Wednesday, January 30, 2013

I have this friend

I have this friend and while she would tell you she isn't anything extraordinary I think everything about her is extraordinary. She's one of the most amazing people I have ever met. She is a kindred spirit, one of my best friends, and an amazing girl I have the honor of knowing.
She is fierce and passionate. She shares my favorite book. She makes me laugh, but sometimes we cry together too. I didn't know if I would ever find a friendship like this, or if a friendship like this even existed, and I am so blessed to have found it. And I am continually blessed by this amazing girl.
She makes me want to see myself the way she sees me. She makes me want to be better. She inspires me to keep fighting, to keep living. She makes me want to believe in myself the way that she believes in me.
And she wrote this thing for me, about me, and when I first read it it took my breath away.

Monday, January 28, 2013

We tell people they are “strong” when we are uncomfortable with their pain and would prefer that they shut up and not bother us with it. To say “but you are strong” is telling someone “I don’t think you should feel that way,” and it’s not a compliment. I don’t think that strength means being invulnerable, or pretending that you are. The belief that silence and stoicism are inherently good qualities is how you end up dressed up like a bat punching criminals in an alley – it’s not a good road to emotional health.
Be sad. Be angry. Let your heart break – in the diner, on someone’s futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapist’s office, on the bus – Wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, “I’m sorry, I can’t listen to you today, my heart is broken. Will you sit with me a while and I’ll tell you about it?“

Say, “I can’t take care of you today, but you can take care of me, and maybe tomorrow I will take care of you, and we can trade off like that for a while, okay?”

Say, “I love you, and I love that you think I’m strong, but I don’t feel like being strong today. I feel like being angry and crazy and sad. Can we go to the movies or just sit here quietly or take a walk or talk about it or not talk about it?“

Your friends may get scared when you do this. If you, the “strong” one can break, what does that say about them? That’s why they push back at you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don’t have to solve that pain, they just have to bear witness to it. Maybe they don’t know how – a lot of people don’t know what to do in the face of other people’s pain. They want to fix everything, and if they can’t fix it they feel inadequate. As the “strong” one you can help them out with this by saying “You don’t have to fix it. You don’t have to do anything. Just be with me, and listen, and love me, and I’ll love you back. That’s all I need – to know that you love me, even when I’m sad and scared and don’t know what to do next.”

Saturday, January 26, 2013

Soul Food

For months my life was in shambles. I felt like a caged animal, filled with so much emotion I didn't know how to express. I was filled with ancient, primal sounds coming from some place deep within me. I felt trapped, lost, angry and desperate.
I had just been diagnosed. and instead of being happy and relieved (though I was those things too) I was upset. It was another thing I didn't know how to handle. It was the loss of something so precious. It was evidence of where I'd failed. I felt like i was participating in a horror show. I didn't understand. I felt seering loss, a sense of complete brokenness.

It was January 1 when things began to change for me. The first day of a new year usually means making resolutions i know i'll never keep, being sentimental about the year gone by yet excited for a clean slate in the new year. This year is turning out to be different. I feel better then I have in a very long time. I'm finding my 'muchness' again. I'm coming out of the darkness and walking towards the light. I'm happy, and I'm excited for my future.
Not long into January, I discovered a fabulous lady called Kris Carr. She had stablized her chronic stage 4 cancer and her lifestyle was intriguing to someone like me, someone living in desperation with the knowledge that something had to change or I might not make it through this and be ok.
So I started juicing, and eating more veggies, and working to diminish inflammation in my body. And it started working. I started feeling better, my energy improved, the amount of pain I was having lessened, and I just felt better, happy, like I was glowing.

Today was the first time i had an ionic footbath. I was a little nervous, but mostly excited as I stepped into that small room. I submerged my feet into the tub of warm water, and almost instantly toxins began to come out of the pores in my feet and into the water.
I listened to the sounds of the people and things around me. I felt the warm water on my feet, felt it as more warm water was poured in to the bath, as a cup of electrolyte water was placed in front of me. This was the sound of care, the feeling of someone watching over me.
I rolled up the pant legs of my jeans, watching as toxins were released from my body. Toxins released from every part of me.
We made conversation as I soaked my feet, the water changing from golden amber to mud brown with bubbles.
"Drink plenty of water in the next 24 hours," they reminded me.
Care was being given.

This was my first time recieving an ionic footbath. Yesterday, as I walked through the aisles of the health food store, I saw a poster. Holistic health is something i find intriguing, and so when I saw the sign I was ready to give it a try. Emotionally speaking, when I discovered holistic health and this kind of medicine that wasn't just about symptoms, I was crawling on my hands and knees. I was exhausted from trying to reign in my emotions, faituged from fighting an uphill battle with grief. Natural medicine, for me, wasn't about possibly improving my symptoms and feeling better. It was about pure survival. It was knowing that if I didn't do something I was going to get smaller and smaller until I was barely a speck in a microscope.
On December 31, it was the worst day and the best day. It was the day I knew I couldn't fight anymore. I was desperate. I was tired of fighting, tired of pretending to be ok, tired of living in this place of constant grief. Was it my own fault that I was feeling like this? Was I not thankful enough? Maybe, like some people seemed to think, if I was just happier I wouldn't be feeling like I just lost one of the most precious things in my world, like death had just come and settled in to my body.
I say it was also my best day because after curling up on the couch and watching a movie and crying and wondering what i was going to do now, I watched the sunset out of the big window in our family room. It was the most beautiful sunset, with colors of pink and golden and purple and wisps of blue. It was the day I began googling and accidentally stumbled upon an article about some celebrity who had tried a natural diet. I was intrigued, and read more, and more.
So I decided to try. Things couldn't get any worse, and I had nothing to lose. So in a matter of days I began juicing, and eating more veggies, then slowly cutting back on my animal products. The holistic approach to my health wasn't just about my physical symptoms, though. I began feeling lighter, feeling better, which gave me the energy to finally sift through all those emotions inside of me I'd kept buried for so long. Finally i had a license to feel all of these things.
So, 3 times a day, I have felt there, standing over my juicer as veggies spun out of control, over the stove as ingredients mixed together, most of the time to create something that would nourish my body and also, in turn, my soul. As I scour the internet, looking up new holistic health plans, I let myself dream of a new future for myself.
When I say this new life style helped me, I'm not just saying it improved my disease related symptoms (though it did.)  I was in a coma and I got diagnosed and that's traumatic and awful and it's not ok for me. Nothing can make being sick not suck for me - not even the love of my amazing friends or talking with other chronic illness survivors or writing or hot bubble baths, though these things are all crucial in my healing journey. Nothing will ever make what I've gone through ok or not traumatic or not suck. but holistic health does something for me. It's something I can control. It gives me the ability to deal with my emotions, or to lose myself and not think while I cook or find new delicious recipes or remedies.
For so long I've worked so hard to take care of everyone else. But this is me taking care of me. it's feeding not only my body but my soul. it gives me control in a life where things are always needed from me.

I had my first ionic footbath today, and it was a release. as toxins poured out of my feet, something inside of me released. Care was being provided. While my life still spins chaotically and things are still needed from me always, natural medicine gives me stability. It's restored my faith in myself.
Today, as I rinsed off my feet, wiping all the brown sludge from my ankles, the lady who was doing my footbath said to me, "I don't say this to a lot of people but I have a feeling you're going to change the world."
I smile at the thought. Maybe I am. But right now I am changing my world. And, for now, that is more than enough.

Thursday, January 24, 2013

If I could...

If I could, I would go back in time. I would endure the sickness, the worry, the desperation. I would go through all the scans, the needles, the doctors visits, the tests. I would be given hope, then false hope, then no hope at all.
I would struggle through hospital stays, and days when I didn't want to get out of bed. I would do it all again just so I could live in this moment.
If I could go back in time, I would start at the beginning and marvel at every little thing, everything that caused me pain and agony, and all those amazingly good times too.
I would drink up every moment that I was alive, breathing, hopeful.
I would record every single happy moment, and even some of the not so happy ones. I would take pictures of the journey. I would be brave.
I would find the courage to speak, find the courage to share my truth. I would laugh more, cry less, and celebrate every moment I am living. I would make art, and share it. I would be honest and real. I wouldn't worry about the small things. I would be around people who inspire me and stop trying so hard to make people happy while risking my own happiness.
If I could, I would go back to where I stood, 12 years old, facing a mountain. I would take her hand and tell her to worry less and laugh more, to be alive in every moment, to never stop dreaming, to love with her heart wide open and to believe in herself above all else.
I don't know if I would have believed myself then, but I know now, and I guess it's never too late to start.
And so, I sit here thinking about all the things I would have done differently, but the thing is I would go through all of those heart breaking moments again if it meant I would end up here, surrounded by friends who make me deleriously happy, inspired, feeling happy and grateful, feeling like a survivor.
I would go through all of that again if it meant i would end up here.
Countless times, life chose me. I should have died, but I didn't. And so, I will choose life.

Friday, January 18, 2013

The Lucky One

Then the Lord told him, "Make a replica of a poisonous snake and attach it to a pole. All who are bitten will live if they simply look at it." So Moses made a snake out of bronze and attached it to a pole. Then anyone who was bitten by a snake could look at the bronze snake and be healed.
Numbers 21: 8-9

I look down at the charm on my wrist - a snake wrapped around a pole. It is to tell the paramedics - if something was wrong - what to do. It is a way of telling the world something is wrong with me before I even open my mouth. I immediately notice if someone else is wearing one. I feel naked without the bracelet around my wrist. It bangs against my other bracelet when I move. It is my theme music, my battle cry.
Someone should tell Jesus. I mean, it's gotta be dangerous storing children with cancer in your heart.

The first time I read that verse, I thought of this quote. I also thought of a conversation I had with my friend. I was curious as to why the symbol of a snake around a pole adorned the bracelet that has become like my battle cry. According to Google it has something to do with Greek Mythology. But I can't help but wonder if someone read that verse as the symbol was engraved into medical history.
I have been bitten. Like Job I have been robbed of something precious by a snake. It seems like the devil and demons are all waiting for me to curse God, to actually give up for real. I have been bitten.
I wear this bracelet not as jewelry but as protection. It is a snake around a pole: healing for those who have been bitten.
It's just a bracelet, one I used to hate because it told my secrets. Now, though, it is a wink from God, a reminder to look and I will be healed, a reminder that I serve a God who is mighty to save, and who is able to perform a miracle in my life. A cure may never come, but healing is promised. The symbol that brands me also sets me free, echoing God's promise to heal and to save. It is a symbol given to adorn the sick. It is a promise, a reminder, a hope. It screams I am different. It screams I am chosen.
A symbol I used to hate carrying around becomes a wink from God - a wink that adorns the wrists of the sick.
So maybe, just maybe, that makes me the lucky one?
God gave some of us chronic illnesses because we're His favorites and He wants us home sooner.

P.S My last blog post Numbers and Stories was recently posted on the Disease On My Sleeve Website. Stop by and check it out, along with some other amazing posts by other amazingly talented people.

Wednesday, January 16, 2013

Numbers and Stories

The story doesn't end here

It's been 128 days since I got diagnosed. I thought of just saying how long it's been in months (4 months and 6 days) or guessing (just over 4 months) but I've decided I've earned every single one of those 128 days. I'm still 128 days later, and sitting there on September 11, 2012, I didn't know if I would be. I couldn't imagine myself 128 days out, or even 18 days out.
Life stopped for a while, for me. It stopped and now that it's slowly beginning to start again I'm left to look around and wonder what happened during those days. If I'm being honest, I'm looking over the past 1513 days (November 25, 2008) and wondering what happened.
Last night I kept asking myself the question, "What are you scared of?" over and over again. I came up with some pretty interesting things, but one of the things that struck me was this, "I'm scared I haven't made any good choices since November 23, 2008. I'm scared I did it all wrong and I ruined everything."
I keep track of days. Days since the diagnosis, days since the coma, days until finals, until the new semester begins, until break, until the weekend, until doctors appointments. I keep track of numbers: my locker combination, numbers that fit seamlessly into physics equations, the number of books I'll be reading for english next semester, the numbers on the clock that tell me how much time i have left before i have to get up or make an effort at doing some school or walk to class or babysit.
128 days. 1513 days. and I've earned every single one of them.
I never imagined it making it here, to 128 days - and 1513 days - out. If you'd ask me in September if i ever would have made it here I wouldn't know. I couldn't imagine myself here, couldn't imagine making it this far. If you would have told me after I woke up from the coma that I would be here now, that I would have fought like crazy to get diagnosed and then that that diagnosis would have almost broke me, I wouldn't have believed you.
The days fall together in a blur, and I wonder about everything I did during those 1513 days.
But the story doesn't end here. The story doesn't end at 1513 days or 128 days.
Everything is lying blank before me, and just because one chapter is closing doesn't mean the story is finished. The story doesn't end here. There will be new choices - better ones, hopefully - and new chances at love and relationships. There will be good days, and bad days, days that I walk through with ease and days that I fight through every single moment. And each day I will have earned another number, another day that I'm still here, still living, still writing the story that is my life. Because my story doesn't end here, and neither do the days of being a survivor.
It's been 1513 days, and 128 days, and I'm still here. I'm still fighting, and I have earned every single one of those days. And the story doesn't end here. Because there are still so many days waiting to be filled with heartbreaking things and wonderful things that I can't even imagine yet.
The story doesn't end here. With each day that passes I am walking farther away from the battlefield I lived in for so long, and walking towards the sunrise, with the promise of a new adventure lurking on the horizon.

Monday, January 14, 2013

Green Juice

I'm sitting here, drinking my cup of green juice (It's not as bad as it sounds, trust me!)
One week ago I started drinking this juice every morning, as well as eating a more alkaline, plant based diet.
It's been pretty amazing. I have energy, I'm happy (My family jokingly calls my green juice my happy juice) and I just feel better.
I got a new juicer yesterday and I'm loving it!
I'm just excited about finding out about this stuff and feeling better and feeling good again. When you're sick for a long time it feels weird to actually have energy and be able to do stuff again.
Being in control of what I eat has helped me a lot too, I think. Being able to throw some veggies in a juicer or mix up a salad has helped me feel in control which is something you don't get a whole lot of when you're sick and your whole life is determined by what the doctor's need from you and what your body needs from you.
It's amazing, and I feel amazing, and I'm happy and excited and feeling great.

This is the green juice recipe I made this morning (Minus the pear)

Friday, January 11, 2013

The Love List

I've spent almost the whole week trying to figure out how to write this post.
Basically, it goes a little something like this...
I love my life!
I am really happy right now. I have energy again (Yay!) and I feel better and I'm just excited and alive and it's pretty awesome.
So what changed?
I started taking back control and being creative. Whenever I don't have one of these two things - whenever I feel out of control or when I lack creativity - I go into a pretty messy place. I easily get overwhelmed and I start to freak out.
I started eating better (I'm trying to go for a more alkaline diet, starting with the green juice I make and drink in the morning that, around here, we jokingly call my happy juice)  and, at the beginning of January, I started this writing program called 750 words where I write 750 words a day.
I've just been having a really good week.

Here's a few of the things I'm loving this week:
* My parents. After talking to and seeing the lives of some other patients with chronic illness and their families, it makes me really grateful for mine. I think everyone has complaints about what their parents could have done differently, but all things considered my parents handled my being sick pretty well, and I am so grateful for that.
* I love my green juice.
* I love it that the semester is almost over! Don't like studying for finals, but I'm so excited for a new semester and a new start.
* I love this video: What it's like being chronically ill, incase you ever wondered
* And I love my life!

Sunday, January 6, 2013

Running the Gauntlet

I thought I knew what I was going to write. For days now I thought I knew what I was going to write. Turns out I have no clue. I haven't been writing much, besides my daily 750 words.
I write about zombie's and a pink dress and onions.
Today I wrote about Africa and plastic surgery and Kate.

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I'm still here, muddling along. I've had a decent Christmas vacation. Some weeks were worse then others. Last week was pretty bad, this week is pretty decent. I guess that's how it works.
I watched Les Mis over break, and started - and finished - The Perks of Being a Wallflower. I drank tea and baked some muffins and took pictures and drank tea and watched Grey's Anatomy.

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On Thursday it will have been 4 months since I got diagnosed. Is that crazy? Is that only crazy to me? It feels like not that long ago. It feels like it wasn't that long ago that it was November 2008 and I just woke up from a coma.
I feel like I should be able to deal with this better. I should be happy and grateful and living life. And I am happy and grateful and living life. But I'm also sad and scared and grieving. I never expected to be sad and scared and grieving. I was supposed to have this all figured out. I'm supposed to know what's going on. But I don't.
It's not what I thought it would be. Getting diagnosed wasn't just getting answers. It was death and birth all rolled into one. It was being forced to stop running and try to come to terms with everything I've been hiding from since November 2008. It's whispering into the dark, "Hey, something happened to me and it was awful and tragic and it's not ok," Even though during the day I find myself constantly saying, "I'm ok."
Getting diagnosed wasn't just life, a birth, it was death too. And I'm still learning how to grieve that.
I'm getting there, though. I'm trying.

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On good days I can see peace, a clearing, hope. I would go through all this pain all over again for the honor of bearing witness to these chronic illnesses that have changed my life so much, my horror and my wonder combined.