I felt untouchable.
Walking into this school year just three short weeks ago, my head was held high, and I felt like I wasn’t going to let anything get me down.
Before I left home, I asked both my parents and my brother what their favorite year of college was. They all said year three.
If that was all of their best year, it should be mine too. Right?
Granted, year three of college was when my parents started dating.
But still, skewed results and flawed logic aside, year three for me should follow suit with the rest of Team Ellis… right?
On Saturday, sitting in my dorm at midnight after the Gator game that they all came to Gainesville for, staring at my brother who had been standing there for an hour while I just sobbed, I wonder where my “best year yet” was.
I cried, as he begged me to talk to him. I told him he should leave, but he wouldn’t (firm believer in that a big brother is one of the best gifts God can give a girl).
He would let me cry, and then ask me again to talk to him.
I explained to him that I didn’t even know what exactly was wrong, because a lot of what was swirling around in my head didn’t make sense to me.
I feel more secure in the community I have here than I ever have, my faith is in a solid spot and my semester is lining up well. But still, I found myself struggling to not feel lonely and to feel happy a lot of days.
I explained to him how certain situations in my life are out of my control but feel like they’re controlling my life.
I explained to him the realization I’m having that every kid with CP is different. And while I’m truly in some of the best shape of my life, I’m still in a lot of pain. Which, at this point, likely means a lot of my pain is probably just going to be a chronic struggle for me.
And that just plain sucks and is a really hard pill to swallow.
I told him that it’s really hard for me that for the first time, the three of them are all together living in Orlando, and I’m here in Gainesville.
I wanted to go home. Suddenly, I was crumbling right in front of my brother.
Which was the last thing I was expecting coming into this year.
As I leaned into him and soaked his shirt with tears, I realized one thing: even when you feel untouchable, you still need other people. You still need to give into the freedom of depending on Jesus. Because that feeling of being untouchable is just that. A feeling. And even in just a short three weeks, it can be stripped from you.
As he sat on my bed, and my parents who had now come back into my dorm and were standing in front me, my eyes drifted to the top of my desk where I have a wall of sticky notes.
It’s full of words some of my favorite writers wrote, reminding me how to be grounded in what I write and of the type of writer I want to be. One stuck out to me:
“Next to grace, I bet God thinks making us need each other was one of his best ideas.”
~ Bob Goff
Even when you feel untouchable, you still need to lean on other people.
Even when you feel untouchable and feel like you can handle it, you still need to turn to God and let him handle it.
Because combining those two things is the only way you’ll actually be untouchable. Not just feel like it.
Still counting on year three to power over a few hard moments and difficult situations. But learning to not let expectations control everything.
And continuing to learn the freedom in dependency on Jesus and the important people in my life.
This blog has become a place where I try to follow the Lord’s call on my life and put my story out there. My hope is that someone going through a similar situation can learn from my journey and know that they are not alone.
I hope in that, it is obvious that none of this is about me but about what the Lord can do.
Last week, I stood in front of the people who have become my family at UF and tried to tell them all that the Lord has done in my life since starting college and how they have played a massive part in pulling me through some of the hardest stuff I’ve faced.
This small piece of the internet I own has also become a place where I try to thank the people that mean the most to me.
So, this post is for two reasons: to thank those people and to hopefully show you the power of true community.
College has undoubtedly been way harder than I thought it would be.
As a freshman, I hit a point where I was wondering what the heck I was doing at UF. I yelled at God for putting Cerebral Palsy (CP) in my life. I couldn’t accept my situation, so I felt like it was impossible for me to be loved and accepted by other people.
I thought about the future more than ever and was filled with more fear than ever.
It was a year of loneliness, anger and fear.
But then through a friend from home, I was brought into a community that wrapped their arms around me and accepted me and my brokenness in a way I can truly say, I’ve never experienced before.
I’ve always been the shy, quiet kid. I tend to hide a little and step back, feeding into my number one fear: that my crutches and I are a burden to people.
But suddenly, I found myself in a huddle of people who broke down pretty much every wall I had built. A group that didn’t care about my crutches but cared about me. People who I cried in front of, was brutally honest with and people who walked with me through my darkest places.
People who recognized my struggle with CP and everything that comes with that and pointed me to Jesus, even when he was who I was maddest at.
People who said through their actions and words that they weren’t going to leave me.
Through lots of tears, time in the Word and the most honest conversations I’ve ever had, these people have helped me see that I am so much more than my disability and that I have so much worth.
Putting on a brave face is something I’ve become really good at. But I’m so thankful for this community that has seen past just my brave face and seen the truth of what I struggle with. Even when I don’t want them to.
The past two years, I have grown so much in my faith. And I owe that to the people I’ve found here, who I’ve been able to lean on.
Two years ago, if you asked me how I felt about having CP, I would’ve told you that I wouldn’t change it because I knew that the Lord had a plan to use it in my life.
Half of me believed that. Half of me was probably saying it because it was what I wanted to believe, but I didn’t really.
In the past two years, through the people who the Lord instrumentally placed in my life, I have learned these things:
An eternal mindset is what matters. With a focus that one day, when I’m with the Lord, I’ll wake for the first time in my life pain-free, I’ll run and I’ll kick a soccer ball without falling over, I can find true joy and hope.
I have worth in being a Child of God that isn’t any less because of my CP.
My story isn’t about me. It’s about how the Lord has taken one the hardest things in my life and used it for his glory.
Honesty and vulnerability are scary. But they're what builds the most meaningful relationships.
True community can change your life and save your life. It did both of those things to mine.
Today if you ask me how I feel about having CP, I’d tell you wholeheartedly that it is one of the biggest blessings in my life, it’s 100% what keeps me rooted in my faith and it’s full of hope. Because the Lord’s plan is great, and my CP isn’t forever.
But I would also tell you that I would’ve never believed that or found that answer if I didn’t meet the people I did at UF.
To my UF Navs fam, you truly have no clue just how deep your impact has been on my life. Thank you for loving me and accepting me and helping me do the same to myself. Thank you for pointing me to the truth even when it was the last thing I wanted to hear. Thanks for pushing me out of my box and helping me to be things I never thought I could be.
To the freshman or new kid on a college campus struggling with something, feeling alone and unworthy: I was you. It may take a bit to find true community, and that’s okay. It took me a year.
But keep looking for it.
And when you find it, invest. Be honest, don’t run away when you want to.
Because those are the times you really should stay.
As I walked the halls of the hospital at work the other week, I realized how one sentence has controlled so much of my life.
A little boy in a lime green wheelchair sat not smiling, in a lobby I know too well. I gave him and his family a smile and a subtle wave, because I could ballpark the type of news they just got.
And it’s not fun. I’ve been there.
As I rounded the corner into one specific hallway, my heart rate shot up.
I looked at the train set in the middle of that hallway. I still hate MRIs to this day. I still cry and sometimes panic, once a year in that tube.
At 20 years old, an MRI is still what gets me. My breath gets short and heavy and tears spill as my mind reels over and over, refusing to forget the one or two times that things weren’t okay.
And as a kid, seeing that train set, decorated happily for every season and holiday, was the only thing that kept me calm some days on my way back to the MRI machines.
As I circled back around, I pinpointed exact chairs I’ve sat in beside my family and pastor as we prayed before I headed up to an O.R.
As I left the hospital that day, I saw a bench I’ve sat on more times than I can count. I remember sitting there sobbing into my mom’s shirt, saying one thing:
“I just want to be normal.”
In middle school when I was sitting at home in a wheelchair instead of at school, I cried the same thing.
In high school, I sighed and said the same thing to myself again when I watched everyone getting ready for Homecoming or Prom from the sidelines.
A few days ago, as I went in my garage to do PT for the second time that day, I cried.
And said the same thing.
“I just want to be normal.”
As I walked around the hospital that day, it hit me. So many kids in these hallways, no matter their medical challenge, were probably saying the same thing.
It made me reflect back on how often I’ve thought that sentence and how it has skewed my view of my life, without me even realizing it. I forced myself to think back on the earliest time I can remember thinking that my life wasn’t or never was going to be “normal.”
At 20, I sat in my room, and was suddenly really sad when I forced myself to pinpoint my first “I’m never going to be normal” memory.
I was 10. My second-cousin, who really feels more like a sister to me, was getting married. I was a Junior Bridesmaid, and I was so nervous walking down the aisle.
I just didn’t want to trip and fall.
As I stood at the back of the church ready to go, I’ll never forget the strange feeling of relief I had.
“At least this is probably the only time I’ll have to worry about walking down an aisle like this. People with canes and walkers don’t get married.”
I was 10 and thinking that is still so vivid to me.
I remember just taking it as fact.
I was 10, and I had already started to fully believe things that probably aren’t true about my life. Just because I didn’t think I was “normal.”
A 10-year-old shouldn’t be writing a story like that for her life. But that’s how much my idea of “normal” messed with my head.
When I was 16, I wondered if I’d ever be “normal” and be able to drive.
When I was 17, I hated that I still wasn’t “normal” and couldn’t play soccer.
When I was 18, and I stood across a teacher’s desk as they told me that they thought I needed to go to a small college because of my challenges, I thought: “I just want to be normal. I just want to be a Gator. I got into UF. I want to be a Gator. But can I actually? What if they’re right, what if it’s too much?”
When I wake up every single morning and something hurts, it’s a really easy thing to think.
As all these memories were flooding back in my head, I started to get really mad.
I hated that one word, normal, had controlled so much of my mind and my life.
While this is still something I say in my low points and “being normal” is still a lie I fight away, I know now that there really isn’t actually a “normal.”
Because no two people are the same, and everyone’s got something.
The reason I’m writing this post is for the medically challenged kids, thinking that poisonous sentence right now.
Because truly, honestly, it is one of the worst things you can do to yourself in my opinion. You’ll slowly start to think it at every stage of your life. Trust me. I’ve done it.
It’ll create lies. It’ll drive you crazy.
So, to the kid in a walker, the kid in a hospital bed, the kid who has had more surgeries than years on this Earth:
Take it from someone who has done it all her life and wishes she didn’t. Never say or think “I wish I was normal.”
Don’t. What even is “normal” anyways?
Sure, some of us don’t walk like our friends. Or we have more doctors’ appointments than anyone else we know. Or we know the ins and outs of a hospital better than our school.
And while those things can really suck sometimes, do me a favor. Don’t let the idea of not wanting your life to be that way, define the way your life actually is and is going to be.
Spoiler alert: I’m a Gator, and I drive a car. I'm getting around not being “normal” just fine.
When you’re stuck in this medically challenged bubble, it’s so easy to instantly hate it and search for a way out. I’ve done it time and time again.
But as I sat across from my dad at breakfast the other morning, one sentence he said hit home.
“I think you know that those crutches have created just as much blessing as they have struggle in your life and ours.”
To the kid like me, wishing that they were “normal,” don’t do it.
Take your life in front of you for the great thing that is. Don’t focus on what you can’t do, focus on what you can do.
Don’t let one word that really isn’t even a true thing, skew how you look at and live your life.
"I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well."
There’s a line in one of my favorite Switchfoot songs, Dare You to Move. It goes:
The tension is here
Between who you are and who you could be
Between how it is and how it should be
I read those words recently, and honestly nothing struck home more. Lately, I’ve felt myself stuck in the frustration of who I could be and how I think things “should” be.
I’ve discovered that college feels like this weird, hopeful but frustrating time. The world is at my fingertips in some sense. But a lot of days, I just don’t know what to do with it.
I have unfinished journal after unfinished journal, because there are too many words in my head. I have dream after dream that I haven’t told anyone about because disappointment is something I’m most scared of.
I sit in my room too often, stuck in my daydreams. I chase them in circles in my brain, until they spin themselves into frustration and I fall into a hole of “should bes.”
Should bes that cause me to be hard on myself like:
I should be farther along in my dream of writing a book.
I should have a better answer for what I want to do with my life.
I should be a better daughter, sister, friend and relative.
So many more follow suit. Should bes that scream frustration for the people I love.
Shoulds bes are painted with hurt from broken dreams.
And should bes that get in the way of dreams that I haven’t even pursued.
So often, I don’t live in the present. I get trapped in the tension of the ways I think things should be.
I think of the future and dream of all I want to be and get stuck in a circle of “could be.”
But the frustration is where I think I get tripped up.
I get frustrated that my “could bes” and “should bes” aren’t reality because of how fast paced everything is in today’s world.
Comparison is at the core, and I believe that it drives so many people down.
The thing I’ve had to learn lately is to not live in the “should bes.”
The fact of our instant gratification world makes me believe that a lot of dreams are dead, just because I don’t have them right now.
When in fact they’re not dead, they’re just not here yet.
I think the thing I’ve found peace in is learning to love my pace. It may not be as fast as the person next to me, but that’s okay.
Some of my friends are graduating early with not one, but two degrees. I’m smiling, and suiting up for “sophomore year 2.0,” as I like to call it. Because right now, your pal here isn’t graduating on time.
But I’ve learned that that is perfectly fine.
“Should bes” and “could bes” are dangerous things in my opinion.
Because so often, they instantly turn into frustration.
But I think there’s actually so much excitement in all the “could bes” in my life. The dreams that might happen.
And there’s freedom in leaving the “should bes” behind.
“Could bes” are something that still have the capability to come true and “should bes” are something that can lead to so much freedom when you let them go. I see “could bes” as something I might still have a chance to control and “should bes” as something that I don’t necessarily have that chance with.
But all of that is freeing, hopeful and okay.
The tension is here. And that is a good thing.
I can’t tell you how many times I told God that: “But this isn’t where I want to be.”
By my sophomore year in high school, I was convinced that if I was at any other school, life would instantly be better, and my problems would magically disappear .
I didn’t want to be in that season of life; a season riddled with friend problems, insecurities and pain.
Even as a graduating senior, I thought nothing good would come from this time. I told God that all I got from that period was lots of tears, deep wounds and trust issues, loneliness and bitterness.
But when I look back now, I see him at work. I see that my tears drew my family closer together.
I see now that he has turned my wounds and trust issues that developed in that time, into a deep appreciation for the friendships that do and will last.
I see that he used my loneliness to draw me into him. He used my bitterness to really show me that my heart needed a lot of work.
Fast forward to the middle of my freshman year of college, and I was saying the same thing.
“God, I don’t want to be here.”
I would look at that view of UF and feel sick.
I was again convinced of something false. I was convinced I had made the biggest mistake of my life coming to UF.
The transfer applications open in my browser on any day that spring screamed what I thought was the truth: I didn’t want to be here. This wasn’t the place for me. I needed to get out.
But I didn’t leave for some reason. I stuck around, despite my attempt to convince God that I needed to be somewhere else.
Looking at the present, I see why he put me through that and kept me a Gator.
My freshman pain is the reason why I appreciate and seek true community so much. My freshman pain gave me perspective and showed me how much I blew small issues out of proportion. My freshman pain showed me truly, that God’s plan is always greater.
Sometimes I just have to wait it out, even if “I don’t want to be there.”
Just two days ago, I caught myself saying that again.
At the beginning of this semester, I had a dream of a summer planned with one goal in mind: to not be Orlando this summer. Circumstance after circumstance happened, and my “dream of a summer” completely fell through.
And guess where I’m 95% sure I’ll be this summer?
You guessed it: home. In Orlando. The one place I said, “No definitely not,” to.
Right after my plan exploded right in my face, I stomped my foot, and hit God with that whiney statement: “But God, I don’t want to be in Orlando this summer.”
With no other choice, I sat back and waited. I prayed for something to come up, so I wasn’t just sitting at home all summer.
Without giving too much away because I have nothing secured yet, something did come up.
In a completely chance way.
A dream of an opportunity if it works out, in the one place I didn’t want to be this summer.
Sitting here today, I’m face-palming myself and smiling.
Because who am I to ever say that where God is placing me isn’t the place to be?
Learning slowly but surely to stop telling him that I don’t want to be right in the middle of his glorious, perfect plan.
Because in the end, it always works out better than I could have ever planned.
Know this: it is so cool, freeing and humbling to just be wherever God puts you in life.
“He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.”
God’s timing is so sweet, friends. Lean in, and trust it.
Related posts: Buckling up through chronic pain: when it takes me down, but God meets me in the valleys.
I don’t know why, I wish I did. But for some reason for the whole month of March, my body didn’t want to give me a break.
Some family and friends could hear it in my voice or read it on my face: I was in a full out boxing match with Cerebral Palsy for an entire month, and it was trying to take me out.
This has always been my life. Some weeks are better than others with my pain. Sometimes, those few hard, painful weeks quickly turn into a full month. Sometimes there’s a concrete cause for why my pain dial has suddenly cranked up that I can change or fix, sometimes there’s not.
March was a double whammy. It was a few random painful weeks that turned into a full month of pain that had no concrete cause that I could think of.
I remember realizing probably the second Sunday that I was in for it.
Tears burned as I was just trying to load my clothes into the washer. I remember limping back to my room, hopping on my bed and for the 30 minutes my stuff was in the washer, just lying there, not moving and doing my best not to cry too much.
I called my dad and told him that this was one of the worse spells of pain I could ever remember and that it felt debilitating.
He knows my pain tolerance is very high, so the fact I described it as “debilitating,” I knew would worry him. But the tone in his “I’m sorry Scooter,” told me that he knew I was crying even though I was trying to hide that fact.
I knew to some extent that this was just a side effect of being a CP kid and living completely on my own in college. And as I’ve discovered, college pace is fast and full, and CP and I don’t always keep up with it that well.
But what frustrated me was that while it was a busy week, it really wasn’t much different than previous weeks. What frustrated me was that I knew that it wasn’t anything that I did or was specifically doing that caused the pain. It was simply just my handicap body saying: “Jordan, I’m done.”
So, there was nothing I could do to help the pain stop. All I could do was lay on my bed. Fighting it mentally.
I’ve always said that as a physically disabled kid, the mental fight is actually harder than anything I face physically. Anger is easy to turn to, the “why” questions like to hide around almost every corner.
I knew that I couldn’t do that this time. And frankly, I was way too tired to be mad and scream at God.
Sitting in the middle of March, something in me told me this wasn’t going to let up, so I needed to buckle up.
I knew I was I going deep into a CP-pain-driven-valley. But on that Sunday, I made the choice not to be mad this time.
My prayer was simply for God to meet me there. To me meet me there and help me keep pushing. To help me keep smiling a smile that wasn’t through gritted teeth, trying to not let anyone know that my insides were screaming. A smile that was genuine. A smile that was strong, channeling the Jordan who somehow walked on a broken femur this summer, a day after surgery.
I prayed for that Jordan to show up and for the crying Jordan to leave.
And y’all, the main point to this post is this: when you ask him to, like really actually ask him to, God shows up.
Through my tears, I was begging him to. And boy, did he.
The back half of March was just as painful. I woke up every morning, and my shoulders screamed, my back cracked, and it felt like my legs said: “Sorry J, not doing today,” everyday.
But here’s the catch: I was happy because I was dependent on God. I was tired, but okay.
God placed thing after thing and friend after friend in my life to distract me from the fact that it felt like my body was shutting down. The happiness due to dependency showed up in my social life and school.
I hung out with more people than I probably ever have because I learned that it’s sometimes better to fight the pain off in the moment and just cry about it later instead of skipping things, just so I could be alone.
The week of a Macro exam would’ve had the old me spiraling out of control and stressing. Because I suck at Macro, and heightened pain only makes studying harder.
But I just buckled up. I put in my best. Early mornings with lots of coffee, and late nights sometimes with ice packs on everything that hurt.
And God met me there. Coffee, ice packs and all. I did better on that Macro exam than I initially thought I did. And I fully believe it’s because I decided not to stress, because I knew that if I gave my best, God would meet me there.
My point is not that you can now be aware of my chronic pain. Because the name “chronic pain” tells you all you need to know.
My point is not to show you that CP kids have a high pain tolerance. Because that’s not always true.
My point is that God is bigger than my pain and my pain tolerance.
And that he can use that to teach me things.
He can use the pain to make me stronger. Physically and spiritually.
My point is that even in your lowest of lows, God can meet you there and he will meet you there, in the smack dab middle of your deepest valley.
And that’s something to celebrate.
I’ll close with one of my signature lines that will hopefully put a smile on your face: the small able-bodied Jordan inside me is doing kart wheels right now she’s so happy.
Fighting pain with a smile, and a Jesus dependency.
March is CP Awareness Month. This post is dedicated to that and to doing my best to raise awareness for how possible a great life is with CP.
Dear Cerebral Palsy,
I’ve spent a lot of time hating you. I’ve spent a lot of time screaming at the people I love just because I didn’t understand you. So really, I’ve spent a lot of time yelling at the people I love over something that had nothing to do with them.
That’s because I’ve let the negatives and hurdles you’ve thrown in my life control me.
I’ve given you a lot of tears. I’m mad at you when I wake up in pain.
I’ve put you on trial more times than I can count.
I’ve wondered if my future isn’t going to be what I want it to be because of you.
I hate how much you knock down my confidence.
I’ve wondered if high school would have been better if you weren’t a part of it.
I wonder what people think when they see or meet me because of you.
I’ve wondered what employers are going to say when I crutch into their office.
I long more than anything to run, and I blame you for the fact that I can’t.
I hate the fact that as a kid, I knew the ins and outs of my PT clinic and orthopedic doctor’s office better than I knew the ins and outs of the playground at school.
The fact that I’ll never play the sports I love so much literally shatters my heart sometimes.
I wonder what my family and friends say to someone before they introduce them to me. Do they warn them that I’m on crutches?
Dear CP, I’ve spent a lot of time hating you.
But not for everything. There is another side to our relationship.
I love you for how you’ve brought horseback into my life. Without you, my horse Concho would not be in my life.
I thank you for what you’ve done to my relationship with my brother. In a strange way, I know that because of you, our relationship is unbreakable. It’s easy to see how much your 21-year-old brother, who has a million better things to do, loves you when he refuses to leave your side in your hardest moments.
When you’re laying in a hospital bed, your body is shaking from all the meds, your leg pain is killing you and you look to your side and see your bother sitting there holding your hand like he has been for the last hour, it’s easy to see that he’ll forever be the ultimate best friend.
I thank you for the way you’ve strengthened my love for both of my parents.
You truly learn the definition of selfless when you try to count how many days your mom has spent on a cot next to you in the hospital.
The definition of love and strength is easy to define when you think of all the times your dad did all he could to make sure your childhood didn’t suffer just because you couldn’t keep up.
All the times he stood in the front yard, kicking the soccer ball back and forth with me and picking me up every time I fell.
I’m thankful for the perspective you’ve given me and how you have deepened my faith.
All the times you tried to knock me down and sometimes succeeded, has allowed me to learn at an early age what it means to truly lean on God.
And our time together has given me a perspective that helps me see what’s actually important and lasting in my life.
So look CP, I know there are still going to be days when I hate you with everything in me.
I know that there’s going to be moments where I let your effects on me really scare me.
I know that you and I are in it for the long haul. I’m well aware that I’ll never shake you.
But I’ve learned that while there’s a lot I hate you for, there’s also a lot I have to thank you for.
And in a strange way, while there’s days I’d do anything not to have you, overall I don’t think I’d change a thing about you and me.
I am the Jordan that I am because of you.
To the girl with a disability in her teens or 20s, who is drowning in the whys and what ifs:
I understand you because I am you.
I get it. This is hard, uncertain and painful. It’s so easy to wonder why this is your life and worry about the future.
It’s easy to be mad and wonder why you are the way you are when you finally work up the guts to go to that social event. But when you get there, you’re just miserable the majority of the time because your body hurts, you can’t keep up with your friends and you’re stuck on the sidelines.
I know how often what ifs about that dream job jump into the center of your attention when you start thinking about life after you graduate college.
And you do your best to not think about high school. Like ever. Because that’s when most of the really painful what ifs and whys started.
The “why does this have to happen to me?” is hard to fight away when you wake up every morning and something on your body hurts.
And oh, do I know that there actually is pain behind the jokes you make with your family that you’re just going to end up as the crazy dog lady.
The “what if I actually do end up alone?” really stings and eats away at you when you are talking to that guy in class. And then the dreaded question comes, yet again. The minute he asks if your crutches are from an injury or if they’re a “permeant gig," and you can’t lie or hide it.
I know how much it hurts when you have to answer with a yes, that those crutches are something you’ll never be able to shake and you can instantly feel him and everyone else around look at you differently.
The why questions grow 10 times bigger and haunt you when you fall in a crowd of people and hear the laughs that some people aren’t even trying to hide.
“What if this never happened to me?” is the worst thing you can ask yourself. Because your mind instantly spins out of control, and it’s really hard to get it back. And the “what if daydreams” are nothing else but painful.
The whys are massive when you walk, wheel, crutch or scoot into a room of people and feel the stares burning through you.
The what ifs are looming and countless when you’re sitting in that doctors’ office time and time again.
I get it. This sucks.
I understand the feeling that some days, you’re not even mad about it anymore. Because you physically, emotionally and mentally can’t yell at God anymore. So instead of being mad, you’re just really, deeply sad about the whole thing.
I get it. It doesn’t make sense.
And I’m not here to explain it to you, because I can’t. I don’t understand why we’re like this either.
I’m also not here to tell you that “it’ll get better.”
Because I know how much that statement can make you want to punch a wall.
People have been telling me that for 6 years, since I was a freshman in high school, fully realizing for the first time that my life was going to be different.
I’d believe them for a minute. But then I found myself a few days ago, as a sophomore in college, sitting on my dorm floor, just sobbing. Not out of anger or spite for my situation, just exhaustion and deep, pure sadness.
I’m not here to tell you when it will “get better” on this earth, because frankly, I don’t know if it will.
And now, I’m going to make one of those statements that might make you want to punch me (it’s okay, I’ve definitely wanted to punch someone when they told me this too.)
I don’t know when or even if “it’ll get better” on this earth. But one day, when our time is up on this earth, you’ll get to run. You’ll be pain-free. You’ll wake up, and things won’t hurt. You won’t be worried about what people think.
I get it. That’s a hopeful statement, but it’s also frustrating.
Because you know that while you’re here, on this earth, it’s going to be rocky. And it’s frustrating because you want that physical healing now. You don’t want to hear about how you’ll get it later.
I want it now too. Trust me. I cried three days ago after spending a weekend with friends, because everything in me wanted nothing more than to have been able to keep up with them and play sports with them this past weekend.
So, I can’t say that this is something that you should read for answers to your whys and what ifs.
Because I don’t have them.
But I do have one answer. And it’s a hard one to completely grasp. I know, because I don’t completely grasp it.
I know, because the girl who was sobbing out of frustration, tiredness and sadness three days ago is the girl who is writing this. And that girl really struggles with this answer sometimes.
“Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.”
What does that mean? It means that if we don’t put our sights on the days we’ll be running in heaven, this life on earth is going to be sad and miserable.
If we don’t focus on our pain-free, eternal days with the Lord, our pain on Earth will be amplified.
Look, again, I get it. This is hard. I struggle with it too.
Right now, this is my life. This pain and struggle is part of me and an obstacle I have to do my best to jump every day. If this is my current situation, how the heck am I supposed to focus on a future one that I can’t even imagine or fully comprehend?
Do it through the hope in the statement.
Don’t look at the frustration in the “but I want it now” that follows the hopeful statement.
If we’re going to conquer these medical conditions that don’t have earthly cures, we can’t do it like that.
Maybe you’re done listening to me because I didn’t give you the answer you wanted.
That’s okay. A few days ago, heck a few hours ago, I didn’t want to hear it either.
All that I’m saying in this post is these things:
You’re not alone. Even if you feel like it.
Yes, this is hard. But you have to keep pushing and clinging to hope.
I don’t have the instant gratification answers that you and I both wish I had.
But I have an eternal answer.
An eternal answer that’s okay to wrestle with. Frankly, I’m wrestling with it as I write this.
But as I’ve learned before, I always walk out of my wrestling matches with God a little wiser.
I’ll let you know how this one turns out.
Here’s charge and point to this post (and know that I’m fighting to learn how to do the same thing):
Do your best to push the whys and what ifs out. Replace them with eternal hope in the one day we will have healed with the Lord.
Stay focused and keep pushing through, and I will too.
One day running,
This post is the second in my blog series, Truthful Identity. If you want to check out the first one, click here.
Ask anyone in my family. Actually, just ask anyone who remotely knows me well. They’ll probably tell you the same thing.
I stress easy.
I overthink everything.
I can spin something that is a really great thing into a really bad thing. Just because it stresses me out.
I build stories in my head about things that haven’t even happened yet.
At certain points in my life, my anxiety has controlled my actions and decisions.
Anxiety can and has controlled my life. And it stems from one thing: I hate the unknown, and I want control.
But as I’ve gone through this journey of facing the lies I believe about myself, I’ve come to the root of the things that stress me out to figure out what they are, and why I let them do what they do to me.
As I dug deep and compared different situations in my life, I came to a really strange realization about the things that I let stress me out.
I took two consistent scenarios in my life and put them side by side. I took all the times I’ve laid on an O.R. table and my school career and looked at them both.
And I can honestly say that I can pinpoint certain times when the stress of school took me to my absolute lowest point, causing freak outs and anxiety galore.
But I couldn’t pinpoint a surgery that ever made me breakdown like my school career has even though I was staring the biggest unknown in its face.
I, for some reason, remember more about my surgeries than I probably should. I remember up to the point when I fall asleep vividly for most of my more recent surgeries. My Grandma, who’s a nurse, says everyone’s different but it could be because of the fact that I’ve gone through so many.
I can remember each of those moments. I remember laying on a table, staring at that big light before they put me asleep. However, I never remembered feeling anxious. I remember feeling sadness and fear as tears leaked down my cheeks but never anxious like I have over schoolwork.
In fact, I remember one time telling some doctors as they walked me through how they were putting me asleep, “This ain’t my first rodeo,” they laughed, and put me asleep.
Last time, I vividly remember crying as I answered the anesthesiologist questions about UF that were an attempt to distract me. But once I was in there and saw Dr. Miller and returned his thumbs up, I was okay.
But why is that? Why is it that I sometimes let something as simple as homework take me to a breaking point, but if you throw me on an O.R. table after a few deep breaths and maybe a thumbs up, I’m okay?
As I thought about it, it baffled me. Surgery is far more significant than an exam or homework assignment. Yet, schoolwork has taken me down more times than a medical challenge.
But as I thought about it more, I figured it out.
On an O.R. table, I’m completely vulnerable. At that point, there is nothing I can do about the situation and I know that. It’s completely in God’s hand; no matter how hard I yank his arm, he can’t and won’t give the situation to me. I also usually have pretty significant prayer support around that moment.
I feel small on an O.R. table, and my only choice is to surrender.
But in school, I feel big. I feel like I can control it. If I spend one more hour studying or one more day looking over this assignment, I can make it better. I don’t need God in my small homework assignment, I’ve got it.
But before I know it, I have raised an exam above everything else in my life, including God. I take school, and map out my own plan and look at my plan like I’ve got it all by myself. And that’s where I lose it.
On an O.R. table, I realize a reality I should realize every day of my life: I am small and I need God. And that’s why I think an O.R. table is a place where I’ve found the most peace in my life.
Because I learned how to surrender there.
But in my everyday life, I’m too worried about my grades, what people will think of me and making sure things going according to my plan.
I put my value in my grades, so I don’t want to give them up to God.
I worry about what people think, so I don’t want God to have control. I want control.
I let myself feel bigger than I am, and my human nature doesn’t feel the need to and frankly, doesn’t want to surrender.
In The Freedom of Self-Forgetfulness Tim Keller writes: “But Paul is saying that in Christianity, the verdict leads to performance. It is not the performance that leads to the verdict…In Christianity, the moment we believe, God imputes Christ’s perfect performance to us as if it were our own, and adopts us into his family.”
I think in my daily life I do two things:
I believe that my performance leads to my verdict. Because I define my “verdict” as what others think of me. The reality check here is: only God’s opinion matters, and my verdict was determined the day he hung from that cross.
And I give myself too much credit. I think I can control things that I can’t, just because their “smaller” than a surgery. Sure, I can try my best at an exam or an assignment. But when I turn it in, it’s out of my hands. Ultimately, I can’t control it.
At the start of this semester, I told myself to live with more perspective and surrender. Perspective that I am a sinner and I am small. I can’t live up to my expectations or anyone else’s, so I need to live only for God’s opinion of me and God’s opinion is already formed.
Surrender in the fact that my plan is already mapped out for me.
But perspective in that surrendering doesn’t mean I don’t try.
This first week already, I have found so much freedom in just doing my best and not stressing, because I know God’s got the plan mapped out.
Before I jump into this post and as another shout out to my Delaware crew, the Therapeutic Technician at the rehab gym that I spent my summer in, Jason Fehrle, is running the Disney Princess Half Marathon in February to raise money for Nemours and a new Child Life Center at the A.I. duPont location. I hope that most of my posts on From 3West point to how incredible Nemours and A.I. duPont are. If you feel led to check it out, donate to or share his cause, please click here. I’ll say it a million more times – A.I. duPont is an very special place full of really cool people. This is a clear testament to that.
On June 11, 2017, I posted probably the most important letter I’ve ever written in regards to how and why I started From 3West.
I remember laying on the downstairs bed, where I was camping out while I continued recovering from surgery, and typing through my tears as I reflected on that past month and all that had changed in my life.
I posted Dear Nemours, hoping just a few people I was trying to thank might see it.
As I sit here 6 months later, returning home two weeks ago from one last Delaware checkup, I feel like I’m in such a familiar spot. But if it’s even possible, my gratitude for Nemours has grown from that afternoon in June.
Two weeks ago, as my mom and I sat in the exam room alone for a few minutes and she leaned down to help me put on my shoes, when she looked back up and we made eye contact, tears started streaming down both of our faces.
I hugged Dr. Miller one more time and did my best to hide the fact that there was a lump in my throat.
My mom and I walked the halls of the hospital, smiling and laughing as we shared our memories of living there for a month with my brother and my dad.
We saw my two friends who had surgery on the same day as me this summer, Ryan and Courtney.
The three of us proceeded to walk around the hospital and the rehab gym, saying hi to everyone we could find from last summer.
It was one of the most bittersweet moments of my life. Because I knew that it was probably my last time walking the halls of the hospital that turned my life around, as a patient.
But on the plane ride home, it really hit me. The end of that previous sentence, “as a patient,” screams possibility.
Okay, I’ve probably lost you. Let me explain.
Clarity. I think it’s one of those things that everyone wants, but sometimes it’s hard to grasp. It’s something I’ve been praying hard for since the start of this semester.
When I started at UF last year, my plan was to go into the sports industry. Telling stories of the greatest athletes, the most passionate fans and the most inspiring situations on and off the field.
But as I got into UF’s sports media program, something in me often felt off. And as I learned more about the sports industry, I realized that my passion was really just about telling stories, sports or otherwise.
So in the summer, switched my major from Sports Journalism to Media and Society Telecommunications. A track that would still allow me to pursue sports if I wanted but was open enough to allow me to check out other avenues as well. I was confused because in a sense, my original plan was obliterated and I didn’t tell anyone at the time, but my sports centered dreams felt kind of like they were slipping away from me.
Since I started this journey with From 3West, I don’t think I realized how much storytelling became my focus. My focus has become telling my story and stories of kids like me who struggle medically.
The Articles tab on my blog got dusty this past semester as I stepped away from sports, just to see how it felt.
And let me tell you, writing freely, working for myself and sharing others’ stories that are similar to mine has been the most refreshing, exciting feeling I’d had in a while.
I walked into this last Delaware trip expecting to see some of my favorite people, make a plan for the future and wish a great man a happy retirement. That’s it.
But I got oh, so much more.
I got clarity.
I realized that maybe I am being called to a sports field to tell stories… but lately, every bone in my body is saying maybe I’m not.
As I walked down the blue checkered floor of the hall where I’ve cried the saddest and happiest tears these past 4 years, when I gave the man who changed my life the most earnest thank you and when I looked at my mom’s face and saw a woman who has been just as beaten up by all of this as I have, I realized maybe, just maybe, I’m being called into the environment I’ve been in my entire life.
Maybe the special needs community needs me to stick around and tell their stories.
In a few years, maybe a worried mom in a waiting room will need some hope for her kid who is in the O.R.
Maybe the high school girl on crutches who truly just realized that this is her life, will see me walking a hospital’s hall and get a glimpse that life like “this” will be okay and can be great.
My Gator-fanatic of a grandpa is a huge reason why I am who I am and why I do what I do. He lost his battle to cancer years ago, but he taught me what it means to fight. And that even when this medically challenged world starts to look really dark, there’s always something to smile about.
Maybe my grandpa needs me to take some kid’s hand who just got dealt some of the most unfair cards life has to offer, and show them that lesson too.
Maybe the sports fanatic kids who are walking into a hospital or therapy clinic instead of a sports field like I was, need to see that there’s still so much joy you can find in the game, even when you can’t play.
Maybe they need to learn how your PT gym can easily become your field or court, and this crazy medical world is actually often full of the best teammates.
This trip gave me pretty strong clarity that maybe the athletes and passionate fans can wait.
Maybe, they’re not in my cards.
Maybe this world I’ve already been living in, the healthcare and medically challenged world, is the one I need to go tell stories in.
That’s why the last part of that earlier sentence, “as a patient,” screams possibility. Because maybe I will walk those halls again, but as someone else.
There’s so much comfort in clarity and so much possibility in a maybe.
Changing paths is scary. But God’s call and clarity are really cool things to feel.
I’m actually excited to put my sports centered dreams on the back burner this semester and explore how I can find my calling in this world I already have a perspective in. And explore how my sports centered dreams and these dreams can overlap sometimes.
I’ll end this one with two things.
First, yet another whole-hearted thank you to my Delaware crew. Because without Dr. Miller, everyone in that rehab gym, each and every one of my nurses and everyone else who helped me in these past 4 years with Nemours, I don’t think I would be realizing my dreams.
And without you guys, I don’t think I’d have the guts to chase them either.
Secondly, I’m nervous out of my mind thinking about this change in my focus. But I’m also excited. Like, really excited.
I’m in the process of getting ready to reach out to different amazing places like the Tim Tebow Foundation and even Nemours to see if they need a communications or marketing intern this summer.
But if there’s anything I’ve learned in the ride from confusion to clarity, it’s that God’s plan is amazing.
So, I take comfort in the fact that I believe he’ll take me somewhere really cool this next semester and this summer.
Even if that’s just back here, working, writing and blogging.
As long as I’m telling meaningful stories, I’ll be good.
Related Posts: Dear Nemours, Ryan's Story, Courtney's Story