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.