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Why This Photo Reminds Me of Myself Before Parkinson’s Disease

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Today, I saw a photo by Annie Leibovitz from a collection called Disney Dream Portraits.  There were portraits of celebrities as Disney characters. I can’t remember any of the photos or who was featured because one photo alone stood out like a brilliant star: Jessica Chastain as Merida from “Brave.”

What is Parkinson’s Disease?

Jessica Chastain as Merida from “Brave,” as part of the Disney Dream Portraits series by Annie Leibovitz for Disney Parks

I have no idea who Jessica is. Her celebrity is not important to me. I am drawn to the photo itself. What I see is not a Disney commercial. This is not a “cartoon” depiction from a children’s film, but a portrait of a confident, powerful, independent woman with an arrow drawn in the bow astride a jet-black monster of a horse thundering forward. The singular term “brave” doesn’t begin to describe the woman depicted before me. Not an ounce of fear or hesitation can be detected on her delicately sculptured brow.

Although she looks slight atop her galloping steed, she is by no means weak or helpless. What she lacks in physical prowess she makes up for in the sheer force of inner fortitude. There is no doubt she is a woman to be reckoned with. Strength and determination are etched on her Celtic countenance; there is no room for doubt or fear. She is moving forward solitarily: no doting father, no thoughtful husband, no protective brother or helpful son to see her through to her goal. She and no one else determines her fate. She will fight her own battles, protect her loved ones and stand unwaveringly in the face of adversity. What strikes me most is the ever-so-slight smile on her lips. In my mind’s eye, she is smiling because she is content with herself and doesn’t give a damn what others think of her. She is eagerly looking ahead to the next challenge and adventure with no time to dwell on the past.

As I sit staring at this image on my computer monitor, I begin to cry. Why am I drawn in this way to this silly photo? Do I fancy myself as Merida, princess warrior? No — although I appreciate the lessons taught in the film, the explanation is not that simple. I have early-onset Parkinson’s disease. I like to think before Parkinson’s, I possessed some of the qualities I see in this imaginary woman. Did I ride around my neighborhood atop my trusty horse? No, but I did enjoy going horseback riding now and again. Sadly, that simple pleasure is a thing of the past. Parkinson’s has taken so much of who I used to be.

I was a strong, capable mother of five children. I traveled to Guatemala by myself to fetch my darling daughter, who grew in my heart, not my belly. I battled with school personnel who tried to dismiss the challenges of my special needs children. I nagged and cajoled all of my children to work hard and do well in school. I didn’t give up when two of them were almost taken hostage by addiction.

I was a determined woman who at 35 years of age made the decision to return to college to study social work and accomplished her goal five years later, despite juggling the demands of heart and home. I like to think I was a damn fine social worker for 17 years. I tilted at my fair share of windmills but I never wavered when it came to fighting for my clients. I was a partner to my husband. Together, we worked hard to raise our children and made a wonderful life for ourselves.

Who am I now? My strength is hidden by uncooperative muscles, a clumsy gait and physical weakness. My determination has been compromised by anxiety and depression magnified by Parkinson’s. My independence is slowly disappearing. The woman who taught her little ones to dress themselves and tie their shoes needs help herself getting dressed. The woman who traveled here and abroad, ready for a new adventure is sidelined. Her traveling days are a pleasant memory. The woman who loved to read and learn new things now has trouble concentrating and can’t remember a newspaper article she just finished reading. The strong, capable caregiver is now being cared for by her loving family.

When I look at this marvelous photo, I feel a profound sense of loss. I am grieving for what Parkinson’s has stolen from me. I look at my friends with busy lives, devoted to grandchildren, and enjoying a new chapter in their relationship with their spouses. I feel left behind.

Someday, I hope I can look at this photo without sadness. Instead, I pray my bittersweet memories will be a comfort to me. For now, I try every day to contribute in some small way. I will not give into Parkinson’s. The woman I am won’t let me.

Originally published: January 14, 2016
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