My Brain and Me

If I was not in my wheelchair when I was a very young child, I would sometimes launch myself off whatever I was sitting on and end up in a heap on the ground. I used to think if I concentrated hard enough I might be able to stand up. I guess I didn’t really understand why I couldn’t walk and I did think that I might just be slower than the other kids to pick it up. That was well before I went to primary school. I did understand quite well though what spina bifida meant. I would even explain to anyone who would ask, “What’s wrong with you?” that spina bifida meant I had a break in my spine because it didn’t develop properly before I was born and that my spinal cord was ‘broken’ at the same place and that’s why I couldn’t walk.

Any understanding of hydrocephalus came much later. My best guess is that the brain and its functionality is a much more complex thing to explain to a child, so it was deemed too difficult for me to understand. I also think my parents were learning in real time how hydrocephalus would shape my day to day life. I learned from very young to cover and compensate for the effects of hydrocephalus in ways that probably weren’t very evident or obvious to others at the time.

I don’t think I really understood what it meant to have hydrocephalus until I was in my mid-teens and had access to the internet. That’s when I began to do my own research. Hydrocephalus occurs in the majority of people who have myelomenigocele, which is the most severe form of spina bifida, and is what I was born with. Basically, hydrocephalus is excess cerebrospinal fluid that will not drain from around the brain unless it gets help from a valve attached to a long tube that drains fluid, often into the stomach. This is called a shunt. I had one placed when I was a baby and not only did it save from further damage to cognitive function (I was extremely lucky to have a shunt placed very early) but it also saved my life. Untreated, hydrocephalus can be fatal and, in my case, certainly would have been.

When I was around age 11, a teacher aide started joining my classes at school. I had no idea who this woman was. I knew what a teacher aide was. I’d had them before, but never in class. She was introduced to me but her role did not become clear until later, and then I had to figure it out for myself. She was there to help with anything I might need assistance with. I think it must have been established that I was doing fine in class by myself, so later I started having regular sessions on my own with my teacher aide, which mainly focused on getting me ahead in my core lessons in case I had to spend a lot of time away from school through surgery or other medical interruptions. People with spina bifida and hydrocephalus are often not very good at maths, so that is a subject we concentrated on. We tend to be a lot better at things like reading, creative writing and spelling, so I never had any help with those classes. I do remember I had to do odd things like, when the class was outside for sport or P.E., I stayed inside where my teacher aide taught me how to knit. Not only did I not understand why I was being taught something I really hated and saw no point in, I didn’t even understand that there was something different about my brain that such an activity might benefit.

Hydrocephalus can affect cognitive function in all sorts of fascinating ways. I’ve learnt to view my brain not as deformed or dysfunctional but as different and interesting. That said, there are certain things that are frustrating. It turns out the reason I was being taught, spectacularly unsuccessfully, to knit is because people with hydrocephalus often have trouble with coordination, particularly fine motor skills. This means we can find it difficult to perform more intricate tasks with our hands. My writing is not great because I don’t have the ability to control finer movements in my hands very well. It’s not as bad as it might be, perhaps because so much time was spent trying to improve dexterity and coordination when I was younger. It can be frustrating still when I’m handwriting a letter, which I tend not to do now, and I would have dearly loved to be able to draw a lot better than I can. Still, I think most people have something they would like to be good at but just aren’t and never will be.

Memory and concentration, in particular short term and visual memory, can be affected by hydrocephalus. Organisational skills can also be a challenge to acquire. I can sometimes find it difficult to follow a train of thought in a conversation because I lose track of what has been said. If I concentrate and don’t have any distractions, I don’t think it’s very noticeable. More annoying is the inability to do things like cross busy roads that don’t have a pedestrian crossing without help. I find it difficult to judge how far away cars are and how fast they are travelling, so I often try to wait until the road is clear, which just isn’t going to happen on a busy road.

I have to be taught a few times when I go to someone’s house where the bathroom is because I’m not able to keep a ‘visual map’ of my environment in my head. That was probably one of the most frustrating and embarrassing things about going to university. Not only could I not get around Wellington on my own for a long time without getting lost, I couldn’t even find my lecture and tutorial classes again, having already been to those rooms before.

Disability Support Services had small foldable maps of the university, which were not only helpful in marking access points like lifts and ramps, etc. but they also served as a discreet reminder of how to get to my classes. I was lucky a good friend was enrolled in most of my classes in my first semester, so that cut back on any embarrassment I might’ve felt at getting lost all the time. I do eventually remember how to get around my physical environment. It just takes my brain longer to store that information than it does for most others.

Something I only learned when I went to university is that I have a very good audial memory so lectures were a brilliant way for me to learn and retain information. I never really had to take notes for lectures or tutorials and I didn’t really have to study very much for tests or exams. My organisational memory is terrible, so I would have to be meticulous about writing down when an exam was and where it was and sometimes even make sure I had directions to the exam room. Then I would have to make certain I’d know where to access this information at a later date. It helps if I keep everything like that in one place – thank goodness now for cellphones! If I did forget I had a test or exam, as long as it was at the regular lecture time and place, I could be quite confident I’d still get a good mark even if I hadn’t studied. It never ceases to amaze me how weird my brain is.

I think it can help if people know some of the ways that hydrocephalus affects me so that they might modify their behaviour or at least have some understanding as to what my specific needs might be. It’s difficult to know sometimes, even for me, what is caused by hydrocephalus and what is just a facet of my personality, and I’m reluctant to overstate the impact hydrocephalus has on my life because I don’t want people to treat me differently than they might if they didn’t know I had it. Over many years of learning to adapt, I’ve been able to minimise the impact of hydrocephalus on my day to day life. On the other hand, people don’t know I have hydrocephalus unless I tell them and they won’t understand how certain things are a challenge or that I process information differently. Most often what is needed more than anything else is patience, both from myself and others.


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.