Christmastime

Another Christmas has come and gone in the blink of the eye. Though the season has ended, the spirit of the season should not. As Scrooge says after his epiphany, "I will honour Christmas in my heart, and try to keep it all the year." So should we all. Peace, joy, goodwill, and giving are the hallmarks of the season, but they should be practiced all year.

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.