Beautiful - a 5 minute Friday guest post

She is amazing. She is beautiful and intelligent and witty and on the bad days she sends me John Green videos. She is one of the most wonderful people I've ever had the privilege of meeting.
This girl is so amazing I would read her grocery lists (On occasion I have!) so I knew anything she would write would be fantastic, so when I asked her to write for 5 minutes straight about being a writer, and when she gave me this amazing little jewel of work, I was overjoyed. I was even more excited when she agreed to let me post her 5 minute, unedited blurb on my blog.
And Sami - thank you for letting me have the privilege of sharing your words with the world. You are amazing, and I am so honored I have the privilege of calling you my friend


"I first became acutely aware of my body image in eighth grade, right before graduation. Lori Anne wrote in my yearbook, "you are the skinniest girl I have ever met," and I knew she was serious - but I also thought her crazy.
I had not thought of myself as skinny since hitting puberty. I danced and had thighs, and if you dance and have things, you are not skinny, at least not when you are young and competitive. I felt lost between accepting a complement and denying its reality and confused about what was reality. Around then, I also had these fancy portraits taken in a brown dress, and my parents couldn't believe I looked so old. I couldn't wait to not look so young. I loved it. I remember looking at the huge portrait when it was hung, and thinking, I look like an adult.
 And I felt like it too, then. If you look like an age, you feel that age, if only for a few moments. I guess it's the same with beauty. If you look like Beauty, you know, with a capital B, like the societal type, then you feel like it - but when you're just you, and the subtler lowercase beauty, it's not so easy or automatic to feel."

I refuse to be silent

When my friend Isabelle asked me to write a letter to myself for her blog, I was honored. Of course, I told her, I'd come up with something.
I spent days trying to think of what to write. I wanted it to be amazing, I wanted it to showcase the light on the other side of darkness, and if I'm being totally honest I didn't want it to be too honest, too reflective on my own weakness.
There is light in the darkness, but there are also days when the darkness is so overwhelming, so overpowering it's impossible to remember there is light beyond this, much less catch a glimpse of it every now and then.
The post I ended up writing I wrote in 15 minutes. I wrote it after a day when I was exhausted, when I felt like I was done trying to get it right and I had nothing left to give.
I don't like to admit to those days. It worries people and I feel like it makes me seem weak and people look at me differently when I confess that my life is pretty messy at times, a mosaic made up of shattered pieces that I keep trying to arrange into something beautiful.
The letter I wrote to myself was on one of those days. It was on a day when I got into my car after hours spent with people and broke down while Springsteen was on the radio. I was tired, and frustrated, and everything hurt and I didn't want to take any more.
So I wrote this letter to remind myself that bad days come, and you just have to feel them out. But good days come too. Days when people end up surprising you, and your heart is so full of love it might just burst. Days for dancing and wearing red lipstick. Days when there is sunshine out there and you can feel the light penetrating your being.
I refuse to be silent about the things that matter, about who I am, even the messy, hard parts.
I refuse to be silent






"Jacob, where do you find the strength to carry on in life?"


"Life is often heavy only because we attempt to carry it," said Jacob. "But I do find a strength in the ashes."


"In the ashes?" asked Mr. Gold.


"Yes," said Jacob, with a confirmation that seemed to have traveled a great distance. "You see, Mr. Gold, each of us is alone. Each of us is in the great darkness of our ignorance. And, each of us is on a journey. In the process of our journey, we must bend to build a fire for light, and warmth, and food. But when our fingers tear at the ground, hoping to find the coals of another's fire, what we often find is the ashes.


And, in those ashes, which will not give us light or warmth, there may be sadness, but there is also testimony. Because these ashes tell is that somebody else has been in the night, somebody else has bent to build a fire, and somebody else has carried on. And that can be enough, sometimes."

All You Need Is Love

She set her head on the desk and leaned her cheek against the smooth surface and closed her eyes, for a brief minute falling into a world where nothing hurt.

 The legs of his chair banged against the floor as he moved to sit as close to her as the plastic surfaces they sat on would allow, wrapping his arms around her waist and resting his cheek against her shoulder.

And this moment was like a drug to her, like an intravenous drip running into her veins restoring her faith in humanity and kindness and beauty and the world slowly and all at once. And his arms around her were like a shelter, a fortress that when the winds raged outside of her windows and the rain beat against the panes and the world was carrying on as if it was in the middle of a hurricane, kept her safe and dry. And inside his arms the world made sense and sometimes when the world is hard all it takes to give you that push to keep going is knowing that someone is on your side.

It’s a pair of arms to go home to after a long day and it’s the hand to hold as you walk through the hallways of a place where everyone is trying to convince you to be someone other than yourself. And it’s those eyes that return you to your center, even when you feel as though you’ve lost your island and you’re lost in this storm with the raging winds and the rain. It’s having a person, someone who believes in you when you don’t quite believe in yourself and someone who reminds you of all the reasons why you’re worth loving when you seem to have forgotten them.

And it’s the harbor and it’s coming home and to her, he was all of that. And as he wrapped his arms around her and ran his fingers through her hair and kissed her pale skin, he was reminding her of the million and one ways she deserved to be loved.

And sometimes the world hits hard and the raging storm becomes a hurricane, a force of nature like no other, and it’s all anyone can do to stay standing. And sometimes the harbor cracks under the pressure and it just becomes two children lost in a storm. And so she cradles his head in her hands, pouring back into him the strength he infused into her. She moves her hands in small, meticulous circles over his ink black hair and her lips are moving but I can’t make out the sound and all of it appears to be like some kind of secret promise. Because when the world hits you hard and knocks you down and it’s all you can do to get out of bed in the morning and still believe in the good and the beautiful, you find safety in company. And where his heart was jaded and broken fit perfectly with the scars and jagged edges on her own and as his strength bore into her, her strength poured into him and it was this dance, a tender game of give and take.

And she sat up and looked him in the eye and she lifted her fingers and placed them on his chest, in the very spot his heart is. And his heartbeat pounded against her hand and in these life giving beats she was reminded of how beautiful life is and of the fragility and tenderness of being tragically human and how sometimes all it takes to believe in yourself is having another person believe in you.

Like two children in a storm they huddled together, creating their own force of nature, their own shelter from the incoming hurricane. With broken pieces and jagged edges and the jaded fragments of themselves that didn’t belong, a safe harbor was built.
With his heartbeat under her fingers and his arms around her waist, she found the courage within her to calm even the deadliest sea. She found a thread called beauty and a string called hope and a piece of ribbon labeled love and she used them to stitch up whatever had been inside of her that had broken.

And I guess they had been right when they said all you need is love.


Sometimes you have moments when you lose yourself. Among piles of homework and crowded halls and the lack of sleep and the infection that is taking its toll, you become someone you didn't know you could be a few months ago. Instead of thriving you're merely surviving and life becomes a gauntlet run of sorts, an obstacle course, something just to get through.
I woke up this morning not wanting to wake up. I hit the snooze button a few too many times. My stomach was in knots as I sat in my first class, untying the knot that had been made of the apron strings.
And in these moments, when life becomes just another task to check off your to-do list, you can forget about the beauty of humanity and the beauty in the world and all that has the potential to stir something within you and make you scream "Yes! I felt that. And I am more than just a collection of cells and tissues, I am a person."
I was sitting in the library, looking at a text book I wasn't reading, when I saw them. Two people sitting a few yards away from me. And inside of me they sparked a story.
They reminded me of the most beautiful thing, something I had forgotten as I paced in the trenches and was tossed around by a life that feels like you're juggling too many plates and sooner or later something is going to come crashing down.
They reminded me of the beauty in being tragically human, in being vulnerable and being fragile. And I felt something stir inside of me, something that reminded me that I, too, am a part of this human race and within me is the potential for that kind of beauty and that kind of love.
And life is hard and exhausting but it is also beautiful, if you look.
And I want to look. I want to see people that make me stare, unable to look away, and that make me fall in love with the world all over again, that stir within me stories and feelings that remind me that yes, I am human, and yes, this is what it means to be alive.
Sometimes, in the middle of an ordinary day when life seems un-ordinarily  heavy, people come around who spark within you a fire that you can use to warm yourself and regain strength. They remind you that life is beautiful, and they make you fall so in love with the world and these people and this moment and this feeling that you can't even breathe.

So, to the couple in the library, thank you. Thank you for reminding me of the beauty that still exists, and for lighting a fire of strength and passion inside of me when I felt like I was slowly losing (myself, this battle, my hope, passion, strength and love).
Sometimes, if you open your eyes and look up, people will surprise you. There will be beauty, enough to remind you that you are human and of the reason that you do this day in and day out.
Become a beauty seeker and see love, and be love, and let it penetrate your being and then reflect it back out into the world.
Because sometimes all you really need is love.

I was asked to do a guest post for my friend Crystal's new blog with the topic "Keep Walking." It was published today, and you can check that out here

Making Room

Recently, I was asked to write a guest post for the blog of author Nancy Rue. Every time I am asked to do a guest post, I am honored, and this time was no exception. The topic I was asked to write on was forgiveness.
When I got the email asking me to write this piece, I was in a place where I needed to forgive myself. Not wanting to deal with the topic of forgiveness at all (and come face to face with my need for it) I put off the post for nearly a week. But the idea of forgiveness kept popping up. Someone would write a status about it on Facebook. On Pinterest there would be a quote about forgiveness. In a newsletter I subscribe to, in other blogs I read. I couldn't seem to escape the idea of forgiveness.
So I sat down with my computer one night, determined to write about forgiveness and get this thing off my plate. I'd dealt with forgiveness many times before, and I would just write about one of those experiences.
About halfway through my writing, I noticed a shift. I don't know if it was noticeable to anyone reading it, but I felt it.
I'm human. I am tragically flawed. I make mistakes, some I'd rather not own up to, wishing I could just sweep them under the rug and move on. And, being human, when I make some of those mistakes I beat myself up over them for days. As I was writing this, I began to observe the very tender balance between forgiveness and forgetting.
I read an article by one of my inspirations, Jennifer Pastiloff, the other day about forgetting. She raised the idea that we don't forget anything. Our memories, everything that has happened to us, is stored somewhere, unable to be forgotten, even if our mind is not consciously aware. In having this storage room of sorts, Jen says that we can let go of all the things we are holding on to that don't belong to us or no longer serve us, knowing that they are kept safe in this storage room and are not gone. This way there is more room to hold those good things in your arms, the love and the laughter and the sunny Saturday's at the lake.
This was in the forefront of my mind as I was writing the article about forgiveness. As I came face to face with my need to forgive myself.
So I made a mistake. a big one. If I hold on to this mistake, keeping it in my arms, pressed tight against my ribcage, I am taking up room I could use for holding close the people I love, or the memories I don't want to forget. Part of my fear is related to the quote that says if we all let go of our problems and saw what everyone else has we'd scoop up our own. I have this fear of letting go of my problems and letting people see them. I am learning that people won't always react like I think they will, and that really my problems aren't problems that are totally new to the human race. When I forgive myself, I can let go of everything that isn't mine that I've been holding onto- the pain and the blame and the hurt and the anger and the negative self talk. Those things don't serve me anyway.
Letting go doesn't mean forgetting. It doesn't mean that it doesn't matter or that there's nothing wrong with what happened. It means I'm making more room for things that really matter, like the people I love and the memories I can wrap around myself like a blanket on a chilly day.
I'm not forgetting. I'm not throwing my heart and all it holds on the ground and stomping, letting the pieces fall where they will. It's all still there. It still belongs to me, the memories, the good and the bad. I'm just making room.

If you feel like reading the article I wrote on forgiveness, you can check it out here

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.

http://www.diseaseonmysleeve.org/post/41889858584/forafriend

Just Normal

This is that story I was telling you about that my friend Sami wrote. She gave me permission to share it. She definatly has a way with words, and she's such an amazing person. I related with so much of what she wrote here, and it's so true. So this is what Sami wrote: hope you enjoy!
For me, the hardest part about having a chronic illness has not been the days at the hospital. Not the blood draws or the needles or the blood - they've never scared me. Even the things that do scare me - the discussions about the future, the last moments before the anesthesia kicks in - they don't top the list either. The hardest part is having to be Just Normal.

A lot of you know I've spent the last eight months of life living at a college twenty-two hours away from home. I'm lucky. I can do this because I'm in remission. I could lose this at any point. A few of my friends here know what I have, who I really am. But to most, I'm Just Normal.

I always wanted to be Just Normal. I really did. The night before I was admitted to the hospital for my first set of scopes and diagnosed with Inflammatory Bowel Disease, I thought I had cancer. My parents did too, but none of us admitted it. When I woke up in recovery after my scopes the next day and found out I had IBD, I was relieved. I wasn't at risk of dying. I thought that meant I could be Just Normal.

I didn't attend Camp Oasis because that would be accepting the fact that I was different. I waited three years to join Starbright World because to become a part of this community would mean "giving in" to my illness too. I had to hit rock bottom and realize I wasn't becoming the strong, confident leader of my dreams before I could change. In late 2010, that happened. In early 2011, I did something about it. I came here and met some of the most wonderful people I've ever met who've given me confidence and a change to use my experiences as motivation to do good. I've never been happier since I've made the decision to accept the fact that I am different, that I will always have a monster inside me that wants to destroy me. And even though I will need doctors and medications to control that monster for the rest of my life, I will do everything I can to not let that monster bring me down. Even when it lands me in a hospital bed, I will not become a whiner or pity myself. I have plenty of flaws, but my disease is not one of them.

College has been one of the most rewarding experiences of my life. But sometimes I feel like I'm living a kind of Hannah Montana double life. I have the group of friends I always wanted. I have the remission I wanted. I have the support I wanted, the support that's enabling me to do some of the incredible things I've spent the last four years dreaming up. In many ways and to many people, I am Just Normal. And then there are the few who know the truth: I am not normal. That beneath the Just Normal exterior, there is a monster that could steal away my remission at any time. A part of me that knows words - that has to know words - like Mean Corpuscular Volume and Fistula and Ileocecal Junction. There are so many days I walk around campus as my happy-go-lucky self - and I realize no one around me knows who Spencer is, or would understand what it's like to watch my friends suffer. I would give away days, even weeks and months, of my remission to my friends just so I wouldn't have to watch them go through the constant pain they go through. Why am I the only person I know in remission? Why am I the lucky one? I should be happy, I know. But it makes me sad. It makes me feel guilty. My stories are about college, while yours are about a mishap with your feeding tube, and we have the same disease. There's something not right here. Sometimes, I feel really alone - and that is why I need SBW the most when I am in remission, to remind me that I am not alone.

The point is I've learned to segregate my life into two halves - a la Hannah Montana. Normal college kid who goes to parties and watches Netflix and complains about Calculus test. And sick kid who has to find friends to drive her to her blood tests at the local hospital and who takes her iPhone to the bathroom just in case there's blood in the bowl. They come together rarely - when I'm trying to raise awareness (a few of you know about super huge awesome project I'm working on right now!) or when someone is right there willing to listen who is really interested and really cares about me. But usually, I'm Collegiate Just Normal Sami and, separately, The-Girl-With-The-IBD that I was in high school.

So today my friend Lizzie freaks out because my friend Lindsey's boyfriend called her a naughty word. And other ridiculous girl drama ensues. Now, I'e had my fair share of girl drama. I can't say I always keep out of it - sometimes it's even my fault. But today was not a day I could cope with it. While all this drama was breaking out with me in the middle, I found out that my friend's Lupus spread to her kidneys. She'll have to spend this summer on chemo. I thought about another friend of mine who's struggling to find any answers, and can barely make it through the day. I Skyped with another friend who's not doing so hot at the moment either. On one hand, I don't believe it would be right for me to expect my college friends to see life from my perspective. I've experienced things I hope they never experience. They are Just Normal, at least from the chronic illness perspective, so it would be wrong for me to become angry at them because they don't understand how petty their problems are in the scheme of things. I freak about unimportant things too. We all do, even when we're in the worst situations. But sometimes I wish my Just Normal friends - and the Just Normal side of myself - could take the time sometimes to consider how thankful we should be for everything we've got going for us in our lives. I know that some of my friends with chronic illnesses won't have the same opportunities I've had and am having and will have - and that hurts me so badly inside. I can't donate away my remission, so all I can do is appreciate it the very best I can. It would be wrong of me to expect my Just Normal friends - and even the Just Normal side of me - to think "I have two working kidneys, so none of my other problems really matter!" every time we're upset about something silly. But sometimes I wish I could give them a piece of my mind and tell them what it means to REALLY struggle. To be fighting not over who said what, but to LIVE.

All in all, it's been a rough day, and I'm waiting for all the conflict to blow through. I'm very lucky to have one really wonderful friend here who comes as close as possible to understanding. I'm going to go eat chocolate now.

Audrey Hepburn

This poem was written by my friend Sami. I read this, and absolutely fell in love. It was so relatable and true I almost started to cry. She agreed to let me post this to share with everybody.

There are so many
things I want to tell you
like how
on the couch yesterday
evening I
was sitting on your
lap with your hand
on my shoulder and I
so
wanted to bend down
and kiss your cheek
like how you kissed my
forehead
when you left for the
night.
But I didn’t.
Or how that kiss made
me
(with my frizzy short hair
in a page
boy cut) feel like a
girl,
a proper pretty girl,
like the Audrey
Hepburn
poster on your wall.
I should said all of
this.
But I didn’t.
I didn’t say how I
love
your curved sarcastic
smile or
your black pea coat
with
the buttons that have
anchors
or the nerd jokes you
blurt out
from time to time, so
spontaneous I know you
couldn’t
have planned them out.
And I love
the way you make
smiles with sprinkles
and M&M’s on your
ice cream
cones and nerdfighter
jokes.
I love how you rename
the
folders on my computer
and
search for the things
you
know don’t exist just
because
you want to see me
blush. I
do, but I’m blushing
not because of
what you say, but
because of
how you look at me.
And I
should have told you
all this
last night
when you stood up
from the couch
and planted a kiss on
my forehead.
But I didn’t.
Because I thought of
all the other things I want to tell you
like how I am a bomb
that
will one day pop and
let off smoke,
and I am not whole but
broken
and bruised. You do
not know I
run three times a week
in the mornings
although I feel
nauseous or that I
walk to the pharmacy
once a month
to exchange a thirty
dollar bill for
pills and the enemas
you don’t know
I need to use every
other night. And
you have not seen me
on steroids
with fat cheeks and
face flushed,
ashamed of how I look
and too
tired to go outside.
You have not
seen my eyes grow
tired from
becoming a drugged
insomniac.
You could not love me
then because
you keep Audrey
Hepburn on
your wall. When I am
sick,
I am not Audrey Hepburn.
I am just me then, but
a little
wider in the face and
skinnier in
the hips and breasts.
And sometimes
I will be in the
hospital. Then,
I will not need
someone who can
make faces on ice
cream cones, but
someone who can hold
my hand and
let me cry and tell me
that
I will come out of
there as alive
as when I was carried
in (because
I could not walk). And
you will not
want to hold me then
because you
will be disgusted by
the ticking noise of
the little bomb inside
my intestines
that ticks on and on.
You do not
know what I am at risk
for. Cancers.
Liver disease. Kidney
disease. Things
that could kill me if
my immune system
doesn’t get around to
finishing the task
first. And one day, I
might choose or
be forced to lose my
colon, and I will
need someone to kiss
my forehead not
when I have pounds of
make-up on
my face, but as I lie
listening to my
heartbeats on a
surgical gurney.
I will need someone
brave
who will see me as a
person when
I am little more than
an IV and
a prescription pad.
Because beneath
the medical apparatus
that may one
day cover my skin, I
am a person.
A beautiful person
with a beautiful soul.
You too are beautiful.
But you are meant for
someone different. You
are destined for an
Audrey Hepburn, someone
whose beauty
will always radiate on
the outside. I believe
that beauty must first
and foremost come
from the inside. I am
not
Audrey Hepburn, but
maybe
I am just as beautiful