This week I am emotional. One of the phrases we use so often is “Myhre Strong” or “Myhre Warrior.” While I understand the intention behind the phrases, sometimes I am feeling anything but strong. The battle against this disease is relentless.

Why am I emotional? A culmination of things. My social security disability finally got approved after over a year long battle. I feel a mixture of joy and sadness. Joy that money is finally coming in. Sadness that I had to give up my career at what should be the pinnacle of it. This led me to realize that my life has been irrevocably changed by Myhre in so many ways even before I knew I had it.

I battle social anxiety every day. In my youth, it crippled me. I had selective mutism. I still battle feelings of inadequacy and fear of not being able to fit in. Every. Day. I have spent years in therapy learning how to navigate these issues and still go weekly to talk about my social anxiety among other things. If I had a choice, I would shrink back into myself and silence. I do not allow myself that choice.

In choir last night, the simple task of humming a note brought me to my knees. I cannot hum without sounding nasal. I PHYSICALLY cannot do this. How many years before realizing or knowing that a hole in my soft palate caused this. How many times did I try and try to fit in. How many times did I think something was wrong with me for not being able to achieve this goal. When all along, it is an anatomical difference that I have no control over.

By simply admitting to myself and the director that I cannot do that, we found a solution that works. I sing an oh while the choir hums. I feel like, as a person with Myhre, I have been asked to fit my body into a round hole when it was square over and over. All through my childhood, my adulthood, and my career. There is something freeing in being able to say yes! I am different!!! Yes! I need help where others might succeed without it.

My beauty is my difference. My strength is my ability to see where I need help and ask for it. My warrior comes from facing this daily and still fighting on.

Please do not feel you are the only one struggling. We are a community that can surround you if you are feeling weak and exhausted. Reach out. We will be there for you. As always, I am available to chat.