What looks like defeat on any given day

de·feat·ed

dəˈfēdəd/

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

    Somehow 

    I know I haven’t been defeated

    Yet

    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 

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    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

    Unofficially

    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 

    So 

    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

    Everyday

    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

    Because 

    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

    When

    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

    https://www.facebook.com/TruthBeToldMS/
    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. 

    ‘New beginnings are often disguised as painful endings’

    I crawl into bed

    Close my eyes 

    And the first thought that comes to mind 

    Is that I am happy tonight 

    My heart that usually feels so heavy yet so empty feels like bursting with vibrancy 

    My eyes often so tired and strained feel the satisfaction you get after a rigorous workout

    My body equal parts listless and pained feels like it’s tingling with anticipation 

    My mind cavernous and sometimes chaotic is eager for what might come next

    I want to capture this exact feeling in this moment

    In the only way I know how

    Immortalizing it with words and reflecting it back into the world 

    Maybe someone might just be looking back

    In this moment I want to just let go and feel sure that the world will catch me 

    So secure and safe I feel tonight unlike nights where my muscles tense with fears of what was once and what’s beyond

    I want to wake up and bask in the leftovers and soak up the remnants of this moment 

    I’ll close my eyes

    And wake up in the morning 

    And without opening my eyes, I will just know that this morning is different

    With the beginning of a new day carrying only hope and possibilities 

    And not another fucking curse

    And she lived…

    So as some of you may know MS has caused ongoing vision problems for me

    I’ve had optic neuritis several times

    Each time it has stolen a piece of my vision 

    Only to return it scarred and less functional

    I used to be an avid reader

    ‘Used to’ 

    It makes me sad to even write that

    I would devour books so quickly and effortlessly

    I took that ability for granted

    I never thought there might be a time when I wouldn’t be able to

    I can still read

    But it causes pain and irritation in my eyes 

    So I started listening to audiobooks

    But it’s different now

    For some reason the books of before

    Don’t hold my attention through listening 

    So I listen to fluff

    I listen to romance audiobooks 

    With happily ever after endings

    The old me would have snorted and scoffed with derision at this shit

    But anyway

    That’s what I listen to these days 

    A few days ago I started listening to an audiobook that had tons of positive reviews 

    People wrote that it was sad and beautiful and romantic and they cried

    So I gave it a go

    The story progressed nicely

    The hero and heroine met and fell in love

    The heroines sister was ill and eventually passed away

    I thought to myself ‘that was pretty sad’ and was glad I’d moved past the sad part in the story 

    And then

    There was an incident in which the hero ended up in the hospital 

    And his nurse said he’d likely have to start a round of Solumedrol 

    Shit

    I thought

    I know what that is

    It’s a steroid for inflammation

    Don’t let this go there

    I kept listening 

    The heroine had heard of that drug before as well since her sister had battled Huntington’s disease 

    The hero and heroine looked at each other and the heroine asked, with tear filled eyes if the hero was sick

    The hero, with great trepidation and a heavy sigh (that only someone with a burden knows too well) states that yes he has a disease

    Shit

    I thought

    Don’t let it be what I’m thinking 

    He says he has Relapse Remitting Multiple Sclerosis

    Pause

    For me anyway

    I don’t know what the heroine said

    I don’t know what the hero said

    I stopped the audiobook

    I guffawed

    Seriously

    I fucking guffawed

    I got out of bed

    I turned on the lights

    I got annoyed

    So fucking annoyed 

    Why did this guy have to get MS

    MY kind of MS

    What kind of fuckery is this?

    Who fucking gets MS in a romance book?

    I felt cheated

    I passed the sad part of the book

    I wanted the happy ending

    I needed the happy part where everyone is happy and safe and healthy and the hero and heroine get their happily ever after

    I did not want to relate to the fucking hero’s sad shit

    Full stop

    I got annoyed and irritated when I found out I had MS

    When I learned that it was MS causing the blurred vision 

    Then after learning about MS and the possible course of the disease

    I felt fucking cheated

    This was not supposed to go this way

    I conquered anxiety

    I manage my depression EVERY damn day

    This was supposed to be MY time

    Even though I wasn’t reading romance books then 

    I’d read enough books at that time to know

    That every great heroine has to overcome a battle

    And I did

    With great difficulty

    With a lot of pain

    I was ready for the happy ending

    I expected it

    Where was my happy ending?

    I don’t mean the drivel with the love eternal and the wedding bells, 2.5 kids, house and a white picket fence

    I mean the part where I get to live out the rest of my life in peaceful contentment

    Feeling like a heroine 

    Cause I’d slayed my beasts

    And then it came to me

    This is why I’m so pissed off with MS

    So angry so much of the time

    Because I don’t know how this story ends

    I don’t know that the heroine is happy in the ending

    I don’t know how she’ll live out the rest of her life

    It’s like living in a perpetual cliffhanger 

    I don’t know how MY story ends 

    I know how I WANT it to end

    But MS came and put a big huge ‘WHAT IF’ across the page 

    I don’t want to worry about the what if’s 

    I don’t want to lose sleep over the what if’s 

    It’s too many blank pages 

    Some might say that’s the same for everyone

    But that’s bullshit 

    We know the most people will not lose their vision

    Most people won’t be wheelchair bound 

    (My two biggest fears)

    I want to hit play on the audiobook 

    And accept that the hero does have MS

    But I want to hear that the hero wins

    I need to hear that the hero 

    gets his happily ever after

    But what if he doesn’t?

    What if I don’t?

    So I’ve left it on pause

    To be continued

    It’s a picture of time frozen in place after which the hero and his love are together and he happens to have MS

    And I’ll leave it there

    An epic and everlasting ‘to be continued’

    Nothing bad has happened yet

    And everything is a possibility

    That’s my happy ending

    Alive to the universe. Dead to the world

    It’s my birthday today.                          I never do well with these.                   I dont know why.                               Too much expectation?                       On myself of course                          Not the day.                                  There’s nothing anyone around me is doing wrong.                                   It’s me

    36 years old.                                      And at every age along the way           I thought to myself                                By this age,                                               I should have…                              Should have done more.            Should have had more.              Should have been more

    I’m not sure where this feeling of never enough began.                            I only know it persists.               Despite my best intentions.   Approaching every birthday I think to myself                                            This will be different.                       This will be the birthday that I’m happy and content to just be.     Where I will simply look forward to the future.                                        With no expectations.                    Only hope to guide me on

    Every year                                    During the last week of September.    I find myself slipping.               Slipping into a bad mood.                   A dark place.                                            I try to break the cycle.                         I force myself to see sunny skies.  And happy clouds.                             But instead                                          All I see are gloomy skies and threatening clouds.                          And I know my birthday is coming up again.                                 Reminding me that I’m alive to the universe                                            Even if I’m dead to the world 

    People wonder why I make it such a big deal.                                                    I wish they could see the battle inside.                                                      Because it is a big deal.              Where I fight against the darkness trying to take over.                      Where I rail against the face looking back at me in the mirror                    To stop being so fucking sad.               I close my eyes tightly.                      And wish it hard as I can.                  To just be happy for once               This birthday                                    This time.                                             This year.                                              It’ll be different.                                   I’ll be different
    And                                                    Every year                                   Leading up to this day.                     The days feel harder.                       The nights feel lonelier.                    The world seems colder.                 And when it’s time to close my eyes.   And wish wish wish.                         My wish is the same as always.  Despite years of never coming true.  Fuck it.                                                     I wish for it anyway.                         This could be the one time the wish is heard and granted.                            I close my eyes.                            Tightly                                                Tune out the noise around me.           I hold my breath.                              And I let it out slowly.                       And I wish.                                        Once again.                                              I wish to just be happy.                  Even                                                      Just a little