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.