If this blog were a work of fiction, I would have introduced a car crash or a home invasion by now, to keep things dynamic for the readers. Or maybe I would just tell some stories about the arguments that Rob and I have around our ALS lives together. There’s nothing fictional about our fights. But there’s probably nothing truly interesting, either. Every married couple argues, just maybe not about the same stuff. I’m pretty sure that’s a direct quote from Tolstoy.
It’s not.
Let me put it this way. If love and marriage go together like a horse and carriage, which we know they do because of the wildly successful relationship modeled on the TV show Married with Children, then ALS and marriage go together like a horse and something a horse really doesn’t like, such as a staircase or a flesh-eating horse disease.
It’s not anyone’s fault, it’s just that no relationship could be expected to thrive under these circumstances. Perhaps in the earlier stages, ALS might bring couples and families closer together as they try to make the best of their situation, before the afflicted loved one really requires constant attention and assistance. I would argue that it did that for us. But after that point, all bets are off. It’s not fun for the patient or the caregiver to play these roles. In our case, when I met Rob, I was living on my own in San Francisco, and I was a runner. So if he fell in love with me in part because of my independence and my active lifestyle, then the universe really has played an excellent joke on him.
I’m not speaking for Rob here, though, as he has never voiced any of the thoughts I’ve shared above. (He opts less for introspection, more for profanity.) But I know his life used to be easier, and any frustrations he does have around my disease would be completely reasonable. I don’t think I would trade places with him. So I’ll leave the details of our personal challenges out of the conversation. Also, we haven’t had any car crashes or home invasions, which is good.
I simply want to acknowledge that ALS takes a very serious toll on families. And that even everyone who seems like they’re doing a great job of it is probably dealing with their fair share of stress, exhaustion, and general gracelessness.
That last sentence sounds funny, because I’m pretty sure that before ALS and even before parenthood, Rob and I probably dealt with our fair share of stress and exhaustion and general gracelessness. So perhaps this just takes it to another level, or maybe all struggles weigh the same, and this is just what ours look like now.
I was frustrated this morning, because Scarlett was taking so long to get ready for school. My frustration wasn’t only with her, but with my own lack of ability. Imagine how much easier it would be to get her out the door if I could be physically helpful. Sometimes I think that what we expect of her is ridiculous. That’s not to say she can’t do it, but why should she have to? Today, I couldn’t even watch. I wheeled into my bedroom and tried to calm down. I can’t do her hair, or button her jumper, or clean up her crumbs, or tie her shoes, or pack her library books into a bag.
When my assistant arrived, I was grateful. She did Scarlett’s hair, tied the shoes. Scarlett did the rest. Rob had made breakfast and doled out some meds she’s currently taking. She was out the door on time, and everything was fine.
I guess it’s true that it takes a village. But I’m sure the villagers are not always at peace with each other. That is also not a quote from Tolstoy.
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Not saying I feel sorry for you but just I’m sorry. I know the feelings you are having. I’m thankful for your stories and wisdom. Take care.
Sarah, you quote Tolstoy beautifully. And I just know, as does everyone else, that Rob fell in love with you for COUNTLESS REASONS, too many to be enumerated here. But a few for sure are your beauty, strength, intellect, wit, hilarious sense of humor and incredible warmth and kindness. I could go on…
Love you,
Beth
Sarah I love your describtions of how things really are with grace … I will never be able to thank my husband Jason enough for being a caregiver to others and now me again . He also does so with grace and with utmost patience . Words ….it is too difficult to describe his tireless efforts .. he never complains . No words .
It’s hard to have a spouse as a caregiver. I guess I thought it would be easier, because we chose each other, right? And we made those vows. But I’m pretty sure in our early 20s my husband and I thought of sickness as a bad cold, maybe the flu. We weren’t thinking multiple sclerosis. Or ALS. Or any other life-changing chronic illness.
Keep finding things to laugh about. America’s funniest videos, funny videos on Instagram. Laughter helps so much.
Hi Sarah, Always, always love your posts. I don’t think anyone who doesn’t have ALS truly understands the emotional impact of this disease nor do I expect them to. We are pretty much full time in Texas with Jay and his family and watch our daughter in law smile, go off to work, take care of the girls and ask ourselves every day, “How does she do this?” And we are renting a house near them and go back to our rental each night and dive into bed. Bless you for bringing forth the reality of this disease and infusing your humor. Lots of love to all of you. Keep posting…it keeps us all going.
You moments of truth are amazing and funny. Love you, N
Wow-alyce(elsener) from oprf shared your video on fb, and I had to come over here and read your blog… I don’t have ALS, I have RA and in my worst flares I’ve also felt the guilt of not being able to brush my daughters hair or teeth(and I’m a dentist!). I’ve changed everything about my life to make things easier for me-but it takes a lot of courage to come out and vocalize it. Thanks for giving ALS a voice, and I loved the video, you are just beautiful and such a great mom! I can be your cheerleader any day!
-Cindy Yingst
Cindy! Thank you so much. Sending you a hug, so nice to see your name here.
Hi Sarah,
Good post. I know that caring is stressful on the caregivers but I am sure that it is really hard to have to need help. You seem to have a lot of grace about that but it must be really hard for someone who appears to have been fiercely independent before ALS.
My dad, who has ALS and FTD always took pride in his physical strength. Part of me hopes that the dementia he has is minimizing his awareness of his loss of strength and independence.
I wish so much that you and the others profiled on your blog didn’t have to go through this. My heart really hurts for you. If I can do anything to help raise awareness by talking about our family’s experience, please let me know.