Tuesday, July 22, 2008

The Disclosure Question

My doctor is great about putting patients in touch who she thinks may be helpful to each other. So the other day I got a call from a young, early stage woman named Lauren, and we ended up discussing whether, when, and how to tell people that you have Parkinson's.

It is not a comfortable or easy decision. Editor Michael Kinsley stayed in the closet for years, as did Michael J. Fox, and not without reason. Disability is viewed by many as deficiency, and a premium is placed upon presenting a can-do, up-and-at-‘em, high energy image. So what’s best? Try to squeak by on the right combination and timing of meds and fly under the radar? Or be out and proud?

Most HR people I have talked to will advise you that if you are interviewing for a job, it is best, if possible, to keep your condition to yourself. You are not required to disclose it and your prospective employer is expressly prohibited by the Americans with Disabilities Act (ADA) from asking about it. When there is a lot on the line—like health benefits—and you can “pass,” it is probably in your interest to save disclosure for after you’re hired. On the other hand, if your interviewer suspects that something is wrong but doesn’t know what it is, that could be the kiss of death.

If you're in a job when you are diagnosed, you have protections under the ADA. Yet many employees are reluctant to disclose, fearing that colleagues will doubt their abilities and lose sight of their individuality, seeing only the disease. And, legislation notwithstanding, bosses may exert pressure, subtle or overt, to quit.

Sooner or later, with this disease, we all reach the point where the question of passing is moot. Anyone who meets us will get that something is going on. We can no longer control that. We can, however, choose what information to share as well as how to share it. For everyone, those choices will be different.

Here is what I have chosen. I do consulting work, and I often find myself at a meeting or workshop with a group of people I’m meeting for the first time. What I don’t want is to feel self-conscious and scrutinized. Are people looking at me and thinking that something is wrong with me? Is my tremor kicking up? Do I look weird? All of these questions produce anxiety, which in turn guarantees a flare-up of the symptoms I am trying so hard to suppress. So I make a pre-emptive strike at the outset, along these lines:

Something I want you to know about me: I have Parkinson's. So if you notice my hand or my leg shaking, that’s what’s going on. It is not that I am overcaffeinated, though I always welcome a jolt of caffeine.

This little speech, even with the lame caffeine joke, makes people visibly relax. I get smiles coming back at me, and almost invariably someone tells me at break or at the end of the day about someone in their life with Parkinson's. Most important, I can relax and get on with the day.

So that’s what works for me. You?

Tuesday, July 15, 2008

Good Scents

Shared laundry facilities can be a wonderful thing. Without our laundry room, I wouldn't have met Michelle, with whom I began by commiserating about a malfunctioning dryer and ended up in an ongoing smellfest.

Let me explain. Michelle, it turns out, is a breezy but serious sensualist, deeply immersed in all things olfactory, who writes professionally for and about the fragrance industry. She also writes a delightful and wide-ranging blog called Glass Petal Smoke. I told her that I have Parkinson's and that people with Parkinson's sometimes lose their sense of smell. Knowing this, I had been thinking of how I might be able to exercise my smelling apparatus, just as I exercise my muscles, in the hope of keeping my scent-sense alive.

Instant karma. Fast forward a few days and there we are, Michelle and I, at my dining room table. Before us sits a plastic tray containing some 70-odd vials of essential oils. They are grouped and ordered according to a system designed by a French parfumier to train the "noses" of his industry to discern scents, much as vintners learn to savor and analyze wine.

Michelle lays out small strips of blotting paper around the tray, like a white picket fence. She labels two strips with the name of the oil in the upper left corner of the tray (it's lemon), and dips the tiny wands into the oil. We each sniff a blotter and describe what we smell, writing down the words that come to mind: lemony (duh), bright, sweet, citrus. We repeat the process for the first 8 oils or so, all in the citrus group, with names like mandarin, grapefruit, and bitter orange. Then we move to the next group, oils with a citrus foundation and grassy tones. These smells seem more complex. We find notes of licorice, hints of cucumber, whiffs of hay.

Somewhere in the vicinity of 18 scents, we reach smell saturation and call it a day. My head is full of fragrances. I can't wait to do more. There is something relaxing, almost meditative, about focusing on smells in this way. This kind of concentration has to be good for people with Parkinsons, I think—it's a great settler of anxious tension, which I sometimes experience in tandem with the disease's hallmark rigidity and slowness. (The combination is like wanting to jump out of your skin while you are up to your neck in river silt.) I imagine doing yoga breathing to the sounds of R. Carlos Nakai's flute in a room suffused with sachets of lavender, peppermint, or lemon verbena.

It seems unlikely that any of this will hurt, and who knows how it might help? Our smelling apparatus is concentrated in a postage-stamp sized area in our nasal passages where neurons with globular heads are densely clustered, eager to make direct contact with the molecules that comprise various smells. This is the one and only place where the brain is in contact with the atmosphere, which is why inhaling drugs is the fastest way to get them to the brain. (You do have to be discriminating about what you inhale!) The idea that there could be a therapeutic effect from certain fragrances doesn’t seem to me to be far-fetched.

So thanks to Michelle and a crummy dryer, I'm now a dedicated aromaphile. My message to anyone lucky enough to have a functional olfactory system: Wake up and smell the coffee, the lemons, and the lavender.

Reading Matter

  • David Howes, editor. Empire of the Senses: The Sensual Culture Reader. NY: Berg, 2005.