Saturday, April 26, 2014

Ask John

Do you consider yourself courageous?

I do consider myself to be be courageous. Living with Duchenne muscular dystrophy has forced me to have courage. If I spent my life cowering in the face of this scourge of a disease, I would be incapable of seeing the joy of life, and would lead a miserable existence. Having courage does not mean that I never have fear. I just don't let fear get the upper hand. Fear is a part of being human.

Monday, April 21, 2014

Living Legacy Award

On the evening of Saturday, February 22, I received a great honor. I was one of seven individuals presented with the Living Legacy Award by the Women's International Center(WIC). The awards dinner took place at the Crowne Plaza Hanalei Hotel in San Diego. Every year they give the award to women, and men who make a difference in the world. Because of my blog, and my advocacy for people with disabilities, I was given this award. My parents, my brother Bill, my sister Bibbi, and Ernie, my long-time caregiver were there to share in this moment

The other award recipients have done bigger things, than my limited efforts. But, this award shows that even small things can make a difference in the world. If one person reads my blog and is encouraged to better their life, or a person with a disability is helped by my advocacy, then I have made a difference. I hope to live up to this award. It has encouraged me to do more to help others. This award was not awarded to me out of pity for my disability, and was not awarded to me based on the fact that I have a disability. It was awarded because of my actions.

I congratulate the other recipients: Betty Beyster, Sylvia Earle, Ph.D, Kristen Farmer, Nadine George-Graves, Ph.D, Dorothy Dale-Kloss, and Marilyn Lane. Betty Beyster is a leading advocate for education among health care professionals, researchers, and scientists to encourage medical advances. Sylvia Earle is a world-renowned oceanographer, author and explorer. She was named Time Magazine's first Hero for the Planet and founded Mission Blue to save the oceans. Kristen Farmer is a pioneer of autism research and treatment, and founder of ACES, which helps autistic individuals reach their full potential. Nadine George-Graves is an author in African-American and Women's studies, performance, theater and dance history. Dorothy Dale Kloss, at the age of 92, is the oldest performing dancer, and proponent of health, wellness, and vitality. She entertained the crowd with her tap dancing. Marilyn Lane is a horsewoman who supports the use of horses to treat veterans with PTSD. It was an honor to be included among such a group of individuals.

Friday, April 11, 2014

Ask John

You have always had such a positive attitude. Is this something you had to work at, or does it come naturally?

My positive attitude is something that I had to work at. From an early age I worked at creating this positive attitude, which has been an important part of getting through my life with Duchenne muscular dystrophy. I decided early on not to surrender to this disease. At times,The challenges brought on my DMD are enough to cause a saint to swear, but it is important that I try my hardest to keep positive. There have been many trying times, when it has been a hard struggle to remain positive. At these times, I have had feelings of hopelessness and negativity. But, I have always managed to prevail against these feelings. If I did not develop a positive attitude, I could have been a negative, and self-pitying bastard, who would just exist as if in death's waiting room, and getting little, or no enjoyment out of life. I wouldn't be able to enjoy the gift of life, if I had a persistent dark cloud over my head.