What looks like defeat on any given day



adjective: defeated

having been beaten in a battle or other contest.
“the defeated army”
demoralized and overcome by adversity

    Is it possible to only feel defeated?

    If so 

    Maybe this is it

    I think this is what defeat must feel like 

    I feel tired from simply existing

    My eyes feel strained and they too feel tired

    Even though 

    I’ve been spent more time asleep  today than I’ve spent awake

    It took me hours to prep myself to leave the house

    Lifting my feet to take a step felt like Herculean effort 

    My voice; raspy from under use, is reluctant to leave my throat 

    The excitement I normally feel at this time of year is muted and is buried under several blankets

    I think it’s there somewhere

    But I can’t quite get it to surface 

    That makes me frustrated

    Because I can’t change any of this

    Not really 

    Yeah sure

    I can change my outlook and shout ‘FUCK MS’ at the top of my lungs

    Maybe even alter my mood from time to time 

    But this fucking disease will still be here

    Even with all of the positive vibes I put out into the universe

    It can’t change the science behind MS

    The lesions on my brain will be there no matter how chipper I act

    The myelin will still be damaged no matter how sunny my disposition becomes 

    My fucked up immune system won’t suddenly correct itself even if I smile really big

    And yet


    I know I haven’t been defeated


    I’m still here

    Still tap tap tapping away at my phone

    Writing shit to lighten the load in my brain and on my shoulders

    Maybe it’s only an illusion 

    The long battle I didn’t sign up for

    The battle I didn’t know I’d need to fight every damn day

    Even on the days when I have nothing left to give

    I still show up

    For the illusive battle that feels like it ended

    I don’t know whether I won or lost

    Because I’m stuck wondering why I’m fighting so hard in a battle that just doesn’t feel like mine

    And yet I remember the feeling of defeat so real I can almost touch it 

    With visions of battle and defeat and fighting 

    I crawl back into bed wrapping myself in a warm blanket

    Thinking to myself

    Sometimes a whisper is more powerful than a scream

    So when I close my eyes, I’ll whisper ‘fuck ms’ and hope that the universe is listening 

    Tens years and a lifeline 

    Ten years that we’ve been married 

    It’s been so much longer though hasn’t it?

    Sixteen years together

    It feels like both a lifetime and not enough time 

    I didn’t know then the difference you’d make in my life

    Though I should have 

    Looking back I should have noticed the way the air felt different

    Thicker and somehow more crisp

    How did I miss the way time both stopped and started going by so fast 

    I should have known my life wouldn’t be the same

    I should have known then that only you could make an outsider like me feel unconditionally loved 

    Only you

    I didn’t know because I didn’t think unconditional love was real outside of maybe a parents love for their baby

    Though I should have known better when I met you

    Nothing was the same after that

    Looking back over these years

    We’ve been through so much

    How did we survive it all?

    So many ups and so many downs

    The only constant has been you 

    Exclusively you

    You’ve seen me at my very worst too many times to count 

    And yet you’re still here

    Always just you

    I must have done something so very right to deserve you

    Whatever it was

    I know it wasn’t enough

    I’ll spend my whole life

    Thanking the universe for giving me you

    Only ever you 

    ‘And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.’

    ‘ I love you without knowing how, or when, or from where. I love you simply, without problems or pride: I love you in this way because I do not know any other way of loving but this, in which there is no I or you, so intimate that your hand upon my chest is my hand, so intimate that when I fall asleep your eyes close.’

    The fountain of youth is empty

    I wanna take a break from our regularly scheduled program of all things fuck MS 

    I don’t have any poetic words or sassy comments for this one 

    When I’m not writing crabby and sometimes hopeful blogs, I’m a youth worker in a contained classroom within a high school setting

    I work with up to 8 youth between the ages of 14-18

    While we are open to working with all genders we do tend to have a largely male population 

    The youths that come to us have sometimes been in similar programming before, or have no idea what we offer

    They come from catholic or public schools, from treatment or detention

    They come from single parent families, two parent families, foster care or completely broken homes

    They come from diverse backgrounds and religious affiliations 

    Some of their families were born here while others immigrated to Canada

    The youth come to us with the official purpose of being reintegrated into mainstream schooling one day


    Well that’s a different story

    They come to us because of negative situations they’ve found themselves in

    At school or in the community

    They come to us from abusive homes or homes where they just don’t matter

    It’s hard to say which is worse 


    They come to us looking for a place in the world to belong

    Even if it’s just Monday to Friday 

    We try to offer them a soft landing spot

    Where they can stop acting or reacting 

    They can just be

    And lately

    More often than not

    They come to us hungry

    I don’t mean hangry type of hunger

    I mean stomach pains and shrinking stomach type of hunger

    Where they go to sleep hungry and wake up hungry

    And teenage boys

    Well they have a very hard time asking for help

    They are reluctant to admit that there’s no food at home

    Fuck it no young person should ever have to face having no food

    No young person should have to deal with the shame that goes with having no food

    On top of all the other shit that goes on in the life of an adolescent

    Lack of food

    Should not be one of the difficulties they face

    Yet they do


    And we become detectives

    Observing their sallow and dry skin

    The way their jeans hang off of them when they never did before

    If they brought lunch

    Asking questions about breakfast or dinners

    And so

    We take them grocery shopping

    And marvel at their amazement in being able to pick out a cereal

    Not the kiddy sugary kind

    But the oat and nuts one

    That are usually just too expensive and out of their reach 

    We watch as they worry about making us spend too much money

    And try to remove things from the cart

    Things we suggested they get

    We struggle to remind them that we are able to purchase this or that for them

    And we wonder what will happen when they’re no longer with us

    It would be easy to say that the life skills taught will be enough to get them from one negative place in life to a healthier better one

    But that’s not the reality they live in

    It’s not the reality I live in

    So we focus on the now 

    We focus on ensuring that they can get to school when they want to

    That they can eat food when they’re hungry

    That they have toiletries and hygiene products when they need to bathe

    But what happens when they leave our program?

    Who takes care of them then?

    When they’re too old for children’s aid to be involved?

    Maybe society needs to step up

    People often like to pretend that there are no children going hungry in our part of the world

    But that’s an ignorant belief

    Take off the blinders

    People are so quick to point out all the flaws and negative behaviours youth might participate in

    Social commentary on parenting and discipline is ever present

    Everyone expresses their sadness 

    But these youth need more than to know that your heart hurts for them

    I understand that this is not the reality in most people’s worlds

    But just because you didn’t go hungry as a kid or because your kids don’t go hungry now

    Does not mean that there isn’t a young person who hasn’t eaten anything today

    All damn day

    I’m miserable when I skip breakfast

    Or if I didn’t have my morning cup of coffee 

    Please remember these youth year round

    Not just on holidays

    Simply put

    We have got to start doing better for our youth  

    All of us

    Me included

    It takes a village…

    Rest well Gordie

    It was just a matter of time

    I knew

    You warned us

    Gave us a last memory

    To hold onto

    You gathered us round and we watched like children

    A magical night 

    Performing your last goodbye

    I was grateful for the chance to whisper my thanks

    And yet all the same

    The loss is just too heavy

    And somehow life…

    It still goes on 

    In the only way it can

    With your words

    With your music

    To get us through

    Another night

    Waking to see what the morning has brought us

    Already I know 

    Tomorrow won’t be any better


    It will never bring another you

    The coldest it’s been

    A cold snap ends

    And the warmth comes creeping back

    Into your limbs and bones

    Warming you up from the inside and out

    Until you can’t remember how cold it ever was

    That’s what depression is like

    It takes over and it’s the coldest you’ve ever been

    And it seems never ending

    It’s so all consuming

    And you can’t even think about all the other people who are just as cold

    It’s painful and numbing all at once

    It hurts your cheeks to smile

    And your tears are too frozen to even start their descent

    Then suddenly and without warning 

    It changes

    The numbness fades to tingling 

    Like a reminder that the body is still alive 

    Cautiously you move forward

    Not knowing when the cold might return


    Not if

    Because it always comes back

    You know it will 

    Greyer and colder than you remembered 

    It doesn’t matter if the thaw lasts for a few days or a few months

    It’s like you forget just how fucking cold it can be

    Until you wake up again and it’s minus 40 and you’re under 6ft of snow

    Everything is hollow and heavy at once 

    And it’s no wonder

    That you can’t remember what the sun feels like on your skin 

    Or the last time you laughed

    Because your heart isn’t just frozen 

    It’s empty instead

    Truth Be Told

    A lovely new friend of mine started a podcast about life with MS. You don’t have to have MS to appreciate Marie’s story and her awesome sense of humour (or how her Scottish accent peaks through sometimes 😬). Marie was diagnosed in the 80s, long before I was but the feelings we share after diagnosis are the same. Have a listen and step into her shoes for a moment.