I can only imagine.
For the last year, I've been incredibly hesitant to post anything to my blog. Since I've started this journey however many moons ago, this forum has been an exercise in healthy emotional and mental purging; an exercise in embracing my feelings, feeling them to the fullest, and then moving the fuck on. But in the last year, I have found a sense of guardedness that has made me reluctant to expose myself. While I've continued to share most of myself with my close friends, I've been unwilling to spread my experiences beyond that. I just haven't been able to wrap my mind around some of the changes I have been undergoing personally and in my relationships this last year.
Then I watched Gleason the other night and a wave of emotion overtook me. Now, I probably should have known watching a movie about a man with ALS shortly after what would have been my dad's 65th birthday was not my best decision, but I think part of me wanted to go down that rabbit hole. And down the hole I fell.
Watching Gleason was the first time I ever truly thought about how terrified my father must have been when he got his diagnosis. Watching Steve feel his disease progress, realizing his last speaking days were near, realizing he was going to miss out on his sons life, watching the pain and fear wash over him, just made my think about what those realizations must have felt like for my own dad. A man that was incredibly active was going to lose control over his entire body. A man that had four daughters, two of whom were still in elementary and middle school, was going to miss out on their entire lives A man that had a wife, who was largely financially dependent on him because they made the choice for her to stay at home with their children, was going to leave her behind to carry their family on.
I can only imagine the fear he felt when his tongue started feeling heavy or when his arm felt fatigued constantly. I can only imagine the paralysis he must have felt when he researched what it would look like as his disease progressed, as he saw other people farther along, when he realized that every step he took or every move he made would only further the progression of his disease. I can only imagine what it would be like to have death slowly overtake your body while your mind is trying to process every moment happening around you. I can only imagine the sadness he felt when he realized he would never see us start our careers or find our lifelong partners or become parents; hell, when he realized he would never see half of us graduate from high school. I can only imagine the pain he felt.
And I am sure he thought he had time. Time to impart wisdom to us. Time to soak up. Time to show us how much he loved us all. Time to fish again. Time to bask in the sun. Time to make the most of things. Time to say goodbye. Time to squeeze everything that he should have had fifty years to do into the two years he was given instead.
But then he fell.
And then he didn't even have that time.
I've always felt thankful, for my fathers sake and also for our own, that he had his accident and never had to live out the tragedy of ALS. That for his own sake, he got to be preserved in people's memory as the man they knew and loved rather than the man overtook by this disease. But watching Gleason made me realize how much we all missed out on being robbed by those last moments together. I don't think there can ever by a goodbye sufficient enough for a love that big, but any goodbye would have been better than what we had. I wonder what advice my dad would have given me if he knew he only had a day left to live. I wonder what he would have shared with me about life. Or maybe he would have just said 'I love you', and that would have said it all.
Dwelling on it is a fruitless exercise. But watching Gleason made me feel a connection to my father that I haven't felt in a long time. It gave me the opportunity to learn something new about my dad even after all these years.
And for that I am thankful.
Then I watched Gleason the other night and a wave of emotion overtook me. Now, I probably should have known watching a movie about a man with ALS shortly after what would have been my dad's 65th birthday was not my best decision, but I think part of me wanted to go down that rabbit hole. And down the hole I fell.
Watching Gleason was the first time I ever truly thought about how terrified my father must have been when he got his diagnosis. Watching Steve feel his disease progress, realizing his last speaking days were near, realizing he was going to miss out on his sons life, watching the pain and fear wash over him, just made my think about what those realizations must have felt like for my own dad. A man that was incredibly active was going to lose control over his entire body. A man that had four daughters, two of whom were still in elementary and middle school, was going to miss out on their entire lives A man that had a wife, who was largely financially dependent on him because they made the choice for her to stay at home with their children, was going to leave her behind to carry their family on.
I can only imagine the fear he felt when his tongue started feeling heavy or when his arm felt fatigued constantly. I can only imagine the paralysis he must have felt when he researched what it would look like as his disease progressed, as he saw other people farther along, when he realized that every step he took or every move he made would only further the progression of his disease. I can only imagine what it would be like to have death slowly overtake your body while your mind is trying to process every moment happening around you. I can only imagine the sadness he felt when he realized he would never see us start our careers or find our lifelong partners or become parents; hell, when he realized he would never see half of us graduate from high school. I can only imagine the pain he felt.
And I am sure he thought he had time. Time to impart wisdom to us. Time to soak up. Time to show us how much he loved us all. Time to fish again. Time to bask in the sun. Time to make the most of things. Time to say goodbye. Time to squeeze everything that he should have had fifty years to do into the two years he was given instead.
But then he fell.
And then he didn't even have that time.
I've always felt thankful, for my fathers sake and also for our own, that he had his accident and never had to live out the tragedy of ALS. That for his own sake, he got to be preserved in people's memory as the man they knew and loved rather than the man overtook by this disease. But watching Gleason made me realize how much we all missed out on being robbed by those last moments together. I don't think there can ever by a goodbye sufficient enough for a love that big, but any goodbye would have been better than what we had. I wonder what advice my dad would have given me if he knew he only had a day left to live. I wonder what he would have shared with me about life. Or maybe he would have just said 'I love you', and that would have said it all.
Dwelling on it is a fruitless exercise. But watching Gleason made me feel a connection to my father that I haven't felt in a long time. It gave me the opportunity to learn something new about my dad even after all these years.
And for that I am thankful.
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