Some people have doubted my illness. Some people have found it overwhelming. Some have said it seems to be my main focus. I think if faced with pain so unbearable& yet you smile...to have your body turn against you...having to alter your shoes, clothes, movements, dishes, furniture... to find out daily you are now at the mercy of your disease and the many other diseases that soon got you because of dystonia ...to have your life totally turned upside down& somehow through physical therapy, therapy, meditation, etc. Not just what you have forever LOST but what you have now gained..
This forever journey.the doctors.surgeries.medications.
To not bury your head in the sand but take each moment (good and bad) to turn it into strength (for me, speaking at events, new patients, strangers, all the you tube videos) has made me stronger.
Yes I pout when I want to just jump in the car& drive or type on the computer or even walk the dog& I can not... but I focus on what I can do.sometimes when really bad, it may mean a nap or a call to a close friend or an old classic 80.s movie... but my journey is not unique... people will come in& out of our lives, judge or miss understand. They may want the old funny a-ok Amy back& can not accept change. But people lose friends when they change, maybe have kids, different job, on& on.
My journey just happens to be up& down& less transparent when you don't see when the hour visit wears me out for days...
I do not hold malice for the people gone and their judgements but they are part of the fuel that keeps me being an advocate until one day we are all cured. It is not a small part of my life, it is my full time job
Dealing with dystonia, chronic pain, isolation, essential tremors& spinal stenosis. I would be a fool to assume if I ignored it it would just poof go away. I miss many people but I understand that things change. I am grateful for the friends and family who try to understand& know how important it is to me to always be an advocate. It is one of the biggest on going events in my life.