10 November 2011

Shooting Star!

How do you ever prepare for something like this? Never in my wildest dreams did I expect to have to write something like this. I always hoped it would be the other way around. Yet it seems it is left to myself and someone else to always witness and report on these things. It has taken me a few weeks to get to the point where I could even start writing about it because of the shock and sadness it has caused.
You may recall from previous posts that I had a little sister with CF as well. She died when I was just 6 years old. I think of her and my cousin often and how I know that they are around helping me and pushing me to work hard to stay alive. As you may have guessed from my "ghost blog" using a pseudonym, I am a private guy. I don't let a lot of people into my emotions. Nor do I allow many people into my life in the inner circle. The one where they know what is really going on. This place is reserved for people who appreciate life and all the things that come along with it. For people who want to really know "How I'm doing".
This last month I received some bad news concerning a dear young friend. Someone who was immediately allowed into the inner circle. Someone who for all other purposes became that little sister that I had lost. She was just 2 years old when I met her. She was crazy and funny and loved to "run to the playroom" or "run to the fountain". We spent a few weeks together at the hospital. It was her first time and my 20th or so time. I spent many nights talking to her parents who also became fast friends. People who you can just tell care about others. How the years fly by. Isolated by illness, life heads in every direction. But there I was, always keeping tabs. Hearing about the drill competitions. Hearing about fun times. Hearing about trips and travels around the country. Celebrating the graduation from a far. A young girl doesn't need a crazy old man hanging around right...


A hand printed 6x8 black and white photo on the shelf. I reflect on often. I was there when she started the fight. It is obvious that she knew what she was doing. Her smile and attitude drew all who could see real wisdom. Small of frame, but large of heart and experience. The fires of affliction brings understanding that few can grasp. She learned that the only real control in this life is in love and patience and smiles.
So here I am writing this. Losing one again? How is this supposed to be easier?
Next time it will be her turn to show me the view from the windows...

05 March 2011

Running to Stand Still

JG and I had a late night conversation recently about me being sick and "doing too much". Sometimes JG and others get concerned about me doing so much and me pushing myself too hard. At times doing things when maybe I should be resting or something like that.

I will admit there are times, when in my mind I think, geez I would love to just crawl back into bed and sleep for a few more hours. Times when sitting in the shower thinking, man it would be so nice to relax in a hot bathtub to loosen my hips or shoulders, and enjoy the hot steam in my lungs. But who doesn't have these thoughts. Just because I have a better excuse to do those things some days doesn't always mean I should give in.

There is a reality to living with a long-term illness. That reality is that sometimes I don't feel great but life has to continue. Most people in life can stop when they are sick. They stay in bed for a few days until they are better. They miss a function here or a dinner date there. They stay home instead of going with the kids somewhere. They always have plenty of time to see the kids playing in the park, or doing their little dances. They can always hit the next movie with their friends or hang out some other time.

The reality of living 100 years in potentially only 50 years is that I gotta squeeze twice as much in. I can’t just sit out and wait for the next game. I can’t just wait until spring to see the kids playing in the park. I won’t just wait around for the next show to see my friends and hang out. Life waits for no man. And for some of us, life is rushing past at double speed.

There may come a time when I don’t have a choice anymore about staying behind or not visiting others. A time when those choices are made for me, similar to my choice for waterskiing, mountain biking, jogging or snowboarding (refer here). But until then I will push the very edges of my health. I will live life as much as I can stand, until I cannot stand. I will suck wind carrying crap up the stairs, because I still can. I will hack and sneeze and cough when raking leaves because I can.

Please be advised, I will continue to worry people, until I must stand still.