My Year in Review

As the hours tick by and we're getting closer to the new year, I wonder what I'm supposed to say about the old one. Looking back over the last 12 months, I feel like not a lot has changed, but really so much has.
What am I supposed to write about anyway? Am I supposed to write about feeling truly invincible for the first time, being around my people, drinking fizzy drinks by the pool in Vegas, looking at this city lit up with so many lights? Do I write about the struggles I overcame, the battles I won, the wars I made it through?
Or do I write about the slamming doors, the screaming fights, and everything I still - 12 months later - cannot handle? Do I write about the tears I cried, so many I thought there was nothing left? Do I write about how I let my heart break open on the back of an old grocery list while I was babysitting one night, and in that night I wrote the most truest sentence I know: I want to be enough for myself.

January began with good intentions. It was the month where I was going to stitch everything back together. The year 2012 began with longing, and anger, and watching chick flicks on TV. The month didn't end with quite as much ambition and inspiration as it started with, though.

In February things got better. It was a month filled with late night poetry, a month of doing big, bold things. February was a month for living.

March was for decisions, for choices, for loving without thinking and living in the moment. It was watching too many episodes of Grey's Anatomy and buying fancy shoes and letting go.

 April was a spontaneous month full of teenage angst. I went for a month without washing my hair, and I laid on the deck, wrapped up in a blanket, missing Spencer. We moved into our new place and I camped out on the floor and I cried because everything was changing.

May was for loving, for remembering to breathe, for making new friends and figuring things out with some old ones. I wrote stories with happy endings and some stories with not so happy endings. I lived in metaphors and I was optimistic and I began to understand light, but May was also the month when I was being prepared for the darkness.

In June I finished my grade 10 year. I got sick, and complained about being sick. I wallowed in my misery and threw a pity party and rained on my own parade. I was asked the most important question, about life, and what life was for me, and I decided I wanted to live, really live, whatever that meant.

I spent a week and a bit of July down in Calgary, and then in Edmonton. I missed friends and let myself be consumed by teenage emotions. I ran my first 5K, I went to the zoo, I watched music being made, and I learned what it is to live. And then the vigil began and the world crumbled underneath my feet and I knew it was only a matter of time before disaster struck.

August was for lounging by the pool, being surrounded by my people, and feeling invincible. I wrote the most powerful sentence on the back of that grocery list, I started eating Gluten Free, I wrote so many words it felt like I'd cried for a really long time, and I crossed something off my bucket list.

September was when everything crashed and burned. For me, September was burning red, just like the leaves on the trees. It was the month I got diagnosed, the month when everything I had worked so hard for was handed to me and all of a sudden I didn't want it anymore. It hurt more then I thought it ever would, and I had to learn to live all over again.

October was filled with more grieving, more confusion, more isolation and anger and frustration. I threw a highlighter against the wall and made this big orange mark. In October, I also began to learn who my friends were, who the people were who were going to fight for me and drag me up to the surface and teach me how to breathe again.

In November I turned 16. The Glycosade trial happened in November. My heart broke in a hospital bed, in a doctor's office, in a hotel room, at the CFR. My friend Taylor died in November, and I held the people I love closest to me. Friends stayed up with me until the wee hours of the morning, making me laugh, making me cry and reminding me I am loved.  I got my act together long enough to write a whole novel, and even if it was mostly crap at least I accomplished something.

December was full of truth like twinkling Christmas lights. I spent nights writing poetry, and discovering friendships that have become so important to me. Friends spoke truth into my life, leaving me to examine what it is I really believe. I got angry, and my heart broke all over again. I wrote so much I didn't understand what I was saying anymore. It left me battling big questions, questions I still don't have all the answers to, but I really wish I did.


2012 was not at all what I expected. Looking back over the year, I guess it wasn't as bad as I thought it was. The broken things, the sad things, the heart breaking awful things, they were all there, but in smaller pieces. Love was the biggest piece of all, overshadowing everything. It shone through in a late night conversation with a friend, an apology after a screaming match, someone looking into my eyes across the table at Subway and speaking truth into my life. It glistened loudly in the words, "I love you," in excited laughter shared between new friends, in first love and friends that end up surprising you.

In 2013, I hope to answer some of those unanswered questions. I hope to create, to embrace, to become. I hope I learn how to live, and I hope I love a lot. I hope to gain some understanding, and to learn how to let go. I hope to unwrinkle this page, and I hope I still recognize the person I see there.


Happy New Year!

This was my song for this year. I think it totally describes the year I've had. Take a listen, if you want. :)

I'm the girl who always says goodbye but never knows how to leave

I know I'm always writing so you think I'm good with words but I can hardly express how I feel.
There's so much going on in this head of mine, so much I wish I knew but don't.
I wish I knew where I was going next, but I have no idea. if I did I wouldn't be hiding behind so many paperbacks and staring at so many blank walls, hovering in door ways, coming from no where and headed no where.
I'm the girl who always says goodbye but never knows how to leave.
Tonight is one of those nights when I wonder if I'll ever be able to write the things I want to, if I'll ever be able to figure out this thing they call life, if I'll ever be able to stop wandering long enough to get myself un-lost.
I feel like I can only repeat the words other people say, grasping at sentances and paragraphs with cold fingers, trying to find some wisdom in the words of others.
So this is me, trying to get it right this time.

I have solar powered confidence and a battery operated smile. My hobbies include editing my life's story, hiding behind metaphors and trying to convince my shadow that I'm someone worth following. You know, I don't know much, but I do know this: I know that Heaven is full of music. And I know that God - He listens to my heartbeat on His IPod. It reminds Him that we've still got work to do.

Twas the Night Before Christmas

It's the night before Christmas.
Everyone is snug in their new Christmas Eve pajamas. Tomorrow will bring the excitement of opening gifts and eating Christmas dinner with family.
But tonight is for silence, for listening for reindeer feet on the roof, for writing and contemplating and thinking how much things have change from last Christmas to this one.
We went to the Christmas Eve service at our church tonight. Last year we were in Manitoba so we didn't go to our own little Christmas Eve service and I found myself missing it, missing the way you saw friends as soon as you walked through the door and the beauty that went around the room as we all lit our candles.
This Christmas, I'll confess, I wasn't feeling very Christmasy. I was in the Christmas Spirit at the beginning of December and now that Christmas is actually here I was ready to be done with it all. Pack up the decorations, put away the tree, let's just move on with the time of year when everybody is supposed to be all happy and joyful.
And then there was the Christmas Eve service tonight and there was this one song that kind of changed everything for me.
It's been one of those years, one of those years when it feels like I am stretched and grown in every way.  It's been one of those years when you're broken down to nothing and then have to start rebuilding yourself again. It's one of those years when you kind of want to ask, "God, seriously? What are you doing here?" And I had to really ask myself if I believed God was enough to get me through this. There were a lot of days when I really didn't know. There are still days when I don't know, when I'd rather run from this place where God has brought me instead of continue forward, when I feel so broken and angry and sad and confused and I don't get it.

I was reminded of something tonight, something that I've been reminded of a lot over the past few months.
You are loved
It started with that one moment in early November in a hospital room and it's following me, being called out to me by mother's of friends and former piano teachers and friends. They all remind me of one thing: You are loved, more than you can imagine.

He loves me. He loves me enough to come to this sick, broken world and die for me. He loves me enough to not let me stay here in this place of pain and hurt.
He loves me, and because He loves me I can trust what He's doing.
And He says, "Something good is going to come out of all this, just you wait. Hold on, something great is going to happen."

My Soul Glorifies the Lord...

Red

I want to write about being a teenager. I want to write about that moment when you’re in high school and there’s this guy and he looks like the toughest guy out there and then he looks at you and singles you out of the crowd and talks to you and you feel like you’re walking on air as you walk out of the school building. I want to write about when you get in a fight with your best friend and you end up screaming at each other because everything in that moment is so alive and vibrant and everything is being felt under a microscope. I want to write about falling in love, and getting your heart broken. I want to write about how sometimes things happen one way but when you play it over and over again in your head you change little bits and pieces of the script and then you remember it that way. I want to write about changes and snapshots of things you keep laying around like Polaroid’s and dried up flowers that you keep on a shelf in your shoe. I want to write about that one moment when everything else fades away and you’re there and you’re laughing and you’re learning how to dance again and it feels like its infinite.

 I want to write about all of these things because they are all parts of the story. They are all a part of this tapestry that is woven on the cusp of becoming something great. It’s like magic, like flashes of light and stardust. It’s breathing in and laughing and crying and flirting and being angry and feeling like your drowning and then… gasp… you exhale.

 It’s all about being brave, being heartbroken, being excited and being in love and being alive in this moment. That’s what being a teenager is about. And the bad things, they’re just pieces. Things shift and move and nothing stays the same forever, not even the things we think will ever go away.

 Everything changes, a fortune cookie told me once. Nothing is permanent. Life is short, enjoy the ride. What no one ever told me was how.

Cynicism and Nostalgia

I want to tell you how Tim McGraw is my favorite Taylor Swift song, and I’m not sure why, except it makes me feel nostalgic for a boy I never even knew. I want to tell you about movies, how I can never stay awake through the end, and that one time, in the dark basement, huddled under my favorite zebra blanket, I fell asleep like usual, and my best friend shifted next to me, letting my head fall onto his shoulder. I want you to ask me about adventures and tell me about your adventures, all the nights you stayed out, wished on shooting stars, wishing again and again that the night would never end, swinging high into the air at the elementary school playground in the middle of the night, tipping your head back to gaze at the stars, letting your hair drag across the ground and shrieking with laughter when a boy you’ve just met grabs your waist and, “I shouldn’t have told you I was ticklish!” and he just laughs back at you, and I want to tell you about the time I broke into a church and we ate Popsicles in the back room, ducking down whenever headlights grazed across the window, and I want to tell you about standing outside a boy’s house, everyone with their arms wrapped tight around their bodies to block out the cold, and I want to tell you about his mom inviting everyone in, and shivering on a wooden chair inside his house while you sip hot chocolate in an effort to warm up. Tell me about the way you grip onto memories with white knuckles, refusing to ever let go of them.

Reading this makes me nostalgic for a place I only went to once and a person I don't look like anymore.
Summer turns into Winter and people change and grow up and I know all of these things. I know that never again will things be like they were in that memory that I hold on to with white knuckles.
I'm much more cynical now then I was when I was that girl in the memory - the one who believed in magic. I felt more free then, more alive and bursting within my own skin, more passionate and spontaneous and I loved without questions. It's kind of hard to believe i was that girl once.
Sometimes I ask myself what I would do one thing for myself, one self indulgent moment, one moment of feeling totally spontaneous and alive, what I would do.

I was a lot less cynical once, believe it or not. I believed in the world, I had faith in myself, I had faith in other people, I trusted life a little more.

If I could do one thing, anything, I think I would write a million words that all felt like coming home. None of these words I write are what I think they will be about. Some of them are about desperation and heart ache, but some of them are beautiful, about life in all of it's forms, but mostly, whenever I write these words, they taste hopeful to me.

And so, after a night of fierce desperation and panic and frustration, I whisper the words I wish would be true:
Help me release Cynicism.
Help me let go of bitterness and frustration.
Help me release the cynicism about where I belong and who I am now.
Help me remember I belong here, that I am the girl who dances barefoot to Ed Sheeran love songs on the radio that sound like break up songs.

This week I began writing my story, the birth story, the death story, every minute of this transition from the girl in the memory to this one, and hopefully back again. A year ago writing the words I'm writing now would have felt so far away from the me I thought I was.
But it is my journey, my story, my truth. It is empowering and inspiring and hopeful. And I am working on releasing that cynicism and the bitterness, the unforgiveness and the pain. It's a long, hard road, but I'm working on it.

So I keep writing words that feel like home, and it makes me nostalgic for that girl I don't look like anymore, and for the place I loved once upon a time.

"The Great Love of My Life has a malfunctioning G-tube"

I'm sitting here afraid to cough, or sneeze, or move in the wrong way.
One of my greatest fears was confronted today.
This morning, my g-tube got caught on something while I was moving and got pulled out. The balloon was still inflated, it just wasn't inside my body anymore.
After that first moment of pain, when I actually saw that my tube was no longer inside of me, my reaction was, "Oh crap!"
I started shaking, and crying, and I called my mom.
Both of my parents were at work, and no one else was home. I was freaking out.
My dad called and talked me through how to put a new tube in (Which wasn't the easiest thing to do when my hands were shaking and stomach fluids were leaking out)
Long story short, I got a new tube in. I was staying drugged up on Advil and any pressure on my stomach hurt really bad.
Tonight it's really loose. I'm afraid if I move the wrong way, or cough, or sneeze something will go wrong and the tube will come out again.
I'm sitting here, all wrapped up in tape and bandages.
I have a malfunctioning G-tube. And suddenly so much depends on the malfunctioning G-tube.


"So much depends upon the transparent G-tube erupting from the gut of the blue-lipped boy. So much depends upon the observer of the universe.”

Need You Now

My friend wrote on her blog today about being tired.  I'm tired. Flares or Bad Days are one of those things you just can't avoid when you're chronically ill and yet they are a big deal. They are dramatic and messy and can send you tumbling back down the steps you just climbed until you feel as though you must start all over again.
I am peering around in the darkness. I am aware of my weakness. I am aware of my great need. I feel lost and alone. It's hard to remember why you're doing this in the first place.
Do not forget in the darkness what you have learned in the light.
The thing about bad days, for me, is that the rippling effects don't come so much from my physical pain but from what's going on inside my head.
"I need you!" My fingers are grasping around in the dark for something to latch on to, someone to hold on to that will tell me it's ok, that I'm not alone, that this moment of frantic needing will pass, that they've been there too.
"I need you!" I whisper in a voice that sounds much too tiny to belong to me.
"Don't ever be sorry for needing me," He whispers between the words.
***
I am in a place of desperate need. It really bothers me when I come to a place like this because I have this image in my head of how things are supposed to be. I'm supposed to be strong and I'm supposed to be able to handle this by myself and I'm not supposed to need people at 9:00pm to remind me I'm not really dying, that I can do this, that I'm not alone.

I don't understand everything that's been going on. While I am peaceful about it all I am far from understanding it all. I don't understand why babies who are only a few months old are born without iris's or why teeanger's get diagnosed with another chronic illness that sends life spiraling out of control.

I'm tired. I'm desperate. I don't understand. I'm needy and worn out and weary and I don't have this whole thing figured out yet, even though I think I should. I am weak when I feel I should be strong.

 He loves me. It's ok to need, to not understand, to not have it all figured out.
This raging world that I have been thrust into makes me fall to my knees, groping around in the darkness for a glimmer of light. This world which I have become a part of in a whole new way leaves me shedding tears for new little ones who have been thrust into it as well.

In THIS world you will have trouble, but I have overcome the world. (John 16:33)

Worn

I've stared at this blank page for almost half an hour.
Today was rough. It was a sick day.
Just from walking up a flight of stairs my heart rate jumped to 160. I was nauseous all day, and in a lot of pain. I couldn't eat and exhaustion settled in.
I stayed home from school and slept all afternoon.
Today I was surrounded by my weakness.

It's been a tough journey these past few months. I have been surrounded by my weakness, my failings and the places where I was not enough.
It's a tough place to be in. I've been here for a while - since getting diagnosed in September - and while some days it is easier to see the blessings then others there are days like today when I am tired of fighting this battle against invisible illness. I want to get better. I want to feel better. I want to be able to worry about school and grades and enjoy basketball games with friends.

It's hard some days, and I don't have it all together. Days like today come when I am weary and worn.
But these days too were planned out before I took my first breath.

Because.....pain.....for a believer....is God's stamp of love on your heart.

Pain is God saying...."Child. I am crazy about you."

Can you hear that? Through the pain and the tears and the exhaustion I can still hear the victory ringing inside of me: That I am claimed, that I am loved, that I am His.

A Sneak Peak at my Night

2 Corinthians 5:17
"If anyone is in Christ he is a new creation. The old has passed away, the new has come!

In the Middle of it

When I read the words in the picture, something struck me and I've been sitting here for the past 10 minutes trying to figure out how to put that in to words.

In the chronically ill circles, strength is something to be admired. On a consistant basis the words, "You're so strong!" are heard from a number of different types of people. The answer that usually comes is, "Really, I'm not."
Because I'm not. I'm not that strong, I'm not that brave, I'm not that courageous.
Also, strength is a kind of a label. You become the strong one, and with that label comes the feeling like you aren't allowed to fall apart or be emotional. My life is about what is needed from me. It's about holding things together. This is my job, that's what I do. I do what needs to be done. And maybe that does make me strong and brave but it's just my job, it's what I have to deal with because I don't have another choice.

The words "Where your strengths are irrelevant" really struck me. My strength has nothing to do with how I get through the day, or how I put up with everything I do. When people tell me I'm so strong and I tell them I'm not, besides just saying that I'm just doing what needs to be done, it's kind of my way of saying my strength is irrelevant here. My strength has nothing to do with how i get through every day.
On those days when I don't want to be strong anymore, or when I quit, it's not my strength that gets me through those days. There are so many days when my strength is gone and I can't take this anymore, and it's His strength that gets me through those days.

It is in this valley of the shadow of death called chronic illness that my weaknesses are evident. I can't hold the world together, I can't hold my life together, I can't control the reactions and emotions of people around me in regards to their response to my situation. When the Glycosade Trial didn't work it was my fault, it was my body that couldn't get it right and accept the drug. (I know this isn't true but that's how I felt.) Every time my body refuses to adadpt to a new treatment, or every time they can't get an IV in or every time I am in so much pain I can barely breathe my weaknesses are glaringly evident.

But it is in these hard times I have learned to trust. I was thinking the other day maybe that's why the loss of health due to another diagnosis is so hard to deal with, because you have to learn to grieve in the storm. There's no when this is over, you deal with it in the middle of the storm. You learn to trust God in the middle of the storm. And that's pretty crazy, and really hard sometimes. There are so many times when I've wanted to say, "Ok, God! Just give me a break here and I'll trust you. Just let me catch my breath and stop for a minute and get my relationship with You back on track and we can keep going." But there is no stopping in the valley of the shadow of death; I must keep on walking.
And it is in the middle of the storm where i have found some of the most beautiful things. It is during these storms God has drawn me closer to Him.
Sometimes I take my eyes off Him and look at the winds and the waves surrounding me. They are big, and scary, and it's easy to become lost in the storm. I begin to sink, my strength not enough to sustain me and keep me from drowning.
"How many times will I have to scoop you up before you just learn to follow me?"

Here my weaknesses are evident. My strength is irrelveant.

Eyes on me, I've got you, I'm not going to let you drown.

Because when my strength isn't enough, His is always enough.

Gilead: a place of healing

It was like cancer.

Not in the literal sense of the word, obviously. Dysautonomia isn't related to cancer, or a kind of cancer. But it was like a cancer, for me. It was poisoning everything beautiful and good I once believed in. At least that's how I look at it.
I wrote something before I got diagnosed and I wrote that it was like tunnel vision, like I was obsessed with this one thing. It consumed me, and my life became about this one thing. It was like a cancer in my body, destroying me, poisoning everything good until it became only about this one thing.

A while ago I was reading this book and it was talking about casting out demons. It was the first time I really got it. It was talking about, when Jesus cast out demons in the Bible, people were no longer a slave to their insanity. While Jesus did physically heal a lot of people, somehow I don't think that's the point. I think it's about no longer being a slave to that insanity inside your head. It's about being free.
Dysautonomia isn't a form of cancer, but for me it destroyed everything good and beautiful in my life. For a long time, I guess I was a slave to the destruction and chaos that was surrounding me. I remember multiple times during my undiagnosed stage just crying out to God and wondering how much was enough? When would I finally be able to stop feeling like everything good I had was being taken away from me?

Healing isn't a one time deal, which I am still figuring out. It isn't about a one time surrender. It's about daily, hourly even, lifting our hands in surrender.
At my (Mom's friend? Former youth leader? mother of the 2 awesome girls I love to death? role model?) anyway, at her baby shower my mom was asked to give the devotional. She was talking about the passage in Exodus 17, when whenever Moses had his hands raised, his side was winning the battle, but whenever he lowered them, they began to lose. So his friends came along side him and held up his arms.
It reminded me a lot of chronic illness, and the battle that goes on every single day. Without surrender, the internal cancer wins, and everything begins to fall apart. But in that surrender, with hands raised, the demons are cast out, and I am no longer a slave to that insanity in my head.
With hands raised, He comes in like life saving chemotherapy, or radiation or a bone marrow transplant. He comes in and rescues me. When I live in complete surrender, the destruction can't pull me under.
I am being asked to walk on water. I am being asked to continually keep my hands raised, even when I'm tired, even when I'm sick and nauseated and every muscle in my body screams, even when my blood doesn't flow where it's supposed to, even when I am in so much pain I can barely breathe. Even then I am asked to surrender. Even then I am asked to say, "Not my will be done but yours."
And I can't do that alone. Over the past 2 and a half months since being diagnosed, I've had some of the most amazing, unexpected people step in to my life and help me keep my hands raised. They have loved me in to a place where I want to find healing, fought for me and with me, reminded me of who I am, but more importantly who my God is. I am so grateful for these people.

I don't know is physical healing will ever come. I don't know if there will ever be a cure for Dysautonomia, or for GSD. But as long as I keep my hands raised, I can win this battle. As long as I keep my eyes on Him and let Him cast out my demons and breathe life into my body when I have all but given up then I can be free from this internal cancer that threatens to poison everything good.
The hurt meets the healer, demons are cast out, and I am set free.
Daily, hourly, moment by moment I surrender. I look into the eyes of the only one who can really heal me, not only my sick body but also the stuff going on inside my head.
With hands raised, I surrender all I am for all He is. In surrender I find healing. In healing I find hope. And in hope, I find freedom.

  And then head spins "Where is God in this mess?" and the heart knows the answer, "Right here."
God is right here with us, and He knows
This pain is what He did for us, willing. He knows this hurt because He chose it to save us.

16

I am 16 *
I am what I am
Don't you make me to be
Anything less than the true heart of me
If sixteen is a number
Then what could it mean?
Does it limit my thoughts, my passions, my dreams?
Take me out of your box
I have no place there
I'm too wild for that
It wouldn't be fair
If you say that you know me,
Then look inside me
And ask me the questions you think I'll hide
I'm perfectly willing to open your eyes
Are you too scared to look into mine?
I'm more than a song you've forgotten how to play
I'm more than the words you can't seem to say
If sixteen is a number
Then why do you care?
Does it change who I am
Or all that I've shared?
Don't you tell me the things you want me to be
Who are you to say what you think you should see
If I am what I am
then sixteen is my age
But it's not a number that defines me today


I've spent the morning listening to birthday songs. In the secret society of the sick, birthdays are a big deal. It's another year of life! And I've made it to 16!
Here's some of the birthday songs I've been listening to this morning... a little birthday treat for you

* Adapted from Wake Up Generation by Paige Omartian

4 years

Today my body is too heavy for me.
It's been 4 years, 4 years since the night of the coma, when I went to sleep and didn't wake up the next morning.
This year feels different then every other year. Maybe it's because I got diagnosed this year, that this year we found out the diagnosis behind the condition that has been causing me pain for the past 3.5 years.
It feels like it wasn't that long ago, but it also feels like forever ago.
I feel too old for my body, like I've lived so many more years, seen so many more things than I should have.
I can't run away from the past. It follows me. I am physically tattooed, the reminder of what happened scarred into my skin - in my leg where they put the IV thing into my bone (still have no idea what that was!)
It's a weight I can't put down, these diseases that I pull along behind me like a ball and chain. It's more like they are weights packed in along side my bones. It is all inside of me. The battle I am fighting is one with my own self.

I don't know if many people know this but I am terrified of sleep. Some nights are worse then others. I used to have panic attacks. I thought they had gone away, mostly, until I had one when I was in the hospital for my glycosade trial.
Sleep terrifies me, which is kind of weird because I do a lot of it.
It's been that way ever since that day 4 years ago when I went to sleep for 4 days and almost didn't wake up.
I'm scared that I'll stop breathing, stop existing.

And so I make jokes and pretend everything is ok when really I'm sitting here at 11:30 at night afraid to go to sleep tonight.
I'm just tired of this sickness, tired of the memories of days I can only half remember, of what almost was.
It's scary, hard, makes me so grateful but also anxious. I lost myself since then, and am starting to find myself, maybe. I feel so far away from that girl and yet I am that girl.

4 years ago today...

The Greatest Thing...

So I read Eva Markvoort's blog these past few days. All of it. From when she started writing in 2006 to when she died in 2010.
I don't know why I started reading her blog, or why when I started I read through it all.
Pages and pages, so many entries written by a vibrant red headed girl.
She wrote about having CF, about her lung transplant, about rejection, about life, and love.
And I read all these entries. I read them as I was sitting in front of my computer after Taylor's memorial chat on SBW and when the pain in my stomach was so bad I thought maybe my appendix had burst.
I read them on my phone by the bathroom light as insomnia and pain kept me from sleeping.
I read them in the afternoon's, when I was too exhausted to do much and I wasn't sure why.
I finished reading them tonight...

I am amazed by this girl. Reading through her entries, she's gone some of the same places I have. I wonder, if I go there again, I could catch some of her crazy strength. I want some...

***
It was US Thanksgiving yesterday, and I've been reading posts by my US friends sharing what they're thankful for. Even though Canadian thanksgiving was a month ago, I am still so grateful.
I am thankful for love.
***
I was pondering this thought during my late night reading of Eva's blog. Eva loved, a lot, which maybe was what got me thinking about love.
I'm loved too, a lot.
These past few days I'm just feeling it. This love is giving me hope and strength and courage.
I've had so many people reminding me in this past month that I am loved. Being loved makes me happy.
I made this little collection of cards on my wall. Eva had one, which is what gave me the idea. It's my wall of love. It's filled with cards and pictures by people who love me, and little things that remind me of being loved. It's pretty small right now (a dozen or so cards) but every time I look at it it makes me smile. There's cards my parents made for me in the hospital playroom when I was little, a birthday card I got in the mail today, letters and cards my friends made for me when I had my scopes last November, a birthday card I kept from my 9th Birthday that my Grandma wrote a poem in, a big huge card everybody at my old school signed for me when I came out of my coma, a card my 2 friends from SBW sent me. There's the little string of old bravery beads I used to tell my story when I was in the hospital the beginning of this month.
They all make me feel loved. It's pretty awesome.
There's not really a point to this post, no meaningful message, just love. Maybe love is the most meaningful message of all.

The greatest thing you'll ever learn is just to love and be loved in return

Run with the Wild Horses

 

I watched this video and almost cried. I remember a time, last year, before I got diagnosed, when I would want to go riding but the thought of getting out and saddling up was enough to make me want to go crawl back into bed. If I did get out there, by the time I was saddled up all I wanted was to go back to bed, and if I did make it to going for a short ride, I came inside exhausted and in pain.
It was that winter Freedom (My horse) got sick, and I was sick, and I wondered how either of us was going to make it through that winter. I remember whispering to him one day as I hand fed him to try to help him gain weight that we were going to make it through this winter, both of us, that we were going to be fine, that we were going to make it.
By some miracle he made it through that winter, and so did I.
In early October, I went out to see him at the lease where he was being kept. After searching for a few minutes, I finally saw him, running through the pasture. The other horses being kept there began to follow him, and they all began to run, and Freedom - the horse who nobody knew if he was going to make it through the winter - was leading the herd.
I made it through that winter too. I made it through the spring when I felt like I was losing everything, the summer of knowing but not knowing, and getting diagnosed. I'm here now, I'm making it.
I made it through the winter, and spring is coming. I can feel it, feel the transition that is taking place. I'm getting ready to run.

Pancakes and Angel Wings

Today I got the news that another SBWer - Taylor - died from complications of CF.
And it sucks because even if we weren't close, she was one of us, she was part of the SBW family.
Things like this, they kind of make me go all clingy. I just want to grab everybody I love and stick them in this bubble because I don't want to lose anymore people I love.
I don't know if you ever get used to the feeling of losing somebody you knew.
So tonight I ate pancakes with my family, and I played 2 extra rounds of dutch blitz with my brother and I sent text messages to my friends telling them I love them.

Tonight I'm mourning the loss of a friend, a member of this amazing family I'm proud to be a part of called StarBright World.
Breathe Easy, Taylor. We love you!

Did you say it? I love you. I don't ever want to live without you. You changed my life. Did you say it? Make a plan. Set a goal. Work toward it. But every now and then, look around. Drink it in. 'Cause this is it. It may all be gone tomorrow

Last Night

The Hurt and the Healer

This isn't the post I was going to write. I was going to write an update on Nanowrimo (30,000 words!) or just random things going on in my life.
But I think God has a way of changing the post you want to write into the post you need to write.

I've been stuck. Since September, I've been stuck. I don't want to be stuck, and I didn't mean to get stuck, it just kind of happened. I've been stuck in pain and hurt and I don't think I really wanted to get out. Mostly because the pain I felt since being diagnosed was real and big, and it was something to hold on to. It was easier then letting go of the pain and the hurt and waiting to see what happened.

I was writing today in my Nano novel about how it kind of reminds me when I was a kid. There was this 'big' (Big in my 6 year old mind, tiny in my almost 16 year old one) grove of trees where my friends and i used to play. We would climb all over the branches and play all these great games. I remember once, my friend and I were playing we were stuck somewhere, or I was stuck and she was trying to rescue me. She cried, "Don't worry, I'll save you!" There was a flying leap, a sheer moment of panic as I watched her fly towards me, the moment right before she got to me... and then we were both on the ground, safe from whatever imaginary danger we were pretending was there that day.
 I was thinking that's kind of like my relationship with God right now. I'm stuck. I'm hanging out on a tree branch. And God's like my friend, saying, "I'll save you!" and there's this sheer panic I'm feeling as I'm certain I'm going to fall to my death, and then there's the catch, and relief when I find out we're safely on the ground.

I've been stuck for a while, and I think God's been trying to get my attention. I haven't been listening, I've been too busy clinging to that flimsy tree branch trying not to fall.
I got diagnosed and I thought I was done, and then God said, "Let's go deeper..."
Deeper? Are you kidding me?!? If I go any deeper I'll drown!
And He whispers to me like He did to Peter, "Eyes on me, I've got you, I'm not going to let you drown."
Do I trust Him? Do I trust that He's got me and that I'm not going to fall to my death if I let go of everything I've been holding on to? Do I trust that if I let go of this sack of ashes He is going to exchange it for something beautiful?
I can feel Him nudging me towards this next journey, a new version of the Valley of the Shadow of Death, whispering in my ear to let this go. It's time to let it go.
I've come too far to remain stuck in this pain and hurt.
So I have a choice to make. Do I trust Him or try to do this on my own? Do I resist and possibly drown myself in the process, or do I trust Him that He's not going to let me drown?

I want to let go. I don't want to be stuck anymore. I'm letting go

The truth about Diagnosis

So my first post was featured over at Disease On My Sleeve today.
It's really weird, seeing something I've written up on a place that's not my blog. It's weird to try and believe I actually wrote that.
But I am so excited to be a part of this project and be a regular contributor over at DS. This is something I'm really passionate about and I hope I can make a difference in the lives of people with chronic illnesses. (Plus, the team I get to work with is pretty amazing too!)

So check out my first post, and let me know what you think!
http://www.diseaseonmysleeve.org/post/35705925713/alishadiagnosis

The Small Victories

Sometimes I forget how blessed I am to have such amazing people in my life. I was reading a blog post written by my friend Courtney tonight, and she just reminded me of how there is victory not only in the big things, but in the little things too.

I've been so focused on the things I can't do, the things I've lost, all the negative things, and tonight I was just reminded of how much of what I am doing right now is a victory.

I'm eating when a few years ago they thought I never would.
I'm going to 'regular school' this year for the first time since grade 7.
I'm walking and talking and awake when I never should have been.
I've met the most amazing people because of being sick, people who continue to inspire me every single day, and are there to pick me up when I fall.

It's so easy to take the little things for granted. When life is one big battle and winning doesn't even seem possible, it's so easy to forget all these little victories, the things they said I could never do and that i am doing.

When I was at my doctor's on Friday, He told me that I could do whatever i wanted to do, that each step I'm taking is a small victory and to not let my conditions or having GSD or having Dysautonomia hold me back.

It's in the small victories where the battle is won. It's so easy to look over the things that seem so little because there is so many hard things, but these things really are victories, little battles that I keep winning day after day.
The fact that I am here is a victory, a battle I have won. The fact that I am eating is a battle I have won. The fact that I am able to go back to school this year (even part time) is another small victory.

It's not in the big things that the battle is won, but in the small victories.

I

Even if the Healing doesn't Come

I guess I should probably update everyone who doesn't already know on how the rest of the trial went. I'm home now - catching up on some much needed sleep (Seriously, I am sleeping all the time! Crazy!)
Basically the second night of the trial wasn't any better then the first. At 1:00am (ish) when they checked my blood sugar I was already low, which gave me a panic attack.
I was just really freaked out over the fact that I was low already. Obviously I was glad they hadn't let me go to the hotel for the night, and I was just really uncomfortable with the whole thing. I don't think I really slept after that.
What kind of calmed me down was just knowing that whatever happens God is still God and He still has a plan for my life.
I remembered one of my favorite verses in Romans 8: 37 where it says "No, in all these things we are more than conquerors through him who loved us."
I basically re-worded it and just said even if this trial doesn't work, I am still a conqueror because He loves me.
It was actually a really cool experience, and I just felt a sense of peace about the whole thing. I decided that I didn't want to stay and do the trial another night, I was done.
Around 6am my blood sugar went under that 'safe zone' and they had to do the IV rescue (Basically pumping me full of dextrose and then starting an IV drip to get my blood sugar back up)
When the doctor's came by in the morning I said I didn't want to do anymore, so they released me Friday morning.
And we went to the CFR that night and I got to at least fufill one thing on my goal chart by meeting a cowboy.

Coming home has been a lot harder then I thought it would be. It's really dissapointing to have this not work out. My parents are talking about maybe trying this again at home over Christmas break.
Right now I'm just trying to take one step at a time.
I'm still holding on to faith, believing God has a plan, even though the healing didn't come this time.

2 months

Hospital Update

1 night down...
For those of you who don"t know,I am currently in the hospital for a glycosade trial. Glycosade is a super starch, similar to cornstarch but longer lasting. this is basically going to replace my feeding pump for overnight.
I got here yesterday, and the trial started last night.
So I thought, while I'm here in the internet cafe of the hospital, I'd give everyone a bit of an update.
So I got here yesterday, started my IV (Had to call in the best of the best, a doctor that works with my amazing doctor, Dr.M, but we did get it first try!) and then the trial started at 10.
I was actually really nervous because there was so much that could go wrong. I still am nervous!
I have some of the best friends,though, and a few of my friends, as well as the amazing team of people I work with over at DS, sent me amazing messages of encouragement, just reminding me they are with me every step of the way and hoping for the best.
The trial started last night, and it didn't quite go as planned (But then what do I ever do that does go exactly according to plan?!?!)
I took my first dose at 10pm, which I almost threw up. They were hoping to get this dose to last 6 hours, but at 3:30am I had to take another dose (5.5 hours). The next dose should have lasted me until 9am, but it didn't do that either and at 8:00am, my blood sugar was under 4.0 (Lasted me somewhere around 4.5 hours, I think.)
Tonight they're going to try again. I met with my doctors this morning and they are going to up my dose, just to see if that will hold me longer.
Looks like it's going to be another sleepless night, with nurses coming in every half an hour to an hour. The Glycosade is administered through my G-tube now, so I don't have to drink it, which is a huge relief. I'm still pretty nervous, though, about how everything will go.
I also have my MRI tonight which I'm also kind of worried about. I'm not so worried about the MRI itself, but more the results of it- which I'll get Friday morning.
If all goes well, I should hopefully be home Saturday.

Thanks for all the prayers and thoughts coming my way. I'll post more after the MRI, this next attempt with the Glycosade trial and when I get this IV out of my hand!

Thankful, Excited, Inspired

Write 3 things you're thankful for/excited for/inspired by

I'm thankful for writing, for the ability to write my heart out. It gives me clarity, and perspective, hope. Just being creative, I guess, always brings me back to that place where i can just be still.

I'm thankful for community. I've tried thinking of something else to go here, but nothing else seems to want to fit. The community I've been thrust into, in this time period after being diagnosed, is a lot different then the one I would have picked for myself. There's a lot of people in this little community that have surprised me, and a lot of people who aren't there that I thought would be. But it turns out this little community is exactly what I need. I always used to think, "Oh, I'm losing everything!" And I guess in a way I have lost a whole lot, but I think, now, I'm not losing, I'm just slowly rebuilding.

I'm excited for the journey ahead. Even though it's been hard, I think I'm also thankful for the journey of being undiagnosed. It was worth it. When I think of the journey ahead, of life after the diagnosis, I know it will be hard, but I'm excited for it.

What's in the bag? Day 4

What's in your bag?

A view inside my bag is not something people usually see. Inside are little cornstarch splatters, something that makes me smile every time I see them. It's kind of a disorganized mess...

So, here's what's inside of my bag

* Dental Floss
* Wallet
* Gum
* Mittens
*My phone
* A water bottle (I don't know if I really go anywhere without it these days. I never used to take my water bottle anywhere, but now I always find I put it in my bag. Also, people with Dysautonomia get dehydrated easier. I don't actually know if this is really true for me, but just in case, I want to make sure I have water on hand.)
* Medical letters
* Salted Peanuts (With Dysautonomia, you're supposed to increase you salt intake. I've been noticing I'm craving more salty things anyway, but I've been using it as an excuse to add salt to my seasonings list, just in case)
* Extra G-Tube and things in case I need to change my tube when I'm out (No idea why that's still in there.)
* Emergency kit with snacks (Crackers, granola bars...)
* Cornstarch
* Glucometer
* Glucose Tabs
* Tiny stuffed Elephant
* Little pooh bear on a chain
* $4.25
* Kleenex
* empty Chemstrips container
* Batteries
*Bandaid

And a whole bunch of garbage I just dug out from the bottom of my purse (Which I just cleaned out and put in the garbage)

I don't know about this, but I'd like to...

 I don't know about this, but I'd like to...
*Go Skydiving
*Become an actual author
* Graduate
* Raise Awareness for Invisible Illnesses

Quotes and an Awareness Video

Day 2: Find a Quote and Use it as Inspiration

I've been excited for this post, and also anxious. I love quotes, but really, how do I pick just one?
There are a lot of different quotes that mean a lot of different things to me. There are a lot of quotes, too, I'm finding i don't know how to explain what they mean to me. So instead of just writing a post about one quote, I thought I'd share a few of my favorites - the ones that mean a lot to me right now.

Be Brave Enough to Break Your Own Heart

The Secret Places of My Heart are often visited by Strangers

I am a wild thing. My Nest is gone. My Sanctuary is ripped out of order.

We grow attatched to our scars. I was attached to them. Maybe I still am.

She never belonged to me, but I always belonged to her.
(This is one of those ones that doesn't make a lot of sense. When I think of it, I think of it in reference to being undiagnosed. It never belonged to me, it was never mine. And yet, I always belonged to it. make sense? Or is it just in my head that that makes sense?)

It was a strange tingling that made her think of Phantom Limb Syndrome, but this tingling was rooted much deeper. She felt like parts of her soul were missing, had left her body long ago. It happened not 3 months ago in Greece, but long before that. It was in Greece she realized these parts had left her and were not coming back.
(I know I shared this one before, but I think it really does capture a lot of how I feel. I have been asked, "Oh, well you knew it was coming, so it can't be that bad, right?" And I want to tell them the same thing, nothing left me on September 10. I knew the diagnosis was coming. It was just on September 10 I realized what was missing, and that it was never coming back)


I also saw this video, today, and wanted to share.

Maybe it will help you understand just a little bit more about what life with Dysautonomia is like...

So it begins...

In one crazy moment, I decided to sign up for National Health Blog Post Month.
Basically it's where I blog about my health every day for the month of November. I'm still trying to decide if that's crazy or not...
Given that I am lucky to brush my hair for 30 consecutive days, I'm a little worried about how this will go. I'm also going to try to do Nano again this year (Just for fun! because writing 50,000 words in one month is always just for fun!) so we'll see where this month takes me.

Day 1: Why I write about my health...
I'm finding this to already be a hard question. Why do I blog about my health? Why does it come up in my writing, here, in my novels, everywhere? And then I realize it's because being sick is such a huge part of who I am.
It's not an easy concept trying to write down why I write about my health. Why I write about it today might be different then why I write about it tomorrow, or why I started writing about it when I started this blog. I just write about my experiences, which are largely influenced by my medical conditions.
When I started blogging all those years ago, I was just going to write about my life. I think, for me, it's always been just writing about my life.
I've learned that being sick, being a patient, it can be very dis empowering. It can rob you of your voice, of feeling what you're feeling, even. It's single handedly the hardest thing I have ever done in my life. It's scary at times, usually pretty emotional. It's so easy just to lose yourself, to become a patient, to become your illness.
Every time I write (whether that be here, or in a novel, or in my journal) I'm taking back a piece of myself. Just for that minute, while I write, everything is ok. I am whole again, everything is ok, nothing else matters.
I have discovered that, through blogging, my voice about my situation can become a voice for others. It can inspire them, give words to their feelings, reach out and touch people and let them know they're not alone. I think that's the biggest reward that comes out of blogging.
This blog has helped me raise awareness for illnesses like GSD and Dysautonomia. It's helped me find my voice. Writing a blog, and reading other people's blogs, inspire me daily, not just in writing, but in living a life with chronic illness. I guess you could say they give me hope.

So there you go, that's a few of the reasons why I blog.

It was a strange tingling that made her think of Phantom Limb Syndrome, but this tingling rested much deeper. She felt like parts of her soul were missing, had left her body long ago. It happened not 3 months ago in Greece but long before that. It was in Greece she realized those parts had left her and were not coming back.

 

Dysautonomia: What You Need to Know in 5 Minutes or Less

I saw this and had to share
As Dysautonomia patients, we are constantly clarifying things, telling people what it is (And what it isn't), telling people how to spell it and people telling us what we should do to get better (As if we haven't already thought of that!)
So, here's a quick Dysautonomia: What you need to know in 5 minutes or less


Dysautonomia : What you need to know in 5 minutes or less

One Voice

This year I had the honor of blogging for 40 days for life again. I was a part of this last fall - blogging for the Calgary 40 days for life blog, and in January I went to the side walk in front of the clinic and experienced for the first time the real-ness of this situation and what really happens on the other side of the sidewalk I hear people talking about.
It makes me wonder about how we can be silent about something so important, when lives are ended each and every day.
Here's my thoughts on that one time in January when I went to the sidewalk. God changed me there.
I am so blessed to have had this opportunity to blog for 40 days for life once again, and to use my voice.
One voice, I believe, can make a difference


http://calgary40dfl.blogspot.ca/2012/10/day-31-dear-god.html

The Invisible Moments

My life is measured by the invisible moments.
I live life with an invisible illness. I live my life in the middle of the invisible loss that comes with them.
I am continually amazed at the silence surrounding invisible illnesses. There's constant awareness in the news for things like cancer (Anybody else see all that pink this month?) and yet, while 96% of people with an illness have an invisible one, the awareness for all types of invisible illnesses is small.
Why did I not know about this before the sacred was taken from my life? I want to ask. Why is there such silence surrounding invisible illnesses.
I have a theory. It has something to do with being invisible. It has something to do with a quote I read once:

People anoint bodies in hospital beds with words like “fighter” and “miracle” and “goddess” because of the cultural urge to wrap up formative life events with neat little bows. But in doing so, they silently demote everyone else who dies. Or who screams for an epidural, or who falls apart at the incubator of a one-pound child.

We do not exist or fail to exist — or birth and "fail" to birth — because some are stamped with a rubber imprint of GOOD or STRONG or WORTHY and some are not.

 

I think the same thing goes for invisible illnesses. We wrap up people in hospital beds with words like fighter and miracle. People with cancer (Just using this as an example) when they go into remission, or even when they don't, they are anointed with the words "Strong" and "Fighter" even "Survivor." They beat the odds, they survived this horrible, awful thing. I'm not saying it's not horrible and awful, because it is. I've lost loved ones to cancer, I know what it can do.
But what about the ones for whom there is no cure? Are they somehow less worthy, less of a fighter, possess less strength?
We're so vocal about diseases like cancer and the people who survive them, and the people who don't. But, I think, in doing this, we do silently demote the ones who won't have a cure, who fall apart at the huge struggle before them in living with an invisible illness.
We do not fail to survive, or fail to fight, just because some are stamped with the sign of "Survivor" and "in remission," and some are not.

My life is measured by the invisible moments. I live my life by these invisible moments. When the diagnosis of an invisible illness comes, it seems there is an urge by society to wrap up this loss and stick it up in the closet, on the top shelf, where it, too, becomes invisible.
I live my life in the invisible moments. I want to be a voice and help make those invisible moments a little more visible.

You are no less of a fighter, or a survivor, with no cure, with no remission, with no awareness. Your fight is not invisble, and neither is your loss.

Soon this space will be too small

I stumbled upon this video by accident tonight.
I'm not sure what it was about this story that made me take notice, but it did.
Soon this space will be too small, soon this life will be too small. Soon the world will be too small to contain, and we will be obliged to start over again.

 

 

Soon this space will be too small ~ Lyrics

Time In Between

In Sunday School this morning, we were talking about hearing God's voice. I'll be honest, at the beginning I almost laughed. I mean, really? I'm supposed to sit around for an hour and listen to people talk about when they heard God's voice and how He made everything ok for them and showed them the right path? Obviously I was getting the wrong idea.
Instead, I realized some pretty important things in that Sunday school class, which I'll try to (briefly) summarize here.
The main thing I was reminded of is "Trust what you know and not what you feel." It's been something I've gone back to a lot in these past 3 years, that even if I don't feel God, He's there. Easier said then done, right?
I was reminded of the time back in July, before I got a diagnosis but had a sense of what was coming. I remember feeling such a peace. Looking back now, I realized that that peace isn't a reflection on the lack of faith I have now (Lack of faith compared to then) but God's presence, Him taking me by the hand and saying, "Ok, Alisha, this is going to be tough, and it's going to hurt like crazy. But this is the right thing, this is where I want you to be. I've got you, I'm not letting go of you." Also, today something was said about in the Bible, God promising never to leave us. I've grown up in a christian home, I've gone to church all my life, I've known that promise, and yet why did it seem so new to me when I heard it today?
One passage I've come back to a lot over the past little while is the one where the Israelites wander around in the desert. I think we, or at least I, tend to focus on the cool stuff Moses did to rescue them from Pharaoh, and when Joshua and everybody walked around the city and the walls fell down. But it's the time in between I didn't really look at before... or at least I didn't until I was stuck in a wilderness of my own.
When the Israelites left Egypt and escaped Pharaoh, I'm pretty sure they thought they were free. God was going to bring them to the promise land sometime in the next little bit, and life was going to be good. Instead they wandered around in the wilderness, for 40 years. They suffered, a lot. One thing that stood out to me is that the Israelites were God's chosen people. And yet they ended up suffering big time. And then, when God finally decides to step in and take them to the promise land, they find out that their enemies live there. I can only imagine what they must be thinking then. I can actually imagine it's pretty close to what I've been thinking this last month.
"Ok, God, I did what you asked. I've wandered around in the desert for years, I've suffered greatly, I've done my time, you can come rescue me now."
What is it that makes us think that, after we've suffered greatly, everything should just be smooth sailing from here on out, that God should just hand us everything on a silver platter.
I was undiagnosed for around 3 years, my own form of walking in the wilderness. Maybe I expected too much when I thought that once the diagnosis came, life would be smooth sailing.
I think I'm a lot like the Israelites in that way, that I've wandered around in the wilderness for long enough, that once I get delivered things shoudl be great.
But things aren't great. The Israelites encountered enemies in their land, and it turns out getting diagnosed isn't just a free ride, it hurts, A LOT.
I keep saying, "Ok, God, where are you? Why haven't you rescued me yet? Why am I still suffering so much?"
And then I hear Him whisper, "I'm right here, waiting until you trust what you know and not what you feel. I've never left you, not when you wandered in the wilderness and not now. I never promised life would be easy, but I promised you would never be alone. Just wait, the best is yet to come."

Crutches

Don't know where this came from... just a little something I've been thinking about the past few days...

I am constructed of crutches.

I drink coffee; watch Grey’s Anatomy more then I should. I write on this blog, on Microsoft word documents on my laptop, in my paisley covered journal, in my notepad, on the back of physics worksheets.

These crutches hold me up. These are second rate crutches, but none the less I clutch at them, grasping the empty space.

My body turns against my mind daily.
My hands, they long to cradle the blind hope, the peace, the relief they had once cradled.
But now they cradle nothing, my gentleness has left.
My hands, they lost the ability to do simple things, to grasp, to release, to touch.
Even in sleep they remain twisted, curled, waiting.
You never know…
The hands were raised to the air, in hope or despair was not quite certain
These crutches are like a scalpel, like the numbing effects of alcohol, like a magnifying glass
 I am constructed of crutches.


I don't know anyone who isn't haunted by something or someone. And whether we try to slice the pain away with a scalpel or shove it in the back of a closet- our efforts usually fail. So the only way we can clear out the cobwebs is to turn a new page or put an old story to rest- finally, finally to rest

One Month

The Unicorn Project

I wrote today, in a novel that I'm writing, the things I wish they would have told me when I left the doctor's office nearly a month ago.
What they didn't tell me is that life would never be the same again. That it would be like having no skin, to watch out for lemons and salty foods and sharp edges
In the first few days, few weeks, now, I realized very quickly there was nothing out there. There was resources on grieving when you've lost your parent, your sibling, your child, your dog, but there was nothing out there specifically for what to do when your world has been turned upside down. There was nothing about, "You will now feel this and this, you are not crazy. You will grieve, and it will hurt, you are still not crazy. You will throw things and cry and scream, and you are still not crazy." You get the idea....
They never told me I would become a wild thing, my nest gone, my sanctuary taken away. They never told me I would be the marker of when seasons passed, when it was another week that had gone by, another day, because I would be the only one who cared so much. They never told me grief would be so isolating and lonely.
Ever since day 1, I knew I wanted to write everything out, what I was feeling, what life was like... I never knew why, I just knew I wanted to capture it all on my blog, in novels, everywhere. Just in this past month, I have realized there is a great amount of silence surrounding grief in regards to a medical diagnosis. There is nothing out there, no sites with people who say, "I've been there too, this isn't all in your head, you can get through this."
I made a decision that I wanted to help break that silence.
If I could go back and tell that undiagnosed girl one thing, it would be to hold on to this moment. Being undiagnosed is hard and it hurts like crazy, but there is that blind hope, the possibility, the potential. If only i had known then...
I think one of the hardest things - besides the actual loss - is that voice inside my head, the one that reminds me I wanted this, I shouldn't be grieving or upset. I think I've said these words over and over in this past month, in emails, written them in my journal, whispered them aloud. "I'm just doing my best." I am just doing my best, and that has to be enough.
My goal is that I'll be able to raise awareness for the pain and grief that comes with being diagnosed. I know I can't be the only one.
As I was writing one night, the words began pouring out of me, and I began to write about this dream, this idea of a project so that newly diagnosed patients could know they're not alone. As I began writing, I began calling this idea my unicorn project.
In Private Practice, Amelia called her baby her unicorn baby, because when she was little she believed unicorns were great and magical and would help lots of people. (Her baby was going to die and she decided to donate his organs, FYI) But I knew that's what I wanted this project to be, something that would be great and help a lot of people, something good that could come out of all this grief I'm experiencing.
Newly diagnosed patients, patients who have been diagnosed forever, anyone out there with a chronic illness, you are not alone.

I wish they sent you home from the doctor's office with a candle. "For some light in your darkness," They would say, "You're not alone."