About Us Stories
I Am Not My Disease
By Lance Calisch
“I AM NOT MY DISEASE”.
This quote from Sue Glass is one of the many profound statements that emanated from the Dystonia Daze VIII Appreciative Inquiry exercise. Appreciative Inquiry, first posited in 1980 by David Cooperrider and Suresh Srivastva, is not a tool but more of a philosophy. Basically it’s about thinking positively and stating our views in terms of what we want to be.The great Dali Lama put it best when he said “be the change you want in the world”. So, as Sue said, you are not ST and ST is not you.You are a wonderful human being with the same value as any human on this earth. The end results of our Appreciative Inquiry session were three Pearls of Wisdom from each of eleven groups.Through an appreciative dialogue each group boldly stated their shared wisdom for living in the world with ST. The complete list is attached to the end of this article.The list is synthesized below.The list aggregates into statements about others, statements about you, and statements about God.
Others
None of us is alone in this world; we need others.This runs contrary to the strong and silent type that is sometimes romanticized in books and film. John Wayne, Erol Flynn, and Superman have single-handedly been saving the day for ages. But that’s not reality.When my neighbor resided his house he had a work party to remove the old siding.We worked, we skinned our knuckles, we laughed, and we got the work done.And I’m about to re-roof my house so I’ll invite those same guys for a work party at my house.We are not alone on this planet; quite the contrary.We are a web of life that thrives on relationships. The ST Pearls in this category are as follows:
- Share with and love others
- Make good friends and form a support system
- Be selfless, focus on others
- Look for support from others especially the ST/Dystonia organization
- Maintain supportive relationships
- Share your story and issues with friends and family
- Value people
- Find a need and fill it
- Don’t get in deep water without a life jacket
You
Your relationship with others does in fact include you. So, how will you show up in this relationship? These ST Pearls can be further categorized as follows:
Positive Thinking
- Don’t dwell, get well
- Be positive
Personal Qualities
- Be authentic, be yourself, be honest
- Accept yourself
- Don’t be ashamed of Dystonia or yourself
- Be understanding of yourself and others
- Practice good listening
Be Deliberate and Assertive
- Stay focused
- Be proactive for your own well being
- Be a firm believer in taking care of yourself. For instance, be assertive in your relationship with your health care provider
- Be assertive with all aspects of life
- Don’t be afraid to stand up for yourself
- Be persistent
- Persevere
- Life is a series of challenges to be solved
Humor
- Have a sense of humor
- Have fun
- Laugh at yourself too
- Laugh often
- Live, laugh, and love
God
Five of the eleven groups listed a relationship with God in their top three pearls of wisdom.
- Trust in God and others
- Believe in God
- Trust in the Lord
- Have faith in God
It was an interesting exercise and one that had the audience engaged for over an hour. Most of the folks I talked with afterward enjoyed it and left for home with a little more pep in their step. So, take it from your fellow ST’rs, be positive, be pro-active, and may the Lord be by your side.