“Now I feel and I say all the time that vanity is, like, long gone. I'm really free of worrying about what I look like, because it's out of my shaky hands. I don't control it. So why would I waste one second of my life worrying about it?”
Wise words from Michael J. Fox and ones that intellectually I truly subscribe to. Yet here I am at this clinical research study visit, wasting away the seconds…in front of a video camera, over 12 hours since my last dose of medication and what I’m the most self-conscious about is how I look – hands shaking, feet in their dystonic posture. I’m surprised by this feeling. I’m disappointed in myself.
As a mother of three young and impressionable girls who are assaulted on a daily basis by a media that seems to be determined to break their self-esteem and self-worth – a constant barrage of images of perfection that are basically unattainable by any normal child with a non-Hollywood existence. I constantly try to counteract this pressure with messages of positive body image, healthy nutrition and exercise and the ultimate importance of the inner beauty that emanates from compassion, empathy and kindness.
Yet here I am, worried about how I must appear to those on the other side of the camera as they evaluate my condition – the degree to which my body tremors and contorts. And why? If anything this should be a safe place. After all this is a movement disorder clinic and those “judging” me are clinicians well versed in this disease. Yet I am.
This feeling makes me think of those times in the line up at the grocery store when I fumble for change or when some kind-hearted stranger asks if I’m OK when I’m caught in public in between medication doses.
Parkinson’s has made my functioning at times more difficult and the tremors and mask-like facies have naturally progressed over the last sixteen years, making me acutely aware of the change in my appearance, an insecurity that apparently I have yet to conquer. The last decade has seen me more paranoid about how my pictures turn out, how “natural” my smile looks which much to my frustration, is usually stiff and unusual.
Yet I don’t these aspects are irrelevant and barely noticeable when I see others in my Parkinson’s community – only the warmth and support of others facing the same challenge. I am able to see them for who they are, not the disease they face. Somehow it’s more difficult to look past these changes in myself.
What do these feelings say about myself? Despite the daily challenges and obstacles Parkinson’s disease has presented, I consider myself to be a true optimist, someone who looks at life with a sense of enthusiasm and hope for the future. And that truly hasn’t changed but is that a conditional feeling? Will it continue as my disease advances? I hope so but I guess there’s still work to be done.
One thing that this disease has given me is the gift of introspection. It continues to challenge my sense of self, my priorities and those aspects of life that I choose to focus on. That I truly believe is a gift. I no longer walk blindly through life – I am grateful for the positive attributes I have been taught and I’m acutely aware of the negative qualities that are yet to be conquered. Undoubtedly this chronic illness will continue to challenge me to become a better person and for that I am truly grateful. And hopefully the lessons I learn will serve as an example for my precious daughters as they learn their inherent worth and true beauty that radiates from within.
As much as I can see the blessings that I now enjoy as a result of the trajectory my life has taken, I still struggle…
I was there for my first appointment for a new clinical study, one looking at developing a new protocol for testing drugs directed at dyskinesias, those uncontrollable movements…