Just Like Lili Von Shtupp’s Blues

Dear family, friends, and anonymous readers, for this Owl Journal post, I’m going to once again ask you to indulge me.

As you might recall, in my last post I asked you to listen to three audio clips and to watch one video, and now I’m hereby requesting that you watch the following 4.5-minute video before you read what I’ve written below it.

Seriously, if you’re at work or in some other inappropriate situation unsuited for a brief audio-visual intermission (yes, with the volume turned up!), PLEASE, just wait until it will be ok.

I desperately want the visuals and the soundtrack from this clip freshly in your mind before you proceed.

Trust me.

The fact that you will be treated to a masterpiece of cinematic comedy is delicious icing on the cake.

Ok, so, here we go. I’ll be back in 4 minutes and 34 seconds:

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I’d guess that when most people consider how awful it must be to live with ALS — aka Amyotrophic Lateral Sclerosis, aka Lou Gehrig’s Disease, a degenerative neuromuscular condition — they mostly think of muscles atrophying, resulting in gradually worsening impairment of fine and gross motor ability, ending in paralysis, as well as eventual inability to swallow and breathe.

However, after “living” with ALS for a while, you notice at some point that perhaps the most difficult symptom to deal with is one that isn’t nearly as apparent and not even known by many outside the ALS community:

Fatigue.

After all, the need to use certain muscles is momentary: getting out of bed, going to the bathroom, eating, bathing, dressing…these are tasks that take a matter of minutes, but in between these tasks are many hours of simply sitting around using my brain to read, listen to music, gaze out at the garden, watch video content ranging from informative/enriching to near-mindless distraction/entertainment, and alas, thankfully, to sit and chat with family and friends who visit.

So, the tasks come and go, but the fatigue is nearly ever-present. Combined with the motor impairment, it’s excruciating, but what’s almost as bad is:

• NEVER waking up from a night of sleep, or a nap of any duration, feeling rested and refreshed and energized
• fighting off sleep, and usually losing the fight, while simply trying to read or write or watch video, mindless or not
• requiring an hour of rest after exhausting myself simply having a shower…even with the aid of another person
• contemplating the energy required to visit with family and friends, whereby everything from a video chat, to a home visit, to an outing to a park or restaurant feels like contemplating training for and running a marathon

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Nope, just like Madeline Kahn’s Lili Von Shtupp in Blazing Saddles:

Let’s face it, I’m pooped!

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Now, initially I thought I’d play around with any metaphor ideas I could possibly extract from the I’m Tired video, perhaps the love and sex that has so depleted Miss Von Shtupp’s energy could symbolize the activities of daily living I struggle with and the substantial effort required to simply spend time with friends and family.

But, as it turns out, while some of the lyrics seem vague enough and could work, for example:

I’m tired
Tired of playing the game
Ain’t it a crying shame
I’m so tired
God dammit I’m exhausted!

…others, well, you can only stretch a metaphor so far:

I’ve been with 1000’s of men
Again and again
They sing the same tune
They start with Byron and Shelley
And jump on your belly
And bust your balloon
Oy!

I mean, I tried to like Byron and Shelley, as well as Mr. Keats, in my Late Romantic Poetry class at Rutgers circa 1988, but I was tremendously embarrassed by not being sure how to pronounce Ozymandias, and, eventually, to paraphrase Shelley’s sonnet, I looked on the works of these legendary poets, with their accompanying volumes of footnotes, and despaired.

So there’s that, and, while I have been with 1000’s of men, it was all purely platonic.

Still, metaphor or no metaphor, barely a day goes by when I don’t think of Lili Von Shtupp and this scene from Blazing Saddles as I attempt to push through relentless fatigue.

At least it can still make me chuckle.