Can You See Me Now

Published in anthology: Corners: Voices on Change; Jack Walker Press, June, 2018
Bo Carter Memorial Writing Contest; 2nd place, non-fiction; May, 2018

 

In 1988 I decided to hide. I’d learned the hard reality of being dispensable from my employer; when I was diagnosed with multiple sclerosis, they wanted to cut me out of the company health insurance plan. That was before the Americans with Disability Act and from that I fully grasped the value of staying hidden.

Before I quit that job, I did some research and the literature was divided on the if, how and when to disclose. There were clearly two schools of thought and I decided since my condition was nearly invisible, with few obvious symptoms, I’d take a shot at non-disclosure.

Moving on to each new job created a dilemma until the ADA became law. Then, I was only required to disclose if I wanted accommodations. MS remissions can be complete and mine were nearly so. There were days I even fooled myself that maybe there’d been a mistake. Still, I always worried I’d be blind-sided by a sudden flare-up. Memories of those days in the hospital, confined to a wheel chair, were only too vivid.  Once in remission, my flare-ups were minor and short.

I was fortunate to have good jobs that allowed me to take a sick day when symptoms arose. I could close my office door and rest my head on my desk for ten minutes. I’d arrive early at meetings to avoid notice if my pace was too slow and always checked the seating situation ahead of time.

Working in highly competitive environments, I didn’t want anyone thinking I couldn’t do the job. I spent many years working in a medical education setting; they above anyone should have been empathetic. And they might have been if I’d been more open. But I couldn’t take the chance of being seen as inadequate. Better to hide.

Next were several supervisory and management positions best described as sedentary, desk jobs. I’m proud that I managed my working life after diagnosis, all twenty-five years of it, without disclosing. My initial goal to remain ambulatory, employable and invisible had been achieved.  Then came retirement.

I smoothly adjusted to a slower lifestyle and went on looking and feeling healthy. But then along came the deterioration so natural with the passage of time. In 2016, a serious MS attack resulted in permanent loss of balance and leg strength; the dreaded moment had arrived. It was like being outed, unmasked. After decades of maintaining my façade of near perfect health, I was suddenly visible.

I’d bought the cane long before I needed it and stored it in the back of my closet. I knew the day would come and I wanted to be ready. I prefer to call it a walking stick. That makes it seem like it’s a fashion accessory. It’s a pretty little thing, with a dark colored paisley-like floral print and a wooden handle. It’s clear that it wasn’t purchased for $7.00 at the local pharmacy.

I was forced to go back to the time when I was first diagnosed, remembering how lucky I’d felt. A chronic illness is better than a life threatening one, I’d told myself. The whole diagnosis/recovery experience had put my life in perspective.

You can’t fight a chronic illness. At least, not successfully. It needs nurturing.  Care. This may sound silly, but I had to think of my disease almost as a friend. And taking care of it has been the strangest relationship I’ve ever been involved in. Then I realized I had another friend.

These days I love my cane. Well, not actually love, but I do appreciate that pretty little thing with the dark colored paisley-like floral print. What would I do without this indispensable tool? And there are some unexpected benefits.

Showing up with a cane does clear the way to your seat in a theater or restaurant. Strangers scurry to open doors, offer an arm or hover around to be sure I’m navigating okay. While attending a Broadway play in New York, I’d dropped my cane under the seats in this crowded theater. A stranger a few seats away jumped up and got down on his knees to get it for me. There are so many nice people the world.

And I’m happy to say thank you. Though most of the time, its thank you for asking but I’m okay. That’s another challenging thing about MS. I have to do as much as I can, be as active as possible; but I walk that fine line between being active and not over-doing.

When I was forced to be visible, my cane became a symbol of my disability, a signal of my decline. It broadcast my limitations to the world; it’s taken quite some time to become comfortable with no longer being hidden. It’s only in looking back that I realized the emotional energy it took to maintain that false self.

My biggest relief was to leave behind the heavy burden of secrets. Today, I’m clear and straightforward about what I’m able to do. For example, a recent lunch with girlfriends included a garden walk. I’d checked ahead to be sure there were sitting areas along the route. I have a new appreciation for railings, automatic doors and ramps.

I get lots of comments on my cane. When someone says how nice it is, I usually respond that if you have to have one, it ought to be nice. Then we knowingly smile. My cane gives me a sense of safety and I do more with it than I ever did without it.

I look back on my work life, satisfied that I made the right decision not disclosing my condition. But what a relief to no longer have to search out places to sit or make lame excuses for why I can’t perform certain tasks. These days, my trusty cane and I are as busy as I want to be. I’ve joined the human race and have become better and stronger, having accepted my limitations. What you see is what you get. That’s my new mantra. And it feels so good.

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