"I don’t let my limitations define me - I learned to dance to my own rhythm. You can too."

J.G. Chayko
 

"I am not discouraged by the things I can no longer do – instead, I explore pastimes that my previous life didn’t allow me to nurture.  I don’t let my limitations define me - I learned to dance to my own rhythm. You can too. "

Behind the Scenes

The grey light filtering through the bedroom curtain was the only indication of the morning. Black clouds filled with another bout of bitter November rain hung low in the sky. I struggled to open my eyes beneath heavy lids coated with the crust of insufficient sleep. My joints were thick, swollen and stiff, my skin hot to the touch. It hurt to move. Overnight my fluid body had become a rigid, immobile entity I didn’t recognize. For the next several weeks, I woke up the same way, always improving a little as the day wore on. I was perplexed by this mysterious ailment that took up residence in my body. It was like a flu, but the pattern didn’t fit. A trip to the doctor and one specialist later, I had an answer: Rheumatoid Arthritis.

 

I was 38 years old, a fit healthy young woman, a dancer and an actress. I’d spent the last 30 years of my life studying various forms of dance, performing in theatre and celebrating the ability to manipulate my own body. Dance was the foundation of my life. It taught me confidence, grace, and strength. It fueled my theatrical world and inspired the way my characters moved. My artistic life was built on movement, and now I had a disease that threatened my mobility.

 

I wasn’t prepared for the way my life changed. The stamina and vitality I’d always possessed began to dwindle beneath the pain and fatigue of inflammation. I struggled to keep up with the velocity of my life and had a hard time sustaining a full-time illness, a full-time job and a full-time artistic life. Something was bound to give – and it did. Dance was the first casualty. The pressure of the studio floor beneath my feet was too hard on my body. Theatre came next. Pain and fatigue made it difficult to keep up with rehearsals and performance, especially after working all day. RA was unpredictable. I didn’t know how I was going to feel from one day to the next. It was difficult to make plans. My artistic life sustained and inspired me – it was my passion, and the idea of losing it was unacceptable. I wasn’t about to let it go. I needed to make a change.

 

I am fortunate to have the support that allowed me to switch from full-time work to part-time. Part-time work allowed me to continue to contribute financially and gave me time to take care of myself. I learned how to listen to my body, to slow down and rest. I learned to say no to demands on my time, and not feel guilty. I attended physiotherapy and learned how to move in new ways – swimming and yoga helped me keep my flexibility and strength. I found a balance that supported time with family and friends, without the crushing exhaustion at the end of a work day. I was determined to keep on with the artistic life I’d built so I revived a childhood passion - writing.

 

Writing allowed me to find to fit the life I wanted within the barriers of chronic illness. The words helped me get past the obstacles and sculpt a new path for my life. I published a couple of short stories and some poetry, and then embarked on a writing journey that changed my world. I created a blog called The Old Lady in My Bones and wrote about living the best life I could with RA. I connected with other arthritis warriors and became a regular guest blogger with a fabulous organization called CreakyJoints. I published articles and contributed to a book with other amazing advocates called Real Life Diaries: Living with Rheumatic Disease. With time and patience, I was able to return to the theatre and dance class on a limited basis. Last year I had the privilege of choreographing a show where partial proceeds were donated to a local organization supporting children living with juvenile arthritis and other systemic diseases.

 

There is a learning curve to a life with chronic illness. It takes time to understand how the disease works in your body. When I focus on my passions, I can sometimes forget I have a chronic illness, but I trust my body to remind me when I’ve gone too far. I celebrate the small victories, whether it’s getting out of bed, walking two blocks or climbing a mountain. I am not discouraged by the things I can no longer do – instead, I explore pastimes that my previous life didn’t allow me to nurture.  I don’t let my limitations define me - I learned to dance to my own rhythm. You can too.

 

Behind the Scenes

The grey light filtering through the bedroom curtain was the only indication of the morning. Black clouds filled with another bout of bitter November rain hung low in the sky. I struggled to open my eyes beneath heavy lids coated with the crust of insufficient sleep. My joints were thick, swollen and stiff, my skin hot to the touch. It hurt to move. Overnight my fluid body had become a rigid, immobile entity I didn’t recognize. For the next several weeks, I woke up the same way, always improving a little as the day wore on. I was perplexed by this mysterious ailment that took up residence in my body. It was like a flu, but the pattern didn’t fit. A trip to the doctor and one specialist later, I had an answer: Rheumatoid Arthritis.

 

I was 38 years old, a fit healthy young woman, a dancer and an actress. I’d spent the last 30 years of my life studying various forms of dance, performing in theatre and celebrating the ability to manipulate my own body. Dance was the foundation of my life. It taught me confidence, grace, and strength. It fueled my theatrical world and inspired the way my characters moved. My artistic life was built on movement, and now I had a disease that threatened my mobility.

 

I wasn’t prepared for the way my life changed. The stamina and vitality I’d always possessed began to dwindle beneath the pain and fatigue of inflammation. I struggled to keep up with the velocity of my life and had a hard time sustaining a full-time illness, a full-time job and a full-time artistic life. Something was bound to give – and it did. Dance was the first casualty. The pressure of the studio floor beneath my feet was too hard on my body. Theatre came next. Pain and fatigue made it difficult to keep up with rehearsals and performance, especially after working all day. RA was unpredictable. I didn’t know how I was going to feel from one day to the next. It was difficult to make plans. My artistic life sustained and inspired me – it was my passion, and the idea of losing it was unacceptable. I wasn’t about to let it go. I needed to make a change.

 

I am fortunate to have the support that allowed me to switch from full-time work to part-time. Part-time work allowed me to continue to contribute financially and gave me time to take care of myself. I learned how to listen to my body, to slow down and rest. I learned to say no to demands on my time, and not feel guilty. I attended physiotherapy and learned how to move in new ways – swimming and yoga helped me keep my flexibility and strength. I found a balance that supported time with family and friends, without the crushing exhaustion at the end of a work day. I was determined to keep on with the artistic life I’d built so I revived a childhood passion - writing.

 

Writing allowed me to find to fit the life I wanted within the barriers of chronic illness. The words helped me get past the obstacles and sculpt a new path for my life. I published a couple of short stories and some poetry, and then embarked on a writing journey that changed my world. I created a blog called The Old Lady in My Bones and wrote about living the best life I could with RA. I connected with other arthritis warriors and became a regular guest blogger with a fabulous organization called CreakyJoints. I published articles and contributed to a book with other amazing advocates called Real Life Diaries: Living with Rheumatic Disease. With time and patience, I was able to return to the theatre and dance class on a limited basis. Last year I had the privilege of choreographing a show where partial proceeds were donated to a local organization supporting children living with juvenile arthritis and other systemic diseases.

 

There is a learning curve to a life with chronic illness. It takes time to understand how the disease works in your body. When I focus on my passions, I can sometimes forget I have a chronic illness, but I trust my body to remind me when I’ve gone too far. I celebrate the small victories, whether it’s getting out of bed, walking two blocks or climbing a mountain. I am not discouraged by the things I can no longer do – instead, I explore pastimes that my previous life didn’t allow me to nurture.  I don’t let my limitations define me - I learned to dance to my own rhythm. You can too.

 

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