I’m often in a little bit of a bad mood before lunch. I remind myself that it’s just because I’m hungry, and that I’ll feel better as soon as I eat. Still, it’s not a good time for me to talk to other people, and that includes the people who are here in the house with me. Before lunch, I am often very quiet and secretly simmering. This never used to be a problem for me before ALS, when I had a predictable appetite and could attend to all of my own concerns. But now that I move so little, I’m rarely hungry…until suddenly I’m famished.
I try to take in a lot of calories during the day, but my stomach is the size of a child’s fist, and it tightens around half a bowl of soup. They say to eat often when you have ALS, to keep your energy and your weight up. I do my best. I miss snacks – – a concept that really only applies if you can eat without assistance. If someone else is feeding you, it’s not a snack, it’s just someone else feeding you between regular meals. And so, in yet another way, ALS renders me not quite myself. I don’t know who I am anymore, I’ve said more than once. So much of my identity was wrapped up in my physical abilities, whether it was long-distance running or near-professional tortilla chip consumption.
Why did I never appreciate the simple act of grabbing a handful of pretzels or a piece of fruit? The security of it. The way it shields you, to be able to serve yourself, and not involve anyone else in your diminishing blood sugar drama.
This afternoon, my assistant mentioned a photograph she had seen in Scarlett’s room. “It was you walking with Rob on your wedding day,” she said. “You looked beautiful.” I started to cry, surprising us both. I had a practically perfect wedding day, but I feel like a different person than that girl in the white dress carving a high-heeled path through Central Park. She had such a strong grip on life, and everything to look forward to.
It was you walking… Well, that’s all there is left, isn’t it? Me walking is nothing but a memory, a moment once recorded for posterity, something that was, but is no longer real.
I ate, and I’m fine now. Just sitting here thinking about how we are forced to ride our emotions like waves. I wasn’t really in the mood to feel sorry for myself, I was just sort of hungry. Of course, I wish to walk again, but I would drive myself crazy if I spent all day focusing on what used to be. That is me, walking through the grass with my new husband, just as much as it is me in an old photo from my preschool days, and I said goodbye to that little peanut butter person a long time ago. How far removed am I from the person I was just yesterday? Meaning, I suppose, if ALS chooses to unmake me (and it clearly has), how do I rebuild myself within this unreliable shell that used to carry me? How do I do a better job of dealing with change, so that I can make this easier for myself and everyone around me?
If it is simply a matter of staying well-nourished, I can do that, whatever it takes. If it involves letting go of the past, and whatever hold I thought I had on the future, that could be more difficult. I can tell myself that everything is okay, but the truth might still come leaking out of my eyes when I’m not expecting it.
Please consider donating to ALS research. #whatwouldyougive
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Damn ALS sucks big time!
Sarah you are amazing! (My hubby was diagnosed two years ago at 47, we have 4 kids). I can relate to so many of your posts. I know you are thinking no way Vicky you can’t your on the other side but our side sucks too. whether you are the one with ALS or the spouse ALS changes your life forever!! I really admire you for sharing your story good and bad. I hope that your posts lets non ALS people realize how much this disease really suck!! I think of you and your family often. Thank you for spreading ALS awareness❤️
Sarah – you are a beautiful writer. And, you don’t know me, of course. I’m just another person making a comment on your blog page – a stranger. A friend PMd your page, a friend whose brother is dealing with ALS. My friend and I had a long talk two nights ago about what he is going through and how it is affecting him, his wife, their 11-year-old son and my friend. It was a sad and sobering conversation. But I am writing because I think there’s hope. And I am hoping that if you look into the information I have that, he will be inspired to look into it, too. I’m sure you’ve tried many therapies. But I’m also sure your doctor hasn’t given you much hope to heal. I don’t know how long you’ve been sick or what you are dealing with beyond what I’ve read here, but I think there is hope for you, and for everyone who is dealing with ALS. I’m really going out on a limb here, so stay with me. The information I have comes from an unconventional source, and to be honest, I myself am still trying to reckon with that. But the information is so spot on for so many, and so many are healing from myriad ailments, that I can’t ignore it and just stay in my comfort zone. I am starting to speak to people like I am speaking to you. Putting myself out on a limb, being bold because I am so sure this information will help so many. You see, ALS is one of the “mystery diseases” conventional medicine doesn’t know how to deal with. But it is actually the result of your body’s having dealt with heavy metals you have encountered and inherited, and with viruses you have contracted through various means. And your body can rid itself of those metals and viruses with this protocol, and you can heal. So I’m hoping you will look into these protocols so my friend’s brother will be inspired to do so. And both of you will heal. Thank you for reading. And I wish you the best. Please read Medical Medium by Anthony William. You’ll see what I mean by an unconventional source, and I hope you’ll keep reading, consult with one of his practitioner’s or even him, and begin to heal. And, Sarah, if you do read the book and take the steps it suggests, let me know so I can tell my friend’s brother that there’s hope that he will live, eat a meal with a fork again and play ball with his son. I wish you all the things you hope for and that you walk in the grass in high heals with your husband again. With hope, Jean
You’re writing, and the way you express your emotions is so raw and gets right to the core. Makes us take notice of what we take for granted. My prayers for a cure and for you to have easy, satiated days. Today I will appreciate the small things. Thank you Sarah
Jen
I really want to comment on the incredible nerve of the person above to post cruel snakeoil miracle cure nonsense here. Just a tiny flame? No? Ok.
Sarah- You are a beautiful writer. While there is so much more to this awful disease, you manage to pick out such tiny mundane things to highlight how deep the changes ALS makes to your life. It humanizes an inhumane process and hopefully allows people some more insight into just how MUCH it can change someone’s existence. While throwing all sorts of terrible symptoms out there might horrify people, it doesn’t allow for those not directly in contact with ALS to connect with it. Thank you for writing your stories and making the incomprehensibly awful something people can relate to.
Fiona
And I’d like to thank Jean Sharry for going out on a limb and sharing with clearly good intentions… I know how uncomfortable that is. I don’t know anything about the book she mentions but I know that the people in my life with ALS who are doing incredibly well have treated heavy metals, viruses, bacterial infections, leaky gut, biotoxins, etc. with a daily dedication and fight that few of us can imagine… All while being told they are crazy. There’s something shameful going on, but it’s not the Jean Sharry’s of the world.
Every word you write…I think every day!
Sarah, I think I speak for many, many of us when I say that through your brave, shimmering writing you have changed the lens though which we see the world and our own lives. Also know, that you your family are in my prayers everyday.
Though her intentions were probably good, agree, especially since she has not read Sarah’s blog from the very beginning on. I have chronic illnesses and the nonsense people spew sometimes, though with good intentions, gets old. Fiona, if you’re the same Fiona on the blog (I DO read it, have since its inception), I hope you’re doing ok.