Friday, December 12, 2008
Christmastime is upon us again. Where did the time go? This is one of my favorite times of the year. I like the spirit of giving, peace, and goodwill that is a hallmark of this season. As a child, Christmas was the highlight of the year, and I was always excited at what gifts I would get. But, as I got older, I realized that the giving of gifts was far more rewarding. Opening gifts is a short term pleasure: once they are opened, the excitement wears off. But, the pleasure of giving lasts much longer. I get much pleasure seeing the joy in the eyes of my niece and nephews when they open the gifts from me. This year again I donated toys to Toys for Tots, a wonderful charity. It gives me pleasure knowing that children, who may have gone without toys on Christmas, will get toys because of my donations. Besides the giving, this is also a time to get together with family and friends; it would not be the same without them. My thoughts go out to those who are alone this time of year and wish they can find some joy. Merry Christmas to all.
Thursday, November 27, 2008
- Good health
- Being alive
- Living at home and not in an institution
- My caregivers (especially Ernie, who has worked for me 14 years)
- My van
- My cat, Lucky
Sunday, November 02, 2008
Check out his blog, Ramblings in the Dark. There is also a great article about Matt and his trip in the Press-Telegram of Long Beach.
Saturday, November 01, 2008
On October 1st, our dear family friend, Michael Martin, passed away peacefully in his sleep. Just the way he wanted to go. Two days before, he and his wife, Sylvia were down visiting us. I am so glad I was able to see him this final time.
My parents befriended Michael and Sylvia forty-five years ago, and they have stayed close ever since. Their daughters Blaire and Stacy grew up with my sister, brother and I. We shared many important events in our lives, such as the Bat Mitzvas for Blaire and Stacy, weddings, birthdays, graduations. They were like family.
Michael was an example of someone who had realized the American dream. He came to The United States from London, England with little money. He married, had two daughters and established a successful private investigation firm in Los Angeles. It was a privilege to have known him. He had a quick and clever wit, always had interesting stories about his life and his many travels all over the world, and was a caring and warm person. He was also good-natured and lived life to the fullest. I can still hear his laugh. It was always a pleasure to visit with him. Whenever he visited he was always glad to see us as were we. I will miss those visits.
On October 5th I went up to Los Angeles with my family to bid farewell to Michael. The funeral service, though tinged with sadness, was a celebration of his life. The service started with an acquaintance of his singing the Louis Armstrong song, What a Wonderful World. There were touching and even amusing eulogies by Sylvia, daughters Blaire and Stacy, and some of his friends, such as my dad. During the eulogies there were plenty of tears, as well as plenty of laughs and smiles. The singer also sang a song based on a poem Michael wrote about his concern for the environment, called Does Anyone Care? It was a nice touch to bring his words alive in song. At the gravesite, after the internment everyone released a balloon at the same time. The balloons rose into the sunny sky in a unified mass and were carried away by a gentle breeze. It was a fitting farewell.My thoughts go out to Sylvia, Blaire and Stacy as they adjust to a life without Michael. He may be gone, but his memory lives on in all of us who knew him.
Sunday, October 12, 2008
Monday, September 29, 2008
That night when my dad transferred me from my wheelchair to my bed for the night--a routine occurrence-I ran into a problem. When my dad connected me to my bedside ventilator I couldn't breathe. A tube on my ventilator circuit was disconnected, and for some reason my dad panicked and couldn't reconnect it, or forgot where it went. The frustrating part was that I knew what the problem was and the solution, but I couldn't talk. It would have taken a second to reconnect the tube, and I would have been breathing. So, he turned me around with my head at the foot of my bed so I would be closer to the ventilator on my wheelchair, but it was too far away and the tube wouldn't reach. He didn't think of free wheeling my chair closer, or taking the ventilator off the chair and bringing it closer. When he was moving my head to the foot of the bed, he forgot to disconnect my bedside ventilator's tubing from my trach. The tubing pulled tight and the trach was yanked out. I found out later that my trach was pulled out all the way out and was resting on my shirt! I thought it was just partially pulled out. It was worse than I thought. With the trach out, there was no way to connect the vent tubing to my trach. My dad called my mom and she came in, grabbed the ambu bag, but she had no way to connect it to the trach. Instead she covered the stoma and put the air piece in my mouth and started to pump air into my lungs. At the same time she managed to call 911. I heard the sirens within a minute coming down my street. Then I must have blacked out, because next I saw the paramedics leaning over me, then I blacked out again and came to in the E.R. I have no memory of being put on the gurney or the trip in the ambulance. When the paramedics arrived I was turning blue. They added a face mask to the ambu bag and continued to bag me. I didn't get sufficient air the way my mom was doing it. My mom was pumping the air through my mouth, but air was leaking through my nose. She should have connected the face mask to the ambu bag. It is great that I have two fire stations within a mile or so of me, so they were there within minutes. Any longer, and I probably wouldn't have made it.
At the E.R. they continued to bag me, while they tried to find out what trach I needed. In the meantime, my dad put my wheelchair with my vent in the van and delivered it to the hospital. They managed to get me to talk long enough that I could tell them, my extra trach was in my bag on my wheelchair. When my nurse and friend, Ernie, arrived, he connected me to my ventilator. The E.R. nurses' arms must have been very tired. Then he showed the E.R. doctor how to put in the trach. I guess the doctor had never done it before. Once I was with a new trach and connected to my ventilator, and was breathing fine they allowed me to go home. I drove my wheelchair out of the hospital and rode home in my van. It felt great to be back in my own home and alive.
This is yet another reminder of how fragile life is, especially for ventilator users. It is also a reminder to my caregivers not to panic when something goes wrong, for this prevents clear thinking. The solution was as simple as plugging the tube back in. But, panic caused my dad not to see the solution. Panic can happen to anyone. Once it starts it is hard to stop it. The frustrating part was that I could see the problem and solution, but was unable to talk to tell my dad. Everything seemed to be moving in slow motion. I felt like this was the end. I couldn't do a thing about it and was becoming resigned to this outcome. I was also angry that my life would end in such a stupid manner. It brought to mind my good friend Joe Malone, who died in a similar way. It was a sense of relief when I woke up in the E.R. I had used up another of my nine lives. At first I was upset with my dad, and when I could speak, I said,"what an idiot!". But, once I got that out of my system, I couldn't stay angry. What would have been the point of being angry? It was an accident. I had made it, so that was what was most important. It was a learning experience for everyone involved. I doubt it will happen again.
Thursday, September 18, 2008
I recently came across the story of Matt Eddy, a 30 year old man with Duchenne Muscular Dytrophy from Lynn, Massachusetts. He is rolling across America from Boston to Long Beach, California in his power wheelchair (ventilator included) to raise public awarness about disability and to support his charity, Matt's Place, which aims to build accesible housing for people with disabiities, so they can live in their communities and not in institutions. Check out his blog, Ramblings in the Dark, to follow his progress across the nation. As I write this, he is about eighty days or so into his journey and somewhere in New Mexico. I am impressed by his determination and guts. Go Matt!
Thursday, September 11, 2008
Friday, September 05, 2008
Last January I wrote about a wonderful documentary film called, Darius Goes West. It is the story of a young man with Duchenne Muscular Dystrophy named Darius, who travelled across the country to Los Angeles with friends to be on the MTV show Pimp My Ride to get his power wheelchair customized. I was asked by Darius and his crew to publicize a new fundraising effort they just recently launched. They hope to sell a million DVDS of the documentary in a year to raise money for research to find a cure for Duchenne Muscular Dystrophy. The DVDs sell for $20; $17 goes directly to research and $3 goes to making more DVDs. If you want more information and want to purchase DVDs of this uplifting documentary, go to Darius Goes West.Org.
Friday, August 01, 2008
Wednesday, July 23, 2008
Monday, July 21, 2008
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.
Wednesday, July 16, 2008
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.
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).
Wednesday, July 09, 2008
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)).
Friday, July 04, 2008
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.
Friday, June 27, 2008
Thursday, June 05, 2008
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.
Tuesday, May 27, 2008
Friday, May 23, 2008
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.
Tuesday, May 20, 2008
Wednesday, May 14, 2008
Wednesday, May 07, 2008
Saturday, May 03, 2008
Tuesday, April 22, 2008
Saturday, April 19, 2008
Wednesday, April 09, 2008
The show started late. I could feel the excitement and anticipation building as the wait lengthened. Finally, the lights in the arena went out and a steady roar arose from the crowds and chants of Bruce! Bruce! could be heard. The darkness was broken by a single spotlight which shone on a white calliope organ which rose from the back of the stage. It played some carnival music. At this point, the excitement was unbearable. Finally, the carnival music stopped and the calliope organ lowered back down. The stage lights came on and the crowd roared as the song Thunder Road blared from the speakers. Then without stopping they played Radio Nowhere, Lonesome Day, Gypsy Biker, Murder Incorporated, Magic, Atlantic City, Candy's Room, Reason to Believe, Prove It All Night, Because the Night, She's the One, Livin' in the Future, The Promised Land, and Brilliant Disquise. Next he played The Ghost of Tom Joad with Tom Morello from Rage Against the Machine. It was followed by Last to Die, Long Walk Home, Badlands, and Out in the Streets. Bruce and his bandmates gathered on the stage to bow. The cheering continued even after the band left the stage and the incessant chant of Bruce! Bruce! Bruce! could be heard. Bruce and his band returned for an encore. They performed Meeting Across the River, Jungleland, Born to Run, Dancing in the Dark (a six-year-old girl was brought up on stage to be his dancing partner), and ended with the rousing American Land. As I left the arena I felt elated. I had just seen a great concert.
This was my first time to see Bruce Springsteen in concert. I had always heard that he put on a great show. I was not dissappointed. I was amazed by the energy shown by the 58 year old Springsteen and his band. They performed for close to three hours without any breaks. From start to finish they played one great song after another. The drumming of Max Weinberg, guitar playing of Steven van Zandt, and sax playing of Clarence Clemmons, made for a great compliment to Bruce. The show went by too fast. It was well worth the expense.
Tuesday, April 08, 2008
Friday, March 28, 2008
After the terrible events of 9/11 the U.S. received much good will from around the world and even support to go into Afghanistan. But, this goodwill was soon squandered by our rush to war with Iraq and our subsequent invasion of a country which didn't attack us. They scared the American public with the catchphrase, weapons of mass-destruction, and visions of mushroom clouds over U.S. cities. They also tried to link Iraq to the 9/11 attacks and Al-Qaeda. What many people don't realize is that Osama Bin Laden detested Saddam Hussein. Al-Qaeda was not in Iraq until our invasion and occupation of that country. But, with that said, more of the attacks on U.S. personnel have been carried out by Iraqi insurgents who don't want us in their country. Attacks have decreased recently because we have paid off the Sunni insurgents with large amounts of cash. But, the violence goes on with little end in sight.
I look forward to the day when our troops can return home. This will not happen anytime soon. The problem of Iraq will be inherited by the next president. If it is John McCain, we can expect to be in Iraq until who knows when. If it is Barack Obama, there is a good chance we will begin a withdrawal. Hillary Clinton is also for withdrawal. But, I don't completely trust her. She voted for the resolution to go to war against Iraq. Barack Obama was against the war from the beginning and still is. This is one of the big reasons why I support Obama for president.
I grieve for our fine men and women who have given their lives in the service of this country. I feel that they have died in vain. Also, I feel for the families and friends of the fallen. I am sad for the sons, and daughters who have lost their fathers or mothers, brothers and sisters who have lost a sibling, mothers and fathers who have lost a son or daughter, wives and husbands who have lost a spouse, girlfriends and boyfriends who have lost their sweethearts, people who have lost good friends. War creates a chain of tears. While I mourn the dead, my thoughts also go to the 20,000 or more who have been added to the the ranks of the disabled, through loss of limbs, head injuries, etc. And, last but not least all the Iraqis who have lost their lives, or have been injured as a result of the violence. There is so much suffering all around. We must not forget this.
Monday, March 03, 2008
Today I went to the exhibit, A Day in Pompeii , at the San Diego Natural History Museum. The ancient Roman city of Pompeii was buried by the massive eruption of Mount Vesuvius in 79 A.D. In 1748, the city was discovered and archaeologists began to excavate the site which was very well preserved. I have always been interested in Pompeii and was excited to have the chance to see artifacts from this city, especially since I am unable to go to Italy and see it in person. The display of everyday items, such as jewelry, household items, statues, and colorful frescoes gave an insight into the daily life of the city. They also showed a video with computer recreations of what the city and its buildings probably looked like. But, the most interesting were the body casts of some of the victims in the positions they were in as they died. The bodies of the victims were encrusted in ash, and their bodies decomposed, but the form of their body remained. An archaeologist decided to pour plaster into the hollow shells to create the body casts. There was a man covering his mouth and nose in a futile attempt to protect himself from inhaling the thick ash, there was a guard dog that was so well preserved that even the collar was clearly visible, and the most touching was the forms of a man and woman lying together; the man was reaching out to shield the face of the woman to protect her from the ash. I could just imagine the fear of these people as they were overcome by the ash. This helped to bring me in touch with the past. It is one thing to read about it, but to actually see items used by the people of Pompeii, and to see actual people that lived there makes the history of Pompeii less of an abstraction and more of a reality.
Sunday, February 17, 2008
The event started off with a local rock band, The Fijis. They are three tenth graders who play blues and rock. For teenagers they were pretty good. Then there was a magic show with the magician Steve Spellman using pro athletes as assistants. He performed at my 39th birthday bash last year. He is humorous and very talented. The show went pretty well, except for Steve falling off the stage. After the entertaining show they showed, a tribute to friends John Carney and Junior Seau. The evening got serious when they talked about the great work of TAPS. Two teenage girls that were helped by TAPS gave their moving testimonials. The evening ended with an auction. All through the evening there was also a silent auction of sports memorabilia. It was nice to be able to mingle and talk with the athletes. I met Junior Seau(NFL; New England Patriots), David Wells(MLB; Pitcher for the LA Dodgers), Drew Brees(NFL; Quarterback for the New Orleans Saints), Phil Nevin(MLB), Kyle Turley(NFL;New Orleans Saints), Joe Horn(NFL;Atlanta Falcons), Billy Ray Smith(ex-NFL, local sportscaster). They were all very nice and all posed for pictures with me. Junior Seau gave me his autograph. I usually don't like to ask for autographs, but he offered it. It was an enjoyable night.
Tuesday, February 12, 2008
They finally received the trach at the end of January. After that long wait, I was eager to get the old trach taken out and the new one put in. The new trach was supposed to be an improvement over the other one. The doctor took out my old trach, put down the bronchoscope to check out my trachea, and everything looked good. Then he inserted the new trach. It didn't fit right. The trach tube was too long. The measurements got screwed up somehow. He then tried another trach. It didn't fit. A third trach was inserted. It was too big. It was uncomfortable and I was unable to talk. I was not happy. They were going to keep it in. The nurse said I might be able to talk in a week. This was unacceptable. I made my displeasure known by shaking my head and mouthing to Ernie that I couldn't talk. When they realized that I was very displeased that I couldn't talk, the doctor decided to put in a fourth trach. This fourth trach was exactly like the original trach that they were going to change. I was relieved that I was able to talk. After all this ordeal, I was very anxious to get out of there. They wanted me to stay a while for observation. After a short time I told them I wanted to leave. When I was told I could leave, I zipped out of there in my chair at full speed. Good thing that nobody got in my way. I will come back in two months for the doctor to check things out and maybe put in a new trach.
Tuesday, January 08, 2008
The documentary, A Brief History of Time, is about his life and work. It is worth seeing
Sunday, January 06, 2008
if you don't have long to live."