I was born on the 16th of september in 1991. My mom often told me this story of how I entered the world as it is quite unusual. Mom, a teacher in an elementary school, was in the process of looking over some exams her class had done and dad was outside attending to the horses we had at that time. Then my mom felt something strange and immediately called my dad wich then called the ambulance.At this time we lived in a little town, about 30 minutes outside of the capital. I don’t know if it was because we lived outside the city or what, but the ambulance that came to get my mom didn’t find our house so my parents had to wait for way too long. Both me and my mom were in a critical condition. Finally the ambulance came and drove to town with us. However, after driving for about 10 minutes, still long way away from the hospital, the ambulance broke down. So now, the paramedics had to call for another one all the way from downtown. More time wasted and we still in danger. The second ambulance finally came and managed to get to the hospital. The doctor was really fiourious with the paramedics about the delay, asking them angrily why they had taken so long? Then they took mom in and preformed an emergency C- section.
I was very small, only 45 cm long. For the first few months of my life I appeared to be a fairly healthy baby, but at 6 months old I started having severe seizures. The doctors admitted me several times to the hospital to investigate why this was happening. In the end they found out that I had severe brain damage, most likely due to lack of oxygen at birth. This particular kind of damage to the brain is called White matter damage - or periventicular leukomalacia (PVL). It means that the white matter that protects the nerves in my brain is missing in some parts, and damaged in others, so the nerves aren’t protected as they should be. Nowadays it’s said that this kind of brain damage is very often a cause of CVI. This also causes my optic nerves to be damaged which results in me having an ocular problem ( optic atrophy ) along with CVI. Optic atrophy means that the nerves that go from my brain to my eyes are severely enough damaged to have a negative impact on my vision. Before my CVI diagnosis I was registered with 80% vision on my better eye and 30% vision on the worse eye due to Optic Athrophy.
I mostly had an ideal lovely childhood. We lived on a small farm just outside of the city. Me, my parents and my big brother, along with our dogs and a couple of horses which my dad attended to with help from us kids.Dad worked as chief of our fire department as well as a builder. He also was in our town’s rescue team. My mom was a teacher, and later on a student assistant in the elementary school I was in. She later on got a job as an assistant principal, when we moved to the city when I started college.
Due to my brain damage I couldn’t run and play like the other kids at school as well as I always bumped into everyone and was constantly falling. I also needed a special education teacher in maths. I had physical and occupational therapy a couple times a week, most of my life.
Later, when I was nine, I was diagnosed with dyscalculia (a condition which is somewhat similar to dyslexia but with numbers. - Dys = bad, difficulty, calculia= calculate, maths). When my CVI was finally diagnosed I learned that dyscalculia is extremely common in people with CVI.
My parents of course monitored me closely after all this, and followed me through all the tests, examinations and therapy sessions throughout my life.I think I was about five years old when I got diagnosed on the autism spectrum. I had before, as an infant, been diagnosed with Cerebral Palsy ( I have trouble using the left side of my body - particularly my left hand and leg) and epilepsy.
When I first started elementary school, my mom notified my teachers about my disabilities. I myself can’t remember much about this first year. Although I've been told that teachers wanted to do their best to help.
I think I didn’t understand my disabilities fully until I got the CVI diagnosis, and definately not during elementary school years. When I asked about it, it was usually because I realized I couldn’t run as fast as the other kids, or if I had trouble doing something they were doing - like sports class, expecially when there was a ball involved. I now know that the problem was that I couldn't see the ball well enough to handle it. In those early years my parents usually answered by saying - ,, your feet aren’t working as well as the other kids’s are”. Which is also true - due to the CP that I have.
As time went by I always felt worse at school.I endured severe bullying both from the fellow schoolmates as well as some of the teachers. At first it was mostly mental, calling me names, excluding me from games or gatherings, saying negative things. Then later when I got to the teen years it turned both mental and physical. I was punched, kicked, pushed, and hurt, along with steadily worse name callings. I used to hide, during break time to avoid the kids and their bullying. I would go as far away from them as possible, and then enter school again when everybody was already inside. I remember developing my own ways to cope with the visual problems that I didn’t know I had - for example when I got overly tired doing a task - I usually lowered my head down to the table to block out anything visual for a while. This was viewed as ,, laziness” and being uncooperative by the teachers.
I was very verbal as a child and did quite well in those subjects ( icelandic, english, danish or social studies f.x.) I was a good speller and had the grammar rules pretty much on point. For this reason, the teachers couldn’t understand that I had immense trouble with maths and science project. I got to hear comments like ,, You’re stupid”, You’re not trying hard enough”... ,, You can’t learn” … etc. The impact of CVI on my math studies was huge. For example I could never use graph paper appropriately to set up math problems. This is due to visual clutter ( too many things to look at at the same time.) I also had dyscalculia, as mentioned here earlier. This lead to me having a special education teacher, which happens to also be a good friend of my moms. She was one of the few that actually understood most of my troubles, so I was really lucky there.
I have always been very clumsy, had almost no fine motor skills, while using my hands or legs.
A day rarely went by when I didn’t trip and fall, bump into something or someone and I got hurt. I even sometimes fell without any visible reason, for example when standing still. This clumsiness was always blamed on my CP diagnosis and balance issues due to that. I always felt uneasy in sports, art class, as well as sewing and building ( these are things elementary school kids in iceland learn as well). Due to my clumsiness some of the teachers told me and my mom that I wasn’t doing what I should do, and that I wasn’t trying enough. These comments came almost daily along with more subtle cues of bullying like laughing at me when I asked for help.
The kids also bullied me every day, excluding me from their games, call me names, ignore me as well as saying some really bad things about me. When I got to the pre teen/teenage years it got more physical, like kicking, hitting, punching me , throwing or spitting in my face.
My mother always fought like a lion for me and along with me. Unfortunately, some of the teachers frequently reminded her of how I ,,wasn’t doing what I should” at school and told her that I needed to try more, etc. etc. Mom of course tried to fight this but we didn’t see any positive improvement. My parents knew I had some visual problems due to optic nerve damage - but - people never accepted me being like this due to being visually impaired or legally blind. However there were clues throughout my life, which we later learned are typical for being visually impaired. For example walking around with my head down ( lower visual field impairment), staring at a particular thing for extended amounts of time ( a big bully trigger here)... and avoiding noise as much as I could during break time. Once I even remember my mother telling me a story about five year old me, coming up to her and asking - ,,Mommy, where is my room, it's gone"? I had and still to this day have extremely hard time navigating the world. It has gotten a little better over the years, but there I couldn't even find my own bedroom as a five year old.
For the first years I was lucky because my mom worked at the school and I could alert her quickly if something happened, which it did several times a day. A couple of other teachers tried to help, for example my special education teacher, which was a good friend of my mom’s, but mostly the school turned a blind eye to everything. Despite this, I graduated from elementary school in 2007. However, still by that point we didn't have an idea why I had some of these subtle problems. Why was I always tripping and falling?
Why was I always walking around with my head down?
Why was I clumsy?
Why was I afraid of noise?
Why did I always have trouble finding things, even when they were right infront of me?
What was the reason for me being deathly afraid in sport class, sewing class and building class?
Why did I always bump into everyone?
Why didn't I ever know where to go or even where I was?
The answer to all those questions came finally when I was 26 years old. One day my mom came home from work and told me she had met a child at her school who was diagnosed with CVI. She said that she had gone to a meeting to learn how to help the kid, and when she was told how CVI works, she had had this aha - moment. So we started googling and it all ticked in every single box. We made an appointment with my opthamologist, where we asked him about all this and he suddenly said, as casually as if he were talking about the weather, : Yup, she got CVI. I've known it since you were a baby". We looked at him, pretty pissed off, so I asked him - why haven't you told us anything? His reply was, well, I didn't want to stress you out too much! He then proceeded to saying- I don't believe CVI is that much of a problem anyway".
So, it wasn't until my mom basically had to ,,force" him to refer me to the blind institute, that I got an appointment there and was put through all kinds of tests and trials, including a visual field test. I also started O&M lessons ( learning how to use f.x. the white cane). That's where I again meet my opthalmologist. I greeted him and he blurted out - why are you spending your time on this? You don't need a cane, you see too well". That's when all his negative comments got to me and I had to walk away from him. I felt so unvalued and unappreciated. The O&M teacher then told him to watch his language!. Shortly after this I take a visual field test. When it's results came, I was formally diagnosed with CVI. It showed that instead of 80% vision and 30% vision - I had about 4-5% vision on both eyes. So, I was legally blind. Knowing this, came as a punch in the face, but also some sort of a relief because now I knew I'm NOT stupid or lazy, I AM doing my best, I AM worth it. To this day I still have to remind myself this every single day. The feel of stupidity, laziness, unworthy and weakness is always there, so I actively have to get it out every day.
Sadly, in the midst of all this, my mom got her wings, a few days after diagnosis. She knew, all the time even though she didn't get to live to see her hunch appreciated... but she's always with me, and my goal in life is to make my parents and family proud <3
I hope this blog isn't all over the place and I thank you for reading!
Until next time
Dagbjört