ImproveCareNow sami_kennedy


The PAC is Ready for ICNLS! Are YOU?

It seems like just yesterday the Spring Learning Session was around the corner! We're just FOURTEEN DAYS away from the 2014 Fall Learning Session - can you believe it!? As usual, the Patient Advisory Council (PAC) is excited, thankful, and busy preparing for the opportunity to contribute to the LS. Once again, the PAC Leadership is gearing up for busy and productive collaborations and presentations, and this time, we get to personally introduce two new PAC Scholars - Isabelle Linguiti and Bianca Siedlaczek!

14 days to go, 3 incredible days in Chicago, 2 amazing new PAC Scholars, and 1 fantastic session. Are you not excited yet!?

PAC1 PAC representatives showing off their gutsy spirit at the Spring 2014 Learning Session!

Just in case you aren't bursting with gutsy energy yet, we wanted to give you a preview of what to expect from our two new Scholars. These young ladies are intelligent, creative, passionate, and spunky. We asked them to tell us (and YOU!) a little bit about themselves and their ideas:

Isabelle, 19, Philadelphia

"I’ve been frustrated with communication between patients and doctors because I feel like they can often turn stressful when we already have enough to deal with. Rather than sitting there with my frustrations, I feel like ImproveCareNow gives me the ability to do something to change that."

Favorite Candy: Dark Chocolate

If I could travel anywhere, I would go to....Iceland! That was my one wish, and I got to go!

In my free time, I like to....get creative and do art projects!

My role model is....my boss at CHOP. She herself has dealt with a lot with her health and is very successful. She wanted to help me succeed and has guided me every step of the way. She is very nice, and giving with her talent and time.

My ideas? "My vision for the Communications Task Force is to use it to create a program that allows patients to have a direct role in educating doctors on helpful listening and communication strategies when working with patients."

IMG_8076.a PAC members working hard at the Fall 2012 Learning Session (Back when we only needed half a table!)

Bianca, 15, Michigan

"I love that ImproveCareNow is more than just a collaborative effort between doctors and nurses; it involves patients, too!"

Favorite Candy: Sour Patch Kids

If I could travel anywhere, I would go to....Italy!

In my free time, I like to....take my dog on walks.

My role model is....my maternal grandpa. He is incredibly strong. He survived World War II before relocating from Italy to the United States and making a living for his family.

My Ideas? "Nurses have a lot of helpful knowledge and experience that would be helpful to PAC. Becoming more collaborative with the nurses of ICN can give the Advocacy taskforce another perspective for projects."


Introducing Jessi! Read her story.

In 1999, at my 2-month check-up my family learned I have Turner Syndrome. Before my 6th birthday I had ear tubes put in; tonsils and adenoids taken out; a tethered spinal cord released; my bladder and kidney tubes reconstructed, and was on daily growth hormone injections. I was regularly followed by an Endocrinologist, Urologist, Nephrologist, Allergist, Cardiologist, and the “team captain” my Pediatrician. Despite all of this, I didn’t look sick. People thought I was vibrant, brilliant, and basically a healthy, cute little Muppet.

 

I am the middle of three girls. My older sister had a prenatal stroke, resulting in right hemiplegia and seizures. My baby sister spent the first month of her life in the NICU but is very healthy now. All that is really just to say that my family has spent a lot of time in hospital waiting rooms.

 

During my 6th grade year, I missed a lot of school with complaints of pain and fatigue.  A normal check-up for my asthma ended with a “by the way, I’ve had a lot of stomach pain and some diarrhea…” This prompted a second look at my weight chart, which showed a drastic loss of 21 lbs. in less than 2 months. Blood tests showed I was severely anemic and Vitamin D deficient. And so, we added Dr. Moyer, my GI from NWPGI, to my list of specialists. A colonoscopy was ordered, then we waited to find out if my official diagnosis would be Crohn’s or ulcerative colitis (UC).

 

My family and I believe that the fact that I was on long term antibiotics for both kidney and ear infections may have contributed to the triggering of my UC. It’s also possible that my frequent doses of steroids to treat my asthma masked, or put off my UC symptoms. By my 13th birthday, I had gone from 113 lbs. to 72 lbs.; from a girl’s size 16 down to an 8/10! Several bad flares led to ER visits, hospital stays, IV’s, several rounds of steroids, and recommendations for Remicade.  For me, with compromised kidneys, and a bicuspid heart valve, (my only real health threats from Turner’s) biologic drugs like Remicade are quite scary and will only be a last resort.

 

Because of my health, my family and I decided on home schooling for 7th grade. My mom and I decided to try the Specific Carbohydrate Diet (SCD) in hopes of staying away from Remicade or other heavy drugs. I thrived doing online school, eating a SCD diet, and we began doing individual food challenge tests to identify foods I really have to avoid. We were able to slowly add back some ground corn, like gluten free corn chips, rice occasionally, and sweet potatoes (my favorite!) into my diet. My health leveled out with these adaptations and we believe the carbs helped metabolize my meds and make them work better. I feel so much better on a gluten and dairy free diet, and feel bad very quickly if I eat “wrong”. Even Portland’s famous Voodoo donuts are no longer tempting because I know what will happen if I eat one. I take my prescribed Azathioprine, Delsacol, and Allopurinol along with VSL-3 Probiotics, Iron, Vitamin D, Fish Oil, and Calcium, and have staved off the need for Remicade so far.

 

One year later, and I was back in full time public middle school. I was in my second play, walked a 5K, only missed 2 days of 8th grade due to UC, and graduated from middle school with the highest honors.

 

Jessi Erickson shares her story about living with Turner Syndrome and ulcerative colitisNow, I will be a sophomore in high school this fall. I pack my modified Paleo lunch to school every day and have a 504 medical plan that gives me clearance to leave class and access to the nearest restrooms whenever I need to go.

 

I am sensitive to stress, still on hormone therapy for Turner’s, and turn into a mean little hulk when weaning off of Prednisone. I have been able to avoid steroids for a long time now by carefully watching what I eat and not missing any meds.

 

In my spare time I write, read, sing, and practice archery, (Twitter, Tumbler, Pinterest, and Facebook too!) I want to be a writer and travel. My first stop will be Ireland! I have a big imagination, an even bigger heart (not in the enlarged, real medical sense) and am willing to help anyone I can, especially other kids who are dealing with IBD.  I want to help raise awareness that Turner’s girls have higher chances of having IBD. This is still news to many endocrinologists who diagnose Turner syndrome.


The Moment, Continued

I've spent two weeks now at Cincinnati Children's Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the "staff" table, I was hit by a quiet wave of shock. It's been over six years since my diagnosis. Over six years.One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I've changed in meaningful and (then) unimaginable ways since my diagnosis.


Hello Andrew

Andrew Kornfeld surfing at ocean beach in San FranciscoIt was the spring of 2007, and I was finishing up my junior year of high school. It had been the hardest year of my life with classes becoming increasingly more difficult and a mysterious illness plaguing my body.  With daily diarrhea, debilitating stomach cramping, anemia, and other severe problems (which I will spare you from) it became clear that something was seriously wrong –– it was more than just the gluten sensitivity and irritable bowel syndrome I was previously diagnosed with.  My illness was at a tipping point and my quality of life had decreased dramatically.

 

I was finally given a colonoscopy and subsequently my mystery was solved: I had moderate to severe Crohn’s colitis.  While I remember feeling relieved to finally have a diagnosis, I was also extremely disappointed that it had taken nearly a year. How much needless suffering had I endured?  Soon after my diagnosis and one failed surgery later, I made the transition to the UCSF pediatric IBD clinic with Dr. Mel Heyman. This may have been the most important decision of my life. Dr. Heyman, along with Laura, the nurse practitioner and a team of other medical professionals, identified the right medications for me, referred me to an exemplary surgeon at UCSF and ordered additional tests. Over the following months, the substantial decrease in my symptoms was nothing short of miraculous. To me it felt like being released from a confining and painful space, into one that was warm and safe.

 

Over the years, I have felt truly empowered by the team at UCSF to take an active role in the treatment of my illness. Some of the modifications I’ve introduced into my care plan have involved: a gluten and dairy free diet, the intake of potent probiotics, and getting plenty of exercise. I am an avid surfer, and feel really energized by the rough waves at Ocean Beach here in San Francisco. I have also recently become interested in how psychological stress may negatively impact patients with IBD, and would like to investigate this further. I am grateful beyond words to have had Dr. Heyman as my pediatrician and to be currently volunteering my time as part of the UCSF IBD team.

 

Andrew Kornfeld Andrew graduated from the University of California, Santa Cruz with majors in Neuroscience and Psychology. He is currently volunteering with the UCSF IBD clinic, and plans to attend medical school starting in the fall of 2015.


Before I Was Diagnosed

On behalf of the Patient Advisory Council, we would like to introduce you to Josh. Josh is going to be sharing some comics/animation as his schedule allows, and we are very excited that he has forwarded us his first comic (and a link to an amazing video he created). Enjoy!

Sami + Jennie


 

Hi! I'm Josh Weisbrod, an animator and comic artist. Currently I'm an MFA candidate in USC's animation program.


Last year I made an animated film about my diagnosis with Crohn's disease (available to view at https://vimeo.com/81004804). But there were an arduous several years leading up to my colonoscopy in Medical Adventure Power!! Here is the story of the horrible Hamburger Helper meals and frequent trips to the bathroom that led me to the first of my (now 7) colonoscopies:

Josh Weisbrod is an animator and comic artist. This is his comic illustrating the time before he was diagnosed with Crohn's disease.


This is not how it ends.

Thumbs up and thumbs down indicating conflicting opinions Image courtesy of Teerapun / FreeDigitalPhotos.net

My daughter asked me to write an honest retrospective on how she wasn't always like how she is now. The changes happened on her terms, in her time, on her own. And, as well as I know her, even I didn't see it coming. I view that as the “even better” part.

 

My daughter was diagnosed with IBD in early 2008. The following is just a snapshot of life then; a story about a high-schooler and her parent experiencing normal life, though ours was further complicated by a chronic illness. Our story might not make anyone's journey any easier, but I hope it will help everyone have a deep-breath moment and think (to quote a favorite song) - this is not how it ends. I hope other parents can relate to these experiences and know they're not alone.

 

Fall 2008: Six months post-diagnosis, I found out we knew someone else with IBD, right in her age group and right at our school. I couldn't wait to tell her when I picked her up at school, but she took the good news with silence. And then she said she knew! She knew? Apparently, he was in one of her classes and mentioned his IBD out loud in class, but she didn't want to "bother him." I eventually (well, maybe very eventually) let the subject drop as I often would during those years. I didn't want to upset her further. Several years later, after high school, the two former classmates connected and shared their experiences. I was very happy, but thought of the knowledge and support we could have gained earlier if not for my child's silence.

 

Note: Whenever I expressed that sentiment (of not upsetting her) out loud to her, it would backfire and she would get extremely upset, saying I was treating her differently now that she had a disease. I couldn't totally deny it, as I knew stress could exacerbate her disease, so I did watch myself. Thus, guilty as charged!

 

Late Winter 2009: She called me from a school bathroom, doubled over in pain. She sounded exhausted and scared, and sheepishly admitted she had been symptomatic for several weeks. She never told me - actually, she outright covered it up, as I asked her often about how she felt with very pointed and specific questions. Now, she sounded desperate. She wanted the blood to stop, as she had a math test the next period and had an A for winter trimester at that point. I gave her a few (extremely reasonable) options, but she rejected them all. She insisted she would get to the test somehow and not say anything to anyone. She hung up on me and was even more upset when I saw her later. Medically, she felt horrible. Academically, she had blown her A. Emotionally, she didn't want to deal with anything, including me questioning the cover-up, its wisdom (or lack thereof), etc.

 

Spring 2011: While completing her senior year internship, a requirement for high school graduation, a new flare. Her internship hours were set, but we needed to schedule a colonoscopy. She did not want to request an accommodation and miss any internship hours. I wasn't allowed to talk to the school either. Thus, the colonoscopy had to be the week after the internship ended - just a few days before graduation. Given her pediatric gastroenterologist's schedule, she did need to agree to have it the day of her internship report. She begrudgingly agreed to do her talk one day early, though two days early (when no other presentations were scheduled) would have been better. When I asked why, it was clear she chose the easy way to avoid discussing details with the school. This meant she had to present and come immediately out to me in the parking lot to start drinking the prep (a few hours late). The colonoscopy occurred as planned, but two nights later, she told me she couldn't even sit still for five minutes without pain – and had been in pain since the procedure! The graduation ceremony was the next morning. After talking to the pediatric gastroenterologist on call, he assured us it was just a difficult colonoscopy with lots of maneuvering; the pain was all muscular-skeletal. Graduation went smoothly, but her choices made that month so much more difficult.

 

Early Summer 2011: The colonoscopy showed nearly the best results we could have hoped for and her medication plan was fine, with one addition, enemas. I was so relieved. She was so upset. Back in the spring, her college had been wonderful when learning of her IBD and even offered a private room right in the freshman dorm. She had refused; she would not alter her freshman experience based on her disease - even now, with the enemas changing her routine up. I suggested she be open with her roommate, but she presented the same freshman experience argument. With downing thirteen pills a day and storing large boxes of enemas in a tiny dorm room, she was going to need to explain something to her roommate, but she just rolled her eyes at the thought. Thus, her nightly bedtime routine at home became a "dress rehearsal" of a strange technique - doing an enema in the bathroom and holding her butt together while shuffling back into bed (note: not an exact enactment of what was to come, as she couldn't practice ladder climbing - yes, she was going to elevate her dorm bed and yes, bed height was also part of the freshman experience that could not be altered. I had given up debating this freshman experience thing by this point!). Ultimately, I am not sure if she ever mentioned her IBD to her freshman roommate. My mom-sense did lead me to casually mention it to her roommate's mom, though.

 

Winter 2012: On the phone from college, she told me she wanted to volunteer as a counselor at Camp Oasis. I was shocked. I was not against the idea; quite the contrary, just stunned. I had begged her to attend as a camper for three years. Not once could I finish the sentence before she shut me down. I could go on about similar refusals regarding IBD learning conferences, IBD peer support events, etc. Although she did happily participate in CCFA walks and other fundraisers, I was still amazed at her insistence on volunteering at Oasis! She applied and was accepted as a counselor. She has been loving it every summer since and admits she wished she had experienced it as a camper. (I can't help but think those four words kids hate to hear from their parents - I. Told. You. So.)


Zip Line MisadventureMy daughter asked me to write this for all the parents and their kids facing the same types of challenges we did. It's not easy - but where you are now won't be where you end up - just like Sami and me.

With much Love to and Admiration for ICN, C3N, and Jennie and Sami, Always,

Sami’s Mom


Who is an advocate?

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.


listening, magic, and a little paint

At the last ImproveCareNow learning session, a mentor gave me a piece of advice I've carried with me since: "As you go forward, no matter how much training you have or how brilliant you are, never assume you know best. Always listen."

 

ACH

 

On Saturday mornings, I work as a child life volunteer at Arkansas Children's Hospital, where I follow a variation of the same rule. I play an important role, but before I knock on each and every door, I tell myself that I come last. I am there to listen and try to make make magic happen; no matter how much experience I think I have, the kid is the expert. When I enter a room on the unit with my bag and my clipboard, I am a stranger. By time I leave, I'd like to be a friend - a goal not always attainable, but always set. I try to listen more than I talk. I pick up on the little things. Would she like glitter paint more than regular paint? Princess coloring book or puppies? Should I drop a sheet of stickers in my bag before I come back?

 

Saturday morning, I met Tyler (name changed) who didn't look like he was having the best day. He was eight and hanging out with his video games, but I've become pretty good at distinguishing bad day faces from good day faces - and this was a bad day. I crouched down by his bed and did a run-down of "my collection" in the playroom. With Tyler, his face lit up when I suggested paint, and so I knew what to suggest next. These are the moments where that goal of making a special connection becomes possible; with the right words and the right timing, I can make a hospital room glow. It's a kind of magic all its own, but one that anyone who works in a children's hospital should recognize.

 

"Hey Ty, I have an idea." He looked up. "I can bring you some paper to paint." He nodded. "But do you like to paint other things too?" He looked at me funny. "Well, sometimes, I let kids I really like paint my face." This is technically a lie - only one other kid has painted my face in the hospital (his hilarious doctor's idea actually) - but Ty didn't need to know that.

 

Ever seen a YouTube video where a kid is asked if they'd like to leave for Disney World in about five minutes as a total surprise? He said yes with the same enthusiasm. To be honest, I didn't expect quite such a dramatic response.

 

His lunch came right at that moment, so I excused myself to finish up my rounds - and encouraged him to eat up. I'd be back soon, and he had work to do then.

 

Thirty minutes - and several delivered board games and art supplies - later, I was back in Ty's room. "Ready, bud?"

 

I'm about to show you what happened next - but the best part, and what I can't adequately show you in a photo or even really describe, was how much of a kick he got out of it. He had this mischievous laugh that led one of the nurses in the hallway to peek her head in to see what was going on. When he finished his artistry, he sent me onto the catwalk - or out to the unit hallway, if you'd prefer to call it that - to show me off to the nurses. Finally, I was allowed to take a look in the mirror. (Thanks to my PAC co-chair, fellow blogger, and texting bestie Jennie David for the photo comparison!)

 

Sami-face-paintI asked Ty if I could hire him to do my make-up for Winter Formal, but sadly, his schedule has no openings right now.

 

I get to do this every week. I get so excited about it, which always leads to questions about why I volunteer with sick kids. How could I want to start my weekend in a children's hospital. Isn't it sad. Statements, not questions. I do not deny the sadness, but I have had the privilege of seeing so much happiness. I might come last, but the joy I have at the end of each shift makes me feel like I am first. My work with ImproveCareNow is remarkably similar. You know my name and you hear my stories, but I want you to know that I'm here not just for me, but for every patient - your patient. I represent, but I'm last. I know it's a sentiment that Jennie and I share, and the code by which we work.

 

I've stopped trying to guess what's ahead for me. My life is changing by the month these days. But I hope that, even as I grow and evolve into new roles, I'll always know how to spark the magic that can get the room to glow. I want to be brilliant as a physician, but more than that, I want "my kids" to feel brilliant.


Healthier Together

It's no secret on this blog that Jennie and I both adore Taylor Swift, but I perhaps admire her liner notes more than any particular lyric. One in particular inspired me to share my story, even when I felt like I had nothing worth sharing:



"There is a time for silence. There is a time for waiting your turn. But if you know how you feel, and you so clearly know what you need to say, you'll know it. I don't think you should wait. I think you should speak now."

 

Jennie and I have a secret theory that T Swizzle is an ImproveCareNow supporter all the way. "We Are Never Ever Getting Back Together" is just too easily about a colectomy. Alas, we are currently without any proof to back up our theory, but like any of her songs, it's quite obvious Taylor wrote the above quote with inflammatory bowel disease and ImproveCareNow in mind.

 

Taylor was writing, of course, about the Healthier Together campaign. She - and we - want you to speak now. Every family connected to an inflammatory bowel disease patient has a story to share - and we want need to hear and share those stories.

 

Networks like ImproveCareNow are leading the way to ensuring innovation, quality, safety, and value for every patient, every time. We're all about engaged care, empowering patients, families, care teams, and researchers to work together and share information seamlessly to drive improvements in the care of kids and teens who deserve a fantastic quality of life and a cure. It's not just your doctors and nurses who are the catalysts for change. It's all of us - little and big. When we work together, kids with IBD get better, faster.

 

Healthier Together is a movement to support ImproveCareNow and other collaborative health care networks.Healthier Together is a movement to support ImproveCareNow through the collection of 1,000 statements of support by September 15, 2013. What can you do? If you are a patient with IBD, a family member or friend of a patient with IBD, a clinician, a researcher, Taylor Swift, really ANYONE, you can (and should!):




    1. Visit and share www.healthiertogether.org.

 

    1. Write a letter (or even just a sentence or two)! Why do you believe it's important for patients, parents, care teams, and researchers to work together in a learning health system like ImproveCareNow? Short, long, poetic, epic - anything goes!

 

    1. Create a video! Let us hear your story. Make it a collaborative effort and interview your care team. Gush about your dreams for IBD care and how learning health systems like ImproveCareNow can help make them a reality.

 

    1. Draw a picture! Too young to write? Are you an artist at heart? Not sure how to put your thoughts in words? Show us your vision for collaborative care and why it matters for inflammatory bowel disease patients and families.

 

    1. Take a photo! Hold up a sign, show us a memory, or let your smile speak for itself.



All letters and media can be submitted at www.healthiertogether.org. Photos can also be tagged with the hashtag #healthier2gether on Instagram (follow us @healthier2gether, too!)

 

Jennie and I share our stories all the time, but it's not enough. We need the little stories, the big stories, the crazy stories, the boring stories - because no story is ever unimportant. Write it or draw it or speak it into a video camera or post it on Instagram, but whatever you do, I don't think you should wait.

 

Bonus points to anyone who can get Taylor Swift (@taylorswift13) to submit a post to the Healthier Together campaign.

 

S+J


because these things will change.

Sami_scope

 

Hey.

 

Breathe. I know you want to scream right now, because it hurts so bad. I'm sorry.

 

I know you struggled to sit through that presentation. I know you didn't leave because you were afraid you'd get in trouble. You didn't want to be embarrassed. You wouldn't know what to say. You have diarrhea and it's really bloody, and I know that scares you. I know there's no way to say that easily, so you keep quiet. Some days, it's just blood. I know you wish you could talk about it. One day, you will.

 

I know you're scared. Scared that next time, you won't make it. Scared that the line outside the stall will start to get impatient. Scared that everyone will notice it's you giving off that smell. I know you wish you had more hands, so you could plug your nose, grip the rail, and hold your aching belly at the same time. I know you worry that one day, the pain won't pass, and you won't be able to wipe and stand up and just leave. You don't know what you'll do then. You're scared to look down, afraid of what you'll see. It's getting worse. The doctor said it would get better. I know it doesn't make a lot of sense to you now. You're eating only the most basic foods. It's a bagel every day for lunch, maybe white rice and a banana for dinner. You're staying hydrated before you run. That was supposed to make it all better. No matter what you eat, the pain makes you moan and cry and scream, but you know you get through it every time. You're going to get a break soon. It will be okay.

 

15167_173271543634_6732132_n

 

You're going to face something even worse than that pain, too. Bad doubt, worse than the worst of your pain. It will hurt you more than anything. Trust yourself. Your pain is real, and you are not weak. You are loud and smart and spunky. Be that girl, even through the pain. I know you think letting people do nice things for you will make you not-a-grown-up, but let them. It's not baby-ish to need a hug or do a silly craft. Keep that in mind...say, two weeks from now. That was a hint. Hey. Really. You're being more of a grown-up than you know right now, even right within that stall.

 

I'm sorry. I'm sorry that the field trip you've been anticipating for months had to go this way. I'm sorry that you couldn't eat at lunch. I'm sorry that when you get on that school bus to go home, you're going to sit alone and lay your head against the window, clutching your stomach, wincing with every bump in the road, hoping you see the school before it's too late. I'm sorry that when you go to track practice, you're going to be the last runner to cross that finish line again. I'm sorry that you're going to have to keep running all the way inside to the field house bathroom. I'm sorry that you're going to have to get back in a car to go home. And come back tomorrow to go through the pain and confusion and loneliness again. I'm sorry that you haven't had the normal freshman year you so badly wanted.

 

14

 

I know you're not wondering why you, but you are wondering why, and I am sorry that even I can't tell you that. No one can. But, one day, you are going to dream of finding the answers to questions you don't even know to ask yet. You are going to read books and hear stories about cells and pathways in your body that sound too incredible to be real. But, they are. And you will love those stories so much that you will want to learn every detail of those stories and write your own, too. You will have dreams you cannot even fathom yet. Dreams bigger than the stories and bigger than the pain.

 

I know it bothers you that I'm apologizing. I know if you were feeling better, you'd probably even be angry that I'm being so unclear about everything. This is our story, and you have to live it out to become me. Believe me, you'll like who you become. I'm sorry that you have to feel this pain, and that it's worthy of a letter, but know this: one day, you will speak about this pain, and the crowd will stand up and applaud, and it will be one of the happiest moments of your young life.

 

Hey. Don't look down. Just this one time. You know what's there. Look up. You don't know what's ahead yet or even what your problem is, but one day, you're going to be part of the solution. I know.


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