Torrey Pines High School Class of 1987 20 Year Reunion

Last Saturday night I attended my 20 year high school reunion. My nurse, Ernie accompanied me. It is hard to believe that 20 years have elapsed since the graduation ceremony on the quad at Torrey Pines High School (Del Mar, California). I remember driving along the procession in my power wheelchair and my mortar board hat kept falling off. My classmate, Evan Himfar, who was following behind me in the procession kept retrieving my hat and putting it back on my head. I never could get hats to stay on my head. But, the highlight of the ceremony was when I drove on stage to accept my diploma, I received a standing ovation from my class. To this day, I cherish that moment.

In some ways it feels that graduation was only yesterday, yet other times it feels like ages ago. Time flies and I am left with fond and not so fond memories. High school was full of a mix of both. Yet if we didn't have bad memories, the fond memories would not be so sweet. I am glad to have been a part of the class of '87. For the most part, it was, and still is a fine group of people.

It was interesting see how everybody has changed in the last 20 years. Some people have changed more than others. Some people were hard to recognize, yet others were unmistakable after all these years. No one had trouble recognizing me. It is hard not to miss me since I was the only student in my class in a wheelchair.

The Reunion was held at the Marriot Hotel Del Mar. Over 2oo people showed up, a far better turnout than the 10 year reunion. People were more at ease at this reunion. After10 years people are still out to prove themselves. After 20 years this pressure is less evident. I felt a positive vibe in that ballroom. People were mingling all over the room. Very few seemed to ever sit down. It was great to hear the joyful sounds of laughter and of delight of reunion with classmates not seen for many years. There was so much chatter that it was hard to hear. Even the music was drowned out. That just proves that there was a good time. Everybody was so busy talking that few people danced. Hearing the music of the times brought back many memories.


I really enjoyed visiting with people I haven't seen in years, and people I didn't know. I felt that they were glad to see me. Many people were probably surprised that I am still alive and kicking. There were times when I wondered if I would see this day. It was even better that I have my voice back so I was able to talk.

8 Random Facts About Me

Today I was tagged by Scott Sands, an aquaintance of mine and fellow blogger (Scott Sands Alive) with Duchenne Muscular Dystropy, to play a game called Eight Random Facts. Here are the rules.



A. You must post these rules prior to giving your facts.


B. You then must post eight random facts about yourself on your blog.


C. At the end of the post, you must tag eight more bloggers.


D. Then you must visit each blog and leave a comment that they’ve been tagged.

Unfortunatly, Scott already tagged the bloggers I know. So I will just list my random facts. But, if anyone reading this would like to share 8 random facts about themselves, just email them to me (johnrsf@pacbell.net )

Here are my eight random facts about me:

In 1982 on a school trip to Washington, D.C., I happened to meet President Reagan during a tour of the White House.

I am a big fan of the band Los Lobos and saw them in concert several years ago.

In 1988 b.v.(before the vent) during a trip to Venezuela I went to the rainforest in Canaima. I don't think they ever had someone in a wheelchair there.

In 1984, I attended the opening ceremonies of the summer Olympics in Los Angeles.

I am a baseball fan. My team is the San Diego Padres.

I am not a big fan of rap music.

Jeopardy! is my favorite television show. I qualified to be a contestant, but they couldn't figure out how I would buzz in to answer the questions.

I am a history buff.

My Birthday

Today I reached another milestone in my life--I turned 39. For most people this is not a particularly big deal, but for those who have Duchenne Muscular Dystrophy it is a significant event. Every birthday I look upon as a personal victory against my disease. Last year, with my health problems and two month hospital stay, there were times I thought I would never see this day. But, the love and support of my family and friends and self-determination kept me going and enabled me to cross my bridge over troubled waters.


I had a big birthday bash on Saturday, July 7. I have had a party almost every year for the last 9 years. There is nothing I like more than spending time with family and friends. So, I use my birthday as an excuse to get everybody together. To me that is the ideal way to celebrate my birthday. Gifts are no longer important to me; to me the gift is being with friends and family.

The party was held on the nice, big lawn at the house of my sister, Bibbi and her husband, Rick. It was decorated in a western motif. There were hay bales, wagon wheels, and cow skulls scattered around the yard. There were cowboy hats for those who didn't bring one. The caterers had quite a spread of western style foods. I couldn't eat any of it, but I am glad the guests enjoyed it. I had my non western tube feeding. They don't have barbeque tube feeding. It was great to see the adults mingling and the children romping around. Everybody seemed to be having a genuine good time. The phrase eat, drink, and be merry truly applied.

The highlight of the day was the performance of the magician who performed some amazing tricks.He started his act swallowing fire (ouch!) One trick involved making a bird dissappear, then he took out a lemon, peeled it and inside was an egg. When he cracked the egg open, the bird flew out. In another trick he had a milk carton and poured out all kinds of drinks such as milk, chocolate milk, root beer, apple juice. The children really loved that trick. When he was done he ripped apart the carton to show that it was a regular milk carton with no hidden compartments. The most amazing was the finale when he levitated his daughter with a single broomstick to hold her up. I could not figure out how he did it. I always enjoy a good magic show, especially when I can't figure out how the tricks were done.

After the magic show, my 8 year old niece, Dallas Rose got up on stage and sang a song. It was very touching; I don't think there was a dry eye there, including my own. Dallas also had the idea to have a lemonade stand with the procedes going to the Muscular Dystrophy Association. She wants to give the money to MDA during the Labor Day telethon in San Diego. What a thoughtful little girl! After that my sister had activities for the kids such as sack races and egg toss. It was great seeing the children enjoying themselves.

I returned home from my party feeling elated and blessed to have such a wonderful family and group of friends. I couldn't have asked for a better way to celebrate my birthday. Next year will be an even bigger milestone when I reach 40. I plan on being there.

July 4

Today I attended the annual July 4 parade in my hometown of Rancho Santa Fe. It is a nice community event and has a quaint, small town feel.

The parade always starts with a local singing the Star-spangled Banner; this year it was sung by a student from the school. It wasn't a perfect rendition, but that's what makes it quaint. At least she didn't resort to the horrid vocal gymnastics so many singers use to mangle our national anthem. It always brings a lump to my throat whenever I hear it. Next, the fire engines, with sirens blaring and lights flashing, led off the procession. They were followed by a Marine Corps color guard from Camp Pendleton who marched by with the stars and stripes held proudly aloft. After that was the parade of vintage cars, floats pulled by tractors, decorated golf carts, people on horses, and children riding bicyles decked out with red, white, and blue streamers,balloons and flags.

After the parade there was a picnic and concert by a local orchestra on the village green. It was a nice, low-keyed way to spend the afternoon.

I couldn't help but reflect upon the over 3500 men and women of our armed forces who have died,and the thousands of others who have been maimed or injured in Iraq, in an exercise in futility. I am tired of hearing the mantra that they are fighting and dying for our freedoms. This is just more empty rhetoric to justify a tragic waste of lives and treasure. It is a sad state of affairs for this nation. How many more lives will be lost before this national nightmare is over?

Hands Free Mouse

I recently purchased a hands free alternative to the mouse. Due to my Muscular Dystrophy, I was starting to lose strength in my hands. It got to the point that it was getting more difficult to move the mouse and click the buttons. I constantly needed help to put my hand on my mouse, since it kept slipping off. I was losing the strength to keep my hand on my mouse. Using the computer started to become a frustrating and tiring experience for me. I started to feel discouraged.

But all this would change when I discovered the Naturalpoint SmartNav 3:AT hands free mouse. It uses an infra-red camera mounted on top of my monitor to track my head movement. A reflective dot stuck to the bridge of my glasses reflects the light back to the camera which tells the computer to move the pointer. To click, it uses a feature called dwell clicking in which I hover over the item I want to click for a few seconds and it clicks. To type I use an on-screen keyboard. This device has made the computer easier and more enjoyable to use.

Lianne Harding 1963-2007

Today I attended a memorial for a good friend. Lianne Harding was a regular at the Muscular Dystrophy adult support group that I attend quite regularly. Her form of MD,took quite a toll on her body. She had hearing loss, a pacemaker to assist her weakened heart, couldn't walk without difficulty , and had a whisper of a voice.Yet, she was able to keep on going and enjoying her life. She may have been frail in body, yet she was strong in spirit. Her concern for others was wonderful as well as her kind heart. She was concerned with how I was doing, especially when I was so seriously ill last year. Her kind e-mails always made my day and brought smiles to my face. Iwas inspired by her. It was privelege to have known her and she will be missed.

Her husband of 17 years, Bill truly loved her and strove to bring happiness and enjoyment to her life. He stood steadfastly by his wife's side. He always looked out for her. When he was on active duty in the Navy, he always made sure Lianne would be well-looked after when he was out on deployment. He should be commended for the dedication to his wife. Many men might find it hard to deal with a wife's progressive disability, but not Bill. He never gave up on Lianne.

I am Back

On May 8 of last year, I was hospitalized with double-pneumonia and fluid around my lungs. I had drainage tubes inserted in both sides of my torso to drain the fluid around my lungs. But, that was not all. A fistula, or hole, was discovered in my trachea. This allowed fluid to leak into my lungs from my esophagus, which caused the pneumonia and the infection that caused the fluid around my lungs. My pulmonologist, Dr. Eiseman, was unsure if the fistula could be repaired. I thought I was going to die. Luckily, Scripp's Memorial Hospital in Encinitas (in California north of San Diego) has a very skilled ear, nose, and throat surgeon on staff. Dr. Ling knew how to go about fixing the fistula.

The surgery involved removing some muscle tissue from my neck and using it to seal the fistula. It was a success. I was put in to a drug-induced coma for three weeks so as not to undo the surgery. On July 3 I returned home. Since then my recovery has been slow and frustrating. I have had a few setbacks with my trach. Scar tissue blocked my trach quite a few times; twice I stopped breathing and blacked out. Luckily, my mom knows how to use the ambu bag! The paramedics were called both times and I was rushed to the hospital. I have been hospitalized twice and been to the ER numerous times since returning home. I've become a regular at Scripps Memorial Hospital in Encinitas. They should name a wing after me. I lost the ability to swallow; I am fed formula through the peg in my stomach. Also, I am not able to talk most of the time. But, I am hopeful to regain my voice. I am determined not to lose my ability to speak. Although I have gone through many trials and tribulations over the last 10 months, I feel that my life is slowly improving. I am glad to have cheated death once again.

On-line Monopoly

Today I played Monopoly with a couple of friends--Alan and Jeff--over the internet. It is a lot of fun, especially since we converse during the game using the Skype internet phone. There are many laughs, and friendly competition--with a few barbs of the joking kind thrown in.

The internet has really opened up the world for people with disabilities. It allows me to meet new people all over the world and to communicate with them. If not for the internet, I would not have found the DMD Pioneers internet group, where I have found much support, and given support to others living with Duchenne Muscular Dystrophy and their loved ones--parents, wives, girlfriends, friends, siblings. We are a group that does not give up, and goes boldly forward like a group of pioneers. It is great to be able to talk to people with similar issues, complaints, concerns, and experiences as me. I no longer feel alone in this world. I am part of an international community. There are members from all over the U.S. (Alan is from Pennsylvania, Jeff is from Kansas), Canada, Europe, Australia, and Asia. This is all thanks to Jeff McAllister(1977-2005)--the founder, and a moderator. We lost him last year to heart failure at the age of 28. He is still missed. But, others have taken over the mantle to keep the group alive in Jeff McAllister's memory.

I also am part of the the Vent Support Network, an internet group founded by Mark Boatman of North Dakota for all ventilator users and their loved ones. It is yet another great source of support and information. Happily, Mark is still with us at the age of 30. Mark has been forced to live in a nursing home in Jamestown, North Dakota for the last three years, but the good news is that he will be gaining his freedom next month after much persistance. He is moving to Missoula, Montana where he will receive in-home nursing care and not be confined to an institution. I celebrate his coming independence.

Joe Malone 1969-2006

It has been about two months since my good friend, Joe Malone died. Though, we were only friends for less than a year, his death hit me hard. Joe, was 36, and like me, had Duchenne Muscular Dystrophy, was trached, and used a ventilator to help him breathe. He was a free-thinker, a non-conformist, and had an open mind about many things, much like me. I was able to have intelligent conversations with him on many subjects. We both shared a constant drive to learn. He was also a lover of animals and nature, as I am. I looked forward to our continuing friendship.

This all ended very suddenly on a January night in his apartment in the Point Loma area of San Diego. His death had nothing to do with Duchenne Muscular Dystrophy, but human error. As he backed up his power wheelchair, on his way to use his computer, he hit something which disconnected his breathing tubes from his vent on the back of his chair. He could only be off his vent for a minute or so. The nurse on duty at the time reconnected the main tube to the vent, but one of the smaller tubes was still disconnected, and she failed to find it. She called the nursing agency and they called 911. His roommates tried to get air to his lungs, but were unsucessfull. When the paramedics arrived, they were unable to revive him. He died the next morning at the UCSD Medical Center in San Diego.

I found out about his death when I logged on to Yahoo!Instant Messenger to chat with him, which we did quite often. The night before, I was unable to reach him; because he was in distress at the time. I typed a greeting to him, and was shocked to get a response from one of his roommates. She informed me that Joe had died that morning. I went cold and I had a sinking feeling in my gut. Seeing the words, "Joe Died" hit me like a ton of bricks. I was angry that my good friend had been snatched away, but then I realized this is the reality of DMD. But when I found out that human error, and not DMD killed him, the loss was even harder to deal with. But, for one little tube, he would still be here today. It was a tragic accident for Joe, his family, his roommates, and the nurse whose inability to reconnect his vent tubing led to his death.

Joe lived for today and made the most of his life. A favorite quote of Joe's was by Joan Baez who said " You don't get to choose how you're going to die. Or when. You can only decide how you're going to live. Now."

About Me

I am a person with a disability: Duchenne Muscular Dystrophy. It didn't come upon me suddenly--I was born with it. I was not expected to live past the age of fifteen, but now at age 37 I am still ticking. At age eleven I ended up in a wheelchair; my legs had become so weak that I was no longer able to walk or stand. When I was 26 I was trached and hooked to a ventilator. The ventilator assists my breathing. Without it, I would not be here today. Modern technology has given me, and others like me, a new lease on life. I am thankful to live in a country that has made this possible. Every birthday I celebrate is a personal victory over my disease.

It may seem to some people that I don't have much quality of life. I beg to differ. Although I am unable to walk, have limited use of my hands, and need a vent to breathe, I can describe my life as relatively content. There is much for me to live for: my family, good friends, spending time with my niece and nephews. I try not to dwell on what I can't do, but focus instead on what I can do. I try not to dwell on the past or the future, but live in the present. As Eleanor Roosevelt said: " Yesterday is history. Tomorrow is mystery. Today is a gift."