By now, many of you are wondering if I’ve taken a serious turn for the worst. Or is it worse? I’m never sure about that, and I don’t feel like looking it up. It’s true that my body continues to weaken, and it’s getting harder to breathe. My speaking voice is really quiet, which means that Otto just laughs at me when I tell him not to do things (he openly mocked me by eating my peanut butter sandwich off the counter last week while I looked on, and later he acted all innocent like he just hadn’t heard me telling him no. I hope he gets diarrhea.)
My intention was to blog twice a week when I started in 2014. Now my intention is to blog today, and we’ll just see what happens after that. Summer was good, although as usual it went by so quickly that I feel like I went to sleep in June and woke up in September. Scarlett got prescription glasses and went to her first sleep away camp for one week. The glasses are already broken. I mean, did I really even need to say that? We didn’t even send them to camp with her, because it’s not like we’re amateurs here. But we did think she should wear them to school, and clearly that is where we went wrong.
Sleep away camp was a great success, and when we picked her up she informed us that she would be going for an entire month next year, and then she pointed out a couple of the kids she met, including one whom she identified as Jerky McJerky, which definitively means she had a crush on him. Scarlett has been described by certain members of my family as “boy crazy” and I have to admit that she gets this from me. Rob usually manages to act like a normal person around cute boys.
I keep wanting to quote song lyrics. Words written by Prince, The Cranberries, and Aimee Mann float through my head all day long, but when I try to assign some meaning to them it always eludes me. But the one I keep coming back to is Time by Tom Waits. About 75% of the words in that song are “time”, but maybe that’s the whole point.
My doctor tells me to stop thinking about time. I know what he means, but I always feel the same when a new school year begins. A sense of hope, a rush of disbelief that I made it through another summer. And running parallel, the knowledge that none of this means I am protected from what’s to come. I imagine that at the end of even the oldest person’s life, part of them must think that it went so quickly. As if their very existence had once been infinite, and suddenly it all seems like it must have been a dream.
The reason my doctor is telling me not to think about time is that, despite the fact that I refuse to go to clinic, I like to FaceTime him and ask him how much longer I’m going to live. This sounds morbid, but in fact is quite enjoyable, because he doesn’t like face timing, and because he’s always pretty reassuring. In our most recent call, he was in the back of an Uber giving me a play-by-play of what was happening on San Francisco’s Embarcadero. The upshot of our conversation was that I am no longer the prototypical ALS patient. My disease is progressing, but I’m still alive. Also, someone was getting arrested outside of the Ferry Building.
If I’m not supposed to think about time, does that mean I’m still responsible for dinner?
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Sarah,
I’m so happy to see your post! I have been search for it for weeks! You are always in my prayers. I wear my t-shirt proudly. I’m my husband’s Cals. You’re a remarkable woman, I admire your strength, honesty and humor. Your courage under fire gives me hope that our family will preserve as well.
Praying for you and your family. Soo looking forward to your next blog. Bless you happy dreams.
Stronger together,
Char
If there’s something you want me to do for you now or ever please just ask. You’re one strong women and in some ways lucky to tell people how you feel about them and your life without making apologies. You’ve done good momma – making your daughter smart strong and sassy.
As a new blogger and fellow pALS, thank you for being an inspiration to me and others !
That was witty and poignant at the same time. You are a remarkable woman, Sarah. And yes, I have been worried about you.
Your strength is amazing – we pray for you & your family.
Your time is so precious and blogging must take more time these days. So thank you for continuing to share your experiences. Your words matter. Your life and lessons matter to people like me that have never even met you. Thank you.
Is there still ~time~ for me to be you when I grow up?
You charming, brilliant, lovely lady
You are the the greatest! Such a beautiful writer and quite funny, as they say here in London. You provide incredible perspective that is a heartbreaking joy to read. I cheer you and your sweet family on from afar!
xx – Jill
Sarah, Always a pleasure to read your posts…so poignant and funny. I know you and Jay communicate and you both have a way of taking this disease and finding humor in the little things. And time…we all don’t know how much time we have. You appreciate it and are making the most of every moment. What a reminder to all of us. Much love to you, Scarlett, Rob and let’s not forget Otto.
Hi Sarah
I am sure that hidden in your blogs there is an inspiring book. Anita
So good to see your post. Have been thinking of you. The lyric that keeps going through my mind on perpetual loop is the faster we go the rounder we get. Still do not know what it means but it makes for a great video image. Just to keep you up to date on us. Beth is currently hitting 5 years since diagnosis and is currently in a Paris with her sister Tricua crossing off another bucket list item. Tricia just got engaged with Beth to be maid of honor this time next year myuninformed advice is to just embrace joy wherever it appears and leave time to time.
You’re right, Sarah….as your blog posts appear less frequently, your loyal readers worry more and more about you. Though your posts are less frequent, please know that prayers for you and your family do not diminish. You are always in our thoughts and prayers.
Sarah, you continue to amaze me, both in what you go through in a day and also your beautiful writing style. I love your honesty and sense of humor.
It is “worse” and I love you and your blog . N
Good to hear from you.
We have daughters the same age and they’re only children. And this was my daughter’s first summer with a one week trial at sleep-away camp too. If that’s not enough, my daughter’s first words upon pickup were: I want to come back for all 8 weeks next summer. I reminded her that we’re not independently wealthy and that I’ll see what I can do about two weeks, with the balance at the Y in our very snobby town.
You sound good. And you probably have a lot more time than you imagine, as has always been the case since this ridiculous disease. You need an eye gaze command that makes the sound of an air horn to shock the shit out of your dog.
You’re an incredible writer… you should post more often:)
Great to hear from you Sarah—I was thinking of you on my run today (as I often do) and hoping for another post soon and Boom- your post appeared (perfect TIMING)
Good to read your blog . Been missing you . Asking God to give you mental and emotional strength and peace . Judging by your blog you seem to have it . I live in Louisville and follow you . We have had experience with ALS . I am Carrey Deweys father .
Love you!! xoxoxoxo
Hi Sarah:
Your blog is amazing, as I know you must be.
I have trained my wife (haha) to have dinner
On the table each night, so I’m sure Rob
Expects the same
There was more to the post that was not
Posted.
Rather than rewrite it all.
Stay strong.
Sarah,
What to write to such an amazing writer as you?!? I sure hope you know this, but must mention how incredibly loved you are. Your OP crew loves you more than words can express. The love and light in all their eyes whenever they speak of you is extraordinary. You are an inspiration to so many. Stay strong amazing mamma. Your in my prayers. Much love, Caroline
So glad to read your post after a while. Your pen is magical – the way you balance humor in every scene.
I think of you often, Sarah. So good to see this here. You always make me laugh.
Love it , you always crack me up bella, what a wonderful spirit. Hugs and Kisses
I so look forward to reading your posts and appreciate the time and intention you place in sharing your story. I work for an ALS organization and your blog helps me connect with the humanity of the people I serve. You are witty and your insights are incredible. Thank you so much for every bit of time and I am so grateful to be on your mailing list. Sending all my light and love to you and your family!
Hi, Sarah! You are truly the most honest person I know. You have faced your situation squarely and you are honest in telling us your fears. As someone who is about to be 78 (the same age as John Lennon would hav been, btw), I look back on what is considered to be a long life. I can barely remember all of it, you know! I can remember certain events and I can tell you what my job was in certain years, etc. But, it has gone by in a flash. Now I am wondering what disease will get me in the end. It is inevitable. In my case, I can do a lot to stay healthy, so I should do that. Thanks for your honesty. I am deeply touched by it. Best wishes! You are a miracle!
I missed your posts, and was truly glad to see this one. I want there to be more time.
I echo all that I’ve read in comments and am so glad to keep hearing your story.