It is almost 2016, a year I couldn’t have imagined when I was a child. The idea of it, sure. I probably expected to be married with children, to have a job. But I had no concept of what that really meant.
Now I have a husband—not someone I sketched loosely in my head, but an actual person with his own thoughts and odors and television habits. I have a little girl who cracks up at knock knock jokes, and who says words that I swear I didn’t teach her. My sister is expecting her second baby—a real-life baby, not just a doll that we named and held and then left under the bed.
My life, it seems, has taken on a life of its own.
As a kid, I didn’t anticipate settling in California, a place that was once only familiar to me via The Babysitters Club books, with all their talk of granola and tofu and sprouts and Knott’s Berry Farm. A place that remained well beyond my reach until I crossed the state line in a U-Haul more than 15 years ago.
And I could no more have pictured a life with ALS then I could an alien abduction or the actual experience of childbirth. It wasn’t that I lacked creativity, but who at a young age could have colored in the life that would eventually be theirs? More to the point, what would we do if we had known?
I was reading a book the other day when I came across the following line:
The day I need to be spoon fed by someone is the day I’d rather be dead.
It hit me a little harder than it probably would have if it wasn’t describing my own needs. I know that’s one of the things that is the hardest for healthy people to imagine when it comes to living with ALS. To give up your independence feels like it might mean giving up everything. How could someone live like that?
I can remember—easily access, in fact—that not-so-ancient feeling that I’d rather be dead than be as dependent as I am currently. But I see things differently these days. It does suck, the needing to be fed. Needing so much help in general is my own biggest challenge, for now. That ALS wants to kill me is a fact that somehow weighs less than the knowledge that it wants to debilitate me along the way. Still, I find it preferable to accept the help, to stay alive.
I suspect we all create limits in our heads of what we would truly be able to handle, of what we would rather die than live through. I would also guess that the majority of the time, we’d be wrong.
Just as it’s been proven that people have trouble predicting what would really make them happy, I think people also underestimate their ability to adapt to difficult situations. There is always more to life than just the difficulty, after all.
It’s almost 2016. I am 37 years old, which means I didn’t die in a Mad Dog Blue Raspberry related incident as a teenager, or when I jumped off a train in Thailand and landed in a field. I didn’t die two—or even three—years after my ALS diagnosis.
I’m still here to welcome a new year, one in which my daughter will turn six years old. She could never conjure up everything the future holds for her, all the good, all the weird, all the scary. And I’m glad for that. She’ll find out what she can handle, as it comes. Like we all do.
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Well said. There are some great quotes in this post.
It is amazing what a person can handle! You are so strong and smart with humor and grace. Thank you for sharing your feelings I wish there was something I could do for you, please know I’m saying a prayer for you and yours. Peace ❤️️
Your ability to deal with whatever cards life deals to you is inspiring. Never change. Your will to live and experience life is what drives all of us to never rest until a Cure. Seeing the same feeling in Beth and in you is all the inspiration anyone like me should need. We are all in with you. Luv and Happy New Year.
Happy New Year, Sarah. I can remember feeling like 2000 felt SO FAR AWAY as a kid. And your posts always make me feel grateful—for you, for life, for what we have, even when it’s not what we expected. Thank you for that.
Was diagnosed in May 2015……Am doing well ( can walk w/ a brace, weak left hand)…. But does one EVER stop constantly thinking about how bad things will get?
Sarah, so beautiful and so touching. Thank you for sharing these insights with us. They are such moving views of life in general, not just life with ALS. You, and my good friend Kirsten, are constant reminders to be thankful for every moment. So thank you, you’ve added a lot to my life, and my family’s. Would love to see this reproduced into a book one day!
http://www.legacy.com/obituaries/heraldtribune/obituary.aspx?n=elliot-bernstein&pid=176737811
my father adapted to so many changes with grace and humor. he always said once he stopped with anything, he never got it back — writing, driving, texting, swimming, walking — the list goes on and on, and most are unbearable to think about. but he reminded me often it was better than the alternative.
Sarah,
You do indeed have a writing gift coupled with a really neat way of telling a story. I have been blessed to know you.
Lou
Happiest of new year! I love you. N
Thank you for sharing your words. My sister has ALS. Her turn-on used to be step aerobics. She was diagnosed in spring 2013. She is having a hard time accepting help, which makes it hard for her husband. She is handling ALS beautifully most of the time, but giving up more and more is difficult. I’m going to share your words with her.
My brother in law just died Dec. 18th, 2015 of complications of ALS. He fought this for nine years. His thoughts were the same as yours. A struggle to give up independence but he always found his independence through the computer. Made a many of people mad from doing things and not letting them know what he did. Many prayers for you and your family. Just one pice of advice, always keep your family informed….
Sarah each time I read your posts I am inspired you and Jason have a gift of capturing the reality of ALS with your words and somehow still manage to maintain your sense of humor keep writing and encouraging all of us to treasure each day we have with our loved ones much love to you Rob and Scarlett
Happy New Year Sarah,
Beautiful piece. Thank you for sharing your thoughts and insight. The last part reminded me of a quote I look at every day:
“We do not have to become heroes overnight. Just a step at a time, meeting each thing that comes up, seeing it as not as dreadful as it appears, discovering that we have the strength to stare it down.”-Eleanor Roosevelt
Someone once said to me in front of my twin daughters who were old enough to understand, “If I had twins I’d KILL myself.” I was dumbstruck, but OH how many things I have thought of since that I could have said. None as well said as your piece above.
Jessica, I cannot believe someone said that to you. Wow.
Happy new year to you guys, and thank you for sharing that great quote! Xo
Love to you and all the Smiths!
Thanks, B!
Thanks, Bob! Love back to you and the girls.
Thank you, Kathy!
Thanks!
Thank you, Jen!
Thanks, Lou!
Thank you!
I’m so sorry for your loss. Thanks for sharing your thoughts here.
Happy Yu Yee Sarah! (remember Scout saying that?) We want to come see you guys in coming months. It’s been WAY too long! Luv ya!