A Close Call

I had a close call on Thursday, September 18. It was an upsetting experience and I was unsure whether to write about it or not. That is why it has taken me so long to post it. I decided to write it as a reminder to my fellow ventilator users how tenuous our lives can be.

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.

Matt Eddy

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!

9/11 remembrance

It's been seven years since the sad events of September 11, 2001. The horrible pictures of that day are still fresh in my mind. I still have a heavy heart when I see the planes crashing into the twin towers, the unbelieveable sight of the towers collapsing, and the explosion as the plane hit the Pentagon. The bravery and sacrifice of the passengers of Flight 93, who brought the plane down in the Pennsylvania field, averting an attack on our nation's capital are not forgotten. Today is a day to put aside our differences and come together in remembrance of the lives lost on that tragic day.

Darius Goes West

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.

The Dark Knight

Monday I went to see the latest Batman movie, The Dark Knight. This version of Batman was a dark, disturbing and more violent telling of the story, which transcended its comic book roots. Christian Bale was well cast as Bruce Wayne/Batman. He has the right look to play the character and in this movie has a more serious demeanor. The Joker, played by the late Heath Ledger stole the show. He played the psychopathic, sadistic, and sinister Joker with a manic intensity, which made him a truly menacing figure. It was a powerful performance. Jack Nicholson's Joker in Batman, though putting on a fine performance was comically evil, and not as complex a character. It was an action-packed, special effects-laden film, but the real srength of the film was its deep, psychological dimension which drew me into the story.

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.