February 15, 2017

WHEN IS ENOUGH, ENOUGH?


It’s hard to offer peace to the world around you when you’re doing battle with your own heart. And it’s hard to feel what you need to feel if you’ve labeled some feelings unworthy or unacceptable. What we all need is to feel a little more okay with what is. Not just the pretty, blessed & grateful, but also the gritty, messy & raw. ~VE}


My Sparky boy is so ill. So very ill. The latest? Bacterial Pneumonia. This follows close on the heels of him having the Norovirus & Influenza and a few other unnamed viruses. Add insult to injury, lyme rages on. 8 yrs of hell. No end in sight. Last night it put him in the ER. The degree & extent to which he suffers is maddening. Gutting. I am so angry & so grieved by the sh*t he endures. By day, I find myself storming around the house slamming cupboard doors & cursing under my breath. By night, I weep in a crumpled heap thru the dark. There are no words... only a seething anger burning deep in my bones. 

When is enough, enough?

I have silenced my pain, my brokenness, my rawness. Shut it down. Covered it up. Judged it harshly. Because who wants to put their broken dreams & fragmented faith on display? Who wants to write about the battle in the middle of the battle when your bleeding out & have nothing to offer but raw, embittered rants? What good can come of that? And yet...here I write.  



For among these winters there is one so endlessly winter that only by wintering through it will your heart survive. ~Rilke


I cannot be alone in this wasteland, this eternal winter that knows no end. I cannot be the only one who has felt confounded by the horrors of suffering. I cannot be the only one who has felt abandoned by god. Unseen. Unheard. Unloved.  Is this a narrative that was always in me or have years of witnessing the unrelieved, private agony of my child created it? I cannot be the only one who has wrestled with the weight of this. I can't be the only one hemmed in by the bitter, biting assault of suffering.

I cannot be the only one who's kid can go weeks, months, or even years with little to no contact from the outside world. I cannot be the only one who has stopped sharing the hard stuff because I can no longer tolerate the platitudes or praying for you responses. Not when my kid is bleeding out with a soul atrophied from lack of companionship within his suffering. Prayer does not dry tears, bandage wounds or put food on the table. In fact it is salt in the wound - when one has spent years splayed out on the floor praying, begging, pleading for a reprieve to his suffering. And no relief comes. The perceived silence of god broken only by the anguished moanings of my child. No mercy shown.

When is enough, enough?

I  cannot be the only one who feels let down, even abandoned, by the church. I cannot be the only one who violently recoils at the theories on suffering; This'll make you stronger. God must have a really big plan for ur life. There is a purpose to be found in his suffering. Hearing these theories makes me want to vomit. I get that they are meant to comfort but suffering does not make sense & wrapping up the horror of it with a pretty theory bow can be destructive.

So, no, I do not have peace to offer. I have only the raw unbridled questions of a mother whose child lives a tormented existence. One day this may all make sense. But right now it does not. It hasn't for a very long time. And god feels very far away. And I have silenced this agony for far too long. Scared of judgement. Beholden to assumptions that I am strong & full of faith, I've stymied my doubts & hurts fearful giving them a voice would provoke the same in another or offend. The world has enough anger. Why add more? Yet, in doing so, I discount, denounce, & devalue this part of my journey.

This is the battle. In its rawest form. 

July 16, 2016

THE LATEST LIFE STORM


i recently hiked up cypress mountain. 

i got up at 6 AM (which, for many reasons, is a feat in and of itself), drove an hour, then hiked 3.5 hours in the pouring rain in 10 degree weather...but the view made it all worth it! not.

Vancouver is behind those clouds.

actually, what drove me up that mountain, what is driving many of my outdoor adventures, is a need to escape from a tough reality that has been a dark storm cloud hanging low and menacing on the horizon for the last several weeks.

we found out in june that our house was being listed. again. we went through this two years ago. (read about that here and here). obviously, it didn't sell back then... possibly because of the whole blue tarp of death - read about that in buyer beware lol. the story of the blue tarp and the fact that i was wearing one on my hike is totally ironic. i didn't think of it til i started writing this post. funny.



so the blue tarp of death bought us another 2 years in our home. my little dollar store blue tarp came in handy on my hike and provided a bit of shelter from the driving rain and wind of the day. but, alas, there are no more blue tarps to shield us against the driving elements of this latest howling storm -

our house has sold. we have to move. 

word came this week that the home we have called our own for the last 17 years has been sold. in our world, this is not welcome news. it's hard, disheartening, sad news.

after all, 'our home' was never really ours to begin with. it was always owned by someone else. now a new someone owns it. they bought it AND they want to live in it. the nerve!

so we will have to leave...by december 2016.



{She stood in the storm and when it did not blow her away,
 she adjusted her sails.}

i do not want to leave my home; the only home my youngest two have ever known. and i don't want to leave this city i love with all my heart. yet, the inclement conditions of the vancouver housing (rental) market and rental bidding wars may blow us clear across the country.

i don't know if i can adjust my sails to that.

this latest life storm has got a mountain of emotion to traverse. the winds of it are a howling cold front cutting an icy jagged tear through my heart. i've got a tidal wave of feelings blitzing their way through my body and a torrential downpour of sadness cascading down my cheeks. the dense, dark cloud of it all sits low and thick obliterating my view... of where to go or how to move on from here.

they say home is where the heart is... but my heart is here. in the mountains i climb. in the forests i bike. in the ocean i kayak. and in east van with the kids we work with.

it's gonna take awhile to adjust my sails to this one.


in fact, i've (we've) been grappling with this for several weeks already. and it's just been too hard to write about or speak of because that would mean i'd (we'd) have to really face the full brunt of this storm. this is hard on so many levels and for many reasons. however, we can no longer ignore or deny that a move is looming overhead and there appears to be nothing affordable on the horizon. 

where to go? or more like where can we afford to live? well isn't that the 50 million dollar question.


we've been looking for awhile now and there is nothing that compares to what we are currently in - both for size or price. pretty much anything 3 bedroom for us; even a shared living space (top floor or basement), would mean a complete redefinition of the word budget. And finding an extra grand per month is not something we can adjust the budget to. 

this is hard to share... but we're putting this out there in the hopes that you will share it or that you will know someone who knows someone who has a place we could settle in to.

HERE'S THE SPECIFICS:



we'd prefer to stay in current east richmond neighborhood (avery is starting grade 8 in sept)
or 
make a move into east van (where graham works and where we have always hoped to live.)

a 3 bedroom house or townhouse with adequate storage; (clean, bright, quiet, mold-free environment is needed as both Parker and i have significant chronic health issues)
enclosed garage/storage area as we have bikes

dog-friendly as we have a small, non-shedding dog. (harrison is almost human but you know, not everyone sees it that way, so we have to classify him as a dog.)

move-out date on or before december 1,2016. (we do not want to move at christmas time)

our current rent is $1640. there is not much room in the budget to pay a whole lot more than that. 







May 20, 2016

THE NATURE OF THE BEAST


so i've recently had a relapse of bartonella (co-infection of lyme). 

i started antibiotic treatment (septra ds) for it on april 30. on may 2, i had a bit of a herx (a die off of the bacteria which temporarily increases symptoms) but for the most part it was very manageable (rare) and it didn't slow me down too much. 

i've even been feeling a bit grateful for this relapse because the anxiety i've been living with since getting strep in spring 2014 has been virtually non-existent since starting septra and experiencing the herx on may 2. POW! how fabulous is that? that's been an unexpected and superb side effect i will happily take. (and it could possibly mean that this lingering anxiety that we thought was residual damage from strep is possibly related to an active bartonella infection.)

so all in all, i've actually been managing this relapse ok...until this week that is. 

monday i had an awesome time ripping trails with my eldest, taylor and his dog lily. i was just so happy and grateful to be out there doing that. i never ever take for granted the ability to be able. 

Delta Watershed, May 16, 2016

tuesday we had friends for dinner. i was really tired when i went to bed that night but you know, i had to actually, horror of horrors, cook that day and that is always exhausting to me. i woke up on wednesday morning to an explosion of treatment side effects and a pretty intense flare in symptoms - burning nerve pain in my feet, fatigue, brain fog and stiff and inflamed joints. by the evening, the twitching and tremoring had set in.

i wasn't entirely sure if it was a herx, side effects or a bad flare but what i did know for sure was that i'm in for a bad spell.

sigh.

in a flood of tears, plans for the day and weekend were cancelled, phone calls and emails were placed to my doctors, and a treatment plan set in motion. then i dragged my aching, quaking body off to bed. 

i've been in bed ever since.

once again life comes to a sudden and abrupt halt. rather than heading out on my bike for the many adventures we had planned for this long weekend, i'm riding out a plethora of debilitating physical and neurological symptoms in bed.

not at all how i envisioned this weekend going.

this is hard. the hilly terrain of chronic lyme with its unpredictable crashes, cycling symptoms and ever-changing landscape is hard to ride out.

but this is the nature of the beast.


Squamish - May 14, 2016

"If you are feeling frightened about what comes next, don't be. 
Embrace the uncertainty. Allow it to lead you places. Be brave as it challenges you to exercise both your heart and mind as you create your own path toward happiness. Spin wildly into your next action. Enjoy the present, each moment as it comes because you will never get another one quite like it."  ~ Everwood


i'm trying to stay positive. after all, this could be over as quickly as it started. on the other hand, some times a flare marks the start of a long, slow, painful uphill grind that takes months to recover from.

at any rate, i'm trying to use the down time constructively and wisely... to watch grey's anatomy. ha ha. to blog. to create. to process. to organize the photos on my laptop. oh snap! that could take years. to remember to have compassion for my body. to remember that i am strong and i will come back from this. 

the return of my neurological symptoms reminded me of the recording we made during one of my tremor episodes back in october 2013. during my laptop tidy up and in between episodes of greys, i found it. seeing as it is lyme disease awareness month, flashback friday on IG, and i'm once again living with similar symptoms (albeit not as bad), i've decided to post it. (pardon the editing - i'm no editor plus i had to slice and dice it to get it to fit within IG's 60 second video limitations)


video

i hope it will help shed light on this beast's confounding nature.

from the debilitating yet subtle nuances of it; the fatigue, pain and brain fog that are not visible to the casual observer to the more obvious symptoms such as twitching, paralysis and memory loss.

the bacteria itself is a beast that morphs and changes and is able to silently and suddenly attack your organs and central nervous system in the blink of an eye. you really can be fine and living life one minute and the next you can't get out of bed or think straight.

aside from the twitching, i don't look sick in the video. i'd bet most people would say i even look healthy. this is not unique to me. most people with lyme (or other chronic illnesses) don't 'look' sick -  at least not if you are on the outside looking in. 

the abrupt shifts in ability and our healthy appearances can impact the way others perceive us and cause them to question the severity of the illness we live with.

compounding the confusion is that most of us work really hard to disguise or mask symptoms when we are out in public. which, i guess in some ways, defeats the purpose of trying to seek understanding but most of the time it's just easier to try to appear 'normal' rather than try to explain this inexplicable beast to those who don't have it.

and, sometimes, we hide it because when we have been open or vulnerable about the true nature of this beast, we have been shamed, ridiculed or accused of attention-seeking or over-exaggerating.

i hope this video can shed some light on that. i think we all live with some hidden pain or hurt that impacts us in ways no one else can see. i like to think that if we believe this to be true, then it's not such a far stretch to believe that someone can be seriously sick and yet look fine.

be kind. you never know what kind of battle someone is fighting behind closed doors.