Disability Advocacy

For far too long I have sat on the sidelines and watched while others have fought for the rights and interests of people with disabilities. I have decided to get off the sidelines and enter the fight to protect the rights and interests of people with disabilities. It is time for me to make a contribution to society and to stop doing nothing.

I am getting involved in disability advocacy through Access to Independence (A2I), an independent living center (ILC) in San Diego and with the help of Rachel Vega, an organizer. Through her I am learning how to be an advocate. I am also getting involved in advocating and educating about assistive technology (AT). I got in to this also through A2I and the help of Maria White, the AT specialist there.

My involvement in disability advocacy will give me a purpose in life and something to be involved with. It also has the potential to help many people, not just myself.

Merry Christmas!

Hope everyone has a very merry Christmas. This is always such a wonderful time of the year. The spirit of peace, goodwill, and giving to others is in the air. If only this spirit could last all the year. I get great pleasure in the giving to others. This year, as I have been doing for the last few years, I donated to Toys for Tots. I like the the thought that the toys I donate will brighten the Christmas for children who may otherwise receive nothing. It is even more important in these hard economic times when the need is greatest.

The spirit of this season encouraged me to commit a random act of kindness. I cleaned out my closet to get rid of clothes I no longer wanted or needed. I had a nice, warm jacket and some shirts, and decided to give them to a needy person. Whenever I went out in my van, I looked out for a homeless person to give them to. I could not seem to find anyone. But, yesterday, Ernie (my nurse), and I pulled into a parking lot along the San Diego waterfront to wait till my brother's plane arrived at Lindbergh Field. As we pulled in to the parking lot we spotted a homeless man walking along the waterfront. He was all alone and was talking to himself. I had found, my recipient of my random act of kindness. Ernie, and I approached him and asked if he needed a jacket and some shirts. He said yes and we handed over the clothes. He was so grateful and couldn't stop thanking me. My small gesture was a big deal for him.

He was down and out with no permanent place to live, and living out of motels. We listened politely to his paranoid story that the government was after him because he was an assassin. Even though his story was crazy, we stayed a little while longer to listen to him. We took away some off his loneliness for a brief time It felt good for him to have someone to talk to. I felt great the rest of the day knowing that I had helped a person in need. It may have been a small gesture, but it brightened some one's day. That made it well worth it.

I would encourage all of you to commit a random of kindness, no matter how small a gesture it may be. It is a great feeling and is part of the spirit of giving of this season. But, all through the year this spirit should be encouraged.

Josh Winheld 1978-2009

Today I received some sad news. Josh Winheld, who I got acquainted with on the internet group, DMD Pioneers, lost his battle with Duchenne Muscular Dystrophy today. I didn't know Josh as well as others did, and chatted with him on the internet only a few times, but I did read many of his postings to the group. He was kind, upbeat, and didn't let his disability get in the way of enjoying life. Any time a DMDer is lost, it is a loss to all of us with DMD, and is a reminder of our own mortality. The wish for a cure for DMD also becomes even stronger. It is a reminder to all, not just those with DMD, to love and enjoy life while you can, for you never know when your time is up. Josh is now at peace. My thoughts are with his friends and family. He will be missed by all, and has left a positive impact on all who knew, or were acquainted with him.

Thanksgiving

I hope all my readers in the United States had a great Thanksgiving. My Thanksgiving was spent at home with the family. The best part of this holiday is spending time with my family. It is also a time for reflection on things that I am thankful for. Here are the things that I am thankful for: my supportive family, my good friends (online and off), my in-home nursing care (most especially Ernie who has taken care of me for fifteen years), that I live at home and not in a nursing home, the adaptive equipment that allows me to use the computer, my accesible van which allows me to get out in the world, my power wheelchair which allows me to get around, and my ventilator which has extended my life.

Here is an amusing sign, which I found on the blog, A Stellar Life.

Miramar Airshow

On Friday, October 2, I attended the annual air show at MCAS (Marine Corps Air Station) Miramar for the third year in a row. It was just as thrilling this time as the other times. There is always something exciting about the roar of jets overhead. As usual, the show was full of amazing aerial acrobatics. I didn't see every performance, but the ones I did see were well worth it. Among the performances I saw were, The Oracle Challenger, The Red Bull MIG jet, a legacy flight of an F-16 fighter jet and the P-51 Mustang fighter plane from World War II, The Patriot Team whose jets trail red, white, and blue smoke as they perform their stunts, a helicopter that performed some amazing stunts, such as loops (I had never seen a helicopter able to do loops, and have never seen one able to go upside down), and the AV-8B Harrier jet. It is always a sight to see a jet fighter take off and land vertically. But, the headliners of the show are the Navy Blue Angels. They put on another spectacular show. The excitement builds as the Blue Angels start up their engines and then start their slow taxi in pairs past the viewing stands and then they take to the skies with a roar. As usual, their performance was a spectacular demonstration of great skill and precision, The planes fly so close together at times that it appears that they might crash into each other or touch wingtips. It is an awe-inspiring sight to see the Blue Angels. I look forward to seeng them next year.

Dave Matthews Band

On Saturday, September 12, I saw Dave Matthews Band in concert at Cricket Wireless Amphitheater in Chula Vista. I have been a big fan for years, but this was my first time to see them live in concert. My seats were very good. They gave me an unobstructed view of the stage. It is great that they accomodate their wheelchair-using patrons very well.

The opening act was Switchfoot, a band out of San Diego. I had heard of them before, but had never heard any of their songs. They turned out to be a pretty good band. They performed a lively set which was well worth watching. During the opening act, the seats were sparsely filled. A lot of people were more interested in the main act. After Switchfoot left the stage, the seats started to fill up with eager fans. As we waited for the show to start, a large white sheet was hung from the light rigging. It hung down in front of the stage. Once everything was set up, the lights went out, and an incessant roar of cheering fans filled the air. The lights came on and the band members took the stage. As the band members took the stage, their distorted silhouettes were visible behind the sheet like shadow puppets. They started to play the opening notes of Funny the Way It Is, and with the first drum beat the sheet ripped away. The crowd went wild. After that they played, Spaceman, Don't Drink the Water, Proudest Monkey, Satellite, Shake Me Like a Monkey, Lying In the Hands of God, Seven, Crash Into Me, You Might Die Trying, Why I Am, Lie In Our Graves, Squirm, Alligator Pie, You and Me, Jimi Thing. They left the stage, and then came back for a three song encore of My Baby Blue, Grey Street, Time Bomb. They played almost all the songs off their new album, Big Whiskey and the GrooGrux King, but they also played a good number of songs from their other albums. They played one great song after another. The two and a half hours just zipped by.

The performance was energetic and upbeat from start to finish. Dave and his bandmates enjoyed performing for the fans, who enjoyed the performance as well. They are a band that loves to play together. They complement each other well. Dave Matthews unique vocals and acoustic guitair along with the awesome violin playing of Boyd Tinsley, powerful drumming of Carter Beauford, and the rhythmic bass playing of Stefan Lessard makes for a great sound. They were joined by a fine group of touring musicians: Tim Reynolds on electric guitar, Rashawn Ross on trumpet, and Jeff Coffin on Sax. Jeff was filling in for LeRoi Moore, a founding member of DMB, who died last year. It is a shame that I never got to see him perform with the band. But, Jeff did a fantastic job filling in. At one point he played an alto and a tenor sax at the same time. They did some great jams and Boyd had some great violin solos. The band is great on their albums, but they are even better live. It was a memorable concert and they are a band I would like to see again.

Quotes

"One good thing about music, when it hits you, you feel no pain. "

Bob Marley

Alan Adams 1966-2009

This morning started off on a sad note. I received news that my friend, Alan Adams died last Wednesday in the hospital. Alan, like me, had Duchenne Muscular Dystrophy, a disease that has taken away so many people. This news rudely slapped me in the face with my own mortality, and has increased my wish for a cure. It also shows that you must take every day as it comes and to enjoy life; because you never know when that bell will toll for you.

I met Alan, five years ago, on the internet in the group DMD Pioneers. We would chat on Yahoo Messenger, or talk via the internet. Sometimes we would play on-line games as we talked. Often, we invited a fellow DMDer, Jeff Petrie to join us in the fun. I never met Alan in person, since he lived in Pennsylvania. He was humble, kind, good-natured, and had a love of life. I always enjoyed talking with him, and he was glad to talk to me. My thoughts go out to his family on this day that he was laid to rest. It was great to have known you, my friend. You will be missed.

41st Birthday Party

Last Saturday, July 11 was my forty-first birthday party. This year, I decided to keep it small, and simple. I just invited close friends and immediate family. It was a low-keyed affair. We hung out around the pool at my parent's and my house, socializing and having a good time. My best friend Alex painted a portrait of me with oil paints in twenty minutes (check out his blog post about the portrait). It provided an interesting diversion as my guests watched the portrait take shape. The final product was very good.

As I sat there visiting with my friends and enjoying the day, I felt blessed to have the friends and family that I have. Everyone truly enjoyed spending the afternoon in celebration of another birthday. Sometimes the simplest celebrations are the most enjoyable. My fortieth birthday party was so wonderful that there was no way it could be surpassed. Everyone still has fond memories of that day. In homage to last year's celebration, the cake was decorated with butterflies (a reference to the release of monarch butterflies at last year's celebration), and said Happy 1st Anniversary of Your 40th Birthday. Towards the end of the party, my niece, Dallas sang a song for me from the swimming pool (an interesting choice of venue). That was very thoughtful of her and a special touch to end off an enjoyable afternoon. A nice day spent with my family and friends is the best present I can ever receive. Everybody left the party in good spirits. A sign of another wonderful party.