,
Just found this blog, you’re an incredible writer with a spirit to match. Keep up the great work!
Hi Sarah!
You are such an inspiration, and I’m glad to read your writing again. I am reminded so of my sister Nell Tredway Hardy when I see your words; we lost her last July 3 after her unbelievably brave 9-year battle against ALS. I think she might have written to you once or twice over the years? Thank you for carrying forward not only her spirit, but also that of all the other pALS who hoped against hope for a cure. I pray it comes soon. And PS: How do I get a teeshirt??
Hi Sarah, I am an able bodied “bloghound”. A google search or subject matter that strikes me takes me on a journey to articles, posts and blogs where I am able to get to know so many wonderful people and get glimpse into their lives and perspectives. I added you my favorites list a long time ago.
You are amazing, funny, inspirational. genuine and gifted. I just wanted you to know that I read your blog often and it has given me strength, motivation and introspective reflection, gratitude for my blessings and renewed faith in people. I look forward to as many more blogs as you bless us with.
Kate
Is the What Would You Give campaign over for 2018? Oh no, I somehow missed it. Can I still donate?
It’s not over! Thank you so much for asking, Anne. You can buy a shirt or donate in any amount at the links below:
https://www.bonfire.com/whatwouldyougive/
https://www.mightycause.com/story/Wwyg
Caroline, I remember when you first reached out and introduced me to Nell. She was incredible. Thank you for continuing to read the blog! You can order a shirt at the link below-it is deeply appreciated. Hugs.
https://www.bonfire.com/whatwouldyougive/
When I read your blogs I am incredibly proud of you. Then I read the comments and I am reduced to tears because there are so many WONDERFUL people in the world who love you. Their comments also bring me out of the depths of despair after watching the news. It’s like being on a roller coaster. Love always. N
I got a green medium. I weigh 117 lbs. if it doesnt fit, we’ll let our 7 year old wear it!!! I was so hoping I could wear it to my upcoming Mayo Clinic appointment. I feel like it would have been my goodluck charm. You are the bravest of the brave! I sent a little diddy (my version of a 1500 word blurb) to Ellen about why I think you and Scarlett are so deserving of her generiousity. I sure hope her team reaches out. Xoxo
Thanks Sarah! Got my t-shirt just in time!
Thank you for your energy and sharing and wonderful sense of humor.