I felt as if I could change the world for the better a few days ago and I'm still trying to hold on to the most realistic parts of that. Then, I came very close to losing it completely last night. We all know that I have big dreams but that I am satisfied with the parts of those dreams I've been able to fulfill already. Most importantly, I have Melissa and my three beloved trouble making cats who are plotting to disassemble the house piece by piece. I have my extended family including Staplefords, those married to Staplefords in all respects and, just as importantly, I have the Allen side of the family including the Silvestris and other branches. It's always been a dream to feel connected to something big all around me.
My writing career is something that probably won't succeed but I don't care. I love it so I will continue to battle the odds. Winning the grand fight against the odds as a goal has been both a positive and a negative for me as long as I have lived. I am a spina bifida/Chiari II patient who managed a BA in History and to earn my Eagle Scout award from the Boy Scouts of America. People helped me at every turn along the way and I have to get over the shame I feel about this. That's how life works. I owe a lot to my former peers in and the adult leaders who served Troops 660 and 2. I have happier memories of Troop 660 but that reflects life in general and I have to believe the adults of Troop 2 tried to save me from the bullies. The bullies have all either apologized or agreed to move on themselves. Sometimes, I faced greater challenges than what I saw others around me face and then there is all that help I got. I believe that God will not give me a challenge that I cannot equal though I may require a lot of help. If you're not religious, try a little horse racing analogy. At least in some races, they handicap horses by forcing them to carry extra weight. The fast horses get the largest handicap. Let's not get into my old bowling handicap because that just muddles the waters.
Nonetheless, I don't want to rest on past laurels though it may seem impossible to do more. I want to contribute to the community whether that means my neighborhood here in New Castle, DE or the Chiari community. When I saw just how large the Chiari community is, I just about ran in terror. How can I possibly help or even influence a group that large? I needed to stop being silly and remember how life works. I walked into "Saint Mark's High School" for the first time ever for two weeks of evening "Band Camp" before the school year started in the summer of 1988. I walked in carrying my baritone which is not for the weak to say the least and the door shut like a guillotine. To put it humorously yet literally, the door hit me on the ass on my way in.
I wanted to run screaming from the humiliation (that no one saw) but I steeled myself and made it into the band room. That's when life's other side caught up to me. A perfect stranger gave me the metaphorical hand holding that I needed to make it through that day. She became a good friend and then graduated at the end of that year while I went on to establish myself in school. I have spent much of my life since trying to live up to her example and I think I've done pretty well. I doubt that she reads my pain blog or anything else I write that ends up on Facebook but that's enough embarrassing her for now anyway.
How can I fit into the huge Chiari community? I will do the best I can walking in the front door. If it hits me on the ass, I hope someone will rise to help me. When I'm more established which tends not to take me very long, I will try to use this space to help people. I will be the guiding hand or one of many to help deal with the most frustrating times. I took on the job of helping the new Scouts fit in while at Troop 660 first on my own then in an official capacity. This is something that I know I can do and do well.
As for asking too much of others, I think I do okay finding a good balance. When the hideous feeling of all encompassing failure hit me last night, I went upstairs to listen to Melissa sleep for a while. That helped and I went on Facebook and bleated out my misery which helped. I took a look at my old friend's face and saw that she was surviving or thriving or whatever word applies. I don't know anything to reveal accidentally but I do know how a poorly chosen word out of the blue can hurt. I took a look at that smile since Melissa was asleep and would not have enjoyed having a light turned on just to see her and felt the old strength come back.
Crashing is inevitable for a Zipperhead. Our lives contain too much physical pain and too much loss for us to remain steady. I could choose to show you nothing but the best of me but I don't find those "glamor shots" to be useful. As an online journaller, I used an image of what I called "the peeper's window" to guide what I wrote and I do now as a pain blogger. If I knew someone were looking into my house through one particular window, what would I choose to show? The answer is mostly negatives like "as little as possible of friends" and "nothing that makes Melissa uncomfortable" but I could sum it up another way. I show you what I am like warts and all. Anything less would be unhelpful.
I close with this. Just remember that every story of crashing is followed by one of getting back up again even if I fail to write it. And now Madeline the cat is demanding that I stop this awful typing and go put a blanket on my lap. I am her Daddy and she wants a stable napping platform. Madeline almost always gets what she wants as do Pippi and Meekers but Maddie whines for all three of them.
Tuesday, February 25, 2014
Tuesday, February 18, 2014
Crashing is Inevitable
I do not want to go to sleep. Being awakened by pain is a new thing to add to nightmares. I don't want to stay awake.because I know how painful that will be. I don't want to write fiction because I've come to an awkward scene in my current project. I don't want to go back to any of the other projects that I promised myself I'd get back to as soon as I made enough progress on (many other projects) to be able to set them aside without forgetting everything. I don't want to do anything because it all feels too much like work and I don't want to do nothing because that feels like failure.
The fact of the matter is that I hurt too much to think it might be possible to relax, I'm frustrated with myself to the point of feeling like I deserve the pain anyhow and I fear the awful consequence of waking up in pain. I'm stalemated on everything. The entirety of my life seems to be balanced on unpleasant consequences. I was certain that the 20 ounce bottle of Diet Pepsi that Melissa bought would taste good. I was afraid that she had bought it for herself and that she would miss it if I drank it. Of course, it tasted just as good as I had hoped so now it exists in the past tense only. I may very well have subtracted from Melissa's happiness even if she remembered where she put it and I don't like making her life less unpleasant despite the fact that it was very good.
Why am I writing this when everything I'm writing adds up to the pointlessness of life? I gained a new Twitter follower and learned of another Zipperhead in the making trying to get the surgery done so she can feel right. It is possible that she will be relieved of all her symptoms by a true Chiari expert but it's unlikely. Surgery frees us from the progression that might be deadly sooner or later. That's presuming that the experts consider her to be a surgical candidate with what the community likes to call Chiari Zero with a very small herniation or I might be remembering this all poorly. My 20 mm. herniation was considered huge but I don't remember if half or a quarter of that is average. She might be in the sweet spot of the very old school method of determining surgical candidate. My surgeon used how badly your symptoms hurt you as the primary consideration.
There was once a gentleman considered to be a real pillar of the community who told us all how being in good shape before your surgery is the key to a good outcome. By the time I alienated him with my bad attitude, he had long since regained the ability to bench press more than his own weight. He held himself up as the ultimate success story. He can't hold himself up as anything these days because he died though I do not know whether his death was Chiari related or not. I was exiled from his part of the community while he was still very healthy and I do not plan to ask those who exiled me for forgiveness. I was kicked out after I had quit already.
My point is that Chiari is something to take very seriously regardless of your specific statistics. By definition, ACM interferes with the function of your brainstem. That part of your brain handles autonomic functions like breathing and keeping a regular heartbeat. Most of us suffer from memory loss though that could be from having something else on your mind. The crowding in your head and having surgery to make room sets you up for a lot of pain. Your brain uses such neurotransmitters as serotonin to handle increased pain yet these same neurotransmitters regulate mood so you are likely to suffer psychological difficulties as well. I mention that to tie in the fact that mood crashes are inevitable. My neck twitches very frequently with a lesser issue of tremors elsewhere. Damage to your spine means that any signal can go wrong including the shockingly complicated process of standing on your own two feet and walking.
My eyes are closing now as I'm writing this so I should sign off. I've been symptomatic for 15 years or so with no end in sight yet I learn and relearn patience over and over. I try to enjoy the small victories as they happen and try to give myself some slack in defeats. We all need to do the same thing whether it is easier or harder for you. After all, not all of you will be lucky enough to have Melissa.
The fact of the matter is that I hurt too much to think it might be possible to relax, I'm frustrated with myself to the point of feeling like I deserve the pain anyhow and I fear the awful consequence of waking up in pain. I'm stalemated on everything. The entirety of my life seems to be balanced on unpleasant consequences. I was certain that the 20 ounce bottle of Diet Pepsi that Melissa bought would taste good. I was afraid that she had bought it for herself and that she would miss it if I drank it. Of course, it tasted just as good as I had hoped so now it exists in the past tense only. I may very well have subtracted from Melissa's happiness even if she remembered where she put it and I don't like making her life less unpleasant despite the fact that it was very good.
Why am I writing this when everything I'm writing adds up to the pointlessness of life? I gained a new Twitter follower and learned of another Zipperhead in the making trying to get the surgery done so she can feel right. It is possible that she will be relieved of all her symptoms by a true Chiari expert but it's unlikely. Surgery frees us from the progression that might be deadly sooner or later. That's presuming that the experts consider her to be a surgical candidate with what the community likes to call Chiari Zero with a very small herniation or I might be remembering this all poorly. My 20 mm. herniation was considered huge but I don't remember if half or a quarter of that is average. She might be in the sweet spot of the very old school method of determining surgical candidate. My surgeon used how badly your symptoms hurt you as the primary consideration.
There was once a gentleman considered to be a real pillar of the community who told us all how being in good shape before your surgery is the key to a good outcome. By the time I alienated him with my bad attitude, he had long since regained the ability to bench press more than his own weight. He held himself up as the ultimate success story. He can't hold himself up as anything these days because he died though I do not know whether his death was Chiari related or not. I was exiled from his part of the community while he was still very healthy and I do not plan to ask those who exiled me for forgiveness. I was kicked out after I had quit already.
My point is that Chiari is something to take very seriously regardless of your specific statistics. By definition, ACM interferes with the function of your brainstem. That part of your brain handles autonomic functions like breathing and keeping a regular heartbeat. Most of us suffer from memory loss though that could be from having something else on your mind. The crowding in your head and having surgery to make room sets you up for a lot of pain. Your brain uses such neurotransmitters as serotonin to handle increased pain yet these same neurotransmitters regulate mood so you are likely to suffer psychological difficulties as well. I mention that to tie in the fact that mood crashes are inevitable. My neck twitches very frequently with a lesser issue of tremors elsewhere. Damage to your spine means that any signal can go wrong including the shockingly complicated process of standing on your own two feet and walking.
My eyes are closing now as I'm writing this so I should sign off. I've been symptomatic for 15 years or so with no end in sight yet I learn and relearn patience over and over. I try to enjoy the small victories as they happen and try to give myself some slack in defeats. We all need to do the same thing whether it is easier or harder for you. After all, not all of you will be lucky enough to have Melissa.
Monday, February 17, 2014
Sitting in the Corner
I was terribly upset yesterday because my in-laws were here visiting and I had been in agony for days before that. My family is very important to me so the idea of missing out on time with them because my health was taking another nose dive. The very good news is that I am blessed with an extremely accommodating family. There were times when they were staying here at my home and I was healthy enough to work all day writing yet I would spend less than an hour with them. They were quite accepting of what I needed in those times. I believe my major symptom at the time was falling down which sounds bad until you realize how much more standing I could do.
Now, it's all about the headaches and all over body aches while reclining in a comfy chair with a blanket and a cat or three. Many days, I cannot watch TV, read or play video games because I fall asleep only to wake when the controller of the moment drops out of my hand. Sometimes, I can keep my attention going for an hour or so when I'm already in severe pain. (I write these entries during my relative good points.) My beloved Melissa and family came in from a long day of doing various things. I fail to follow them on two levels. First of all, they are all women and they lean out over the edge into such stereotypical topics as baking. (I love the results of baking and that's the end of the story for me.) Secondly, they are all healthier than the average Chiarian. Walking through stores and other things mostly just require more energy than I have.
Thus, I was playing PS3 NHL Hockey when they came home. I paused it during their entrance because there is something about having people walk into the house. This time, it stayed paused because they were talking about things that were at most one level removed from my areas of interest. Every so often, I would jump into the conversation and then back out. They were as adaptable as I mentioned before with these hit and run tactics. Not even counting the part of the day when I got to act like a little kid and enjoy Christmas presents with worrying how it could be used against me, I had a very good time.
Unfortunately, my control slipped toward the end of the evening. As usual, I didn't ruin anything by crying out in pain. Everyone is so used to that by now that they don't react. It's a real catch for them because I get embarrassed when someone notices my pain and tries to change plans or "let me rest" to help. I also get angry because those same people pull off the perfect imitation of someone not noticing. I want to have my cake and eat it, damn it! This time, I wanted Melissa to read my mind and discover that my tablet needed charging and that I wanted a Powerade the fridge to take pain pills because Meekers had camped out on my lap. Perfectly sensible, right?
I know. This cannot be easy to be around. Of course, the Powerade and the tablet needing charging were minor things that I would handle myself if I weren't so trashed out tired that I was the puddle with eyeballs again. It's hard to imagine but they can't see my metaphorical distress. It's amazing what that special brand of fatigue produced by pain and stress will do. There are days when I have to sit and tell myself that I do not want to make the comment that will hurt Melissa's feelings doubly coming from me. I don't ever want to hurt her and I need to strangle those feelings in their crib so to speak.
The point is that the pain doesn't have to ruin everything. It will degrade everything by taking the shine off if nothing else. The good news is that they cannot read my mind so they cannot tell when I am thinking unpleasant thoughts about them. It's no reflection on them but pain can make me hate the world for a while. I'm just very lucky to have such an understanding family who will let me sit in the corner when it will help.
Now, it's all about the headaches and all over body aches while reclining in a comfy chair with a blanket and a cat or three. Many days, I cannot watch TV, read or play video games because I fall asleep only to wake when the controller of the moment drops out of my hand. Sometimes, I can keep my attention going for an hour or so when I'm already in severe pain. (I write these entries during my relative good points.) My beloved Melissa and family came in from a long day of doing various things. I fail to follow them on two levels. First of all, they are all women and they lean out over the edge into such stereotypical topics as baking. (I love the results of baking and that's the end of the story for me.) Secondly, they are all healthier than the average Chiarian. Walking through stores and other things mostly just require more energy than I have.
Thus, I was playing PS3 NHL Hockey when they came home. I paused it during their entrance because there is something about having people walk into the house. This time, it stayed paused because they were talking about things that were at most one level removed from my areas of interest. Every so often, I would jump into the conversation and then back out. They were as adaptable as I mentioned before with these hit and run tactics. Not even counting the part of the day when I got to act like a little kid and enjoy Christmas presents with worrying how it could be used against me, I had a very good time.
Unfortunately, my control slipped toward the end of the evening. As usual, I didn't ruin anything by crying out in pain. Everyone is so used to that by now that they don't react. It's a real catch for them because I get embarrassed when someone notices my pain and tries to change plans or "let me rest" to help. I also get angry because those same people pull off the perfect imitation of someone not noticing. I want to have my cake and eat it, damn it! This time, I wanted Melissa to read my mind and discover that my tablet needed charging and that I wanted a Powerade the fridge to take pain pills because Meekers had camped out on my lap. Perfectly sensible, right?
I know. This cannot be easy to be around. Of course, the Powerade and the tablet needing charging were minor things that I would handle myself if I weren't so trashed out tired that I was the puddle with eyeballs again. It's hard to imagine but they can't see my metaphorical distress. It's amazing what that special brand of fatigue produced by pain and stress will do. There are days when I have to sit and tell myself that I do not want to make the comment that will hurt Melissa's feelings doubly coming from me. I don't ever want to hurt her and I need to strangle those feelings in their crib so to speak.
The point is that the pain doesn't have to ruin everything. It will degrade everything by taking the shine off if nothing else. The good news is that they cannot read my mind so they cannot tell when I am thinking unpleasant thoughts about them. It's no reflection on them but pain can make me hate the world for a while. I'm just very lucky to have such an understanding family who will let me sit in the corner when it will help.
Sunday, February 16, 2014
Drains and Pain
I don't know how many times I have written some variant on feeling drained from the pain or feeling the wave of pain drain the energy out of me. I've found myself feeling as if I were a puddle of some painful fluid in the bottom of my chair lately. It seems as though I should have two eyeballs sitting in the pain blob looking up at my bleached white skeleton which would be all that is left. Of course, the skeleton seems to hurt as well.
Sometimes, scientists want to purify something using a method that requires liquid. I think pain would be an excellent chemical for this practice. In fact, I think someone may have already done this to me. They wanted to test me for the presence of courage so they dissolved the (insert technobabble here) and the pain bonded to every part of me. I'm still standing here so I must have some courage but everything else would have gone down the drains if they flowed right. Visit from the in-laws? Let it be clear that I am very happy to have a meal from the trip to the local popular Redneck Steak Place (yee-haw!) sent back home for me with Melissa at the end of the night. It was a lot less pleasing how I all but forced my poor out of state guests to whisper in their corner of the room while I failed to suffer in silence in my three-quarters. My dear mother-in-law described how she will likely wake up all alert early this coming morning and I thought of my fond memories of actually hosting Melissa's mother and sister on the first floor of my home. I would bring my cup of coffee downstairs and have a chat with her because she has trouble staying asleep past her usual start time at home. I miss that!
Melissa and I were going to be world travelers when we aged gracefully. A photographer friend has a photo of herself doing the least glamorous task of spending time in a motor home and managing to look graceful in the process. My first thought after the much needed and appreciated chuckle was jealousy because Melissa and I were supposed to be doing that. (Okay. I wasn't exactly jealous of the specific task but the traveling it implied would have been nice.) Every tiny part of my life is distilled by and then viewed through a prism of pain.
I had the lovely experience of being awakened by pain for the very first time that I can remember. I'd been awakened by hernia troubles and other things but I'll admit to being scared when I was sleeping a little fitfully and the pain from my dream turned out to be real. It hurt a lot and it chased me out of what I thought was a safe refuge. As someone who loves to read, write and watch fiction where action plays a key role, I can tell you that the part where our hero gets chased out of his "safe refuge" in the middle of the night having to leave possibly vital items behind can be the scariest part of these films. I still get keyed up (not scared but my pulse gets going) during the surprise attack scene in "The Dark Crystal."
The safe refuge thing is far less entertaining in real life as if I didn't have enough sleep issues. Pain can sneak up on me while I sleep now. Once I got calmed down after being chased out of bed, I went online. It was time to announce my total and complete failure at this survival thing but the funniest thing happened. It turned out that I was scared and in pain yet I was still quite alive. "Alive" is still one of my favorite Pearl Jam songs. If I remember correctly, Eddie said something about the meaning of that song evolving. It started out as a curse and a complaint about being alive. After that, it turned into a dare against life. Fuck you, life. You've gotten quite a few shots at me but I'm still alive. In Eddie's case, it went on to be a celebration of life.
I was there at the celebration stage and I expect to get back. For the moment, I'm pissed off. I know there are people who suffer much more pain than I do and some of them are cute kids who get put in TV ads. I know there are a lot of people in the same boat with me. There are quite a few people who don't live with significant daily physical pain but I won't envy them until I walk a mile in their shoes. No thanks. My feet hurt enough. Therefore, I have to be satisfied with giving circumstance and pain a quick flip of the bird and move on.
Things could be a lot worse in my life. In fact, things would be pretty ideal without the pain and I don't trust ideal. Even with the pain, I have this big block of life to make the best of and I know that I would not need to kick myself later. I've been very busy when the pain allows and chomping at the bit when it doesn't. Eddie sings it best as I've seen (more or less seen with tall people about) three times. "I'm still alive!" I'm not wasting the time. I fight to sift every molecule of quality out of what goes down the drain.
Now, back to my regularly scheduled moaning.
Sometimes, scientists want to purify something using a method that requires liquid. I think pain would be an excellent chemical for this practice. In fact, I think someone may have already done this to me. They wanted to test me for the presence of courage so they dissolved the (insert technobabble here) and the pain bonded to every part of me. I'm still standing here so I must have some courage but everything else would have gone down the drains if they flowed right. Visit from the in-laws? Let it be clear that I am very happy to have a meal from the trip to the local popular Redneck Steak Place (yee-haw!) sent back home for me with Melissa at the end of the night. It was a lot less pleasing how I all but forced my poor out of state guests to whisper in their corner of the room while I failed to suffer in silence in my three-quarters. My dear mother-in-law described how she will likely wake up all alert early this coming morning and I thought of my fond memories of actually hosting Melissa's mother and sister on the first floor of my home. I would bring my cup of coffee downstairs and have a chat with her because she has trouble staying asleep past her usual start time at home. I miss that!
Melissa and I were going to be world travelers when we aged gracefully. A photographer friend has a photo of herself doing the least glamorous task of spending time in a motor home and managing to look graceful in the process. My first thought after the much needed and appreciated chuckle was jealousy because Melissa and I were supposed to be doing that. (Okay. I wasn't exactly jealous of the specific task but the traveling it implied would have been nice.) Every tiny part of my life is distilled by and then viewed through a prism of pain.
I had the lovely experience of being awakened by pain for the very first time that I can remember. I'd been awakened by hernia troubles and other things but I'll admit to being scared when I was sleeping a little fitfully and the pain from my dream turned out to be real. It hurt a lot and it chased me out of what I thought was a safe refuge. As someone who loves to read, write and watch fiction where action plays a key role, I can tell you that the part where our hero gets chased out of his "safe refuge" in the middle of the night having to leave possibly vital items behind can be the scariest part of these films. I still get keyed up (not scared but my pulse gets going) during the surprise attack scene in "The Dark Crystal."
The safe refuge thing is far less entertaining in real life as if I didn't have enough sleep issues. Pain can sneak up on me while I sleep now. Once I got calmed down after being chased out of bed, I went online. It was time to announce my total and complete failure at this survival thing but the funniest thing happened. It turned out that I was scared and in pain yet I was still quite alive. "Alive" is still one of my favorite Pearl Jam songs. If I remember correctly, Eddie said something about the meaning of that song evolving. It started out as a curse and a complaint about being alive. After that, it turned into a dare against life. Fuck you, life. You've gotten quite a few shots at me but I'm still alive. In Eddie's case, it went on to be a celebration of life.
I was there at the celebration stage and I expect to get back. For the moment, I'm pissed off. I know there are people who suffer much more pain than I do and some of them are cute kids who get put in TV ads. I know there are a lot of people in the same boat with me. There are quite a few people who don't live with significant daily physical pain but I won't envy them until I walk a mile in their shoes. No thanks. My feet hurt enough. Therefore, I have to be satisfied with giving circumstance and pain a quick flip of the bird and move on.
Things could be a lot worse in my life. In fact, things would be pretty ideal without the pain and I don't trust ideal. Even with the pain, I have this big block of life to make the best of and I know that I would not need to kick myself later. I've been very busy when the pain allows and chomping at the bit when it doesn't. Eddie sings it best as I've seen (more or less seen with tall people about) three times. "I'm still alive!" I'm not wasting the time. I fight to sift every molecule of quality out of what goes down the drain.
Now, back to my regularly scheduled moaning.
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