Ask John

How did you manage to ignore the folks who foretold doom and a short life for you? 

I managed to ignore the folks who foretold doom and a short life for me by living my life as normal as possible. If I went through my life letting the doomsayers get me down, I would not have been able to enjoy life. I would have given up on life if I had accepted that I would not live past my teenage years. Also, since I made it past my teenage years, I consider each birthday as a victory over the doomsayers. In a few months I will be forty-eight and will thumb my nose at those who thought I would be gone a long time ago. 

Ask John

Do you believe in a higher purpose for your specific challenge?

I don't believe that there is a higher purpose for me having Duchenne muscular dystrophy. It is the result of a genetic mutation, that I was unlucky to be born with. I have never been one to see purpose in everything that befalls us. Things happen. If there is any purpose to my challenge, it is created by me. I have used my challenge to give purpose to my life, namely, advocating for and providing encouragement for people with disabilities, and creating awareness of disability.

Ask John

Do you prefer that people ask about your disability, or is that rude?

I don't mind when people ask me about my disability. It is a great way to educate people about disability and to break down barriers between the disabled and non-disabled. I feel it is only rude when a person asks questions about  my disability without introducing themselves and making some normal conversation first. It is also rude for a stranger to ask deeply personal, or embarrassing questions. Most people would not want strangers to ask about their sex lives, or bowel movements,  for example.

Ask John

Have you had romantic relationships? What were/are your challenges, successes there?

I have never had any romantic relationships. Though I have tried to find romance, success has eluded me. This lack of success is due to many challenges. These challenges don't make having a romantic relationship impossible, just more difficult.

The biggest challenges to having a romantic relationship have to do with my disability. I usually don't like to blame my disability, but from experience I know this is true.

For a romantic relationship to work, the woman has to see beyond my disability and accept me for who I am. This is more difficult because my disability is so visible. I am in a power wheelchair, on a ventilator that is connected to my trach, which is inserted in my neck, have very limited movement (I can only move a few fingers, and my head), require around the clock care, and need help doing almost everything. This all can be too much for many women.

The fact that I use a power wheelchair can be an issue, especially since I can't take part in most physical activities, would have trouble doing extensive traveling, and can't keep up with someone who leads an active lifestyle. I could be seen as holding someone back.

Having a trach and ventilator can be intimidating to many women. They don't know how to deal with it. It is a visible reminder of the severity of my disability.

My limited movement makes it difficult to do many things. I can't hold a woman's hand, can't hug back, caress or touch. All touches of affection are one-sided. Women who consider sex an important part of a romantic relationship, are turned off by my disability.

My need for around-the-clock care, and help with almost everything, is a big deal-breaker. Many women want a man who can take care of himself. They don't want to be a nurse.

The above challenges have to do with a romantic relationship with non-disabled women. Looking for a romantic relationship with a woman with a disability also has its challenges. Just the fact that both people have a disability does not automatically lead to a romantic relationship. Women with less severe disabilities don't always want to be with a guy with a more severe disability. In this case, just like with the non-disabled women, they want a guy that can take care of himself. Women with severe disabilities, I have found, sometimes would prefer a non-disabled man, so they can have someone to help them out.

Besides the difficult challenges concerning my disability, I also face the challenges that all men, with or without disabilities face in seeking romance. It is always a challenge to find compatibility. There are so many factors such as, shared interests, religious beliefs, political beliefs, attitudes, distance, culture, family, and so many others. Of course, these factors can be overcome if enough is shared in common to make it work. It is said that opposites attract.

Ask John

What would you tell the family of a newly diagnosed boy with Duchenne muscular dystrophy (DMD) as far as what they can expect in the coming years?

I would tell the family of a boy recently diagnosed with Duchenne muscular dystrophy, that in the coming years they can can expect many changes and challenges with him. These changes and challenges will create frustration, anger, sadness, and feelings of hopelessness. This is natural. But, there will also be happiness and moments of accomplishment. They have to focus most on the happy and positive things in the boy's life. His life, and the family's life is not over with DMD.

DMD takes things away as the years go on. The first, and most devastating thing that DMD takes away is the ability to walk. This usually happens around the age of ten. I was eleven when I could no longer walk and became a wheelchair user. It wasn't easy to lose the ability to walk, but walking had become a struggle, and I fell down a lot. Having to use a wheelchair wasn't all that bad because it relieved the struggle and the falling down. The wheelchair was like a friend. The wheelchair is nothing to be afraid of.

Over time their boy will lose strength in his arms and hands. This speed of this can vary widely. I didn't completely lose the strength in my arms and hands until my thirties. Now I can just move a few fingers, enough to drive my power wheelchair. For a long time, I was able to use the TV remote, to move the computer mouse, to feed myself, to brush my teeth, to write with a pen, and to turn the pages of books. As time went on, it became more difficult to do these things. But, they and their boy will find ways to improvise, find new ways of doing things, and find new things to do. The use of adaptive equipment will allow him to do what he may no longer be able to do, such as using a computer.


Note to readers: Send questions about me to johnrsf@pacbell.net

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.

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.