Happy MSaversary to me!

Written by on February 12th, 2015 – 3 Comments

Capture

Sooooo it’s been a LOOOOOOONG while since I have felt inspired to blog. I won’t lie. I could give excuses but I guess the real reason is I haven’t made time for it. I am more of a chatter box and I have yet to hire a scribe. Today however is a day I felt warranted some conversation. Currently I am 24 years old and my 25th birthday is in only two days yet today always seems way bigger than my birthday. This is because 8 years ago today (at around 11:00am) I was diagnosed with RRMS.

I can remember it was bright outside but cloudy, I was wearing my favourite family guy pyjamas, drinking a mocha Frappuccino from Starbucks, and pumped full of the worst steroid ever: Prendizone. It had been about a week since I had been transported to Sick Kids from a different hospital because there wasn’t a paediatric Neurologist in our town, and 6 months since my symptoms had started. It was also two days before my 17th birthday.aMANDA1

As you can imagine I, like many I have met who are diagnosed young, found this new information to be terrifying and beyond my ability to cope. I was furious. How dare I be diagnosed with THIS. It made no sense to me and I decided to pretend like it didn’t exist. I decided to flee.

It wasn’t until almost a year after being diagnosed when I heard Aaron Solowoniuk’s story that something changed. Here was a hero of mine saying that he had it and he never let it stop him from achieving his dreams. Maybe the fight was not lost. Maybe I too could fight for my dreams.

Right nowaMANDA2 I have only one dream – to see this terrible disease cured.

So I started fighting in the only way I knew how – talking about it. I spoke for the Read-a-thon which lead to another event which lead to another event…you get the picture. The timing of my “coming out” as it were was perfect because I was one of the first people I knew of within the world of MS volunteers who was young and talking about young people being diagnosed with MS. I wasn’t just relieving myself of the burden of carrying MS by talking about it I was educating the Canadian population about a different face of MS – a vulnerable population and a population that felt very alone.

I have had a rocky road disease wise until I started a drug therapy about 3 years ago that actually works for me but I am not without my battle scars – Diapers, catheters, enemas, a cane in my purse “just in case” and sometimes uncontrollable laughter and crying lingers not to mention the threat of another attack always looming above my head – but now I know in my heart after 8 years that I am a FIGHTER.

I was able to complete two degrees with MS, currently teach at a privateScreen Shot 2015-02-12 at 11.29.21 AM school, work a small retail job and Stage Manage for live theatre on a contract basis.

I have met SO MANY amazing people who live with an Episodic disability who inspire me to keep up the fight. I have a small request for all my MSers and really all Canadians – will you join the fight? Start talking about it yourself OR start sharing this blog if you don’t want to talk about yourself and please encourage anyone you know to visit endms.ca

We can end this fight, and we can win it! Who is with me?

Amanda

 

To hear more of my story as well as some other very powerful tales you can also go to http://endms.ca/personal-fight-stories/

3 Responses

  1. F.U.MS says:

    Good job Amanda. I’m with you in ending this fight on MS.

    Aaron

  2. Jacqueline Crawford says:

    Great blog Amanda and bless you for being a spokesperson and fighter.
    Jacqueline

  3. Ashley M says:

    Great post Amanda! I hope you’re doing well! 🙂