Rob and Scarlett are going camping tomorrow with her kindergarten class. Although there are some moms going, it’s mainly a dads’ and daughters’ trip, so even if I didn’t have ALS, I wouldn’t be there. And that makes it easy for me to imagine what I would be doing this weekend if I wasn’t in this wheelchair.
A long run. A visit to my new niece. Maybe a drink with girlfriends. Sleeping in.
Certainly not having a caregiver arrive at noon on Saturday and stay until my family gets home on Sunday. To feed me, brush my teeth, put me in bed. I’m not trying to have a pity party, but I can’t help sitting here thinking this is too weird to be real. I used to have a life, and it didn’t revolve around needing constant care.
I’m glad they’re going camping, though. It will be fun for them to spend time together, away from the constraints of my reality. Nice for Rob to get to know other parents in an environment where he’s not worried about taking care of me. This is a theme that’s surfacing more and more often in my mind. I can’t escape from my disease, but that doesn’t mean my family shouldn’t be allowed to.
My niece Jade is graduating college in May, and we’ve been invited to go to Arizona to celebrate her accomplishment. I’d love to be there. She worked so hard, already has a great job lined up, and is an astonishingly beautiful person. I first met Jade when she was 12 years old. It’s almost unbelievable, the time that has passed. But I’m staying behind, because I want Rob to enjoy his time with his niece, who is also his goddaughter, time with his family, and time with Scarlett, without having to tend to all of my needs. When I’m around, things become a lot about me. It’s unavoidable, unless I take myself out of the situation. So that’s what I’m doing, as hard as it is to miss an important occasion like this.
That weekend will be a tough one for me. The camping trip is only one night, but Arizona will be three nights. I think about what solo time like that would mean for a healthy mom (freedom?), although obviously if I were healthy, I would be going to Arizona. We were there for Jade’s graduation from high school and for my nephew Grant’s graduation from high school. My in-laws will be in from Florida, and I’m sad to miss seeing them. But this is ALS; it takes away your options, especially if you’re trying to be thoughtful about the people who care for you. People who deserve a break.
I guess I deserve a break, too, but you could argue that my whole life is now a break. I don’t cook, I don’t clean, I don’t pick up toys. I don’t get back to people in a timely manner. I watch other people work, while I sit here and read. I have people who adjust my feet.
I can’t imagine that you would find anyone who is “built for ALS,” but if such a person exists, it’s definitely not me. It makes me more than a little crazy to sit idly by, watching other people carry out the physical requirements of my daily life. In fact, I often check out entirely, because I don’t have another mechanism to rely on in the most difficult moments.
It feels bad to write blogs like this. Like I’m being such a downer, when there are clearly many things to be happy about and to look forward to. But sometimes, I just have to acknowledge what I’m missing, and how different things used to be. It makes it easier to move on.
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Hi Sarah,
I was diagnosed in 2012 aged 47 but I can still walk with a rollator & I seem to be stable thank god.
I only found you by chance on fb & watched your video & loved it. Scarlett is adorable.
I just wanted to say you are not alone I can identify with a lot of what you’re saying
I love your style of writing .
You are not being a downer it’s very important to express how you feel. It’s a very different life, but where there’s life there’s hope.
They will find a cure soon
I’ll be thinking of you & praying for you
You are a hero & an angel
Thank you for being so comforting in your writing .
X for Scarlett it’s obvious she’s adores you
God bless Liz ❤️
Sarah,
It is so, so good that you write about the reality of the disease. No, you are not feeling sorry for yourself and I so admire how hard it must be for you to stay behind, knowing how much you love a party. Please, please keep writing honestly and maybe people will keep donating to research and we can find a cure for all of us. Much love to you, Rob, and Scarlett.
Who ever said people aren’t allowed to be downers? You didn’t sign up for ALS and you didn’t sign up to be Mary Poppins. You’re honest. Charmingly honest, with a unique perspective. Which is way more valuable than you think.
This is your blog and you can write whatever you flippin’ want to write;). You need to put into words how you feel…writing really is a way to let your heart run free.
Just remember that you are getting a break from them too so why not make the most of it? Why not have a friend over, go see your new niece, or take that chair out for a spin? If you don’t feel up to those things, watch a chick flick or comedy on Netflix you love, call a loved one, listen to your favorite music, read your favorite books, and remember you always have the option to blog your heart out.
Sincerely, one of your cheerleaders in chitown
Hello, Sarah. I was told of your blog by a mutual acquaintance when I was volunteering at the Napa Valley Ride to Defeat ALS. I have a close acquaintance with ALS, which is how I got into ALS volunteering and advocacy. Your blog is a great service to the ALS community and your articulateness, sense of humor, honesty, and courage–everything you are, with or without ALS, are all components of your writing style which make it so.
Sarah, I need you…Christ, I need you. I try to live up to your Rob everyday. I think I fail everyday. My husband is more closed-mouthed than you. And I only know what he is going through, what he is thinking, when I read your words. Gripe, bitch, moan, or shout out with joy…but don’t go quiet.
And for some parallel universe reason, we also have our Otto. He’s about a month younger (and going to doggie boot camp starting Monday, thank God).
Please keep inspiring us.
Hi Sarah, this is a great piece. You are not alone – I feel the exact same way a lot. Due to a low immune system etc. I’m not able to travel or go to certain things for kids. While many judge bc I look fine. It’s so hard. God bless you.
Sarah,
I will be sharing this with my mom, who feels bad about leaving my dad alone even for a couple of hours. I am sure if he could communicate, my dad would tell her to take a break sometimes.
As one of your loyal readers, there is no need for you to apologize about being a downer or sharing the difficulties of living with ALS. Everything about how you live is courageous especially since it comes with so many limitations.
Thank you for sharing your real life with those of us touched by ALS. I wish our community some good treatment news soon especially those who are young.
Honesty and openness are extremely important. These are topics that are important and you need to talk about. Having ALS doesn’t mean you stop reaching out and getting the support you need and deserve. Strong feelings need to be expressed and respected. You always have our gratitude for showing folks that illness doesn’t mean the rest of life stops. You are incredibly strong and loving. Your daughter must be very lucky growing up in a household where she can always witness that.
Hi Sarah, I have been following your blog for several months now and I so appreciate your searing honesty and realism in your writing about dealing with ALS. You are a very talented and inspirational writer and I hope you will continue to do so.
I just read this and your latest post – I’m just overwhelmed by your writing. I guess as a 43 yr old mom of two young girls, I get all of your ‘mommy -isms’ – but they truly are ginormous accomplishments when you layer ALS over them.
You are hardly being a ‘downer’. Expressing your feelings is human.
Thanks for sharing those feelings – it truly puts perspective on the way I look at the world and my daily actions & family. For that, you have my gratitude. That’s the opposite of being a downer, no?
I really hope you ended up having a good weekend.
Hello Sarah, just started reading your posts. My heart goes out to you, I was diagnosed with Bulbar – ALS just six months ago and am going thorough many changes in my life style. So far my limbs are fairly strong but my throat and lungs are severely affected. I can no longer talk or swallow, and have great difficulty breathing. I am older than you (65), but i can relate to the anguish you must feel as a mom, I feel it with my grand children. I love being a Nana to four beautiful grandchildren, but I can no longer play with them the way they want me to because of my weak lungs and constant choking. Life goes on, and we must deal with it and stay strong for the ones we love, that’s what I keep telling myself.
Please continue with your writing, and may God bless you and your family.