The 24 Hour Loneliness and Pain Cycle

We live in the age of the 24 hour news cycle. With 24 hour news networks and faux news networks, there is something newsworthy to report 24 hours a day 7 days a week or so we're led to believe. I live a concept similar to the 24 hour news cycle. Since pain deprives me of sleep so often yet it doesn't do quite the same to others, I live days that are objectively twice as long as those lived around me. Subjectively, the ratio feels a lot worse than 2-1. The boredom is almost as bad as the pain sometimes.

My strategy is to live intensively instead of extensively. Well, I have to do both in order to avoid the boredom/agony issue but I like to cram as much writing and/or gaming into an hour or two. After that, I get to be awake for the next 20 hours without the ability to do much. When I saw unable to do "much," please keep in mind that TV watching can be exhausting.  A day when I can complete a game of "Madden Football" is rare and exciting. Blog posts are few and far between because I lack sustained energy. The struggle to avoid boredom over a 24 hour day and the constant exhaustion it causes are the yin and yang of my life.

I was bitterly frustrated that an old friend has had no time for me after all. It had seemed as if we had both expended too much effort to give up. As usual, I am judging her too harshly. There was a time when I believed she could do no wrong. As long ago as that time was, I find myself clinging to fragments of that belief. Of course she'll have time for me. What sort of person works full time, cares for four children and doesn't have blocks of time to set aside for someone she hasn't seen in 20 years? If you had your sarcasm meter running, you would realize that no one is like that. I started to use words like dedicated but I realized that she is dedicated to the people who are part of her life today.

It's different for me. I find myself awake at 4 AM contacting people on a whim while neglecting others. The list of people whom I neglect on a high energy day like this is astounding. The frustrating thing is that I cannot learn from this and do differently. The vicious cycle of pain and boredom has reduced me to someone I recognize as a mere caricature of me. I am needy 24 hours a day and seven days a week.

The urge to write has been all but drained from me. This is where I draw the line. Writing is a big part of who I am. If I lose the use of my hands somehow, I'll invest in voice recognition software but I refuse to stop writing. My problem isn't so much physical at the moment. I have not had the urge to write in some time. It's something I want to do well and so my current lack of confidence isn't helping. The biggest obstacle right now may be the PC. After I get the energy to come upstairs and write something, I have to deal with memory issues by rebooting and making sure I don't leave anything running unless I'm using it at that specific moment. It feels as if I'm running out of energy just as I'm starting to write.

Then there is the mighty distraction machine known as Facebook. There are so many things I can do there to alleviate boredom during the couple of hours when I have energy. Very few of those nearly effortless things add value to the world but I am genuinely curious about the answers to the mysteries in certain games. I want to know what happened my miner character's equally fictional father but I can't wait eight hours to have "the workers" make the cheese to unlock the recipe to make the yogurt the game asked for months ago in real time. I've actually forgotten why I need to employ the jeweler much less why his workers insist upon eating yogurt before they will finish the job. I think I have about a thousand eggs sitting around but they are chicken eggs not the turkey eggs I need in order to unlock the yogurt recipe. I haven't written anything much less anything to further my fiction career but the cramps in my arms are becoming increasingly painful. Eep! I just lost my wall that I keep up to prevent there mere background pain from making me go cringe and attempt to sleep.

There's another source of pain that I try to keep locked away but it has worked its way out through the secret doors and hidden passages of my heart. Well, let's say that there are two secret sources but the grief, anger, hurt and doubt that thinking about my parents brings out is nothing new anymore. Perhaps my inability to keep thoughts of my parents locked away comes from this second source. There are times - often mere moments in a day - when I am horribly lonely. I think of moments in the past when I made real connections with people which provided joy or solace. It's awful how far in the past most of these moments actually are but that's not the real problem. People who shared such moments with me either repudiated me soon after or have made it clear that there is no path leading back to what is purely the past for them.

It's tough to remember that my duty as a friend is to accept their wishes no matter how silly I find them. That's often when the little kid in me leaks out and whines. "Are you so ashamed of the time spent with me that it's off limits talk?" We're not talking anything sordid here. I had conversations with people and have kept the content of those conversations to myself because that's what friends do. I would give so much to have more of those conversations but the unwillingness of others is far from the only barrier. If you've never met me, I don't think I could offer an adequate description of what it's like trying to have a conversation with me. Calling what I do when I get flustered stuttering is like calling a top of the line Porsche a car. It is factually accurate but fails to cover the scope of the thing utterly.

There was one time a few years ago when I read a book about meditation and spent some time doing more than my usual "slow down my brain so I can sleep" routine. I decided that the time had come to say goodbye to someone I hadn't seen in 20 years or so. At the time, I believed that everything would be okay if I could just thank her for being my hero when I was 14. She was a big reason why I managed ro hang on despite all the abuse at one of the most vulnerable times in my entire life. She was my friend so I had to be of some value no matter what my parents hinted at or said. Well, my point isn't to put her on some pedestal again. Even then, I was aware that she had flaws. She simply treated me like a human being unlike most people despite all the weirdness that generated from me.

In any case, I was writing about meditation. I wanted to tell her goodbye so I did what any little kid would do and built a scene in my mind. In that, I told her the things that I needed to say and I felt much better for quite some time. Since I was a young kid, there have been many times when I have needed to talk with a specific person but that person might as well have been on the moon. I could not simply call up a friend or, especially, an adult mentor just because my life was in crisis and I needed that person's input. I was told to make the best of it or whatever. At some point, I learned to have conversations entirely in my own head involving that person or what I knew of him or her.

Much of the time, the other person would help me work through the flaws in some plan or other that I had going. As I got older, the conversation involved talking me through the anguish of wanting to please my parents more than anything only to fail over and over. The mere fact that my father called me a such and such (for many different values of such and such) did not make me a such and such. The hours spent establishing the case against me as a such and such did not mean he was right because there was a flaw in the argument somewhere. The fact that there was a valid point or two in all of it did not extend beyond the value of those specific points. I did not have to pass judgment on myself for being a such and such just because he said so.

In recent days, the other person has been Melissa while she's on a long work day. The self esteem that had to fall back on that friend from high school (If she wants to be my friend, then I must be okay.) has long since been replaced by my faith in Melissa. (Melissa loves me so I know I'm okay. The rest of the New York family loves me too so I must be worthy of being in a family.) I used to worry that I was crazy to do this but my favorite mental health professional told me there's nothing wrong with it personally then repeated it more than a few times in my head.

With so many barriers to the human contact I need, I should build the scene in my head. It would be one of those Fall days I used to love so much with the bright colors all over the trees. During the day, it would be comfortable shorts weather for me so everyone else would be wearing light jackets and jeans. Any warmer and bugs would work their way into the scene. We could throw a football around since it's my scene and I want to remember what it felt like having energy to burn in what my parents would call wasting time. If I bothered having a name for it, I'd call it an investment in enjoying my youth while it remained.

As afternoon became evening, we would get at least one cheerful campfire going. We'd all continue to enjoy each other's company through a meal that would change depending on my mood but chili sounds like a great idea as the temperature drops. Some people would disappear into tents earlier than others depending on how long they had been married. The rest of us (in this fantasy) stay out by the fire and talk about important things like love and loss, joy and heartbreak, triumph and tragedy and maybe even friends who were absent this time. Even while discussing the past, we'd have hope for the future. I don't want to believe that all the adventure of my life is in the past.

The scenery and conversation would change with the people involved. I could see myself in a room filled with smoke that, miraculously, doesn't cause cancer and a list of other bad things long enough to make Chiari ashamed of itself. We would discuss the important ideas of the day, how they relate to the past and how they might influence the future. We would relate to it all through visual arts, music and fiction.

It hurts knowing that I will never know people like that again. It hurts to feel cast out by the person whose opinion was once my source of personal validation. It hurts a lot less while I reach out and touch my memories. If I remember to touch these memories as they were, I might be better at handling those few minutes of agonizing anguish I get each day.

Maddie the cat is doing laps around the house stopping each time by to remind me that I would have less time to be lonely if I simply did what she asked and sat reclined in a chair with my feet up while utterly motionless the way a proper napping platform does. I would sleep but she doesn't realize that I dream.

The Start of a Brutal Day

Yesterday, I slept for something like 14 hours while Melissa was at work. How did I manage that? I had been up for the previous three days trying to fit in with the visit from the New York family. I was very happy to see them though it might have been tough to see through the moaning and groaning. I like being around other people especially my dear family. It's just difficult to show since being around other people causes me terrible pain in and of itself.

Melissa and I watched "X-Men Origins: Wolverine" again. He's one of my all-time top two X-Men with the other being Cyclops. Unfortunately, the movie is a bit of a downer. Logan's girlfriend is murdered and he loses all memory of her. I guess it could be worse. Losing all memory of someone is terrible but you don't have to mourn the good times you've lost. I'm in the process of mourning the loss of an old friend who couldn't fit me into her life after all. No matter how little space I tried to take, it was too much. The good news is that I still have my memories of good times when my life wasn't this nice.

Part of me wants to laugh while the rest of me wants to scream in pain. I'm in agony every day and today seems to be a fresh hell but these are still the good days. I love Melissa and my beloved feels the same way about me. Unfortunately, she gets to work the closing shift tonight so it's just me and my memories. It's worse than that, of course. I've been in more pain than I can truly process since I got up last night. Maybe I slept on my neck wrong which would be one of those obnoxious ironies.

It's almost 10 AM and the sun is nowhere in sight. Weather like this on top of pain that reminds me of times I've been in the hospital is jolly good fun. I want the pain to stop so badly that it's difficult to think of anything else. Trying to focus on helping others is harder than it used to be. I was asked to help a friend of the family and so I did. For Chiarians, there is only one effective treatment which is surgery and that is not a cure. There was one fellow who was held up as the poster child for making a full recovery post Chiari surgery but he died suddenly a few years ago. Apparently, being in great shape and doing things like lifting your own weight over your head against doctor's orders is no perfect defense. I am always careful to note that I am no doctor so you should do what the doctor says if he or she disagrees with me. At most, get a second opinion from a second doctor.

Someone actually keeps track of certain vital statistics and we may have lost as many as 28 Chiarians from the various Facebook communities. Suicide was prominent among those numbers which scares the hell out of me. I was once the sort who took suicide in stride as an option in every day life but I've reformed. Once upon a time, I believed that my life influenced so few people that suicide was a tolerable option. The truth is that I'm pretty connected in this world. Some people actually find inspiration in my life just as I find it in their lives.

Last year, there was a moment when I was sure that I'd never make it alive. Robin Williams had killed himself. I suppose my angle on Mr. Williams is different from most. After a childhood of secrets that hurt everyone yet managed to stay "in the family," I tried to avoid looking at others as invulnerable. When someone acted as manic as Mr. Williams did, I found myself looking for the other extreme. My first reaction was that, if he couldn't make it with all of his resources, I was doomed. At one point, I actually asked an old friend who reminded me of Mr. Williams to keep going. He had been there for me in some of the very darkest of dark days and he stayed strong.

Since I didn't want to be doomed, I thought about Williams and his resources. His money was useless as a defense. All money can do is purchase goods and services. I thought about it and decided that personal relationships are so much more important. If you spend every moment of every day working and making money, there's a limit to the sort of relationships you can develop. I'm not being critical of his friends and loved ones here. I don't know them and I'm certain that there were plenty of exceptions to the rule I stated though it is a mere guess. More importantly, depression pushes you away from the things that help make you strong. You lose the joy in life as activities lose their meaning, you doubt everything about yourself and you believe all the wrong things about yourself.

I started to think about being in trouble personally. There is no cure for Chiari and I was losing ground bit by bit. One of the most important parts of my identity is that I am a writer. That has been in serious danger on a purely physical level. My writing routine involved getting up from the recliner or out of bed, drinking coffee, doing a little warming up and then writing until I was too sick to continue. It was so much more difficult when you can't sleep, you get up to drink your coffee and you don't even make it through the warmups before the coffee provides just enough energy to get to sleep.

The Chiari community and I had a major falling out as my frustration peaked. The conformity of it all was frustrating. "Is Symptom A a Chiari symptom?" The answer knowing little of the other circumstances is probably but check with your doctor. I didn't mind answering that one so much but then there was the question of why your local neurosurgeon isn't as good as the expert who performed my second surgery. Eventually, new patients who should have been asking to have their hands held turned against the experts. There was no solace for me in the Chiari community.

28 Chiarians lost in a year. If that's a reliable statistic, that's horrible. Once treated with surgery, Chiari is not fatal in and of itself. Of course, certain Chiari symptoms can be fatal. If you know anything about the brain's anatomy, you know that the brainstem is not the place where you want something to go wrong. It controls your autonomic functions like your heartbeat and, usually for Chiarians, breathing is a problem. You can have the usual obstructive sleep apnea from some part of the throat not working quite right or you can acquire central sleep apnea which is its very own symptom. Years of narcotic pain medication can harm your ability to breathe in your sleep.

Unfortunately, suicide remains a major cause of death. I'm trying to feel defiant right now but I hurt so badly. I would like to be wrong about today. I wish I were wrong but this day has shown me every sign of being a day long pain crisis. This sucks but I will feel some degree of better later. I will keep fighting because that's who I am.