Your Questions Answered Part 1: Incontinentia Pigmenti & My Schooldays

Recently I have had lots of interesting questions from people wanting to know about me and how I do things. I put a call out to see if anyone else wanted to ask me anything promising to answer all questions put to me in a blog.

I got a surprisingly overwhelming response via email and on social media so I have decided to do them in instalments otherwise the blog will be longer than War and Peace.  I have grouped all similar questions together and may have paraphrased the actual questions.

So get yourself comfortable as I attempt to tell you everything you ever wanted to know about me and some things you didn’t!

What is wrong with you?

I have a condition called Incontinentia Pigmenti or IP. Never heard of it? Don’t worry, neither has anyone else. There are only about 1500 people with it worldwide and except in VERY rare cases only females can have it. One of my favourite things to do when going to hospital or meeting a new doctor for the first time is to casually mention that I have IP. They look at me as if I am speaking Klingon, it’s hilarious!

IP presents differently for each person but for me it is basically weak muscles (apparently I have 20% muscle capacity, hence the wobbling) and skin pigmentation.  Until I was about 12 I looked a lot like a Top Deck chocolate (sadly I haven’t got any photos of this). I was as white as a sheet from the front but at the back, I had solid brown pigmentation from the base of my neck to the top of my heels. Thankfully this has faded now but I still have a large collection of freckles on my face.

Some people with IP are partially or fully blind but my legal blindness (I have about 30% sight) isn’t related to my condition at all. It is as a result of the damage to my optic nerves caused when my shunt (a tube that runs from a ventricle in my brain to my peritoneum) blocked. This trapped the fluid in my head and caused there to be too much pressure squashing the nerves. When the shunt was replaced incorrectly I had a mini stroke (it sounds worse than it was and surprisingly was not painful). The extra damage from the stroke left me with a permanent visual impairment.

I am stone deaf on my left side caused by a problem with my ear (no-one actually knows what it was now) when I was 14. My right ear used to be good enough to do the work of both ears but these nerves were also damaged in the shunt debacle so now I wear a hearing aid.

The fact that I use a walking frame to get around and occasionally a wheelchair is just laziness.

What about school?

I am told that as a child I was very advanced. I started to speak at 6 months old and have never stopped.  As it was originally thought that I wouldn’t be able to communicate at all, I was given IQ tests from a very young age. As a result of these tests my parents were advised to put me into school as early as possible.  So, the year I turned 4 I was enrolled at kindy. This is the norm now but in 1988 it was not very common in Western Australia.

I went to a Jewish kindy (although I am Catholic) with “normal” children. I don’t remember much about this time but I do remember learning a lot about Jewish traditions and one day I even ended up in the local newspaper dressed as Queen Ester.

When I started primary school I was a very confident and precocious child. I had mostly hung out with adults until now and so I spoke like an adult and had a fondness for using un-necessarily big words. I think the other kids (and a few of the teachers) were unsure how to take me. I looked different and I spoke weirdly so I was a bit strange.  Adults may think little kids using big words is cute but other kids do not. I was often picked on for this habit and eventually I gave it up all together. I regret this now.

The rest of primary school went pretty smoothly considering. Of course there were a few school yard squabbles and the occasional friendship tested but overall I generally did what everyone else did (whether I liked it or not) albeit in my own special way.  When we played cricket I played too and used a runner and I almost always got a prime role in the school plays. My favourite was as the ghost in our dramatization of the Australian folk song Waltzing Matilda.

Everything was fairly normal. That was until the final year. For some reason which was never explained to me (although I never did get my pen licence so that may explain it) the school and the education department decided that I needed a laptop to help me. This was useless. Computers were not widely used at this point and so I didn’t know how to use it and neither did the teacher. Also I couldn’t touch type so everything took twice as long as it should have. I would have been better off with a stone and a chisel! The laptop also served to highlight that I was different from the other kids for the very first time.

As the year drew to a close and high school approached there was some concern about what to do with me now. It was suggested I go to a “special” high school for kids with special needs but I was having none of that. I wanted to go where all of my friends were going so that’s were I ended up.

I found high school pretty lonely at first. There was no one like me (not that I expected there to be) but I had started to recognise my limitations and was starting to feel a bit outcast. I had lots of friends but It might have been nice to have someone else in my situation to compare notes with.

I found walking from class to class difficult at times and was often late which I found very embarrassing. I was never reprimanded for this but it was not unheard of for me to sit by myself outside a classroom at recess or lunch just so I would be there on time.

At least I didn’t have to worry about the laptop making me stand out anymore. It had fried itself by the middle of year 8 and I didn’t get a replacement.

The realisation that I was different had made me a tad wary of other students and I found myself getting nervous at the beginning of the school year when new students arrived.  This was because I had encountered my first (and only) real bully. I am not sure why exactly I offended him but evidently I did and I was often treated to taunts and eventually physical violence by him. This stopped one day after my best friend at the time spotted him punch me and marched me (against my will) to tell a teacher which is what I should have done in the first place.

My later high school years were happy ones. I had a close group of friends (some of whom I still see regularly) and as there was more flexibility in the subjects available to you in years 11 and 12 I was able to focus more on what interested me.

We also had a campus to ourselves so I didn’t have to worry about an influx of brand new students each year and because the campus was smaller and I didn’t have to walk as far I could actually spend my breaks with my friends.

I don’t really believe the popular notion that your school years are the best of your life but there is no doubt that they have played a big part in shaping the person I am today. And yes, I am almost fully recovered from my 12 years of Catholic schooling.

Tune in next time for part 2: Assistive technology, accessibility and more…



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