Thanksgiving

Thanksgiving is a bittersweet holiday for me. I know you're probably thinking that I'm rude for complaining but I'm not complaining...much. The sweet part of it is a relatively recent innovation. For the longest time, I thought it was the most pointless of all the holidays and that was back when people made a big deal of Columbus Day. Melissa made the difference, of course. She pointed out to me that Thanksgiving didn't have to be terrible. I didn't have to meet certain standards for her to love me because she just did. I was a little embarrassed at the idea of stealing her family but it just struck me - and I mean just now as I'm writing this - that I wasn't trying to steal them away from her. I just wanted to be included.

I wanted to be included and they wanted to include me. What a concept! The bitter part of Thanksgiving and the other holidays is that I have such vivid memories of being unwanted. Depending on how angry the concept makes them, the family I was born with might accuse me of being delusional or they might be angry enough to have given up completely. I hope it's the latter personally. It's very easy for them to make the case that I was wanted. After all, they never once failed to invite me to Thanksgiving dinner when I was living with them! After I was finished raking the leaves and cutting the grass, I was perfectly welcome to dress exactly the way they wanted and then have them watch every bite that I ate as if they expected the inevitable weight gain to be visible immediately.

It was either Christmas or Thanksgiving dinner when I was introduced to how most of my fellow Americans do that particular holiday. It might have been both but the important feature was the fact that Melissa and I were invited to have dinner with Linda and Doug Frey and their family. It was wonderful. We all ate in front of the TV watching football and no one gave me too much of a hard time about my Dallas Cowboys. We probably lost the game if I'm thinking of the right year but that was forgotten in a pleasant buzz of food, drink and pleasant conversation.

It's not very important to me that I get this placed exactly in time but I remember being very tired that day to the point of not wanting to go out. I don't think that I was sick with Chiari yet. It was probably a good, old fashioned tired feeling from working too much. Yes, I think I wrestled with the boys both against me at the same time. It's been a long time for sure since I think both "boys" are about seven feet tall these days. After eating, I remember napping for a while along with almost everyone else. The only thing wrong was that I was hungry again and I didn't want to look like a pig twice.

Melissa led me to the kitchen where almost everyone had reconvened to demolish more food. To me, this was living like a sultan.

I'm not sure that I've ever gotten to enjoy a Thanksgiving or Christmas dinner with my New York family. What I do know for sure is that I am most thankful of all for the fact that I got to have this life and love with Melissa. We were sitting downstairs not really together and doing different things when I realized something. There's a different feeling in the air when she's in the same room with me. We don't have to be doing the same thing. I first noticed this when we were still learning to live together at the apartment. I was reading one book and she was reading another when I told her how much more fun everything is when she is with me. It was just an out of the blue remark that holds true today almost 20 years later. She just brightens up the room.

I am exceptionally thankful for my three cats even when they demand that I sit absolutely still or go to sleep so that they can use me as a stable napping platform. Before the kittens (my babies will always be babies), there were hours upon hours that I spent utterly alone. They must be on the bed together because they have permitted me use of the computer without any complaining. Don't tell her I said this but Madeline's food alarm clock is one of the main things that helps me note the passage of time. I just wish she would pick a method of telling me she's hungry that doesn't involve stepping on painful places. (You only think I made a dirty joke. I hurt all over. *grin*)

I'm not ecstatic that Melissa has to work today but she loves her job most days. I love seeing how good she is at it. She makes enough money for us to get by when combined with my disability pay. It bothers me that I can't work and so she must work but we've learned to accept that as a given in life. If that's a given, we should and do make the best of it. She has her space and I have mine. I get to write and pursue my dreams along those lines. If you had told the teenage me that I would have dozens of regular readers, I'd have been in orbit. Now I know that's unremarkable compared to the top names in the field but it's good for me.

And I need to lie down ASAP so I wish you all a Happy Thanksgiving. Also wish healing for those affected by violence. My PTSD isn't from brain surgery so I feel for you. I wish you the best and my thoughts are with you.

Recovery Is Slow

One week ago today, my arms and legs were buzzing like a power station while all of my limbs were twitching in different directions. All of my hope was placed in the pain doc appointment the next day and I hoped that I would feel better that same day. After all, I found what amounted to a dose of my anti-anxiety pills that you might find in couch cushions. It wasn't even a full dose but it was just a little bit of relief anyway. This made me believe that I would get better the same night that I took a full dose of my medicine last Monday.

The high voltage tingle in my arms and legs did stop or slow down enough for me to be semi-functional. I'm pretty dysfunctional on my best day so this didn't scream clue at me. When I wrote my previous entry, I was surprised at how difficult serious writing was. My focus was off and I was suffering from a case of that lovely condition where I'm too sleepy to do anything but too physically wired to sleep. I could only catch sleep in tiny amounts and that sleep was so full of nightmares that it hardly counted. I dreamed that my father was asking me why I would think anyone would ever be interested in my writing. This actually happened, of course, starting in the fourth grade and it never truly stopped until we stopped speaking to each other.

I dreamed that a teacher confronted me about not having a required book. The book was out of stock when I had arrived at the book sale so I could not purchase it that day. This was back during the time when I was forbidden to have my own income but I knew that my integrity would be questioned if I asked for more money or I'd have to hear unpleasantness about my school. Eventually, I learned to dread those classes with incomplete book lists. In German class, we were required to buy our own dictionaries outside of school. I can't remember if this was just after the main supply ran out or if it was just never ordered by the school. I'm not blaming my dear high school or my college. I am among the proudest of proud alumni for both St. Marks High School and the University of Delaware.

The one person I might have seemed to blame would be my German teacher. I had two of them in high school but the first only lasted a year to the delight of certain class hooligans. (You know it's true. Considering how terrified I was at the time, I have surprisingly fond memories of the hooligans who were a graduating class ahead of me.) The second is still around as far as I know. Sorry, Frau Lehrerin, it must have been terribly annoying to have a student who seemed to refuse to get a lousy dictionary. I just wanted you to know the truth even decades later. In those pre-Internet days, my only recourse was to make up words when I didn't know the real answer. By the way, Frau Lehrerin, isn't her name but her title. You use constructs in the form of "Mister Doctor" or "Herr Doktor." Frau Lehrerin translates literally to "Mrs. Teacher" but is used as a title. I hope that's right anyway. The brain surgery could have caused me to swap teacher and one of the words for student in my head.

Anyway, I logged on to write an entry yesterday with the usual content. This is what I'm going through, this is what I'm doing to treat it and I'm going to soldier on so you can too. There's almost always a subtext reminding people that it's okay to complain. If you go through anything like what I go through, complain away when you need to. It might help you feel a little better. Of course, I got sidetracked and went into a political rant. I stand by every word though some additional words of explanation would have been helpful. When I finished, I realized that the Chiari related content was lower than usual so I was careful where I posted it. I kept it to two places: my timeline and the Chiari "lack of" support group called "Chiari Uncensored."

Someone came along to kick me out of the group, wrote a rude comment and I got angry. My words failed me. Instead of telling people that they could go ahead and kick me out of the other groups, the closest I could come was something about helping me leave them. I thought that this was conciliatory and stepped away only to return in the sixth grade. My sixth grade year was the year I discovered what it was like to feel suicidal because of some very accurate bullying. I had not decided to act on it until well after a school administrator tried to help. I mistook this for an attack because that's what I was getting everywhere else and launched into a couple decades of misunderstanding. Thanks to my dearest Mommy, I was unable to confront the situation directly. My mother worked at the same school and was always convinced that she was a few days away from being fired. Maybe it was her poor teaching. I don't know. She might have been the best teacher they had but I do know she was always terrified that my behavior would result in her getting fired.

In truth, I was never able to confront the situation directly but I was able to piece together what happened through other sources later. The administrator did not repeat my panicked lie to anyone. I had filled out a questionnaire in my usual state of repressed rage writing something along the lines of wanting to find an easy way to die. I wrote that because it was true on bad days like that but also because I wanted to hurt some people who would waste time thinking about some random kid. I was furious when the anonymity of the survey was defeated by my own carelessness. I'd left a reference to spina bifida in there and I happened to be the only kid in the whole school with that particular birth defect. When confronted with this, I gave a panicked lie and blamed another kid with a (completely undeserved) reputation for getting others into trouble in creative ways.

So, there I was in the sixth grade just pondering the idea of suicide with no concept of how to act on it. My parents became concerned about my mental health a short time later leading me to put two and two together only to get 17. It's awful what you can believe when your information sources are so limited.

A month has passed and thinking about my sixth and seventh grade years is still enough to send me into a bout of nameless dread. Some school assignment has been left undone. I just double checked my records and paid the one bill that still needed to be paid. That wasn't the source of the dread. The dread is nameless, faceless and attached to no reality. It saps the energy from me most days and robs me of my rest. There was once a name for this dread or two names to be exact. I called them Mom and Dad. I should be at least trying to sleep right now but there is some small part of me that believes they can get at me through my fortress walls.

They would not hit me or hurt me in any way that would show on the outside. Instead, one of them might make a perfectly reasonable assertion about how my life could be improved. I would accept that my life would be better if I did what they said. I would simply feel the need to involve reality in the conversation. Your suggestion would improve my life but I am physically incapable of carrying it out. They say that I must change as if the emphasis would change the reality of my limitations. Human beings don't live like I do. They inform me that I don't qualify as human in their eyes. Without breaking a single law, they would wound me mortally.

After every confrontation, I spend days trying to stop sinking below the water that would drown me. I'm told, "don't let them get to you." "Consider the source" is another good one. The source made me chocolate chip cookies and chocolate truffle brownies and took me to baseball games for more than a decade. The source put me on this earth, raised me up to be who I am and now I repay them with rejection. I wish there were a better option but there isn't.

I titled this entry "Recovery is Slow" not "Recovery is Hopeless" or "Recovery Won't Happen." For years, people have seen what has happened to me and they were shocked. They were shocked because of what I've had to survive already. I was shocked because they believed me. I was shocked because I learned about people who had kids who failed to live up to their full potential but loved them anyway. It's difficult but I improve bit by bit. It's harder to think this some days than it is on others: my parents are more messed up than I am. I don't blame them because I know a little more about their pasts but that doesn't make it my fault. It is messed up to torment your own children.

I recover in other ways as well. After a few weeks of taking all my medications, I can do some things again. I can read and I can walk around the house a little without being crippled by the constant twitching. My symptoms have meaning again so that I can pull on those many levers and get the expected results. Writing is still more difficult than I expect it to be. I haven't been able to get anything done on the disability book in weeks but that's probably something to be expected. I'm writing about things that can hurt me on the best of days.

Even better, I might be able to make a big gain in the near future. A friend from gaming listened to me describe how a few small changes could make my life so much better. My inability to walk trash to the dumpster is the thing that bothers me most. Therefore, my friend who started off as "just" a gaming friend is trying to organize getting me some time with a pickup truck sort of vehicle and someone to drive it. This is a big deal because I can catch up and live like a human being for a while. Even just the thought of it has given me one of life's great tonics: hope.

The Death of Hope

Sometimes, I forget that major projects take a long time. I've been working on a book about disability and it turned into the hardest of all slogs. 40 pages took me a couple of weeks and I know that I repeated myself too much in that short span. It seems that I was trying to avoid offering advice that was too specific to me forgetting that personal anecdotes might be the best thing I have to offer. It was going slow already when bad things started happening one after another.

First off, we had a couple weeks of drenching rain. Rain equals pain and it feels oppressive. There was a sudden shift from rain to cold with the additional unpleasantness involved and then I hit the misery jackpot. Somehow, the pain doc's office and I combined to cost me eight days of extreme symptom spikes. There was no sleep to be had and the lack of sleep just collapsed all of my other defenses. By the end, I twitched for days straight even if you don't count the car ride to the pain doc at the end. The very end was its own sort of awful with all four limbs, my neck, my back, my stomach and I lost much control of my arms and legs. It was exciting to walk around the doctor's office while my knees refused to do what they were supposed to do. My cane was just as ineffective since I couldn't depend on my arm to stay still.

Just as I was starting to recover from that disaster on Tuesday morning, Election Day happened. For some reason I hope I'll never understand, most people stayed home and did not vote. I am not sure if the voter suppression campaigns worked or if people were just too lazy. While the majority stayed home, a minority of eligible voters joined the right wing in a suicide pact. With all the problems going on in the world, the majority of those who voted chose candidates who have devoted themselves to making things worse. This isn't all partisan complaining because President Obama is seeking to complete "Free Trade Agreements" that will benefit no one but the very rich. Without Senate Democrats blocking the Trans-Pacific Partnership, it will pass easily since the President is not the liberal that some accuse him of being.

Our few industries with strong management/labor cooperation will be exposed to tactics like "dumping" which is defined as selling products on the global market at below cost. Nations like China and South Korea can afford to absorb the losses in their government back or government owned industries while our domestic industries have no such backing. They cannot even count on a Republican Congress to pass punitive tariffs.

Maybe you hate labor unions. The "Fouled-Up" Trade Agreements will hurt all American consumers as the profits of multinational corporations will be protected over consumer rights. For example, the US Food and Drug Administration made a rule requiring all meat sold in US grocery stores to have labels telling you where the animal was raised, where it was slaughtered and where it was packaged. Without labeling practices like these, our FDA will be rendered meaningless. Mexican and Canadian meat-packers appealed to global trade organizations claiming that country of origin labeling would hurt their profits. Why did they believe Americans would buy meat based on local origin despite the price advantages enjoyed by multinational companies? All things being equal, food bought closer to home is higher quality regardless of origin. It may travel safely but it does not travel well. Of course, all else is not equal and even our under funded FDA makes local mass market food safer than what is made in other nations.

The only things that will get done under this next Congress will be bad things. There is the Foul Trade Agreement and then there is the Keystone XL pipeline which will make some of the world's dirtiest oil profitable. With climate change denier James Inhofe chairing the Senate's most powerful environmental committee, those of us who care about the environment might remember the days of "Drill, baby. Drill!" fondly. The profits from the Canadian tar sands oil that will not be sold on American markets will stay in Canada. I like our neighbors to the north but this is absurd. We're risking horrific spills from a company cited by the Canadian government for poor manufacturing practices and we will gain nothing in the best case scenario. The worst case scenario will poison water used by millions, unleash fires that will be made worse by the accelerated climate change.

Right now, you're probably asking me why my pain blog has been overrun by politics. The reason is that my nation's suicide pact is very stressful for me. So long as I remain in Delaware, I'll escape the worst of it personally. Hope for a better world is one of those things I cling to that keep me alive. I have been holding out hope that some agency out there would help me with some of my specific problems. Since I can't walk to the dumpster, I had hopes of the Federal Government restoring aid to the states. I had some slight hope that my state or local government would provide me with some assistance in getting curbside trash pickup which would save me from eventual unpleasantness even if you include nothing unforeseen. I would have liked to get mail delivered to my door as well.

Thank you, Republican voters. Thanks to you, there is a good chance that I will die in a fire someday. Every single one of you has hurt me individually along with your attack on the nation as a whole. Some of you will be very rich at the expense of hurting millions. The rest of you will have to suffer through the fall of society with me. You're right that this election probably won't lead to the death of the government but we've lost yet another chance to make things right. Thanks a lot. The good news is that I can swim.