March 9, 2015

REALITY OF RELAPSE



after 7 months of being stably improved, parker has relapsed
and so,
the fight begins again.




yeah, some battles must be fought over and over and over again but like the hubster said, "no commanding officer would send a soldier to the front lines as often as our sparky has been sent."

the reality of relapse, well, we had suspected it for several weeks now.
he has been home and more or less bed-bound with severe joint pain, brain fog, nausea, dizzy spells, etc since january 19. 

the last 2 weeks has been a blur of appointments and tests. last monday his USA specialist, DR H, confirmed our suspicions - that our boy is in relapse -

we weren't suprised, no. but shell-shocked? yes.

it is one thing to suspect
it is another to have that suspicion confirmed.

it felt like a bomb had been dropped on us
and our world imploded. 
again.

at the beginning of last week, i looked at the hubster and wailed, "i feel like someone died."
"me too." he choked out.

the thing is... relapse IS a loss.

our family is reeling.
torrential tears. white hot fury. wooden numbness. darkest despair. deep soul sorrow. paralyzing fear. 

so i guess the fact that we are cycling through stages of grief makes sense. 
when we consider how far sparky had come in the past year and how it's all been snatched away again - it's a staggering loss.  we had just begun unpacking the trauma of the last 5 years of his fight and now we are re-living the nightmare all over again.

we are living loss again.

we are stumbling numb through a twilight zone we had dared to believe we'd left behind.

and i can't stand it.
i can't handle it.
i am screaming on the inside.
i want to rip my eyes from head so i don't have see
i cannot watch this happen again
and
yet we are. we have.
the last 8 weeks we've watched his decent into hell.

seen him stripped bare of what he had regained
laid up and splayed out in agony

oh my God, where is your mercy?

how do you even find the words to begin to explain the reality of relapse?

it means living with no known time line. no way to know how or when or if he'll come out of this. one must hope, always hope, and yet somehow be prepared for the worst. 

the reality we have known is that it took 5 years of aggressive treatment to get him to remission the first time around.

is that what we face again?

what if it takes another 5 years before he's able to go back to school? it seems incomprehensible but it's happened before. that is the chilling reality.

he's had a childhood full of IVs and pills and tests and needles and doctors visits 
and
he had only just left that behind.

relapse means seeing images we never ever wanted to see again.



relapse means watching your boy get hooked up to IV again and simultaneously re-living his previous 5 years of IV treatment. it's stuffing down the avalanche of grief as your mind replays images of him hooked up to IV at age 9, 10, 11, 12, 13, and 14.



last week, parker re-started IV and it was gutting.
the hubster's heart broke
i heard it shatter into a thousand pieces.

a lifetime will not be long enough to heal that. my God, we will never ever be the same.

grief.
full stop.

the reality of relapse means we are gearing up to fight again

it means pill boxes and IV appointments
it means travelling to the usa for doctor's appointments
it means staggering medical bills




it means having to dig deep before you have the strength to do so.
it means secret tears spilling onto the cold, hard bathroom floor in the middle of the night.
it means fighting the prevailing thought that this will never end.

it means flailing in the dark with no easy answers
it means grappling with intense medical decisions 
it means sleepless nights and churning thoughts

it means your world stops but the world keeps on spinning
and the healthy world
it keeps on living and thriving
while you are plunged head long into the alternate universe of chronic survival 

the hubster and i are mostly numb
and we are walking wounded through an oppressive fog

relapse means contradictory feelings and needs

it means disconnecting from the world yet yearning for connection
it means needing help but not knowing what would help
it means needing to unburden yourself but not wanting to be a burden

relapse means you avoid casual interactions - 

it means bolting from a store just to avoid talking to someone you know
not because you don't like them or want to talk but because you don't know what to say. 

because you just can't fake it that day.
smile bright. nod your head
deflect the inevitable greeting, "How are you?"

because how do you answer that?
how do you tell people my kid is sick. again.  and we are living loss all over again and we fear this hell will never stop.

no, you can't say it. can't bear to say it out loud...because if you do, if you open up, open that wound and let it spill out? 

well, they'll be calling clean up in aisle 15. and that store doesn't have enough employees to scrape you off the floor.

and let's be honest, 
relapse means you even avoid acquaintances, co-workers, and friends 
and
sometimes they avoid you too.
it means few outgoing messages and even fewer incoming ones.
it means avoiding fellowship because you can't afford to risk hearing something trite or some token scriptural quote.

relapse means you are walking wounded with your heart bleeding out and just trying to hold it together so you don't fall apart.

it means a stoic eldest brother
and
it means a little sister scared to go to school and leave her sick brother at home.
it means seeing her red-rimmed eyes spilling hot burning tears and hearing her whisper,

"why is this happening to my brother again?"

it's you crying right alongside her and asking the very same unanswerable question... 

why God? why?

it's the old soul eyes of your boy who has suffered so much
it's the litany of emotion you see there 
his rarely spoken fears and unshed tears 

too raw, too brutal, too overwhelming to give voice to until one anguished, hushed whisper coming late one night, "this is so depressing mom, it's hard to believe i was feeling so good 2 months ago."

2 months.
it's been 2 months already you realize with a wretching twist of your gut.

2 months since the rug was pulled out from under him again.



that is the reality of relapse
and
i wonder how does he keep on keeping on?
his world shrinking from view, 
the long, lonely weeks with infrequent visitors
and
the worry that shouts loudest of all - how much more of this can he take before he breaks unfixable?

Do not let your fire go out spark by irreplaceable spark in the hopeless swamps of the not-quite, the not-yet & the not-at-all. 
Do not let the hero in your soul perish in lonely frustration for the life you deserved & have never been able to reach.
The world you desire can be won.
It exists. It is real. It is possible.




January 14, 2015

HOLD SPACE FOR HOPE


***WARNING***
this post addresses some aspects of depression. it may be triggering to some. i am not a medical professional and this post is not meant to act as advice or replace medical intervention.if you are struggling with depression and thoughts of suicide, please seek out treatment. there is help. 





                                                                    Santa Cruz Beach, CA - Jan 2014


i understand that most aspects of mental illness are polarizing and people have very strong opinions - i tiptoe carefully into this discussion - my deepest desire is to share my personal truth and journey with authenticity, vulnerability and honesty in the hope that it will help some one else feel less alone and less ashamed. i have sat down to write about this a thousand times before only to pull back - for many reasons - i was still too fragile from my own experience, i was scared my struggle would trigger rather than help, fear of being judged, it's too dark, i feel too vulnerable, it's uncomfortable, i'm not healed enough to write about it and share it, etc. then all of a sudden, this post just spilled out of me yesterday. sometimes the story just writes itself and you are the vessel used to tell it. even then, i still sat with it for awhile, thinking long and hard about publishing it for all the aforementioned reasons. as i was wrestling with my thoughts, i opened FB and the first thing that popped up in my news feed was a link to a post about depression....i clicked on it and there in bold, all caps, the words just jumped off the screen at me 


WE CAN TALK ABOUT IT.
It's crucial that we open up the line of communication on this weirdly taboo subject.
JUST TALK ABOUT IT...end the stigma of depression and save lives.

so, i felt like the author of that post was talking right AT me. and it felt like confirmation that the post that had poured out of me needed to be published.

but before i launch into my own story, i would like to recommend you first go to this blog - Hyperbole and a Half  and READ the post titled Depression: Part two

in my opinion, this blog post from hyperbole and a half, depression part two, was and still is the BEST, the very, very best thing i ever read on depression. here's why - if you have never dealt with depression, i think it will help you understand it or if you have or are suffering from depression it will help you feel like you are not the only one and that everything that is going on in you has happened to someone else and if they survived it then maybe you can too. 

Cartoon Source: Hyperbole and a Half Blog
it articulates every thing i felt or stopped feeling during my depression. i stumbled upon it late one night, (and while i was still very much in the grips of depression.) it gave my depression a voice. it gave me a voice. and it didn't trigger me - it actually made me laugh. that laughter was the first genuine response of emotion that i had had in months. even more shocking was that it also had me fist pumping and crying and vigorously nodding my head and whispering "yes. yes. exactly." which was all quite profound seeing as i had been DEVOID of any sort of genuine emotion for months.

it also had me repeatedly elbowing the hubster, rousing him from a deep sleep by screeching "wake up, wake up! you have to read this. NOW. right now. this will help you understand what is going on in my head.

i'm pretty sure that i totally freaked him out - after all, how discombobulating would it be to suddenly have your wife emoting after months of her being in a freakishly zombie-like state. NEVER MIND that it was at 2 in the morning. 

brave man that he is, he kinda stared at me for awhile and then wiped the sleep from his eyes and took hold of the ipad i was frantically waving under his nose.

and after he read it, he said, "i think when things get better, we should share this - it could be such a useful and helpful tool altho it's sorta exploding with the f-bomb. that kinda makes it a tricky thing to share."

- oh yeah, THAT. be forewarned - the f-bomb is used multiple times. i know that some folks will find that really super duper offensive BUT, and please hear me say this in the MOST non-confrontational and loving tone i can muster,

"get over it and read it anyway."
HERE'S THE LINK:(click on it) 
Hyperbole and a Half: Depression Part Two 


The cartoons posted on in today's post are from the Hyperbole and a Half /Depression Part Two Blog...and were created by the blog author, Allie Brosh. This one in particular made me laugh. hard. real hard.
(Be brave and read it and then come back here and carry on reading my post)
_________________________________________

okay, carrying on with my own thoughts on the subject now. 

i've been thinking a lot about the new year upon us and how hard the dawning of a new year can be on people. obviously my thoughts are with those with chronic illness because you are my community. you are my family. and i understand the unique set of challenges we live with.

i know that there are many people that are in a situation that feels hopeless and how things never seem to change. and even tho we've all heard that nothing ever stays the same -some times it just feels that the change is always on the downward trend. sure, things change - they keep getting worse. year after year, you live in survival mode and so just how the hek do you face one more year of THAT?


Cartoon Source: Hyperbole and a Half Blog

for those of us in survival mode, the dawn of a new year can be daunting. disheartening. demoralizing. scary. overwhelming. infuriating. gut wrenching. 

maybe there have been many years where you bravely faced the start of a new year with hopes held high and were determined to think positive change into being - this will be the year that i get better or start to get better or find victory in what ever struggle i've been battling.

and then the year passed and in spite of your best efforts, things actually got worse. and even though you faithfully persevered in doing all the right things that should bring about change or healing, life got a whole lot more painful.

i've been there. i get it. 

i so totally get it.

i'm not going to go in to a lot of detail in this post. i just want to say enough so that  those of you that are down to nothing and drowning in an abyss of hopelessness feel like there is credibility when i say, i get it.

in oct of 2013, i was suddenly engulfed by the dark, thick, suffocating, all consuming blanket of depression. i never saw it coming. no warning. one day i was fine. the next day it descended on me like a bat out of hell.

i fought really, really hard to get out from under it. i tried with all my might and strength to desperately hold on to any shred of hope. i confided in a few trusted friends. i told my medical team. i told the hubster and he listened and heard me and together, we sought the help of professionals and medicine. yet, i became increasingly consumed by thoughts of suicide.

by december 2013, i lost hope. all hope. 

and so i started last year's new year with a plan to end my life. at the time, it seemed like a very rational and logical plan. it made perfect sense to my depressed and upside down mind.

so i get it.

i know that you can be really brave and work really hard to hold on to hope and still lose hope.

i know that you can love Jesus with all your heart, mind and soul and still get sick with depression because depression is an (mental) illness not a spiritual defect. 

i know that you can still have faith and believe in Jesus and fervently plead with him to lift it and yet, despite your fervent and earnest prayers, you can still suffer from depression.

i know that your love for your family/loved ones can keep you holding on and tolerating a painful existence for a very long time and then one day depression can whisper in your ear that your death would be your family's release. and you wholeheartedly believe that lie because depression messes with the mind and twists all reason and logic.

i know that depression makes everything about your life's circumstance seem so obviously hopeless that you cannot understand how those around you cannot see that it is utterly hopelessness. that the people in your life that are telling you differently are either lying to you or just in complete denial of the obvious.

i know that depression can turn everything upside down and inside out and so sideways that no matter how you look at your life, every thing you see seems to serve as confirmation that your life is not worth living and that you are not worthy of living it.

it is hopeless.
nothing changes.
you are a burden.
a waste of space.
a drain.
unfixable.
broken beyond repair.

depression is hitting rock bottom...and having rock bottom give way beneath you. it is tumbling into a bottomless abyss of nothingness. 

depression is totally and completely full of empty. 

i get that life can get so painful, so hopeless, and so terrifying that not living can look like a really good alternative. that you can feel so trapped by your circumstance that the thought of escaping it can bring you a profound sense of relief and euphoria.

i get that life can just be too much and that you have had enough and you don't feel like you can carry on through one more day or one more hour.

i get that.

life can get to be too much. too hard. too painful. too messy. too brutal.

i get that because sometimes it is just way too much

it even makes sense that you have lost hope.

there is NO shame in that. none.

hear me again. there is NO shame in losing hope.

                                                                        Santa Cruz Beach, CA - Jan 2014 

it can and it does happen to the bravest, strongest warriors.

you can lose hope...but i want you to know that you CAN survive it.

hear me again. 

you can lose hope and survive it.


not by trying to get it again - that is too hard. after all trying to have something you don't have is frustrating and futile. in fact, trying to have something that you simply don't have makes you feel like an even bigger failure. it would be like trying to make a banana appear out of thin air. you can't do that (personally, i would never even try because i really don't like bananas at all but that is beside the point.)

the point is, you cannot make something out of nothing - and trying to do so only leaves you feeling smaller, weaker and ashamed - if you have lost hope, you cannot make yourself have hope - but you CAN survive losing hope by just holding space for it.

i want to be clear that i am not suggesting you hold space for hope without support and medical intervention. you NEED that...but here's the thing, i thought that once i got help that i would feel better - and i did eventually- but not right away. in fact, at first, i actually felt worse. a lot worse. i don't know if it is like that for everyone, but for me, i lost ALL hope AFTER i started to get help...because, in the beginning, even the help and support felt totally stupid and pointless and like bullshit. and that made me feel like i was totally beyond hope and help and that was really, really scary. it was at that precise time, that i had to hold space for hope.

hold space for hope.
it CAN be done. 
hold space in your heart for hope to return.
it is possible.

you CAN survive losing hope by holding space for it.

it isn't easy and it can be really, really scary to continue to live and breathe when that space is empty and depression is shrieking in your ear that you are beyond help but if you can hold space for hope, if you can hold it open long enough, hope will return to fill it.

dearest warrior, 
hold space for hope. 
even when you can't feel it or see it or hear it.
hold space for hope.
you are loved. you matter. your life matters.
hold space for hope.
you are worthy and your life is worth living.


hold space for hope
hope will return to fill it.
it does.
i promise you it does.

i held space for hope
and
eventually hope returned.
stronger. braver. wiser. bigger.

PS - 
One more thing!



in the course of writing this it suddenly dawned on me that when i was in the grips of the deepest, darkest months of my depression, that HOPE was so far flung - that it actually felt like a four-letter word to me. i recoiled at the sound of it. to be completely frank,  i thought hope itself was total bullshit. brutal honesty - hope felt more foe than friend. hope felt like the fish hook that had kept me swimming in endless circles that led no where for years.

so i get that you can get to a place where even hope feels more foe than friend

so if you are in that head space, then i will say this to you - hold space for corn.

just hold space for corn. it will find you.



Cartoon Source: Hyperbole and a Half Blog


(if you don't get that, it means you didn't read the hyperbole post - please do.)




December 15, 2014

LEAN IN & LOVE EACH OTHER

our pastor and his family lost their dog, ringo star, last week. his life cut short by sudden illness. (sharing with their permission)




their dog was one of a kind. even harrison agrees with that. we are fairly new to the church but i think it is safe to say that ringo was the "church's dog". he was often at the front door, greeting folks each sunday morning.

upon learning of his passing, my girl wept and wept and wept. i held her and as my shirt grew wet under the weight of her grief, my own tears slipped out to fall silent on her head pressed tight in to my chest. 

grief is hard. there are often really no words. the best thing we can do is just lean in and love each other.

so my girl, she leaned in to me and i just held her. and i ached for her and for this precious family who just lost their one of a kind fur member.

tears slip down my cheeks as i write this now. and i'm finding i have to pause now and then and wait until i can see the screen thru the blurring of my tears. i've asked the hubster if it is weird that i feel compelled to blog about this - but this post, well, it sorta just effortlessly tumbled into my brain as i lay awake last nite. the thoughts were still with me this morning, so i sat down to type them out. it isn't often that my writing comes easy, so i've decided to just go with it. maybe it is a little melodramatic to be so emotional about the loss of a dog that i have only known for a little time. but melodramatic or not,  that is me. i am a feeling person. i feel things really intensely. it is hard to be a feeling person. really hard. i ache for my tender-hearted girl because she inherited her momster's super ultra sensitive gene. at 41, i'm still learning to live with a heart that bruises and bleeds easily... and be okay with that. and not be scared of raising a girl that has one too. and not try to toughen us up. but rather learn to embrace these tender hearts that God has entrusted us with. after all, there is a purpose and plan in how and why he creates each of us.

i didn't want to tell avery about ringo. i knew her tender heart would break and break hard. i wanted to spare her the sorrow but i knew that i could trust God to be with her in her sorrow

after all, isn't that what Christmas is about?
Emmanuel.
God with us.
in our sorrow.
in our pain.
in our world.


as i tucked avery into bed last nite, her pillow was once again wet with fresh shed tears. and i knew her heart was busting up inside her. she lay on her side, tears trickling out from behind tightly shut eyelids. as i stroked her head, she sputtered,

"ringo was my first friend at reality church."

"oh baby girl." i leaned in and kissed her furrowed brow and wished that i could ease her pain. and i found myself welling up again too.

and it got me thinking about my first time meeting ringo...and how when we started at this new-to-us church, i was still very much dealing with active PANDAS symptoms...(read about PANDAS at "This is my brave" post.) getting the diagnosis just a few short weeks after we began attending reality church. this, after a 9 month journey that had quite frankly taken me to hell and back. i had lost a lot of myself during my decent into madness and in the process, my self esteem had been obliterated. i was (am) in the process of healing and rebuilding my damaged brain. some of me is changed - and i was trying to figure out this new me and learn to live with those changes. among the multiple brain issues caused by the pandas, i was suffering with a major social anxiety disorder. and having full blown panic attacks in church. 
just ask the hubster. 

and i didn't want people to know i was sick....whether it be about the pandas or the lyme - not because i was ashamed but because i have lived with the 'sick girl' label for 8 years now. and i wanted to shake it because sick scares people. 

yet, at the same time, i felt like i should come with a warning label. after all, we weren't just 'attending' a new church - the hubster had been approached by church leadership and asked to help run the church youth group. even tho', we very strongly felt that God's calling was upon our lives and that he had led us to this ministry opportunity at reality, i still felt very broken and like i was a total mess.

"i think you should tell them i am defective." i wailed to the hubster on more than one occasion.

after all, i figured it wouldn't take long for them to figure that out. like, that graham guy is great but is wife, well, woowee me, she's a hot mess.

yet, every sunday, despite sweating and fretting my way thru each service and struggling to focus - the message preached came across loud and clear. about truth, love, and grace. boundless grace. amazing grace. Jesus' grace. and even tho' my brain was still misfiring and riddled with anxiety, i could see that grace and feel it lived out by the people around me. and somehow i knew, God had us exactly where we needed to be.


"But sin didn’t, and doesn’t, have a chance in competition with the aggressive forgiveness we call grace. When it’s sin versus grace, grace wins hands down. All sin can do is threaten us with death, and that’s the end of it. Grace, because God is putting everything together again through the Messiah, invites us into life—a life that goes on and on and on, world without end." Rom 5:21 (MSG)

all is grace. 
Jesus is grace.
i could feel it in that place.

then enter ringo.

he was a big dog. his head was waist level on me. he would just sidle up to you and press his head into your side. then he would turn his big brown eyes up to you and LEAN in to you. hard. he LEANED IN HARD and without hesitation.

and that leaning in thing? it made you feel special and loved and like somehow you were the one person in the world that he was choosing to lean in to. 

we could all use a little bit of ringo in our lives. i don't mean walk up to someone and press your head into their waist. no. that would be weird. and awkward. there are some things that are only appropriate for a dog to do.

i'm talking about just bravely leaning in and loving each other right where we are at, right in the midst of our broken, messy lives, because the grace of Jesus is more than enough to cover it all. because we all NEED to feel loved and special because every single one of us IS loved and special - its just that life can make it hard to remember that sometimes. 

so, thanks ringo, thanks for leaning in and loving on me and my girl. and the many folks at reality church. thanks for being such a stellar church dog.


peace out, big guy. 

and thanks Jesus for using ringo to remind us how something as simple as leaning in to people right where they are at can make them feel special and loved.

and thanks Jesus for being the ultimate example of leaning in and loving people right where they are at. thanks for coming head long into a dank, dark and musty stable in order to lean in to our pain, our sorrow and our messiness.

because that is just awesome and awe-inspiring.







Emmanuel. God with us. 
Let us lean in and love each other without hesitation. 
All is grace.

POSTSCRIPT:
i wrote this post last week but delayed posting it until my pastor and family could have the opportunity to read it and give me their blessing to publish it. here's the thing...at the time i wrote it, i had no idea that (literally) within hours of writing, i would be heading into a pandas relapse. the official relapse diagnosis coming 2 days later - after a positive test result for acute strep infection.

my lyme docs have caught it quickly this time and i am already undergoing treatment for it. i am thankful that it has been caught early and we are hopeful that this attack will be mild...but it is still scary to live in "PANDAS land" again. i am also sick with a bacterial lung infection which is complicating matters.

so, this is not so awesome at all but what IS awesome is the outpouring of love and support i am experiencing since sharing news of my relapse. who would have thought that the very thing that this post became about - leaning in and loving each other - is the very thing that i would be in need of within 72 hours of writing about it.

but God knew.
He's leaning in to us. all the time.
even before we know we will be in need of it.
His love never fails.

Emmanuel.
God IS with US. without hesitation.

so thank you for leaning in and loving me.
your prayers and expressed thoughts have been a great comfort and encouragement to me.

and
please lean in and love on my pastor and his family thru their season of grief. remember, the miracle of leaning in is that it doesn't require speech to be effective and you don't need to know the right words to say to bring comfort... after all, ringo never spoke, not a word...but his leaning in to you, well, it spoke volumes.