Trickett

I wrote an essay for The New York Times in 2013, about parenting with ALS. And every time a new comment came in online, I was nervous. I hadn’t talked to many people with ALS and hadn’t ever written something in such a public forum. I felt extremely exposed. Then a comment came through that began with the line “You and I share this journey…”

The poster was Trickett Fewell Wendler, mom to three young kids, who had lost her father to ALS and had been diagnosed herself earlier that year. Trickett’s version of the disease moved fast. She was dancing in March, wheelchair-bound in July. I felt instantly connected to her based on her comment, so I looked her up on Facebook (bless her beautiful and unusual name!) and we made a phone date. She was from Wisconsin and sounded like so many of the people I’d gone to school with there. Like so many members of my midwestern family. She was familiar.

I don’t even know what we talked about, we just talked. I had a three-year-old, but Trickett’s kids were a little older and she had to deal with their growing understanding of her illness. I do remember that she was working on an article for her local chapter of The ALS Association, and she was nervous and excited to see it in print. She was an activist for ALS awareness, and very vocal with ALS organizations about her expectations and frustrations around the work they were doing. People listened to her.

Trickett started a mom’s group on Facebook and invited me to join. Her mission was to share how we parent through the disease, with a focus on positivity. “A good dose of candid humor is a requirement :) ,” she wrote. “All days won’t be good days and we won’t know what to say to help sometimes, but l believe we can help each other through positive energy and some good old-fashioned mom power.” And so we did.

In the group, Trickett was funny and irreverent, but also focused and informed. She would post her emails to her ALSA chapter and the national chapter, calls to action that were diplomatic, but firm. And then she would post a funny selfie or the trailer for 50 Shades of Grey, just to get us smiling.

Because we were loud and opinionated, Trickett and I were both invited to join the President’s Panel of Advisors for the National Chapter of ALSA. We each had a background in marketing and a mutual impatience (felt by many others, I know) with the bureaucracy around research funding. We texted each other during the panel calls, sharing our thoughts on what was being said. Then we took turns sharing some of them with the group. Some of them we kept to ourselves, because even though they were awesome, they were probably not appropriate.

Trickett was feisty, and smart, and driven. Her familial ALS meant that she was fighting not only for her own life, but for the lives of her three children. What could motivate a mom more than that?

But still, nothing is moving fast enough. And now it’s too late for Trickett, and I’m furious. I’m furious that her kids had to lose their mom, and that the fear of this brutal and terrifying illness is staying with them instead. I’m furious that we still only have one treatment for ALS and that it barely works. I’m furious that there are bright minds in the world that aren’t out solving this problem, and trust me, I know how selfish that sounds. But I’m sick of people dying of a disease that should already be manageable.

Trickett Fewell Wendler was 39 years old when she was diagnosed. That’s way too young to be given a death sentence. There are 17 Faces of ALS on the site, and Trickett is the first one we’ve lost. She may be gone, but I will never stop telling her story, and I will never stop fighting this disease on behalf of her babies.

Love you and miss you, T, my beautiful friend.

Watch Trickett’s story here.

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16 thoughts on “Trickett

  1. Carrie Schmidt

    This is beautiful. I was only able to meet Trickett twice during two of our ALS event here at Hal’s but what a wonderful woman. I am honored to have know her and will fight to help find a cure for this horrible disease. Stay strong Sarah and keep writing. Thank you.
    Carrie S.

  2. Brooke

    Sarah, thank you for honoring your friend and for your dedication to what you’re doing here. Powerful piece. I’m furious, too.

  3. Jim weist

    Sarah,
    We are friends with Beth and I know the connection made with Trickett has been such a strong bond for Beth and her Family, thank you for your forward thinking to bring such people together, it is making a difference. Our prayers and efforts grow stronger and will not be diminished.
    Jim

  4. Nancy

    I too am furious!
    God Bless Tricket and all of those effected. My sister passed from ALS when she was 50.
    May you all find everlasting peace and love.
    God bless you all, always

  5. Jane

    I hope she had an easy journey and that her children have seen the last of ALS in their lives, for good.

    What keeps nagging me about funding here is how much in common several neurodegenerative diseases have. No one is every just funding ALS because – Huntington’s, Parkinson’s, ALS, MS – they would ALL benefit from funding/research in ALS. In other words, WTF is wrong with big pharma? ALS is NOT an orphan disease!!! It’s in a group of diseases with similarities and you find an effective treatment for ALS, you’re on your way to make incremental gains in the others. It’s a gold mine, damn it!

  6. Kirsten

    Sarah, first time I’ve commented but I love your site and posts. Thank you. I’m so sorry to hear about Trickett – but pleased that you found each other. My daughter was 6 when I was diagnosed (in Jan 2013) and together with my husband is such a champion in how she’s adapted and taken on awareness and fund raising. Thinking of you, trickett’s family and everyone who knew her today.

  7. Theresa Eckert

    So sorry to hear about your friend. This really has to stop!! I lost my husband in 2013 from ALS. It has been so hard to move on as people say. I don’t feel I am moving on. I feel trapped in the past with my 30+ years of memories. Things we wanted to do together in our later years after our daughters had grown. That is gone and I am alone. I send prayers to you and her family. I pray for a cure sooner than later.

  8. J Heilaman

    Loved reading this!! My dad passed away in 2009, 1 1/2 yrs after diagnosis and 6 days after his 50th birthday. This disease SUCKS and your passion for defeating ALS is a wonderful thing to see. I spent the 1 1/2 yrs after my dad’s diagnosis doing nothing but research 24/7. …I wanted so badly to find a way to save him!! That probably sounds naive and foolish to some, for me to actually think that I myself could accomplish saving him from this horrible disease, but his story is a little different than many ALS patients. My dad, Mark, developed symptoms of ALS shortly after his doctor increased his dosage of a statin he was prescribed from 20mg up to 80mg. My dad had copies of his medical records released at my request to view them, because I knew the timing of it all was too much of a coincidence to ignore. Upon receiving the records, we were both shocked to read, in the doctor’s side notes, that he believed the medication was a direct cause of his ALS diagnosis. So, this knowledge gave me the hope that, just maybe, I had an insight into his disease that could possibly, hopefully have a better outcome. Sadly, I was unable to accomplish the one thing I wanted more than anything; to save my dad’s life.
    My faith and knowing he no longer suffers is what gets me through the tremendous loss and the days when I wake up with the weight of feeling like I failed him. But as far as helping raise awareness, etc, it has all been too hard since he passed….until now that is…Reading your story has sparked the fire in me that has been out for some time. This is the first time I’ve been able to get through a post this in-depth about ALS and my dad since February 2009. So thank you for sharing, not only your story but your passion and determination to defeat this monster that has affected far too many families!! It is time to find a cure4als!!!!!

  9. Carol

    I’ve welcomed the support and advice of Moms throughout my tenure in that role…but, Dear God, what Trickett had to face, and what you are facing, in this all important role is beyond overwhelming to me. You are my heroes, and I promise never to stop doing everything I can until Moms like you and Trickett can seek advice on the mundane again. This had to be so hard for you and the others in your group, Sarah. I am just so sorry….for all of us.

  10. Annika

    Thank you for this and sharing Trickett with us. What an incredible woman, and an incredible friend.

  11. Anne

    Sarah, I love reading your posts, though the subject of ALS is so very difficult. I spent last evening reading Trickett’s story on her FB page. My brother passed away in August 2013, and his journey was very similar to hers. He will always inspire me to try to be strong, to laugh, and to live life one day at a time. He was such a gift to our family. Thank you for sharing Trickett’s story; I’m sorry for the loss of your friend, for all losses to this insidious disease. Most of all, thank you for sharing your story. Your honesty in telling the ups and downs of your daily life help keep me grounded to what is most important in life. Keep on searching for “the good and the funny in every day”. That’s what my brother did! Keep up the good fight and know that many of us are dedicated to fighting this disease! It’s time to strike out ALS!

  12. Adele bentitou

    This story brings me back years ago, when my sister received her diagnostic. We had never heard about this monster illness. Apparently her pregnancy triggered it. She passed away when her daughter was 9 months old. So much pain for all of us. Her mind renained bright and clear. Years passed and my niece on my brother side came down with ALS, although triggered by her pregnancy. My niece’s son also was kidnapped and killed by ALS. They were all in their twenties . This disease is frightening especially the familial trend. You don’ t know who is next? Hopefully the beast will leave us alone now. I dream of a cure or medicine to make this disease manageable. Let s hope GM604 will be available .

  13. Darlene Brugh

    I was diagnosed OCT 2014. Seems I might have gotten ALS from being in the Persian Gulf War then again in the 1st phase of OIF. This disease seems like I’m n the fast n furious movie as it is advancing quite rapidly.

  14. Debra Schumacher

    Dear Sarah,
    First let me tell you who I am :) I’m Trickett’s aunt Deb, She was a hugh part of my life. We were very close. When she was born, I was only sixteen, and I couldn’t’ wait to hold her. I promised her we would be good friends and go out and party when she was grown. And it all happened pretty much that way. My family all lived near each other, we built homes on my fathers farm land. needless to say my sisters kids, my brothers and my children, grew up more like sisters and brothers than cousins, They went around the neighborhood from house to house to see who had the best snacks :) As a young child she demonstrated leadership skills even then, (she was president of the Teddy Bear club the kids created) LOL. But as one can see by reading her bio, those skills carried her into a fabulous job. She was great at her job at GE Medical.
    When Trickett was 21 we went on a cruise together along with her mom and her grandma(our mom) and A special aunt Adeline (what a hoot) we did 2 cruises together, really special times. In 2002 Trickett married the love of her life and such a special man he is, Tim Wendler is just awesome. I thank god for him everyday. I was so honored that she asked me to be in her wedding, just so special. But that’s the kind of woman she was. From the moment they named her Trickett, she became one of a kind.
    I always knew she was special,but then don’t all aunts feel that way :) , well in this case she really had that extra something that makes people listen, she had passion and love. Kind to a fault, I’m so glad you had the opportunity to connect with her. And I’m still desperately praying for a cure for this disease. I believe they are on the right track with stem cell treatment, It will happen, I must believe.
    It was so wonderful reading this about your meeting Trickett, She’s still with us in spirit. I feel her everyday <3
    Love to you all,
    Aunt Deb

  15. Sarah Coglianese Post author

    Deb, thank you so much for sharing this. I’m so sorry for your loss and send much love back to you.

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