Light, Dark, and Real: Mini Vacation, Family, and Letting it all Out
Brian's sister was here for about a week, she left Tuesday morning. We spent a lot of time talking and eating and hanging out and it was a good thing.
One afternoon, I did something a lot of people would think was weird or morbid. It startled my mom a lot.My poor mom. It's a lot for an old woman to absorb. I went to the Uptown theater and I sat alone and watched the movie/documentary about Steve Gleason. Steve Gleason was a 34 year old retired football player, a player who had scored big for New Orleans after the hurricane and was something of a sports legend when he was diagnosed with ALS. Thirty four, just over half Brian's age. His wife had a baby just about nine months after his diagnosis. He lives today, having chosen to go the distance with a tracheotomy, which only 5% of ALS patients do when the condition hits the muscles that control breathing. It is very different from the choices and wishes Brian has discussed with me. I respect Brian's choices, and I respect Steve Gleason's. This post is not about that.
So, why the fudge would I go and do this, watch this alone no less? Because alone is the only way I COULD watch this, the only way I would want to. I had all the company I needed right up there on the screen, a wife in a very different place in her life, a young woman and man with a baby but who's lives had been hit by this thing that only 5400 people in the U.S. will be diagnosed with this year, just as we were. Their tragedy is greater than ours, absolutely. Wealth could never make up for all they have lost.Their challenges are greater too. ALS is a paradox in that way too. A potentially very expensive condition that shows you the limits of money in a big way. Yet Michel and I were in a some things in just the same place. I saw her tear up as she watched her wedding videos, felt like I could hear her thinking "THIS happened after that?!". I heard and saw her watching him stumble at a gathering the first year he had it and again tear up. Progression is real.
SO, you might be thinking, that does not answer WHY would I would watch this. Because I needed to see it, feel it "with" people who understood and let it out. I sat alone in that theater and let the tears roll down my face three, four times. It felt like a luxury. Emotional "Spa Day". I needed that. I am not sure before Brian's diagnosis I would have understood seeing this alone myself. In a support group, I would have to then interact with people one on one and frankly that might overwhelm me now. This I could do.
So the week progressed, and a busy one it has been. Now, I am off for four days and we are hitting a 42 foot houseboat for four days on Lake Vermilion. With a hot tub no less, The cats and pups with be at home for three nights with a co worker right here in their own house. It's the end of summer of we will be doing a nice thing together, something we always thought about but were going to do "later". Well, later is here now.
I swear, next time I need to get on here and post a nice memory or two and post about our boat weekend. I am sorry if these writings seem to dark sometimes. I realize this blog is far from everyone's thing - but it is real, and honest and mine. You might wonder where the light is in this one sometimes - well the light is always gonna be the love. Sounds hokey but it's true. Thank you for joining me here.
One afternoon, I did something a lot of people would think was weird or morbid. It startled my mom a lot.My poor mom. It's a lot for an old woman to absorb. I went to the Uptown theater and I sat alone and watched the movie/documentary about Steve Gleason. Steve Gleason was a 34 year old retired football player, a player who had scored big for New Orleans after the hurricane and was something of a sports legend when he was diagnosed with ALS. Thirty four, just over half Brian's age. His wife had a baby just about nine months after his diagnosis. He lives today, having chosen to go the distance with a tracheotomy, which only 5% of ALS patients do when the condition hits the muscles that control breathing. It is very different from the choices and wishes Brian has discussed with me. I respect Brian's choices, and I respect Steve Gleason's. This post is not about that.
So, why the fudge would I go and do this, watch this alone no less? Because alone is the only way I COULD watch this, the only way I would want to. I had all the company I needed right up there on the screen, a wife in a very different place in her life, a young woman and man with a baby but who's lives had been hit by this thing that only 5400 people in the U.S. will be diagnosed with this year, just as we were. Their tragedy is greater than ours, absolutely. Wealth could never make up for all they have lost.Their challenges are greater too. ALS is a paradox in that way too. A potentially very expensive condition that shows you the limits of money in a big way. Yet Michel and I were in a some things in just the same place. I saw her tear up as she watched her wedding videos, felt like I could hear her thinking "THIS happened after that?!". I heard and saw her watching him stumble at a gathering the first year he had it and again tear up. Progression is real.
SO, you might be thinking, that does not answer WHY would I would watch this. Because I needed to see it, feel it "with" people who understood and let it out. I sat alone in that theater and let the tears roll down my face three, four times. It felt like a luxury. Emotional "Spa Day". I needed that. I am not sure before Brian's diagnosis I would have understood seeing this alone myself. In a support group, I would have to then interact with people one on one and frankly that might overwhelm me now. This I could do.
So the week progressed, and a busy one it has been. Now, I am off for four days and we are hitting a 42 foot houseboat for four days on Lake Vermilion. With a hot tub no less, The cats and pups with be at home for three nights with a co worker right here in their own house. It's the end of summer of we will be doing a nice thing together, something we always thought about but were going to do "later". Well, later is here now.
I swear, next time I need to get on here and post a nice memory or two and post about our boat weekend. I am sorry if these writings seem to dark sometimes. I realize this blog is far from everyone's thing - but it is real, and honest and mine. You might wonder where the light is in this one sometimes - well the light is always gonna be the love. Sounds hokey but it's true. Thank you for joining me here.
Hugs
ReplyDeleteHugs back at you.
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