Saturday, 27 September 2014

Updates and excuses PART I: THE SHAME GAME

And yes... the shame of making this post some 2 1/2 years after the last, my biggest shame of all!!!

It's strange how fast time passes, especially after you hit 25! Pain and I have been together for 13 years now, though it feels like yesterday I was celebrating 10 years. A theme of this piece is relationships that come and go. Strangely, of all my relationships and friendships over the years, I have probably had a relationship with Pain longer than I have known many of the people I know now - Pain and I seem married for life now. Brings a whole new meaning to being shackled to the ball and chain...

 These past few years have been some of the biggest challenges I've faced so far. Perhaps not as difficult as the early years of CRPS, when I didn't really know anything, nor had any experience to draw upon. What I had hoped simply never would happen, has now happened and has become the biggest challenge to my own sense of self. Losing the battle with CRPS. It has spread to my legs now. And I have felt like a huge failure at times, for letting it take over so much of my body!

As someone who values independence in the same way as I value necessities such as water and food; I've needed to adjust what I define as “independence” in order to continue being, well... me. In the early years of having it in my arms, no matter how horrible it was, I still could run away. Maybe not from the pain, but in the physical sense of moving my legs in order to get me somewhere away from wherever I was standing. Now I have CRPS in all four limbs; though it presents more severely in the right side, I seem to have run out of spares!

It has become the biggest challenge I have ever needed to overcome. Not having freedom of movement; needing to be humble and asking for help. Adapting my home so that I can freely use it; adapting the outside world wasn't quite as simple. I needed time to adjust to this change in circumstances, and learn to be more flexible. Active people rarely do well in confinement. I could never allow myself to feel imprisoned, even though in many ways I was. It's a good thing I'm on better terms with my own head otherwise it could have been a living hell! If you're going to be locked up with just you and your thoughts, you had better make sure that it's a good place to be!

But these years have been a challenge that I have faced with my head held high. There has been some incredibly rough times, many down days, but in general it's proven to me that the actual depression I had some years ago, is well a thing of the past. If I can cope with all this, and still remain somewhat upbeat; well, it proves that I'm in the right frame of mind! It's a good thing to already be so chummy with CRPS and pain. Through the never ending rounds in the boxing ring, I am still; figuratively if not literally, standing! I am stronger still!

Oh dear, so much time... where to begin? None of it really makes any sense unless I go back in time to that fine year of 2012! Oh the nostalgia! Why did I avoid this blog that I so lovingly started and was so proud to say was mine? This story begins before the major dramas happened, so why did I go “off the grid” in the first place?

Back in the beginning of 2012, I had two legs that were still functioning in a nice bipedal manner, getting me to and from where I wanted to go. Trams and buses kept me in the loop of free metro papers and overheard gossip, while I enjoyed watching the reality TV show of the very people that are the eccentric characters of this wonderful city. It's always interesting to watch people who don't know they're being observed; so wrapped up in their own little worlds that are as big as their phone HD screens while missing out on the very real high definition world passing by outside (yes, I see you when you pick your nose on the tram, even though you think your headphones make you invisible! I happen to like watching the world and having a giggle at the little things, thank you! Don't worry, I wasn't reading your screen!). I was enjoying doing a job I loved, and finally felt I had somehow found my place in the world. I was enjoying normality.

Despite all this the CRPS was nonetheless quietly creeping its way outside the confines of my arms. Patches of allodynia were erupting in different places over my thigh and hip, or on my calf. I didn't think much of it, though I was possibly in denial. Like anyone, I believed that if I simply ignored something, it wasn't happening. You know those people, who close their eyes and simply refuse to see things! I was too busy to see it anyway, with working in a dental surgery and enjoying life after finishing language school. Ice skating, bike riding, socialising... life was good, which made it a lot easier to ignore niggling weird patches. If I didn't acknowledge it, it wasn't happening!

I lost a lot of confidence around that time, just before it all happened. It had a lot to do with someone who I valued as a friend, a close friend. She dumped me. No one likes being dumped; people write songs about it, poetry gets written, music gets played... Being dumped by a friend isn't quite like being dumped by a boy/girlfriend, but it's still plain shitty. When you are dumped because you are sick and or disabled; perceived as a burden; or that they see you as somehow suffering or tortured well... not only did it make me feel like I'd been punched in the guts, but I felt those awful familiar pangs of shame, embarrassment, and humiliation. Feelings I hadn't felt in a long time. Not only was it personal, but it was something that I have absolutely no control over having; not from the way I had acted or something I had said that hurt or offended her. No matter how hard you work to be strong, how many battles you win; someone's mean words can turn all of those achievements into something that just makes you want to crawl under your bed and never come out.

I still remember her words and the Shame. The shame I felt for having an illness is one that I hadn't felt in a long time; but had a familiar ring to it, comforting even. Not being whole; my disability being a deep personal flaw for which I could never compensate. Shame, humiliation, embarrassment. I had been so happy in the few years prior that those feelings had been distant. In my joy of finding a new career path, in doing my language diploma and building friendships like I had with her; I had let go of the main thing that had kept my condition a deep, dark secret. Nothing keeps a secret locked away better than shame!

I analysed everything I have ever said or done, trying to see if I was ever given that impression; or if I talked about it too much or not enough. Guilt, the sister of shame. "It must be something I am / have/(n't) done / said" to have made her say something like that. I went over it again and again; but I simply couldn't find where it came from in my words or actions. I rarely complain about it; even to my man or family - the very people I am unguarded with! I don't bitch and moan; I rarely even talk about it at all, aside from general things and off days. When I meet up with friends; I have more important things to chat about than something that doesn't change.  There is more to life than something that is like any other chronic condition. I manage it in a similar way to diabetes or asthma (medicate and monitor). It has periods where it isn't under control; but I was much more interested in discussing books or something I had read or seen. I prefer to discuss current affairs; what we'd read online or other viewpoints and observations. There were much more interesting topics to talk about than my strange neurological connections. It has never defined who I was; it was just a travel partner I was stuck with, or an embarrassing tattoo!

I simply couldn't understand it. Maybe she just wanted an excuse to stop being friends. Friends fall away over the years, interests change and there are all sorts of reasons that don't need to be so damn personal. But this, this was a low and below-the-belt blow. Surely she could have found a better way of going about it.

Time heals, everything happens for a reason. I have real friends, friends who have been there for me even at the worst times. Friends who have supported me, cheered me up and celebrated with me. So all of the wins I have, are also their wins. Friends who know what life really is about. When I look back at it now, I just feel sorry for her. I never had the impression that she was truly happy with herself, or her life. I don't think she had really experienced much of what I would call real life. What it truly means to love, to lose, to dream and experience life from the front seat. To embrace the rich variety of flavours and smells that make up the very world we live in. I pity her not for lack of experience or exposure; but for being unwilling to step outside her confines, while looking down on those who do. I don't think she had ever known anyone who has a disability, or illness, apart from me. It makes me wonder how diverse her social circle really was! Even among our sad and tragic experiences, there are always touching and joyful moments to be found. It is from the joys that we have felt before that makes it so painful when something ends; and unlike CRPS, that type of pain fades. Or at least becomes less intense over time. Loving and losing people; and understanding when you have felt these things. Isn't that what we are all here for? Isn't that what life is about? Savour the tastes of today, for tomorrow may never come?

Her world always seemed much smaller than mine; greyer and safer. Sometimes it's the people who have the most freedoms, who have the most trouble appreciating actually having them in the first place. That's ok, if it is what you want. But my world is vibrant and colourful. I live with pain, but I live a life worth living; and I do not – and never will – suffer in any way, shape or form. I live for today; love like there's no tomorrow; relish what I have already experienced; and actively create my own destiny. I have lived with significant losses; not only in my own body, but of people that I really treasured and loved. I have seen what real suffering is. I have experienced the darker side of life, but I choose to live with light and laughter. What I live with: CRPS, disability, constant pain... it is by far NOT the worst thing that can happen. There are much worse things than physical pain and disability! It's sad that some people never realise this simple fact of life.

Ah well, you know what? It wasn't fun, but it certainly isn't high on my list of the shittiest things to have ever happened to me. More than the pain of losing someone I thought was a friend; what bothered me most was that deep humiliation and shame she had me feeling. Why did I allow someone to make me feel that way? How I wish I had a normal life sometimes; that I was 'normal' and boring. I wish so badly to not have to deal with this chronic condition that only gets worse over time. I felt so embarrassed to have an illness over which I have no control. I was so desperately ashamed to be disabled. That is by far more damaging; than just being dumped by someone who evidently, was a toxic friend. Even back then with writing this blog, I felt these things so intensely that I was too embarrassed. I was too ashamed to be so open; and that my personal experience was something scandalous; to be hidden away. My biggest fear was that she was somehow right. I was second-guessing everything. If I was so wrong about someone I thought was a friend, perhaps I was wrong about everything else...

It was a terrible feeling; much worse than what my body would throw at me only a short time later. Fighting my body and fighting the pain was much easier – I knew it well. I was; and still am stronger! But shame... Shame is such an awful and debilitating feeling. I felt powerless to it. All those years of work to become comfortable and confident in myself; it was shot down in a day. I felt like I was standing naked in front the whole world; the shame and self-loathing I felt were all consuming. And to think that I let someone who wasn't even worth it in the long run, get the better of me in this way. Now I just feel really stupid!

What I've realised since is that we were perhaps mirroring each other, and not liking what we were seeing. Maybe she was seeing her own weaknesses; her lack of strength in character; her fears and even her bigotry. Perhaps some jealousy too, in not being as “distinct” as others she saw around her. This is something I remember her remarking on earlier about someone else. I never noticed these things in her at the time, but looking back it's all so clear now.

In her, I saw reflected my own feelings of shame of being 'incomplete' and somehow broken; and my sense of failure for not getting better (even though I tried everything - and I mean EVERYTHING!). More uncomfortable to admit: a fear that I somehow deserved this fate for things I may have done in the past, or people I may have hurt. I had the same undercurrent of inadequacy too.

In hindsight, she had already stopped being a good friend for some time before all this. I admired her intellect and I missed our discussions; but she was also negative; judgmental; weak and quite frankly, a little bigotted. Life is too short to waste time on people who aren't of the same calibre. When I think of all the wonders and depths that I have lived since then, it's probably a blessing anyway. With someone who didn't possess the fortitude and bravery I needed; in order to become so too. A sparkly mirror! I don't feel bitter about it; actually I don't feel anything at all. It was disappointing; but I haven't really lost all that much anyway. There have been other friends over the years who I've felt much more cut up about losing. I hope she finds some contentment in whatever makes her happy; in her own normal world. But my life is much brighter; all the better without someone who would make me feel ashamed not only for who I am, but for having an illness over which I have absolutely no control.

I have more than enough friends now; those of whom never saw me as anything less than whole. I even gained some new ones, in some surprising circles of life. All these people make me smile when I think of them and thank the universe for the chance to know them. Because these very people are worth much more than anything else. I feel fortunate again, lucky and happy; with people who value me as highly as I value them. Who mirror joy, strength and courage instead of bitterness, judgements and shame. If I had a choice between having these wonderful people AND the CRPS; / or / being 'normal', but without such friends... well, 'normal' is overrated anyway!

Because there are much worse things than physical pain and disability! To live a full life with pain, or to just exist in a beige world without pain, I will always – every single time – choose life!

The story goes on in the Updates and excuses part II: The Blame Game. It won't be in another 2 and a half years time, believe me ;-)

No comments:

Post a Comment