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Fragile But Unbreakable

Fragile But Unbreakable

I used to get really upset whenever someone would refer to me as “fragile” after I had yet another injury or surgery. The word itself, in relation to a person, means “not strong or sturdy; delicate and vulnerable” (Oxford Dictionary).  For so many years, I’ve wanted to nothing to do with the word “fragile.” However, the new slogan for EDS Awareness Month “Fragile But Unbreakable” has completely changed my relationship with this word.

After living with Ehlers-Danlos Syndrome for 23 years, I’ve finally started to accept that my body is more fragile than the average human. I’ve dislocated my shoulder holding a door open for a stranger, dislocated my knee while coloring as a child or just rolling over in bed, I’ve developed stress fractures in my spine from just the stress of gravity, and have survived countless other injuries caused from simple tasks.  My intestines become inflamed if I eat the wrong foods, many of my joints are developing early onset degeneration, and I honestly never know if I’ll wake up with a new injury or pain.  So yeah, that sounds like a fragile body.

However, I am not my body.  Yes, my body belongs to me, but I refuse to be defined by the genetic mutations that have weakened the collagen holding my body together.  My body will always be unstable and fragile, but my limitations do not determine who I am. My soul and spirit will continue to remain strong and tough, despite the fragile shell they live in.

Yes, my body is fragile. But I am unbreakable.

Strength of Words

Strength of Words

This post is a little different than most of what I write. It’s a collection of other people’s words that have given me comfort, made me think or left me in awe last year.  I’ve loved reading since I first learned the skill, and often collect quotes and lessons from my favorite books. Tomorrow, April 28th, I am participating in the 11th annual Dewey’s 24-Hour Readathon and using the event to continue raising money for the Muscular Dystrophy Association for my half-marathon and marathon goals in 2018. (If you’d like to pledge a donation to support my readathon, you can do so at or a general donation can be made at

Since I’ll be spending as much time as I can tomorrow absorbed in other people’s stories and worlds, I thought it’d be fitting share my favorite lessons and quotes from a few of my favorite books that got me through the roller coaster that was 2017.  You can follow my readathon progress on my Instagram @owningthestory. Enjoy!

Lexicon by Max Berry

“We all want to be found.”

Phantom Limbs by Paula Garner

“Damaged doesn’t necessarily mean broken.”

“We can’t turn back time. But we can try to see things how they were, how they are. And we can try to learn from them, to make the tomorrows better.”

When Breath Becomes Air by Paul Kalanithi

Life isn’t about avoiding the suffering.

“Don’t you think saying goodbye to your child will make death more painful?” Wouldn’t it be great if it did?”

[This sentence leaves me speechless everytime I read it. What an incredible take on what the emotional pain of death might mean.]

12 Days of Dash and Lily by Rachel Cohn

“Even the hard years have some reason for celebration.”

Storied Life of A.J. Fikry by Gabrielle Zevin

“Who are these people who think a book comes with a guarantee that they will like it?”

“No, the real difficulty of living alone is that no one cares if you are upset.”

“A question I’ve thought about a great deal is why it is so much easier to write about the things we dislike/hate/acknowledge to be flawed than the things we love.”

“The words you can’t find, you borrow.”
“We read to know we’re not alone. We read because we are alone. We read and we are not alone.”

“Why is any one book different from any other book? They are different, A.J. decides, because they are. We have to look inside many. We have to believe. We agree to be disappointed sometimes so that we can be exhilarated every now and again.”

“Someday, you may think of marrying. Pick someone who thinks you’re the only person in the room.”

“We are not quite novels.
We are not quite short stories.
In the end, we are collected works.”

God Help the Child by Toni Morrison

“No matter how hard we try to ignore it, the mind always knows truth and wants clarity.”

“What you do to children matters. And they might never forget.”

It’s Okay to Laugh by Nora McInerny

“Marry someone patient. Let’s face it, you’re not always a walk in the park. And when you throw a fit because you can’t find your keys and he says did you check your purse? and you say of course I checked my purse, do you think I’m a moron?? and then you really check your purse, and there are your keys, you want a person who will just shake his head and smile, and call you an idiot under his breath. But lovingly.”

All the Bright Places by Jennifer Niven

“We do not remember days, we remember moments.”

“Sorry wastes time. You have to live your life like you’ll never be sorry. It’s easier just to do the right thing from the start so there’s nothing to apologize for.”

The Beginning of Everything by Robyn Schneider

“Sometimes I think that everyone has a tragedy waiting for them, that the people buying milk in their pajamas or picking their noses at stoplights could be only moments away from disaster. That everyone’s life, no matter how unremarkable, has a moment when it will become extraordinary – a single encounter after which everything that really matters will happen.”

A Monster Calls by Patrick Ness

“You do not write your life with words…You write it with actions. What you think is not important. It is only important what you do.”

“Don’t think you haven’t lived long enough to have a story to tell.”

Forward by Abby Wambach

“Strength is a full gamut. You’ve got to be strong from top to bottom, but you also have to raise your hand and say, “I’m feeling weak right now. I need some help.” There is true strength in being able to ask for help.”

“At a young age I learned that you own labels by defying them, and defy them by owning them. I know that the final word on me will be one that I choose.”

This is Where I Leave You by Jonathan Tropper

“You have to look at what you have right in front of you, at what it could be, and stop measuring it against what you’ve lost. I know this to be wise and true, just as I know that pretty much no one can do it.”

“Even under the best of circumstances, there’s just something so damn tragic about growing up.”

“It’s true. Somewhere inside us we are all the ages we have ever been. We’re the 3 year old who got bit by the dog. We’re the 6 year old our mother lost track of at the mall. We’re the 10 year old who get tickled till we wet our pants. We’re the 13 year old shy kid with zits. We’re the 16 year old no one asked to the prom, and so on. We walk around in the bodies of adults until someone presses the right button and summons up one of those kids.”

Option B: Facing Adversity, Building Resilience and Finding Joy by Sheryl Sandberg

“Option A is not available. so let’s just kick the shit out of Option B.”

“Life is never perfect. We all live some form of Option B.”

““grounded hope”—the understanding that if you take action you can make things better.”

Yes Please by Amy Poehler

“The only way we will survive is by being kind. The only way we can get by in this world is through the help we receive from others. No one can do it alone, no matter how great the machines are.”

“Saying “yes” doesn’t mean I don’t know how to say no, and saying “please” doesn’t mean I am waiting for permission.”

“how a person treats their waitress is a great indication of their character.”

“Your ability to navigate and tolerate change and its painful uncomfortableness directly correlates to your happiness and general well-being. See what I just did there? I saved you thousands of dollars on self-help books. If you can surf your life rather than plant your feet, you will be happier.”

“Emotions are like passing storms, and you have to remind yourself that it won’t rain forever. You just have to sit down and watch it pour outside and then peek your head out when it looks dry.”

“Sticking up for ourselves in the same way we would one of our friends is a hard but satisfying thing to do. Sometimes it works.”

If At Birth You Don’t Succeed by Zach Anner

“Laughing at somebody is just another way of dismissing them, but laughing with somebody is a bridge to understanding.”

Counting By 7s by Holly Goldberg Sloan

“And endings are always the beginnings of something else.”

“maybe that happens when you’ve been through a lot. all of your edges are worn off, like sea glass. either that, or you shatter.”

“It has been my experience that rewarding and heartbreaking often go hand in hand.”

Happy Reading!

Daring Greatly

Daring Greatly

I’ve been at a loss for words to write about my experience with the Chicago Marathon. I’ve written, re-written, and spewed incoherent sentences onto many pages. Nothing felt right. I felt like a failure for not reaching the finish line and I couldn’t find an honest way to write this. I wanted to be okay with the experience and inspire many with a profound piece. I wanted to talk about all the awesome that happened during the race, but forget about the pain and struggles. I wanted my story to be different.

In the midst of this, I turned to my favorite book and inspiration for my blog, Rising Strong, by Brene Brown. In this I was reminded,

“Our job is not to deny the story, but to defy the ending – to rise strong, recognize our story, and rumble with the truth until we get to a place where we think, Yes. This is what happened. This is my truth. And I will choose how the story ends.” – Brene Brown

So friends, I’ve rumbled with the truth of my story and here it is. Stick with me, it’s a long one.

There is something special about race mornings. As we walked to the start, the streets of Chicago were flooded with runners – yet it was quiet. Everyone flowed together in the pre-dawn darkness, each thinking about the adventure that was about to unfold. Start lines buzz with the quiet energy of untold stories.

As I waited in the Athletes with Disabilities (AWD) start corral, the excitement of the moment began to hit. The streets were huge, but for that first mile there were only 50 or so AWDs on the course. I’ll never forget the feeling of running over the first bridges almost alone, to random strangers cheering us on.

I can’t explain how, but every cheer I heard felt genuine and true. I smiled and thanked the spectators and in those brief moments of eye contact, I felt a connection. I believed their messages of motivation and belief in my abilities. My cheeks were sore from smiling before I even hit mile 3. The spectators in Chicago were incredible sources of distraction for me, especially as things got tough.

Approaching mile 5, my Achilles started cramping, causing my foot and toes to curl under. The one thing I hadn’t accounted for in Chicago were the uneven streets. I stuck to the outer edges of the roads for my safety, which was where the pavement was most uneven. My Achilles was so overworked from trying to stabilize my foot that it was seizing up.  Not a super great sign for only 5 miles in, but a quick stop into an aid station helped ease the pain enough to keep my foot straight.

I saw my friends just after this, and my energy was renewed briefly from the endorphin rush of their cheers.  After this though, things got rough. Fast. My spine was feeling compressed and radiated pain to the surrounding muscles. My right shoulder muscles I had been struggling with hurt on an entirely new level. The slightest tilt of my head sent a shock of pain down my neck and shoulder. It felt like my entire body was buzzing and on fire simultaneously.

I dug deep and gritted it out along Lake Shore Drive, simultaneously fighting back tears and smiling to thank the supporters and fellow runners that continued to call my name and cheer me on. This distracted from the agony that was slowly consuming my thoughts.

My coach met me at the aid station at mile 8 and walked with me for the next two miles. Throughout these miles I kept thinking of my honored heroes, the reasons I was out there. I was ready to fight, just like they do, to get as far as I could. I’m really not sure how I got through those miles, but I do know my coach’s positive energy and comforting talks made me believe I could do it. It could not have been easy for her to walk alongside me and watch as I struggled, helpless against the pain. Yet, she kept my mind clear, told me to dig deeper than I’ve ever gone before and reminded me it was okay to cry as I fought back tears.  Together, we made it to mile 10.

I spent the next 30 minutes at the aid station, laying on a cot while icing my spine. My team manager arranged with one of my friends to get my second crutch to me, since it was clear I was not going to make it to mile 14 to pick it up like we had planned. I got the all clear from the medical staff, who trusted I knew my body, but also reminded me that I needed to put myself first if things got bad again.

By the time my second SmartCrutch arrived I was feeling fairly rejuvenated. We gathered my things and finally ventured back onto the course. A bittersweet moment of victory for me. My team manager stayed on the course with me and walked alongside me until we reached mile 12, where we picked up more MDA staff members, volunteers and an honored hero to join us on the course. It was a special moment to have so many people walking with me, supporting me every step of the way.

I stayed comfortable enough to grind out the next 4 miles at a moderate snails pace, with my “village” of supporters helping me with water stops and taking in fuel. My family also joined us on the sparsely populated course for a few miles and my village grew.  Around mile 15, the familiar pain had started to creep its way back in. My legs were painfully tingling and my back was radiating constant pain. Many breaks on the curbs of the now empty streets of Chicago were needed to give my body a break from the war gravity was waging with my joints.

I headed separate ways from my MDA team around mile 16, and continued on with just two of my friends at my side. From here on out every step was a battle. The pain was consuming and constant, but lessened when I sat down – which indicated to me I had not reached my “danger zone”.  However, the breaks I took were starting to help less and less. The moment I would stand again, the tingling and radiating pain would come back. My crutches helped relieve some of this pressure, but nothing I could do completely alleviated it.

I took my coaches advice and started to dig deeper and deeper than I ever have before. Before that day I had never gone further than 15 miles in training, and the furthest I had continued pressing on with this type of pain was 3 miles. By mile 20, I was now 5 miles further than I ever had gone and had been gritting it out through the pain for 14 miles and almost 8 hours. Relentless forward progress. I still had visions of finishing.

Until mile 21. I’m not sure how it started, but the pain intensified and I felt trapped. I walked that last mile fighting back tears every single step. I was irritable and had a rumbling of what I knew might be on my horizon. Knowing I was struggling, my friend suggested we stop to sit on the next curb for a break.

The tears I had been fighting back the last mile flowed freely as I broke down on that final curb. I was tired of fighting the pain for so many hours. My body felt electrified with constant waves of pain and my spine felt crumpled. My friends sat on either side me while I cried, and we talked about what needed to happen next. My head and heart wanted so badly to reach that finish line. Yet, the thought of getting up off that curb to take another step terrified me. I couldn’t make up my mind. Press on, or call it a day.

Still crying, I called my coach. We talked about the situation and she gave advice out of a place of love and belief in my strength. I think I knew what I had to do after that phone call, but I wasn’t ready to admit it yet. Still crying, I realized the only voice I wanted to hear next was of my best friend, who lives in Boston. I called her and she answered right away. She could not have been expecting me to call in the state that I was in, but she went all in, listened compassionately and gave me solutions to both sides of the decision.

About this same time a Chicago Marathon staff had stopped on the road in front of us. My friends explained my situation and they offered to call medical transport. All of a sudden my decision needed to be made. I cried harder, and my best friend gently told me the words I needed to hear. Finally, I had made the toughest decision of my life. To stop my marathon at mile 22, after over 8 hours of effort.

After hanging up the phone, I sat on this random curb on a bridge in Chicago, surrounded close by my friends and cried for the loss of my goal to finish the race. My dream had ended. I felt weak and uncourageous.  My supporters had helped me raise over $5,700 for the Muscular Dystrophy Association, and I wanted to show them that they put their belief in the right person. But I was tired. Tired of fighting the pain, tired of a body that never cooperates, tired of my mind being stronger than my body, just plain tired of it all.  My heart was raw with a vulnerability I had never shown so many people.

“Vulnerability sounds like truth and feels like courage. Truth and courage aren’t always comfortable, but they’re never weakness.” – Brene Brown

I felt like I had let everyone down. I wanted to be the person that overcomes obstacles AND finishes the race. I didn’t want to just be that girl that tries really hard. I wanted my goals achieved. However, I know I let no one down. No one is disappointed in me. I would move mountains for my honored heroes and that day I went as far as physically possible for them. These emotions are still raw, but I know with time they will soften into a gentle pride of my strength to enter the arena and dare greatly.

“The credit belongs to the man in the arena […] who at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.” – Theodore Roosevelt

My coaches, family, friends and teammates all rallied around me with words of support and pride in what I accomplished. I was met back at our team gym by my coaches and team managers, long after everyone else had gone home. They made my journey feel complete.  They congratulated me, shared some tears and gave comforting words of closure on my race. One of my coaches reminded me that it took more courage to decide to stop the race, than to decide to continue – and that was really the closure that I needed. Yes, I was sad, but I was also brave.

“We will all struggle and fall; we will know what it means to be both brave and brokenhearted.” – Brene Brown

So that’s my marathon story. It’s not perfect. It’s full of pain, vulnerability, tears and struggle. But it’s also full of hope, strength, love and the humbling power of many people believing in my dream. I can’t deny the hard parts. This is my truth. But this is not my ending.

MDA Team Momentum -the greatest team to ever exist. Join us!
Freedom of Adapting

Freedom of Adapting

In 7 days, I am running a marathon. 26.2 miles. My first. An endeavor I have been working towards for months. I’ve been visualizing this finish line for years, and am excited to finally make it happen. When picturing this moment, however, never once was I crossing I finish line in the manner I will be next weekend.

I will be crossing the finish line in Chicago with the support of two forearm crutches. And I am okay with this.

A little background: I started using forearm crutches (the SMARTcrutch Junior) for long walks or extended periods of standing this summer as a way to lessen the pain in my spine. I’ve got chronic (but stable) stress fractures in my spine and juvenile degenerative disc disease throughout. Simply put, my spine is about 50 years older than I am.  I use forearm crutches to relieve the downward pressure/forces acting on my spine, which has helped more than any other intervention I’ve tried.

My spine MRI compared to relatively normal one, for visual

Running was always an activity that caused me the least back pain. Although the forces on the spine seem to be greater when running, for some reason the constant motion and engagement of muscles never aggravated my spine pain.  Until earlier this month. Randomly and without reason (as is common with EDS), my spine pain increased dramatically after mile 11 on training runs.  My coaches and I tried altering every little thing we could to try to reduce this pain.  Everything from using KT tape, my back brace, stretching every 5 miles, switching my pain medication schedule, altering my run/walk intervals etc.  We tried switching anything that could have possibly been contributing to the pain. All to no avail.

I knew something was going to need to change if I was going to reach my goal of completing this marathon within the time limit. I was already registered as an “Athlete with a Disability”, which allowed me to start earlier and avoid having to stand around in the start corral before the race.  So I knew I had the resources available to me to make this marathon happen.  While running the Chicago Half Marathon last weekend (part of my training), my solution came to me.  Yet again, around mile 11 my spine pain increased, but this time all I could think was “I wish I had my crutch out here with me.” Other runs I had just been focused on the misery of the pain, but now I was thinking of solutions.  I knew that simply taking off even a fraction of the weight on my spine would make a difference in my pain.

I finished that race in quite a bit of pain, and knew deep down my crutches were going to be a race day companion. Initially, I tried to fight this realization so I could protect my “ideal” picture of the race. However, there was always that rumbling inside that knew the truth. After going back and forth with myself and my coaches, I finally committed to the decision to use forearm crutches in the race. [with medical clearance]

I placed an order with a medical supply company for a sturdier pair of forearm crutches and modified them for running, using materials my OT had suggested. After taking them out for my first run, I knew I had made the right choice. My pace didn’t suffer, my posture was much improved and my spine felt great. I’ll be using only one crutch for the first 14 miles and then will be picking up the second crutch at my MDA Team Momentum cheer station to finish the second half of the race with both forearm crutches.

Use of forearm crutches also helps reduce altered running form due to pain, like these uneven shoulders

After processing this change, I realized the switch to use forearm crutches during my race is an opportunity for freedom, not sadness. I am still covering the distance. My legs are still carrying me the miles. It will still be a challenge. And best of all, I’ll still get to use my miles to honor my heroes fighting muscle disease as a member of MDA Team Momentum.

I’ve dreamed of this finish line since the moment I woke up from my first major surgery four years ago. EDS may knock me down, but I’ll always adapt and overcome. Using forearm crutches to run this marathon gives me the freedom to enjoy the race. They give me the power to rise above EDS and take control of my life. There is nothing sad in that.  Yes, my marathon will look different than I first imagined, but I’ve found freedom in realizing this is okay. Change is okay. And that, my friends, is a powerful statement to embrace.

A Letter to Myself on the Day of Diagnosis

A Letter to Myself on the Day of Diagnosis

Dear little Abbey,

I don’t remember when you’ll understand what it means to have Ehlers-Danlos Syndrome, but at age 7 you already know the ways you are different.  Your first knee dislocation was scary, but you didn’t know it wasn’t a normal injury for someone in elementary school.  When you dislocate your knee a second time while coloring on the floor, you are scared.  Even at your age, you know coloring isn’t supposed to hurt.  You’ll be afraid to sleep at night because you are scared to dislocate again. It breaks my heart now to think of how scared you were.  However, the fear will subside and it won’t control you. You are so strong, little one.

After another dislocation you’ll start to feel different from your friends.  Your doctor will not let you play outside at recess for a while, so instead you’ll stay inside.  Your classmates won’t understand.  Your teacher will try to explain it to them, but it embarrasses you.  You’re resilient though and this won’t phase you for long.  You’ll be back to the soccer field before you know it.

Speaking of soccer, you’ll also get these huge knee braces to wear when playing and you’ll hate them. Sorry about this.  A team parent will make a joke about the braces when they think you can’t hear them. This will make you hate your knees for the first time and you’ll cry later that night.  I promise their words won’t stick with you forever, but you won’t forget the feeling of being called out for your differences.

You’ll go through multiple tests and doctors appointments each year, but most people won’t even know this part of your life because you don’t let it define who you are.  There will be lots of pain you won’t understand, but you’ll learn to distract yourself by entering the world of books.

You will affirm your strength at age 8 when you dislocate your knee while Mom gets her haircut.  You will be scared and in pain at first, but instinct takes over and you’ll put your kneecap back in by yourself.  Having the power to decrease your pain levels without the hospital will feel so good. You’ll dislocate your shoulder and fingers a few times in elementary school as well, but you put those back in on your own too.  Can you believe how brave you are going to be? I’m so proud of all you’ve done.

You’ll start playing lacrosse in middle school, despite doctors warnings about sports.  You love it and will work so hard to improve.  Eventually by Junior year of high school, you’ll make the Varsity team.  You also join the cross country team in high school and really find your passion. Your body isn’t meant to run, but the feeling of having control over your pain while you run sets you free. You’ll work hard to get faster and will battle many injuries.  Eventually you’ll be voted Captain and you’ll thrive in this leadership role.  You have such a great life ahead of you, little one.

2013 will be your year of knee surgeries. You’ll have 3 major knee surgeries within a year and three days.  It will be the biggest challenge you’ve ever faced.  The recovery is hard, excruciatingly painful and long.  You’ll cry yourself to sleep the night before the second surgery because you don’t think you can handle going through it all again. But you do great.  The third surgery will come as a surprise after the screws break from the previous surgery.  This hits you hard because it will cancel your first racing season as a novice coxswain for the University of Minnesota.  You can handle the pain, but you didn’t know if you’d still have a place on the team after you recovered.

Luckily, you’ll be surrounded by teammates and an amazing coach who will support you and stand up for you.  Minnesota Rowing makes sure to have a spot on the roster waiting for you. Your teammates work hard to continuously support you every year.  A spine injury will eventually end your career with the team, but you’ll cherish the time you were able to participate.  You’ll run two half-marathons after these surgeries and complete your first triathlon.  You are unstoppable.

Little one, pain will accompany you your entire life.  I wish I could take that away from you, but you will take it in stride.  Your life won’t be defined by Ehlers-Danlos Syndrome. You will push your limits and defy the odds. You will accomplish so many great things and be surrounded by constant love and support from friends and family.  Hang in there.  You can do this.

I’m so proud of you.


Abbey (age 21)