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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 https://goo.gl/forms/J3yTYNTiF07sSxWT2 or a general donation can be made at www2.mda.org/goto/AbigailHauser2018.)

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!

Rare Disease Day 2018

Rare Disease Day 2018

Below is the video and transcript of a talk I gave on “the soul of rare disease statistics” at a Rare Disease Day Reception to lawmakers and rare disease families at the Minnesota State Capitol on February 28th, 2018.  I am very thankful to the Minnesota Rare Action Network and the National Organization for Rare Disorders for the opportunity!

 

 

95% of rare diseases do NOT have an FDA approved treatment, and 30% of children living with rare disease will not live to see their 5th birthday.  One rare disease, spinal muscular atrophy, is the number 1 genetic killer of kids under the age of 2. Additionally, 80% of rare diseases are genetic in origin and in total, 1 in 10 Americans are living with some form of rare disease.

That’s a lot of data, but these are the points that are often brought up when discussing rare disease.  Although accurate, these numbers are missing life. Every statistic brings together the lives of many people fighting rare disease in a world that does not offer a lot of options to such patients.  Data is helpful when looking at big picture, but it lacks a soul – a story.

This month I launched a “Rare Stories Interview Series” on my blog, where I’ve had the honor of listening to other rare disease patients tell their story.  In time, I will feature each patient’s story, as means to give faces to these large statistics.  It is my goal to give more rare disease patients the incredible experience of sharing their story with the world while bringing awareness to their conditions.  I created my blog, OwningMyStory.com, just over a year ago, as a way to finally tell my story of life with a rare disease.  As a kid with Ehlers-Danlos Syndrome, I never wanted to talk about this thing that made me different.  However, as I got older, I realized by denying this part of my story, I was losing an opportunity to impact the future of rare diseases.  I was tired of pretending life with a rare disease is easy, and as a result the experience of finally being open about my health and challenges I face was extremely cathartic and increased my confidence immensely.

I wanted to then give other rare disease fighters the chance to feel the power of “owning their story”, especially those who might not have the means of sharing their story any other way.  In a community based on uncommon diseases, stories like this build community.  They make us feel less alone in our fight.  One woman told me “it’s because of advocacy like this that [she] still feels hopeful of the future”  while another said “[they’ve] kept quiet for years about [their] rare disease, and this project is the outlet [they] needed.”

The stories I’m working on represent a small portion of the statistics, but are the soul of the numbers. Our stories give this data meaning.  So, I urge anyone working in rare disease advocacy or health policy to take the time to listen to rare disease patient stories. The rare disease community may sound small, but as we come together to share our stories, our strength grows.  We find power as we realize our stories are more alike than different.

As Brene Brown writes, “When we deny the story, it defines us. When we own the story, we get to write a brave new ending.”  It’s now up to us to write a new ending for the story of rare disease.

Thank you.

 

Rare Stories: Meet Allison

Rare Stories: Meet Allison

 

Imagine someone gently pulls on your arm to get your attention. Only, instead of turning to the person, intense pain erupts as your shoulder is pulled out of place from the simple movement. A situation like this is Allison’s reality and is what led to a doctor referring her for a connective tissue disorder evaluation.

After five years of fighting symptoms, she received a diagnosis of Ehlers-Danlos Syndrome-Hypermobility type (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia that causes large heart rate spikes upon standing, among other symptoms. Allison describes EDS as her “joints constantly not being in place” and often jokes that she is like the mom from Disney’s The Incredibles – super stretchy.  This flexibility and joint instability leads to pain, which she often compares to arthritis when describing the condition to adults.

The initial time after diagnosis was particularly challenging for Allison, as she “felt so held down by [her] diagnosis.” Simple tasks, like going up the stairs, became difficult and were a constant a source of frustration.  Although she spoke of these challenges, her fighter spirit was present throughout her interview.

She especially wants others to know she isn’t looking for sympathy or pity when she talks about her conditions.  In her own words, “I’m still strong and kicking butt!” Her rare disease has given her strength and perseverance that helps her conquer her unpredictable days with hEDS and POTS. Allison turns each day into a new challenge for herself, “like what will today bring? You never know whats going to happen, but you can mentally prepare yourself for anything.” Her day to day health management consists of taking a variety of vitamins (deficiencies are common in hEDS/POTS) and using braces or ice packs to help control joint pain and dislocations. 

Allison has learned to not let her conditions drag her down, but instead lets them empower her. She recently began openly talking about her conditions and advocating for others with chronic illnesses. It takes a lot of bravery to open up about the hard moments of our lives, and I applaud Allison for helping others with her experiences!

As many readers know, I am a strong believer that “it takes a village” to be a human in this world, rare disease or not.  Allison says her village consists of her amazing friends, family and boyfriend – who all support her through the good and bad days.  She also gains strength from online communities of other warriors with her conditions, who give her a sense of comfort in knowing she isn’t alone in this fight.

Allison works hard to conquer life with rare disease, and believes the word “UNSTOPPABLE” describes her best. Since her diagnosis, she is most proud of herself for being elected the SkillsUSA Virginia Vice President and has also excelled in many state and local graphic design contests! Nothing holds her back from her dreams and she often refers back to the quote “be fearless in the pursuit of what sets your soul fire” to remind her to bravely pursue her passions. 

Adopting this fighter mentality after a rare disease diagnosis certainly takes time, and Allison wants anyone newly diagnosed with hEDS or POTS to know that:

    “getting diagnosed can sometimes feel like the end of the world, or that your whole life is going to change. But that isn’t always the case. Things will get better and being sick does not mean that you are weak or powerless.  You’re still beautiful and amazing and can do anything you want.”  

You are certainly unstoppable, Allison and I thank you for your bravery in sharing your story! #FightOn

 

Rare Stories: Meet Henry

Rare Stories: Meet Henry

Despite only recently celebrating his 5th birthday, Henry already has developed a strong fighter spirit.  This little warrior has Merosin-Deficient Congenital Muscular Dystrophy and lets nothing get in his way.  CMD can be hard to describe to young children,  but his school counselor has written a story about him that they share with his school classes each year to teach the kids. Henry says he usually just tells his friends his name and “that this is my wheelchair.” Most kids his age think his power wheelchair is super cool and eventually they don’t even notice it – “It’s just me.”

Henry also has a strong support system of family and friends who help him reach his goals and raise money for CMD research.  Although Henry is the inspiration behind “Henry’s Heroes”, a Muscular Dystrophy Association fundraising team, he lists his mom, Stephanie, as his own personal hero.

Henry’s “toys, wheelchair and Mario Brothers” make him most happy.  His wheelchair gives him the freedom of independent movement and lets him keep up with his friends.  He also says his “muscles and superman shirt” help make him strong, but if given the choice, “fire power, flying power and strong power” would be his preferred superpowers.

Henry is showing everyone that his rare disease diagnosis and wheelchair do not define him. He can do anything he puts his mind to and works hard (while having fun) to continue gaining skills in physical and occupational therapy. I’ve always found a child’s perspective on disease and disability to be refreshingly honest and hopeful, and Henry’s view is no different. This 5-year old wants anyone newly diagnosed with Merosin-Deficient Congenital Muscular Dystrophy to know that “it is okay.”  Cue heart melting.

Thanks for letting me tell your story, Henry!

A Year of Adapting

A Year of Adapting

2017 highlights:

  • started my blog and sharing my story with the world
  • earned my Bachelor of Science degree in Kinesiology
  • ran two half-marathons with Team Momentum (in May and September)
  • enjoyed spending the summer working at a youth recreation program
  • completed 22 of the 26.2 miles of the Chicago Marathon in October
  • biked 57 miles in my favorite local bike event
  • spent a week volunteering at MDA Summer Camp with my favorite kiddos, for the 7th year in a row
  • joined a summer handcycling group for weekly rides (I loved handcycling!)
  • enjoyed a long weekend of camping with friends
  • started working part-time this fall to minimize back pain from sitting during work hours
  • attended a Rare Disease Advocacy Summit to learn more about advocacy efforts in my area
  • learned how to sit ski and classic ski from Paralympic coaches at a local clinic in December
  • signed up for another adaptive sports group to sit ski in 2018

 

Reading my list of 2017 highlights makes me excited to see what a big year 2017 was, but it also feels incomplete.  In between those accomplishments were many battles (both large and small) I fought in order to reach my goals. The list below isn’t necessarily what I want to remember 2017 by, but I can’t discredit the important part they played in helping me grow this year.

I also:

  • finished almost 9 months of initial PT for my spine stress fractures in April
  • started using a prescription pain medication daily, which has greatly improved my quality of life and activity level
  • developed tendinopathy in my forearm (brachioradialis tendinopathy)
  • completed 4 weeks of OT and Hand Therapy to reduce pain in my forearm + hands so I could type and write again
  • added additional finger and thumb splints as needed, to reduce hypermobility and increase hand strength
  • started using forearm crutches to relieve pressure/pain on my spine when standing and walking, which has been an amazing tool
  • had two minor GI procedures under anesthesia
  • injured my knee in June
  • spent 3 months recovering from knee injury at my favorite PT clinic
  • completed a round of antibiotics for non-specific inflammation in my large intestine
  • developed a secondary infection from the antibiotics and completed another course of medications to kick that infection
  • spent another 3 months at a new PT clinic focused on my spine pain with small improvements

Life with chronic illness is full of these lists – the “normal” things you do alongside the battles you fight to make those happen. EDS tags along on every adventure I have, but it doesn’t have to always take center stage. My body will always be prone to overuse injuries (just from existing) and is likely to continue developing early onset arthritis from repeated joint injuries. A few of my vertebrae will likely stay “functionally fractured” from lack of healing, low bone density and juvenile degeneration, and my knees are likely to continue to cause problems down the road.  These are the facts of my body, but I’m not willing to live contained by those boundaries.  It’s my job to understand the way my body functions, so that I can select goals and activities that work for me without ever saying “I can’t”, but instead “let’s see how I can make this happen.”

I’m most proud of myself for breaking out of my shell and getting involved with adaptive sports in 2017.  I used to feel like I never had “enough” of a disability or impairments to be able to benefit from adaptive sports. However, my local adaptive sports coordinator and program volunteers have never once made me feel like I didn’t belong. They have been so willing to learn about my limitations and adapt whatever equipment we were using to work with my body. It’s been such a freeing experience learning there are ways to participate in my favorite sports without hurting my joints or increasing injury risk.  Joining adaptive sports has taught me I have the power to be creative in adapting to and overcoming anything that gets in my way. It’s opened up a whole new world for me, and I’m excited to see where 2018 takes me.

 

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.

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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.

In This Moment

In This Moment

Life has been a whirlwind of activity lately, and since May I’ve:
– graduated from college
– ran a half-marathon with MDA Team Momentum
– moved back to my hometown
– spent a week volunteering at MDA Summer Camp
– started two new part-time jobs working with youth summer recreation programs.

EDS has also been along for the ride on this journey, and caused some excitement of its own in my life.  Since May I’ve also :
– used a wheelchair for the first time to conserve energy and reduce pain while visiting a museum with a friend
– injured the already worn cartilage in my right knee
– started physical therapy for my knee (again) along with my spine at my favorite clinic
– joined an Adaptive Cycling program, where I am learning to handcycle
– started wearing finger splints to reduce pain in my hands from hyperextension

Both lists are a highlight of what I’ve been up to recently and things I am proud of (minus the new knee injury), yet it’s the first list I find myself sharing with others because it is easier to understand. My second list might seem to describe ways EDS has intruded further into my life, but in reality these are moments I chose to be in control. They are times I accepted that asking for help does not make me weak.  They are good moments. Having a chronic illness helps me recognize the importance of finding the good in each day. Not every day is great, but I believe good can be found in each day.  Sometimes my highlight is just being able to sit without pain for 15 minutes while other times it’s attending an event with friends without being distracted by symptoms.

Celebrating accomplishments, whatever they look like, can get us through anything.  I believe our simple accomplishments should be celebrated the same as our large ones.  In the midst of a tough day, where my biggest accomplishment might only be not needing to take extra pain meds, it’s dangerous to think that this isn’t enough. Whatever your accomplishment is in this moment, celebrate it and trust that it is enough.

Another powerful part of staying in the moment is it’s ability to calm our worries about the future. I struggle with this one a lot, but I work hard to calm my mind by staying present in today. I’ve recently started the “trek” of working with my medical team to determine the cause of some symptoms that have plagued me this past year, resulting in unexplained weight loss and prolonged periods of feeling unwell among other things.

As a result, I have been scheduled for a set of outpatient diagnostic procedures next week that require me to be put under general anesthesia.  Although I have responded fairly well to anesthesia during prior surgeries, patients with EDS have an increased risk of complications, meaning every procedure carries a slightly higher risk than average. It is this part that scares me, but I trust in the medical team caring for me. I’ve also never had these tests performed, which only adds to the unknown. I don’t usually enjoy the unknown parts of life, and this procedure definitely falls into that category. However, staying grounded in the known facts and gratitude of today helps take the worry away about tomorrow.

As my favorite Harry Potter quote reminds us,

    “What’s comin’ will come, an’ we’ll meet it when it does.” – J.K. Rowling, Harry Potter and the Goblet of Fire

Time passes whether we want it to or not, so it’s best I focus on today and meet the future with a brave smile when it comes.

Pain with a Purpose

Pain with a Purpose

It’s probably no surprise that running is not usually a recommended activity for someone with the frequent injuries and joint issues associated with Ehlers-Danlos Syndrome.  It seems to confuse a lot of people that I can have chronic pain and other EDS symptoms, yet still be able to run.  Since I recently started training for my third half-marathon, I thought this would be a good time to explain why I choose to run despite any extra pain it may bring me.  Managing EDS is all about balancing my energy and pain levels with my daily activities.  Some days running is possible, while other days I have to modify or sit out to recover.

When I run I am the same as every one else.  If we cross paths on the trail, you won’t see my scars, the medications I take, the weakened bones or the frequent dislocations.  All you’ll see is a fellow runner working to improve their endurance, strength and speed. I love that about running.  I can leave the troubles of managing a chronic illness at the door and feel like any other runner.

Although I can leave these troubles, that doesn’t mean I train the same way as a “normal” runner, or that I can ignore symptoms.  Due to frequent injury, I often have to start running again from ground zero.  I’m in a constant cycle of being “uncleared” and “cleared” to run from my medical team.  I have to respect these guidelines (for the most part…but that’s another story) and try my best to avoid running while injured.  I also spend more time on post-run recovery than a typical runner in order to protect my joints, my easily knotted muscles and to reduce pain.  This recovery process involves lots of icing, TENS unit sessions, heat, elevation, anti-inflammatory medication, compression, icy hot (or similar brand) patches and foam rolling, depending on the site of pain or soreness.  It also means I can’t run every day. I can usually manage 2-3 runs per week, but I’ve learned to work around this limitation and fit my race training into my abilities.

Running also gives a purpose to my pain. Soreness after a run is comforting to me because I know exactly what caused it. This might seem like a weird statement, but Ehlers-Danlos Syndrome rarely gives you pain that makes sense. I often don’t know why I hurt. I’ve dislocated joints while sitting on a couch or coloring on the floor, activities that are not supposed to hurt. However, running gives this pain a purpose, which is something other parts of my life cannot do.  EDS rarely makes sense, but running always does. Running might cause me more pain than the average runner, but I know my body and understand which pains are dangerous or signal oncoming injury.  Running has taught me that I am in control of my body, even on days when it feels like my body controls me.

I firmly believe running has helped me manage my EDS symptoms. It’s helped me strengthen my muscles to support unstable joints.  It’s given me the confidence to realize I can do anything I want in this world, no matter the limitations that have been placed on me.  It’s also been an incredible outlet for managing stress.  There is just something about my legs pounding the pavement that allows me to forget about my life and just run.

I have incredible friends who support me every mile, whether by joining me on long training runs or by helping me during the post-run recovery phase. I’ve also met incredible teammates through MDA Team Momentum, who join me in using our training miles and races to raise money for the Muscular Dystrophy Association and run for those who can’t. Running might be hard for me, but I certainly don’t take any step for granted. I know this ability can be taken from me at any moment, so for now I’ll keep running and using my miles to help this world for as long as I can.