Thursday, April 24, 2008
Some time ago, there was a bit of an uproar on the forums at Children with Diabetes, because a person had used the word "retard" to describe an otherwise normal person that had done something extraordinarily incompetent. The mother of a child with Down's Synrome took great offense to this and said so. I sat back and watched the debate for some time and chose to simply tell this story:
One time I went to the bank on business. I submitted a change order, and the teller kept making mistakes counting the change back to me. She was a young girl, probably 19 years old, and she kept calling herself "retarded." I did not correct her, or ask her not to use that word, I just smiled and patiently waited for her to complete the transaction. After I left, I called my company's banker and told her the story of Billy. Billy was my big brother, and he was a "retard." Billy was born with severe cerebral palsy. He could not walk, he could not talk, and he had the mental capacity of a baby. I explained to my banker that I was not at all angry, because this girl obviously did not intend to use this word in an offensive manner, but that she should be cautioned that one never knows the full history behind a simple word.
I tell the story about job satisfaction because it relates to closely to satisfaction with life itself. If you are content in your life, you will find and maintain work that maintains your contentment. Billy, though he could not speak or walk, was probably the most content human being I have ever known. How many people get truly excited when "The Price is Right" comes on TV? He did. He was content with eating three hearty meals per day, and clapping his hands, and humming the few songs he could hum. In short, he was satisfied with life. Friends and family brought him great joy. Not new cars. Not big houses. The finest jewelry in the world would have meant nothing to him. But when his little brother, me, came to visit him in the State School, he was the happiest person alive.
Tonight is the anniversary of Billy's death. On this night in 2003, my father and I sat at his hospital bed in ICU and watched as his heart rate suddenly began to drop, and we knew that the end was near. We held his hands and stroked his thick, beautiful hair. We kissed him on his forehead and told him it was ok. It was ok for him to go now. He waited for his mother to show up, and then he breathed his last. We felt his skin grow cold in the minutes after his passing, and in an instant I was comforted with the knowledge that he was whole in Heaven.
Billy lived an extraordinarily rich life. The things we consider the minutiae of daily life brought him great happiness. Sitting outside watching the birds. Laughing at silly faces. Cuddling the new stuffed bear his mom or dad brought him.
We all have a lot to learn from the "retards."
Monday, April 14, 2008
Diabetes complicates everything. This morning, I rose at 5:30 to meet my trainer at the gym, and went I got there, I tested only to have my meter happily inform me that my BG was 522. 522? What? I showed this result to the trainer, and we agreed this would not be a good morning to workout, and so I went home, tested for ketones (there were none, which makes it even weirder) and went back to bed. I re-set my alarm for 7AM, so I could get Brenden up and off to school, only to realize at 7:15 there was no school that day.
The rest of the day was filled with all the minutiae that fills our days. Work. Meetings. Painting buildings. Well, not many of you do that last one, but today I did. Then I came home in time to hear both of my exhausted children losing their minds.
That's what we all dream of though, isn't it? A day full of things OTHER than diabetes? Days full of sleeping in late and doing all the things normal people do? Well, except for that hiccup at the beginning of the day, diabetes tended to stay out of the way, and for that I was grateful. So I am formally raising my voice. I'm raising my voice and telling people that normal is good, and I hope for many more just like it soon.
Today I gave an interview to a graduate journalism student about life with type 1 diabetes. About living with it yourself, living it through your precious child, and living it through your wife's deceased father who died of type 1 many years ago. Raise your voice and raise some money!!
Tuesday, April 8, 2008
Rhode Island, at just 1500 square miles, is just about twice the size of the county in which I reside. I'm also told it has it's very own language. I've never actually been to Rhode Island of course, but I did used to watch the television show Providence, starring one Melina Kanakaredes (whose name, ironically enough, is almost as big as the state itself.) But the funny thing is, it's one of those big small places. I doubt very much that people are crammed together like canned herring, and I suspect that if they were, they probably wouldn't mind very much. I wonder if there is some sort of inferiority complex that goes along with being a resident of the country's smallest state? Do they wear platform shoes and wear tall hats as if to prove a point? And when one travels through Rhode Island, do you stop and say to yourself in a satisfying manner, "My state is bigger than this one!" You could, but then you'd be pelted with an old cup from Del's Frozen Lemonade.
And then there's Tokyo small. A place so big, and packed with so many little people, that it's...well...small. I'm sure you've all seen it, but this is the place where there are people that are paid to cram as many people as they can into subway cars. Everytime I see the crab fishmen on Deadliest Catch cramming crab into the ship's holding tanks I always think of that. People there live in buildings that are so tall that Sir Edmund Hillary took one look and said "No thanks."
Maybe I'll visit Rhode Island one day. Maybe I'll visit Tokyo. Nah, I'm scared of heights.