The Struggle

When I write about a day to day struggle to keep going through pain, a lot of you know exactly what I'm talking about before I finish the first sentence. The same thing applies to various other chronic illnesses especially the invisible ones. It's a struggle to manage the current that tries to pull you under the water and drown you. Remaining still for too long hurts but so does moving. You can put one foot in front of the other and get somewhere even if it's not very far. There's a sneaky little trick of the sort that "the kids" might call a life hack which happens to be more literal than most. If you're alive, you're doing well.

Unfortunately, there's another similar struggle that's far more common than most believe. I'm referring to psychological and/or sexual abuse. In this case, you and your abuser appear to engage in a pact to drown you so that it looks as if he tried to save you but failed heroically. The truth may not set you free but it's better than dealing with this undertow. The truth is helpful because there are falsehoods that are accepted  so easily that it's common to call them medicine. "It was a bitter pill to swallow." I'm talking about the false connection between your personal strength and how well you survive a history of abuse.

"In the end, his strength failed him as he succumbed to mere memories from decades ago." Believing your abuser more than yourself is a problem with layers each deserving its own Charlie Brown scream. "Well, she grew up the same way you did and she turned out just fine." That's a fun one because it has so many factual flaws in it. First of all, no two people grow up under the exact same circumstances. Second, I've dealt with spina bifida my whole life. When you factor that in, I turned out to be pretty well adjusted.

"John likes to blame others for all his problems. The simplest solution is often the correct one and so John is completely at fault." The devil is in the details here. It is true that I make my share of mistakes and there are times when I make more than my share. This was a near deadly attack against me too many times because there were at least two schools of thought. One was that I liked to blame others for my mistakes to avoid having the blame put on me. The second was that I was a real arrogant SOB for believing that I could avoid making the initial mistakes.

Either I was an arrogant SOB who believed in my own perfection, someone who blamed others for all his problems or could there be a third answer? I had been advised that I was too smart to fall short of near perfection The proposed solution to this problem is to just do what I'm told. When I was five or eight, this wasn't a consideration. Didn't everyone do what they were told? When I was ten, I had believed that I was a great many negative things long enough to start considering suicide regularly. Wouldn't everyone be better off? (The answer is no just in case I'm not being clear.) I was ten years old and in the fifth grade and the great puzzle of life seemed to require my death. All they wanted from me was for me to do my best which meant something unobtainable.

Call this a tangent that got out of hand if you'd like but my point is about the struggle. I'm struggling to get through a contest where winning and losing is measured by life and death. By those rules, I am way ahead adding whatever I can to the cause of life (as I define it not in terms of any political debate) by continuing on trying to get a laugh or to make like better in more practical ways. I've not just lived for 41 years with my difficulties. Before I was 18, I earned the rank of Eagle Scout without asking for the official accomodations that you could get back then. Instead, the friends too numerous to name helped me even when it was my first Patrol Leader with whom I've recently reconnected here or the boys (they never aged in my head) who roasted me so well at my Eagle Award dinner. I remember my first Patrol Leader helping me out the most by having me focus on where I could improve. Having never heard a flaw expressed as an opportunity before, I had no problem replying that I needed to be more cheerful. It was a new way of looking at life and no Scouting challenge ever led me to despair though I still see more mistakes and weaknesses than positives.

I learned two major guiding lights in that time of my life. Always resist despair and never find an excuse to hurt someone else. I mean really hurt them not something you can both agree is funny. It all sounds so serious written out here but it came down to little choices. If you had the chance to humiliate someone, do something else and you'll both have more fun. In a basketball game, you can deflect a shot away or you can slam it in the guy's face. Don't slam it in his face unless you're both professionals. You can be competitive, play to win and all that without any humiliation. If you're in a sudden windstorm in the dark and cold, make sure the little guy's tent is secured before working on your own. That might mean a bunch of little guys going to chase down your tent that's flying maybe two feet off the ground and catching it just before it would have flown into the campfire. I wasn't in the tent but they saved me more than a bad weekend, after all.

As I mentioned before, I'm 41 and that doesn't bother me on the face of it. What bothers me is that part of me varying in size from moment to moment holds this desperate desire for my mother or father's approval. When I let that part of me lead the way, I go to a very bad place. I learned despair seeking parental approval and it is a deadly serious despair when it takes hold of me. Despite my struggle to survive, do the right thing, find a path forward for me in life and to keep growing, I learned that I could never  earn the approval from him that I need.

My New York family does what they can and they are the closest I've ever come to having birth parents who didn't want a refund. It's a wonderful feeling but these aren't my formative years anymore. Therefore, every action I take has the equal and opposite reaction of disapproval in absentia.

New Source of Pain

There's a new source of pain in my life and, as usual, I can't blame anyone for it. As you all know, big changes in barometric pressure and long-ish car rides cause me intense pain. No one can control the weather and no one forces me out on long car trips so I can't blame anyone. This latest source of pain is a little less obvious but I'm not vindictive enough to blame anyone for things beyond their control these days. The latest source of intense pain in my life comes from former heroes who have failed to live up to my expectations.

Long time readers may remember "The Big Three" and (only since I've mentioned them) wondered what ever happened to my search for them. The truth is that I found two out of three which is amazing since all I had for the third was a first name and the state in which she was born. Also, I felt that my link of friendship to #3 was the weakest and the most likely to get me hurt. Therefore, I decided to wish dear old Caroline the best from afar and not bother looking anymore. Finding the other two was a seemingly impossible enough task to occupy those spare moments when the pain allowed me to think.

One turned out to be actively hiding from someone but not from me so I asked a third party to ask her to contact me. She did and we exchanged a few amusing emails before I remembered why it was so easy to part ways before. Even when we were kids and life was simpler in some ways, she wasn't the type to do things like return phone calls or take one step out of her way to stay in touch. I enjoyed the challenge way back when and I wasn't terribly surprised when our email exchange stopped before it had a chance to truly renew our friendship. It's okay. I loved her like a sister or a cousin or something before despite knowing this about her.

Finding the first person on that list was a big deal to me. I spent a lot of time pondering how it was that I failed to just run into her while at a restaurant with Melissa somewhere. Well, it turns out that we live in an awfully big world and some of us spread out into it. Melissa moved from New York to Delaware to be with me and that's what matters. Perhaps she had moved as far away as Sussex County, Delaware. Then again, there are 49 other states in this nation and it was possible that she had moved abroad. That just didn't fit into my view of the world and no one should dare not fit into my view of the world! In fact, I found her and she had moved outside Delaware.

Well, I am over the hurt from her but she's an easy example to use while explaining the hurt from others. Why was I hurt by her? Had she done me wrong in some terrible way? Well, no. What happened? When I was 15 years old, I considered her a miracle worker for her way of helping me survive my life. I was ready to cash in my chips (Yet another euphemism!) because I was a terrible person and a failure at everything. Mostly what she did was treat me like a human being when others did not while being almost half as pretty as Melissa whom I didn't know yet. If she could be kind to me and treat me as a friend which is an upgrade from human being, I couldn't be all that bad. She became my hero and she protected me from my mostly unfounded fears of high school.

What changed that? Well, nothing changed it long term. There are far too many days when the pain leaves me with no one to blame and she'll never know any better so I pick her. Otherwise, she grew up just like I did. Her life seems more normal to the outsider (like me) than mine might but I'm sure it has its own difficulties. After all, I'm terribly behind in all my correspondence with people who matter a whole lot to me and I do have a lot of time on my hands. Obviously, regular readers would know that coping with pain takes up all but a little of this time but you can't see that from far away. Knowing what little I know and won't make public, I can believe that she has things to do that are far more pressing than trying to renew a friendship with someone who is a distant memory.

So, what's really bugging me? There were other heroes from the bad old days when I took abuse all the time because I didn't know better. I used to fantasize that these people would catch my parents breaking my spirit and tell me that I deserved better. I fantasized that these people would find me a sanctuary where I would be appreciated for the person I was and not for who I might be if I were cured of all my flaws. Apparently, they didn't see it or so I thought at the time.

One by one, these older adults whom I fantasized about saving me have decided to continue looking the other way. Thankfully, I didn't need them. They are part of my past now along with my parents. The pain isn't gone, of course. It will come back at the most inconvenient times just as the pain of the cruel words, nasty looks and acts of humiliation from my parents do. My real family, aka the New York family, offers me the love and acceptance that I need and I married the most wonderful woman in the world. It took me a long time to get here but I'm feeling like my old high school friend might reply to my thanks about treating me as a friend with one word. That word might be "duh!"

What a Ride!

I knew that I had a trip to New York coming up and I knew I was already sicker than usual. Therefore, I did the one day at a time thing. What must I do to get through Monday? I needed to make those last five dollars we had to our name last. While I don't remember exactly how, we made it. Melissa got paid on Tuesday, I got paid on Wednesday and things were looking great on Wednesday. Melissa was able to buy me more whiskey while I was able to pay the bills for the month.

Nonetheless, I was getting sicker as the week went on and I learned of a big storm that was coming to dump snow on us supposedly. That's when Melissa reminded me of the trip to New York that was coming up. You're joking, right? The painful but beautiful weather was going to hit right along with the painful yet painful long car ride to New York? Melissa had this long list of ideas on how to make the ride up better but the weirdest thing happened. We battened the hatches for this long and terrible storm that would cease all activities of life in the state for as long as three or four days but the storm all but missed us. Eight inches of snow is nothing to sneeze at in Delaware but the storm was ending Saturday night instead of Sunday morning.

Melissa rushed through packing Sunday morning while I huddled in a daze unsure if I'd finally fallen asleep and imagined this whirling dervish in the house packing everything in sight. I had a cup of coffee while trying to be sure that I was awake and then went for my shower.

Okay. I don't know how well you guys understand showers and me. They are not refreshing. They are agonizing experiences where I have to hold my hands over my head. Between the end of my shower and the clean clothes awaiting me, I tried to pass out. In a more merciful world, I'd have found a way to lose consciousness then and there. The pain was miserable and I was done for the day.

Melissa finished up our errands and let me have another quick nap but I wasn't ready for the road. I never wanted to sit in a car again much less that same day. For the first time in my life long memory, I felt car sick. The pain was overwhelming as I moaned and bit back the louder noises. When Melissa insisted on a rest stop, fear of public humiliation was all that kept me upright. I wanted to beg her to spend the night with me in that rest stop so we wouldn't have to return to that car. We had not rigged up the planned coping mechanisms for dealing with pain. There were no premixed and mislabeled cocktails to ease the pain away. Melissa ended up mixing proportions in parking lots that almost made me cough with all my experience.

I did fall down after we made it here and things didn't get much better. Instead of the quiet sleeping house I'd envisioned, everyone was talkative and joyful. At one point, I snapped something about people prolonging my pain and I thought it was going to work for a while but they caught their momentum and started right up again.

All I wanted to do was sleep but I was too wired from hurting so much for so long that I was up just about all night. It started back up early this afternoon until Melissa managed to help me. I think I'm going to save this here and post only after I feel better-ish. Rogue spellcheck at work. Save me!

I'm up before 6 AM and back to work on this entry. The pain was extraordinary again yesterday but I want to straighten something out before I post this. I am here because I want to be here. I'm in a lot of pain but I'm an old hand at this. I could be in almost as much pain sitting at home alone. If I were sitting home alone, I'd be missing my family here. Yes, I'd miss Melissa most of all but I'd be kicking myself for passing up a chance to spend time with the New York family.

By the time the afternoon arrives, I'll be in a lot of pain and lashing out at people almost at random. They will be either out on the town or gathered around their TV like most American families. Since the most comfortable chairs are in that room, I probably will be there as well. My dear 75 year old mother in law has ceded her favorite chair to me so far and that's a huge gesture. I'd be in far worse shape without it. They added a stop on their errands yesterday to get me some of my favorite beer that's local to the area and no one complained (including Melissa) when I threw my favorite expensive import on the list with the stuff that's local to New York. I get treated like...family here.

For those of you who have been reading through all the bumps and bruises I've had concerning my birth family, you might have a clue of how important that is to me. Yes, my parents were generous to the point of extravagance more times than I can count. Credit where credit is due, after all. They saved my ass more times than I would prefer to remember but they never wanted me around except for yard work day. That's even a bad joke because we didn't work together on anything. We each did our own separate assignments and mine was never done right or maybe it was but the point is that it matters a lot less here.

Here in the early morning hours when I can appreciate the finer things, I feel more welcome than I do in my own house. Thank you, everybody.

Sunlight Through the Window

Yesterday was pain doc day so I'm trying to keep the pain at bay using a new/old strategy. I'm trying to ignore the pain by staying very busy though I do need sleep. The phone has been ringing off the hook all day since Melissa left for work. I was downstairs in the recliner trying to sleep with the cordless phone next to me but completely drained. The office phone is my other phone which is up here in the office, of course. It hasn't rung a single time since I started sitting next to it which is Murphy's Law here in the Stapleford household.

As I suggested in the title, there's a bonus to sitting up here. There's sunlight streaming in through the window that's not too bright and not too warm. It's all so very Goldilocks of me but the sunlight is just right. It would be just about perfect if I had a cup of coffee but I've been without for at least a week. I'm not sure if we're in a crisis yet but I'm waiting until Tuesday to ask for more whiskey. So far, I made it through wake up pain without it using medicine and meditation. No, that's right. I didn't sleep so there was no wake up pain but I had something similar but less intense.

I'm sure Joe Pesci could put more into this line than I could but I'm in more pain when I sleep and have to wake up yet I'm also in more pain when I don't sleep at all. The lack of sleep can lead me to more extreme thought patterns involving doom and gloom. Eventually, I find myself with too many cats in my lap and I'm unable to move. Usually, I sleep in naps of an hour or two. Even when I'm on a real sleeping jag, six hours is about my limit. Sleeping longer than that leaves me full of additional aches, pains and difficulty breathing from my post nasal drip. If I can wake up naturally after five or six hours, I have some real energy for a little while especially for literary activities.

I'm going to cut this a little short since the lack of sleep is getting to me. Yeah. My back is starting to hurt and the whiskey must last until Tuesday.

Perpetual State of Astonishment

Keeping you all informed of what you might expect from a chronic pain disorder, post decompression ACM and trying to cope with a life that refuses to stop so we can get out bearings was one of the big goals of this project when I decided to start writing online again. Well, the truth is that this was an overly ambitious goal to say the least. I live in what I'm choosing to call a perpetual state of astonishment where I keep suffering surprises. I began this journey with certain complaints that were always wirh me. I had a headache all the time which managed to be painful all the time even though the pain increased and decreased in intensity.

Other symptoms rotated in and out like linemen that a football coach is trying to keep fresh and ready for the fourth quarter of a tough game. There was the dizziness that didn't seem related to other symptoms as well as dizziness secondary to sudden bursts of pain or to sensory overload. There were seasonal changes that left me trying to look forward to summer with its more intense bursts of pain mixed with relatively long periods of what you might call relief. I was able to go out and do things in summer. With summer's long reach around here causing heatwaves as late as October, the adjustment from summer to winter symptoms is the most difficult.

This brings along the mountain of doubt that I feel each year as winter sinks into my muscles and bones. Is it worse this year or is it possibly better? Am I going to experience one of those much lauded Christmas miracles or could this be the year that my poor habits kill me? This is when I realize that I am just going through another one of those Fall transitions. Lo and behold! I have a headache. It's the same headache I've had since I was 25 but it's a real surprise over and over. Every year, it's a surprise and I fret about it being a surprise. Am I suffering some sort of bizarre early onset form of dementia? No! Of course not.

Once again, I am going through impostor syndrome where I doubt my own value in any currency. I do have a tremendous amount of personal experience that crosses many lines to combine things that do not go together in many lives. For example, Melissa and I have the extensive experience in choosing a restaurant or a table at a restaurant based on how the choice will affect my symptoms. I maintain the fervent hope that you might benefit from my experience preferably before you join me in my scars.

I will continue to muddle on, of course. My beloved wifey and life coach will continue to help me decide what the best option for dealing with each obstacle. Is a particular pain flare something that got through my best defenses of layered medications or did I forget something? Is my duragesic pain patch in place or did it fall off? Did I get distracted while changing the previous patch and only remove the old without putting the new one on? Did I forget one of my oral medications? Usually, it isn't quite so dramatic. Usually, a weather front is on its way and my early warning radar decides to announce the fact long before the news would be useful. Combine that with a lack of sleep and doomsday approaches.

Please bear with me, folks. I'm looking for the reset button.

Stupid Nightmares

It was a version of the same nightmare I've had since the fourth grade yet it was brutal in its own way. I can barely function here at home by myself and I'm by myself at least half the time. I sit very still so that no one will know that I'm home. I don't even wait for an actual knock on the door before I fret these days. In the idiom of Pearl Jam's "Rearviewmirror," the shades are never raised. Neither parent made an appearance in this dream which might be the worst part. They sent a representative whom I met outside my front door. She had a terrible Asian accent that my damaged brain simply will not comprehend very well and she listed a series of demands from them that were horribly impractical for someone in my state.

The threat attached to the demands was the same it has always been in my nightmares about the parents with an extra twist. When I informed this representative that I would not answer the door and would call the cops at the first sign of either parent, she presented me with a document. It was simply an official demand that they leave me the hell alone. The threat of it being "in writing" was the same threat that I try to deal with by writing about this trauma here so often. I would be exposed as someone too easily hurt because everyone knows what wonderful people they are. In short, I'd be wearing a "Scarlet TS" for Terrible Son. I've been dealing with those consequences for the better part of a decade. I got rid of the poisonous relationships that left me wanting to die and, in the process, they took the rest of the family with them.

No matter what the settings may be, the dreams are always the same. I get to face their disapproval and condemnation with the added feeling that they never asked for much where a healthy person is concerned. Therefore, all the mostly healthy members of my family and their adult friends "know" that I could just try harder. After all, the current situation is unacceptable and unreasonable and I couldn't agree more. There's also no one damned thing that I can do about it. I live each day amid a collection of rocks and hard places while making the best of it.

The good news is that I don't have to beat down fantasies of killing myself anymore. As I suspected and, more than anything, hoped, removing myself from a bad situation was the closest I could find to a cure. As miserable as I feel mentally and physically, it's just a shadow of what they did to me on a regular basis. I will hurt, probably yell out in agony, sit absolutely still so that my grey kitty won't choose to abandon me. Instead, this little 10-12 pound cat will try to beat her dinner out of me. I'm only 41 and I'm frail enough to feel it.

Maybe that cup of coffee will help.

Different Types of Pain

I'm not going to bother being superstitious here and avoid mentioning a small break in my tooth pain. It will be back soon enough most likely as soon as I crack or break another tooth. Before my dental disasters, I was able to divide pain into two categories. Summer pain was sharp, concentrated in the back of my head and involved a jump from maybe a six on the pain scale to a ten plus if a storm came within half a continent of me. Thankfully, tea or beer and medicine was enough to help me deal with it and it would pass within a couple of hours of the storm's end. Call it short but sour.

Winter pain was arthritis and this other burning, aching pain that made no sense. Also, I had this lactic acid burn in my arms where I felt like I had flapped them to travel hundreds of miles. It was less intense than summer pain but I just didn't get a break from it. Over time, I went on medication to deal with the arthritis which is only a problem now when my hands are borderline suffering from frostbite if you could get that in the house. My burning ache that I feared was some sort of bone cancer originally turned out to be fibromyalgia and it has responded pretty well to medicine. The lactic acid burn in my arms was what I half jokingly call RAS which means Restless Leg Syndrome in the arms or Restless Arm Syndrome which I prefer. The medicine for that works best if I feel my arms swaddled in nice long sleeve flannel style shirts

As much as it seems otherwise, I don't just sit around complaining about my symptoms. Through trial and error or finding similarities, I find treatments for my symptoms. The teeth are different because they can keep me at a ten plus on the scale for days at a time. I would not be able to wish this on my metaphorical worst enemy and I've made up with all of my worst enemies from school days. I would forgive you for believing that any day without the worst of the tooth pain is heavenly by comparison. After all, that's the way it should be.

Overnight into this morning, my arms felt like someone was giving me electric shocks except not just short bursts of it. The electric pain is constant though it's dulled by this nice shirt that makes me sweat like (insert something funny) and probably smells less than funny. It just goes to show you that there are all sorts of pain, the pain you're in is always the worst pain

Some sleep would probably help me gain more ground.