About Me

The process of creating video blogs of all of my posts has made me realize that I have repeatedly refered to my suffering. I've also realized it's been too frequently and I haven't told the full story about what has caused it.

I don't really like to talk about myself in detail because there is a lot to misunderstand but in the interest of clarity, I thought I'd tell my story so that I can shut up about it in the future ( at least within my writing).

I was born in 1978 with a very rare metabolic disorder. There is an amino acid in food that my body can't process and instead, causes brain damage. Fortunately, I was diagnosed at birth and put on a special formula that contains all of the nutrients i need, minus that one amino acid. In the early 80s it was believed that you only needed to be on the formula until your brain is more developed and so, at the age of 13, I was taken off and was allowed to eat regularly for the first time in my life.

I enjoyed feeling normal for 5 years and then received a phone call when I was 18 letting me know that they were wrong, you'll need to go back on the formula and it will be for the rest of your life. It was disappointing but by this time I had developed side effects that I was anxious to put an end to. One of those side effects was panic attacks. There is a lot of misconceptions about panic attacks these days but I don't mean 'bouts of mild anxiety'. Mine were severe. In the 90s very few people even knew what a panic attack was so, I thought i was possessed by demons.

I began trying to switch back to the formula and in the process I began getting sick. It started with occasional vomiting but soon, everything i put in my stomach came back up. I was 6 feet tall and under 100 pounds so I was hospitalized. The doctors at my local hospital believed I had an eating disorder and dismissed what I told them about my condition because they knew nothing about it. The doctor told me my organs were shutting down and "I'm sorry, but you're going to die". Fortunately, he was wrong and we were able to build my appetite back up very slowly. Unfortunately, this did not include the formula so I still had the side effects from my condition.

Once I got physically healthy, my band was also becoming more popular and we began touring. We toured a lot. I was still experiencing panic attacks but they weren't too frequent and by this point I was so terrified to try the formula again that I just tried not to think about it. However, the panic attacks and other issues became worse and worse until I eventually had to quit music entirely. I realized the only time I wasn't having horrible attacks was at home but I then developed agoraphobia and as a result, I didn't leave my apartment for four years.

I was newly married at the time and it was a huge strain on us when we should have been focused on building our lives together. Instead, I was so sick and beaten down by it all, I was honestly just waiting to die.

In 2010 we decided to move to London Ontario where there was a great clinic for this condition and with their support I was able start getting out a little bit. I began making music again and had a little bit of a life. I was also playing music again. It required me to downplay the severity of my condition to my bandmates but honestly, I did that with everyone.

It wasn't until 7 years later that a new formula was released and my doctors and I established a plan to try to get back on diet. They agreed to provide an in home nurse and we did it! I got back on my formula diet! When my blood work came back normal for the first time in 20+ years, my dietician called on her day off from home. She was crying on the phone when she told me. She also let me know that I was the worst case that anyone had ever heard of. I wasn't surprised but it hit me hard to hear it out loud.

It was like a whole other world. The ability to go out without having panic attacks was completely foreign to me. For a year or more I'd keep my phone in my hand to snap photos because even a trip to Home Depot felt like an incredible memory that I wanted to preserve. Out of nowhere, I was making plans for the future! I was learning to think about life like a healthy person.

I was a guest speaker at the Metabolic Disorder Conference held here in London and it felt like the beginning of a whole new life.

It lasted 4 years. Four years of more thankfulness than I knew how to handle but then covid hit.

Unfortunately the lockdowns caused the distributor to not be able to get the ingredients to make my formula anymore. I was forced to go back to eating normally again. I was devastated and added to the stress of covid, it was too much. I shut down.

After years of illness and then the rollercoaster caused by covid and my formula disappearing, my marriage ended. Living alone during lockdowns made it easy for me to lock myself away again and the depression of losing the new life I had for four years nearly killed me.

I'm back on my formula now but things have never gotten back to the way it was for those 4 years. My anxiety hasn't disappeared this time and I still don't feel free from any of it.

The worst part of it isn't the sickness, it isn't the panic attacks even though they're unbearable. It's not knowing who I am. Not to say that I don't have a strong sense of self because my strength and perseverance comes from God. The problem is, there has been so much damage done from this condition that I don't know who I would be if my brain had remained unaltered.

It makes it difficult to develop relationships. I am very fortunate to have been born with a very high IQ but I do technically have damage to my brain. You'd never know unless you spent a ton of time with me but I'm very forgetful, I seem to think differently than many people, and I tend to keep to myself a lot.

I have no idea what my future is going to look like and that makes me a risky choice for anyone looking for a relationship with me, which is unfortunate because despite my idiosyncrosies, I'm a pretty good dad and have developed some real wisdom from my experience... but i digress.

All of this has been a big part of my life but the lessons I've learned are very useful. One day, I'll move on to my eternity and when I do, God has a new body and a perfect, undamaged mind for me. Maybe I do have damage that I'll never undo here on earth but it won't be long now!