I am hiding inside a holiday week, refusing to accept that I have responsibilities and obligations. Yesterday was Columbus Day and tomorrow is Yom Kippur, and so Scarlett is off school until Thursday. This makes it hard to blog. It makes it hard to do anything really, because after yet another night of no sleep (courtesy of ALS), I am home all day with Scarlett and Otto, and they are conspiring against me.
Actually, that’s not fair. I am, after all, describing a six-year-old and a puppy. But I am in charge here, with a body that doesn’t work. So the situation doesn’t work. I tried to read to Scarlett earlier, but I got tired after a few pages, and her new Harry Potter book, a gift from our neighbors, is not short. It’s so much fun to read with her, to do my terrible British accent, to explain to her how this book is different because it is in fact the script for a play. But when I can’t manage more than one act at a time, she grows bored, and wanders off to cause trouble. The latest: writing all over the wheelchair ramp in our garage. The whole space has been graffitied, the inside of her heart spilling out onto walls and floor. Otto, Harry Potter. Something that I’m pretty sure says Kill Malfoy.
I am annoyed, and I snap at her, while secretly blaming myself (maybe if I could open a door to monitor her activity?). I know it’s not my fault. Just like it’s not technically my fault that my husband hasn’t slept in weeks, even though it is my body that is causing the problem. I try to parse this issue: I am not my ALS. But in the middle of the night, when we are tired, when he is adjusting my body for the fifth time, when my ankles feel like they are going to explode, when he says “we can’t keep doing this,” it feels like it’s about me. It feels like I should fix it, but I don’t know how.
Then there are the wonderful things. My friend Ava turned 10 this month, and instead of gifts, she asked her party guests to donate to the #whatwouldyougive campaign. Donations in Ava’s honor have been pouring in. I am so proud to know her. She is compassionate, well spoken, confident and kind. Happy birthday, dear Ava, and what a special person you are to use your day to think of others. I love you, honey.
My brother’s girlfriend Emily works at a restaurant in Chicago called Dove’s Luncheonette. They organized a fundraiser around #whatwouldyougive, donating a dollar for every chicken they sold in the month of September. They raised nearly $1000 for ALS TDI and donated it to the campaign last week. This was unexpected, and very much appreciated. I am loving how creative people have been, and how generous.
So I try to focus on the good things, even when it’s a challenge. Scarlett and I spent yesterday morning in the hospital, getting her cast cut off, because she had submerged it in water the day before when we went to the pool with my sister and her family. Rob tried valiantly to rig up a protective cover so that she could swim, which involved duct tape, medical tape, and a seemingly robust cast wrap that is probably intended only for use in the shower. Scarlett dove into the water, and the plastic filled up.
“It’s no problem,” the physician assistant told me when we arrived at her office. “It’s been four weeks and the cast is probably ready to come off anyway. We were conservative in our estimate of six weeks.” She cut the cast off, and both Scarlett and I were relieved to be done with it.
Then they took x-rays, and when the PA came back, she informed me that the cast was not only going back on, but would need to be on for an additional four weeks. “The fracture was more serious than we thought,” she said, “and it isn’t healing the way we were hoping.” Just like that, I went from great mood to bad mood. And the same thing happened again today. Scarlett and I went to a flower shop where she created a gorgeous bouquet, blues, yellows and pinks. The whole thing made me happy. And then we got home and saw her fancy penmanship all over the ramp. I plummeted again. I’d like to think I could handle the ups and downs of the day in a more graceful manner, but the ups feel so precarious, the downs so inevitable. It’s like an exercise in trying to escape my disease, but realizing over and over again that I can’t. And everything is a reminder.
Occasionally I consider texting Rob the status of my moods during the day. Things are really going great, I imagine writing. And then 15 minutes later I quit. I can’t do this anymore. And then 30 minutes later How is this my life? But I don’t text. I don’t need to take him along on this roller coaster anymore than I already have. Besides, how would I expect him to respond? I might get a return text simply saying so sorry, and my curdled mind would read that as you’re on your own.
I’m not on my own. I’m well aware of this, because if I was truly on my own, I wouldn’t be holding a computer, I wouldn’t have had lunch, and I would probably be sitting in pee. So there is our final thought for the day: things must be okay. I’m not sitting in pee.
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Dear Sarah
I read your blog regularly, since I found it. I am a nurse and the insight your blog gives me, I like to believe, improves my nursing skill and makes me appreciate and understand my residents anger, frustrations and especially their unpredictable moods. I want to put my arms around you and fix everything for you, as I am sure your family and friends want to as well.
You must know, that my kids wrote all over things when I was not paying attention, I had outbursts of anger and now that I am a granny I appreciate the graffiti as original art and love it. I like the idea of framing crayon art on my walls as is, at whatever height those little people created it at.
Thank you for all you do, say and share. You are an inspiring young woman
Dear Sarah, I stumbled across your blog one day by pure coincidence and have been following your journey every since. I usually don’t ever comment on blogs but I will make an exception here. The stories you share here have deeply touched me and inspired me to be a better person (it sounds cliche I know) – to be more generous with others, to be more patient with my kids and partner but most of all to take a step back and really appreciate everything life has to offer – daily mindfulness.
Your journey is incredible hard, and my heart goes out to you and your family. What I found so inspiring is the way you deal with it, the grace and humor you have despite or maybe because of the disease you are battling with. I wanted to let you know that your blog posts have made a huge difference in my life, and reading through other comments, I am confident to say that I am not the only one. Please keep on writing, you are a light that shines very brightly. Warm wishes, Christine
Hi
Just a thought about reading aloud. Ask your mom to tape the book in chapter segments for you to share. I know it won’t quite be your voice but my daughter Sarah and I have voices that are so alike that we are often mistaken for each other. With the tape you can still sit with your daughter and enjoy the book together. I hope this helps. Anita Karr
I love you too. I read our blog always now. I blog my life..it helps me so much…U were the one who opened my eyes to the feeling that my man must have had as he lay paralyzed with ALS…that maybe he was a burden. He was not. He was my love…a 37 year love affair. I hired out his care…people who came into the house. My job was to advocate…and of course to fret…and of course to cry. I had my sewing machine 10 feet away from his bed. He would always tell me to go sew when I hovered…Not many people understand ALS. I am raising my three grandchildren. The 11 year old was telling a friend at school how he did range of motion exercises for his Granddaddy and how he held my cell phone flashlight so our dental hygienist could see to clean my man’s teeth….and he reported that none of his friends had even heard of ALS. We talked about how he could tell them some of how it went down…xxoo We certainly do not get to choose our journeys.
Sweet Sarah,
I always read your blog. Here at work. Today, I want to thank you for your humor. You always make me smile, and today you gave me a comeback to that age old question I get every time I walk into the office.
“How ya doin?”……”Just Peachy” I say, or maybe “Hunky Dorie”, whatever that means. Now though, when my office partner says “How ya doin?”…..I’m going to respond “I’m not sitting in pee!”….enough of this “I’m fine, How are you?” nonsense.
Love you Sarah……keep at it.
Sarah,
Your mom taught one of my sisters, and I remain friends with my 3rd grade teacher who stays in touch with your mom. That is how I found your blog. I regularly read it and share….sometimes reading your touching words outloud to my husband. You share your experience so incredibly well… Thank you for sharing as you do. You are always in our thoughts.
Dear Sarah,
I do hope amidst this all, you are getting to or already contemplating to tick off some of your own personal bucket list things… My cancer surgery is coming up and I am certainly conscious everyday of incorporating bucket list things into my everyday, no matter how small….Most recently… I mastered a perfect unbroken hollandaise sauce from scratch! eggs Benedict for everyone!!!
P.s. We may try to attend the ALS meeting in Boston later this month, if my surgery and healing goes well. If you’re wondering why my particular interest in your mortally honest accounts of your ALS journey,… we lost my beloved and amazing mother-in-law to bulbar onset ALS 3 years ago… she was just as plucky and often as amusing as you come across in your recounts. Hope to perhaps meet up in Boston. Meanwhile, do at least contemplate your bucket list…
Best,
Carrie