Welcome to My Pity Party

Today began with a pity party and I had to take out the hats.

Like most people with Parkinson’s (PwP), our days — even our hours and minutes — are a roller coaster ride of highs and lows. My day started extremely low, and my pity party began as soon as I shakily got out of bed. I was totally fatigued even though I’d had a good night’s sleep.

What is a pity party?

In 2007, I battled tonsil cancer, and Steve, my late life partner, was by my side at the time with his steadfast support. Critical to my healing and recovery was Steve’s ability to help me keep my sense of humor. At one very low point during radiation treatment, I was whining about my pain, and Steve said, “Do you want me to get the hats?” I asked, “What hats?” Steve replied, “Hats for the pity party.” We both laughed so hard. From that moment on, I knew I would survive cancer.

I bought some party hats that we frequently brought out whenever one of us was having a pity party. The hats never failed to bring a smile to our faces.

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Why was I having a pity party today?

As I struggled to get dressed this morning, my sports bra was not cooperating. I had to battle to put it on, and I broke into tears of frustration when I realized I’d put it on inside out. Only PwP could truly understand the despair over an experience like this. One would later tell me she would have left it inside out. I will file these words of wisdom for the next time.

Next, I had no confidence in my ability to move without knocking things over or bumping into furniture. I was depressed and apathetic, and I was not feeling motivated to go to Rock Steady Boxing (RSB). Then, I tried to organize some paperwork into piles, and I was dumbfounded! I could not figure out how to do this, so I suspect my cognitive skills are starting to fail me. My disease is progressing.

How did I handle this setback?

Almost as if Steve were whispering in my ear, I realized I needed to put away the pity party hats and get on with my day. I needed to go on autopilot to head to RSB class. If I thought about it too much, I would not have gone since I knew it would be a tough workout.

Why was this class different?

This week marks the one-year anniversary of when RSB was first offered in Sag Harbor, New York. At the start of each class, as is her custom, Sensei Michelle has both volunteers and participants gather in a circle, and she asks each of us her question of the day. This is so we all get to know each other better. These questions can be something like “What is your favorite movie?” or “What did you do this holiday weekend?”

What was the question of the day?

Today, Sensei Michelle asked us to reflect on what RSB means to us. It was an emotional moment for most of us. Sensei Michelle said that after all her years of teaching martial arts, she has found her calling in coaching RSB. Some of the volunteers indicated they found the students so inspiring. Another volunteer’s late father had Parkinson’s, and she wanted to help others with the disease. The common theme among the students’ responses was that they loved the camaraderie and support we get from the class. More than one student said that fellow participants are like family. Others shared that they would be isolated if not for RSB, and the socialization with others who understand what it is like to have Parkinson’s is invaluable.

Time to get busy!

It was time to get to work, and although I felt so fatigued, I was able to live in the moment of this class and push myself through the drills. As we finished up the class, Sensei Michelle put me on the spot and said I was going to break wood again — only this time, it was two pieces of wood instead of the one piece I had broken nine months ago. She knows me so well. I did not know she was going to do this, so I had no time to stress about it. It was the roller coaster high I needed today. The times of triumph like this keep me going. For the briefest of moments, I could remember what it was like to feel strong and confident before I slipped back into my current reality.

Sensei Michelle, thank you for believing in me and for giving me the gift of a glimpse at my former self! Thank you RSB volunteers and my fellow boxers for your incredible support and encouragement, not just today, but throughout the year. All of you inspire me to continue fighting this disease.

“Every successful individual knows that his or her achievement depends on a community of persons working together.” –Paul Ryan

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