There comes a certain point in ALS progression where you start needing the kind of help that you probably haven’t needed since you were a small child. People preparing food for you is one thing, and it can actually be quite luxurious at first. When I lost my ability to cook, I hated it, but I also felt so appreciative when a hot meal appeared in front of me, the result of someone else’s efforts.
However. People bathing you, lifting you on and off a toilet, carrying you into bed, those are the things I believe Lou Gehrig was talking about when he called this disease “infantile paralysis.”
I took my last unassisted shower in September. Just last week, I completely lost my ability to transfer and use the bathroom alone. Privacy has deserted me…and I have helped it along by sharing that last bit of information on the Internet.
Rob and I received a piece of advice from our midwife after Scarlett was born. She told us to respect the baby. This meant to talk to her and tell her when we were moving her, when we were dressing her, when we were pouring water over her head in the bathtub. At the time, I thought it definitely made sense, but I wasn’t sure it mattered much to our chunky little monster, who was generally being cooed at and kissed so much that she probably thought we were trying to eat her. But now, as someone who needs a similar level of assistance, I can see that respect is crucial.
This is not a direct comparison; I would have to be utterly insane to think an adult with ALS and a baby are even in the same realm. But I bring it up because I have been thinking a lot about those days when I was first learning to be entirely responsible for another human being. I did talk to her, did tell her what to expect from a morning, a day. I was a narrator in our lives; even small movements did not go unnoticed.
Now she is so independent, making decisions for herself, and attending to her own personal needs in many ways. The logistics I think about, the plans I make, they mainly involve the fact that I am the one who needs the constant care. Everything must be organized and announced to the person who has to take the physical action that gets me through a day. There is no jumping in the shower quickly, no throwing a snack together, no running to the bathroom. Jumping, throwing, running…the words paint pictures in my mind, and I feel like I could do all three things at once in this very moment.
But other people’s legs and hands do the work for mine. Rob cuts up my food. I have two assistants who drive my car and sweep my floor, who move my body because parts of it won’t move on their own. My sister slept over last week when Rob had to travel, and she helped me into bed that night and pulled me back out in the morning. It’s incredibly reassuring, having these people around, but also disconcerting to realize that this is how I live now. It can be hard to see yourself as strong and capable when someone is putting your shoes on for you.
This may be hard to believe, given what I’ve just described, but for someone with ALS, I’m doing really well. It’s been close to four years since my grandpa’s wake, the day I put on heels and my feet wouldn’t participate in the act of walking. My mind that day was on Papa, and on my one-year-old baby who kept licking the rug at the funeral home. So I took off my heels and didn’t give them much thought. But that, as far as I can tell, was the beginning. And it was a long time ago, in ALS years.
I’ve discovered that I have a pretty healthy self-image, even if my feet look like purple balloons, and my tummy muscles aren’t quite what they once were. In so many ways, I do see myself as strong and capable. I’m still the narrator, I’m still making decisions for myself and my family. And even when I have to eat sushi with my fingers because the chopsticks are laughing at me, at least it’s still my own hands doing that work.
I didn’t expect to need this kind of help, not now, and maybe not ever. But if you need help, I guess it just means you’re alive. And if you have people to help you, well, then you’re just lucky.
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I love your perspective.
Hi Sarah,
“It can be hard to see yourself as strong and capable when someone is putting your shoes on for you”
This is something I am struggling with as well. I absolutely hate that my husband, sister and friends have to do just about every little thing for me now. That loss of independence is devastating and really hard to process. Rob and I have always been equal partners in this marriage, and now I feel like there is so little for me to give. So what I give is the attempt to hold on to my sense of humor and be forever grateful that I have these fantastic people around me, willing to help out. It still totally sucks, though.
Thanks for expressing in words, exactly how I feel.
Kay
Hi Sarah,
You explain ALS so eloquently. Thank you.
One time after I took my Dad to swim therapy, I was putting on his socks and shoes and he said, “Don’t you get tired of doing this?” I said, “No Dad, I love helping you.” I would give anything to still go to swim therapy with him again.
Andrea, that is really nice to hear. I think we all worry that people are getting tired of helping us. Thank you so much.
You are such an inspiration, Sarah Cog! xxxooo
Very beautiful Sarah. Pat sometimes would say “sorry for being a burden.” Please please please know and understand that those of us who care for people who are living with ALS are NOT a burden ever. The disease is the burden. Not you, not Pat. Pat was stronger and more determined than ever as he lived with his ALS. I tried my best to lift Pat up above his ALS, in everyway. If that meant helping himblow his nose 30 times a day. So be it. I guess what I’m really trying to say is for us caregivers, for me anyway, it’s a small thing we can do, caring for you, to try and keep you lifted in many ways. It helps us. xo
I am so stuck on my next post. I know it’s called “Losing and Finding,” and there is a huge section on this kind of loss of control and independence. But four years – that’s great, Sarah. I continue to aver that ALS can’t take the mind where the independence and control that matter the most reside. You always get to decide how you react, and through your reactions, you are setting a hell of an example for the rest of us, with ALS, and without.
VC
To your “respect the baby” comment. You know, I was only 16 when I started working as an orderly at Illinois Central Hospital. An odd time in my life to be learning these lessons, but I learned pretty quickly (and, unfortunately, more so from nurses and co-workers who didn’t do it rather than those who did) that the caregiver absolutely needs to be VERY vocal about what he or she is doing…or better, what he or she is going to do next. (Does your doctor rub the stethoscope in a palm to warm it up before putting it to your skin…and/or warn you in advance?)
Many people kind of naturally do this talking with babies I’ve noticed…probably because the baby is not going to talk back and so it is pretty much a one-person show! (Unless, of course, the baby doesn’t like what your doing…they know exactly what kind of response will get your attention.) But, it is a very calming way to give care…to babes and anybody. Most caregivers these days, as I’m sure you experienced, do it almost naturally…not true in the Theodosaurus days.
At the same time, I learned that I actually wished the person I was caring for would be more vocal than they often were. With adults, we caregivers expect a reaction, either way, and are grateful to get them. So many people we are caring for are embarrassed to ask…or to say anything…or to let you know that the comfort you are trying to give is actually making them more uncomfortable. Maybe it’s because they think they will hurt the caregivers feelings. Phooey!
On the other hand, what I saw more often were people (generally old people) who never said a word while you were trying to help comfort them, except when they complain to someone else about what you had done “to them” after you’d left. Will I ever be that crotchety?
While I continued orderlying (yes, I’ve just made that a valid word for scrabbling purposes) through my senior year in college at different places, I was caught off guard years later when I was enlisted to perform those same kinds of duties with my wife’s grandfather (her father’s father). My mother-in-law wasn’t sure how to get him bathed…seemed hesitant or at least a bit embarrassed…and to be honest, to this day I am wondering what they did to clean him when I wasn’t there.
In any event, I assured her I knew what I was doing…”had done this kind of work for years”. Got my swim suit on, got a chair, put it in the shower, got some help getting him transferred, and we had a great time. His communication was limited to grunts due to a stroke, so I spoke to him softly and calmly in my broken Portuguese and English. Guess what…happy grunts! We did great. I think Ida’s mother got a bit worried because we spent so much time in that shower together…
But despite lack of communication, except for some calming one-way explanations in several languages (and I knew he didn’t speak English), it was quite easy to see that he enjoyed…no, “needed”…this warmth and cleanliness for his comfort. Once we emerged and I got him dressed and seated, he gave me the brightest look I ever saw on him…and he smiled…and slightly raised hi hand. That’s all that was needed.
So, I lost my point (like I see you do from time to time in these blogs)…my point being, don’t ever hesitate to do your best to let your caregivers know exactly what you want or need…it helps them as much or more than it helps you. As caregivers we want to help…your comfort is what drives us.
Love Ya, UT
You do not know me, but I think I met you when you were little . It was at Mark Thompson’s apartment and the adults were watching a football game. I taught at Emerson /Brooks and have known your parents since about 1974, I taught at Lincoln also when your Dad was at Irving. I can’t express in words my deep feelings that I have concerning your condition, your bravery, and your remarkable outlook. I wish you God’s peace on your journey.
Thank you, Bruce!
Love ya back, UT, and thank you for this perspective!
Beautiful sentiment, Jenny, thank you so much.
Thanks, Vivian! I look forward to reading that post. xo
Eliz, we just got your holiday card and I’ll tell you who the inspiration is: you, Joe, and your amazing kids. What a crew. Love to you all!
Thank you, Kay!
Sarah
I have known your Mom and Dad for over 30 years. Know that you are precious in HIS sight and that you and your family are in our daily prayers.
Rob and Deb Robinson
You really have a gift as a writer, Sarah. Did you know that before you had this disease? You make me laugh and cry with every post (not many people are capable of that!) Even though we live in LA now we are thinking of you all and sending you lots of love (and puppy kisses!)
Thanks, Jenna! xo
Sarah: Thank you so much for taking us on your journey, You are an incredible and strong
woman. Your blog is very informative and puts a very personal face on ALS. There is no
doubt that God blessed you with writing skills , which are blessing so many. I am enjoying your
writing style and will continue to follow your blog. I am consciously going to SLOW down and
enjoy all the small miracles happening around me every day and APPRECIATE! Thank you for
reminding me of this.
Hugs,
Pattie
Pattie, thank you!