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.

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.

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!

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.