C'est La Vie
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What a beautiful piece of heartache this has all turned out to be. Lord knows we've learned the hard way all about healthy apathy. And I use these words pretty loosely. There's so much more to life than words..
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Monday, June 04, 2001
The sign read "Ohio: 3 miles". A few minutes later, I crossed into the state of Ohio for the first time in my life, over three years too late.
I was driving from my home to Illinois to attend Cornerstone Music Festival, which was a good 15 hour drive. Since I was driving alone and had only just gotten my license and first car (both of which I got when 19), I decided to take a little detour in Ohio and stay at a friend's house. I'd've had to drive through Ohio anyway, but I've looked forward to my first time there for far too long to just pass through. As I mentioned, I was driving by myself. I had some music on, but that's never stopped me from thinking a whole lot, and driving seemed to bring that out in me even more than usual. I had about an hour and fifteen minutes after crossing the Ohio border before arriving at my friend's house, so I had a lot of time to think. And to cry. I was 13 when I really got online, several years ago. It was shortly before my 14th birthday that I found a niche in a little group on a Compuserv forum. Sometime before or right after my 14th birthday, I became friends with a guy there named Brian. After I'd known him for, perhaps, 5 months, he told me that he had Muscular Dystrophy. His particular type was Duchenne's, which is a relatively quickly-progressive disease that will take a perfectly normal kid in his youth and start limiting the funtioning of his muscles from his legs up. By the time he's 12-15, he'll be in a wheelchair, and likely won't live past 25. (The oldest then-currently living guy Brian knew of was 32.) Brian was in his early 20s. We became very good friends throughout the next year that we both had Compuserv. We talked about possibly meeting at various points, but I was living in FL, and that's a long way from Ohio to a kid that can't drive herself anywhere. Online, Brian had legs and could do all sorts of things that he couldn't REALLY do. We danced, we ran around, he "joined" me in the 5K road races and cross-country runs I really did do at the time. We said that if we ever did meet, we really would dance, somehow. It would be awkward, of course, because wheelchairs just can't move the way legs can, but that was what we had decided we would do. Maybe ballroom, we said, or perhaps Shag. That was before Swing dancing had gotten popular, and I didn't know there would ever be a popular way of dancing I'd actually like. We hoped that somehow they'd find a cure for DMD. At any rate, I moved to CA when I was 16, and Brian and I were still friends. There came a time while I was out there that I didn't get to get online very much, and hardly ever got to use the chat programs that we had used (such as ICQ) after getting rid of Compuserv. We still did email eachother, but not as often as before. It was hard for him, because by that time his arms were not so functional, and we both knew too well that it was only a matter of time before the disease would get to the muscles in his brain or heart and he would .. yah. When I was almost 17, I ended up in foster care for three months (mid-january through Easter). At school a few days after going into foster care, I emailed Brian (whom I hadn't heard from in a while) to let him know what happened and that my computer usage would become even more scarce. A week or so later I wrote him a long letter (on paper, even) and mailed him that along with a school picture from that year. A month or so later, I hadn't gotten a reply to either, and started worrying. In an attempt to calm down about it, I looked for his old website, which was still running, though it hadn't been updated since he had to start using the voice controlled computer programs when his hands stopped working. I emailed him again. At Easter that year, I moved back to FL. I emailed him when I got there. The email was bounced back to me. At some point in the whole journey, he had "introduced" me to a friend of his with a different kind of Muscular Dystrophy (one that wasn't so fatal) named Joe. Joe and I had exchanged a few emails as well, and I figured that he (as a close friend of Brian's family, and the co-worker with Brian on a web-based support group and other such resources of MD patients and their loved ones) would probably know what was going on. I emailed him asking if Brian was ok, and he replied. Brian had passed away about 6 months before, probably just before I went into foster care. We had shared so many stories and jokes and memories. We had had so much in common, probably more than myself and anyone else in that forum's group, some of whom I still have contact with. We had been very close friends, and had wanted so much to meet on earth. I'll have to wait 'till Heaven. In some eternal way, we've already met and are in the midst of praising our Jesus together right now, face to face with eachother and with our Saviour. But I finally made it to Ohio, two years too late. The entire time that I was in Ohio (for a day and a half, over a span of two nights) I looked at everything through the memory of the fact that that was where Brian lived. Well, not quite, since he was from Cinci and I was in Akron, but even so. It's been almost a year since that trip to Ohio. I was at my former roommate's wedding Saturday, and was talking to a friend of hers who has some use of his legs, but not quite the use most of us take for granted. He mentioned at some point in our conversation that the one thing that he considered unfortunate about his handicap (he used the phrase, folks.. I tend to stay away from it) was that he couldn't dance much, or the way he wanted. Boy did the memories of Brian and of our talk of dancing together flood my mind. Many people cry at a wedding, but usually out of joy seeing the happy couple get married. Watching my former roommate and her husband (a wonderful guy) say their vows almost did get me, especially when she turned enough that I could see her face. She didn't cry, but she sure came close enough. Talking about Brian, though, brought tears to my eyes. I don't think very many people knew how wonderful he was .. ironic in a way, since he was somewhat of an outcast in "real life" because of the metal accessory he was bound to keep with him, and an outcast online for who knows what reason. Plenty of people knew he had MD, but surely no one feels that it's contagious online, and most people (including myself) didn't really remember that part about him when not actually talking about it. It wasn't who he was, it was just part of how he lived. And then, how he died. Apart from my grandmother's recent passing, and my dog that passed away actually within a few months of when I met Brian, his (Brian's) death was the greatest loss I've faced in my memory. Anything more traumatic has been blocked out. Brian, I look forward to when the time-bound me is freed from time, and the wheelchair-bound you (having been freed from your wheelchair) can spend an eternity dancing for joy at our Salvation.
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Hippie: (after hearing Max wants to avoid the draft)You still have options man. "So how do i do normal "It's been known for a train to jump its track. It's ok, so you'll know, most times they come back. It's ok to lose your life, when you finally see your birth. It's ok to say, "I love you," and figure sometimes it's gonna hurt. "As a comedian, you have to start the show strong and you have end the show strong. Those are the two key elements. You can't be like pancakes, all exciting at first, but then by the end you're sick of 'em!" "Hey, this is weird! I ordered one frozen yogurt and they gave me two. You don't happen to like frozen yogurt, do you?" "I love it!" "You're kidding! What a crazy random happenstance!" "Only one more trip," said a gallant seaman, "It was Flannery O'Connor who said that 'grace must wound before it heals.' Her words help me to separate what is most true about life from the things we want to be true. We want life to be painless. True grace is a hard sell because in order for the human heart to understand forgiveness and love, it must first experience darkness and isolation. A life lived under the rule of grace is a life of need which allows us to receive an appreciate the gift of the giver of grace. This is why we will always have the poor with us; this is why God will not allow us to ignore injustice; this is why we are called to a life we cannot handle alone, which can and will break us in the effort to live it -- because grace must wound before it heals." Regarding 2007: Should auld acquaintance be forgot, I thought Christmas Day would never come. But it's here at last, so Mom and Dad, the waiting's finally done. And you gotta get up, you gotta get up, you gotta get up, it's Christmas morning. O little town of Bethlehem, Walk humbly, son Strings of lights above the bed "In a little while I'll feel better "Please tell me once again that You love me. That You love me. Please tell me once again that I matter to You and You really care. Please tell me once again that You're with me, forever. It's not that I could ever doubt you, I just love the way it sounds. I just love the way it sounds." "Every once in a while, a bannerzen posts." "7:30. What kind of people have to be at work at 7:30?" have you seen my love Traveling is significant because it takes so much effort. Either you're going to some place you love, or you're leaving some place you love. Usually it's both. I think I have Bond's ability to get into trouble but not his ability to get out of it. Someday I'll be in some foreign country with 5 thugs with automatic rifles pointed at me, and I'll just.... fart "You had no alternative .. We must work in the world. The world is thus." --- "No .. Thus have we made the world." The summer ends and we wonder where we are And there you go, my friends, with your boxes in your car And you both look so young And last night was hard, you said You packed up every room And then you cried and went to bed But today you closed the door and said "We have to get a move on. It's just that time of year when we push ourselves ahead, We push ourselves ahead." Looking out the bedroom at this snowy TV.. ever since commencement, no one's asking 'bout me. But I bet before the night falls, I could catch the late bus.. take small provisions and this Beethoven bust. I could find work in the outskirts of the city, eat some fish on the way.. befriend an old dog for a roadside pal, find a nice couch to stay -- a pull-out sofa, if you please!" Ooh! Get me away from here I'm dying "The trouble with folks like Brownie is they hold their life in like a bakebean fart at a Baptist cookout and only let it slip out sideways a little at a time when they think there's nobody noticing. Now that's the last thing on earth the Almighty intended. He intended all the life a man's got inside him, he should live it out just as free and strong and natural as a bird." "Life is a phantasmagoria .. It is a pell-mell of confused and tumultuous scenes. We try in vain to find a purpose - to bring an order, a unity to life. I suppose that is the appeal of art. Art is the blending of the real and the unreal, the conquering of nature. It is real enough for it to reflect life, but has the unity that life lacks." "in time memories fade. I've always had this feeling about Patty that she's complex and intriguing...I like Patty alot. She's got a good heart and tells terrible squirrel jokes. "Try to remember that world-weariness isn't necessarily a bad thing. In the book of Mark, I think its Mark, Jesus looks at a blind man and sighs. Jesus sighed before even telling the man he would be healed. He sighed, and I'm not sure that there's a much more human expression of frustration than this. Faced with the horrid picture of a cursed earth and looking into the white eyes of a man blind from the day he was born, He sighed. The Creator of the universe in human form was sad "of the evils of this world," the world He created. Your Creator sighed for you in the same way before He healed you and made you His." After the last secret's told After the last bullet tears through flesh and bone After the last child starves And the last girl walks the boulevard After the last year that's just too hard There is love -- Andrew Peterson, After the Last Tear Falls "when you most need people, you don't need perfection - just to know someone gives a damn" "A CALL TO ACTION: "My brother's always [telling me], 'You should be more mysterious--boys like that.' But I'm not good at that. It would just make me more uncomfortable." "Loners want to kill you, but not for any particular reason, and they'd probably like you if they weren't being guided by the violent voices in their head." "No one wants to oil a snake these days!"
-- Her mom: "We're all safe." -- Jamie Bevill and her mother during Christmas-Decorating dinner, December 20, 2002 i'd throw out all my shoes i'd set up cans for friends to dump their shoes senseless shoes a pioneer of callouses lordy-be and bless my soul i'd be a barefoot spaceman the first you'd ever know" "The best way to have God's will for your life is to have no will of your own!" "Generations circle and each one atones. The sins of the father are seperate from my own. In Pilgrim's Progress, it's forgiveness that makes whole, and as time levels and consoles, I place the daisies in your bowl." "For a moment he just stared at her. Then, with an urf-urf-urf of laughter, he turned back to the controls." "It's on the internet.. so, then, it must be true." "Be at least as interested in what people can become as you are in what they have been." Blessed be the rock stars!" Get up for the shower.. wash and scrub and scour every part as if a cleaner man could better bear the shame.. "She was eating gnarly amounts of calcium." Homeless man to girl trying to give him money: "No, thanks, ma'am. I never work on Sundays." "Wow! I never thought I'd need a radar-guided spatula!" "Isn't it great that I articulate? Isn't it grand that you can understand? ... I can talk, I can talk, I can talk!" I believe that people laugh at coincidence as a way of relegating it to the realm of the absurd and of therefore not having to take seriously the possibility that there is a lot more going on in our lives than we either know or care to know... I suspect that part of it, anyway, is that every once and so often we hear a whisper from the wings that goes something like this: "You've turned up in the right place at the right time. You're doing fine. Don't ever think that you've been forgotten. When I lay these questions before God I get no answer. But a rather special sort of "No answer." It is not the locked door. It is more like a silent, certainly not uncompassionate, gaze. As though He shook His head not in refusal but waiving the question. Like, "Peace, child; you don't understand." CCM: You've spoken a lot more about crying than I ever thought you would. "Youth is not a period of time. It is a state of mind, a result of the will, a quality of the imagination, a victory of courage over timidity, of the taste for adventure over the love of comfort. A man doesn't grow old because he has lived a certain number of years. A man grows old when he deserts his ideal. The years may wrinkle his skin, but deserting his ideal wrinkles his soul. Preoccuptaions, fears, doubts, and despair are the enemies which slowly bow us toward earth and turn us into dust before death. You will remain young as long as you are open to what is beautiful, good, and great; receptive to the messages of other men and women, of nature and of God. If one day you should become bitter, pessimistic, and gnawed by despair, may God have mercy on your old man's soul." ""Don't go matchmaking for me, Ilse," said Emily wit a faint smile... "I feel in my bones that I shall achieve old-maidenhood, which is an entirely different thing from having old-maidenhood thrust upon you." "I wish Aunt Elizabeth would let me go to Shrewsbury, but I fear she never will. She feels she can't trust me out of her sight because my mother eloped. But she need not be afraid I will ever elope. I have made up my mind that I will never marry. I shall be wedded to my art" "Tomorrow seems like a long ways away. But it will come, just like any other day... Deep inside, where the wounded creatures hide, I am afraid. Maybe I got lost somewhere along the way somehow. Please rescue me... Yea, though I walk through the valley of the dark shadow of death, I will fear no evil. For you are with me... Though I fear, though I am afraid, You are with me. Though I'm angry, tired, broken down and confused, You are with me. Though I sin like I've never sinned before, lose myself right out an open door, You are with me." "The invisible people agreed about everything. Indeed most of their remarks were the sort it would not be easy to disagree with: "What I always say is, when a chap's hungry, he likes some victuals," or "Getting dark now; always does at night," or even "Ah, you've come over the water. Powerful wet stuff, ain't it?"" -- C. S. Lewis, The Voyage of the Dawn Treader "When People object... that if Jesus was God as well as Man, then He had an unfair advantage which deprives Him for them of all value, it seems to me as if a man struggling in the water should refuse a rope thrown to him by another who had one foot on the bank, saying, "Oh but you had an unfair advantage." It is because of His advantage that He can help." "But, you know, as a Christian, one of the big questions you always ask yourself is, "So we believe in Jesus, we believe in the teachings of the church, but what does that look like when it's lived out?" Because surely, one of the things that Jesus said that I think we often overlook is, "The person who hears my words and does them is like the wise man who built his house on the rock." He didn't say "the person who hears my words and thinks about 'em" or "whoever hears my words and agrees with it." But he said, "Whoever hears it and does it." "find that which gives you breath and grants you more to give "I have packed all my belongings. I don't belong here anymore. This pair of sandles, one pack to carry, this old guitar and this tattered old Bible. And I know I won't be afraid. 'cause I know, I know Home is where You are." "Open up your weepy eyes, everyone is dancing. Angels peer through sweet disguise, through a fire of cleansing. "Long hair, no hair; Everybody, everywhere:
Breathe Deep, breathe deep the Breath of God!" "You may be bruised and torn and broken, but
you're Mine!" "I don't deserve to speak, and they don't deserve
to hear it. It's makin' me believe that it's not
about me." "Kickin' against these goads sure did cut up my
feet. Didn't your hands get bloody as you washed
them clean?" "They say God blessed us with plenty. I say
you?re blessed with poverty. ?Cause you never
stop to wonder whether earth is just a little
better than the Land of the Free" "Computers will know everything in the 21st
century. They'll be like me in the 20th
century." |
