I logged on tonight thinking I would just give a brief update of where the hell I've been all month. My three or four readers have been desperate to know my whereabouts (thanking you for writing Ken in Witchita). Before I could get online, though, I spoke with Matt's brother, Elliott (who will no longer be identified as Matt's brother and will simply be known as Elliott). Whenever Elliott calls, I know it's going to be emotional. That's fine with me, because Elliott slowly reveals more about my deceased friend that I didn't know, nor would I have ever known if Elliott didn't want to include me in his life. It started as a fun call, bullshitting about the Twilight Zone (still one of the most influential shows in my life) and evolved into an intense discussion about our relationships with Matt.
Then Elliott did something truly heart warming and unexpected. He changed the course and asked me about Jacob and what he has to go through. He wanted to know about the struggles that I (and we) have. And I thought this was so remarkable considering the wedged that kind of got pushed between Matt and me was about CF. As I heard myself describing Jacob's daily routine, it didn't feel real to me. I felt like I was just reiterating some facts to someone. I hate when that happens. I want people to understand the first time. I don't want people to think we have a handle on it. I want them to feel the pain.
That's where I've been. I've been dealing with stress from the upcoming Great Strides. Each year as it approaches, I bury the stress and pain of gathering with other CF families. It brings me to tears. I sometimes hate it. CF has been on my mind in my writing too. I have been completing a new script that has a character who has CF.
I'm not trying to get on my soapbox with the script. It isn't a message film. But an opportunity was presented to me in which I would be allowed to write about the disease that effects my family... to try and put it in a realistic and positive light. Can I pass up an opportunity like that? What if that opportunity never comes again? Isn't it my responsibility to use whatever skills I have to raise awareness and help find a cure? That's the way I am looking at it.
I didn't start this blog for it to become a daily diatribe about Matt's death or cystic fibrosis. But those seem to be the only topics I'm not hesitant to open up about. Well, not anymore. What have I to lose if I don't criticize the bad films I've seen or give reviews of the great music or websites I've discovered.
Today is technically May 2, but I'm making this entry for May 1. A new month. A time to refresh myself and look inward.
Aloha.
Then Elliott did something truly heart warming and unexpected. He changed the course and asked me about Jacob and what he has to go through. He wanted to know about the struggles that I (and we) have. And I thought this was so remarkable considering the wedged that kind of got pushed between Matt and me was about CF. As I heard myself describing Jacob's daily routine, it didn't feel real to me. I felt like I was just reiterating some facts to someone. I hate when that happens. I want people to understand the first time. I don't want people to think we have a handle on it. I want them to feel the pain.
That's where I've been. I've been dealing with stress from the upcoming Great Strides. Each year as it approaches, I bury the stress and pain of gathering with other CF families. It brings me to tears. I sometimes hate it. CF has been on my mind in my writing too. I have been completing a new script that has a character who has CF.
I'm not trying to get on my soapbox with the script. It isn't a message film. But an opportunity was presented to me in which I would be allowed to write about the disease that effects my family... to try and put it in a realistic and positive light. Can I pass up an opportunity like that? What if that opportunity never comes again? Isn't it my responsibility to use whatever skills I have to raise awareness and help find a cure? That's the way I am looking at it.
I didn't start this blog for it to become a daily diatribe about Matt's death or cystic fibrosis. But those seem to be the only topics I'm not hesitant to open up about. Well, not anymore. What have I to lose if I don't criticize the bad films I've seen or give reviews of the great music or websites I've discovered.
Today is technically May 2, but I'm making this entry for May 1. A new month. A time to refresh myself and look inward.
Aloha.
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