Not Confined

In countless articles and news stories about people with disabilities who are wheelchair users, the person is often referred to as being confined to a wheelchair. This phrase makes it seem that having to use a wheelchair is a horrible fate. It creates images in my mind of a person being chained to a wheelchair, or a person being punished for a crime by being confined to a wheelchair.

As a wheelchair user for thirty-four years, I don't consider using a wheelchair to be a terrible thing. To me it is a device of freedom and liberation. At the age of eleven, walking became too much of a struggle, so I got my first wheelchair. The wheelchair was a relief and enabled me to move around minus the struggle to walk and the frequent falling down. For a short time I was able to wheel myself around, but when that became too difficult, I got my first power wheelchair and was able to zip around with less effort. I was not confined. If not for the wheelchair, I would be bed-ridden and unable to go anywhere. My wheels serve as my legs.

I feel that a phrase such as, confined to a wheelchair contributes to the feeling among people without disabilities that a person who uses a wheelchair deserves pity, or is a hero dealing with a horrible fate. Wheelchair users don't want pity, or feel like they deserve a medal for just surviving.

The Earth From Far Away

 

The Cassini spacecraft took this picture of Saturn and also captured the image of a faint blue dot. This faint blue dot is Earth. From this far away, our home is just another celestial object. It is insignificant in the mind-blowing vastness of space. As Carl Sagan said, "...we live on an insignificant planet of a humdrum star lost in a galaxy tucked away in some forgotten corner of a universe in which there are far more galaxies than people."

 

This little blue dot is all that we have. We will not be colonizing other planets any time soon. It is imperative that we do all we can to protect this precious planet. This is not a liberal or conservative concern, but it is a human concern. All the inhabitants of this planet are in this together. Instead of finding ways to kill each other, we should be finding ways to keep this planet liveable.

My Birthday

My last blog post was on my birthday last year. I have decided to resume my blog on my birthday this year. It is a new start.

Today I am forty-five. When I was diagnosed with Duchenne muscular dystrophy at the age of six, I was not expected to make it past my teenage years. I have shattered those expectations decade after decade. From this, I have learned not to pay much attention to deadlines. Life is a rollercoaster ride that must come to a stop eventually, so you just have to enjoy the ride while it lasts. It is a series of ups and downs. If there were no downs, than the ups wouldn't be so great. Enjoying the ride for such a long time is my way of thumbing my nose at DMD. DMD has not defeated me yet, and I don't plan on letting it any time soon.

On my birthday, I remember all the friends and acquaintances that I have lost to DMD. I also reflect on those who I didn't know who were taken to soon by DMD.  Any loss to this disease is a great loss to the DMD community. All of us with this disease are fighting against a common foe. I hope for the day when no one else has to face this scourge.

Today is my Birthday

Today is my birthday. I am forty-four years old. Despite Duchenne muscular dystrophy, I have made it another year. I am lucky to have come this far. Many people with DMD have not made it past their teens or twenties. When I was first diagnosed at six, the doctors expected me to die in my teens. I have proven them wrong again and again.

I refuse to give up on life, no matter how hard it gets. The negatives of living with DMD, which can be so dishearting and frustrating, are overweighed by the good things in life. A bad day when you are so frustrated that you feel like giving it all up can be remedied by the sunshine on my skin, the sight of a colorful bird at the feeder, the beautiful melody of singing birds, a sublime sunset, friends and family, my cat curled up at my feet. The simple things in life make it all worthwhile.

I don't consider myself to be a hero or an inspiration. I am just a person, trying his hardest to make it through the adversities of life and enjoy the ride at the same time. We all have our challenges, whether small or great to deal with. Mine may be larger than most, yet I don't think I would appreciate life so much if everything was rainbows and blue birds. There have to be thorns in life too.

As James Taylor sang, "The secret to life is enjoying the passage of time." As I get older, I realize the truth in this profound statement. Since we can not stop the inevitable passage of time, we should enjoy life to the best of our abilities. Each day I wake up, despite the hardships, is a celebration of life. You have to make the best of this short sojourn on Earth.

Next year at my forty-fifth birthday, I will be celebrating another victory over DMD and finding ways to enjoy life. I fight on in the memory of all those who have lost out to DMD, many of them far too young.

Where has my muse gone?

In January I wrote that I wanted to be more prolific in my blog writing. In 2011, I only wrote four blog posts. Since January I have written nothing on my blog. It is as if my writing muse has abandoned me. My urge to write is strong, yet when I go to write a blog post, the words don't come out. The blinking cursor is all that I see. It seems as if my creative well has run dry. This drought must end. The creative well has to flow again.

What is holding me back? I have searched my self, but no answers are forthcoming. It could be that the old nemesis, apathy has taken hold, or that I have nothing to say. It could even be a severe case of writer's block. But, whatever it is that is holding me back, I must push it out of the way and just write. Now, if I could just come up with something to write about.

I need ideas. Do any of you reading this have any suggestions? If so, I would appreciate your input. I hope this post is just the start of many more.

Happy New Year!

Happy New Year everybody! It has hard to believe that 2011 has come and gone. 2012 arrived in such a flash. Time seems to go faster and faster, the older I get.

It will be a year of new possibilities. A year to do some of the things I didn't do last year. I will not do a summary of the past year. It is over and it is time to move on. This is part of my resolve to live in the now, and not dwell on the past and future. I will live day by day and not worry about things I can't change (easier said than done). Despite Duchenne Muscular Dystrophy, I am still here to see yet another year (In July I will be 44). For this I am thankful. Because of this gift, I must enjoy life to the best of my abilities. I will try not to sweat the little things. This year I hope to get even more active in disability advocacy and speak more clearly for those without a voice. With challenges to independent living for people with disabilities there is much work to be done. I may even take it to the street.  I neglected my blog last year, but this year I plan to be more prolific. Now it is time to embrace 2012. Bring it on! I am up to whatever the year throws at me. Just hope I hit more home runs than strike outs.

Voice for Independent Living

I am a member of Voice for Independent Living, a group that advocates for the rights of people with disabilities to live independently in their communities. We write to, and visit our legislator's offices, and attend rallys. The group also provides training in advocacy and community organizing.
Most of the work of the group these days focuses on programs, such as Medicare, MediCal, Social Security, and IHSS (In-home Supportive Services). All these programs, in one way or another, make it possible for people with disabilities, and the elderly, to live independent lives in their communities, and in their own homes.

In the present political, and economic climate, these programs are under attack. Severe cuts to these programs could make it more difficult for many people with disabilities, and the elderly to live at home. That would mean that many more people would end up in nursing homes.

This group also aims to fight an institutional bias, which tends to favor institutionalization over community based programs. Although there has been great progress over the years in independent living, this institutional bias still exists.

The group is part of Access to Independence of San Diego (A2I), a non-profit, non-residential center for independent living (CIL) that serves the city and county of San Diego. We meet twice a month at the A2I office in Mission Valley (8885 Rio San Diego Drive, Suite 131, San Diego, CA 92108). There is teleconference equipment for those who can't physically be there. We are a fairly small group and are in need of more members. The group is run by Raquel Vega, a community organizer. If anyone in the San Diego area would like to be a part of this group, please contact Raquel Vega at (619) 293-3500 ext. 236 or e-mail at rvega@a2isd.org

E-books

I browse through the catalog of e-books on Amazon.com, find a book I want and download it to my kindle reader on my PC. In a matter of seconds, the book is on my computer and ready to be read.

It is so convenient, and for a person with a disability, like me, it makes reading a lot easier. I don't have to ask someone to get a book out of the bookshelf for me, and since I can no longer turn the pages of a book, the click of the mouse, or in my case a hands-free mouse, is all it takes to turn pages. If not for e-books, I would have to listen to audio books or have someone read to me. Listening to audio books can be enjoyable, but it is not the same as reading the written word on a page.

Though e-books are a great benefit to me and many others, I still miss the old-fashioned book. I remember going to the book store, perusing the stacks and buying a pile of books. The alluring smell of new books filled the store. I recall the crack of the spine of a new book as I opened it for the first time, and the sound of pages flipping as I moved through the book. The sight of various books filling a bookshelf was always a pleasant sight and much preferable to a shelf of knick-knacks.

I enjoyed going into used bookstores and looking for low-priced treasures and coming out with  a bag full of books. The dusty smell of old books reminded me of neglected relics of the past. Or going to the library and roaming through the stacks and being overwhelmed with so many choices of books to check out. There were so many ways to interact with books.

I look at my once crowded bookshelves, and now see a paltry selection of books. It's like losing friends. Books were a tangible thing that could be touched, held, smelled. An e-book is a file on a computer, which you interact with in a more sterile way.

Though I may miss these things, I have learned to embrace this new technology. Without it, I would be unable to continue my love of reading.

Rush: The Time Machine Tour 2011

On Saturday, June 18, I saw Rush, the Canadian rock trio, in concert at Cricket Wireless Amphitheater in Chula Vista. I have been a long time fan, yet this was my first time to see them in concert. Ernie, my nurse accompanied me. Going to concerts is one of the perks of working with me.

I became a fan of Rush thirty years ago. It was 1981 and I was in sixth grade. Rush had recently released their album Moving Pictures, and the song Tom Sawyer was getting much airplay on the radio. I enjoyed the song, so I bought the album. I listened and enjoyed all the other songs on the album. Over the years I bought all their albums and enjoyed them all. But, to this day, Moving Pictures, is my favorite Rush album.

By the time I arrived at the amphitheater, the excitement was growing stronger within me. I was actually going to see them live. My seats were located in the wheelchair section on stage right, behind the first section closest to the stage. Last time I was here for a concert, I sat on the left side where the only way to get there was by a cramped elevator, which I had to squeeze my chair into. There was only enough room for me, but not my nurse. I was nervous about being stuck in there alone if something went wrong with the elevator. I vowed never to sit there again, even though they were great seats. This time I sat on the right side where you can access the seating area by a ramp. It was nice not having to squeeze into the elevator. The view of the stage was excellent, especially since the wheelchair seating is raised enough that people standing in front of me won't block my view.

I was excited to be there and couldn't wait for the show to start. As the seats started to fill and as it neared showtime the chatter and excitement started to grow. The concert started with a humorous short video starring the members of Rush. It was shown on the large video screen at the back of the stage. The cheering started during the movie, but when the band took to the stage, the cheering rose to an incessant roar.

The three band members: Geddy Lee, vocals, bass, and keyboards; Alex Lifeson, guitar; and Neil Peart on drums, walked on stage as the pent up cheers filled the amphitheater. They started the set with the The Spirit of Radio, then played Time Stand Still, Presto, Stick It Out, Workin' Them Angels, Leave That Thing Alone, Faithless, a new song BU2B, Freewill, Marathon, and ended with Subdivisions.

After an intermission they showed another humorous short video, also starring the band members. As the video ended, they started the second set. The second set started off with all the songs off my favorite Rush album. Moving Pictures. This also marked the 30th anniversary of the release of this album. The songs off the album were Tom Sawyer, Red Barchetta, YYZ, Limelight, The Camera Eye, Witch Hunt, Vital Signs. They played Caravan , a new song which will appear on their upcoming album. There was an awesome drum solo (Love 4 Sale) by Neil Peart, in my opinion, one of the greatest rock drummers. Neil Peart was completely surrounded by his extensive drum set, which included acoustic, as well as electronic drums. He played with extreme intensity, and energy. At one point, the whole drum set rotated. Next they played the anthem Closer to the Heart. The song started with the instrumental song, Hope. It gave Alex Lifeson his chance for his guitar solo. During the song, people held up their lighters and lit up cell phones as they swayed to the song. After that, they played the sci-fi inspired 2112 Part I: Encore, and 2112 Part II: Temples of Syrinx. They came back for an encore and ended with the instrumental La Villa Strangiato and the hard-rocking Working Man.

After all these years they still sounded pretty good. Geddy Lee's voice was still good, even though he could not always hit the high notes like he used to. But, his rhythmic bass playing was still top notch. Alex Lifeson's guitar playing was still superb and masterful, Neil Peart's drumming was still full of power and energy. They could still rock. The stage show was full of lights, smoke, flames, and pyrotechnics. Above the stage was a futuristic-looking lighting rig with multiple arms, which moved up and down, and in different directions. This made for an awesome light show. Throughout the show on the video screen at the back of the stage they showed videos of various images and close ups of the band performing.

It was great to have seen my favorite band in concert finally. I hope to see them again on their next tour.

[Pictures were taken by Ernie]

Set List

The Spirit of Radio

Time Stand Still

Presto

Stick It Out

Workin' Them Angels

Leave That Thing Alone

Faithless

BU2B

Freewill

Marathon

Subdivisions

Tom Sawyer

Red Barchetta

YYZ

Limelight

The Camera Eye

Witch Hunt

Vital Signs

Caravan

Drum Solo (Love 4 Sale)

Closer to the Heart (with "Hope" solo intro)

2112 Part I: Overture

2112 Part II: The Temples of Syrinx

Far Cry

La Villa Strangiato

Working Man

[Set list courtesy of setlist.fm]

I'm Back.

I 'm back. It has been a while since I last posted to my blog. I had some more health problems and took a break from blogging. My last two posts (Hospital, A Shocking Visit to the ER) were about my heart problems, and since then the health problems continued.

Last November 23rd, after days of feeling ill and having persistent high fevers, my doctor suggested I go to the emergency room. I am never thrilled to go to the hospital, but I knew that this was necessary. This had been going on too long and it needed to be taken care of.

I decided to go to UCSD/Thornton Hospital in La Jolla. Usually I go to Scripps Memorial Hospital in Encinitas, which is the nearest hospital. But since I had been at the ER in Thornton Hospital earlier in the month for my heart troubles, I thought it would be good to go there.

My nurse, Ernie, drove me down to the ER. At the ER, they did blood work, which usually requires quite a few needle pokes to get blood from me, took a chest x-ray, and started an IV. The x-ray showed pneumonia in my left lung. They started me on a series of strong antibiotics.

But, the pneumonia was just part of my troubles. While in the ER my heart started to act up. I had rapid heart rate and atrial-fibrillation. A few times it converted to a normal rhythm by itself, but a few times they had to use a drug through the IV to convert the heart. They managed to get it under control for a while.

After hours of waiting, I was finally moved to a room in the ICU. I was transferred from the gurney to the much more comfortable hospital bed. The gurneys in hospitals are like concrete slabs. I wonder what sadist invented them. When the respiratory therapist suctioned my trach, my heart started acting up again, and it did it again when the nurses turned me. Through the evening I kept having heart problems. The next two evenings were no different. Finally, after trial and error they found the right heart medication, Fleccanide. and for the rest of my hospital stay, my heart stayed in a normal rhythm. It was a relief to go days without my heart acting up. Now, my only concern was beating the pneumonia. As a person with Duchenne Muscular Dystrophy I understand how serious pneumonia can be if it is not under control. It has the potential to be deadly for people like me. In addition, they found fluid around my heart. The only treatment was to let it go away by itself.

Lucky for me, my hospital stay was only five days. Unfortunately I was there for Thanksgiving. It was strange not being home to celebrate with my family. This was the first time I had ever missed a holiday at home. I was feeling down that day. As I was lying in bed, bored and in need of cheer, a women brought a therapy dog into my room. The dog was a friendly golden retriever. The dog jumped up on a chair next to my bed and proceeded to lick my arm. It was like she was telling me that everything would be all right. That simple act made my day and lifted my spirits.

The next evening, my brother Bill surprised me by flying down from San Francisco and showing up at the hospital. That was a nice surprise.

During my stay at hospital , my mom, dad, brother, and sister took turns during the day being with me, and Ernie was there overnight. It is always nice to have someone there because the nurses are busy and can't always be there. Also, I am unable to push the buzzer if I need assistance. The nurses are very appreciative of the extra hands. I found the staff at Thornton Hospital to be pleasant and most had a great bed side manner.

On Monday, November 28, I was discharged. They sent me home on antibiotics. They thought the pneumonia was under control. I went home with the hope that they were correct. But, the fevers continued to plague me. One morning, while Ernie was trach suctioning me, he had trouble clearing the trach, and I was having trouble breathing. Since the ventilator wasn't giving me sufficient breaths, Ernie had to use the ambu bag to force breaths into my lungs. He had my mom call 911. The paramedics arrived and drove me to the ER at Thornton Hospital. They had to bag me the whole way. At the ER they took blood work, chest x-rays and started an IV. They diagnosed pneumonia and started me on IV antibiotics. I would have to be admitted. They had no room at Thornton, so they were going to send me to UCSD Medical Center which is farther away. Instead of going farther south, I decided to be transferred to Scripps Memorial Hospital in Encinitas, which is much closer to home. Scripps is a very good hospital and I have been there many times over the years. I was taken by ambulance up to Scripps Hospital. Once I arrived I had to do more waiting for a room to be made ready for me. After waiting hours there, I was finally taken to a room in the ICU. It's always a relief to get off the gurney.

The last time I was here was in 2006. It was a like a reunion, since many of the same nurses and respiratory therapists that treated me back then were there. I received very good care while I was there, as I did the other times I was there in the past.

I was in the hospital for five days. As usual, my mom. dad, and sister took turns spending time with me during the day, and Ernie stayed the nights. They treated me with IV antibiotics and had to wait and see. I responded well and it seemed like the pneumonia was again under control. On December 23, I was discharged and sent home on antibiotics. It was an early Christmas gift to be home in time to celebrate Christmas with my family.

It seemed like the pneumonia was gone. But, after I had finished ten days of the antibiotics, the fevers returned. I went back to spend two more days in Scripps Hospital and received more antibiotics. They sent me home without antibiotics. At the end of January the fevers returned. I saw the doctor, and he put me on antibiotics for ten days. This last regimen got rid of the last traces of infection and I have been in great health since.