It is in moments…

It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body.

-Marcel Proust

Moments of illness. Rather than mere moments, I’m looking at a lifetime of symptom-management, if not illness. Yes, I feel chained to my body, of which I have ever-decreasing levels of control. I may look “just fine” to everyone else, but I can assure you that I don’t feel “just fine”. I know, or rather, knew what “just fine” felt like. This isn’t it. Some days I’m absolutely terrified of where my body is taking me. The unanswerable questions keep coming: Will I be able to see? Will I be able to walk? Will I be able to continue working? What will my quality of life be?

What does Mr. Proust mean? Is he wanting me to reflect upon my limitations, accept the chained beast of my body? Does he mean that I’m destined to live my life with some incoherent, uncaring, unfeeling creature – my own flesh? I understand that I cannot reason with my physical self. I cannot cajole, manipulate or coax it into cooperation. It has its own agenda – an agenda to be always kept from me. I have my own agenda as well. Frankly, the two do not often align.

My usual notepad for taking inventory.

My usual notepad for taking inventory.

For example: Last week I was doing inventory at work. Steel-toed boots and safety vest on, I walk around the yard and shop and write down my count for blocks of zinc, bags of flux, totes of acid and so on. Not tricky. Unless your left hand decides it no longer wants to hold onto the notepad. My left hand was visibly shaking and the muscles painfully cramping by the time I returned to the safety of the office. Only twenty minutes had passed.

I don’t want to whine though. Whining sucks (sorry for the ineloquent term – but it does).

What I do want to do is problem solve, trouble shoot, think outside the box. Anything to avoid feeling sorry for myself, induce pity from others or bring on a long session of wallowing in the hopeless quagmire of wondering where this is leading me. So. Now what?

What would others faced with challenges do? These days I think a lot about my Uncle Nick. He faced many, many challenges in his lifetime. He’d been born with malformed limbs, likely due to polio while in utero. Unable to walk, or straighten his limbs fully, he lived as he wanted to – fully. He didn’t let being confined to a wheelchair prevent him from painting a mural and he certainly didn’t let it hold him back from dancing or playing sports. He was a talented artist and worked on restoring ancient papyrus scrolls. His car was modified to enable him the freedom to drive when and where he felt like. I had always thought he was amazing, but now that I’m beginning to face a challenge or two of my own, I think he’s incredibly inspiring.

My new and improved, ultra light and portable inventory notepad. I don't even have to carry it - it will soon sport its own lanyard!

My new and improved, ultra light and portable inventory notepad. I don’t even have to carry it – it will soon sport its own lanyard!

* got it * As the problem seems to be lack of strength and control, I’ll go smaller, lighter and easier to carry. I’ve decided to clip a few sheets from a 8 1/2″ x 5 1/2″ (half the size of the standard letter-sized notepad) to a similarly sized piece of corrugated plastic. From some yarn at home, I’ll make a pretty braided lanyard and voila! My own lovely easy-to-carry clipboard using only “found” items.

That feels really good. You know – solving little problems as they arise.

While I cannot control every aspect of what my body wants or does not want to do, I can control how I respond. I can build up my muscular strength, I can modify how I perform tasks, I can rely on others for continued inspiration.

About Christine N

I'm married to Daryle, Mom to two wonderful boys - Daniel and Andy.
Quote | This entry was posted in everyday musings, ms and tagged , , , , . Bookmark the permalink.

1 Response to It is in moments…

  1. Bernice Johnson says:

    That’s my girl! Good job, Chris.

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