Legless

Tomorrow I’m seeing the orthopaedic surgeon who amputated my right leg in October 2014. I saw him once after I was discharged but this is the first time I’ll see him now that I’m properly ‘healed’. 

It took a while to come to terms with my decision to amputate and longer still to accept it once it was done and there was no turning back. I think I was in shock for a considerable time and it took a lot longer than I anticipated to recover, physically and psychologically.

Now that I have recovered for the most part, I have fully integrated my “stump” into my body image, which has always been quite healthy considering I have spina bifida. I can look in the mirror without thinking about what I looked like before. I no longer try and put a sock on a leg that isn’t there and it’s been a long time since I’ve grabbed at thin air, which happened daily for ages. That was pretty upsetting. Actually, I cried like a baby the first time that happened.

To begin with, I didn’t want to go outside or to see people because I was overcome with the idea that people might stare. That was such a foreign feeling. It was so difficult for me to comprehend, even at the time, that I might feel so self conscious. After all, I have always used a wheelchair to get around and people have always stared. 

Eventually, I did start going outside more and people did stare, as they always had. It’s just that now I was noticing. I felt so exposed and raw in those first few months back home. Even that passed. I’ve gone back to not paying so much attention to people’s lingering gazes. 

The whole process has been really a surprise from start to finish. I was amazed at how many different extremely strong pain killers I needed to be on considering I didn’t expect to feel anything much but feel it I did. When the drugs started to wear off and I was due for more, I felt like death. Pain management has come such a long way though compared to 20 years previous, the time of my last major orthopaedic (spinal) surgeries. For that I am eternally grateful. 

So, with all of that behind me, I’ll be discussing with my surgeon the unfortunate fact that I’ve started having problems with the other leg now. I’m not sure that I’m ready yet for round two but at least if I have to make the same decision again I know now what to expect.


Going Down?

Yes. Unavoidably. The point at which I know for sure, all I can think is, “This is going to hurt,” and “How can I best land so I don’t hurt my neck badly?” On reflection, relaxing into the fall might not have been the best decision. It’s difficult to weigh up your options when you know they are all going to culminate quite soon in a hostile meeting with an unfeeling concrete floor.

The few times I’ve had… No. I’ve lost it. I have absolutely no idea what I was going to write. I’ve a feeling it wasn’t to do with falling but that I might’ve related it back in a smartypants way. No tricks. I don’t know how to pull them off right now. Not one clue. If I do have an idea, it goes. I can’t evaluate quickly enough if it was a good one. I get around to a cup of tea eventually. That idea is usually persistent enough that I figure it must be one of my better ones.

The effects of concussion are fascinating. Beyond frustrating but really very interesting. I feel quite normal except that after just over a week I still have a headache and it still hurts where I hit the back of my head. When I’m with people, that’s when I really notice. It’s difficult to sustain a conversation and I find it hard to concentrate on where my thoughts are and how they relate to what’s just been said.

Especially to begin with, my mood was diabolically bad. I was quite suddenly extremely depressed after I fell. I sat in the dark unable to rub two thoughts together. That was a couple of days ago. That’s when I contemplated that maybe the crack I could still hear ringing loudly in my ears might have had a greater effect on my poor brain than the initial pain that made me clutch my head for what seemed like an age before I could move to get off the ground.

I’m meant to be resting my brain. Right now I’m writing this and watching a concert and listening to said concert through earphones and contemplating another cup of tea and thinking about the next podcast I’m going to listen to and the next book I’m going to read. It’s just after 2AM. It’s fair to say sleep has been affected.

I’m eligible for concussion counselling. Nope. No idea. I’ll give it a go. I’m told it’s worthwhile.

A thought keeps nagging at me: Am I still the same person I was just over a week ago? The symptoms of concussion don’t tend to last, though I’ve no idea how long they’ll hang around. For now, I’m left with trying to decipher what is me and what is a symptom. I really do need to stop thinking so much.


A Better Life

The idea that one can be better, do better, live life better, it’s all so subjective. Most of us are just trying to get by. Some of us are reaching, searching for something beyond what we have and who we are.

As far back as I can remember, I imagined that I would one day find it within myself to be the best person I can be and I would have a life I could be proud of. So far, so textbook”self help” narrative.

Unrealised potential is a concept that has been so often attached to me that I couldn’t help but internalise it. My school reports all intimated that I might do so much better if I just applied myself. I was in a top teir class in a streamlined school but I was hardly ever near the top of my classes. I guess it was thought I might be if I worked at it. 

Two things made it unlikely that I would strive for any kind of excellence when I was in school: 

1. I’ve rarely seen life as an olympics. I’ve, for the most part, only been competitive with myself and only then when it really meant something to me. 

2. I was exhausted so much of the time. People, including me, had no idea the energy it took to keep up with my peers and just to live a life as close to ‘normal’ as possible.

It’s taken me many years to get over the disappointment in myself for not reaching my “full potential”. There have definitely been moments where I could have tried a lot harder and applied myself more. I have to let that go. I can’t do anything about that now.

It’s impossible now to imagine my life if I had done things differently. Until recently that bothered me a great deal. Now I look back at younger me and I just want them to relax and give things a go and not worry so much about a future that is never going to happen. 

It can be useful to an extent to plan for a future and to have goals and think about where we want to be, all that jazz, but it can only ever be a hypothetical projection. Unexpected things happen. Life happens; despite our plans, our goals, our desires. If we pin too much hope on our future, we devalue the life we are living right now. Given that all we have is now, it’s important that we give it our full attention.

I’m learning to appreciate the life I have. Not that I didn’t before but I always wanted better. Much better. I had no idea though how much the future was truly scaring me as my projections began to mutate into parodies of themselves, or worse, to fade away only to be replaced with frightening dystopias. 

The unrealised potential that had been alluded to so constantly throughout my life was crushing me and, ironically, rendering me completely useless in the face of a formless future. Now, as I focus more on today, on this moment, I can look forward to tomorrow, whatever that is.


The Future is Now

Plans just don’t work for me. I’m done with the future. I’ve stumbled upon a way to live my life that isn’t based on what I now realise is a crash and burn philosophy that was booby trapped at every turn. Whenever something didn’t work in my life, I would drop it completely. Often out of necessity because it just wasn’t working and it was affecting my health, but sometimes out of frustration and an inability to figure out how to make it work. If one follows this pattern enough times, one is left with a skeleton of a life. That’s where I feel I’m at now. I’m starting from scratch…again. That doesn’t feel as bad as it might seem, though I’ve done it enough now that I’d quite like to know what it feels like to carry on rather than start again.

The first three months of 2016 have been some of the hardest of my life, at least from a psychological and emotional perspective. I’m looking at myself and my life with honesty, perhaps for the first time. I’ve felt very sorry for myself over the years, I’ve told myself I need to pull myself together, I’ve promised myself I would do better, I’ve tried being positive about where I’m at, I’ve worked hard at trying new things and pushing myself to be different. Something was missing. I had never really looked at why I was so dissatisfied or why, with the greatest will in the world, I just couldn’t get to where I wanted to go in life.

I’ve made a few major changes since I started really looking at where I’m at. The first thing I did was stop drinking completely. I haven’t been a big drinker for years. At least not consistently. I didn’t think I had a problem. Then I looked back at the times I had more than one or two drinks, and I realised those were times that never ended well. More than that, the consistent theme of those evenings was that I did not care what happened to me. Sometimes I scared myself because I wanted something really terrible to happen. I wanted to feel bad and to be hurt. I finally have that out of my system. I’m not interested in discovering a rock bottom that is worse than what I’ve already been through. I’m done and having made that decision, it seems so much easier to me to never have another drink than to try and work out how many I can have before I reach a new low.

When I realised that alcohol was not doing me any favours, I started to look at other areas of my life and I was shocked at just what a self destructive person I am. It turns out I don’t know myself at all. I booked in to see my doctor. I needed help. I didn’t know completely what was going on but I had a feeling it had a lot to do with my past and what my body has been subjected to over decades to keep me alive and functioning. I had tried to get help in the past but I think it’s fair to say, I hadn’t tried very hard. I didn’t want to look back, to the extent that I struggle to remember important things in my past now. It takes some real effort to recall both good and bad happenings. I was all about the future; a future that was looking increasingly bleak as I felt my life closing in on me.

Up until my mid 20s, my future was something I looked forward to unreservedly. I was entirely optimistic. I never had any doubt that I would do well and while my goals and aspirations did change over the years, I was always sure that whatever I ended up doing, I would be successful. I look back on this arrogance now with admiration. Younger me had a drive that I have all but lost. I had a confidence in myself that I now find amazing and somewhat bewildering. It was exhausting though, being younger me. I had no patience with myself if things weren’t happening. My brain was so full of the future that I began to pull away from now.

I’m getting help in the form of a very patient and smart psychologist and I’m working towards a life where I might look at the day ahead with its wonderful potential and feel optimistic about the hours I have at my disposal. The future as a construct has ceased to be a useful concept to me. I am incapable of imagining a realistic and reasonable future for myself and that is one of the many ways I set myself up to fail. That makes me very unhappy. As for my past, I am beginning to look at it through kinder eyes.

I don’t know when or if I will be ‘better’. I do know that whoever I am and whatever I am to be is rooted in today. That’ll do, for now.

 


The Revenent 

Relentlessly grim. Needed more bears. 


David Bowie

I wasn’t going to write about David Bowie or his recent death for a couple of reasons. I was too distraught for a while to write anything other than “WHY?!” That’s the main reason.

Another reason is I didn’t feel like contributing to the post mortem. There were two types of writing that came out in the days after Bowie’s death: think pieces and feel pieces. I tried reading some think pieces but they sounded like rung bells in my head.

Many of the nostalgic ‘feel pieces’ I’ve read are wonderful. They all contain kernels of truth for me that reflect my experience and how I’m feeling. I am comforted by the idea that I was not being silly or overemotional when I couldn’t stop feeling about David Bowie and his death. Or at least if I was, I was in good company.

Through David Bowie and others like him, those who choose to – I was going to say ‘live their lives through’ but I don’t mean that – dedicate their careers to the arts, I have learned that where there appears to be no meaning or purpose, those things can be created. A half formed quote about an unexamined life is milling about in my poor brain.

I always assumed David Bowie was immortal. Only now he has gone have I recognised I was not alone in that assumption. He seemed so much healthier and happier as the years went by. The Ziggy years, the frightening Thin White Duke period; you look at him and he is a character but you see that the man is fragile, thin and pale, sometimes barely there, and you wonder how he made it out. I guess I figured if he could get through that, he might actually live forever.

Many of his later interviews, still more than 10 years ago, were filled with happiness and humour – he was so funny – and he spoke of how much he loved aspects of his life, particularly the parts we were not privy to. That makes me happy. His private life was and is none of my business but I like the idea that one can grow into one’s self and I’m glad for him that he found peace or whatever it was that gave him that easy smile.

Now, we are left with his music and his art and his films. There is an illusion of immortality there, too. Anyone who is blessed with the gift of creativity, so long as they do create, can live a little longer. It is some consolation. Not much of one in the end for the individual, I’m sure.

For the people who go on artistic journeys, the art is always there to go back to again and again. Even if, eventually, it is necessarily bookended.


January 1, 2016

I liked 2015. It was a nice, balanced number. I feel indifferent about 2016. It doesn’t look like a particularly auspicious number. Happily, I gave up on any kind of superstitious or magical thinking a long time ago. Looking at it though, I don’t like the number 6. I’ll just have to deal with that as best I can.

2015 was not a good year for me. To be frank, it was really rubbish. I’m struggling to come to grips with the idea that nothing I wanted to achieve at the beginning of last year came to fruition. Failure is tough. It hasn’t been good for my self esteem or sense of self.  2015 was a year of trying new things and those new things just not working out for me at all.

 

Stuff I Tried That I Was Terrible At:

  • Formal social groups
  • Project Management
  • Co-hosting a radio show
  • Volunteering
  • Compassion toward idiots
  • Putting up with idiocy
  • Not judging people as idiots
  • Leaving the house
  • Being more assertive

 

However, there are a couple of things that saved 2015 from being utterly bereft of hope.

 

Stuff I Tried That Worked Out:

  • Making new friends
  • Listening more
  • Moments of spontaneity
  • Being more assertive

 

That ‘being more assertive’ appears on both lists is no mistake. It’s a work in progress. I’m getting used to speaking up, speaking my mind and making sure I get what I need. I’m also reacting a lot more, especially when people say or do inappropriate or offensive things that relate to me having disabilities. It’s trickier than it might seem and I’m trying to figure out how to be assertive without feeling like an arsehole.

‘Stuff I Tried That I Was Terrible At’ taught me a great deal about myself. Mainly that I am very good at sabotaging my own success and I have a weird perversion that makes me gravitate towards things that do not play to my strengths. Also, I need to be pickier about what I involve myself in long term because even the smallest of projects can derail other more worthwhile, satisfying and meaningful plans.

Perhaps the biggest lesson I can take away from last year, if I must, is that when people begin to pull back on what they require from me, or I feel like nobody needs me anymore, and people’s expectations of what I am capable of diminish, I can’t just roll with it.

It can be soul destroying knowing that people don’t expect as much from you as they once did, for whatever reason. I have decided to expect more from myself to combat the feeling. I have to really think about what it is I am capable of and go for it. I have to believe in myself and my own capabilities and decide to do better, not because it might make others think better of me but because it will absolutely make me feel better about myself.

‘Stuff I Tried That Worked Out’ might be a shorter list but I’m pleased with it. In a year that was, on the whole, one of my worst, there have been little rays of light that make me hopeful for 2016. They are all things I can work on and that make me look back and realise 2015 was not a total disaster.

It wasn’t a good year but it is entirely possible I’m a better person for it. That will have to do.


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