What is your tell?

A common complaint among people with RSD is that others cannot understand their hardship because they don't look sick. Sometimes an individual will have a swollen hand of foot but most commonly they look relatively normal. I know this sounds like a good thing, but sometimes it is tough to feel understood when someone can not tell you are in severe pain. However, as I began to ponder this issue that exists among the pain community, I realized I do have a 'tell' that allows my friends and family to know it is a tough moment.

When I am feeling good, my voice sounds about ten octaves higher than normal. In addition, I will talk your ear off! This part I am not kidding about. At times, it feels like someone has been holding back a slingshot and then let it go. When the pain is high, I will usually just sit and listen. I begin to chew my lip, and I will figit with anything in my hand. The tone of my voice lowers and I become much more introverted.

I am sharing my 'tell' signals because  I want others to think about what non-verbal gestures suggest that they are hurting. Whether it is physical or emotional pain, we all have signs that give away we are experiencing a tough moment. Maybe by embracing and sharing these signs we will be able to communicate and be understood by others better. Maybe my 'tell' will not allow me to be the best gambler in Vegas, but they do allow others to understand and support me.

You are not alone

Over the past couple of weeks, I have received emails and messages thanking me for sharing my journey with chronic pain. The one theme that is constant in these messages is the thankfulness that they are not alone. As humans, we find strength in knowing that others have gone before us with enough strength and perseverance to make it through. We learn that we are not alone in our struggles and that we are almost visibly linked to other individuals in a supernatural kind of way. This connection actually took me a while to process and accept. I felt uncomfortable being linked to others with hardships and would often times hide my struggles. Yet, as I opened up and began to share, others in turn reciprocated.  I actually felt more connected and less lonely. It turns out I had been the one isolating myself. By hiding my struggles, I made it very difficult for others to connect.

This lesson has been life changing for me. While I still struggle with letting others see all my imperfections, I concentrate on the connection to others that I will obtain from sharing. I hope that each of you knows that you are not alone today. The more we share our stores the more connected and empowered we feel.

Michael J. Fox

I have found inspiration from other individuals fighting chronic illness.  One of the individuals that I have found who is full of passion, which actually feels infectious, is Michael J. Fox.  My first exposure to Michael was his role as Alex P. Keaton on Family Ties.  Soon after that, I became mesmerized by his portrayal of Marty McFly in Back to the Future.  I even had Back to the Future glasses that I obtained at Pizza Hut which I would wear around the house.  Together with my sister, we would pretend that we too were from the future. 

Right after I was diagnosed with RSD, Michael was coming out with his first memoir, Lucky Man.  I can remember thoroughly reading each page as I tracked his journey from denial to complete acceptance.  His dedication to "making meaning" of his illness by starting a Michael J. Fox Parkinson's Foundation showed me a visual side of what it looked like when someone used their illness to help others.  I am currently reading his latest book called Always Looking Up and continue to be inspired by his optimism and dedication. 

The Lord continues to guide me in the way to use my illness to help others.  I often wonder how he will use one girl in Daytona Beach, Florida.  However, I rest in the fact that He knows the plans He has for me.  I hope that each of you would continue to find inspiration in the lives of other individuals today. 

Jessica