From the very start, I made no attempt to hide my reasons for writing this blog. I wanted to get the word out about what my symptoms are like. I warned you that things could be graphic and even disgusting though I'd attempt to screen out the worst of it. I am not going to find it easy to protect your gag reflexes. My original intent was to err on the side of informing you over protecting you. This slipped some over time as I tried to be less of a whiner, etc. It helped a lot when my medication caught up to my symptoms. Even now, with what I am going to tell you, I am a happy person leading a good life. At the moment, I'm enjoying a bit of a break from the worst of my newest symptoms. My pain medicine is helping make the pain manageable for now and for now is all anyone can ask.
Earlier today, I enjoyed a couple of action movies featuring giant manned robots fighting to save humanity which is one of my favorite movie genres. Outnumbered humans made a last stand against the aliens with giant fists, swords, glowing energy weapons and our sheer will to survive. Mostly, they won because they refused to give up. I'm not giving up either. I'm not drawing a line in the sand and yelling slogans like, "No retreat!" I may be forced to retreat and make choices about what recently reclaimed part of my life needs to be surrendered to save the rest in metaphorical terms, of course.
The latest development is crippling intense pain in my legs. At the moment, I must endure a ten on the pain scale to climb up or down the stairs much of the time. I suppose I can be grateful for having given up on using my bedroom since I sleep better in a recliner anyway. On the other hand, the bathroom is a problem. Everything about the need to use that second floor bathroom is approaching a crisis. Through most of the day, I have had to clench my teeth trying to avoid crying out in pain on the stairs. Shifting my weight to prevent falls has been the worst as I've held on to the railing for dear life despite knowing it will not take my weight in a sudden fall. Despite being barefoot on a nice soft rug, I feel like an athlete trying to make a sudden horizontal cut and getting my cleats stuck a little. It's not my hamstrings or my quads since I know what those feel like.
That's the inside of my leg and the part that's only disgusting by implication. After months of not making it to the bathroom consistently and this is a big deal to someone is incontinent already, I have large open sores in various states of infection or something. I can't really be sure about infection unless pus is involved and there is no pus here. Such is the state of how I feel that a lack of pus feels like a victory. Also the swelling has gone down from a few weeks ago.
I hate the fact that I cannot find a reasonable solution that doesn't involve massive changes. The only medium/long term solution that makes any sense to me would involve moving to a single floor home somewhere and installing a walk-in bathtub/shower. This would be hopelessly complicated and would require a force of will that I lack at the moment. I'm also one of those people who consider my cats to be members of the family as important as I am. Therefore, a first floor apartment would likely be out of reach due to the size of my furry family.
On the other hand, I'd like to keep my health in a state where I'm not seriously worried about losing my legs or my life. As any Zipperhead knows, things can improve over time with work but they sure can get worse a lot faster. You'd think I'd be panicking by now but I'm not. I have a good life, a great wife, great kitties and so I can enjoy each day as it comes along.
Monday, September 5, 2016
Saturday, September 3, 2016
Whatever Gets You Through Whatever
Though I'm trying to work on silver linings, I was feeling pretty out of sorts Saturday night until Melissa came home from work. That alone would have made me feel a bit better but she brought home ham salad and Cheez-Its for dinner. We also had crab salad left over for today and it was a wonderful experience that I would have tried to deny a few years ago when I was supposed to be ashamed of enjoying food as much as I do. Scooping some ham salad on one of my favorite cheese crackers was a delight. It wasn't even my favorite variety of ham salad flavored with savory mustard and pickle but ham salad is still ham salad. I got the desired saltiness and very minor crunch from the crackers and the combination was amazing. I would have preferred more of a crunch before most of my teeth broke off but I can still tolerate Cheez-Its. Ham salad and Cheez-Its are a delight separately but some things are just that much better together.
Would I be raving about the delights of ham salad and cheese crackers if I were healthy? I doubt it. As I mentioned above, I was taught to feel shame about enjoying food. Life is so much better without the shame. I can enjoy the combination of flavors found in the various varieties of ham salad and artificial cheese crackers without judging myself. It's okay to consider relief from pain to be a high form of pleasure.
I've been playing my way back and forth through the original "Fallout," a game released in 1997. Like almost all the games I like, it's turn based so my poor reflexes don't frustrate me and there are few stupid mistakes that can cause you to lose all at once. It's quirky with a sense of humor that might not appeal to some. The violence in the combat is cartoonish in its extremity. You can use a flamethrower and leave your enemy as nothing more than a blackened, overcooked skeleton or shatter a target into a bloody pulp from the waist up but my favorite has to be the alien weapons that melt targets down into pools of goo. It's kinda disgusting but I find it funny compared to the "flesh wounds" that do no damage at all.
The best bang for the buck is the $2.18 submarine game for my phone. The degree of difficulty is the most impressive thing about that game. Your sub's only defense is stealth so any armed ship will inflict major damage on you. I have yet to face a warship yet I've been forced to withdraw from attacks on commercial ships twice because of their puny deck guns. The sub wasn't sunk but the hull was so damaged the first time that my deck gun and all five torpedo tubes were too damaged to be used. On the second try, the merchant ship held me below the water too damaged to catch up for a torpedo shot. I got it on the third, fourth and fifth tries.
Madeline wants her dinner a few minutes early and she's been pretty well behaved today. I think I'll just give in for once. The kitties are fed and I'm starting to consider a nap seriously. Napping is one of those silver lining/black cloud situations. I don't like the need to nap but the ability to do so when it will help can be wonderful. I'll need to get current on today's medicine before daring to fall asleep. Waking up disoriented and in agony is something I'll take a pass on every day and twice on Sundays.
In today's world, a couple like Melissa and me just can't get ahead but that doesn't mean we have to be miserable about it. I've mentioned how I enjoy store brand, name brand and generic food the same almost all the time. Most of the time, the generic stuff might even be best because it's packed full of stuff like sugar instead of the finest ingredients available. My beer snobbery is one exception for sure. I drink cheapish whiskey if I want to dull pain and ease anxiety but beer - ales more specifically - are treats drunk solely for taste. Even the alcohol content in good beer has more to do with taste than anything else. Most high alcohol content comes from the aging process and, therefore, the alcohol picks up flavors from the barrels it ages in.
Nonetheless, I didn't intend to write about food and drink yet again. It's just a form of what might be the overall point. It's escapism that keeps me from resenting the wealthy and the knowledge that everyone has their own problems. It might not surprise you that wealthy people have their own problems but it surprised me each time I learned that a wealthy person is actually short on money all the time for reasons beyond their control. It might be safer to read books about wealthy people than to be wealthy.
Of course, I'm not talking about the mega-rich here. A large number of Americans strike me as rich because I've lived my adult life between the eright ball and the corner pocket. Most wealthy people in the US have most of their income tied up in investments especially the family home. If your home is valued at a couple hundred thousand dollars, chances are that you're paying an outrageous mortgage each month. Your wealth is more of a liability than an asset in practical terms. One mistake at work might be just as disastrous as it would be for someone with hardly any wealth.
Once again, that's not really the point. It's arguable whether or not I'd prefer that sort of anxiety to knowing that the pain will be there to greet me sometime soon. Maybe it's for lack of choice but I choose to read and re-read books about heroes and heroines dealing with other problems because money issues are out of the picture. I can't say for sure that I'd trade having someone trying to murder me for having a servant to clean up after me and bring me my favorite expensive beers when I ring the bell.
Things aren't easy all around so I enjoy my escapism and my very real blessings. It's almost enough to blow my mind that I am the only one lucky enough to have Melissa come home to me every night after work. The rest of you may love your spouses and partners - I hope so much that you do. - but I can assert with no exaggeration that I am the luckiest of us all. Nightmares may rock my world on a regular basis but Melissa is here to set things right again. No one else is quite so lucky.
Would I be raving about the delights of ham salad and cheese crackers if I were healthy? I doubt it. As I mentioned above, I was taught to feel shame about enjoying food. Life is so much better without the shame. I can enjoy the combination of flavors found in the various varieties of ham salad and artificial cheese crackers without judging myself. It's okay to consider relief from pain to be a high form of pleasure.
I've been playing my way back and forth through the original "Fallout," a game released in 1997. Like almost all the games I like, it's turn based so my poor reflexes don't frustrate me and there are few stupid mistakes that can cause you to lose all at once. It's quirky with a sense of humor that might not appeal to some. The violence in the combat is cartoonish in its extremity. You can use a flamethrower and leave your enemy as nothing more than a blackened, overcooked skeleton or shatter a target into a bloody pulp from the waist up but my favorite has to be the alien weapons that melt targets down into pools of goo. It's kinda disgusting but I find it funny compared to the "flesh wounds" that do no damage at all.
The best bang for the buck is the $2.18 submarine game for my phone. The degree of difficulty is the most impressive thing about that game. Your sub's only defense is stealth so any armed ship will inflict major damage on you. I have yet to face a warship yet I've been forced to withdraw from attacks on commercial ships twice because of their puny deck guns. The sub wasn't sunk but the hull was so damaged the first time that my deck gun and all five torpedo tubes were too damaged to be used. On the second try, the merchant ship held me below the water too damaged to catch up for a torpedo shot. I got it on the third, fourth and fifth tries.
Madeline wants her dinner a few minutes early and she's been pretty well behaved today. I think I'll just give in for once. The kitties are fed and I'm starting to consider a nap seriously. Napping is one of those silver lining/black cloud situations. I don't like the need to nap but the ability to do so when it will help can be wonderful. I'll need to get current on today's medicine before daring to fall asleep. Waking up disoriented and in agony is something I'll take a pass on every day and twice on Sundays.
In today's world, a couple like Melissa and me just can't get ahead but that doesn't mean we have to be miserable about it. I've mentioned how I enjoy store brand, name brand and generic food the same almost all the time. Most of the time, the generic stuff might even be best because it's packed full of stuff like sugar instead of the finest ingredients available. My beer snobbery is one exception for sure. I drink cheapish whiskey if I want to dull pain and ease anxiety but beer - ales more specifically - are treats drunk solely for taste. Even the alcohol content in good beer has more to do with taste than anything else. Most high alcohol content comes from the aging process and, therefore, the alcohol picks up flavors from the barrels it ages in.
Nonetheless, I didn't intend to write about food and drink yet again. It's just a form of what might be the overall point. It's escapism that keeps me from resenting the wealthy and the knowledge that everyone has their own problems. It might not surprise you that wealthy people have their own problems but it surprised me each time I learned that a wealthy person is actually short on money all the time for reasons beyond their control. It might be safer to read books about wealthy people than to be wealthy.
Of course, I'm not talking about the mega-rich here. A large number of Americans strike me as rich because I've lived my adult life between the eright ball and the corner pocket. Most wealthy people in the US have most of their income tied up in investments especially the family home. If your home is valued at a couple hundred thousand dollars, chances are that you're paying an outrageous mortgage each month. Your wealth is more of a liability than an asset in practical terms. One mistake at work might be just as disastrous as it would be for someone with hardly any wealth.
Once again, that's not really the point. It's arguable whether or not I'd prefer that sort of anxiety to knowing that the pain will be there to greet me sometime soon. Maybe it's for lack of choice but I choose to read and re-read books about heroes and heroines dealing with other problems because money issues are out of the picture. I can't say for sure that I'd trade having someone trying to murder me for having a servant to clean up after me and bring me my favorite expensive beers when I ring the bell.
Things aren't easy all around so I enjoy my escapism and my very real blessings. It's almost enough to blow my mind that I am the only one lucky enough to have Melissa come home to me every night after work. The rest of you may love your spouses and partners - I hope so much that you do. - but I can assert with no exaggeration that I am the luckiest of us all. Nightmares may rock my world on a regular basis but Melissa is here to set things right again. No one else is quite so lucky.
Thursday, August 25, 2016
More Silver Linings
This summer kicked my ass all too often so it's been a lot of negative from me. On one hand, it's only natural because Chiari sucks and so do all the secondary illnesses that might actually be worse than the Chiari many days. Thankfully, that's not my whole life. Once upon a time, I had to be the best student or I was wasting my time. Therefore, I was thrown in with the sharks - as in card sharks who are good at what they do - not the big tooth kind. That animosity has had time to go away.
When I got into more of a career situation, I learned that I was good enough at what I did. That was taken from me by the Chiari which became one of the biggest silver linings in my life. I hated my job not so much because of the pressure put on me but because I had to make someone cry on the phone nearly every day. Debt collection is a vicious business, credit card collections is that much worse and second chance credit card collections is the armpit of the universe where desk jobs are concerned. I wouldn't put it down with picking produce in the blazing sun but I think it's better to avoid looking down on people. Everyone who works for a living or struggles to make it without a job deserves respect.
All those years ago, I learned that it was the Chiari and not the job that was beating me up so badly. I couldn't rid myself of the Chiari symptoms so I had to give up the job. It was a shame that I had to give up my other jobs that I liked because of it but that was that. Instead of a relatively healthy bill collector or phone interviewer, I got to become the Chiarian Writer. The fact is that I write a lot more than I did while healthy at least since high school. High school hardly counts since most of that work was never meant to be read by another human being.
There is great pleasure to be found in sitting at my desk tapping away whether it is continued work on some old project I'm unlikely to finish or something new and exciting. It's a bit of a shame how I lost that sense of pleasure for a long time. For some reason, I bought into this lovely old frame of mind. I like to write. Are you any good at it? I doubt it. If you're not going to be elite, why bother? I enjoy it and it helps me if no one else. You'll never be any good at it and there is no other point.
That's when I find myself wishing that I could go back to my first kiss with Melissa or some other moment of glory. Instead of looking like I do, I'm tall, dark and handsome. I'm the sort of good looking that makes me difficult to trust yet the girls can't help themselves and that fantasy holds its appeal for a second and a half. I don't want to be like that even in a fantasy. The guy who is handicapped by his impossible good looks is the bad guy in my fiction. Somehow, pain and other forms of illness become external forces that can be beaten down.
Who cares if that obstacle in front seems insurmountable? The bigger they are, the harder they fall. It isn't like that in real life where big problems knock you down hard but getting knocked down is not the end of the world. There is almost always a silver lining even in extreme cases. I loved Grandmom and Pop Pop dearly when they were alive. After years or decades of suffering, they died and regained peace after so much stress. It's the greatest crisis that any of us can face and it's inevitable. We need to be ready for it while postponing it as long as possible. When the final crisis arrives, you get out of it what you put in just as with life.
When I do have to die eventually, I want to throw a big party and invite all the friends I've made in a lifetime. It won't be for me since I know how difficult it is to keep up with friends and loved ones while suffering a chronic illness in a relatively mild stage.The things I've experienced already have prepared me for what I'll want to do. There will be a main party in one room with music and dancing or "walker-ing" anyway. Time catches up with us all but it's no shame so long as we keep trying.
Shame is something on which I have wasted too much time and concern. I've lost a lot of writing time because I've worried about not being good enough. It's not always quite so complicated. My beloved asks me what I want for dinner and my natural tendency is to flip out. What about what she wants for dinner? I'm relearning that she asks when she wants my opinion for whatever reason. Eating is something that I enjoy a lot and I'm not a snob about most foods and drinks. I want a lot of flavor and I want to be full when I'm done. Since I'm in too much pain to carry out any sort of exercise programs, no one hassles me about what I eat. Would I choose being able to run and catch and throw and be able to play physical games like hockey over eating a lot? Maybe the true silver lining is not being able to choose
I think I skipped my point in that last paragraph. The thought that "bragging" about the silver linings in my life would anger everyone made it tough to open up about good things. How dare I enjoy all these good things when I haven't worked by fingers down to the proverbial bone earning them? I guess there should be two keys to understanding it all. One, I am enjoying myself to some degree most of the time. Two, someone out there, usually Melissa and the family, wants me to enjoy myself and has put effort into making it happen. I can't return their effort to the store so I have to return the shame somehow.
There are a lot of silver linings in all the black clouds I've been trying to teach others about. You won't find them every time and it can be exhausting to try. The key is to let it all happen. At some point, you'll find yourself happy for no good reason. Just roll with it since you know there will be tough times too.
When I got into more of a career situation, I learned that I was good enough at what I did. That was taken from me by the Chiari which became one of the biggest silver linings in my life. I hated my job not so much because of the pressure put on me but because I had to make someone cry on the phone nearly every day. Debt collection is a vicious business, credit card collections is that much worse and second chance credit card collections is the armpit of the universe where desk jobs are concerned. I wouldn't put it down with picking produce in the blazing sun but I think it's better to avoid looking down on people. Everyone who works for a living or struggles to make it without a job deserves respect.
All those years ago, I learned that it was the Chiari and not the job that was beating me up so badly. I couldn't rid myself of the Chiari symptoms so I had to give up the job. It was a shame that I had to give up my other jobs that I liked because of it but that was that. Instead of a relatively healthy bill collector or phone interviewer, I got to become the Chiarian Writer. The fact is that I write a lot more than I did while healthy at least since high school. High school hardly counts since most of that work was never meant to be read by another human being.
There is great pleasure to be found in sitting at my desk tapping away whether it is continued work on some old project I'm unlikely to finish or something new and exciting. It's a bit of a shame how I lost that sense of pleasure for a long time. For some reason, I bought into this lovely old frame of mind. I like to write. Are you any good at it? I doubt it. If you're not going to be elite, why bother? I enjoy it and it helps me if no one else. You'll never be any good at it and there is no other point.
That's when I find myself wishing that I could go back to my first kiss with Melissa or some other moment of glory. Instead of looking like I do, I'm tall, dark and handsome. I'm the sort of good looking that makes me difficult to trust yet the girls can't help themselves and that fantasy holds its appeal for a second and a half. I don't want to be like that even in a fantasy. The guy who is handicapped by his impossible good looks is the bad guy in my fiction. Somehow, pain and other forms of illness become external forces that can be beaten down.
Who cares if that obstacle in front seems insurmountable? The bigger they are, the harder they fall. It isn't like that in real life where big problems knock you down hard but getting knocked down is not the end of the world. There is almost always a silver lining even in extreme cases. I loved Grandmom and Pop Pop dearly when they were alive. After years or decades of suffering, they died and regained peace after so much stress. It's the greatest crisis that any of us can face and it's inevitable. We need to be ready for it while postponing it as long as possible. When the final crisis arrives, you get out of it what you put in just as with life.
When I do have to die eventually, I want to throw a big party and invite all the friends I've made in a lifetime. It won't be for me since I know how difficult it is to keep up with friends and loved ones while suffering a chronic illness in a relatively mild stage.The things I've experienced already have prepared me for what I'll want to do. There will be a main party in one room with music and dancing or "walker-ing" anyway. Time catches up with us all but it's no shame so long as we keep trying.
Shame is something on which I have wasted too much time and concern. I've lost a lot of writing time because I've worried about not being good enough. It's not always quite so complicated. My beloved asks me what I want for dinner and my natural tendency is to flip out. What about what she wants for dinner? I'm relearning that she asks when she wants my opinion for whatever reason. Eating is something that I enjoy a lot and I'm not a snob about most foods and drinks. I want a lot of flavor and I want to be full when I'm done. Since I'm in too much pain to carry out any sort of exercise programs, no one hassles me about what I eat. Would I choose being able to run and catch and throw and be able to play physical games like hockey over eating a lot? Maybe the true silver lining is not being able to choose
I think I skipped my point in that last paragraph. The thought that "bragging" about the silver linings in my life would anger everyone made it tough to open up about good things. How dare I enjoy all these good things when I haven't worked by fingers down to the proverbial bone earning them? I guess there should be two keys to understanding it all. One, I am enjoying myself to some degree most of the time. Two, someone out there, usually Melissa and the family, wants me to enjoy myself and has put effort into making it happen. I can't return their effort to the store so I have to return the shame somehow.
There are a lot of silver linings in all the black clouds I've been trying to teach others about. You won't find them every time and it can be exhausting to try. The key is to let it all happen. At some point, you'll find yourself happy for no good reason. Just roll with it since you know there will be tough times too.
Saturday, July 9, 2016
Hanging On Better Than Usual
Brian M. Murphy wrote on Facebook:
CHIARI sucks--it can kill you, it can destroy your body, it can ruin your personal life, it plays games with you, you are depressed and have to fight so hard everyday just to be alive--today I saw that a little girl died and another young boy left a note that scares the community--WE need help and understanding that this shit is real---
Brian is a leader among the Chiari communities on Facebook and elsewhere but I know him from Facebook. I've been getting my ass kicked by Chiari lately and the depression involved has been almost too much to bear. A former (I guess) friend decided that I complain about the whole condition too much on the same day that I decided to go looking for bright sides and silver linings again. It was considerably more difficult to get the ball rolling on that goal when someone I trusted decided to head for the exit and bail on me the same day.
Please don't call me a hypocrite because I recognize her right to bail. In fact, I believe it's all but inevitable with me. My beloved wife and New York family are the big exceptions to the rule. It has to be depressing as hell to deal with me too often because I can't help but react to the constant symptoms. They wear me down. Honestly, I feel like I should present any and all new friends with a liability waiver. "I know that you'll be fed up with me sooner or later and want to walk away. All I ask is that you say goodbye on your way out." This most recent person said goodbye which did make it easier. I have a lot of trouble giving up on people so I might have spent six months or a year wondering if a technical glitch was involved since I communicate through the net more than any other way. In the past, I might have asked for a detailed exit interview but I'll settle for a nice goodbye these days.
I'm not feeling bitter, though. When I was younger, the people I admired the most sat in comfy chairs and told me stories. What I wanted most out of life was a set of stories to tell my young relatives or my friends and their kids. I have the memories for stories now. My life has been interesting (by which I usually mean fucked up) to say the least already but you can't say that I haven't lived. Some of my stories were pretty terrible at the time but I can get a chuckle out of them now. I never expected to "wake up" to a State Trooper's authority voice shouting about sitting down and murmuring back, "I don't think I can." The EMT next to him assured me that just lying there would be fine. I can leave out the long string of mistakes I made that all added up to the big one. I drank WAY too much and wound up spending my overnight in the ER. By the time anyone is old enough to hear that story, I'll be sure to emphasize that I made the mistakes no matter who else contributed to them. I'll also emphasize that it wasn't worth it even before the well deserved ass chewing from my surprisingly understanding father. The real lesson was that I learned my lesson and ceased going to parties with the intent of drinking just a little less than it would take to pass out.
My favorite story is all about meeting Melissa for the second time and how that led to us getting married eventually. Our first meeting involved a bit of excessive honesty. I told her exactly what I thought of her boyfriend at the time. It was only partially my fault. The guy was full of himself. I'm not saying that I wasn't but he must have majored in it. It took me almost a month to figure out how jealous I was despite the fact that I was seeing someone at the time. She just wasn't Melissa. Thankfully, the first meeting was entirely online so she didn't recognize me when she returned to that gaming community. I'm sure you've heard Bruce sing "Dancing in the Dark." I didn't just change "my clothes, my hair [and] my face" but also my name and most of my personality.
That was a story that Chiari couldn't ruin. My symptoms started going about a month after the wedding and the diagnosis came shortly afterward. My sweetheart hardly ever complains much less threatens to walk out of my life. If I ever end up in paired up comfy chairs, I know who my partner will be. She'll even be the one to try and keep my stories to within arm's length of the truth.
I'm proud of the part of me that simply accepts that this is where I am in life and then goes from there though it gets me into trouble at times. If you ask me how I'm feeling, you might as well go skinny dipping in quicksand. The physical sensations that my body feels on any given day will include pain in several different varieties, dizziness that causes me to fall down on a regular basis and enjoyment of food and drink. I spent most of my life being told that I enjoyed food and drink too much so I was a glutton and doomed to suffer all of these illnesses that I now have. It has taken me a long time (or an infinite amount of time) to accept the findings of my doctors that my so called gluttony has little or nothing to do with the current state of my health.
One recent advance involves the fact that I enjoy the state of being between artificially relaxed and buzzed. I enjoy consuming alcohol and it helps me deal with my symptoms when combined with my other medication. It's not just a matter of pain. I do better at not hyperventilating as soon as I try to close my eyes and shut down my conscious thought. Without the alcohol, I will close my eyes and dream of conflict with my father within a minute of falling partially asleep. If I fall asleep more deeply without my "medicinals," I stand a good chance of having an involved dream of meeting friends, feeling as if I can breathe figuratively for the first time because I'm accepted and then realize that I'm doomed to return to that place where I am considered a failure. If I've had whiskey within the past four hours or so, I remember that I graduated from the University of Delaware in 2002, it is 2016 and no one has cause to accuse me of being an academic failure anymore.
(Gulp down that air! Seriously, you graduated more than 14 years ago when it looked like your symptoms would let you work again.) There has been no significant relief since then.and spending time around anyone but Melissa can cause me crippling pain and twitching. That and frustration over a phone that hardly ever works right keeps me from answering the phone all that often. It took a long time but I learned a basic concept involved in coping. Try to avoid doing things that I don't want to do when they are going to make me feel worse.
Right now, I would like to write this journal entry and finish it but I'm twitching hopelessly.
I've gotten a couple of hours of sleep in now and I feel much better for now. This is the sort of time that I don't write about very often since pretty much anyone without a disability can do this sorta thing. I have been playing some computer games during my light symptom days. The games that I choose are best when I take the time to look for certain important characteristics. For one, I like my games absolutely free. For another, I don't like to play ganes where eye/hand coordination plays a big role. Normally, that means I like turn based strategy games best but I've run into a few real time games that play to my strengths.
"Call of War" is a real time strategy game but it can take days of real time to gather the resources required to build the favtory and air field to be able to build a fighter plane. That would be a biplane fighter from the mid to late 1930s. It takes another week to get yourself a fighter that belongs in a game about the Second World War. With nations starting off with unpredictable strengths and weaknesses, you get the chance to do things that never happened in the real world. My game playing the UK started off with the invasion of Ireland because of their mineral resources. As the United States, I'm building a B-17 base in Dover, Delaware. In real life, Dover Air Force Base is a vital supply hub using the most advanced cargo planes and the Delaware Air National Guard helps defend US airspace. In "Call of War," I can do silly things like build and mass B-17s in Delaware because I don't have a kid who grew up with thumbs of lightning rubbiing my nose in the "mistake."
Of course, I continued writing through not as regularly as before. I can play "Call of War" or one of the others for a few minutes to set up the next 24 hours of action. Writing requires organized thought and dedication. You have to be dedicated to your own ideas so you can follow through. Other times, you have to be dedicated to the cause whatever the cause may me. I began this online journal as an attempt to write an account of chronic illness without the sugar coating. After 16 years, I'm not brave about it all anymore. On days when I'm in a lot of pain, I want to be sedated to that I can't feel the pain. On days with less pain, there's a great temptation to find sedation in order to feel like less of a failure.
So, how am I hanging on better than usual? Well, it's all about perception. I have always enjoyed myself here and there even on the worst days but it made me feel guilty. There are children going without food because their nutritional assistance programs are bound to actual school attentance. When school is out, the kids don't get the food. Last night, I ate takeout Chinese food which tasted wonderful. Whiskey and bubbly lemon flavored water tasted wonderful and helped numb me though the news of all the shootings. I see sadness and more sadness and I don't want anyone to be at fault. I want everyone to go home to their families.
I posted on Facebook how I don't see black lives, cop lives, white lives and so on. When a traffic stop where the driver complies with a polceman's orders results in him being shot after aid is withheld for 20 minutes, I see a terrible abundance of human tragedy. It's the same to me when a man pinned down by two cops gets shot for "resisting arrest" despite the fact that the gun used as an explanation never left his pocket. It's another human tragedy that makes me sad. Most of my post was devoted to the heroic cops who showed us both sides of their job that night. They got to be role models walking with the crowd of protesters and then they fought down the natural panic of an unseen threat killing your friends with you possibly being next. These cops were heroes who imposed the most order possible by finding safe havens for the civilians until they were able to hunt down the murderer and kill him after he refused to surrender..
After I posted this, an angry man claimed that I was another liberal (true) always defending the criminals (false). That's not a direct quote since I don't feel like hunting down a frustrating post written by an idiot - No! I must not judge. - written by someone who approves of police who make other police look bad. Yes, this me backsliding on the whole "better than usual" bit but I am letting the argument go faster than usual and trying to express it in non-personal terms. These deaths are not about me to the same degree that they are about others. I want to react in a demonstration of sympathy but I don't want anyone thinking I want someone to believe I want this to be all about me.
As for what Brian reported, I have a request to make of my fellow Chiarians and Zipperheads. I need you to hang on and deal with today's symptoms today. I want the privilege to sit at a bar table in the Old Chiarians' Home swapping stories. I was out of bed and walking around a very little bit on the same day when my second neurosurgeon had the anesthesia or sedation turned off and took the breathing tube out. When talking him up to a fellow Chiarian at some point in her pre-op workups, I mentioned that he was so good that I got out of bed the first day. I didn't know he was behind me at that moment and he clarified that I was out of bed the first day. I shouldn't have said anything because unreasonable expectations and Chiari don't mix well.
Anyway, we Chiarians need to stick to reasonable expectations. We need to manage the pain a day or even an hour at a time because prescriptions work better when we're less upset. If you hang on, I need to try matching you because I'm hyper-competitive. It can be dangerous when there's a storm approaching and my pain will keep getting worse until I rest and medicate. One is coming now so I think I'll post this. Let's all try to stay alive now.
I'm proud of the part of me that simply accepts that this is where I am in life and then goes from there though it gets me into trouble at times. If you ask me how I'm feeling, you might as well go skinny dipping in quicksand. The physical sensations that my body feels on any given day will include pain in several different varieties, dizziness that causes me to fall down on a regular basis and enjoyment of food and drink. I spent most of my life being told that I enjoyed food and drink too much so I was a glutton and doomed to suffer all of these illnesses that I now have. It has taken me a long time (or an infinite amount of time) to accept the findings of my doctors that my so called gluttony has little or nothing to do with the current state of my health.
One recent advance involves the fact that I enjoy the state of being between artificially relaxed and buzzed. I enjoy consuming alcohol and it helps me deal with my symptoms when combined with my other medication. It's not just a matter of pain. I do better at not hyperventilating as soon as I try to close my eyes and shut down my conscious thought. Without the alcohol, I will close my eyes and dream of conflict with my father within a minute of falling partially asleep. If I fall asleep more deeply without my "medicinals," I stand a good chance of having an involved dream of meeting friends, feeling as if I can breathe figuratively for the first time because I'm accepted and then realize that I'm doomed to return to that place where I am considered a failure. If I've had whiskey within the past four hours or so, I remember that I graduated from the University of Delaware in 2002, it is 2016 and no one has cause to accuse me of being an academic failure anymore.
(Gulp down that air! Seriously, you graduated more than 14 years ago when it looked like your symptoms would let you work again.) There has been no significant relief since then.and spending time around anyone but Melissa can cause me crippling pain and twitching. That and frustration over a phone that hardly ever works right keeps me from answering the phone all that often. It took a long time but I learned a basic concept involved in coping. Try to avoid doing things that I don't want to do when they are going to make me feel worse.
Right now, I would like to write this journal entry and finish it but I'm twitching hopelessly.
I've gotten a couple of hours of sleep in now and I feel much better for now. This is the sort of time that I don't write about very often since pretty much anyone without a disability can do this sorta thing. I have been playing some computer games during my light symptom days. The games that I choose are best when I take the time to look for certain important characteristics. For one, I like my games absolutely free. For another, I don't like to play ganes where eye/hand coordination plays a big role. Normally, that means I like turn based strategy games best but I've run into a few real time games that play to my strengths.
"Call of War" is a real time strategy game but it can take days of real time to gather the resources required to build the favtory and air field to be able to build a fighter plane. That would be a biplane fighter from the mid to late 1930s. It takes another week to get yourself a fighter that belongs in a game about the Second World War. With nations starting off with unpredictable strengths and weaknesses, you get the chance to do things that never happened in the real world. My game playing the UK started off with the invasion of Ireland because of their mineral resources. As the United States, I'm building a B-17 base in Dover, Delaware. In real life, Dover Air Force Base is a vital supply hub using the most advanced cargo planes and the Delaware Air National Guard helps defend US airspace. In "Call of War," I can do silly things like build and mass B-17s in Delaware because I don't have a kid who grew up with thumbs of lightning rubbiing my nose in the "mistake."
Of course, I continued writing through not as regularly as before. I can play "Call of War" or one of the others for a few minutes to set up the next 24 hours of action. Writing requires organized thought and dedication. You have to be dedicated to your own ideas so you can follow through. Other times, you have to be dedicated to the cause whatever the cause may me. I began this online journal as an attempt to write an account of chronic illness without the sugar coating. After 16 years, I'm not brave about it all anymore. On days when I'm in a lot of pain, I want to be sedated to that I can't feel the pain. On days with less pain, there's a great temptation to find sedation in order to feel like less of a failure.
So, how am I hanging on better than usual? Well, it's all about perception. I have always enjoyed myself here and there even on the worst days but it made me feel guilty. There are children going without food because their nutritional assistance programs are bound to actual school attentance. When school is out, the kids don't get the food. Last night, I ate takeout Chinese food which tasted wonderful. Whiskey and bubbly lemon flavored water tasted wonderful and helped numb me though the news of all the shootings. I see sadness and more sadness and I don't want anyone to be at fault. I want everyone to go home to their families.
I posted on Facebook how I don't see black lives, cop lives, white lives and so on. When a traffic stop where the driver complies with a polceman's orders results in him being shot after aid is withheld for 20 minutes, I see a terrible abundance of human tragedy. It's the same to me when a man pinned down by two cops gets shot for "resisting arrest" despite the fact that the gun used as an explanation never left his pocket. It's another human tragedy that makes me sad. Most of my post was devoted to the heroic cops who showed us both sides of their job that night. They got to be role models walking with the crowd of protesters and then they fought down the natural panic of an unseen threat killing your friends with you possibly being next. These cops were heroes who imposed the most order possible by finding safe havens for the civilians until they were able to hunt down the murderer and kill him after he refused to surrender..
After I posted this, an angry man claimed that I was another liberal (true) always defending the criminals (false). That's not a direct quote since I don't feel like hunting down a frustrating post written by an idiot - No! I must not judge. - written by someone who approves of police who make other police look bad. Yes, this me backsliding on the whole "better than usual" bit but I am letting the argument go faster than usual and trying to express it in non-personal terms. These deaths are not about me to the same degree that they are about others. I want to react in a demonstration of sympathy but I don't want anyone thinking I want someone to believe I want this to be all about me.
As for what Brian reported, I have a request to make of my fellow Chiarians and Zipperheads. I need you to hang on and deal with today's symptoms today. I want the privilege to sit at a bar table in the Old Chiarians' Home swapping stories. I was out of bed and walking around a very little bit on the same day when my second neurosurgeon had the anesthesia or sedation turned off and took the breathing tube out. When talking him up to a fellow Chiarian at some point in her pre-op workups, I mentioned that he was so good that I got out of bed the first day. I didn't know he was behind me at that moment and he clarified that I was out of bed the first day. I shouldn't have said anything because unreasonable expectations and Chiari don't mix well.
Anyway, we Chiarians need to stick to reasonable expectations. We need to manage the pain a day or even an hour at a time because prescriptions work better when we're less upset. If you hang on, I need to try matching you because I'm hyper-competitive. It can be dangerous when there's a storm approaching and my pain will keep getting worse until I rest and medicate. One is coming now so I think I'll post this. Let's all try to stay alive now.
Monday, May 9, 2016
The Struggle
When I write about a day to day struggle to keep going through pain, a lot of you know exactly what I'm talking about before I finish the first sentence. The same thing applies to various other chronic illnesses especially the invisible ones. It's a struggle to manage the current that tries to pull you under the water and drown you. Remaining still for too long hurts but so does moving. You can put one foot in front of the other and get somewhere even if it's not very far. There's a sneaky little trick of the sort that "the kids" might call a life hack which happens to be more literal than most. If you're alive, you're doing well.
Unfortunately, there's another similar struggle that's far more common than most believe. I'm referring to psychological and/or sexual abuse. In this case, you and your abuser appear to engage in a pact to drown you so that it looks as if he tried to save you but failed heroically. The truth may not set you free but it's better than dealing with this undertow. The truth is helpful because there are falsehoods that are accepted so easily that it's common to call them medicine. "It was a bitter pill to swallow." I'm talking about the false connection between your personal strength and how well you survive a history of abuse.
"In the end, his strength failed him as he succumbed to mere memories from decades ago." Believing your abuser more than yourself is a problem with layers each deserving its own Charlie Brown scream. "Well, she grew up the same way you did and she turned out just fine." That's a fun one because it has so many factual flaws in it. First of all, no two people grow up under the exact same circumstances. Second, I've dealt with spina bifida my whole life. When you factor that in, I turned out to be pretty well adjusted.
"John likes to blame others for all his problems. The simplest solution is often the correct one and so John is completely at fault." The devil is in the details here. It is true that I make my share of mistakes and there are times when I make more than my share. This was a near deadly attack against me too many times because there were at least two schools of thought. One was that I liked to blame others for my mistakes to avoid having the blame put on me. The second was that I was a real arrogant SOB for believing that I could avoid making the initial mistakes.
Either I was an arrogant SOB who believed in my own perfection, someone who blamed others for all his problems or could there be a third answer? I had been advised that I was too smart to fall short of near perfection The proposed solution to this problem is to just do what I'm told. When I was five or eight, this wasn't a consideration. Didn't everyone do what they were told? When I was ten, I had believed that I was a great many negative things long enough to start considering suicide regularly. Wouldn't everyone be better off? (The answer is no just in case I'm not being clear.) I was ten years old and in the fifth grade and the great puzzle of life seemed to require my death. All they wanted from me was for me to do my best which meant something unobtainable.
Call this a tangent that got out of hand if you'd like but my point is about the struggle. I'm struggling to get through a contest where winning and losing is measured by life and death. By those rules, I am way ahead adding whatever I can to the cause of life (as I define it not in terms of any political debate) by continuing on trying to get a laugh or to make like better in more practical ways. I've not just lived for 41 years with my difficulties. Before I was 18, I earned the rank of Eagle Scout without asking for the official accomodations that you could get back then. Instead, the friends too numerous to name helped me even when it was my first Patrol Leader with whom I've recently reconnected here or the boys (they never aged in my head) who roasted me so well at my Eagle Award dinner. I remember my first Patrol Leader helping me out the most by having me focus on where I could improve. Having never heard a flaw expressed as an opportunity before, I had no problem replying that I needed to be more cheerful. It was a new way of looking at life and no Scouting challenge ever led me to despair though I still see more mistakes and weaknesses than positives.
I learned two major guiding lights in that time of my life. Always resist despair and never find an excuse to hurt someone else. I mean really hurt them not something you can both agree is funny. It all sounds so serious written out here but it came down to little choices. If you had the chance to humiliate someone, do something else and you'll both have more fun. In a basketball game, you can deflect a shot away or you can slam it in the guy's face. Don't slam it in his face unless you're both professionals. You can be competitive, play to win and all that without any humiliation. If you're in a sudden windstorm in the dark and cold, make sure the little guy's tent is secured before working on your own. That might mean a bunch of little guys going to chase down your tent that's flying maybe two feet off the ground and catching it just before it would have flown into the campfire. I wasn't in the tent but they saved me more than a bad weekend, after all.
As I mentioned before, I'm 41 and that doesn't bother me on the face of it. What bothers me is that part of me varying in size from moment to moment holds this desperate desire for my mother or father's approval. When I let that part of me lead the way, I go to a very bad place. I learned despair seeking parental approval and it is a deadly serious despair when it takes hold of me. Despite my struggle to survive, do the right thing, find a path forward for me in life and to keep growing, I learned that I could never earn the approval from him that I need.
My New York family does what they can and they are the closest I've ever come to having birth parents who didn't want a refund. It's a wonderful feeling but these aren't my formative years anymore. Therefore, every action I take has the equal and opposite reaction of disapproval in absentia.
Unfortunately, there's another similar struggle that's far more common than most believe. I'm referring to psychological and/or sexual abuse. In this case, you and your abuser appear to engage in a pact to drown you so that it looks as if he tried to save you but failed heroically. The truth may not set you free but it's better than dealing with this undertow. The truth is helpful because there are falsehoods that are accepted so easily that it's common to call them medicine. "It was a bitter pill to swallow." I'm talking about the false connection between your personal strength and how well you survive a history of abuse.
"In the end, his strength failed him as he succumbed to mere memories from decades ago." Believing your abuser more than yourself is a problem with layers each deserving its own Charlie Brown scream. "Well, she grew up the same way you did and she turned out just fine." That's a fun one because it has so many factual flaws in it. First of all, no two people grow up under the exact same circumstances. Second, I've dealt with spina bifida my whole life. When you factor that in, I turned out to be pretty well adjusted.
"John likes to blame others for all his problems. The simplest solution is often the correct one and so John is completely at fault." The devil is in the details here. It is true that I make my share of mistakes and there are times when I make more than my share. This was a near deadly attack against me too many times because there were at least two schools of thought. One was that I liked to blame others for my mistakes to avoid having the blame put on me. The second was that I was a real arrogant SOB for believing that I could avoid making the initial mistakes.
Either I was an arrogant SOB who believed in my own perfection, someone who blamed others for all his problems or could there be a third answer? I had been advised that I was too smart to fall short of near perfection The proposed solution to this problem is to just do what I'm told. When I was five or eight, this wasn't a consideration. Didn't everyone do what they were told? When I was ten, I had believed that I was a great many negative things long enough to start considering suicide regularly. Wouldn't everyone be better off? (The answer is no just in case I'm not being clear.) I was ten years old and in the fifth grade and the great puzzle of life seemed to require my death. All they wanted from me was for me to do my best which meant something unobtainable.
Call this a tangent that got out of hand if you'd like but my point is about the struggle. I'm struggling to get through a contest where winning and losing is measured by life and death. By those rules, I am way ahead adding whatever I can to the cause of life (as I define it not in terms of any political debate) by continuing on trying to get a laugh or to make like better in more practical ways. I've not just lived for 41 years with my difficulties. Before I was 18, I earned the rank of Eagle Scout without asking for the official accomodations that you could get back then. Instead, the friends too numerous to name helped me even when it was my first Patrol Leader with whom I've recently reconnected here or the boys (they never aged in my head) who roasted me so well at my Eagle Award dinner. I remember my first Patrol Leader helping me out the most by having me focus on where I could improve. Having never heard a flaw expressed as an opportunity before, I had no problem replying that I needed to be more cheerful. It was a new way of looking at life and no Scouting challenge ever led me to despair though I still see more mistakes and weaknesses than positives.
I learned two major guiding lights in that time of my life. Always resist despair and never find an excuse to hurt someone else. I mean really hurt them not something you can both agree is funny. It all sounds so serious written out here but it came down to little choices. If you had the chance to humiliate someone, do something else and you'll both have more fun. In a basketball game, you can deflect a shot away or you can slam it in the guy's face. Don't slam it in his face unless you're both professionals. You can be competitive, play to win and all that without any humiliation. If you're in a sudden windstorm in the dark and cold, make sure the little guy's tent is secured before working on your own. That might mean a bunch of little guys going to chase down your tent that's flying maybe two feet off the ground and catching it just before it would have flown into the campfire. I wasn't in the tent but they saved me more than a bad weekend, after all.
As I mentioned before, I'm 41 and that doesn't bother me on the face of it. What bothers me is that part of me varying in size from moment to moment holds this desperate desire for my mother or father's approval. When I let that part of me lead the way, I go to a very bad place. I learned despair seeking parental approval and it is a deadly serious despair when it takes hold of me. Despite my struggle to survive, do the right thing, find a path forward for me in life and to keep growing, I learned that I could never earn the approval from him that I need.
My New York family does what they can and they are the closest I've ever come to having birth parents who didn't want a refund. It's a wonderful feeling but these aren't my formative years anymore. Therefore, every action I take has the equal and opposite reaction of disapproval in absentia.
Monday, February 22, 2016
New Source of Pain
There's a new source of pain in my life and, as usual, I can't blame anyone for it. As you all know, big changes in barometric pressure and long-ish car rides cause me intense pain. No one can control the weather and no one forces me out on long car trips so I can't blame anyone. This latest source of pain is a little less obvious but I'm not vindictive enough to blame anyone for things beyond their control these days. The latest source of intense pain in my life comes from former heroes who have failed to live up to my expectations.
Long time readers may remember "The Big Three" and (only since I've mentioned them) wondered what ever happened to my search for them. The truth is that I found two out of three which is amazing since all I had for the third was a first name and the state in which she was born. Also, I felt that my link of friendship to #3 was the weakest and the most likely to get me hurt. Therefore, I decided to wish dear old Caroline the best from afar and not bother looking anymore. Finding the other two was a seemingly impossible enough task to occupy those spare moments when the pain allowed me to think.
One turned out to be actively hiding from someone but not from me so I asked a third party to ask her to contact me. She did and we exchanged a few amusing emails before I remembered why it was so easy to part ways before. Even when we were kids and life was simpler in some ways, she wasn't the type to do things like return phone calls or take one step out of her way to stay in touch. I enjoyed the challenge way back when and I wasn't terribly surprised when our email exchange stopped before it had a chance to truly renew our friendship. It's okay. I loved her like a sister or a cousin or something before despite knowing this about her.
Finding the first person on that list was a big deal to me. I spent a lot of time pondering how it was that I failed to just run into her while at a restaurant with Melissa somewhere. Well, it turns out that we live in an awfully big world and some of us spread out into it. Melissa moved from New York to Delaware to be with me and that's what matters. Perhaps she had moved as far away as Sussex County, Delaware. Then again, there are 49 other states in this nation and it was possible that she had moved abroad. That just didn't fit into my view of the world and no one should dare not fit into my view of the world! In fact, I found her and she had moved outside Delaware.
Well, I am over the hurt from her but she's an easy example to use while explaining the hurt from others. Why was I hurt by her? Had she done me wrong in some terrible way? Well, no. What happened? When I was 15 years old, I considered her a miracle worker for her way of helping me survive my life. I was ready to cash in my chips (Yet another euphemism!) because I was a terrible person and a failure at everything. Mostly what she did was treat me like a human being when others did not while being almost half as pretty as Melissa whom I didn't know yet. If she could be kind to me and treat me as a friend which is an upgrade from human being, I couldn't be all that bad. She became my hero and she protected me from my mostly unfounded fears of high school.
What changed that? Well, nothing changed it long term. There are far too many days when the pain leaves me with no one to blame and she'll never know any better so I pick her. Otherwise, she grew up just like I did. Her life seems more normal to the outsider (like me) than mine might but I'm sure it has its own difficulties. After all, I'm terribly behind in all my correspondence with people who matter a whole lot to me and I do have a lot of time on my hands. Obviously, regular readers would know that coping with pain takes up all but a little of this time but you can't see that from far away. Knowing what little I know and won't make public, I can believe that she has things to do that are far more pressing than trying to renew a friendship with someone who is a distant memory.
So, what's really bugging me? There were other heroes from the bad old days when I took abuse all the time because I didn't know better. I used to fantasize that these people would catch my parents breaking my spirit and tell me that I deserved better. I fantasized that these people would find me a sanctuary where I would be appreciated for the person I was and not for who I might be if I were cured of all my flaws. Apparently, they didn't see it or so I thought at the time.
One by one, these older adults whom I fantasized about saving me have decided to continue looking the other way. Thankfully, I didn't need them. They are part of my past now along with my parents. The pain isn't gone, of course. It will come back at the most inconvenient times just as the pain of the cruel words, nasty looks and acts of humiliation from my parents do. My real family, aka the New York family, offers me the love and acceptance that I need and I married the most wonderful woman in the world. It took me a long time to get here but I'm feeling like my old high school friend might reply to my thanks about treating me as a friend with one word. That word might be "duh!"
Long time readers may remember "The Big Three" and (only since I've mentioned them) wondered what ever happened to my search for them. The truth is that I found two out of three which is amazing since all I had for the third was a first name and the state in which she was born. Also, I felt that my link of friendship to #3 was the weakest and the most likely to get me hurt. Therefore, I decided to wish dear old Caroline the best from afar and not bother looking anymore. Finding the other two was a seemingly impossible enough task to occupy those spare moments when the pain allowed me to think.
One turned out to be actively hiding from someone but not from me so I asked a third party to ask her to contact me. She did and we exchanged a few amusing emails before I remembered why it was so easy to part ways before. Even when we were kids and life was simpler in some ways, she wasn't the type to do things like return phone calls or take one step out of her way to stay in touch. I enjoyed the challenge way back when and I wasn't terribly surprised when our email exchange stopped before it had a chance to truly renew our friendship. It's okay. I loved her like a sister or a cousin or something before despite knowing this about her.
Finding the first person on that list was a big deal to me. I spent a lot of time pondering how it was that I failed to just run into her while at a restaurant with Melissa somewhere. Well, it turns out that we live in an awfully big world and some of us spread out into it. Melissa moved from New York to Delaware to be with me and that's what matters. Perhaps she had moved as far away as Sussex County, Delaware. Then again, there are 49 other states in this nation and it was possible that she had moved abroad. That just didn't fit into my view of the world and no one should dare not fit into my view of the world! In fact, I found her and she had moved outside Delaware.
Well, I am over the hurt from her but she's an easy example to use while explaining the hurt from others. Why was I hurt by her? Had she done me wrong in some terrible way? Well, no. What happened? When I was 15 years old, I considered her a miracle worker for her way of helping me survive my life. I was ready to cash in my chips (Yet another euphemism!) because I was a terrible person and a failure at everything. Mostly what she did was treat me like a human being when others did not while being almost half as pretty as Melissa whom I didn't know yet. If she could be kind to me and treat me as a friend which is an upgrade from human being, I couldn't be all that bad. She became my hero and she protected me from my mostly unfounded fears of high school.
What changed that? Well, nothing changed it long term. There are far too many days when the pain leaves me with no one to blame and she'll never know any better so I pick her. Otherwise, she grew up just like I did. Her life seems more normal to the outsider (like me) than mine might but I'm sure it has its own difficulties. After all, I'm terribly behind in all my correspondence with people who matter a whole lot to me and I do have a lot of time on my hands. Obviously, regular readers would know that coping with pain takes up all but a little of this time but you can't see that from far away. Knowing what little I know and won't make public, I can believe that she has things to do that are far more pressing than trying to renew a friendship with someone who is a distant memory.
So, what's really bugging me? There were other heroes from the bad old days when I took abuse all the time because I didn't know better. I used to fantasize that these people would catch my parents breaking my spirit and tell me that I deserved better. I fantasized that these people would find me a sanctuary where I would be appreciated for the person I was and not for who I might be if I were cured of all my flaws. Apparently, they didn't see it or so I thought at the time.
One by one, these older adults whom I fantasized about saving me have decided to continue looking the other way. Thankfully, I didn't need them. They are part of my past now along with my parents. The pain isn't gone, of course. It will come back at the most inconvenient times just as the pain of the cruel words, nasty looks and acts of humiliation from my parents do. My real family, aka the New York family, offers me the love and acceptance that I need and I married the most wonderful woman in the world. It took me a long time to get here but I'm feeling like my old high school friend might reply to my thanks about treating me as a friend with one word. That word might be "duh!"
Tuesday, January 26, 2016
What a Ride!
I knew that I had a trip to New York coming up and I knew I was already sicker than usual. Therefore, I did the one day at a time thing. What must I do to get through Monday? I needed to make those last five dollars we had to our name last. While I don't remember exactly how, we made it. Melissa got paid on Tuesday, I got paid on Wednesday and things were looking great on Wednesday. Melissa was able to buy me more whiskey while I was able to pay the bills for the month.
Nonetheless, I was getting sicker as the week went on and I learned of a big storm that was coming to dump snow on us supposedly. That's when Melissa reminded me of the trip to New York that was coming up. You're joking, right? The painful but beautiful weather was going to hit right along with the painful yet painful long car ride to New York? Melissa had this long list of ideas on how to make the ride up better but the weirdest thing happened. We battened the hatches for this long and terrible storm that would cease all activities of life in the state for as long as three or four days but the storm all but missed us. Eight inches of snow is nothing to sneeze at in Delaware but the storm was ending Saturday night instead of Sunday morning.
Melissa rushed through packing Sunday morning while I huddled in a daze unsure if I'd finally fallen asleep and imagined this whirling dervish in the house packing everything in sight. I had a cup of coffee while trying to be sure that I was awake and then went for my shower.
Okay. I don't know how well you guys understand showers and me. They are not refreshing. They are agonizing experiences where I have to hold my hands over my head. Between the end of my shower and the clean clothes awaiting me, I tried to pass out. In a more merciful world, I'd have found a way to lose consciousness then and there. The pain was miserable and I was done for the day.
Melissa finished up our errands and let me have another quick nap but I wasn't ready for the road. I never wanted to sit in a car again much less that same day. For the first time in my life long memory, I felt car sick. The pain was overwhelming as I moaned and bit back the louder noises. When Melissa insisted on a rest stop, fear of public humiliation was all that kept me upright. I wanted to beg her to spend the night with me in that rest stop so we wouldn't have to return to that car. We had not rigged up the planned coping mechanisms for dealing with pain. There were no premixed and mislabeled cocktails to ease the pain away. Melissa ended up mixing proportions in parking lots that almost made me cough with all my experience.
I did fall down after we made it here and things didn't get much better. Instead of the quiet sleeping house I'd envisioned, everyone was talkative and joyful. At one point, I snapped something about people prolonging my pain and I thought it was going to work for a while but they caught their momentum and started right up again.
All I wanted to do was sleep but I was too wired from hurting so much for so long that I was up just about all night. It started back up early this afternoon until Melissa managed to help me. I think I'm going to save this here and post only after I feel better-ish. Rogue spellcheck at work. Save me!
I'm up before 6 AM and back to work on this entry. The pain was extraordinary again yesterday but I want to straighten something out before I post this. I am here because I want to be here. I'm in a lot of pain but I'm an old hand at this. I could be in almost as much pain sitting at home alone. If I were sitting home alone, I'd be missing my family here. Yes, I'd miss Melissa most of all but I'd be kicking myself for passing up a chance to spend time with the New York family.
By the time the afternoon arrives, I'll be in a lot of pain and lashing out at people almost at random. They will be either out on the town or gathered around their TV like most American families. Since the most comfortable chairs are in that room, I probably will be there as well. My dear 75 year old mother in law has ceded her favorite chair to me so far and that's a huge gesture. I'd be in far worse shape without it. They added a stop on their errands yesterday to get me some of my favorite beer that's local to the area and no one complained (including Melissa) when I threw my favorite expensive import on the list with the stuff that's local to New York. I get treated like...family here.
For those of you who have been reading through all the bumps and bruises I've had concerning my birth family, you might have a clue of how important that is to me. Yes, my parents were generous to the point of extravagance more times than I can count. Credit where credit is due, after all. They saved my ass more times than I would prefer to remember but they never wanted me around except for yard work day. That's even a bad joke because we didn't work together on anything. We each did our own separate assignments and mine was never done right or maybe it was but the point is that it matters a lot less here.
Here in the early morning hours when I can appreciate the finer things, I feel more welcome than I do in my own house. Thank you, everybody.
Nonetheless, I was getting sicker as the week went on and I learned of a big storm that was coming to dump snow on us supposedly. That's when Melissa reminded me of the trip to New York that was coming up. You're joking, right? The painful but beautiful weather was going to hit right along with the painful yet painful long car ride to New York? Melissa had this long list of ideas on how to make the ride up better but the weirdest thing happened. We battened the hatches for this long and terrible storm that would cease all activities of life in the state for as long as three or four days but the storm all but missed us. Eight inches of snow is nothing to sneeze at in Delaware but the storm was ending Saturday night instead of Sunday morning.
Melissa rushed through packing Sunday morning while I huddled in a daze unsure if I'd finally fallen asleep and imagined this whirling dervish in the house packing everything in sight. I had a cup of coffee while trying to be sure that I was awake and then went for my shower.
Okay. I don't know how well you guys understand showers and me. They are not refreshing. They are agonizing experiences where I have to hold my hands over my head. Between the end of my shower and the clean clothes awaiting me, I tried to pass out. In a more merciful world, I'd have found a way to lose consciousness then and there. The pain was miserable and I was done for the day.
Melissa finished up our errands and let me have another quick nap but I wasn't ready for the road. I never wanted to sit in a car again much less that same day. For the first time in my life long memory, I felt car sick. The pain was overwhelming as I moaned and bit back the louder noises. When Melissa insisted on a rest stop, fear of public humiliation was all that kept me upright. I wanted to beg her to spend the night with me in that rest stop so we wouldn't have to return to that car. We had not rigged up the planned coping mechanisms for dealing with pain. There were no premixed and mislabeled cocktails to ease the pain away. Melissa ended up mixing proportions in parking lots that almost made me cough with all my experience.
I did fall down after we made it here and things didn't get much better. Instead of the quiet sleeping house I'd envisioned, everyone was talkative and joyful. At one point, I snapped something about people prolonging my pain and I thought it was going to work for a while but they caught their momentum and started right up again.
All I wanted to do was sleep but I was too wired from hurting so much for so long that I was up just about all night. It started back up early this afternoon until Melissa managed to help me. I think I'm going to save this here and post only after I feel better-ish. Rogue spellcheck at work. Save me!
I'm up before 6 AM and back to work on this entry. The pain was extraordinary again yesterday but I want to straighten something out before I post this. I am here because I want to be here. I'm in a lot of pain but I'm an old hand at this. I could be in almost as much pain sitting at home alone. If I were sitting home alone, I'd be missing my family here. Yes, I'd miss Melissa most of all but I'd be kicking myself for passing up a chance to spend time with the New York family.
By the time the afternoon arrives, I'll be in a lot of pain and lashing out at people almost at random. They will be either out on the town or gathered around their TV like most American families. Since the most comfortable chairs are in that room, I probably will be there as well. My dear 75 year old mother in law has ceded her favorite chair to me so far and that's a huge gesture. I'd be in far worse shape without it. They added a stop on their errands yesterday to get me some of my favorite beer that's local to the area and no one complained (including Melissa) when I threw my favorite expensive import on the list with the stuff that's local to New York. I get treated like...family here.
For those of you who have been reading through all the bumps and bruises I've had concerning my birth family, you might have a clue of how important that is to me. Yes, my parents were generous to the point of extravagance more times than I can count. Credit where credit is due, after all. They saved my ass more times than I would prefer to remember but they never wanted me around except for yard work day. That's even a bad joke because we didn't work together on anything. We each did our own separate assignments and mine was never done right or maybe it was but the point is that it matters a lot less here.
Here in the early morning hours when I can appreciate the finer things, I feel more welcome than I do in my own house. Thank you, everybody.
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