World MS Day

So today was world MS day. Here in Toronto, they lit up the CN tower and city hall red in support, which I think is pretty cool. I know they’ve done this before, but I didn’t actually know about it. Probably because this time last year I was still in a bit of a weird place with my MS. We are on slightly better terms now. I wouldn’t exactly say we’re really good friends, but we’re working on it. I’ve also actually only recently realized that the “awareness colour” (if that’s what you call it) for MS in Canada is red, I’m pretty sure in most places it’s orange. I don’t know why that is, maybe it’s just Canada trying to be unique.

Anyways, here’s a really cool picture of the CN tower… that I didn’t take, because I can’t actually see it from my apartment ;)

M

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The beginning

My name is Melissa. I’m 26 years old, and in September of 2012, I was diagnosed with Multiple Sclerosis. What is Multiple Sclerosis you might ask? Well we’ll get to that, pushy! But I’m going to start by telling you a bit about the whole ordeal.

Firstly, I’ll talk about about my experience of being hospitalized. I was in the hospital for about 9 days of fun that September. It was the first time I had ever really been in the hospital, other than for maybe a night or two when I was a small child and was dehydrated, but all I remember of that was being given stuffed animals and eating lots of awesome popsicles. This time was a bit different. No popsicles were given unfortunately, though I did get a couple of stuffed animals (mostly cats, of course, because once you have a cat people think that’s all you like :p ).

I first went into the emergency room because I was having trouble opening my right eye, it was starting to sort of droop and felt strange, and I wondered if I had had some kind of a stroke while I was sleeping or something. I didn’t really tell anyone I was going to the hospital, I had gone to the emergency room so many times before that for various strange issues and never really got any answers, but this time, after a CT scan of my brain, the doctor told me I should call my family to come. They really took their time confirming the diagnosis, because they of course want to make sure its not anything else before saying it’s MS, but as soon as one of the doctors mentioned it was something they were looking into, I knew that’s what it was. When I was about 17 or 18 and having some of those mysterious problems I mentioned before, a neurologist casually mentioned that I might have MS, but then for years it was never brought up again, until now. I of course started doing some research on my iPhone (with one eye closed of course, on account of the double vision) laying in my hospital bed, because I wanted to find out as much as I could before the final word came in about it being MS or not. So I waited, in the hospital, getting a blood test every 5 minutes (at least it felt that way) and being sent around for various testing, and of course, complaining about the bad food. Thankfully my family spoiled me and brought me all kinds of goodies so I didn’t have to just eat awful looking (and worse tasting) things like this:

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So before all of this MS stuff came around, I was in film school, studying film production, and  dreaming of working on big feature films one day. When I started, I wanted to of course be a director, like just about every other person in my program, but I soon found my way into working in the assistant directing department (or AD as they call it). Using my newly discovered love for scheduling and planning to try and help the days run smoothly on set. I worked a bit on some independent short films, and one feature, and loved just about everything about it. Every early morning and long night kind of just seemed worth it because I was happy to be involved. I love to be on set, though I struggled a bit with the long hours of being on my feet even then.  It’s hard to know how long my MS had been causing issues before my diagnosis, but as I mentioned I’ve struggled with various mysterious health issues since high school actually, so I suspect it’s been quite a while.

So, you might still be wondering what the hell MS even is! Let me (try) to explain it in a way that makes sense. MS  is a disease of the central nervous system. Multiple Sclerosis basically just means “many scars” (or lesions as most call them) which can be located brain or spine. These happen because white blood cells mistakenly attack the myelin sheath, which is the protective layer on the nerves. As that layer gets eaten away, the nerves are left exposed. Depending on the location of the lesions, all kinds of crazy symptoms can happen! Anywhere from mobility issues, to twitching and spasms, to incontinence, and a whole lot of other crap in between!

Here’s a picture of a brain with MS, the white spots are the lesions. This isn’t my brain, because I don’t have access to any pictures, but you can try to imagine it is, though I assume my brain is much more good looking and photogenic.
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Everyone is affected differently by MS, but it all just kind of sucks really. It’s never a fun feeling to know your body is doing things you have no control over, it can be scary and embarrassing, but it becomes a part of life and we all have to learn to adapt. I met a girl recently who just rocks her MS and doesn’t let any of her symptoms hold her back, even some of the more personal issues,  and she’s totally open about talking about it with anyone who wants to listen! I think sometimes MS can bring out the best in people. I see now that it’s all about the way you choose to live with it. Sure sometimes you’ll want to say screw you to the world for making you have to deal with the craziness, but that can’t last forever or you’ll just be missing out on what your life could be. Trust me, I didn’t always see it this way, and I’m sure there will be times where I go back to wanting to just give the world the finger, but I’m trying.

My MS affects all aspects of my life at the moment. It’s a part of who I am now, and I have to think about things I never did before, like how long can I stand before I need to take a break, or where the escalators are instead of the stairs, but I’ve also decided I’m not going to let it hold me back. This blog is going to follow me as I travel and live my life as an “MSer”. I may have to do things a bit differently sometimes, but I still plan to see the world. While MS has been a big part of my life for the past year and half or so, there’s a lot more to me then just that! So if you read this blog, prepare yourself for some sarcastic comments, and brutal honesty. Having MS sucks, and I’m not going to pretend it doesn’t, but like I said, we all have to learn to adapt. This blog is going to be sharing those experiences, of me trying to adapt and make things work on my travels. Everyone has their battles, and MS just happens to be one of mine.

So onward and upward! Lets get ready to see the world!

M