Recently, as my sister was packing to move, she found some old photographs of us as teenagers. My nieces came running over to show me the photos and I was embarrassed by how I looked so totally 80′s and so puffy-faced. Don’t get me wrong, I so totally love the movies and music from the 80′s. I just don’t love how crazy we all looked in bright & bold colors/patterns, big shoulder pads, heavy make-up, and big hair. Also, as soon as I saw that round, puffy-face of mine it triggered my memory of how difficult high school was for me. This one photo in particular was from the night of my high school graduation. I remember the on-going drama of what dress shoes I was going to be able to wear with my dress that night. This was not the same drama as most teenage girls trying to find the perfect shoes to match their dress. This was a rheumatoid arthritis driven drama about how would I be able to fit my deformed toes into a dress shoe so I could wear a dress AND walk down the aisle and up on stage to receive my diploma just like everyone else.
When I started my senior year in high school, my juvenile rheumatoid arthritis (JRA) went into a massive flare. I could hardly move my joints and I had the worst fatigue that I had ever experienced. My parents got me in to see a top Rheumatologist in the Phoenix area and he started me on large doses of Decadron, a powerful corticosteroid. He also referred me to a hand surgeon and a foot surgeon to help repair my terribly deformed joints. Thus began my journey into joint-replacement surgeries and powerful medicines to try to calm my immune system from attacking my own body.
I met my foot surgeon and showed him my JRA-damaged feet. He asked what my biggest priority for my feet was. I told him that I could not wear ‘normal’ shoes and that all shoes hurt my feet, especially my big toe on my right foot. I have teeny-tiny size 4 feet, but in high school I was wearing size 6 or 7 shoes to have them big enough to not hurt my toes. I told him I really, really wanted to be able to wear normal dress shoes to my high school graduation that Spring. That was my dream. In March of 1985, he did a major joint reconstruction of all my toes on my right foot and I was able to wear normal dress flats to my graduation. Years later, I was to find out that he was so moved by that request of mine that when he speaks to audiences about this terrible disease, he tells that story about me and my high school graduation and how something that most people take for granted like wearing a pair of dress shoes is something that is a challenge for people with major joint destruction from JRA.
As I look at this photograph now, I can see the puffy-face caused by the high dosages of corticosteroids and it reminds me of how self-conscious and insecure I was back in those years. Those medicines made it possible to function and I was grateful for that. They plumped me up when I had started to waste away, due to the JRA flare, down to 75 lbs by Christmas time of my senior year. High enough doses of corticosteroids give what is called moon-face because they create a round, puffy face. What teenage girl wants to see that in the mirror? I certainly did not like it. Thankfully, over the years of adulthood I have come to see my own unique beauty. Yes, I have scars – many, many scars. In this photo, you can even see the fresh scar on my left wrist from the wrist-fusion surgery I had the very same day as my foot surgery on my right foot. Each scar tells a story of what I have been through in my journey with JRA for 44+ years.
The mandala I chose to share along with this story is of a nurturing bud vase. It has many layers and colors to wrap the flower stems in nourishment and protection. They can grow and blossom in their own time. The flower buds can grow bold and colorful. They can be twisted like my crooked joints and still be beautiful. They can be surrounded by the warm glow of love.
I was definitely a late bloomer in my life. I’d like to think that I am still blossoming. I don’t try to hide my scars. I see their beauty. If you ever meet me and want to ask about a scar, ask me. I am happy to tell you the story behind it.