My journey started last year, at age 39. After a series of MRI’s due to back pain I found out I had a mysterious gap in my brain. The doctor ordered an MRI and that’s when I was diagnosed with Dysgenesis of the Corpus Callosum on top of being diagnosed with, as yet unknown to me, brain damage. Not only that, I was separately diagnosed with OPLL which is a progressive disease that causes the ligament in my spine to calcify. So it’s not a stretch to say that I was shocked. In the span of two months my life was flipped on it’s head. I now questioned everything that had happened in my life up to that year.

I couldn’t understand how this was never discovered or how I could have gone through life missing parts of my brain? These thoughts consumed me and the more I thought about it the more obvious it became and the more upset I got at my parents and all the “professionals” whose job it was to notice things like this.

Growing up I never felt like I belonged to anything. I was often bullied by other kids in school and sadly some adults because I didn’t fit in or “act normal”. I barely squeaked by in school and on more than one occasion teachers would tell my parents I was a lost cause because I had a very hard time focussing on and understanding schoolwork. There was an incident in school where the teacher actually joined in with other students in bullying me. I was even taken to a few psychiatrists who all said I was just hyperactive and prescribed ADD medication. Admittedly, most of the time I threw the medication away because I didn’t understand why I had to take it. This type of behaviour went on all through school and even into college. If there was something I didn’t understand I found my own way to work around it or I just didn’t do it. As you can imagine this lead to a lot of the problems in my life. I remember one time my father was punishing me by making me dig a ditch and I got into even more trouble because I kept asking him why I was doing this instead of actually digging.

When I was in elementary school, one day, going home on the school bus I was again being bullied by seniors. Day after day I was pushed around, hit and even had things stolen and I never spoke up about it. But on this fateful day as they were picking on me by picking me up, one of them threw me against the bus and my head landed hard on a bolt head leaving me gushing blood from my scalp. Long story short, no one was ever punished and my paediatrician only wrapped my head in a bandage because living out in the country it was “the best they could do”, which given what I know now leaves me very angry.

I have spent the last year dealing with these revelations, revisiting every event in my life and thinking “if only someone had done their job and I got the help I needed my life could have been better”. I know it’s not healthy to dwell on the past and I normally do my best not to, but learning something like this at what is essentially the halfway mark of life can really mess with your head. As a single person without anyone to lean on it’s been really tough. There were moments that my mind went really dark and had my doctor not prescribed medication I likely wouldn’t be here. Luckily, I started to look into groups on Facebook that share similarities to my life, where I eventually discovered support groups for people with ACC and brain damage. So through reading peoples’ posts and asking a few questions of my own I’ve been able to piece together a good bit of information about ACC and just how it has and is affecting my life. But moving forward is going to be a struggle because even before last year my subconscious has tortured me daily with reminders of every mistake I’ve ever made and every shortcoming I have.

Thankfully I have found a hobby where I can essentially shut off my brain while I work, giving me the much needed escape from myself and the stress in my life. A few years ago I picked up a cheap rotary tool and some landscaping tree castoffs and started carving. I mainly carve walking sticks and canes but more recently I started to, pardon the pun, branch out and shape figures out of the wood. I go out to my little makeshift shop, sit in a thrift store chair where I feel comfortable and can spend hours listening to podcast or audiobooks while I grind into wood. A few weeks ago I had the idea to carve something that represented ACC but couldn’t quite put the imagery together. Thankfully, I have the ACC Facebook groups because with their help I have been able to put together a few designs that I hope to start now that the weather here has finally started to cool off.

Lance