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.

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.

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.

Ask John

What is your favorite part of the day?

My favorite time of the day is sunset. Watching the sunset is one of the simple pleasures in my life. Seeing the sky painted with beautiful colors creates inside me a feeling of pleasure and inner peace. Negative thoughts and feelings melt away. As I watch the sunset, I feel awe at the beauty and majesty of nature. I also feel a connection to something larger than myself. It is a personal spiritual experience.

Note to readers: If you have questions you want to ask about me, send them to johnrsf@pacbell.net

Ask John

If you could give advice to someone recently paralyzed that used to be very active and thinks life is not worthwhile anymore, what would you say to them? I have a resident at my work in this situation. It is seven months post-accident and they are going through therapy to try to regain some motion of the lower limbs as he has some limited feeling. He does have use of his hands, but is severely depressed.

It is natural to be be depressed at such a drastic change in your life, but if you allow the depression to take over, it will make it difficult to move forward. When this is combined with self-pity, it can make it difficult to see the good in life. You may not be able to do all the things you once did, but you can find new things to do, or new ways of doing things. Once you adapt and adjust, and realize that you are able to do more than you thought, then life will seem much better. Life is not over with a disability.  There will be challenges, and frustrations, but there will be good moments as well. As Dolly Parton said, " If you're feeling low, don't despair. The sun has a sinking spell every night, but it comes back up every morning. The way I see it, if you want the rainbow, you gotta put up with the rain."

Ask John

What is Your Favorite Song?

My favorite song is "Imagine" by John Lennon. It creates a vision of a positive, hopeful, and peaceful world. This world may not be attainable, but it is nice to contemplate such a world. It encourages us to try to make this world a better place for all. Whenever I hear this song, I am overcome with a peaceful, easy feeling. It is timeless.

"Imagine"

Imagine there's no heaven

It's easy if you try

No hell below us

Above us only sky

Imagine all the people

Living for today...

Imagine there's no countries

It isn't hard to do

Nothing to kill or die for

And no religion too

Imagine all the people

Living life in peace...

You may say I'm a dreamer

But I'm not the only one

I hope someday you'll join us

And the world will be as one

Imagine no possessions

I wonder if you can

No need for greed or hunger

A brotherhood of man

Imagine all the people

Sharing all the world...

You may say I'm a dreamer

But I'm not the only one

I hope someday you'll join us

And the world will live as one

Note to readers: If you have any questions that you want me to answer about myself, feel free to leave them on the comments section of this blog, or send them to johnrsf@pacbell.net. 

Ask John

What is the one thing you want most in life?

The one thing I want most in life is the love and companionship of a woman. I lack that special bond that comes from a relationship. Friendships are great, but it is not the same. This has been the missing ingredient in my life for far too long. I may not get what I want, but at least I am still trying. Hope keeps me going.

Note to readers: Post questions about me in the comments section of this blog, send to my e-mail, or if you are a Facebook friend you can send questions through there.

Ask John

This is the first post of what I hope will be a continuing feature on my blog. This feature is called Ask John. I will answer questions people ask about me. The questions will come from Facebook friends, questions posted in the comments section on my blog, through my e-mail, or other sources. These questions can be mundane, philosophical, profound, controversial, etc. I have already received questions, which I am in the process of getting around to answering. If all goes well, I will post a question and my answer every Friday. I will not mention the names of the questioners, just the questions. Keep the questions coming.

What has been the most challenging part of living with (Duchenne) muscular dystrophy as a child and now as an adult?

The most challenging part of living with Duchenne muscular dystrophy as a child was trying to fit in with my peers. It was a challenge since most of my peers were non-disabled, and I could not physically do many of the things that they were able to do. Also, some of my peers were probably unsure about how to deal with me and my disability.

The most challenging part of living with Duchenne muscular dystrophy as an adult has been meeting women who can see past my disability, and would want to be in a relationship with me. I have women friends who can see past my disability. I value these friendships, but they lack the constant companionship and deep bond found in a relationship.

Happy New Year

To start the new year, instead of talking about resolutions, the past year, and what I have planned for the new year, I would like to share the wisdom of Loren Nancarrow. Loren died on Saturday after an eleven month battle with brain cancer, which he chronicled on his blog, The Nancarrow Project. I only knew him from watching him on the local news stations in San Diego. Besides being a newscaster, he was also an avid environmentalist. By sharing his experiences and thoughts about living with brain cancer he encouraged and inspired many, not just those with cancer.

In the article, "Five Lessons Loren Nancarrow Taught Us", by Matthew T. Hall, which appeared in The San Diego Union-Tribune on December 28, he shares five words of wisdom from Loren Nancarrow. These lessons can serve as a great starting point for the new year, and something to follow throughout the year, and throughout your life.

Here are the five lessons Loren Nancarrow taught us:

1. Find reasons to rejoice
2. Anticipate "the possibilities of tomorrow."
3. Remain in awe of sunsets
4. "Wherever they are, whatever they may be, seek out your passions and cultivate them" while also being mindful "that it is far better to do good for others, than to do good for oneself."
5. Be curious. Start by finding another lesson yourself.

Rest in peace, Loren and happy new year to all my readers.

Christmastime

Another Christmas has come and gone in the blink of the eye. Though the season has ended, the spirit of the season should not. As Scrooge says after his epiphany, "I will honour Christmas in my heart, and try to keep it all the year." So should we all. Peace, joy, goodwill, and giving are the hallmarks of the season, but they should be practiced all year.