Bookshare.org

Reading has been a lifelong passion of mine; my books have always been among my most prized possessions. So, when last year I lost the ability to turn the pages of books I felt a great sense of loss. I couldn't imagine not being able to read books anymore. I looked into electric page turners, but they turned out to very expensive and not so user friendly. But, then I thought of electronic books. I always preferred reading real books, so I wasn't too interested in electronic books. But, I realized I had to shed this bias and embrace the future if I was to enjoy reading again. I decided that e-books were the answer. While doing an internet search for e-books, I came across Bookshare.org. They make print books available on-line to individuals with visual impairments or people who are unable to hold or turn pages of a book due to a physical disability. This was the site for me. I signed up right away. To qualify, all I had to do was fax them a proof of disability signed by my doctor, stating that because of my disability I was unable to turn pages to read books. Once I was approved for membership, I payed a one time fee of $25 and a yearly fee of $50. I am allowed to download 100 books a month out of a growing collection of books which are scanned by members and volunteers and sometimes the owner of the copyright. It is legal because of an exemption in U.S. copyright law that allows the reproduction of publications into formats for the disabled. The books are available in two formats, DAISY and BRF. DAISY is a text format that can also read the text if needed; BRF is a Braille format. I downloaded a free reader called Victor Reader to read the books. It does a pretty good job, but I wish it was a little easier to use. But, it is better than nothing. I recommend Bookshare.org. It has allowed me to enjoy reading again.

More Pictures of Lucky

Here are some more pictures of Lucky. The bottom picture is Lucky with my mom's cat, Sassy. They are two partners in crime.

San Diego Zoo

Yesterday I went to the San Diego Zoo with my nurse, Ernie. It is another one of my favorite places to visit in San Diego. This is a great time of year to visit since the tourist season has ebbed. It is hard to maneuver a wheelchair through the throngs of people. We started by going through the Monkey Trails exhibit. The exhibit shows the flora and fauna of the tropical forests of Africa and Asia. The highlight is the monkeys, of coarse. They are among my favorite animals. I enjoy watching them climb, swing, and frolic. We also wandered through the numerous aviaries to see the variety of colorful, exotic birds. Hearing the cacaphony of bird songs, and sounds is so peaceful and soothing. Another exhibit I always enjoy visiting is the orangutan enclosure. They are so amusing to see. Their antics always draw a crowd. It's as if they want an audience. I never get tired of watching them. They make me laugh. But they are also so smart. One was using a twig to get food out of a replica ant hill. That's how the do it in the wild. It is sad to know that their habitat is being destroyed at an alarming rate. We may not see a future with orangutans living in the wild if this keeps up. We also saw the bonobos, sometimes called "pygmy chimpanzees." They are also fun to watch. One saw me and came right up to the plexiglas with a young one riding on it's back (See picture above) to check out this strange creature on the other side. I felt like I was the one on display. Lastly, I was able to see the Giant Pandas without the crowds. Usually I don't see them because the lines to view them are too long. They are beautiful animals which remind me of big, cuddly teddy bears. Of coarse their teeth and claws would seriously injure you. I look forward to seeing the new panda cub when he is old enough to be put on public display.

The zoo is another great place to get around in a wheelchair. They also have shuttle buses to transport disabled people around the zoo.

San Diego Wild Animal Park

Yesterday I went to the San Diego Wild Animal Park with my nurse, Ernie. It is one of my favorite places to go. I like just to drive around in my chair enjoying the scenery and looking at the animals. I have a yearly membership so I can go as much as I want. It is always enjoyable for me to see animals, especially when they have room to move around. They recently added a new attraction called Journey into Africa to replace the old railway. Like the railway, the new trams drive around the vast enclosures so that the animals can be seen roaming about like in Africa. But, what makes the tram so much better is that it is fully wheelchair accessible. They have a ramp that I drove up into the car, and tie-downs for the wheelchair. It was a very smooth ride and enjoyable. I wasn't able to go on the old railway and always wished they would make it accessible. It is great that they made it possible for wheelchair users to enjoy the ride like everybody else. Another great thing they introduced is a shuttle bus to transport disabled people to and from the far reaches of the park. Overall, the park is very accessible for wheelchairs. They get high marks in my book. I look forward to my next visit.

Jason Hinkle

I have a friend, Jason Hinkle, who is an aspiring documentary filmmaker. He has Friedrich's Ataxia, but this has not stopped him from pursuing his dreams or from enjoying life. He doesn't let his disability get him down. If disabled people are looking for a role model, Jason is it. He has made two short movies which can be viewed on his MySpace page at www.myspace.com/jrhink .

Lucky

Last Saturday, an unexpected bit of happiness entered my life. It was in the form of a cute kitten. I had wanted a pet and this kitten just arrived at the right time.

But, this is no ordinary story. It was serendipity. My sister and her kids drove to Oceanside to meet up with my father so they could drive together to go up to Newport Beach. My sister had to find a place to leave her car. The first place she tried to park she was told that she couldn't park there. After driving around, she finally found a spot on a street alongside the freeway. As my sister was transferring the kids and some things to my father's car she heard frantic meowing nearby. She dropped what she was doing and immediately looked around to find where the sound was coming from. She found the distressed kitten entangled in the vines on the wall dividing the freeway and the street. It appeared that someone had abandoned him. My sister untangled him and he purred as if thanking her for rescuing him. He turned out to be the sweetest little thing. My sister canvassed the local neighborhood, going door to door trying to possibly find the owners. She had no success. But, in one of the last houses she went to lived a kindly old women who had a couple of cats. She agreed to take in the kitten until the owners could be found. If not it would end up in an animal shelter.

The lady put up signs around the area, but there was no response. My sister decided to take the kitten so he wouldn't end up in an animal shelter. She couldn't really keep it, but she knew I wanted a pet. She sent her husband to pick up the kitten. It just so happens that I was visiting my sister when my brother-in-law arrived at the house with the kitten. I fell in love with the kitten right away. This was the pet I was hoping for. I agreed to take him home with me. It was an unexpected stroke of luck.

I decided to name the kitten Lucky because he was lucky to have been saved by my sister, and because it was lucky that he ended up as my pet. It is so enjoyable to watch him play. He sure is full of energy! It is also comforting to have the little guy sleeping on my bed. He is a friendly, good-natured kitten. He purrs when you look at him. He is content to be in a nice place with someone who truly wants him.

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?