One of the things I think about all the time.
I had a very bad time of it today. Ended up losing bowel control while we were at the store, with very unpleasant consequences. My dad was with me, and he was very patient and understanding, but I told him, if the rest of my life is like today, I don't want it. He did not offer an argument.
My parents are both at a stage in their life where most things are uncomfortable. I don't know how they stand it -- there is little better to look forward to. I have tried to avoid thinking about where the future is taking us, but there is no way of knowing for sure. Except we know it holds more pain and discomfort.
I myself have reached the point where every breath brings a measure of discomfort. It seems like this condition is lasting forever. I feel very impatient waiting for improvement. Whatever it is, it seems very slow in coming.
I think each day about the burden of life. It is a challenging thought. My little brother ended his life by his own hand, and it was the cause of measureless grief with all of us who loved and cared about him. I would not want to end things in that way.
In particular, it seems unfair to those who remain. At the very least, I am seeking a clean escape that will not leave a big mess behind for others to clean up. So far, short of throwing myself into a live volcano, or something similarly impractical or unavailable, I have not found an acceptable way out. I have to go on, since there is no good alternative.
I hope, too, when it comes time for me to meet with those who have gone before, that I can at least offer a good report of my life. That would be the most satisfying end of things for me. Short of that, I guess I will continue drawing breath as long as I am able. I hope all do the same.
6 comments:
Jim,
I think I wrote you about this before, but the Korean view of the world is that to exist is to suffer. They LIKE it. There's another old Korean saying that goes something like when you are young suffering is so important that one would pay money to get it. It's ironic, then, that those who suffer (or seem to suffer) most are those who are older and have experienced life enough to have earned some sort of reprieve. Alas, no reprieve seems in the offing.
Your blog is a testament to the good you can do and are doing. I look every day. I find your experiences helpful and enlightening and oddly encouraging and sometimes amusing. Always entertaining...:-)
I have found that the only thing that makes life even worth a little bit bearable is the thought that there are people like you and other family who love me and would do anything for me. Just like I love you and would do anything for you. Because endurance to the end is just that - endurance. There's no short cut. I mean, not really. The end will come, and we will be raised in eternal glory. I believe that with all my heart.
Jim, I love you. I love you so much. I need your experiences to help me be a better person. I know that you struggle with things physically, mentally, and emotionally that I cannot ever begin to understand. But you have always been a source of strength to me, and example of the kind of pure gold that comes from that refiner's fire.
We pray for you always. Hey, if my kids are praying for you, you know you are in good hands!
PEACE
billy
I'm sorry, Jim, but losing control of your bowels in public -- not as big a deal as you make of it. If you had killed someone while driving your vehicle which you're not quite in control of -- that would warrant serious soul-searching.
I get that you don't think I have much to say to you that's useful. Never mind that I've had 16 years dealing with problems like you describe -- the fear, the uncertainty, the anarchy of the injured brain and floundering body.
I spent yesterday morning waiting out my disabled daughter's rant against the universe then the evening turning her on her side so she wouldn't choke as she projectile vomitted her lunch. Then there were the two loads of laundry that had to be done at midnight, by-products of the episode. Last night I slept (or not) by her side to be sure she did not choke in the course of residual wretching and considered whether her earlier rage was the cause of her vomitting or something else caused both. I will spend today monitoring her condition, helping her regain equilibrium, and otherwise tending to her well-being rather than working on projects I had planned -- yearned -- to work on because looking after her today IS the project at hand. And hopefully, catching up on some sleep. Helping her solve her problems today will probably teach me something new.
BTW, yesterday was mild. It's been far, far worse. There were months where every night I was awakened by her throwing up her dinner on account of her suffering severe reflux, years of panic attacks and screaming and terrifying illness. Years I was completely bound to her circumstances and needs. I've been up to my elbows in all kinds of bodily fluids and excretions. So have my husband and my kids. I look forward to my other two children leaving home so they'll get an idea of what it's like to live life without their sister's circumstances defining their space. Yet when they leave they'll be better versed in the human condition than I was at their ages and hopefully wiser people as a result. They'll be better educated in the matter of mortality as I now am at my age than I would have been had she not been born to me. In spite of everything I would have this life with her rather than a life without her.
Losing control of your bowels does mean something. It might be common for someone at your stage of recovery. It might be a side effect of medication. It might mean you have a mild virus. It might simply mean that you're trying to do more than you're ready for. It might mean that your expectations for how things ought to be are unreasonable under the circumstances. Ask somebody -- a therapist who has proven helpful, a doctor who seems to have some sense. Anybody who has already helped you cope with the changes you have faced and are facing. Find out what episodes and symptoms might actually mean. And pay attention yourself rather than diverting off energy and intelligence into Hamlet moments.
Feel free blow me off if you want to. You can publish this comment or not, whatever strikes your fancy. Like I said, what do I know, anyway, after only 16 years of living with someone with a severe brain injury.
Nothing, in comparison to what I have yet to learn.
Billy,
Your comments and your prayers are precious to me. Thanks for taking the time to respond. I hope you and yours weathered the hurricane okay. It must have been exciting and frightening. Life's experience teaches us -- if we just can manage to live long enough.
Patricia,
I am grateful that you have the time to read and respond. I gather that you have a lot of burdens to carry. I am sorry. Would that I could share some of it.
Losing control of my body is something that is new -- and frightening -- to me. Since the morning that I woke up to paralysis on my right side, the world seems very hostile to me. Believe me, I would not wish this great learning experience on anyone. There must be easier ways to learn. Perhaps I am too thick-headed to learn any other way.
Bowel control is something I just learned more about. It is an embarrassing, humiliating problem. I haven't had to deal with such issues for a long time. Not the worst thing in life, to be sure, but certainly right up there.
I do not presume to fathom the depth of care and compassion you volunteer to provide for invalid children. I weep for the unfairness of it all, but you surely earn some kind of reward for your diligence. My own parents provide for me, right now. I know it is a burden I never can repay.
For us as adults, we must retain some sense of personal dignity and pride. This loss is what I mourn. I have been down a road that forces me to be more dependant upon the good will of others. This is as foreign and frightening to me as anything I ever experienced. I can see how feeble and frail my life is, from a new and terrible perspective. I guess you could say I see reality revealed -- and it doesn't look very attractive.
Patricia,
I haste to add the sense that I do honestly appreciate what you share, what you think. Please do not think I do not value your remarks. Life is frustrating enough without feeling unappreciated. You are obviously involved in an important work. I admire such effort and dedication.
Jim,
What I carry are not a lot of burdens but a lot of hard work. It's just hard work, and I try to do it. I try to puzzle out what to do, maintain vigilance when necessary, pray for the occasional inspiration I feel I have the right to when I find myself in a tight spot (inspiration that usually comes). As you say, I would not wish this "great learning experience" on anyone, either. But here it is, it has taken me to the edge of my known universe, and by golly, I'm going to see what's out there.
You said, "For us as adults, we must retain some sense of personal dignity and pride. This loss is what I mourn."
You must mourn this loss as well as the loss of other expectations you held about how your life ought to be. But I don't believe that we must retain, as you say, some sense of personal dignity and pride. What dignity and pride are good for, you're now finding out -- they set you up for prolonged misery, and the longer you struggle to hold on to them the more miserable they'll make you. I don't know where people get the idea that they must retain personal dignity and pride when scripture and the best and most profound human experiences suggest the opposite is true. Dignity and pride must be shed if we want to get anywhere at all in this life, especially where the injured life is concerned, especially if we want to be healed.
You said, "I can see how feeble and frail my life is, from a new and terrible perspective. I guess you could say I see reality revealed -- and it doesn't look very attractive."
Darn it, Jim, what you're seeing isn't reality. It's the bothersome ghost of your own ideas about life. But the ghost of your ideas about life isn't your life itself. That's what this stroke and its longer views have revealed to you, the wrongness of your ideas about life, not the nature of life itself. You can while away the time trying to hold on to that ghost. But there is a whole different world beyond it. You have to work to get through to that world, though.
I'm out of time for now. My daughter's better but not entirely back on her game and I need to return my attention to her. I'm not talking to you like this out of pity nor am I comiserating with you or condescending to you. I'm speaking across to you, one survivor of a catastophe to another. That's right -- you survived. Now it's time to figure out how to do better than just survive. I know you have a creative streak, sir. Find it again and mine it.
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