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.
Your observations deal with so many other illnesses/disabilities. We all need to try to be more accepting of others. We have no idea what others are going through at any given moment. I have my own health issues although I am much better since my weight loss however I have to deal with a husband who has had multiple strokes and thinks I am his mother. He is starting to fail a lot and every day is a struggle for him and for me as his caregiver. Because he appears well everyone assumes that things are rosy here at home. I don't post about the problems only the up side of things. Those who care know the real story and the others don't need to know. I care for him because I love him and I remember the man I married. I know he would do the same for me if the tables were turned. We are married to our loves for a reason and we are blessed to have them. Complain all you want my dear friend. I am only an email away and I hold you and Melissa in my heart and prayers every day.
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