When I Walk

You know when there are so many thoughts bumping around in your head, and you just don't know where to start.

That's me, tonight.

When I Walk was more than I imagined.   More than I expected.

A filmmaking journey that took over 7 years to complete.  The story of Jason DaSilva's life with primary progressive MS is poignant, terrifying, yet uplifting and filled with love.  A story of courage and perseverance better than any I've seen before.

DaSilva conquers the topics of religion, life, and death, yet peppers the story with humility and humour.

My modified-ugly-cry appeared a few times; the waterproof mascara served me well.  This story, and this man, will stay with me forever.

I am in awe of the charismatic Jason DaSilva, and am so honoured to have met him.

The art of re-thinking (and waiting...)

Also known as MS F*$!ing sucks.

I called the MS clinic today to talk with the nurse about my current buzzing, weakness, and imbalance.  The crawling sensation on my face has started again too. 

My instructions: to watch myself for a couple days, then we'll chat again.  Using steroids isn't always effective in curbing a relapse - especially if the symptoms have been around for a while, or are pre-existing.  My leg has felt off for a few weeks now, but it only really started interrupting life yesterday.  Maybe it will pass, maybe it won't.

The biggest decision made today?  It's time to re-evaluate my treatment plan.  Relapse after relapse, symptoms, symptoms, and new symptoms.  I'll meet with my Neurologist in a few weeks to decide what to do now.  New, stronger, medication?  Probably...

Tick. Tock.  Waiting for this time-bomb body of mine is the hardest exercise in patience.  And sanity.

Today was the first time...

I lost my balance, and fell backwards.

I was sorting and hanging clothes in the boys' closet, and just lost complete control.  I fell backwards (thank you, giant stuffed truck from the PNE, for breaking my fall).

I've felt the "drunk" feelings of MS before - weaving a bit while walking, not being able to balance well on one foot.  Today was the first actual fall.

I find these moments come right when I am not thinking about MS; when I am just being a busy Mom, trying to get these rug-rats clean and laundered.

It was definitely one of those oh my God moments.

But I can tell when the MS is starting to engage in my body.  My leg and arm get weaker, my eye gets a bit fuzzy.  It could be stress, it could just be the disease course.  I don't know.

Either way, I can now read this body of mine like a book.  I can tell when symptoms are going to start, and when they are going to progress to something new.

Fingers crossed... no more falling or balance issues.

Deep breaths (and hopefully lots of sleep) for now...

Thirty-four

Today I am 34. 

That number seems fairly young, but holy smokes, I feel about 50.  It's amazing how emotional upheaval ages both the body and mind.

My goal for today: to bring that mental age down a few notches.

I love this time of year - fall is starting, colours are changing, the weather is crisp and comforting.  I find I can stop - even just for a moment - and be more mindful.  It's ok to sit inside, curled up with a book (and some wine) - with no judgement.  Life slows down just a little. 

And I like that.

To me, my birthday signifies the start of this seasonal change.

And like clockwork, this process usually begins with the planting of some heuchera, my favourite fall plant.  I love the deep, rich colours and leafiness of this plant.  It screams get out your sweaters, it's getting cold.  It even looks healthy, right?  A salad for your eyes...

Birthdays are also a great reminder of the people, friendship, and love in our lives.  I am so in awe of the people I get to call my friends and my family.  Thank you for helping me celebrate this day by putting a great big smile on my face...

 

 





 



VIFF

The Vancouver International Film Festival starts soon, and I am so, so excited that When I Walk, a film by Jason DaSilva, will be featured.

If you haven't heard me ramble on about this, watch the trailer here. 

And if you want to join me, I am going to the September 28th showing - the more the merrier!

http://www.viff.org/festival/films/f7250-when-i-walk

This man is amazing - spread the love to him and show some support for MS!

Keep s'myelin

My soapbox beckons...

Children's MS resources are seriously lacking.  To the point I don't want to show them to my kids.  The ones available don't show how individual and changeable MS is.  That not everyone needs constant help to walk, or talk or eat.  As a parent, there is no way I can give my six year old a book about a Mom with MS who has to use a wheelchair.  I can't.  And I won't.

Unless it is my, and his, reality, it is only going to provoke (more) worry and confusion.

I finally found this online resource provided by the National MS Society in the US, and although still not fully appropriate for my family, I love that I can pick and choose what I want my kids to see.  At least at this stage in their development.

National MS Society - Kids Keep S'myelin

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And speaking of kids, I am feeling pretty proud of my two rascals.  Grade 1 and preschool have started with a bang, and I am in awe of these guys:

 

 

Imaging

Over a year of blogging about MS, and I just realized I have never actually shown what MS looks like.

How it is imaged, assessed, and diagnosed.

Most neurologists (although not the first one I saw five years ago - she simply brushed me off and asked if I was "stressed") start with an MRI - of the brain and spinal cord.

I am far too thrifty to pay for each and every image I've had (they'd just become another reminder hanging around, shoved in a drawer somewhere.  I like to think my mental health is thanking me), so here are some examples of how MS has presented itself in me.

I have 15 (or so) brain lesions and 1 large transverse spinal cord lesion.