I am 30 now, was diagnosed young at 13 with Charcot Marie Tooth, but it wasn’t confirmed until last year when I was able to get a DNA test and found out that I have type 1A. Knowing that I have type 1A is such good news for me. I now know exactly what I am dealing with and that it’s the most common variety where the research is focusing first. But this article is more about my career, because I’m not one to focus on the negatives, I’m all about making the best of them. Almost every negative has a positive side to it, so this is about mine.

At 13 I am told that I will, most likely, one day need to be fed and taken care of, eat all solids through a straw or with aid of some kind and be in a wheel chair or bed ridden. Not fun stuff to think about as a kid, especially when you want to plan your future and are trying to be accepted by your peers. But I used this as motivation, planning my next 20, or so, years with broad goals that had no timelines. Here I am, 17 years later, and I have but one goal left. I chose these goals not just because they were what I was passionate about, but also because of how they compliment the requirements of my future with CMT.

My CMT requirements were:

1. Money. I am going to be unable to work in the same fashion later in life as I will be able to early in life. I will need to make a lot more money early on in order to support myself later in life.
2. Independence. I do not want to be supported by anyone or a any system, including government. I would rather earn a nickel than be given a dollar.
3. Acceptance. I will not over exert myself. There are things in this life that are just not for me, and I will accept and move on. Focus on enjoying the things that are for me.
4. Dexterity. My hands and feet will continue to deteriorate, so an office job would be best for me. I am not on my feet all day, and my hands can stay busy. Down side is Carpel Tunnel, but lets take the good with the bad here.
5. Flexibility. I need to work from home quite often, and travelling can be an issue because I choose not drive due to my slow reflex speed.

Before getting into each goal, it’s worth noting that these were not done sequentially, but rather all at once. Since there was no critical timelines attached to my goals, I had the freedom to pursue them in a way that best fit my current situation.

 

Goal #1: Learn it all.

I need to be a generalist when it comes to technology, an entrepreneur and salesman for business and a scientific mind for my own personal curiosities and the ability to understand CMT.

For technology I just lived computers. I built them, knew all the operating systems, have been programming since I was 8 and got involved with technology groups. I persued programming and multimedia development quite aggressively, refusing to accept that I couldn’t learn how to do what it was I would want to do. I built many various experiments, learnt an array of languages and soaked up all the information I could find.

 

Goal #2: Get that certificate.

Being self taught can work, but to make money fast I needed that expensive piece of paper. So, in between jobs, I got a student loan and lived in Kelowna for a year, and got my certificate of virtual environments interactive design from the Centre for Arts and Technology Okanagan. With this certificate I now had the knowledge and the credentials to swim with the big fish, and moved to Vancouver to start offering my services as a contractor.

 

Goal #3: Live life.

It’s easy for me to get lost in my work, so I had to make a clear goal to enjoy life. Get out and have fun while I am young and able! This is very important to me, but with all things that bring enjoyment, a healthy balance is the key. Too much play and nothing gets done, but too much work makes this a boring life.

 

Goal #4: Work experience.

I need work experience, and not just as a developer. This is why I took many jobs out of my comfort zone: A sales person at FutureShop to take the sales training, technical support and service jobs to teach dealing with customers, affiliate manager showed what it’s like to have a fancy office ( j/k ), along with project management, server side work and being a website building machine.

 

Goal #5: Contract

I knew I needed to focus on contracting work in order to work out of my home office and still make a decent living.

All of this work experience is what gave me the skills needed to start a successful contracting career. In the early days of contracting I worked for too little. This cost both myself and the client a lot of stress. I couldn’t make enough to survive and the client never understood why something for so cheap took so long. I was giving it away, and didn’t see the harm that was causing, until my room-mate at the time opened my eyes to this mistake. Once I started charging a competitive rate, not only was I happier, but so were my clients. Another benefit to this was that I was attracting much higher quality jobs than before.

 

Goal #6: Teach

We all need a backup plan for when times get tough. Mine was to teach. This is another career that fits into my life with CMT for various reasons. And I became a teacher for a small school, that is no longer around, called the Institute for Advanced Media. At IAM, I taught many courses revolving around web technologies, integration and planning. I had a lot of fun as a teacher, however the longer I stayed the more I felt like I was standing still. I may return to this career later in life, but for now it’s not a priority.

 

Goal #7: Lead

I know I need to be a strong leader, and it’s something I have always been working on. I like to lead by example, and if I am a good example then my team will produce good results, and so far I have been very proud of each and every team I have lead. We’ve developed some  really amazing games, applications and websites together.

The members of my teams would always know that I have CMT, but it has never been a problem in this kind of role… well apart from having poor penmanship,

 

Goal #8: Build a Studio

This is my final goal, building my own studio, which has yet to happen. This one will need some time and effort to achieve, not to mention some capital. After achieving my other goals on this list, I have full confidence in not only my ability to run a studio, but also that this will become a reality. I have lead teams of 12 as a contractor, teams of 7 as an employee, and have the necessary experience. There’s little stopping me here, mostly money, but at least CMT isn’t one of them.

 

Final Thoughts

Instead of focusing on the disease, I focused on how to make the most of my life with it. I planned my goals very young, and executed those plans in a way that worked for me. It’s worth noting that, for the most part, I would keep my plans to myself. Even those closest to me used to laugh when I would share my plans with them. These comments stick with you, and usually do more harm than good, so I find it best to keep my goals to myself, but to live them every day. Find a career choice that fits into your life, and own it. Make it yours, be the best at it and share the knowledge with others.