Today I’m going to talk about something a little different. For my normal readers, you will know that I talk about methods and ways to help Organize Your Digital Life. In an ever-digitizing world, It’s important to know how to use the technology that is available to us. That is not, however, what I’m going to be talking about today. Today we’re talking about something that has affected me for a much longer time than I have ever been an information manager.
Back in 2004, I was in Trade School working on my Hospitality Degree (How I got into Information Management is another story) and in December I was studying for my final exams. One of the ones that I was struggling with my business course. I was studying harder than any other exam because I was really stressed about being able to pass that one. Back when I was in high school my parents had this rule which was that if I didn’t get at least 60% or better as a final grade then I would have to repeat the course, which certainly explains why I took math so many times….
The day before my final exam I was feeling a little run down. I assumed that it was the fact that is was my first set of exams for that course and I really wanted to get it right. The morning of my exam was the day that changed my life.
I woke up, got out of bed walked over to the bathroom, hit the light and saw my face in the mirror, but only in one eye. It was early in the morning and it took me a while but I realized that I was totally blind in my right eye. It was as if my eye had completely switched off.
I’ll be honest, the better part of that day, for me, was a bit of a blur. I remember getting my then Girlfriend, now wife, Samantha up and telling her what happened. She then leapt into action and got me to the closest hospital. roughly 12 hours, 5 doctors and 3 hospitals later I was “diagnosed” with optic neuropathy. Optic neuropathy is defined as Damage to the optic nerve for any reason. What this meant (at least to me) was that the doctors knew that there was something wrong but they couldn’t figure out what it was.
I spent several years not knowing what was wrong, not knowing what had happened. I saw a variety of doctors over the years, many of whom still couldn’t figure it out. I will admit, there was a great deal of time where I thought that the problem was me. Every doctor I went to could not pin down exactly what was wrong with me. Because none of the doctors could tell me exactly what was wrong and couldn’t think of anything that I could do to fix what had happened. For most of that time, the thought had crossed my mind that in some way it was my fault like I was defective. This is, I promise, the low part of the story. I promise it gets better from here. it took me a long time to be able to function properly let alone function well. My sight (in my right eye) was just, gone. No rational explanation as to what happened, no way to fix it, and for me, nothing I could do to stop it from possibly happening in the other eye. I went through about a year of monthly visits to an optic neurologist who would look at my eyes and give me his “highly educated and very sophisticated” opinion of what was going on by says “I dunno…”
Suffice it to say I stopped seeing him. at the time I was getting angrier and angrier with the total lack of answers. In 2007 I went to the head of Neurology at Johns Hopkins in Baltimore. Despite coming up with just as many answers as the other doctors he did ask that I get MRI’s done every year and send them to him. He wanted to keep an eye on me (no pun intended) to see if my case developed at all. At that point, I was starting to not see the point in getting MRI’s done cause I assumed they wouldn’t find any answers. Just the same I was pushed by my now Wife to get them done. I would get them done, send them along to Baltimore, and nothing would happen. I wouldn’t hear from the doctor, and nothing would happen. Year after year of nothing. It was a weird time for me. I had learned not only to function perfectly on just the one eye, but I had also let the possibility of getting MS fade almost completely from my brain, almost.
During Thanksgiving in 2010, one of the things that my family does is go around and talk about the things we’re grateful for. I was reminded by Samantha while writing this post that the thing that I said I was thankful for was the fact that I didn’t have MS. I wasn’t thinking about it a lot, but it was in the back of my head.
Four years (and four MRI’s) from the original trip to Baltimore I got a call in early 2011 from the Doctor in Baltimore. My latest MRI showed signs that there was some plaque on my brain. He wanted me to come back to Johns Hopkins for more tests. I went back and after a full day of testing, I was diagnosed with Relapsing-Remitting Multiple Sclerosis.
SCIENCE ALERT: For those of you who don’t know what MS is, It’s a form of auto-immune disease. Auto Immune (in simplistic terms) is when your immune system, which normally protects your body, changes and starts attacking your body. In the case of MS, the immune system attacks the Mylin in your brain. Mylin is a fatty substance that protects the neurons in your brain. When my Immune system erodes the Mylin and neuron’s touch, stuff stops working. Think of your brain like a series of copper wires, when you strip off the rubber sheathing on the outside of the wires and touch two wires together they stop working. This can cause loss of motor function and cognitive function, along with a bunch of other effects that impair your ability to function.
When I got diagnosed It threw me for a bit of a loop. In the back of my head I had always considered that it may be a possibility that I would get diagnosed, but until I actually was, I think that there was a part of me that hoped that I wouldn’t. In my personal life, I was afraid that it would affect my ability to do the things that I did normally. I had a small daughter and my wife was due to deliver my son in a few months. I wanted to be able to be there and not have to be hindered by this disease.
It did change, however. Certainly, in my personal life, I had to start taking daily injections of a medication called Copaxone which was designed to minimize the number of episodes I would experience. We also made a decision to sell the house that we were living in to move to a house closer to the city. The reason for this was so that if there was an “incident” then an ambulance would be able to get to where we were living relatively quickly. When I got diagnosed I was living on a stretch of land on the St. Lawerence River which was far too far from any hospital. It was odd looking for a house where the only specification that we were interested in was either having the house be a one-story bungalow or have wide staircases. This was so that if I needed a wheelchair we would be able to accommodate that. This, to be clear, was a MASSIVE knee-jerk reaction to my diagnosis. It’s a fact that only about 15% of people with MS eventually find themselves in a wheelchair.
In my professional life I was desperately, and in retrospect unreasonably, afraid of the consequences of my working life. At the time I was the information Coordinator working at a property management firm in Ottawa. Back then I thought that because MS can possibly cause cognitive issues I was concerned that the people I worked with may assume that I had cognitive issues and would not trust me to do my job. I loved doing what I was doing. I was really good at keeping the company’s files organized and I had gotten to a point where I was a trusted source of information. My fear was that if the fact that I had MS were to get out then people would start to either not trust my judgment or start questioning every decision I made. I made the decision not to tell people generally as I didn’t want it to affect my work life. I should probably mention that it didn’t affect my work life at all. I was just scared that if people knew then they would judge me.
The diagnosis also had a different effect on me. It made me feel better. It may sound strange to you but getting the diagnosis was one of the best things that have ever happened to me. It means that going blind wasn’t because I was defective like I had thought, It was because I had MS. Once I was diagnosed I figured out that I had to make a decision. I could either become a victim and develop that mentality or I could do something about it. I decided rather quickly that I was going to do something about it, I started off by joining the MS Society of Canada. I have to say when I first got diagnosed I felt very alone. I didn’t know anyone who had MS, and I wasn’t sure where I was going to go with it. At the MS Society, I was able to gain a sense of community. For me, it became less of me on my own, but me joining a group of people who are working on figuring out how to deal with this disease.
I quickly realized that one of the best ways that I could do something to help the MS Society was to raise money. I started off by raising money by participating in a charity Golf Tournament a few years in a row. There I was able to engage with the Society as well as other members and learn their stories as well as share my own. it really helped me develop my sense of community.
In 2014 I moved to Toronto to start work with a new company and I was feeling guilty about not participating in any MS events. IN a white-hot streak of luck I was contacted by a guy I knew named Shane Miyama. Shane Was introduced to me when I first got diagnosed. He was a university friend of my sisters and he also was diagnosed with MS. While I was living in Ottawa we corresponded a couple of times, but this time was different. He was putting together a fundraiser to raise money for MS research. The words he used in his e-mail were “I know you’re living in Ottawa but if there is anything you could do I would appreciate it.”
I’m not ashamed to admit that I had my doubts about this. joining this fundraiser would mean that I would have to tell the people that I worked with that I had MS, While the people at my last job (the ones I’d told at any rate) had not changed their behavior towards me, I didn’t know this new group of people well enough (at the time…I was there for like 2 months) to know how they would react. So I did what I normally do When I’m conflicted about something. I talked to my wife Samantha.
“Don’t be an idiot, It’ll be fine.” My wife is direct if nothing else. So feeling sheepish and a little silly for worrying about it I contacted Shane and told him I was in. In June of 2014, we put on The Night to Fight MS, and it’s been one successful yearly event after the other. One of the other outcomes that came out of that first event was that it was a way for me to “out myself” in a constructive way.
The reception to my having MS was everything I could have hoped for and more. Not only did people seem to be concerned without questioning me, but they also appeared to be interested in what I was going through. That knowledge has empowered me to feel like I can talk about my MS. While hosting Night to Fight in the past five years I have come across more than a few people who have been affected by MS. Either they would be diagnosed themselves or they knew someone close to them who was diagnosed.
It has empowered me to do even more to further the cause of MS. in 2016 I joined a few members of the Society and went and talked to Members of the Ontario legislature as an ambassador for MS, to get the Ontario Government to fund more projects which would help people who have been left disabled by MS.
Today is international MS day. It’s important to pay attention to MS. Currently, it is a disease without a known cause or a known cure. Despite all that, there is always hope. Doctors and researchers are working hard on figuring MS out.
I should also say, Night to Fight MS is having it’s fifth event this year, and it’s going to be a good time. If you’re in the Toronto Downtown Area on June 20th I highly recommend you buy a ticket. We’re going to have a silent auction and live music. You can get your tickets at www.nighttofightms.com I have also put a link to Night to Fight’s website, so you can buy your tickets there.
Typically I ask a couple of questions at the end in the hopes of starting a conversation, but in this case, I would only like to make a request. If you know anyone who has MS, share my story with them. let them know that they are not alone and that there is always hope.
Let me know in the comments section below. If you like this blog post and want to see more, you can follow me on Social Media (LinkedIn, Twitter, Instagram, and Facebook @jasonlovefiles) or Subscribe to my blog to get new content delivered directly to your mailbox.
Thank you for sharing and inspiring others.
Thanks for sharing You are a wonderful inspiration to others!
You are very brave to share your story; your courage throughout the whole process has been inspiring to me. Thank you so much.
Hi Jason, you are still my hero! It was great to read your very inspirational story. You and Shane are doing amazing work raising money for MS Research. Good luck with this year’s fundraiser at the Distillery District. I will not be attending, but your article reminded me to make a donation today!
Hi,
I was just dropping in a quick line to know, if I could send some great article ideas your way for a guest post at your website ?
If you like my suggested ideas, I can then provide you high-quality FREE CONTENT/ARTICLE. In return, I would expect just a favor of a backlink from within the main body of the article.
Do let me know if I can interest you with some great topic ideas?
Best Regards,
William R.
Hey William,
I actually have a page on my site called “ask Jason” where you can drop me some suggestions for articles. I’m happy to look at what you want to send me.
Jason
Way cool! Some very valid points! I appreciate you
writing this article and also the rest of the website is extremely good.
Sending you prayers, I was diagnosed in 2010 and seemed to go down hill quickly. In six years I could no longer work and had real problems with balance and joint pain. Brain fog was really bad sometimes. I took rebif and had a lot of problems and had to quit. I have been on techfadera (not spelled right) for a few years and have several side effects. I felt lost and decided to quit my meds due to side effects. Our care provider introduced me to Ayurvedic treatment. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS. Visit Natural Herbs Centre web-site natural herbs centre com. I am very pleased with this treatment. I eat well, sleep well and exercise regularly. God bless all MS Warriors