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.

 



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.

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.

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.