Teaching or Torment?

(Since I wrote this, the tension in my family has dropped considerably. I considered not posting it at all but remembered something important. No matter how it seems, my motivation in writing was not hostile. I believe a lot of people make honest mistakes and I would like to help reduce the number made if I can.)

This is a subject I've kept silent about for decades because my mother's career was in teaching kids. It made me ill to hear about how good she was at it when I had such a different experience. It's time to get to the roots of why I am such a slob. Why am I so disorganized? At 38 years of age, it's probably too late for me to benefit much but some of you can learn from the mistakes that were made. The thing is that I've always been messy for as long as I can remember. My school teachers made distinct efforts to help me with little success but they deserve thanks for those efforts. 

My parents bought me a Trapper Keeper which is a hard binder in which you insert folders the way you would papers in a regular three ring binder. I never made much use out of these devices in my school life. Why? It always seemed like there was too much else to do. I didn't mind being a slob so much except when it led to the repeated crises I suffered. Yes, my 38 year old mind can make the connections and I've made all the adaptations I can manage like making sure my monthly bills come online where I can't lose them easily. As a child, these things didn't click quite so easily for me.

All my mother and father did was buy me the tool and complain when I didn't use it. I would come home every night with a bag full of (often crumpled) papers that never got organized. As a 38 year old, here's what I might have done with my nonexistent child. I would have asked him to empty out his bookbag daily and open up the Trapper Keeper. We would have done the filing together until it clicked in his mind. When he suffered the inevitable setbacks, we would have started again. Do I believe this is something that every parent needs to do with every child? No. I had a problem and the complaints/threats did nothing to solve it.

The school actually encouraged things like this. One of my teachers initiated a policy where I would record my homework assignments each day and she would initial them. My mother was to initial them as complete. Somehow, this system broke down due to my inability to get the assigned work from my desk at school to my home. This probably had something to do with the lack of organization mentioned above. Due to the support I received at home, the system became nothing more than a method of embarrassing me. After all, I could do anything I put my mind to doing according to my father and I was failing at this so it had to be a lack of effort. 

Cleaning my room would have been a joke if it hadn't been the source of so much hostility. I was told to clean my room so I did. I managed to pick up everything and vacuum under it all then put it back in place. I was told that this wasn't what was expected of me but then no further instructions followed. There were plenty of threats but never any useful measures.  

Unlike the Trapper Keeper situation, I lack the ability to deal with this even today. It's a matter of degree, of course. I do understand certain concepts. On the other hand, the vast majority of my clothing is very casual these days. Nothing is harmed that I can see by having a dirty clothes pile and a clean clothes pile. The concept of doing more falls under the label of wasted effort especially now that I have so little energy to offer. On days when I am in more pain than usual, the concept of walking used (but reusable to me) dishes to the sink where they will simply mix with the truly dirty dishes and become disgusting is laughable. Once upon a time, I had the energy and the strength to wash dishes once or twice a day without undue suffering. Those days are long past. My beloved's health issues are her own to discuss or not discuss as she chooses. I'm the one who was taught to value myself so lowly that I feel obligated to "earn my oxygen" by trying to help others with problems like my own. Earning my oxygen is my own way of summing up how I try to deal with those lingering anxieties and feelings of inadequacy my parents taught me. 

Things are going to get a bit scatological now so consider this fair warning. I'll try to avoid the most lurid details for the sakes of everyone's appetites but I was born with what the doctor's call limited bladder and bowel control. What this truly means is that I can go but I can't stop or prevent myself from going. This is an unpleasant facet of my life that I have learned to simply accept for the most part. Those who have chosen to be my friends and family do their best to accept me for who I am. First and foremost of these people is my beloved Melissa followed by the Allen clan, my family of choice. 

I wrote that I have learned to simply accept this for the most part because there is a whole laundry list of adaptations I've learned to mitigate the symptoms. One of these is called a "bowel program." I'm going to use it to help illustrate how not to teach a disabled child to adapt. When I was younger, I suffered from what even I consider an excess of bowel accidents. I lived in terror of them throughout most of my childhood and learned to be ashamed of them because I failed to follow the "bowel program." I learned the term from my father but never a single detail except those he made up to suit his prejudices of the day. 

Let's start off with the facts. Your basic bowel program is an attempt to simulate what healthy bodies do on a regular basis. The pun was unintentional but it is usually called "staying regular." I was in my mid-twenties, at least, when I got up the courage to get this information from my primary care physician. She gave me a very simple set of instructions that I'm sure most of you learned as basic toilet training. Let me put this stuff in chronological order in terms of my daily life so that it will best make sense.

Have much needed ritual cup of coffee when you get out of bed. Caffeine and alcohol promote "going" so you can train yourself to go after that first cup. Unless you feel an emergency coming on, feel free to read the paper or do whatever you do while drinking that first cup. When you are done, plan on spending some time in the bathroom. Clear yourself a block of time so that you and the bathroom are both free. Some people like to bring in reading material but I'm not that liberated yet. I was taught to get in, do my business and get out.

At the end of each meal, go to the bathroom and see if you have to go. The end of the meal is a casual concept for those of us who like to linger over our food. Eating is another activity that promotes going. Get a bathroom stop in before you move on to your next activity.  
There are no dietary restrictions related solely to a bowel program. My doctors and I have isolated stress and lack of sleep as the two main causes of irregularity. Obviously, eating foods that are exotic to you will have an unknown effect on your regularity. Some foods may have an effect on you but you should consider those effects as part of a whole. Those of us who suffer from chronic pain are more likely to suffer from chronic constipation because of our medicines. If you start to feel backed up, you might want to consider that Mexican dinner that disagrees with you. 

Last but not least, please remember that I am not a doctor! If you are trying out adaptations for a better life, my ideas might work for you but run them by your doctor first. I do not know if you have a condition like my hiatal hernia or, God forbid, an ulcer. My point is not that you should listen to me. My point is that you should be careful whose advice you take. Doctors are the best choice.

Getting back to the major theme of this post, my father decided that he was an authority on bowels. My doctor and I had a laugh out loud moment when I asked her what sort of bowel consistency I should strive for. She told me peanut butter and that was my father's signal that something was wrong. Thanks to my father's good intentioned but very misguided teachings, I go through unnecessary constipation. Pardon the pun but the man taught me to shit bricks.

Why was he so misguided? I believe the main difference comes from the separate motivations of my father and a doctor. My father is ashamed of me and has been since the days when he accompanied me into men's room stalls. He saw bricks as easier to manage and hide than peanut butter. I was willing to try anything to please him. He and my mother spent my young teenage years analyzing everything I did. Thanks in part to a lack of proper guidance, I had more bowel accidents than I was wiling to accept but I never said anything like that because my father was freaking out enough for several people.

I remember trying to remind him that I had a handicap and he reminded me that others managed better control than I ever did. He informed me that I was putting my mother through undue hardship. I couldn't make the accidents stop but I could keep my mother from suffering. Thus, I did things like re-wear the same pair of underwear until I got enough time alone in the house to do my own laundry. This was foiled by my mother counting my clothes and not coming up with enough underwear. I'm sure she had nothing but good intentions but her good intentions spoiled mine. After that, I started setting aside the soiled pairs in a hiding place so that I could wash them later.

As usual, my mother and father were all too eager to examine what they saw as my extremes of behavior and question my sanity. They never looked at the root cause of the problem. Their shame at having a handicapped son drove them to increase pressure on me until I looked for what even I consider to be odd solutions. They never seemed to use any of my mother's vaunted teaching skills to help me. Their goal was to label me as something other than normal. I was someone whom they could torment because I wanted to please them.

Rage and the Pain

I have had it! I am so fed up that I find it hard to care that things can always get worse. Certain people in my life - on the extreme verges of it anyway - have lost their tenuous hold on reality. Certain people is, of course, code for my parents. It's not very good code if I give it away but that's how angry I am. I am sick to the point of wondering how soon I will die and they have used the excuse of the great flood to hold my feet to the fire. They seem to expect me to sort through 12 years of my life here and pack up what I want to keep in the veritable blink of an eye. Since I know I want to leave and I decided to be honest with them, they have lost all pretense of civility.

For a little while, I saw things through their eyes. I'm this terrible disappointment and all. The truth is that they made me top to bottom. I'm good at certain things because I had to be in order to survive all the emotional child abuse. That's right! I'm calling a spade a spade. They are damned lucky that I didn't open my mouth when I was a child. I'm sure it's too late to sue them now for creating this thing that lurks inside of me.

What thing is that? I'm talking about the urge to kill myself. After my latest conversation with them when I let them do all the talking, I curled up into a metaphorical ball and fell to pieces. That's when I used one of those survival skills that they taught me. I attacked the problem with logic which is something inaccessible to insane people. I'll let you draw your own conclusions about the insane people. Who would benefit from my death? Allow me an agnostic moment so I can question my sure acceptance into heaven. My religion has certain problems with suicide anyway so I might not have to have that agnostic moment but that's what it feels like. My wife loves me so she would be devastated. Even my most optimistic projections would involve her going through hell on earth before her life got better again. The only people who would benefit would be my parents so that sorta kills the revenge motive. Why does the urge to die by my own hand still haunt me? If it isn't based on logic, I believe it is based on all those years of being brainwashed into believing I am worthless.

"The only thing I have to offer is my brain," said my dear mother and father. Guess what? Thanks to their genes or some long denied mistake my mother made while I was in the womb, my brain is fucked up! They seem to believe that there is some way of making me better but I'm avoiding it because I prefer this life. Let's attack those two points separately. First off, my second surgeon may be the foremost expert in the world in my condition. He told me to my face that there is nothing else he can even try to improve my condition. There was a possibility but further testing showed that it might very well kill me. Medical ethics prevent him from trying the surgery even if I were willing to risk an unacceptable chance of death. We're not talking about dying from an unanticipated complication. The actual surgical objective would be what killed me. Game over!

The second part of their apparent belief is the one that truly annoys me. I do my very best to make the best of everything but my life sucks! Your lives probably suck to the same degree if you are the fellow chronic pain patients that this is intended for. We don't have the option of lying down and dying so we make the best of things. We use the tools given to us for as long as they are available. My father's kind gift of cable TV was much appreciated as a tool to help me through the worst pain. When he pulled it back, I was careful to say nothing unkind because I don't walk in his shoes. He might very well be struggling to make ends meet and hiding it from me. The same thing applies to the reduced rent that we were given while living here.

My mother had the gall to tell me that I can't afford to live where I am now. It's part of the miserable shame game that they have played with me for as long as I can remember. Then again, I was pleased to hear that she had paid off the mortgage and that my meager contributions were covering the association fees, the taxes and the homeowner's insurance. I was exceptionally pleased that I was not putting them through any hardship. That's a laugh. My mother is hoisted upon her own petard. She needs to learn better insulting skills from her husband.

Her intent was to show me how dependent I'd been on their generosity but I knew that already. I gave her the opening by expressing surprise at the actual rates being charged out there. My intent was to praise her for the generosity but to reinforce my reasons for needing to leave. I offered them nothing but honesty and the sort of criticism of my packing performance that you learn being raised like I was. Nothing I do is right and nothing can deflect criticism. I should just die for them...just kidding.

There is a reason why I use every tool I'm offered. I live in pain the likes I doubt either of them has ever felt possibly barring my mother going through labor pains. It takes practice to let the background pain go and save my breakthrough pain meds for the times when they are needed. My choice is to curl up into a literal ball and moan all day. This is very hard on the vocal cords as experience taught me.

Getting through the easiest of days is an accomplishment for me and for my readers in chronic pain. We have to ignore the unintentional advice of those who would just take handfuls of pills and kill their livers or those who say they would go insane. It's tough to stay sane in the commonly used sense although actual clinical sanity is stronger than you might think. In the commonly used sense, my parents drive me insane whenever they touch my life.

Getting through those easy days requires concentrating on the requirements of life as a chronic pain patient. We need to follow our prescribed medicinal routines. I actually have to use my tablet computer to track my one medication used once every three days or risk days like today. On top of all the wild pain from the wet weather outside, I felt this awful electrical tingling in my muscles. When I took the risk of not blocking it out, I realized it was the familiar sensation of not changing my patch on time. Oops. My bad. I paid for it.

One of the things we chronic pain patients need to do is get regular rest including more sleep than the average person. Knowing that my family may decide to contact me at any given moment deprives me of regular sleep. I find myself not wanting to let my mind drift because I find myself lingering on the insults my father delivers on a regular basis when he contacts me at all. Let's think of a recent insult from as recently as yesterday. "You just sat around in that hotel room and didn't think to come and clean up."

Okay. I was silent about this on the phone because I didn't think you had the lack of sense to say such a thing. The "pipe" burst on a Saturday afternoon. For days before that, I was so tormented by weather related pain that I got little useful rest. My chance to sleep was disturbed by a river flowing out the bathroom door and a collapsed ceiling downstairs. Nonetheless, Melissa and I reacted rationally. We called the insurance company to get our marching orders. Was it even safe to remain in the house?

The insurance company reacted rationally and sent out a water damage mitigation service. It was Service Master and I had seen their TV ads run before. I mention them by name here because their tech did every single thing he could to do his job and make things easier on Melissa and me. However, having a stranger in the house pulling down what was left of the first floor ceiling, running assorted drying equipment and making a hell of a lot of noise was traumatic. It would have been traumatizing to anyone which makes it 100 times worse for any chronic pain patient. Once again, I know this from experience obviously.

The insurance adjuster pulled through for us and got a very nice hotel room for us. It got upgraded to a suite by another very kind company. I got there Wednesday night and spent the rest of the week recovering. By the time we reached the weekend, I had recovered enough to worry. Yes, I recovered enough from the trauma to experience severe stress. Why had I not received any marching orders? On Monday, I called to ask for them but the adjuster was busy dealing with a tornado catastrophe. On Tuesday, I received a false alarm that sent me spiralling down into near collapse again but it seemed to work itself out.

That's when I got the truly bad news. My father was involved and calling the shots. It took my own father two days to return my phone call and that Thursday call involved no marching orders. On Friday, he called me to insult Melissa and me which I took in my usual silence. There were no practical instructions given. Was it safe to return home? I didn't know anything so please forgive my pathetic ignorance. On Monday, we managed to return home and get me through pain doc day which featured a freaky storm that took me from feeling good for me to almost landing on the floor. The medical staff was suitably freaked out since none of us looked out the window. We assumed it was still sunny. Regular readers will know what even the best pain doc appointments do to me.

I can't remember the exact day I got my marching orders but I started following them immediately. I was already sorting out and removing trash so that left me books to pack. I built a box that the contractor provided kindly and packed it. It took a lot out of me but I felt no sense of achievement. My father wanted the job done not done realistically. Thus, I tried to continue and mostly ended up on the floor a lot. Despite this, I continued my work.

That brings me to the final insult and the one that bothers me the most. "What's Melissa doing while she's off? So, she's working nine days straight with roving days off? That leaves time to get things done." I know you don't care but Melissa is sicker than she lets people see. Thankfully, she can sleep through almost anything so she gets enough rest to stay in the fight at work. She just got a top notch review from work and we're on a promotion track. (She doesn't mind when I say we despite the fact that she's the one doing all the work. I love that about her.) Due to her chronic and likely progressing illnesses, that leaves her little time or energy for anything else.

To paraphrase a movie, don't mess with her if you want to have a fight over toughness. She's far too good for you. Stick with me as your victim. Then again, my name is John Stapleford and I'm getting you out of my life. ("My name is Andrew Sheppard and I AM the President.") I just hope you don't send me to my grave first.

Exactly What You Need

I have written before about things that could be done to help me cope with my disabilities but I never thought things would get this exciting. Two Saturdays ago, I thought I heard a downpour in my sleep. Then, I looked up at the bright sunshine in my face and realized something was very wrong. I found the source of the flood and shut it off between the wall and the toilet. Crisis averted, right?

When I went downstairs, the ceiling was on the floor. A big piece of ceiling was where my head normally rests when I nap. I had decided to go to sleep in bed for once. I was joking about this being a good thing but you might call it a miracle. No one was hurt. The insurance company has done a good job helping me so far.

Unfortunately, five miserable days followed. I am badly affected by things like noise, stress and strangers around me. Water damage mitigation is all about those things. On the day when they finished, my insurance company got me out of the house and into a beautiful hotel room. This exceptional company will be the topic of another entry about those few companies that go beyond being merely handicap accessible.

Things seemed to be going well until I was notified that the man of my nightmares was in charge of the decisions concerning house repairs.

While there might be a certain degree of misunderstanding involved, the man holds me and my little family in contempt. Melissa and I realized that we wanted to live elsewhere. The man of my nightmares was only about third on our list of reasons why. The main reason is my health. I fall on the stairs at least once a day. Sooner or later, I will land on my head and die. The stairs are painful even when I don't fall.

We need a smaller place with reliable maintenance. I can't live here so I have to find a smaller place.

Survived Again

Medical testing is not anyone's idea of a good time. I figured I should start off with that so no one gets pissed off. I just know that my terror of something as benign as a sleep study goes beyond the typical. It's one of those things. I do not fret over needles anymore and they tend to be unpleasant as well.

Sleep studies are actually more painful for me. The tech was even kinder than most yet the process of sticking electrodes to my head is painful no matter how gentle the tech is. That part is easy to explain. The tougher part is explaining exactly why sleeping on camera freaks me out. I know that no one can use an EEG to read my mind but it's invasive at least for me.

Add in the fact that I was already exhausted and the idea of sleeping on a schedule and you have the ingredients for a train wreck. That is where this tech bent over backwards to make it work. She let me set the schedule and so I knew that I was capable of sleeping.

The funny part is how the intense pain drove away part of my panic. As long as the headache eased, I could survive the worst case six hours of boredom. In fact, my usual sleep pattern of little naps held. I had easy access to the time on my tablet so I could confirm the passage of time.

Getting back to the point, the hardest part was walking in there to face my fears. Whatever you fear, you deserve a pat on the back when you face them. That happens to be the worst part every time.

A Smidge Better

The world isn't ending. The sky is not falling. My mood simply went very dark for a while. A long time ago, I was taught to dislike myself. I was taught about good things and bad things that you could be in life. Looking back, it isn't surprising that I had far more of the bad traits than the good ones. I liked the wrong things especially where my diet was (and is) concerned but it went beyond that. I was destined to be unloved and to have bad things happen to me.

I thank God that I met Melissa and learned that I was loved for who I am. Sometimes, I'm surprised by how few illusions she has about me. A lot of those bad traits simply are not bad to her point of view. She knew that I enjoy eating and drinking beyond the point that is healthy before she fell in love with me. We're compatible like that.

I went to her full of darkness and confessed those bad traits. It was funny how petty it all seemed out in the light. I don't mean my darkness but the things I had used to justify a moment or two of self loathing. I was worried that I was drinking too much and that triggered two reactions in me. The first was my hoarding instinct. I was digging into and taking the risk of depleting my supply of something. The second was the deeply ingrained fear of being an out of control glutton. After all, I spent most of my young life on diets that made me crave food more than anything. At the same time, I was taught that craving food was wrong.

Here are the actual facts. I am in control of my drinking according to someone who would recognize the signs very easily. Belgian Ales happen to be one of my favorite things in the world. I have been drinking more than usual because Belgian Ales were on sale including all of my favorites. Once exposed to light, I realized that Belgian Ales are the chocolate chip cookies of beverages to me. I am far worse about chocolate chip cookies than Belgian Ales because chocolate chip cookies tend to be cheaper.

For a little while longer, Belgian Ales will be on sale. I should enjoy them now while I can. I won't drink them until I'm drunk because that would be a waste. You can't taste the finer flavor notes while drinking that much. It took me 12 hours to go through a 750 ml bottle of Ommegang Abbey style ale. That's not getting drunk or wasting anything. I tasted every drop. If we should run low, we might even go out and get more.

Being in constant pain, I must have something to enjoy. Belgian Ale is a lovely treat. If only I could have some Belgian chocolate and German food but I'm not getting those. We're not made of money and my sense of entitlement is not that oversized.

I'm okay. The darkness has been purged for now.

A Different Sort of Pain

I haven't slept well in a while again but it isn't the usual pattern. I am not afraid to sleep and dream now. I welcome the escapism. I welcome sleep as an escape from being me.Right now, I cannot stand myself. I am a greedy whiner who can never have enough. I have managed to become the guy who wants to have his cake and eat it.

My cake is Belgian or Belgian style beer. My favorite liquor store had a tasting of Belgian beers and then put them on sale. I live for this event to a surprising extent. Most of my new friends show up and we chat as we drink beer and eat cheese. I noticed the potential problem that same night. We spent a fair amount of money on beer that won't last very long. Every time I take a sip, I experience the expected delight and then I feel a loss.

Intellectually,  I know that the sale is still going. We could afford to replace every drop I have drunk so far. The problem has nothing to do with the beer. My problem is that I do not like myself at all. Being alone with myself is a grueling experience. Indulging in Belgian beers makes it a little easier. If I explained it to Melissa like that, I am sure she would get me more. .bank account willing. Having that kinda power scares me.

The same metaphorical voices in my head that make me ashamed of so many other things make me afraid of being a crass manipulator. The God-awful truth behind the title of this entry is that I am getting a break from the worst of the physical pain. It's not always one or the other because there are plenty of days filled with physical and emotional pain.

When I get a break from the worst of the physical pain, I think I have some need to process the other bad stuff. The current processing method of self hatred isn't working. My head is filled with bad ideas like causing myself intentional physical pain.

When all my ideas are bad, that is a legitimate excuse to do nothing.

The old saying about getting out of a deep hole applies here. Step 1:Stop digging!

Nightmares 103

I was back in high school this time standing at my locker at the end of another school day. For some reason, I was in no hurry and I remembered that I had graduated. The few papers and books in the locker felt more like artifacts and I was back to my true age. Someone cleared their throat behind me and I turned to face her.

The girl who had guided my very first steps away from the life of self destruction I had known for so long was standing there smiling. Her eyes took in my cane and absorbed it without comment. She just greeted me like an old friend.

I knew what I wanted to say immediately.  "While I have the chance, I wanted to thank you for all that you did. You saveme. "

She smiled in her way. "You thanked me before and I appreciated it but it wasn't necessary. You helped me too and you were a good friend. "

"I guess I forgot telling you that before. It's been so long since I've seen you. "

"That won't be a problem anymore.  I just got a good job nearby so we will be seeing more of each,other. "

That's when I woke feeling disappointed that it was only a dream. My friend remains mysteriouslymissing. It was a good dream and it reminded me that she probably knows how muc7she mattered and why. Dreams like that are an antidote to my nightmares.