Episode 70: On Remaining Engaged and Focused, Or The Lament of Living with Severe Chronic Disease

Robert Pinsky, writing about Stevie Smith's poem "Thoughts on the Person from Porlock": But maybe we are also ridiculous for smiling at Smith's expressed longing for a Person from Porlock, while we fail to appreciate her genuine, heartfelt misery: misery of feeling the immense human desire for accomplishment, engulfed by our limitations. Under its charm, her poem grieves for the fleeting human capacity, for poetry, for recalling dreams and ideas, for work, for focus itself. 

Since giving up my job due to my smorgasbord of chronic illnesses--and receiving Social Security Disability Insurance benefits to keep me going, thank goodness--I have confronted the usual suspects that anyone who is forced to walk this road has or will encounter:  lack of sex drive (discussed in earlier episodes) is a major one, of course, but even more worrisome to me (if not to my Honey) is a greater lack of drive, period.

Until I saw a Linda Rondstadt interview in which she discusses the complete lack of motivation brought on by her Parkinson's Disease--she says she doesn't do much of anything anymore other than lie around and read books--I didn't realize this ponderous lack of motivation for just about everything was due to my neurodegenerative illness. I figured it had to do with fighting against depression--but until very recently I haven't felt at all depressed. The desire to do things, to make things, to make things happen, was still very much alive, but a correlating motivation was simply missing.

I actually saw this medically described in an article about being unable to get up from sleep in order to go to work or do anything else, which I suffered from in the last five years or so of my working life. I'll try to find that article again, but the essence was that it takes three components to motivate a person to get up from bed, or, I'll extrapolate, to move from one activity to another, which I also have terrible problems accomplishing.

The three components are desire, motivation, and (if I remember correctly) ability. All those days I lay in bed, sleeping through alarms and even prescribed stimulants, I had immense desire to go to work. I loved my work. I loved my coworkers. I loved my job. Oh, it had its stresses and its aggravations, as any job has, but the rewards of doing good work for a good organization with a good mission, and seeing results, and all those other wonderful aspects of having a good job meant the world to me. The last thing I wanted to do was show up late again--it was downright embarrassing. I wanted to get up and go to work, dammit!

So, desire was not the problem. I had plenty of desire. Ostensibly, I also had the ability. I could freely move my body (or so I thought). However, studies show that the degenerating brain may not work properly to make these things happen, so I would have to say my ability was impaired. That, I suppose, is what all those doctors' reports and my own statement showed the feds when they reviewed my application for benefits--but for a person who was always a "self-starter" and somewhat of an over-achiever, this is a bitter pill to swallow. That ability malfunction also, of course, affected the motivation function, the actual spirit that animates the body when it decides to move its legs from the mattress to the floor and stand up.

So weird. The whole thing is so weird. As an over-achiever, I never dreamed I'd come to a place in which I'd be unable to do whatever I set my mind to doing. But here I am. It's as if I've literally burned myself out, though it's my brain that's burning out, filling itself with little white matter lesions that are playing havoc with my life. And it's a real despair to realize that, even for those things I'm most passionate about, I may no longer have the capacity to carry out what needs to be done.

The latest "big" thing I want to do is to preserve a swath of woods in my town in which a colony of pink lady's slippers--North American native orchids--as well as many other native woodland wonders grow. I've already received the verbal support of the director of our local university's ethnobotany program, and I just got a letter from the small city where I live offering its support, along with its concerns. Those concerns were ones I had already assumed--I would need to get a group of citizens together who care about preserving our natural flora in order to raise money that we might need as a match for any grants we might get.

Pink lady's slipper (Cipripedium acuale)
Photo from UW-Madison, Department of Botany

As a successful grant writer, I know I can write the grant proposal. Or at least, I used to be able to write the grant proposal. And I spent years doing coalition-building and bringing projects to fruition in my job, so that part should be cake as well.

But I'm afraid. I'm afraid that all this desire will go nowhere. Somewhere along the line I'll let the ball go. I'll get started and then I'll disappoint people. I won't follow through.

In short, I've become a flake.

I can't commit to anything.

If I say I'm joining friends later, nine times out of ten I don't make it--I'll be asleep, or I'll be unable to motivate myself off the couch.

If I can't be counted on to carry through on that--the most pleasurable thing I know of other than spending time with my Honey and/or my kids--how can I be counted on to carry out anything else?

And so, I have to say, reading the lines by Robert Pinsky in the epigraph did make me feel better. This is a human flaw, not just a flaw of those of us with chronic disease. However, the flaw truly does become pathological, nearly insurmountable, with this brain I have. I fight it--I do. I start things with full intentions. But I disappoint myself again and again and again. It's kind of horrible.

I know I have to bull through this somehow, but I also have to be realistic. Perhaps I could find a champion for my lady's slipper cause who has the energy and ability to see the project successfully through, even if it is "my" baby.

But I do know that only I can muster the desire, motivation, and ability to write my books--my fairy book for young girls, my memoir, poems, fiction--and that's the greatest fear of all: that I will leave this world without having put those memories, those ideas, those dreams onto paper and maybe, just perhaps, being remembered for that.

And it's hard not to get depressed in the face of this fear, and this reality, which is the struggle I'm now going through. It helps to write about it, I guess. I found the Pinsky quotation quite by accident--by watching an old episode of Inspector Morse, in fact, in which he calls his sergeant "The person from Porlock." That led to an Internet search, and my reacquaintance with Coleridge's "Kubla Khan," and with Robert Pinsky's thoughts on the Smith poem.

Those are the happy episodes that keep me going. Like maybe there is a purpose to my life after all. And, no, I don't want to read A Purposeful Life or any of that. My metaphysical beliefs have atrophied along with my brain, I guess. I just want to be able to do, and to make, and to make things that matter. That's all.

Indeed, I lament "the fleeting human capacity, for poetry, for recalling dreams and ideas, for work, for focus itself."

For now, I have the rest of an Inspector Morse episode to watch--and this one, "Twilight of the Gods," has John Guilgud in it! There still are pleasures left in life!