Monday, August 16, 2021

I Believe

Here are ten things I believe. This will be a regular feature on this blog.

I believe...
That all life is interconnected
That we are a part of nature, not separate from it.
That a truly civilized society treats humans and animals humanely
That not all traditions are worth saving
That history should be taught with the warts and all
That unpleasant history should be confronted, not avoided
That there is too little forgiveness in the world
That we don't always learn from the past
That LGBT people are born that way
That it is not important who someone is, but whether they are a good person or not.

Saturday, July 10, 2021

My Birthday

On Friday, July 9, I turned fifty-three. Where have the years gone? I was not expected to still be around at this age, so this is a victory against Duchenne muscular dystrophy. I am thankful to have been given extra life, even with all the challenges, frustrations, and disappointments with having DMD. No life is without some suffering. It's hard to appreciate life without adversity.

Saturday, June 05, 2021

I'm back!

I last posted on my blog four years ago. Back then I felt that I needed a break from blogging for maybe six months to get my writing mojo back. The break went longer than a year, and my motivation to return to blogging evaporated. I decided to stop the blog for good, But, then I realized I still have much to say, and decided to bring back my blog. 

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.