Cody Namesnik 1978-2008

On Saturday, July 19th, an aquaintance of mine with Duchenne Muscular Dystrophy passed away after losing his battle with pneumonia. Cody belonged to the internet group, DMD Pioneers, which I too belong to. I chatted with him from time to time on Yahoo! Instant Messenger. He was always kind and good-natured and had a sense of humor. He also had a love of animals. I may not have known him as well as others, but I am deeply saddened by his loss. Anytime I hear of the loss of a fellow DMDer, it hits me personally. They are all brothers in the common struggle against this disease. It was nice knowing you, brother!

Chris Isaak

On the night of Tuesday, July 15, I saw one of my favorite musicians, Chris Isaak, in concert under the stars at the Valley View Casino in Valley Center. The stage was set up in a fenced off parking lot. My seats were in the front row, stage left, probably about twelve feet from the stage, with a mostly unobstructed view of the stage. A post on the side slightly obstructed the keyboard player, but most of the performance was in plain view. It was a much more intimate setting than most of the concerts I have been to. It was so nice to be so close to the action on stage and in the audience.


Chris Isaak and his band entered the stage and started off with the lively, Lonely With a Broken Heart, and the mellow Somebody's Crying. Then he walked down off the stage and strolled through the audience while singing Elvis Presely's song, Love Me Tender. He drove the women in the audience wild. In fact, during most of the show, a whole group of women were gathered at the front of the stage. Women were screaming, cheering, and calling out throughout the show. I should know, I had one of them right behind me. After that number, he performed, I Want Your Love; a new song, We Let Her Down, off his upcoming album; Speak of the Devil, replete with smoke on the stage and red lights. Then he did another new song, Mr. Lonely Man, then one of my favorite songs, Wicked Game. After that was, The Best I Ever Had, Worked It Out Wrong, two new songs, Blues Stay Away from Me, and All the Way; Two Hearts; another new one, Take My Heart; a cover of the country song by Ned Miller, Dark Moon; I'll Go Crazy; Don't Leave Me On My Own; Roy Orbison's, Only the Lonely; and Baby Did a Bad, Bad Thing. He also did a cover of Cheap Trick's I Want'You To Want Me.


I thought that was the end of show, but he and his band came back on stage. They started by playing the instrumental surf rock number, Super Magic 2000, and Chris Isaak came on stage in a mirrored suit and played the country sounding American Boy, then San Francisco Days, Notice the Ring (with a great conga solo by Raphael P.), and ended with Forever Blue.

Chris Isaak's variety of rock, rockabilly, country, blues and ballads makes for a good concert. His singing and guitar playing is backed up by his great band: Roly Salley, on bass; Scott Plunkett, on Piano; Hershel Yatovitz, on guitar; and Kenney Dale Johnson on drums. They are very comfortable performing together which was shown in their ribbing each other and joking around during the show. Chris also interacted well with the audience, which added to the intimate setting. There was also a great energy with the audience as they danced and swayed to the music. It was an enjoyable night and a concert I won't forget.

My 40th Birthday Party

Last Saturday (July 12), my long-anticipated fortieth birthday party took place at my sister, Bibbi, and brother-in-law, Rick's home. I had a small family get-together on my actual birthday last Wednesday, July 9, but this was the big celebration. The theme of this year's party was Spanish flamenco. I thought it would add a festive air to this milestone celebration. The tables were decorated with black bolero hats, Spanish flags, and castanets. A bar was set up to serve sangria, and other drinks. There was a table with Spanish food, such as gazpacho. In the background, flamenco music played from a cd as guests arrived and mingled. The weather was perfect, with a nice breeze keeping it pleasant. It was so nice to see so many friends and family members in attendance. Celebrating my birthday with family and friends is the best gift that I could have. There must have been close to eighty people there; all talking, laughing, and having a great time. The children were all running around the yard and enjoying themselves as well. There was a positive vibe in the air.

Among the many guests were two of my teachers. One was my teacher from third and sixth grades at Rancho Santa Fe School, Mrs. Jaffari, and my biology teacher from Torrey Pines High School, Mrs. Yayanos (after all these years, I still find it hard to call my teachers by their first names). I was surprised to see family friends Bob and Charlene,who drove down from Sacramento. They owned the condo next to us in San Carlos, Mexico where we used to go every February from 1980 to 1987. They were always such fun-loving people. Three of my best friends were there: Alex, who I have known since third grade, came down from Los Angeles; Marisa, who I met eighteen years ago, while we were students at The University of San Diego, drove down from Long Beach; and Peter, who I have known since seventh grade, came down from Palo Alto. Also, a few of my friends from my adult Muscular Dystrophy support group were there: Phyllis and her daughter Kimberly; and Dean. Also the patient services coordinator of The Muscular Dystrophy Association (MDA), Danielle was there.

After everybody had a chance to mingle and were in a festive mood, they gathered around the dance floor for the flamenco show. The troupe of performers consisted of a guitarist, a female singer, and two dancers: a man and a woman. They put on an authentic flamenco show with traditional songs and dance that was full of passion, energy, and emotion.The performers were not just going through the motions; they gave it their all and truly enjoyed what they were doing. It showed on their faces. The rapid, and powerful strumming of the acoustic guitar was accented by the strong, passion-filled voice of the singer. The dancers showed the same amount of passion in their dancing. Their performance was full of the emotional sweeping of the arms, the rhythmic stomping of feet, clicking castanets, and fine hand and foot movements. Towards the end of the show the dancers brought audience members on the dance floor to dance with them. The first picked was my friend Marisa, then my sister, my father, then my friend Lance's girlfriend, Marisol. They all had a good time on the floor and everyone enjoyed watching as well. To end the show, the performers all sang Happy Birthday to me in Spanish (Feliz Cumpleanos).

After the show, my niece, Dallas got on stage and sang a song for me. That was very touching. I was also presented with a replica of a brick that will be placed at the entrance at Disneyland with my name and birthdate on it. I'd better make sure nobody walks, spits, or drops chewing gum on it. Some of the children started an impromptu hula hoop contest. A pinata in the form of a bull (not really a Spanish tradition, but a fun thing for the kids) was hung from the tree branch for the children to attack. They made quick work of it with their bats by decapitating it and spilling the candy. After a Spanish feast, people were invited to talk about me. My sister told the story of the time I was in Amsterdam with her and my brother, Bill and I was exposed to second hand smoke (not from cigarettes). My memory is kind of hazy about that night. My dad reminded me that I was almost half his age. Listening to these speeches and visiting with the guests made me realize what a supportive group of friends and family I have. I finally got my courage up, and gave my speech. After my speech, everyone gathered around me and sang Happy Birthday and after that released monarch butterflies around me. It was a beautiful sight with all the bright orange butterflies fluttering in the air. A couple of them landed on me. That was a beautiful end to a wonderful party. It was my best birthday party by far.

The Big 4-0

Today I reached a big milestone in my life: I turned forty years old (or young, depending on how you look at it). To me this is a victory of sorts. When I was diagnosed with Duchenne Muscular Dystrophy at the age of five, the doctors told my parents that I would probably not make it past the age of fifteen. I proved all the doctors wrong. Despite my disease, I am still going strong. I'd like to think that some of it has to do with my attitude. But, a major factor in my longevity and well-being is the fact that modern technology has made it possible to extend the quantity of my life as well as improving the quality of my life. My ventilator, suction machine, and feeding tube, make my life possible. For that, I am thankful. It was my luck to be born in a country where access to such life-saving technology is possible.

Reflecting on the past forty years, I have regrets (who doesn't?), but I try not to dwell on them for long. I would drive myself crazy if I played the what if ? game too much. What is past, is past, so I just try to move on. My life has been a rollercoaster ride of ups and downs, sadness, elation, good times and bad. But, overall, the good times have predominated. My disability hasn't held me back from enjoying life. If I, or my family had allowed my disability to be an obstacle, I wouldn't have seen so much of the world, graduated from college, or gone on to receive a Master's degree in history. I have lived with hope for a cure for Duchenne Muscular Dystrophy, but have come to accept the fact that there may not be one in my lifetime. If a cure does occur I would be the first in line, but if not, I can accept the fact. I have lived with my disability for so long that I have come to accept this state of affairs; I have become comfortable in my own skin. Over the past forty years, many people have come in and out of my life; family members, friends, acquaintances. Most of these relationships have enriched my life in one way or another. My family and friends have been instrumental as well in helping me get through times of trouble and helped to give me the will to go on, when things appeared hopeless. They give me a lot to live for.

In my forty years, I have come to the realization that it is important to try to take one day at a time, not to dwell too much on the past, and not to focus too much on the future. Life is to be enjoyed. Stop and smell the roses. Appreciate the simple things in life, for they can be the most enjoyable. I close with the quote that I have adopted to define my life--"There is no cure for birth and death save to enjoy the interval." (George Santayana (1863-1952)).

4th of July

Today I attended the annual 4th of July parade in my town of Rancho Santa Fe. It is always a nice way to celebrate the holiday. It seemed like the whole community turned out to enjoy the festivities. People lined the sidewalks on boh sides of the street to watch the procession go by. It began with the singing of the national anthem and then the procession began with the fire engines, the Marine Corps color guard, and then the parade of classic cars, tractors, horses, golf carts, and the traditional procession of children on bicycles. After the parade, the people gathered on the village green for food and to listen to the music from a local orchestra. It may not be a grand festival, but it is a down-to-earth, small town happening. This year my niece, Dallas, and my nephews, Sterling and Stetson took part in the parade. Sterling was picked to ride up front in the lead fire engine, while Dallas and Stetson were on the Community Center float with other children. Now that my sister, her husband and kids will be living in the community it was nice to see the kids being a part of this tradition.

On this day my thoughts go out to our men and women in uniform who are serving over in Iraq and Afghanistan and those who have lost their lives over there. I just wonder how many more Independence Days will find our troops over there, and how many more of their lives will be lost.

14 Year Anniversary

This month marks 14 years since I was trached and vented. But, more importantly, it was when I was given a new lease on life. I was given the choice between life and death. If I got a trach, I would live, if not, I would have been taken off life-support and been gone. Without hesitation, I chose life. A wise choice. I knew I had big challenges ahead of me, but I still had more living to do and so much to live for.

Lucky

Lucky lounging around.

Medi-Cal Under Assault

Today I went with my nurse, Ernie to a protest rally at Lindbergh Park in San Diego to oppose Governor Schwarzenegger and the California State legislature's approval of a 10% cut in Medi-Cal (California's version of Medicaid) reimbursements to health care providers. These cuts are supposed to take effect on July 1. It is hoped that protest and petitions will stop these disastrous cuts. I was disappointed that the turn out was not larger for such an urgent issue. There were less than fifty people there. Most were home health care nurses, patients, and family members who will all be affected by these cuts. Some people gave impassioned speeches against the cuts. Two local news stations, KUSI and the Fox affiliate XETV showed up to cover the protest. At least it got some coverage. I just hope it's not too little, too late.


Home health care nurses who are paid by Medi-Cal will get a 10% pay cut (the agencies that hire the nurses are putting all the burden of the cuts on the nurses), and durable medical equipment and medical supply companies will get a 10% cut in reimbursements as well. It is hard to get nurses already; these cuts will make it even harder. Some people will lose their nurses to higher paying jobs. Also, some medical supply companies may no longer serve Medi-Cal recipients if these cuts take effect, and it may be harder to get some supplies and equipment.



I understand that California has serious budget problems and needs to make cuts, but these cuts to Medi-Cal are damaging. It is funny that everyone must sacrifice, except the Governor and the politicians. In fact, the state legislators were given pay raises. Why do they need raises in these tough economic times? I don't think they deserve it anyway. How about the state legislators take a 10% pay cut? or how about cutting their perks? They didn't exhaust all options in making the cuts. There must be pork barrel projects, or wasteful spending to be cut. Even going after Medi-Cal fraud would save money. I am furious at Governor Schwarzenegger and the state legislature. Medi-Cal always gets targeted for cuts which end up hurting people. I hope he and the legislature see the light and will reverse these cuts. My fingers are crossed.

The Police

Last night I went to see The Police at the Cricket Wireless Amphitheater (formally Coors Ampitheater) in Chula Vista. The handicapped parking is conveniently located near the front entrance so I didn't have far to go; my seats in the wheelchair section were very good as well: I had an unobstructed view of the stage. I always enjoy concerts under the stars, or in the case of last night, under the clouds. Unfortunately, it was unusually cold for this time of year.

The concert opened with Elvis Costello and the Imposters. He put on a good performance and performed many of his classics, such as Watching the Detectives, Every Day I Write the Book, (What's So Funny 'Bout) Peace, Love and Understanding. He also played some new songs that I was unfamiliar with. It brought back memories of the 1980's. The highlight of his performance was when Sting came out on stage with Elvis Costello to perform Allison. It was an unexpected bonus.

They started off the show with Bring on the Night, then went right into Message in a Bottle, Walking on the Moon, Demolition Man, Voices Inside My Head, When the World is Running Down, Don't Stand So Close to Me, Driven to Tears, Hole in My Life, Every Little Thing She Does is Magic, Wrapped Around Your Finger, De Do Do Do, De Da Da Da, Invisible Sun, Can't Stand Losing You, Roxanne, King Of Pain, So Lonely, Every Breath You Take, and ended with Next To You.

It has been about 25 years since they last toured and they are older--Sting is 56, Stewart Copeland is 55, and Andy Summers is 65. But, they could still deliver. The energetic drumming of Copeland, lively guitar playing of Summers, and rhythmic bass playing of Sting brought the old songs back to life. The songs sounded just as good. The audience got into the show with cheering, singing along to the songs, and swaying and dancing in place to the music. It was a nostalgic experience. They played most of the songs one would expect them to play. The 100 minute show zipped by. When they gave their final bows and the stage lights went out, I couldn't believe it had ended. I wish they could have played a little longer; there were still songs that I hoped they would play, such as, Synchronicity I, Synchronicity II, Spirits in the Material World, and Murder by Number. But, I can't complain. They put on a good show. I was glad I got to see this reunion. It may not happen again.

Indiana Jones and the Kingdom of the Crystal Skull

Today I went to see the movie, Indiana Jones and the Kingdom of the Crystal Skull. I was excited to see the return of Indiana Jones after all these years (I was dissappointed that they didn't continue the series after the third movie, The Last Crusade) , but I was unsure what to expect. It's been a long time since Indiana Jones last appeared on the screen and Harrison Ford is older now. The movie turned out to be a pretty good return to the screen. It had what one would expect from an Indiana Jones movie: edge-of-the-seat action, daring escapes, thrilling chases, improbable stunts, mysteries to be solved and discovered. Harrison Ford, though older, still delivered as the brave, wise-cracking, intelligent, bull whip cracking hero. Of course, there were some moments that were too campy and corny which the movie could have done without. The story was not as good as Raider's of the Lost Ark, and The Last Crusade, but it was not another Temple of Doom --the weaker of the three original movies. It was still entertaining, especially if you suspend disbelief and just enjoy the story. I was not greatly dissappointed, but I did expect a lot more from the movie.