Trust Me, I Just Look Nervous...

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As I stand in the line up at Canada Customs, with my three tired children, I let out an audible sigh. My husband looks at me and as our eyes meet, I can see that he understands my concern. It’s past midnight and having just completed a five-hour flight that was delayed, my medications have worn off and my tremors have resurfaced. While this inevitable consequence of bad timing wouldn’t normally bother me, the same cannot be said for people who are already looking for signs to confirm their mistrust.

This false appearance of nervousness is one aspect of Parkinson’s Disease that has always caused me much angst. When I was still in clinical practice as a family physician, this was
one of the challenges I faced on a daily basis. I tried to over medicate myself in an effort to avoid the tremor, but I was not always successful.

I remember one particular evening working in our urgent care clinic and being told by a woman my own age to “stop moving so much because it’s really distracting!” Little did she know how much I wished could have obliged her! There were many times I felt that the tremor gave me an air of nervousness, which for someone who was actually quite confident in her medical knowledge, was very frustrating. I recall many times walking into an exam room on a particularly bad day, to discuss results or further testing with my patients and seeing the look of hesitation in their eyes. Even when the results were completely normal, they often thought I was not telling them the whole truth, that there was some devastating diagnosis that I was hiding and they required a great deal of reassurance that this was not the case. Luckily over the years long-standing patients in my practice eventually became accustomed to my shakiness, accepting my initial explanation that my tremor was something that "ran in the family" and then responding with empathy when I disclosed my diagnosis. (The end result was that I built up a rather large, busy and devoted practice that I sincerely miss.)

This issue wasn’t limited to work. I noticed it when I had to speak to my children’s class or when I was meeting new people or was at a social gathering. Any situation that would cause my adrenaline to flow, either due to anxiety or excitement, resulted in an increase in my symptoms. And during that decade that I had decided to keep my condition private, it was very difficult indeed. Having to contort my body in order to hold something as simple as a wine glass or even carry on a conversation while standing was exhausting.

My experience with this is obviously not unique. As I’ve become more active in the Parkinson’s community, I’ve heard countless more stories of people with PD being accused of much worse - being drunk on drugs or mentally unstable. Some of us are unaffected by this ignorance, smiling at the obvious mistaken conclusions. While others, like myself in some ways, become more self-conscious which can in certain instances lead us to withdraw physically and emotionally. And isolating yourself leads to its own slew of problems.

So I guess the question is –
does the way my Parkinson’s presents affect my self-esteem? I would be lying if I said that it doesn’t make me self-conscious at times because it does. But I think the interesting thing about this disease, like many other chronic illnesses, is that it redefines my sense of self. We all know that appearances are fleeting and not important but when you have something that may affect it, you understand this more. I now find my self-esteem from the way I am able to positively affect those around me, how I may nurture relationships, how I may help someone in need.

So when I look in the mirror at night, I don’t really cringe at the imperfections in my makeup (from my shaky hands) but instead I reflect on the day and ask myself “what happened today that brought joy to my heart and happiness to others” – that to me is where my self-esteem comes from now. Thanks PD…lesson learned!

Or more difficult yet, being looked upon with pity, thought of as being less able to be a productive member of the community. Our abilities and expertise which prior to disclosure were valued, may in some instances be questioned.

Another life lesson that Parkinson’s has been so kind to teach me – one that I continue to try and learn.
Parkinson’s deconstructs our lives, causes us to face our flaws, our egos and strips life down to the basics. It forces us to concentrate on what’s really important in life. I agree it’s cliché to say that it’s what’s on the inside that counts, but in essence as this disease progresses, we have to remind ourselves of this simple truth.