Friday, 3 October 2014

Updates and excuses PART II: THE BLAME GAME

Blame, faith and the peculiar perils of positive thinking...

In general, I try not to blame others or the world for things that go wrong. There seems little point; it doesn't achieve much, other than making you feel even more hard done by. I may have already mentioned before that my mother tells me all the time: Shit happens! That for years she has told me to tattoo it on my forehead so I don't forget! Shit does indeed happen; blame is pointless and doesn't always lead to action. And action is the quickest way out of the shit that is happening (or even away from the shit that's hitting the fans, or flowing in the creek you're stuck on without a paddle!)

In the aftermath of the CRPS spreading not only down to my right leg, but into both legs; I wondered for some time if I was to blame for this happening. Was it my fault for skating and cycling like a madwoman possessed? Was it my failure that Pain was beating me again? Could I have prevented this by taking more care? I should have known better than to go on the ice. I have CRPS; I knew that another injury/trauma can cause a spread. I was stupid to ice-skate in the first place! All this now: my arms, my legs – this is all my fault!

I think that when anyone has an illness or condition that is out of control, one of the first thoughts we have is: Did I bring this on myself? This implies that when shit happens, it must be because someone is actually doing the shitting. However, the shit in this increasingly unpleasant image, doesn't always necessarily follow from anyone doing this... metaphorically.

Perhaps that's the main reason why people are inclined to blame others for different misfortunes. It avoids thinking that perhaps we ourselves - either directly or indirectly - are to blame. There are some who take this further to say that all our sickness and all our misfortunes, are the direct result of the way we think about things. That our negative thinking is the ultimate root of all our ills. By the power of positive thinking, we can all be magically super healthy rich and famous; not to mention beautiful and successful. Since shit seems to be the theme of today, I would personally take this simplistic and downright dangerous view as being utter bullshit!

Yes, how we think about things can have an effect on the outcome. In medicine, patients who have a more positive outlook tend to have better outcomes in treatments and surgeries than patients who have a negative outlook. But this is not always the case. Sometimes having unrealistic 'positive' expectations can have a detrimental effect too. Particularly if things do not go as planned; or this “power of positive thinking” could mean that a patient may not be on the lookout for things that go against what they are aiming for. We humans are very good at deluding ourselves! There are so many different factors at play: the skill of the doctors, the conditions of the treatment; exposure to visitors or even the weather. Are your positive thoughts strong enough to combat a doctor getting their knickers in a knot because someone pinched their muffin from the fridge? Or more seriously, that their day (or the nurses') may not have been all sunshine and roses? What about if someone sneezed on something, or a storm breaks out; it could be any number of random or unrelated things. Maybe your powers are strong enough, but what if they aren't; does that make it automatically your fault if it doesn't work out as planned? Your superpowers of positive thinking simply not being strong enough.

Don't get me wrong; I am a firm believer in having a positive mindset and defeating self-sabotaging habits and thoughts. I also believe in the psychology of the religious or spiritual manner of sending positive vibes (or prayers, if you want to call it that) out into the cosmos. The power of small actions that can change the world. I am open to all that is out there; being a realist doesn't prevent me from acknowledging the psychological and physiological impact that faith can bring. By all means, bring as many positive thoughts, prayers, affirmations, magic or anything you can think of and put in on the table! If you wish to perform, or have a ritual performed on your behalf; all the better. Rituals are important, we all have particular rituals for things that we have an innate need to follow. Humans are ritualistic by nature. Rituals give us comfort, routine and structure. Whether religious, spiritual, animal, vegetable or mineral; beliefs are a personal matter, a connection between each person and their (if applicable) higher power. Just watching the Olympics or any major sporting event, you will see that many of these athletes have their own rituals which helps them perform these amazing feats, in addition to faith in their own abilities to achieve.

However there are others who also do amazing feats that are every bit as incredible, though they may not be held to the same glory nor celebrated in the same way. The accomplishments of people who despite their hardships, manage to function every day. Those of whom could have spent the whole night in so much pain they couldn't sleep. They may have had moments where the pain was so bad, that they felt they were dying - or maybe just wished they were, because it would mean that this terrible pain would end. This Pain may have been with them a long time. This night's experience being one they know all too well; only one in a long string of nights just like this. That person may not even believe in God; only in doing what what is right and what is needed. Having faith in their own abilities and getting the job done. To get the kids off to school in the morning. Or smiling to reassure their loved ones so that they wouldn't worry. Perhaps doing whatever they needed to do in order to go to work, or school. Using every ounce of their strength just to get out of bed. Maybe it's not even possible to do any of that that; with all their strength going into breathing without losing their mind.

How can someone in such terrible pain achieve such feats? Many people fall into a heap whenever they are in pain, and quite rightly so. In most people, pain is a warning system to tell them something is wrong and that they may cause further damage to themselves. It serves to tell them they should be resting, to allow their bodies to heal. But for those people whose Pain serves no purpose and who can never escape its clutches: how do they do this every day? How do they do anything at all? It becomes something that they do because they feel they must, because there is no other option. They may have people relying on them, or they are relying on themselves. Or maybe they do it just to stop themselves from going insane. Ultimately, they can do this because they believe in themselves. Faith can be a completely secular belief system too, and just as effective as a higher power.

This is why I find that simplistic thinking; to say that we are only sick because of our negative thoughts; can make all this so much worse. Does that mean that you simply weren't wishing hard enough and that's why you still have your illness? That would follow that it's your fault that you didn't get better. No? Then it must be God's/the universe's/the devil's fault that you didn't get better. “Oh no, you can't be thinking anything negative! Wait a minute... positive thinking - I am healed, I am healthy...”

We are emotional creatures; it's natural to have some doubt, fear and anger. It's healthy even. You can use these emotions to question, to fuel your strength and find solutions. But if you are blaming anything or denying a huge portion of your emotions by only “thinking positive”, how are you ever going to find a way through it all? While you're busy rolling the dice on the the blame game board and believing your positive thoughts can change what the dice roll, your playing pieces are trapped in this stagnant game. By refusing to acknowledge these darker emotions and by pushing them deep down, you deny yourself the chance to challenge and conquer them. Not only are you deluding yourself by locking it away for fear that you'll “get sick”, but you may be throwing away your only rope to climb out of it.

Blaming anyone or anything doesn't change the situation – it may change the outcome though. Sometimes people get so wrapped up in the blame game that they stop seeking a path to work through and solve the problems at hand. Delays in resolutions or treatments can often change the ultimate outcome. While you're holding that concept of blame so tightly and employing a false dichotomy approach, you may not be acting on the problem. You end up fighting the wrong enemy.

I know. I blamed myself. I felt like I was irresponsible, reckless even. I should have known better. You have no idea how much I have beaten myself with this ever since. For nearly three years.

What happened in April, 2012...

I last posted on this blog at the end of March 2012. I was in such a good place back then. After the last ice-skating day at the ice rink, I felt so sad that the season was over but looked forward to the next. In those two or three weeks after the “last drinks” on the ice, I had cemented my love and the joy I felt skating there. It was a whole new type of freedom. It was that same magic I knew from travelling, from dancing and any number of things I've discovered over the years. I felt a new kind of optimism; come next winter, I would make getting to the ice rink a regular thing. It would be my new sport! It's always exciting, finding a new passion to explore.

It only cost €1 entry on the last skating day at the ice rink. I spent the day getting in as much time with the ice as possible; practising stuff I remember doing before and just taking pleasure in the moment. Trying to improve on my skill-set so that I could remember the sensations and flow. I was determined to master certain tricks on the ice. I planned on reading as much as I could over the summer, so I needed to make sure that I had the general feel of it. Things that you can't understand just from the written word or diagrams: the sensation of frictionless momentum. I fell a couple of times while practising spins but it was nothing major. Dusted myself off, laughed at the ridiculousness and went on skating.

In the couple of weeks following, there wasn't anything noteworthy. I was searching around the city for some support pantyhose though. The hypersensitive patches on my legs were bothering me under my jeans now that I wasn't wearing thermals. It was no big drama though. I knew I had to wait until September for the ice rink to open again, but it was spring so I went about enjoying the improving weather. Cycling around the city, socialising; fighting for the disability dispensation in order to do my written component of my dutch language diploma on a computer. I even planned to go rollerblading around the city and parks. There was something really exciting in finding a sport I enjoyed so much, and I spent a lot of time daydreaming of that feeling I had on the ice. How free it felt, with the wind rushing past me like I was a bird. The first Friday Night Skate was coming, where a bunch of people meet in a park and then skate around the city on the roads at nighttime. I was excited and thought this could be my way of keeping in practice. I hired skates and was looking forward to getting out there.

I cycled to the park in twilight and met up with the girl with whom I had skated on the canals. We locked up our bikes, got out our skates and waited in anticipation. I was so happy at that moment! But it didn't take long to work out something was wrong as we set off. I can skate; I know how to glide on wheels or blades, but it was like I had someone else's legs attached to my body. They weren't doing what my brain was telling them to do; there was a strange disconnect, it was as though someone had played with the wires. I couldn't keep up, let alone actually safely skate. I had to turn around and return to my bike, all the time wondering what could be wrong and feeling deep pangs of disappointment and embarrassment. I mentally calculated how far I rode my bike that day, could that be it? No... Did I do anything out of the ordinary? I had skated fine a couple of weeks earlier. It was a real mystery that I just couldn't work out.

A couple of nights later, I was sitting quietly on the lounge. Probably on the computer or watching TV or something equally boring. All of a sudden I felt like someone was trying to hack my legs off with a chainsaw. I was in so much pain I couldn't speak. My two legs felt like they were literally on fire; they were being crushed and electrocuted all at the same time. I felt my heart racing and my blood pressure soaring. I could barely breathe. I had no idea what was going on, only that something very very serious was up with my whole body. I even questioned going to hospital; getting my man to call an ambulance, or drive me there himself. I took a deep breath and tried to think logically about it. Was I just having a panic attack? I certainly didn't want to be calling an ambulance and finding out later it was just my anxiety playing tricks on me. But panic attacks had never given me agonising pain in my limbs before, only in my chest. Whatever the reason this was going on, I was scared.

The next day was a Monday, thankfully, so I went to my GP and got my heart/blood pressure checked out. They were higher than normal, but not dangerously so. I told my GP how much pain I was in; that my legs were being crushed inside a burning vice. I explained how difficult it was to walk and just moving my legs at all. It was as though I had no connection with them. On examination, there wasn't anything major. Nothing that could indicate why they were so painful. To be honest, I don't remember when it was exactly that I started to put two-and-two together. It didn't come immediately to me, whether from being in denial or just so used to Pain that I forgot. But the moment came where I thought: “wait a minute... this is kinda familiar... you know, I've felt this before... didn't I feel this 10 years ago?”

Oh shit. I do know this, I know exactly what this is. This cannot be happening. Not now, not to me. CRPS has jumped its containment lines and was raging over my legs now. Like a wind change during a bushfire, it's spreading out of control. The sheer surface area this Pain was occupying, was overwhelming. The flames were burning so high and nothing could stop its relentless destruction. It was simply unbearable. It was as though the bones of my legs were being impaled by red-hot metal pokers, while the skin was encased in flames and burning away.

It wasn't the first time I had known this feeling, so that sheer panic and horror I felt with my arm all those years ago, wasn't nearly as intense this time around. What I actually felt was much more terrifying: This is happening because I didn't take enough care on the ice. Why was I so stupid? Trying to do spins or even skating in the first place. This CRPS spread is entirely my fault! My hubris in believing that I could do anything despite having this very condition that would ultimately cut me down. And now I am paying for my own pride; my arrogance in believing that I was stronger that CRPS.

'Pride goeth before destruction, and a haughty spirit before a fall' 
(Proverbs 16:18) 

I'm certainly not one to quote the bible in times of trouble, and I do so here without any religious undertones. This proverb need not speak only in an ecclesiastical context, but rather is the moral ending of a parable. Someone who is so overconfident, that pride blinds and leads them to destruction. It is a common theme in literature, drama, legends and folklore. It is also one that often plays out with a certain schadenfreude in the media. That by being too prideful, too arrogant; the subject won't foresee the imminent dangers that will befall him. That he will act recklessly or rashly, because of a belief that nothing in this world; not even God, will harm him. They are always destined to fail, and often spectacularly; which makes this archetype one that we enjoy watching so much. We simply love to see that demonstration of natural justice; that arrogance leads to getting one's just deserts. 

Here I am; I have a medical condition that happened after a trauma and can spread on its own, or by more trauma. I believed that I was stronger. That it wouldn't happen to me so I lived recklessly; doing things without any thought to the consequences of getting injured again. Believing I was too good for that to happen to me. My hubris. CRPS is nothing, I am stronger. Why did I put myself in such danger when the consequences were so great? These thoughts have tortured me, especially in the darker times during the past couple of years.

However, my story isn't that simple. Sure, I was overconfident – but it doesn't follow that I was really all that reckless. It's not like I had never skated before, or was doing something really dangerous with no regard. I was simply LIVING. Doing something I enjoy; surely I'm allowed to have the same as other people. Otherwise, what am I expected to do? Wrap myself up in cotton wool forever more, just on the chance of something bad happening? Never taking any risks, never daring; always being cautious just in case...?

Life is dangerous. Any number of calamities or accidents can befall us; life is full of perils even if we are young, healthy and strong. The CRPS symptoms had been appearing in my legs before I even set foot on the ice. Though that minor fall may have accelerated the progression, I think it still could have happened from any number of things. I could have fallen on the steps leading up to my flat, or on the tram. I could have fallen off my bicycle or just stumbled in the shower. Even if I had taken all the care in the world, it still probably would have happened in some other way that wouldn't have been anywhere near as fun. Shit happens, and CRPS is a BIG shit in itself!

The thing is, when I had my accident 13 years ago I was at work. It was a day that I had seriously considered calling in a sickie; instead I decided to do the right thing and go to work. My injury happened on a day when I was stressed out and angry. I didn't like my job, and I was packing up stuff because two days of work was going to waste. The workplace treated me badly afterwards, which often happens when someone has a workplace injury. Despite doing all the correct things, the good and proper things; I still ended up with CRPS, and it stayed around no matter what I did.

This time, this new CRPS in my legs, happened while I was feeling on top of the world. I was filled with so much joy and happiness from skating. I felt powerful and had so much pleasure doing what I so dearly loved. It was a shitty thing having the CRPS spread into my legs, but at least I was doing something I enjoyed at the time. I didn't have the same bitterness I felt that first time around. This time I didn't have those frustrations about the way it happened, and where. I wasn't fighting my employer/insurer, the workplace rehabilitation consultant, the lawyer; the whole system as well as my own body and whatever the hell was wrong with it. Back then I was alone and fighting more enemies than I could count, with only a small number of allies who could not take up arms. Fighting in the dark against a condition that was back then, relatively unheard of with even more limited treatment options.

If I had that time to do over again, I still would have gone skating. Maybe I would have refrained from the spins, or gone about it more slowly. But I have no real regrets, nor would I have changed what I did. Essentially, if the CRPS was going to take my legs anyway, then at least I had one final hurrah; a “last drinks” on my legs. If shit was going to happen anyway, at least now I have these beautiful memories to keep with me always. Even knowing I may never be able to do it again, it doesn't feel anywhere near as oppressive as before. If I can't use my legs anymore, at least I can still remember how it felt to fly like a bird with the wind against my face. That slice of sublime; the taste of joy.

Shit happens, but no one is to blame. Not the world, not anyone, not myself. Maybe not even CRPS. It has happened, but life still goes on. Now I just have to figure out what to do with it and learn the lessons it presents me with one day at a time. And I will remain optimistic, though sensibly so. I know my foe well now, I have beaten it many times before and I'm sure I will again!

The next installment is Updates and excuses: PART III The Name Game. The endless search for what it is. CRPS is a diagnosis that needs the exclusion of other causes. Even though it might be easy to keep the same label, there is a great importance in making sure that the label really fits the symptoms. Just because you have one illness, doesn't mean you might not hit the jackpot of multiple illnesses that look the same.

Interesting articles with regards to beliefs and coping strategies:

These are the abstracts only, the full article are pay-per-view unfortunately! I have read the first article in full, but cannot share... welcome to the world of academic publishing! 

Self-efficacy and outcome expectancies: relationship to chronic pain coping strategies and adjustment [Pain - volume 44, issue 3 March 1991 pp 263-269]

Religious coping with chronic pain [Applied Psychophysiology and Biofeedback - volume 24, issue 4 December 1999 pp249-260]

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