‘My Journey’ Part 1: The Diagnosis and Early Years

This is the first post in a six-part series I plan on releasing about ‘my journey’ from the diagnosis of my disease when I was a baby up until where I am now with my disability. In-between each ‘journey’ post I’ll release one of my usual ones before continuing with the series. This is ‘my journey’, ‘my story’, my life. I hope you enjoy:

Photo of me when I was younger

‘My journey’ began when I started learning how to walk as a baby. My parents noticed that I had a peculiar way of walking (my legs kicked out violently as I stepped forward and my back was arched with my bum sticking out at the back) but, of course, when babies are just starting to walk they don’t always get it right straight away. My parents took me to see a doctor in England to see whether or not it was something to be worried about but they kept getting referred to other people and ended up giving up. It must not have seemed like that big of an issue at the time.

After a while, my whole family packed up and shipped out of England to start a new life in the Netherlands. When I was around two and a half, my mother hosted a coffee morning and one of the mothers there pointed out the funny way that I walked again. After that, my mother decided to take action once more to investigate why my walking was off.

She took me to a Dutch general practitioner (Huisarts/GP) and right away they sent me up to the hospital to get looked at. The practitioner told my mother that she should bring her husband with her when we went to the hospital. That was the moment my mother became scared, scared that my weird way of walking may be much more serious than she had anticipated, scared that the reason that her husband should come too was because they were about to hear some distressing, life-changing news.

Image of a child getting tested at a hospital by Los Muertos Crew via Pexels.com

At the hospital, my mother, my father and I were all tested. They attached wires to different parts of my legs and sent electric shocks through my body to see how my nerves reacted along with numerous other tests including the drawing of blood. Apparently, the electric shock test was so painful that afterwards I didn’t want to go near anyone wearing a white coat because it made me scared (as any other two-year-old would be).

Obviously, the moment that my family was told that I was disabled and would have to use a wheelchair permanently in the future was an emotional one, a moment which my family members will always remember. I’m getting emotional now just thinking about what it must have been like. After three able-bodied daughters, it was the furthest thing from my parents’ minds; but life moves on and you learn to adjust. In my eyes, my parents never lost a beat – I was brought up like all my other sisters and had fun and fought with them like any other squabbling siblings. From my perspective, my childhood wasn’t different from any other:

Photo of a young girl in a wheelchair and her friend by Meruyert Gonullu via Pexels.com

My first social ‘disability’ memory is me making a girl upset by telling her that I was special and she wasn’t because I was disabled. Obviously, being disabled wasn’t a very big issue for me at the time since I used to use it to insult others! From my early childhood, I have no memory of having trouble with friends because of my disability, of missing out, or anything like that. Among my classmates, I was a natural leader and would often make up the games that my friends and I would play.

One of my eldest best friends, who I’ve known for as long as I can remember, said that her first memory of me was seeing me run across the playground with two other girls, our hands stretched out because we were pretending to be aeroplanes. My fingers must have been curled and my walking must have been off, but I was still zooming along with them without a care in the world. My future friend looked at us from across the other side of the playground thinking: “Who’s that girl?” 

Picture of a dirty nappy by ReadyElements via Pixabay.com

The only two things that I did notice back then was that I often didn’t make it in time for the toilet (what child did at that age?) and that I had to miss out on lessons to visit the clinic. Because I had so many ‘accidents’ I would often have what I used to call ‘wedgies’ which were an uncomfortable stinging feeling which would last through the day, but I think that other children have them too.

(One of my first teachers was Polish. I’ll never forget how she offered to rub some flour on me after a particularly painful ‘wedgie’. My dumb toddler brain thought that she meant a ‘flower’, so I pictured a nice wet stem being rubbed on me since liquid was really what I needed. Imagine my surprise when she started sprinkling white powder all over me which stuck to me and made me even itchier)

Cartoon of a clinic illustrated by me

I didn’t mind visiting the clinic as long as it wasn’t during Golden Time (indoor playtime). Some of my fondest memories with my father are of him picking me up during school and the two of us driving to the clinic. He’d play classic 80’s music (Listen to the Music by The Doobie Brothers was my favourite) and we’d have so much fun on the way. Then, he’d always keep me entertained or make me laugh if the doctors were doing something I didn’t like. Even now when I get injections, my father’s hand is the first one that I reach for.

I remember hours of picking up coins to test my grabbing skills, trying out different tools for eating or typing, riding in different wheelchairs and placing my hand or leg in a clay cast to be baked into a device to stretch out my fingers, a walking splint, a typing device, etc. I spent quite a lot of my childhood in that clinic, seeing numerous different specialists.

A picture of my old shoes with the splints in them. I always had to have Velcro shoes because I couldn’t tie laces.

The only way that I could walk was with a special ‘splint’ in my shoe so I would often get fitted for those, especially since I frequently broke them due to the awkward angle I walked at.

DISABILITY TIMELINE: At this point, I could still walk although my disease had already progressed a little bit: my fingers were curled and I had difficulty grabbing. My fingers were perfectly straight and worked normally when I was two but I lost that mobility before my earliest memories began. The only proof of my straight fingers is in family videos and pictures, I can’t remember a time that they were normal.

That’s it from me. I hope you’re as excited about this series as I am! It’s been quite nostalgic trying to dig up my earliest memories. What’s your earliest memory? See you next weekend for my birthday post (it’s on the 29th)!

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