I wish I had something else to say.
I think I should have died in the hospital back in November.
Ever since then I've been getting steadily worse. Slowly but steadily. Making the 20 foot journey from where my bed is in the living room of my parent's house to the bathroom is now something I have to think ahead about to get my nerve up enough to risk the journey. Sometimes I have to go one way and just sit down for a while to recover before attempting the return trip.
While they were away on vacation for a week I went outside to get the mail (so it wouldn't pile up indicating that no one was home). That's about 25 feet. I have to think twice before going out to my room (30 feet) and all bet's are off if I have to leave the house for some reason.
That joy of looking forward to the new day has been gone for a few weeks now. Time isn't measured by the clock on the wall that is placed conveniently so that in my most comfortable sleeping position I can see it clearly all day and night. It's measured by the cycle of light and dark that comes through that skylight in the middle of the living room (which has been my bedroom since I came home from the hospital).
I fear going out because of the stress and physical toll. I hate being trapped in the house but even that hate is slowly disappearing. Most days recently I feel like I'm just waiting to die. I've become so accustomed to this infirmity that I can't recall what it felt like to walk around casually with the heaviest thought in my head being about nothing at all.
I know there are others, many others, who suffer more greatly than I do. And my friends do their best by humoring me and coming over to sit and chat.
And I know my parents are being the bravest of all watching their son die slowly in front of them with nothing to do about it except help me be more comfortable (which is a godly mercy I assure you). I really wish there was some way I could spare them this event. But I'm not suicidal (an even more cruel fate for them) and short of medical miracles this will be the course of my life until it has run its course.
I just don't see that light at the end of the tunnel anymore. And I'm pretty sure my eyes are still open.
Ever since then I've been getting steadily worse. Slowly but steadily. Making the 20 foot journey from where my bed is in the living room of my parent's house to the bathroom is now something I have to think ahead about to get my nerve up enough to risk the journey. Sometimes I have to go one way and just sit down for a while to recover before attempting the return trip.
While they were away on vacation for a week I went outside to get the mail (so it wouldn't pile up indicating that no one was home). That's about 25 feet. I have to think twice before going out to my room (30 feet) and all bet's are off if I have to leave the house for some reason.
That joy of looking forward to the new day has been gone for a few weeks now. Time isn't measured by the clock on the wall that is placed conveniently so that in my most comfortable sleeping position I can see it clearly all day and night. It's measured by the cycle of light and dark that comes through that skylight in the middle of the living room (which has been my bedroom since I came home from the hospital).
I fear going out because of the stress and physical toll. I hate being trapped in the house but even that hate is slowly disappearing. Most days recently I feel like I'm just waiting to die. I've become so accustomed to this infirmity that I can't recall what it felt like to walk around casually with the heaviest thought in my head being about nothing at all.
I know there are others, many others, who suffer more greatly than I do. And my friends do their best by humoring me and coming over to sit and chat.
And I know my parents are being the bravest of all watching their son die slowly in front of them with nothing to do about it except help me be more comfortable (which is a godly mercy I assure you). I really wish there was some way I could spare them this event. But I'm not suicidal (an even more cruel fate for them) and short of medical miracles this will be the course of my life until it has run its course.
I just don't see that light at the end of the tunnel anymore. And I'm pretty sure my eyes are still open.