Odd but true: adapting to life with ALS requires forgetting some of the details of life before ALS. I know that my body once knew how to run, how to climb a flight of stairs, how to chop an onion and stir it into a sauce. But now those actions seem so beyond me, they are nearly unrecognizable as functions I once performed.
The closest thing I can come up with to describe this a bit more generally is the experience of giving birth. After Scarlett was born, I was smitten and amazed, but I was also honest. Childbirth had been horrible. Literally, that is the word I used to describe it for a few days, until my body somehow sloughed off most of the memory, filtered it through a baby powdered light, and returned it to me, all soft and desirable. I know there was pain, but that’s a theoretical knowledge. In reality, I thought, it wasn’t so bad. I could do it again.
The point isn’t that childbirth is terribly painful and everyone who thinks it isn’t is kidding themselves. The point is that our bodies (or maybe just our brains) adapt. They block things out, the kinds of things that might keep us from ever having kids again. The kinds of things that would prevent us from getting out of bed and facing each day.
For me, many of these are small things: what it feels like to bend over and pick up a toy off the floor, what it feels like to do a backbend in yoga class. I once did those things, but tell that to my body. It just insists that life isn’t that bad right now and I’m not missing much. Was it so great to pick up toys? Isn’t it a lucky thing that I once spent time doing yoga?
There were moments early on in my illness when I felt like I should just be able to get up and walk across a room like I always had. But now, when I’m sitting, there’s a feeling in my legs that lets me know they don’t remember how to do that. I don’t have the sense that I should be able to stand, not really. My body feels heavy, and the muscle memory is just gone. It sounds crazy, but I don’t feel any panic, just a new understanding of my abilities.
When I was training for the Portland marathon, I took a weekend trip with a couple of friends. One, an extremely active and fit woman, but not a long-distance runner, wanted to watch me start my practice run one morning. She walked outside with me and said, “Ok, so like, what do you DO?”
“I don’t know,” I laughed, “I just run.” I did a little bit of prancing to entertain her. And then I took off, coming back after about 8 miles, feeling a familiar mix of exhaustion and euphoria. She just shook her head, still not quite comprehending.
Now I watch people running and I know that what their bodies are doing is some kind of miracle. I can’t remember what you’re supposed to DO when you go for a run. I mean it. How does a foot strike the ground and propel an entire body forward, even once?
But then, I am living in a world where the ability to toss and turn in bed is a privilege. I couldn’t sleep the other night. What do you do when you can’t sleep and you have ALS in your legs and your torso? Nothing. Unless you’re planning to wake someone up to adjust you every three minutes, you just do nothing. And it doesn’t create a very relaxing atmosphere.
Luckily, that night was a major exception, as I normally have no trouble sleeping. I can’t really remember what it was like to hop out of bed, to get up and grab a glass of water, and so I don’t worry too much about not being able to do it.
I’m not sad. There are times when I am absolutely certain that I’ll walk again, that Rob and I will travel, that I’ll grow old and dance with my daughter. But in the meantime, I am once again awed by the inner workings of the human body. How mine is failing me in so many ways, but at least it has the decency to soften the blow by giving me this baby powdered view of my past.
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This is amazing and truly inspiring as someone also being diagnosed with this disease.
So well stated. I was explaining to a friend recently how odd it is to have absolutely no ability to move my legs or arm, but still have full sensation. To have moments of looking at the fingers of my left hand, willing them to move, and nothing happens. Every day is the new normal.
So beautifully put. I believe nature equipped us with some merciful features, like the ones you described, and many more that I’ve seen – and experienced – along the way. I think they’re meant to be unnoticed, but occasionally it’s good to be able to appreciate the mercies every now and then.
Sarah, you are amazing. I love you!
So very well said! I have ALS but am still able to work some. My walking is failing and mt left hand is no longer working but somehow I’m adapting. I too tell friends that I’m not depressed but often sad when I reflect upon the things I can no longer do.
One of my fellow employees said it so well…. She said ” you are in a constant state of mourning the tiny things you are loosing” WOW she hit it on the nose!
Blessings to all of you
As all have said above, you are totally amazing SC! luv u dude! xo
HOW I SPENT VALENTINES DAY 2015
When you get to be 58 and have been married 33 years, Valentine’s Day tends to lose a bit of focus I hate to say. However, this year I discovered a new way to celebrate it. I, along with friends and family and 750 of our closest friends jumped into the Atlantic Ocean at Manasquan NJ in an ALS benefit. This act started about a year and a half ago when my oldest daughter, Beth, was diagnosed with ALS. She is an incredibly strong and courageous individual who has chosen to not look back and live her life to the fullest each day. Our youngest daughter Tricia, who has done Polar Plunges before, organized a team of Beth’s friends last year to do the Joan Dancy and PALS Valentine’s Day Polar Plunge. Watching them and Beth and the true friendship and love that they shared was inspiring and caused me to want to take part this year. The Plunge benefits a foundation that uses 100% of its funds to help PALS with equipment, refurbishing their homes to accommodate their special needs etc. It’s a very worthy cause.
So in December 2014 I signed up with Beth’s sister Tricia, my wife and 11 of Beth’s friends to take the Plunge having absolutely no idea what would happen but wanting to raise money and awareness around this cause. Our team became known as Birthday Beers for Beth as the Plunge was to take place 4 days after Beth’s 27th birthday, her love for a cold beer and the fact that she wouldn’t be going in the water with the rest of us maniacs but wanted to participate in the overall liquid theme.
In 2014 the team raised about $3000, a noble achievement. I am proud to say this time we raised over $11,000 and the event raised well over $200,000. We were the 4th highest fundraising team. Now about the day. I am happy to say most people thought I was crazy – they are right. I also was offered a lot of advice on how to stay warm and what would be the coldest part of the experience. There were three choices on the latter question; (a) standing in the cold mix of snow, ice and sand waiting to plunge; (b) the water itself; or (c) coming out of the water into the east coast February weather. On Saturday the air temperature was 32 degrees, the water temperature was 38 degrees and the wind was off the ocean at 15MPH. The actual answer is none of the above.
Here is why. Before going in I got to spend a bit of time with two great friends, Theresa Thurtle and Matt Bellina. Theresa and several others put together a Valentine heart mosaic of seashells each naming a PALS that they cared about and wanted to remember, including my daughter. Matt is a Young Faces of ALS ambassador who despite this wretched disease was taking the Plunge himself along with wife, Caitlyn, as their two toddlers watched. Now how could you not feel warm in the midst of this? So I kissed Beth and lined up to plunge. Thus, the answer is clearly not (a).
It isn’t (b) either, although this came close. As you dive into the ocean your chief concern is coming up for air and not being driven to the sand by a winter wave. What you forget is that there are over 700 maniacs, many of which are running into the water behind you. Thus as you pick your head out of the water someone is knocking you down, causing your head to again disappear under the waves. In short you are too busy trying to get out of the water and breath to feel cold.
Finally, it isn’t (c) either. After getting back to the beach, clothed in a soaking wet bathing suit and T shirt, I was much more interested in feeling good about what we had all accomplished than feeling cold. The community and camaraderie was very warming and I found myself standing in the wind, just feeling good, until someone had the good judgment to order me to go change into some dry clothes.
On reflection, I think the better question would have been which of the three moments was when I felt the warmest – the answer is most definitely “all of the above” and that’s why I will always remember the best Valentine’s Day ever.