Wednesday, August 16, 2006

718 A.D.

Have you ever had one of those dreams where you are trying to run away from something and your legs feel like molasses? Like no matter how hard you try, they just won’t move as fast as they’re supposed to? Somehow your whole body feels wrong. No, worse. Your body feels offended.

As the two-year anniversary of my diagnosis approaches, I thought I would try to answer the question I get most often – How are you feeling? – a little differently. I know people are typically referring to both my physical and mental/emotional well-being, but I have a hard time explaining the physical. I usually offer up the standard “I feel weaker”, or my balance is getting “more wonky” and not much more. So allow me to elaborate.

The dream I describe above is my waking reality. When I walk, each step feels as though my feet are glued to the floor. It feels like stepping onto solid ground after having run on a treadmill. My steps feel strained and awkward, drunk and clumsy. When using my arms, it feels like struggling to lift what is normally a light object, such as a glass of water, after having lifted weights for two hours. I look at the glass with disbelief that it should feel so heavy.

Mornings are particularly difficult. I feel so stiff and sluggish that I have to consciously go through what I call “The Unfurling.” I shake, shudder and stretch to breathe life back into my muscles, which feel as though I’ve been skiing, biking, and swimming for a week straight. I feel like a bear waking up from hibernation, willing my body to reanimate.

Once I’m up and about, I feel like falling is inevitable. When I go down, it feels preordained. It feels like all the strength drains out of my legs and puddles around my bruised ego on the ground. It feels like every failure in my life suddenly weighs me down. I lie in bed sometimes at night and feel that same weakness without even moving. It’s an odd sensation, like some sort of nausea flaring in my muscles, the physical manifestation of my emotional turmoil. Perhaps it’s related to the twitching I feel throughout my body. I practically vibrate myself to sleep.

Sitting down is simple. Feels like target practice. Just aim and drop. But standing up feels like a contest. It’s my 6-foot 5-inch, 200 pound frame against gravity. It feels like trying to leg press a Volkswagen Beetle. Sometimes I simply can’t do it. No matter how much I plead with my body, gravity wins, and it feels like losing control over my fate. It reminds me a little of trying to convince my daughter not to play with the doors on our fireplace. No amount of negotiation seems to matter. Although when I do make it up, it feels like vanquishing an evil foe. Like slaying a dragon. Like I’ve won a prize, and where is my damn cookie?

My doctor asked me how I was feeling last week during my quarterly checkup. I told him, quite frankly, that compared to my life before ALS, I feel like shit. But that compared to last week, I don’t feel so bad. Depending on my energy level, I generally live between those two ends on a spectrum. Quite often, living with ALS feels like I’ll never get back to OK. OK would feel like finding my favorite childhood teddy bear hidden away in the basement. OK would feel wonderful. But some days, I’m not convinced OK even exists anymore.


Lyn Jerde said...

First, Scott, your writing is stunning in its beauty. I have rarely seen, in print or online, such eloquent, powerful and well-thought-out commentaries. As a writer, I stand in awe of few, and you are now among that few.

Second, the reason I found your blog -- because I just finished talking to your friend Joe Wurl, who's bike-riding north to south in Minnesota to create ALS awareness. He pointed me in the blog's direction.

Talk about burying the lead -- my name is Lyn Jerde, and I'm the Eden Prairie community editor for the Sun-Current, and I'm writing a story about Joe's ride.

In addition to my work at Sun Newspapers, I also write a weekly faith and values column that appears Saturdays in the Telegraph Herald of Dubuque, Iowa (, where I was the religion writer for many year.

That was why your entry about faith caught my eye. I'd like to hear you say more on this topic, if you feel moved to do so. What I hear you saying is that you believe your questioning nature somehow precludes you from having the kind of faith in God that you'd like to have.

I need to think about that a little bit before I respond. And I'd like to hear from you: What, in your mind, constitutes "faith?" Could you describe the faith that you've seen in others, and how it differs from your outlook on life -- then tell me why you envy that faith and seem to feel it's out of reach for you.


Vanessa said...


I read your entry a few nights ago and couldn't think of a positive commment or word to help. I read it again tonight...and all I can think of is to say "I'm sorry."

I know no one is to blame, but it feels like somebody needs to say I'm sorry...sorry to you...sorry to me....sorry to anyone with a difficult, difficult disease.

I have been a teacher for 22 years...not always a good one but sometimes I get it right, and when I do, it is glorious. Strong word yes, but glorious it still is, when I see minds expanding...knowing that I had something to do with it.

I like to think my own neurological problems are my ultimate assignment...Even if I end up a drooling, paralyzed, shell of myself, I hope that I may still have the strength to turn it around...In other words, I hope that I can use it to teach compassion and tolerance, to smile if possible in the face of tragedy, to teach my fellow humans that life is precious...My ability to communicate may become severely limited, but I hope that some will notice the kindness in my eyes. It will be my final that I feel is somehow my destiny.

That helps me....but I am still sorry for us all.

May Allah bless you and give you peace.....

alper said...

Several years ago my nightmares are full of Ece (my daughter) Everytime I dreamed her, she was in danger and I was not able to rescue her. That was really horrible dreams. I was wakeing up with tears in my eyes...
But now they are gone away.
Sometimes I walk even run in my dreams. Sometimes I can not walk properly...
Just want to let you know