Saturday, July 15, 2017

My Birthday

On July ninth, despite Duchenne muscular dystrophy, I reached forty-nine. I was not expected to make it this far. This birthday, like every one, is a gift--. the gift of more time to enjoy life. Though living with Duchenne muscular dystrophy is not always pleasant, or easy, and can be frustrating, I still feel glad to be alive.

In life there is always some form of suffering, but there is also pleasure and joy. If there was no suffering, it would not make the moments of pleasure and joy so wonderful.

Instead of dwelling on the unpleasant aspects of my life, I choose to focus on the good things in my life.  It is not always easy to do this, but it is better than having a dark cloud always hovering over me. 

Tuesday, April 05, 2016

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. 

Friday, June 05, 2015

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.

Monday, March 23, 2015

The Forty-six-Year-Old Virgin

In the comedy, The 40-Year-Old Virgin, a nerdy guy (Steve Carell) has never had sex with a woman. The idea of a guy being a virgin at forty is fodder for jokes. It also perpetuates the belief that a man still being a virgin at forty makes him a loser and not a real man.

As a forty-six-year-old virgin, I take issue with this. Not having had sex with a woman does not make me a loser, nor does it make me less of  a man. The worth of a man should not be based on whether he has had sex or not. Besides, there are more important things in life to aspire to than sex. There is nothing wrong with wanting to experience it, but you have to put things in perspective.

Some disabled guys choose to use the services of prostitutes or escorts. As a younger guy I can't say I wouldn't have gone that route. I had my chances, especially while visiting  Nevada and Amsterdam. To be honest, I had some regrets at those times. But, I'm glad I didn't go that route. I would prefer to have sex with a woman I know, and love.

It is possible that I may remain a virgin for the rest of my life. I am not pleased with this prospect, but that is life. My life is not over because of that. But, when a pleasure is denied, it is human nature to want to experience it.

Friday, March 13, 2015

Chris Webb (1968-2015)

On March 10th, my friend, Chris Webb died at the age of forty-seven. It is a loss to all who knew him, as  well as to the whole Duchenne muscular dystrophy community. I never saw Chris in person. He lived across the country in Stoughton, Massachusetts in a rehab hospital, where he lived for the past twenty-five years. I made his acquaintance through an internet group called DMD Pioneers. We communicated via internet chat. Like me, he was ventilator-dependent. We shared our experiences, and feelings about living with DMD and being vent-dependent. He was a kind, and down-to-earth person. Though he had his struggles, frustrations, and down days, he continued to soldier on. His fighting spirit kept him going, as well as his passion for heavy metal music. He was preparing to break free from the isolation of the rehab hospital and move in to a group home. Though he had some fear, and trepidation about this move, he moved forward towards his freedom. He didn't make it, but he had hope to keep him going. Chris fought the good fight until the end. Farewell, my friend!

Monday, March 09, 2015

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.

Friday, September 05, 2014

Scott Sands 1966-2014


 On Friday, August 1st, the Duchenne muscular dystrophy community lost another member. This time it was my friend, Scott Sands. He died a day short of his forty-eighth birthday.
I never met Scott in person. He lived on the other side of the country in Orlando, Florida. We communicated over the internet, followed each other on Facebook, and read each other's blogs. I met him him on an internet group called DMD Pioneers. Like me, he used a ventilator, and was one of the older guys with DMD. I enjoyed his sense of humor, his good nature and admired his determination to live life on his terms. DMD would not prevent him from enjoying life.
Scott, despite DMD, lived life to the fullest. He fought the good fight against this disease for as long as he was able. As he said in his blog post for his forty-fifth birthday: "The longer I am able to fight, the more rounds I win, and the more I am reminded to appreciate life and take each day as it comes." To him, every moment of life was to be cherished. He never knew when it could all end.
Duchenne reality denies me the luxury of living in terms of years, months, weeks, or days. Heck, with the shape I'm in, even hours and minutes are questionable. I'm dealing solely with moments now, and my goal is to maintain my relentless desire to seize every single one of them!
Living in the moment, and feeling fortunate to be alive is what helped him to cope with DMD. He wrote in his blog on his forty-fifth birthday:
...moments accumulate and grow into futures, and futures comprise lifetimes. By focusing on moments, I can relish in looking back on them from a future that was never promised. I remember being a mere teenager and dreaming of a future....I nearly lost my life quite a few times since then, but I have survived through it all to get here. This is where I wasn't supposed to be, but somehow I made it! This is the future, and I am fortunate enough to be sitting here--far beyond my life-expectancy projected by the so-called experts--and recalling 45 years worth of moments.
Scott also found love. He met Rebekkah over the internet, and they fell in love. Rebekkah is one of the rare cases of a woman with Duchenne muscular dystrophy. She lived across the Atlantic in Liverpool, England, but this didn't prevent the relationship from blooming. Though their relationship started on-line it was real. They got engaged over video chat. But, it didn't end there. Rebekkah was flown to Florida so that they could be together. During the brief visit they became husband and wife. She returned to England, hoping to come back. They never got another chance to be with each other. But, a short time with someone who loves you is better than never having the chance. He left us with a smile in his heart.

Scott will be missed. Whenever the DMD community loses a member, it is a loss to all of us. Even if I don't know the one who died, I still grieve. We all share a kinship. Scott was a brother-in-arms in fighting against the constant foe of DMD. He fought the good fight for as long as he was able. I will continue to honor Scott, and all the others who have fallen, as long as I live. Farewell Scott. It was an honor to have known you.

Tuesday, July 15, 2014

My Birthday

On July 9, I turned forty-six. To most people, this is just another birthday. There is nothing special about it. But, as a person with Duchenne muscular dystrophy, every birthday is special. Every birthday that I have is a celebration of life. I am reminded at every birthday how lucky I am to be alive. Every birthday gives me a chance to flip the bird at DMD. I have defied it yet again. Every birthday reminds me to not take life for granted, and to treat every day as if it is my last. When I least expect it, it could all be over. In the face of this uncertainty, I embrace the gift of life.

Monday, June 23, 2014

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.

Friday, May 02, 2014

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.

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