The Creation of Space

I haven't been writing much lately. More savoring, more collecting. What I have been is personal, the delicate stories of others that I have been so honored to receive, and my own emotional stumbling as I begin to process what this last month has looked like for me. Then there are days when I feel like I need to write down the stories I'm collecting inside of me but they all feel so personal, so precious, so not mine and so mine but still needing the time to be rolled over inside of me and many times I end up sitting in front of a blank screen.
...
I'm sitting at my desk at 1pm, drinking peppermint tea out of my cup that proudly declares, "Good Morning, Gorgeous." It's not morning, but some days are like that. I'm bundled up in a big sweater belonging not to me, under a blanket and in front of the open window.
I'm in the process of reminding myself what matters. It seems selfish really, in a world full of people asking for my attention and homework that demands to be done and a life that demands to be lived to pull back, place my hand over my heart and whisper, "No, this is what matters."
I've been in a state of relative dis-ease health wise lately. Little blue pill bottles lined up on my shelf seem to stand in mockery, showing me again how I failed. I stare at them, willing them to work, willing my body to begin working on it's own and no longer need their assistance.
I read this week that it is foolish for someone to think that one sick body part will not effect all the others, but I kind of did think that. So this one nerve in my body isn't doing it's job, but I have been almost drill sergeant in my commands to my other body parts to do their job, and perhaps work overtime to compensate. Unfortunately that is not the case, and I'm feeling the fatigue in all parts of my body.
I routinely quote movies, and after watching Hotel Transylvania 2 my boyfriend and I regularly quote the line to each other, "I just need to feel loved." Last night, in all seriousness, I used that line.
I feel pulled by so many things, am working so hard to put up this façade and be the strong one and have it all together. Sometimes I don't even realize myself what I'm doing until it all comes crashing down around me and I'm left surrounded by the ruin of it all.
I've been working so hard and pushing myself that I don't acknowledge that I'm exhausted and frustrated and feeling empty.
My friend called last week, and challenged me to take care of myself. The goal was to practice yoga at least once that week, and to text her once I had completed my task.
I texted her yesterday morning, and in my text I included a simple line that I learned this summer, one I didn't realize the importance of until I said it.
Alisha has received medicine.
I have pill bottles lined up on the shelf, doctors working to treat my body, but I've been denying myself the medicine I really need. I slipped into my disguise of everything is alright and I just pushed on and did what needed to be done.
And I agree that there is a time for that.
But there is also a time for acknowledging the heaviness. The stories I've been hearing remind me of things in my own past, and I want to be there and help but I can't unless I take care of myself first. I need to acknowledge the ugly bits of my own story before I can help others with theirs. I am sick, and without acknowledging that ugly illness grief I can't begin healing.
I think there is great power in acknowledging our own stories, and sharing them.

We have to be able to name the chains, and then, I think, we have to be able to confess them. To openly admit, “This, right here, this pulls at me. This controls me. This makes me act a certain way. This distracts me from the Center, from the Core, from seeking first God.”

I'm on this journey of the heart, one that was made clear to me when I started this school year but I still resist so much. It's not easy naming your chains, and the process of becoming free is hard. I didn't know that when I started. But claiming that freedom, and taking back my ground is hard.
Sometimes I feel like I don't deserve to walk there, on that ground of freedom. Sometimes I feel like I'm swinging an ax at a big old tree and barely even making a dent. The negative tapes I hear in my head are too loud, there's too much pain, I can't even begin to tackle these things and have it really make a difference.
Right now, much of this practice is about creating space. I'm creating space for these stories, to tell the truth, to get brave again, to love myself, to be loved by others. Space to fight, to take back my heart and mind and soul and body and voice.
This practice, this daily creation of space, however that looks, is medicine. It's healing, and uncurling the ache and it's beautiful.
Dear you, whoever you are, however you got here, this is exactly where you're supposed to be

In Five Years Time

It takes ten times as long to put yourself back together as it does to fall apart
I know what day it is...
Because at night I forget to sleep.
Every year, like clockwork, more than any other night of the year, on November twenty fourth I lie awake, tossing and turning.
Inside the cells of my body, somewhere, I imagine is the memory of it all. Folded up nice and neat like origami and pressed into the corner. And every year on this day, more than any other day, it is unraveled like strands of DNA that are pulled apart in order to separate.
It was five years ago today...
Even though the immediate danger is gone, the sting still lingers. Absentmindedly I reach for the scar on my neck, the one I relate with confusion.
Because five years later and I still don't understand.
I don't understand how things were fine, until they weren't.
I don't understand everything I went through in those days when I was fighting for my life.
And I don't understand why I'm still here.
...
My dreams are haunted now by the things I've seen, the things I've experienced. I remember very few days when I've awoken feeling like I actually slept, when I haven't been restless or awoken in the night paralyzed with the fear of something I can't remember, or something I can.
I guess that's true of every battle, that when you come out of it it's not without a price.
...
It's a one of a kind feeling to have someone you've never met stand on a stage in front of hundreds of people and say "This song is for a special girl," and then sing a song for you while all those hundreds of people cheer and scream your name.
It feels something like being a rock star.
Thanks to two very amazing bands, I got to know what that felt like.
It's an amazing feeling, one I'm sure I won't soon forget. One that wrapped around me like a blanket and whispered in my ear, "It's ok, now. You're ok. You're here, and this, all that you don't understand, it matters."
It's someone you've never met telling you "I'm in your corner. We're supporting you, every step of the way."
It's stitching the cuts in your soul with guitar strings and piano keys.
...
I don't think you can walk away from something like this unscathed. It changes you. Everything I've been through has changed me. The pain, the death, the unknown, the fear, the people you feel like you should have been able to save, the survivor's guilt, the smells and the sounds. It's changed me. all of it. It's made me stronger, yes, and more compassionate, but its also made it harder to sleep. It's made me freeze in hallways and duck into bathroom stalls to gain composure again because there was this one sound...
It changes the way you see the world, the way you see yourself and your life. It changes everything.
...
I'll tell them how I survive it. I'll tell them that on bad mornings, it feels impossible to take pleasure in anything because I'm afraid it could be taken away. That's when I make a list in my head of every act of goodness I've seen someone do. It's like a game. Repetitive. Even a little tedious. But there are much worse games to play.

The Closet (Living life well)

I sat this morning, cross legged on the floor, and listened to the story of a woman who has cancer.
Hearing her story, it felt like Vietnam and I was a vet. I knew that pain, I'd experienced the wondering when your life is going to end and if this disease is going to kill you and fighting to get better.
I'm in a different place now then I was a year ago. I'm back at school, I'm doing well, I'm stable, I have a life. And yet I'm still not better.
At school and in my now so called normal life very few people know about what I've been through. I don't talk about the medical side of things very much. Partly because I'm in a different place now than I was and partly because it's not relevant to where I am now and partly because for me it's a very personal thing. I'm doing well now but there's still that side of it that is still so raw and fresh.
I'm stable now and able to do so many things but there's not a day when I don't feel something and wonder if I'm getting sick again. There's not a day when I'm not scared that I'm going to lose everything I have right now. I'm walking the line between sick and better. I'm not sick anymore, not like I used to be, but I never will be better.
And this is my life now, finding a way to live and live fully with a chronic illness. Not letting the fear and the what if's rule my life.
Of course I'm still afraid. Of course it's still hard and overwhelming and exhausting and I break down because I don't want to live like this anymore.
I can feel the fatigue in my bones from the trying to be normal and balance my sick life and my normal life and trying to find what works best in terms of me feeling the best and how far I can push things without it getting awful.
I watched a TED talk recently by a woman who was talking about coming out of the closet. She said the closet was anything that was a hard conversation, something you kept hidden.
For me, that life I used to live, that's my closet. It's easier to not talk about it. Easier for me and probably easier for other people. It's easy to pretend that that's not who I am, that being sick isn't still this huge part of who I am. But it is. It has forever changed who I am.
So I think for me part of this new stage of life includes accepting that part of me while making room for the new part of me. I'm still that girl I was a year ago but I'm also someone new. My body is healing, my soul is healing, my heart is healing.
I had this thought that until I got the report that my conditions were cured, there would always be a part of me that was broken. I was living my life in fear of 'what if I get sick again' and I feel like I'm living this double life and it's exhausting. Until I was cured entirely, I believed that part of me was broken. Maybe I still feel like that some days.
But part of this journey is realizing that while I will never be cured, I am well. While I may never be healed, I am healing. Compared to where I was a year ago, I have made amazing progress.
That doesn't mean I'm not afraid. That doesn't mean it's not hard and I'm not exhausted. I still live my life by the clock. I still have to be very in tune with my body all the time. I'm still sick.
But I'm not broken.
I am struggling, but I am whole. I am cracking but it is only because I am growing.
I heard a quote this morning about things in life serving a purpose and then being done. And I feel like that part of my life where I was so sick, it served a purpose. And now I am moving on to this new chapter of my life. I am continually growing and changing. And just because I am shedding layers it doesn't mean I am no longer whole, it just means I am growing new skin, becoming a butterfly instead of a caterpillar.
One of the hardest things for me now has been balancing my 'two lives' and living fully with a chronic illness and not letting fear keep me in one spot. Sometimes I think it would be easier if I was back in that place where I was so sick because I knew what was coming. But that's now where I am right now.
I am here. I am healing. I am growing. I am changing. And while I'm not cured and still am sick and still struggling with that, I'm not broken. I'm not alone. And I'm trying to not fight the current and accept where I am now, surrender to the situation of where I am and not worry, not obsess over what could happen.
Sometimes I think I prefer to stay in my closet and not talk about these hard things because its easier, because it still hurts me to talk about where I was and where I'm headed when so many things are uncertain and while I'm not cured and still struggling every day. But once in a while I think it's necessary to fling open to the door to my closet and talk about where I'm at and where I'm struggling and how my healing journey is going. Because life is not isolation.
So this is my closet, the things I don't talk about. This is learning how to live again with a chronic illness, after you were convinced you were going to die. This is learning to embrace life and trying to live walking that line between sick and normal, between not cured but still well.
I think we all have closets, things we don't talk about. And maybe my closet has sparkly gold walls and maybe your closet has rainbow walls or purple walls or a disco ball, but we all have closets. And I think life wasn't meant to be lived in isolation.
I think part of healing is finding your tribe and finding those things that feed your soul and going with it. And I'm learning. And I'm struggling and I'm embracing and I'm growing and I'm healing and I'm well.

Year One

If you would have told me a year ago that I would be here today, I wouldn't have believed you.
Because a year ago today my world was shaken and I found it just a little bit harder to breathe. I was just a little bit broken.
Because there's no hiding from the truth when it looms before you on a prescription pad, glaring evidence of everything that went wrong.
I fought to get here. I was broken and, at one time or another, during those very dark first few months, I thought my situation was hopeless. I got angry, I cried and screamed and lost it and some days I didn't want to get out of bed.
There was overwhelming guilt, and the frustration and agony that comes with not understanding what is going on inside of your own body and being responsible for your own downfall. Those first few months were agonizing. I spent days and weeks and months trying to define for myself what this new life would look like, because I didn't know how to live anymore. I had to find, and speak, my truth, and I had to learn how to be authentic in a world where everyone was telling me who to be and how to act and what I needed to do.
A year ago today I got the news that changed my life and my world caved in and I fell into the depths of it for a while. Some days I didn't want to live in the dark abyss my life had become.
5 long, trying, exhausting months later, in a church pew, I finally broke. I was buried in an avalanche of guilt and fear and exhaustion and sickness and pain and grief and I basically told God that if He wanted me to live, He better do something because I wasn't going to live like this.
And, obviously, not too long after that, my life began to change.
So I'm sitting here today, in a place I never thought I would be. I'm rising up from the ashes, like a phoenix.
And while some days are still unspeakably hard and my heart is still scarred, I made it through my first year.
On this anniversary day, I do think back to what could have been. It's hard not to think about what your life could have been like or should be like or...
But the what it's don't matter. All they do is make it impossible for me to heal.
So I'm looking back on the past year with gratitude, and maybe a bit of sadness for the girl who took so long to figure out that you get to choose what defines you, and that sometimes terrible things don't break you, but save you.

Brave

"It is not the strength of the body that counts but the strength of the spirit." J.R.R Tolkien

Hanging just above my bed, in a little emerald green bag, are 6 tiny beads. These beads are the first of my collection of bravery beads, 6 beads that represent the tests I had done on that Wednesday and all of the other procedures I've had that haven't been rewarded with a little colored bead.
I used to wonder about these beads. My friend and I were talking a while back and she commented on how she'd seen illnesses become like the Hunger Games, each person trying to out-do the other in terms of how sick they were. There's a ranking, and whether they want to admit it or not at some point almost everyone I know has compared themselves to that person over there or the one right there, figuring out where they fall in the ranking. I wondered if maybe looking at another's string of beads would be like this, another tool used to try and rank yourself and your illness.
This was until I got 6 little beads of my own. At first it was no big deal. I was excited to (finally) have some bravery beads to call my own. And then time passed and every so often I would look up at that little green bag holding my beads and smile.
The secret wasn't in the beads. It wasn't in how many beads I had compared to how many beads I've seen others have.
It was about acknowledging my own bravery.
It was about looking at those beads and knowing I earned every one of them. And it was about looking up at them when I didn't feel strong or brave and hearing the silent words "But you are."
The beads became a reminder for me that even when I don't feel brave, I am.
And I got to thinking. I think that there should be a bead for everything.
I got out of bed this morning, that was brave of me.
I stood up and dusted myself off after falling flat on my face and experiencing failure, that was pretty brave.
I made the choice to be open and honest. I remembered to take my meds. I chose to listen to my body and stay home instead of pushing it. All of those things are incredibly brave.
So why is it that so often instead of looking at those brave tasks and acknowledging them we focus on the negative? The pain endured, the task 'failed', the feeling that, even though it wasn't acted upon, was still there, the negative comment someone said or that was perceived.
I think maybe we all need some beads. To remind us of the good things, the positive things, the incredibly brave things we do.
I don't feel brave. Some days I'm struggling just to hold on. Sometimes it's not about earning a bead or a purple heart, it's just about going where you're needed and doing what needs to be done.
Looking up at my tiny green bag of beads, I smile, knowing that even when I don't feel very brave these beads prove me wrong. They remind me who I am when I forget it.
I am loved.
I am enough.
I am brave.

Bleeding Red

Grief is messy
It's scratching at the surface, under my skin
It's a discomfort that makes me want to pull out my hair
It's anger and tenacity which sometimes gets mistaken for strength
It's fear, and vulnerability
It's desperation
It's neediness
I've described it on a number of occasions as bleeding out
I got sick, and then I got diagnosed, and through out this whole ordeal I've been feeling like I'm bleeding out
It's the little things you notice first
it's the pale skin, and the tired eyes
And then comes the irritability, the anger, the moodiness
It's this ache in my chest, right where my heart is. It's gory and messy. It doesn't hurt really. It's just this small twinge whenever I walk or talk or laugh or breathe
Loneliness, desperation, neediness
These are all symptoms of the bleeding out
Maybe it's a good thing. maybe it means one day I'll have all new blood, healthy blood
But for now, it just hurts. It's sticky and red and it's not neat and pretty
I tend to edit myself a lot, to make things sound poetic and neat. I tend to miss capturing the raw and the real and the honest on paper.
In these bleeding out days, I think it's my fragility that scares me more than my mortality
Death doesn't scare me. Neither do needles, or doctors.
What scares me is this sort of desperation that needs to make everything ok, the neediness I feel, the vulnerability I am forced to succumb to.
I kept waiting for someone to notice me, to pay attention to that pale girl losing blood over there in the corner. But it didn't really happen.
No one offered to tend to my grief, or sit with me, to acknowledge that what happened to me was not ok and awful and world changing.
But the world kept spinning. Life went on.
And so I did it myself. Or I tried to.
I wrote too much and watched too much television and threw all my time and energy into eating the right foods and complained too much and avoided friends because I wasn't brave enough to trust them with my grief. After all, it was all I had left of normalcy.
I was looking for a cure, for some magic to not necessarily take away my conditions but to minimize that gaping hole in my chest it seemed only I could see and make it stop hurting, make me stop feeling like I was losing blood every time I took a breath.
I wrapped myself up tight in un-forgiveness and anger and isolated myself, tied the cocoon I'd made myself up tight and stamped it shut, locking myself inside.
With bare hands, I'm digging through all this gory, messy blood that's coming out of me.
It's not pretty, and it's not fun.
It's exhausting and lonely and it scares the crap out of me and I still don't have all the answers on how to stitch myself back together.
For now it's just duct tape and staples.
But as I look through all this gore and misfortune, as I look at myself in the mirror and see the things other people look past (The pale skin and the tired eyes, the stickiness from the metaphorical blood that keeps coming out of me), I see something else too.
I see life.
It's red and it's sticky and messy but it's a sign I'm still alive
So the blood keeps coming. Soon, I imagine, it will stop pouring out of me and I'll start to build new blood, better blood.
Soon, I imagine, it will stop hurting and aching and the grief will stop feeling so consuming and I'll stop feeling so angry and desperate and lonely and vulnerable. At least, I hope so.
But until then, until that hole in my chest stitches itself closed and the new, better blood comes and it all nudges me back up to live, I'll just sit here, with my pale skin and tired eyes and all those other symptoms of the metaphorical bleeding out that's going on inside of me, because this bleeding out is all I have left of the before.

Stick

I've got the talking stick, what am I supposed to talk about?
The hours are slow. Most of the time I just stare at the ceiling. It hurts to even breathe.
This is the side of chronic illness that isn't so pretty. It's not butterflies and rainbows and positivity or even brutally honest jokes on pinterest laden with dark humor. This is real. This is lying in bed for hours at a time when it hurts too much to get up.
It's just a flare, I tell myself. It will get better, right? One day out being normal and I'm in so much pain it hurts to breathe, or move, or even think sometimes.

Am I supposed to talk about my feelings? I don't know... I'm good. I feel good. My feelings about being sick... I don't really have any feelings about being sick
Some days are worse than others. Some days it feels like the only noise I can make is harsh and fierce and unprecedented. I just sit there and cry. Not because I'm sad. I'm not sad. I'm just... tired.
I'm tired of living in this body that's broken down and tired of people not understanding and tired of having to defend myself.
Some days I look in the mirror and barely recognize the girl I see there. She's so pale, and her hair is matted to her head and she has no makeup on. Her eyes are kind of empty and sad. She looks fragile. She doesn't look like me.
But, then again, I don't know what I look like anymore.

I can show you. You can touch it, if you like.
See this scar here? This is from where I cut my knee open when I was learning to ride a bike.
And this one here? That's from when he broke my heart.
And this one, this one right here, that one is from the IV in my neck I had when I was a baby.
That one is from the surgery
And that one is from the monsters, the little ghouls that lurk in the dark places of my soul. You don't see them, really. You don't see their scars. But I promise you they are there. I promise you sometimes my thoughts can do more damage than the slice of a scalpel.

They told me I'd be getting sick but actually I'm just getting awesome
Considering everything I'm lucky, right?
I have an amazing support system, fabulous doctors, and the chances of me dying from my disease is pretty slim.
I have this little book I keep beside my bed, and I write down things I'm grateful for. I'm at 600 or something like that.
Want to know what the first thing I wrote in it was?
My crazy sexy chronic illness.
Because I'm grateful, I am. I'm proud of who I am and I wouldn't want to change.
Not to brag or anything, but I think being sick has made me awesome. It's who I am. Or maybe it's just showed me who I am.
I'm Alisha
I'm 16
I'm a writer, a dreamer, a daughter, sister, niece, cousin and friend
I'm a child of God
And, oh yeah, I just happen to have a couple of chronic illnesses
and I'm kind of awesome

Sure, I know that my body is trying to eat itself, but what if it isn't? What if it's changing?
I think I might be turning into glass. I think all my bones and all my muscles and all my skin are turning into glass. Hard, smooth and clean. Fragile, yeah, but strong.
I watched this movie once, about a little glass doll. She was broken, her porcelain legs shattered and the edges all jagged. The powerful wizard, he fixed her using some glue.
She turned out to be really brave. She was made of glass, yeah, but she was strong.

You'll think I'm nuts, but I've got the talking stick

http://www.freshink.com.au/stick/

Born this way

I think there's something to be said for suffering. We live in an age where we are so blessed that we can medicate when we need to; headaches, childbirth, dentistry, fevers, surgeries... But as a result, we've grown to expect less suffering in life - and in death. We even attempt to medicate heartbreak. Don't get me wrong - I've downed more than my fair share of painkillers when I've needed them - and I've dealt with the annoyance and frustration of suffering with migraines that hurt more than my natural childbirths. I've given medications or cough candies to my children... and while I understand that pain is not fun - and, yes, I do try to avoid it - or seeing my children in it, some days I wonder if we're trading off something precious when we make it our goal to avoid suffering completely.

1am had come and gone and thanks to some wonderful insomnia, I was still awake. Staring at the ceiling, journaling until my hand started cramping up and I couldn't think straight enough to finish a thought.
I was thinking about suffering.
In chronic illness, like in a lot of things, I think, there are a lot of misunderstandings. It leaves the patient (namely me, yesterday) feeling alone and frustrated. It feels like on top of actually feeling the physical pain, you have to defend it. Everyone seems to need a reason for why things are the way they are or why I'm feeling the way I am.
I'm tired of hearing everyone's opinions on how I should act or how I should treat my illness and my body. I'm tired of people in general acting like they have some sort of right to how I live my life.
And I feel like, in dealing with a chronic illness, people expect you to make yourself smaller. If you're having a flare, you have to have done something wrong. If you can't get out of bed in the morning or can't take a shower it's because you're not trying hard enough.
I think a lot of people expect patients with any kind of illness to be positive and happy all the time and that's really not true. And I feel like people are uncomfortable when they see that side that is real and honest and that really sucks sometimes.
"Stay in your little closet until you find a cure," They'll whisper, "Once you get a cure, then you can inspire people. But right now you're sick and unless you can pretend like that part of you doesn't exist then stay back."

I think, as a society, we're so quick to shrug off suffering. There's a quick fix for everything, even though it's not always that simple. One of the problems with this I see is that no one ever teaches you how to live with that pain or how to embrace who you are now.
Yeah, my life changed dramatically when I got sick. But that's not necessarily a bad thing. But I get treated like it is. I get shoved back into the corner, afraid to be myself because I'll be judged or pitied or whatever. I can't be real because that's wrong. I have to just sit there in my nice little closet and say magic words and believe I can get better and be positive all the time and then, once I get better, then I can come out.
I think more and more people are acting like suffering shouldn't be allowed. If you're sick, you take medicine and get better. If you're depressed, you take pills and make yourself happy again. As a society, I think we're uncomfortable with pain and suffering and anything that's different. There has to be something wrong with you and you have to fix it as soon as possible. And you better not inconvenience anyone with your pain. Basically sit down, shut up and smile.
I think this naturally brings me to a question of, "Do I want to be sick?" Well, obviously not. No human being in their right mind would choose agonizing pain and feeling misunderstood and being judged for something they can't control.
Do I believe I can get better? Yes. I totally believe if He wanted to, God could heal me.
Do I think it will happen in this lifetime? No, I don't. It's a possibility, but I don't believe it will happen, at least not in the way everyone expects it to.
But, here's the thing, and it's something I'm still learning too, there's nothing wrong with who I am right now. Being sick has taught me so many things and I've had so many wonderful opportunities and I'm proud of who I am. I don't ever want to make myself smaller or try to fit inside neat little boxes. This is who I am and I'm not going to stop being myself because it makes someone uncomfortable.
Being sick is a huge part of who I am. It impacts my daily life. And while, yes, it sucks, I wouldn't ever want to change it because it has made me who I am today. And I'm proud of that person.
I'm not looking for a quick fix. I'm not looking to make myself smaller and quieter and more socially acceptable. I don't want to hide those real honest parts of me and what I go through and just gloss over things and pretend everything is fine.
It's ok not to be fine. It's ok to be different. It's ok to fight and struggle and cry.
I am open to healing. I'm working every day on getting better and on feeling better. But right now, this is who I am. For the rest of my life, this will be who I am, regardless of whether or not I get a 'magic cure' or not. Every single day of my life I will fight and struggle and I'll have flares and be sick. It doesn't mean I did something wrong or that I could have prevented it. I can't live my whole life in the what if's.
I'm open to all the possibilities my future will hold. Maybe that does mean the doctors finding a cure for my diseases or maybe it means me having less flares and feeling better or maybe they won't find a cure and I'll spend the rest of my life walking this tight rope between feeling good and feeling like I got hit by a bus. And I'm ok with that.
Are you?
I'm doing this my way. I'm doing this honest and real and I'm not stifling myself to make you comfortable. I'm going to shine, either come with me or get out of my way.

Rare Disease Awareness Day

Today I'm blogging for rare disease awareness day.
It is estimated that 1 in 20 people have some kind of rare disease.
I am 1 in 20
In treating these conditions, mental health is just as important as physical health, and most people struggling with a rare condition end up feeling alone. That's why there's this day: rare disease awareness day, to join hands and take down the borders surrounding rare diseases and let people know that they aren't alone.


I was diagnosed with glycogen storage disease type 1A when I was 4 months old, and with dysautonomia when i was 15. I've gone through many, many tests, hospital stays, doctors appointments, new treatments, therapies... I know what it's like to be alone, to feel hopeless. I've watched friends fight their own battles with rare diseases, and for all of my life I've been fighting my own.
I've been sick for pretty much all my life. I don't know what it's like to be 'normal'. I don't know what it's like to look at myself and not see the G-tube or what it's like to be an average 16 year old. I know this: doctors, hospitals, needles, tests, scans, pain, isolation, surgery, feeling alone and hopeless. I know more about my conditions then most doctors, and my heart rate has been higher then that of patients on medical shows right before they get the paddles. This is my world.
But I also know this: hope, what it means to be a fighter, strength, bravery, and courage. Even in all of this, I am blessed. And because of all of this (not in spite of it) I am standing tall, stronger than ever.


Today I'm not asking for a cure, though I have faith that one will come someday. I'm not asking for a life with less struggle, less pain or less hospitals, doctors, tests...
Today I'm just asking for help in raising awareness for rare diseases like mine.
I'm asking for you to help break through the silence that surrounds rare diseases.
I'm asking so that nobody feels like they have to suffer through these conditions in isolation.
i'm asking so that no other person like me feels like they are alone
I'm asking because alone we are rare, but together we are strong.

grace

“Someone I loved once gave me a box full of darkness. It took me years to understand that this too, was a gift.” ― Mary Oliver

This week was overwhelming. I learned a lot this week, about high school things like chemistry and english, and about other things too, like love, and where my identity is, and grace.
While I got good news from my doctors earlier this week, there's something bittersweet about the whole thing. It's good and it's happy and I'm happy, but it's also scary and sad and full of so much emotion I can't even describe. I am overwhelmed by grace, because I really deserve none of this. I feel like I'm standing on something that is changing. The ground beneath me is shaking, and the world is spinning and it's hard to stay upright. Change is taking place here, something big, I can feel it. I'm excited, but it's hard too.
This week was the salty sweet kind. Days would come and I would end up crying in front of the TV or as I wrote something on my computer or as I sat in a chair after getting up in the morning. It's overwhelming and I can barely take it all in. I considered hibernation, curling up in a cave and sleeping until I figured out what to do with this beautiful mess I call life. I spend one moment falling apart and the rest of the day piecing myself back together. Slowly, piece by piece, I gather up my broken courage and muster up a timid roar. As it turns out I'm not feeling so brave or fearless these days, just sad. It's not a bad kind of sadness either, just a kind of sadness that takes time.
And so this is it. I must learn how to sit with this space in my head and in my soul. I must learn how to respond to this unending grace in the only way I know how - with unending gratitude. I must learn how to stand on my own two feet and find my courage again when everything is shifting around me and I feel so unstable in where I stand in and in who I am.
But I am keeping this list of tiny blessings, my grateful response to this amazing grace that has been showered upon me. And while the good things don't necessarily cancel out the bad, the bad too, I am learning, is a gift.

158. Dr.M
159. Eating at the Olive Garden

162. Stable


169. Heels that click when I walk

172. Overwhelming grace
173. PJ day
174. Laughter
175. Understanding
176. Hot Bubble baths
177. Accomplishment
178. Grey's Anatomy nights
179. space
180. frog socks

183. aha! moments
184. The reminder that I am enough today

186. Bowling
187. Friends
188. A day spent in town with my mama
189. discovery
190. finally catching up on some school'
191. blonde
192. love
193. Kendall's blog post
194. Friday

Stable

Sunday, February 3, 2:22pm: Voices singing along with the radio, calling out, asking for deliverance, proclaiming hope and truth as we enter the valley of the shadow of death one more time...


Monday, February 4, 10:30am; I kind of love my doctor, like a lot.

4:00pm

#retail therapy

 

 

 

Tuesday, February 5, 11:43am: The word stabilized never sounded so good

 

2:05pm: 

 

 

 

8:53pm: I am home. I am stable. Both of my doctors agreed I look good. For the first time in a long time I heard the words, "stable." I am stable. my disease is stable. i once heard this period of stability with a chronic illness as being a stabilized remission. i like that. i am in stabilized remission.

 

 

 

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.”

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.

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.

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.

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.

X   X   X

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.

X   X   X

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.

X   X   X

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.

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.

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.

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.