I Can't Eat or Drink, but I Can Be Merry

It has been over seven years, since I last had a bite of food, or a sip of a drink. I lost the ability to swallow after I had a surgery to repair a hole between my trachea and esophagus. The doctor preserved my ability to speak, but was unable to save my ability to swallow. All my food and liquid is delivered directly to my stomach through a feeding tube inserted into my abdomen. My food is a liquid formula. Four times a day, I receive my formula and water. All my medications, vitamins, and supplements, are also taken through the feeding tube. Barring some miracle cure, I will never regain my ability to swallow.

Not being able to swallow would be considered by many people to be a terrible thing to deal with. At first, it was difficult not being able to eat my favorite foods, or to see people eating. I had dreams of food. Visions of pizza filled my head. But, over time, I learned to put these things in the back of my mind. At times, I still think or dream of food, but I am not wracked with a sense of loss. I adjusted to no longer being able to walk, and to no longer breathing on my own, so I have adjusted to not eating.

No longer being able to swallow is not all bad. I no longer have to worry about choking or aspirating. I don't give any thought to what to eat, I save money by not eating out or shopping at the supermarket, and I don't have to eat foods I don't like. No scallops, liver, or brussel sprouts. I will never get a chance to try haggis, tripe, or sweetbread. Life is not over because I can no longer swallow.

Todd Galli. Gone, but Not Forgotten 1976-2012

A year ago today, my friend, Todd Galli died peacefully in his sleep. Like me, Todd had Duchenne muscular dystrophy and used a ventilator. He may have only lived thirty-six years, but his was a full life. His disability did not keep him from enjoying life to the fullest. If he wanted to do something he would make it possible. To him obstacles were there to be overcome, not to keep him down. He was determined not to miss out on life. Years ago he made a list of things he was going to accomplish. A month or so before his death he had completed his list.

There were many items on his list. One item was his desire to climb a mountain. For a person in his condition, this was an audacious plan. Todd was undaunted. He raised the funds, recruited volunteers, and had a special chair made so he could be carried up the mountain. Once everything was arranged he was able to climb a 10,000 foot mountain in the Sierra Nevadas. Another was his desire to go sailing. With the help of a local charity, he was able, through the help of adaptive controls to control a small sailboat.

His most important items on the list were getting married, and being a father. He met his wife, Molly on an internet dating site, and it was a great match. They were together for ten years, and married for eight of those years. They were made for each other. The two of them became a family with the adoption of Mary Grace. Todd was so happy to be a husband and father. He showed a deep love for his wife and daughter, and always had their best interests at heart.

Though I only knew Todd about five years, his life has had an influence upon me. I strive to do more with my life, and to not give up on my dreams. He was always encouraging me to go for it. I may fall short at times, but I still make the effort.

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.