I've been living with End Stage Renal Disease for so long, sometimes even I forget the severity of my condition. It's been 15, almost 16 years since I was wheeled into an ER at age 24 and told that my kidneys were no longer functioning. I was basically a bewildered child at the time; unable to process the information that without dialysis or a transplant, I would surely and most definitely perish.
That's a lot to hit anyone in a moment. People grapple with this kind of info everyday, though. Sadly, I'm just another number in a population of people who are told they are chronically (and often fatally) ill.
I've managed to carve out a life for myself in the aftermath; I can tell you that my plans for myself were quite different before I became a kidney patient, but even I can't say what life would have been like. What happened to me defined the path I've gone on, and for better or for worse, it has been an adventure. I quite like a lot of my life; most of the things that I hate are related to my health problems. I've been blessed with a cadre of friends, the most wonderful family, and a spouse who is amazing in so many senses.
But it's all wearing on me. At 40, I'm feeling the weight of life a bit more heavy than I did at 24. I have responsibilities now; my kids and my wife. I think 90% of my day is spent thinking about how I can help and benefit them, at least for the time that I'm here. It's hard for someone who is chronically ill to not view themselves as a lodestone, dragging down everything good around them. It's also hard not to get in your own head about it.
I'm trying to get back in touch with the things I love about life: music, art, books, conversations, laughter, adventure... stepping outside of the comfortable places that we tend to cling to, especially when things get hard. It is difficult, though, as I have less and less to give of myself at this moment. I'm so tired all the time. My mind is... foggy. I used to think of myself as somewhat quick-witted and occasionally clever, but now I feel like my thoughts are dragged through a lake of molasses before they can even reach my vocal chords. I stumble over finding the right words to say. Living life in this manner is extremely difficult for me. I feel like I'm letting down the people in my world.
I think even I have a way of pretending that it's not as bad as it is. Death is an actual possible outcome here, and I can't pretend like it's not. I can't let others around me pretend it's not either. I read today about people who died because they couldn't get dialysis treatments in the aftermath of a hurricane. That could easily be me.
I know I'll be back on dialysis soon. Hopefully soon we also get results of the further testing on my wife. Maybe then we can set up a surgery for a transplant. If something happens that prevents her from donating for health reasons, I would never be mad at her. I'd do my best to go on, doing dialysis as long as I can until we can find another kidney or maybe I'd get another miracle call.
I've already received too many miracles for this lifetime. There's a part of me that feels like my ticket is all punched; I've run out of favor. But who knows? I want to be here longer - I've got too much love to give to my family yet.
As I write this, my son walked over to me, and asked to hold my hand. He wants to take me somewhere and show me something. I want to follow him for years; I know he's got a lot to teach me and I have so much to teach him.
Stay kind out there. I'm trying to learn from my mistakes and be better, not only for myself, but for the world too.
That's a lot to hit anyone in a moment. People grapple with this kind of info everyday, though. Sadly, I'm just another number in a population of people who are told they are chronically (and often fatally) ill.
I've managed to carve out a life for myself in the aftermath; I can tell you that my plans for myself were quite different before I became a kidney patient, but even I can't say what life would have been like. What happened to me defined the path I've gone on, and for better or for worse, it has been an adventure. I quite like a lot of my life; most of the things that I hate are related to my health problems. I've been blessed with a cadre of friends, the most wonderful family, and a spouse who is amazing in so many senses.
But it's all wearing on me. At 40, I'm feeling the weight of life a bit more heavy than I did at 24. I have responsibilities now; my kids and my wife. I think 90% of my day is spent thinking about how I can help and benefit them, at least for the time that I'm here. It's hard for someone who is chronically ill to not view themselves as a lodestone, dragging down everything good around them. It's also hard not to get in your own head about it.
I'm trying to get back in touch with the things I love about life: music, art, books, conversations, laughter, adventure... stepping outside of the comfortable places that we tend to cling to, especially when things get hard. It is difficult, though, as I have less and less to give of myself at this moment. I'm so tired all the time. My mind is... foggy. I used to think of myself as somewhat quick-witted and occasionally clever, but now I feel like my thoughts are dragged through a lake of molasses before they can even reach my vocal chords. I stumble over finding the right words to say. Living life in this manner is extremely difficult for me. I feel like I'm letting down the people in my world.
I think even I have a way of pretending that it's not as bad as it is. Death is an actual possible outcome here, and I can't pretend like it's not. I can't let others around me pretend it's not either. I read today about people who died because they couldn't get dialysis treatments in the aftermath of a hurricane. That could easily be me.
I know I'll be back on dialysis soon. Hopefully soon we also get results of the further testing on my wife. Maybe then we can set up a surgery for a transplant. If something happens that prevents her from donating for health reasons, I would never be mad at her. I'd do my best to go on, doing dialysis as long as I can until we can find another kidney or maybe I'd get another miracle call.
I've already received too many miracles for this lifetime. There's a part of me that feels like my ticket is all punched; I've run out of favor. But who knows? I want to be here longer - I've got too much love to give to my family yet.
As I write this, my son walked over to me, and asked to hold my hand. He wants to take me somewhere and show me something. I want to follow him for years; I know he's got a lot to teach me and I have so much to teach him.
Stay kind out there. I'm trying to learn from my mistakes and be better, not only for myself, but for the world too.
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