It’s a recurring scene in my life.
I’m talking to my dad, explaining some situation I’m dealing with. After I air it all out, I’ll probably sigh heavily and look at him as he’s suppressing a smirk.
“Don’t say it!” I’ll say in a desperate tone, with a small laugh behind it.
To which he’ll respond with something like: “Okay, Lisa,” or “You’re just like your mother.”
I’ll probably roll my eyes and deny it. Even though I know it’s true and even though secretly, I’m glad it’s true. Because my mom is a pretty great person to be like.
What’s true about both of us is that we’re fixers. We see a problem, and we immediately want to make it better.
We can’t sit still when there’s something wrong. We’d both probably yell at you and stomp our foot if you called either of us a perfectionist (apparently, Mom’s foot stomp became famous in college, and there’s a reason why I can imitate it perfectly for all of their college friends).
But even though we’ll look at you like you’re crazy, we know you’re right. The idea of us not being able to help or fix something drives us nuts.
I think I am not alone in saying 2020 has been a challenging year.
I’ve watched some of my best friends graduate with no physical graduation and what seemed like, little to no actual closure on their college years.
I went home for a weekend in March, thinking I’d be back to Gainesville in a few days and instead, sat at home for six months.
In those six months, I sat with my family at our dinner table night after night, the news often playing in the background. We began to have conversations that we should have started having a long time ago.
Then in June, I received personal news that completely hit me out of left field. While I’m normally a completely open book, this is something I don’t feel like I have to or should give all the details of, on my blog.
Just know that it’s the type of news I think probably no girl wants to get. It forced me to think of parts of my future I wasn’t thinking about, it riddled me with uncertainty, fired up a lot of doubts and left me so confused. And frankly months later, I’m still sitting in the middle of all of that.
In the middle of June, I reflected on the past few months, and I was filled with confusion, about so many things.
On a personal level, I looked at my doctor as she told me nothing anyone did would completely fix the thing that was just added to my life. She could help, but she couldn’t totally fix it.
I feel broken.
On a bigger level, I looked at my TV and wondered how our world got to where it is in 2020. I wondered how anyone could look at everything that is happening and say that change wasn’t needed.
I thought of how abruptly our school year ended. All the “lasts” some of my friends didn’t get to have. All the goodbyes I had to say that felt like they came too soon, and all the ones I didn’t get to say.
The world feels unfair.
This summer, I wrote my family a letter, after they all begged me to share where my head was at with all my personal stuff going on. I process better by writing (obviously, we’re here aren’t we?), so I told them I couldn’t talk about the ways the news I got was affecting me, but I’d write them.
In it, I told them: “This new medical junk added to my CP has truly made me feel more flawed and broken than I ever have felt. I can’t really explain why.”
As I re-read the letter recently, that sentence and what came next stuck out to me. I explained to them that I keep reminding myself that we’re all broken.
The world feels unfair, I feel broken.
The world is unfair, I know I’m broken.
The world is unfair because it’s broken.
We’re broken because that’s what being human means.
It all needs to be fixed. And none of us can completely fix it.
Since being back at school, I’ve prayed that first line I just wrote countless times:
The world feels unfair, I feel broken.
My hope was that God would get back to me with a playbook that said: “J, you can do this and this and that to fix this part of your life. The next page is exactly where I’m taking you. Flip a few more pages, and this is where the world will be next, and this is how I’m going to fix it.”
Unfortunately, God didn’t hand me an entire playbook like he was Coach Taylor and I was Matt Saracen (yes, I am re-watching Friday Night Lights all the way through for maybe the fifth time. This is my formal apology to all my friends for the ugly selfies I’ve sent you every time the show has still made me sob).
He did get back to me though, with one single play. And frankly, at first glance, I hated it.
His play had me doing one thing:
As I heard that the first time, I ignored it.
But then a friend of mine texted me that Exodus 14:14 was comforting her.
A few weeks later, guess what verse randomly popped up on my phone in a notification?
“The Lord will fight for you; you need only to be still.”
And I said: oof.
So, I prayed it one more time:
Lord, the world feels unfair, I feel broken. The world is unfair, I know I’m broken. The world is unfair because it’s broken. We’re broken because I guess that’s what being human means. It all needs to be fixed. But none of us can completely fix it.
Then I realized I needed to go further:
My doctors can’t fix me, and humans can’t fix the world.
None of us will be completely fixed in this life, and as long as we’re here, this world is going to be broken.
But someone else has already been fighting for us, before we even knew there was a fight. Someone else has already won.
Our only job is to know that He is fighting, He is just and He has won.
He’s got a playbook.
We just have to make that known. Because it’s the only way our world will change.
When I first thought God was telling me to be still, I thought it meant to do nothing, and that’s why I didn’t like it. But as I’ve prayed through it, I don’t think that’s what it means.
I believe it means this:
Be still. Be still in surrender. Find surrender in the fact that you are human, you’re small and you can only do so much. Even so, you are loved by a King.
Do what you can: hold your neighbor’s hand in their fight. Talk about hard things. Love difficult people. Learn that setting boundaries is okay. But make sure you forgive. Hug your mom, because you’re probably just like her.
Stand up for yourself and for others. Admit your mistakes. Allow yourself and others to change and grow. Talk about grace, and a mighty God that is the one answer to all things.
But then, be still. Be still and squint your eyes if you have to. Be still and focus on the light that’s not just at the end of this year that nobody was buckled up for, but the light that is at the end of this side of Heaven.
The world feels unfair, I feel broken.
The world is unfair, I know I’m broken.
But I’m free and you’re free. To simultaneously not be okay with the way things are, and yet rejoice.
Because the playbook’s written. It’s done.
I don’t have all the answers, and neither do you. But our coach does.
Right now, it feels like we’re in a game in the middle of a downpour. You and I, we’re jumping up and down on the field, trying to get a better glimpse of him.
In a timeout, I look at him like he’s crazy, because the play he called makes no sense to me. You back me up and remind him that I have awful eyesight (I really do), and that I can’t make the play. I’m a little offended, but I agree and admit that I also lost a contact lens on the field (guaranteed that would happen to me).
To which, he just smiles and puts one hand on my shoulder and the other on yours.
“Lucky for you, I have 20/20 vision. I can see the whole field. The game’s over. All you have to do is trust me.”
I’m unsure, and you are too. But if there’s anyone we trust, it’s him. In the midst of a downpour, even when I’m going back into the game, half blind.
We do what we can, and we trust his playbook. Because we know that we aren’t going to be in this game forever. We trust he’ll lead us out of this, to something better.
All we have to do is be still. Not a do nothing be still. A faithful be still.
A be still that says: “I’ll listen, do what I can, realizing I can’t fix this. I trust your playbook is unmatched. I feel broken. But my anticipation to see the outcome you will lead us to is bigger. So, I’ll be still.”
Dad gave me one line that’s been in his head lately:
Eden is ahead of us, not behind us.
With that in mind, be still.
It’s mostly a mental game at this point. I know how to strength train. The hard part is training my brain.
When I’m really trying to walk well, I think about each step. I think about each muscle that’s firing and whether it’s the right one.
At the beginning of this year, I looked at some of my friends and even though I was doubting it in my mind, I said: “2020 is the year of no crutches. I’m calling it.”
Of course, they fully jumped behind me in support. But I realized what I said, and immediately jumped back. “Wait no. What am I saying? None of my doctors think I’ll ever be off of my crutches. I was joking.” I smiled nervously and looked down, a little defeated at the thought of ditching my crutches.
This week, I stood in my garage and thought back to that moment.
What if I could? Or at least ditch them for some distance? Or move to just one crutch?
I’ve proved people wrong before, haven’t I?
I was scared at the thought, though. Mostly of getting my hopes up, only to fail or realize it’s just not in the cards.
But I reminded myself that’s a dumb reason.
Why not just try? If I give “No Crutches 2020” as my friends dubbed it, a fighting chance, if nothing else, I’ll at least come out stronger.
Standing in my garage, I started to map it out.
I need a little more strength, endurance, a lot more balance, and even more practice.
Strength? Easy, that’s what I’ve been doing. The rower, weights, bike and core work.
Endurance? Gross. But necessary. Lots of walking.
Balance? The fun part. AKA the boxing bag in our garage.
And then of course, lots of practice walking. With my crutches though.
I told my dad that if I was going to get rid of them, I have to master them first and he agreed.
So, why am I writing this on my blog?
A few reasons.
One being, I need accountability. I need my Orlando friends and family to hold me to working hard and walking lots. If anyone wants a quarantine walking buddy, please make me come with you. For real.
But another reason is that as I’ve lived with Cerebral Palsy (CP), a physical disability, I’ve learned just how imperative gym/physical therapy time is for someone with a physical disability.
And I think reading something like this when I was younger, seeing how someone else is dealing with CP, would’ve made a huge difference for me.
Hearing someone else with a disability say these things would’ve motivated a younger me:
I’m in your shoes, and I’m going to make the argument that working out and doing whatever you can to get better, is even more important for us.
Of course, each of our situations are vastly different. And working to get better will look different for each of us.
But the importance is the same.
To the kid with chronic pain, I am you. Trust me when I say the gym actually helps.
To the kid trying out a new form of mobility device, start slow. Focus on the small things first, and the big things will come faster.
To the kid thinking there is no way they can get better than their current situation, I’ll tell you what I’m telling myself. Just try. Take the small victories.
Saying you tried is better than nothing.
Listen to doctors, but don’t take their word as the end all be all.
Don’t listen to the negative thoughts or negative things people are saying. If I did, I wouldn’t be living independently, writing you this.
I vowed last time I was in the hospital, when I actually started this blog, I would always try to go a little farther than I thought I could.
That’s what I’m doing and hoping it can also encourage all my other pals with disabilities to do the same.
Have a big goal in mind, but just try to go a little farther each day.
Doing that got me to college independently, off my 3West hospital floor faster than planned, on crutches again and now hopefully off of them to some extent.
Right now, I’ll just be pretending I’m Rocky Balboa in my garage and then walking all around Orlando.
Hold onto the independence you do have, tight. And then fight for more.
You never know what could happen.
That’s what pushes me. Dreaming of what could happen.
Be brave, just try, dream big and celebrate every victory.
“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us…”
To the girl with a disability:
I’ve written you before when I was struggling, because I thought you might be struggling too.
Well, I have some more thoughts.
I don’t know about you, but one of the biggest insecurities I’ve had to fight is the idea that I stand out.
That when people see me, they only see my crutches.
They don’t see the fact I’m in college and doing well.
Or the fact I live completely on my own, I can travel on my own, I drive a car and do most of the things they do.
They just see my crutches, and the fact that I’m “different”.
The other day, a boy walked up to me and told me my crutches and my scooter make me “stand out”.
Before I go any further, let me clarify a few things.
I know this person probably was trying to relate, perhaps even be encouraging. There is even a chance he’s reading this. So, I need him to know that I am not mad or hurt anymore. I have many years of practice processing stuff like this, and that’s why I’m writing this. Because I wish I had something to read or someone to relate to when I was growing up trying to figure out how to process life with a disability.
This is for the next girl. Who has a disability and just got told a similar thing.
So, to the girl with a disability who’s struggling with the idea that people think she stands out, I’m sitting down right next to you.
This idea of “standing out” because we have a physical challenge, just plain sucks.
Because, I can’t really say it’s not true. I know my brightly colored crutches make me noticeable. And when someone points it out for no good reason, it’s just a painful reminder.
When a group of mean girls said stuff to me in the past, it made me angry, but sometimes it’s easier to stand up to them or just to forget it. Because I can call the girls who I know care about me, laugh and move on.
But the few times, like the other day, when a guy decides to point it out to me, it’s different. It stings a little more.
Even though I know the guy who said this to me didn’t have ill-intent, it still sent my mind into a spiral later. As a girl with a disability who has wrestled with this idea of standing out and her disability being her only defining trait to other people, when any guy says something, it’s easy to believe that’s what all the guys in your life have thought.
I have other girl friends who have a disability, and we’ve talked about it. I think we have all been in similar places.
What I’m about to talk to you about is something I hate discussing. Truly.
Do I joke about it? Yes. A lot. But rarely do I talk about what actually goes on in my head surrounding this.
I hate writing about this, but when I was growing up, I wish I had someone in my life that could relate to my situation. I hate writing this. But I don’t want another girl to sit in her room, while she’s in high school or even college, torturing herself over this. Wondering if anyone else gets it.
To that girl, I get it. Trust me.
To that girl wondering if every guy sees just her disability and if it is going to be the reason she turns out to be the crazy dog lady, I’m here to give you my two cents and 22 years of living this.
I wish I could tell you that none of that is true. I wish I could tell you that your disability has nothing to do with why you’ve maybe never been on a date.
But I am not naïve enough to think that. I think yes, it has probably played a factor for you and me. Am I saying it is the whole reason? No, absolutely not. We play a part in this too.
High school me was so quiet. Even now, I’m a little on the quieter side. And that was a reason making friends was hard for me for a long time.
What I’m saying is relationships, any kind, are a two-way street. Our disability probably has scared some people off to some extent, but I know for myself, I just avoided guys and people in general for years. Because I didn’t want any rejection on any level.
So first, I want you and I to be aware and real with ourselves: not everyone knows how to act around someone with a disability, and we need to all work together to change that. But also, you can’t, and you shouldn’t blame everything particularly in this aspect of life, on just your disability or on other people.
Hear me when I say: I know for a fact, a fact, that every guy does not see you for just your disability. I mean that.
Read that sentence again. And please believe me. I have guy friends who I love and trust who have confirmed it for me. Your disability does not count you out. So, the next thing I want to tell you is, do me a favor, and don’t close yourself off.
I did for a very long time. I convinced myself that dating, marriage and even just having any good friends, was not in the cards for me. Because I am different, I thought my crutches were all people saw and I have fought the idea that I am a burden to people, my entire life.
For those years I was closed off, I undoubtably made friendships harder for myself, let alone something deeper.
You won’t know what the Lord has for you if you’re shut down.
The year I truly opened myself up, I found an incredible group of friends. So, this isn’t just about dating. I know it can be easy for you to even close yourself off to having a solid community. I’ve done it. Don’t do it.
But to that point of dating and guys, hear this next part and know that while this has taken me a long time to get to, I’m serious.
I am thankful to be a master 3rd wheel and for my very single singleness of 22 years.
No, like for real. Again, I was not always in this place, but hear me out now.
As a girl with a disability, I have been down the rabbit hole of wondering about the future time and time again, wrestling with how much my disability affects others’ view of me.
But over the past four or five years, I have learned how much of a blessing is found in the fact that I’ve never dated. And here’s what I’ve got for you:
I’ve sat with friends who just had their heart broken and then had to start over, with no clue how to be alone.
If you’re like me, you’ve never had that happen. You could hear that and say: “Jordan, that means you’ve never been in a relationship, and that is what I’m afraid of.”
Perspective is important, so let me give you my reality, that could be very similar to yours.
I’ve never been in a dating relationship. And my disability has played a part in that. I have had one really hurtful situation in my life that would’ve been 10 times worse if I was actually dating the guy.
Looking at that and what I’ve seen friends go through, please hear me when I say you’ve probably been saved from a lot of pain that other girls have had to go through.
The second part of this is, as cliché as it sounds, is that I’ve had 22 years to figure out who I, by myself, am.
I’ve had 22 years to figure out what’s important to me and what my identity is.
And sure, in certain moments it has been and is hard. Like in high school, for instance, when everyone was going to Homecoming and I wasn’t. Or now in college, when it feels like weekly, my Facebook feed is full of new engagement and wedding posts.
But looking back now, I’ve had time to learn what is actually important. In high school, I was never distracted by pointless drama or other junk that would be gone in a few years. And these years in college, I’ve been able figure out all these things I’m about to tell you about myself, and more.
In my 22 years, this is what the spiral of “My CP is the reason I will be single forever” have taught me:
First, that saying relationships can’t happen for someone with a disability isn’t true. Someone could come along, and everything that happens for any other girl could happen to me.
But second, if it doesn’t, I have intentionally used this time to be okay with that. Truly. I am.
Because I know these things about myself:
I am a daughter of a King, who has a plan for my life that is far greater than anything I can dream of. Married or single, His plan is epic for me.
I am a sister and a daughter to my brother and parents. And every day, I can learn how to be better to them in some way.
I am a friend who loves deeply. And every day, I can find true joy in being there for people who have been there for me.
I am a writer, who has big dreams that will hopefully sit on bookstore shelves.
I am a voice for the community of kids and people with medical challenges, and I do not take that lightly.
I am a dog lover, sports fanatic, coffee addict and horseback rider.
I am a loud laugher and complete goofball around the people I love.
I am someone with plenty of embarrassing nicknames.
I love a good story. I mean like really love a good story. On the big screen or on pages, I’m here for stories.
I am a Ben and Jerry’s aficionado, and I will die if I ever get to go to The Tonight Show starring Jimmy Fallon.
There are so many other things I’ve learned about myself. Really.
But more than anything, I am confident, deeply confident, in the first thing I told you. I know how to have and what it means to have a relationship with Jesus. I am dependent on it and fulfilled by it.
To that girl wondering if every guy sees her just for her disability and if it is going to be the reason she turns out to be the single, crazy dog lady, here’s what you need to know and do.
Your disability doesn’t count you out. He could come along. You could be the one your friends are standing with on your big day instead of you only standing with them on theirs.
But you have to do two things.
Open yourself up to people, and learn who you are.
Because if you don’t do those things, especially the latter, you’re doing what you’re afraid of other people doing. You’re only seeing yourself for your disability.
The world tells you that this one aspect of life is everything. It’s not.
You’ll be okay with or without it. Just know who you are.
Make your list of things, like the one I just wrote to you about myself.
So that, no matter what, you can stand with that. Knowing your purpose and your identity.
Because you do stand out.
But guess what? The thing that makes you stand out is not all of you, and it’s not a bad thing.
Be intentional with your time, don’t listen to the lies or the world.
When you do those things, life gets a lot sweeter. I promise.
It was the holiday season. Our house was full of a loud and chaotic family.
Everyone was in our living room, talking over each other and laughing. Our family isn’t a quiet one.
I was 10 years old at the time. I was sitting on the floor, not really present in the chaos around me. I was focused on watching him watch everyone else. Even at that young of an age, I understood what was happening.
His face wasn’t sad, but his eyes drooped a little. His smile was tired, but genuine. He just seemed to be taking it all in. Silently observing and impressing every scream, laugh and voice into his mind.
Being that young, I probably shouldn’t have understood what was going on as well as I did.
But I’ll never forget the feeling I had, just knowing that this time was special. And looking at his face, I could tell we were thinking the same thing.
I remember climbing into his lap at some point that night to the familiar exchange we often shared.
“Pea Pod, who’s my number one?”
I looked up at his face smiling, “Me!”
“You always will be. Don’t forget it.”
Every time he called me his number one, which was with every hello, goodbye and lots of moments in between, I’m pretty sure he was meaning granddaughter. Because I was his lone girl in a pack of boys. And I know he loved all of us deeply and equally.
But to me, especially now, that exchange had even more meaning. And I like to think it did for him too.
I like to think it was a part of our bond and how it wasn’t any more than the others he had with the boys; ours was just different.
Because he knew he had to teach me how to fight, and I knew he was the one I was going to learn from.
A month after that Christmas, I was sitting in a church pew. I was clutching the stuffed alligator he gave me years prior, staring at my dad who was standing in front of everyone.
I squeezed Albert the Alligator just a little tighter as Dad said my name.
“When I think of George as a grandfather, I think about his relationship with my daughter, Jordan. Both of them have had their medical challenges, and there is a connection between those two that is absolutely unbreakable and one of the deepest I know of.”
Sitting there, I felt numb. I was in a fog. But even so, I remember so vividly, my mind shooting back to that moment during that last Christmas.
The loud chaotic scene in the middle of my living room.
The moment the two of us locked eyes and he smiled.
The moments my tiny, tired and broken body rested on his chest, and his arms pulled me into his big, tired and broken body a little tighter.
The way my dad described my relationship with my grandpa a month after that night in the middle of our insane family’s holiday season, was spot on.
Papa and I, we were unbreakable.
We were unbreakable because we were a team.
Every day, both of us had a fight nobody else in our family had.
Both of our bodies were fighting against us.
He was sick, as cancer attacked his body every year that I knew him. My bones and joints are flawed, and every day of my life, including every day of my childhood, has been marked with physical pain, and a body that just doesn’t want to work most days.
Though we were facing vastly different fights, there was something about fighting together.
When my little hand rested in his huge one, canes clutched in each of our opposite hands, we stood in front of our worlds, just a little stronger.
We were unbreakable because we just got it. We got each other.
Truly, nobody understood me better than that man.
As I think about it now, sometimes we didn’t even need words.
Sometimes it was just a smile. Sometimes a thumbs up. Sometimes just a look.
In some moments, I’d face him, standing on my knees, on top of his sitting legs, both of my hands on his shoulders. I’d get my face close to his, staring at his one real eye and one fake eye. Sometimes in these moments, he’d make a goofy face and we’d laugh. Sometimes we’d just look at each other.
A few times I cried, falling into his arms.
Because I knew he just knew. And he knew that I just knew.
We were fighting our challenges. As hard as we could.
Together, we were figuring each day out, but it was hard.
We were unbreakable because he made me into who I am.
Everything I know about dealing with medical challenges, I know from him.
He taught me that a medical challenge is only part of my story.
He taught me that smiling is important. Even, maybe especially, when it’s hard.
He taught me how to be truly joyful. Whether it was us hiding from Mom and Grandma while we shoved candy into our mouths, sitting on the beach watching pelicans dive into the ocean, fishing on the dock or breaking all of Grandma’s rules, Papa taught me how to find the good stuff in everything.
He kept me laughing and made me smile until my cheeks hurt.
He taught me that everyone is battling something. And each battle is unique.
He taught me that while it can feel lonely because I’m the only one physically inside my broken body, I’m not alone. I have an army behind me, as did he.
I have an army of six boy cousins, one brother, two crazy aunts, one rockstar grandma and two incredible parents.
He taught me that being strong is a full-time job. But by the same token, leaning on that army of people and letting them fight with and for me sometimes, is good. And necessary.
He taught me to love the Florida Gators fiercely.
He taught me to not focus on the pain. To push through. Even when every inch of me hurts, he taught me to still keep going. Even when every inch of me hurts, I don’t have to show it. And sometimes, it’s better not to.
Again, reminding me that life is still good, and pain shouldn’t take that from us.
He taught me the power of a good nap, the healing in a giant bowl of ice cream and the magic in a Jimmy Buffett CD.
He actively showed me how to be faithful and grounded. How to hold onto the fact that Jesus somehow has a purpose in this. The sicker he got, the more his faith grew.
The thing is, Papa was my best friend.
He was a fighter. So, I took notes and learned how to be one too.
George Polk was the center and glue of our family.
If I’m brutally honest, him being gone has not gotten easier, at least for me.
12 years later, I think about him every day, and every year of my life with more and more happening, I selfishly wish more and more that he was still here.
Every Christmas, I think about that last one with him.
This time of year is hard for my family.
Things are different, as are we.
Papa was our center. He was the one who pulled everyone together, the one everyone gravitated towards. Now, we’re older and all going different directions.
Now, it’s a little quieter. Even 12 years later, the void is huge.
While we still find lots of joy, it’s still hard.
Because cancer just sucks, this world doesn’t make sense and we want our Papa back.
Learning to cope with that has been difficult. Like I said, I think about him every day and that one last Christmas we had with him, every year.
I know lots of people have similar situations.
That one person is gone. The void is gapping, and it feels just a little bigger during the holidays.
I don’t have answers for it. I wish I did.
I guess this is more a post to let those in similar situations know, you’re not alone.
And it’s a post for Papa.
Papa, we’re smiling. We’re doing our best to make you proud.
Laura, Mom and Amy are still sticking together, bickering sometimes, but still sticking together. Grandma is still worrying too much but laughing even more. Dad has fully adopted your scream that was just for the Gators. And I’m still bossing the boys around, and they’re still not listening.
We miss you every day. It still hurts, a lot, and I don’t think it ever will stop.
Your impact was deep and lasting.
Your stories live on.
We’re growing up, but we’re together as much as we can be.
You told Dad to make sure none of us forgot you. Trust me. You haven’t been forgotten. By any of us.
We think about the pirate patch you’re probably wearing in Heaven, even though you don’t need one anymore.
And while our tears still exist, we’re rejoicing in that.
We’re rejoicing in no more cancer, and the way you shaped us.
Papa. You’re my number one.
And you always will be. I promise.
Don’t forget it.
I haven’t. And I never will.
Here’s the thing. Your life is your story.
You get one life on this earth, and one story.
I wish I could tell you it’ll be easy.
The thing is, parts of it are going to be hard. They are hard. And probably will be for your whole life.
Parts have been for me. Some parts of my life and yours, they'll never not be hard.
But the thing is, even with that, I wouldn’t change it.
I wouldn’t. Really, truly, I wouldn’t change my life.
I’m not going to lump us into one general category, because I understand probably better than most that everyone’s story is different. That’s partly why I’m writing this.
I won’t lump you in and say you shouldn’t want that challenge in your life to disappear either. Maybe you would get rid of it if given the chance. And that’s okay. That’s completely valid.
But the thing is, some things you just can’t change.
So, that’s why I’m writing you this.
So, maybe you won’t fall into the trap of wanting to change things you can’t. Maybe you can rest and see good in it.
To the kid with the medical challenge: this life you’re living is your story. It is a worthy story and I promise, it’s a good one. But here’s some things to keep in mind.
People will look at you different. That’s just a fact.
The important thing to realize is that while some people will look at you different, not everyone will.
There’ll be people along your path who won’t. They’ll see you for you, and not identify you by that thing you’re fighting.
So, find them and hold onto them. Be honest with them, because they can help you carry this.
While they may not know what it’s like, they can still help you through it.
You’re probably going to wonder a lot. Wonder how this is going to affect you. How deeply it’ll touch every aspect of your life.
When you get out of high school, the first thing that’ll probably hit you is what independence will look like for the rest of your life.
You’ll find your version of independence. And then life will just keep coming.
You’ll want to do things that you just can’t. You’ll want to keep up with everyone else. And sometimes, you won’t be able to.
You’ll try to fit down the same path, but you won’t fit. You’ll end up doing things your own way.
That one person next to you will get that job. And you’ll wonder if this medical stuff you’ve got will hold you back and keep you from your dreams.
You’ll watch your friend get the ring. And you’ll wonder if that’s even in your cards. You’ll wonder if this disability or whatever it is, will make this aspect of your life different too.
Because people look at you different.
And at this point, you’re fully aware of it.
People will make assumptions. People won’t know how to handle or react to things you deal with daily.
People will want to fix things for you that they can’t. People will be unaware, and even some of the most well-intentioned actions will sting.
Because this is your story, and yours alone. So really, they couldn’t know.
But here’s the thing.
That’s my point. This is your life, and it’s a story.
Your life, meaning that nobody else will live this. And story, meaning that it’s complex.
Every story has lots of parts.
Climaxes, drops, ups and plateaus. Every single story in the history of the world has those.
But nobody has your specific ones.
There will be some parts of it that you can change.
But some that you can’t.
Recently in my life, I’ve had people assume that I want to change this disability I live with.
They’ve been well-intentioned, but bold.
They’ve made assumptions based on my outward appearance, without knowing my full story.
My story is this:
Life with Cerebral Palsy (CP) is hard. But still good. Really good. And I would not change the life I live. Because I have walked next to God in all of it.
I’ve wrestled with Him about it and prayed more than you know.
And through that, a long time ago, I realized that this was probably it.
Am I saying He couldn’t take this away or heal me? No. I fully believe my God could snap His fingers and make me run pain-free if He wanted to.
But right now, I don’t believe that is His will for me on Earth. I believe that He made me this way for a reason. He has and continues to use this medical challenge in my life, for so much good.
Have there been days where I have been completely defeated by it? Yes. Absolutely. Hear me when I say there have been many days where I would do anything to not be like this.
But ultimately, I come back at the end of the day and I realize.
That the thing is, this is my story.
CP is not who I am, but it is part of me.
And it’s a part I cannot change.
So, I choose to rejoice in it.
I don’t know about you, but I love a good story.
Yours and mine? They’re messy. But they’re good ones, that are only getting better.
The thing is, this life you're living, it’s your story.
Write the parts you can. Rest in the parts you can’t.
Spoiler alert: the Author of it is kinda the best in the business.
The thing is, this is your story, in His plan.
Beginning, middle and end, don’t resent any part of it. It’s all you’ve got. And it’s good. So good.
“Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.”
Hebrews 12:1-2 ESV
“Are you looking for a seat?” An older man stood up as I wandered O’Hare and gestured to the seat he was sitting in.
“Oh, no sir, thank you though. I’m just going to buy a water.” I pointed with my head to the convenience stand behind me.
He looked at me a little puzzled. “Are you traveling alone?”
“Yes sir, I am.” I watched as his eyes met my teal crutches.
Completely innocently, he asked, “How do you do it?”
I smiled. “To be honest, it’s my first time traveling alone,” I shrugged a little, “I decided a long time ago that I was just going figure stuff out if I wanted to do something. So, I guess I’m just figuring it out.”
A small smile crept onto his face. “Good for you.”
“Thank you.” I returned his smile.
“Have a good one!” His smile got bigger as I told him to do the same and spun on my heels.
Little did I know, just figuring stuff out would describe that day, perfectly.
This summer, I hopped on a plane alone for the first time to go visit some of my best friends in Illinois. My flight there was easy and smooth, and the week with them flew by (no pun intended).
Coming home though, turned out not to be that easy. Coming home, pretty much everything you can think of going wrong in travel, went wrong for me.
First, my bag got pulled in security. (Thanks to Bananagrams?)
Then, my flight got canceled.
Then, I found out there was no flights until the next day and the airline wouldn’t give me a hotel because my flight was canceled due to weather.
After sitting on a frustrating phone call with the airline, the overwhelmed guy behind the gate desk whom I already bothered once, pointed me to the customer service line.
My eyes followed the line he showed me and suddenly, they filled with tears. As I walked and walked and walked, realizing the line extended from gate 6 to gate 12, I broke down.
Yes. Right there. In the middle of the airport. I called my dad and sobbed.
People definitely stared. But at that point, I didn’t care.
I cried, talking things through with Dad, wishing the old man was there with his empty seat now. I do not recommend crying (okay sobbing), with a heavy backpack on, while on the phone and walking with crutches.
My friend’s parents are saints and ended up driving an hour back to the airport to get me and take me there again the next morning.
But while I waited for them, I needed to find my bag. So, I went back to the gate desk. The guy looked even more annoyed as I listened to another guy blame the gate desk worker for his phone not working and sending him a text that the flight was canceled.
I took a deep breath, finally not really crying and stepped up to the desk. He definitely looked annoyed that I was backed for a third time.
Putting on my nicest voice, I said: “Hi, I know my flight is canceled and I’m trying to get on another one, but I am staying here for the night. I just need wheelchair assistance to baggage claim so I can find my bag.” He said he’d call for one and told me to sit in chairs to the right.
20 minutes passed. Still no wheelchair.
I felt more tears coming.
Right as I was getting ready to go find someone again, a massive dude who worked for the airport came walking towards me.
Immediately, I thought I was in trouble for sitting there or something.
“Ma’am, do you need something?” it turned out to be an innocent question, but I didn’t know that when he asked. So, I kinda started to cry. Again. I started to tell this poor guy my life story.
“It’s my first time traveling alone, and my flight got canceled. There’s no flights until tomorrow, so I just need to find my bag. But I don’t think I can make it to baggage claim.” I took a quick breath and let my crutches dangle on my arms in front of him. “Trust me, if you knew me, you would know that if I thought I could make it, I’d try. But I don’t think I can make it. And I hate saying that. So, I asked the gate guy who’s no longer over there, for a wheelchair. But it’s been almost 30 minutes now, and I just –”
“Hold on, you just need a wheelchair?”
“Yes sir.” I sniffled.
He placed his hand on my shoulder, “I’ve got you kid, don’t worry.”
I wanted to hug this guy. Five minutes later, my chair showed up.
Five more minutes later, I now was wheeling with a deep dish pizza in my lap, and I thought maybe things were looking up.
But then I had to convince another airport guy that I was not, and never was going to Tampa. But apparently my bags were.
“It’ll be an hour and a half until your bags come out.”
Cool. Thanks, pal.
As I sat in the middle of baggage claim, waiting, in an airport wheelchair, eating pizza, I started to think back.
I remember thinking about how much this sucked and how my day was so bad, it was almost comical. But then something hit me.
If you were to put me in this situation even a year ago, I would’ve been sunk.
I remembered one time my dad came to see me at college. He took me to Publix, of course. I noticed at one point he was standing back watching me get stuff off the shelf and he took a picture.
He looked at me and said: “You just kinda go into survival mode when we’re not around to help with everything, don’t you?”
I shrugged. “Yeah, I guess. I just figure things out. But it wasn’t always that way.”
He chuckled. “Oh Scooter, I know. I got a panicked phone call every time something went wrong your freshman year.”
I rolled my eyes and smiled, but I knew he was right.
In high school, out of my private school bubble, I was faced with the reality for the first time that I was disabled, and it made people look at me different.
No doubt looking back now, I slowly morphed into a shyer version of myself in high school because the realities of being disabled finally hit me.
But by the end of high school and the start of my freshman year of college, I was getting sick of it.
I’m still not the most outgoing person you’ll ever meet and obviously, given my dad’s description of my freshman year, I didn’t gain confidence and the guts to “just figure things out” overnight.
But I decided at the start of college that I needed to change it. I needed to stop letting Cerebral Palsy keep me from the life ahead of me.
Sitting in O’Hare, I was able to see how much I have changed since then.
Put the Jordan I was four years ago in this situation, she definitely would’ve been too scared to go up to the crabby gate guy three times.
She definitely would’ve struggled to ask for help, and I honestly really can’t tell you how she would’ve gotten out of that situation.
In the middle of O’Hare, in a messy situation, I was able to get such a clear picture of how God has used a lot of good, bad and challenging times to make me into who I am today.
A really messy situation painted me a clear picture of faithful growth.
After a long day that was a “worst thing”, I was able to be thankful and proud of who God was and is molding me to be.
When I finally got back to Otown the next day, I don’t know how many times I said to my family: “I traveled by myself and got through a nightmare travel day.”
They returned my big smile every time, because they saw it too.
Learning to rest in the growth God is putting me through, and not who I was in the past.
Learning to be excited by who He’s making me into and how that plays into all His plans for my life.
In my opinion, recognizing how you've grown, finding excitement in it and resting in how God is using it in your life, is one of the best things you can do.
It only took a canceled flight, deep dish pizza, lost bags and airport wheelchairs to make me see it.
Last year around my birthday, I posted 21 things I've learned at 21. To keep the tradition going, in no particular order, here's 22 things I've learned at 22:
My dad didn’t say anything for a few minutes. He just sat on FaceTime with me as I sobbed.
I looked up at him as I tried to take a breath and slow down my tears, but it didn’t work.
“I’m just so confused, Dad.”
“I’m sorry, Scooter. I wish I could help more.” He looked just as helpless as I felt on the other end of the video call. “Everything you’re feeling is valid.”
Sitting here today, this post is one I truly don’t have the all the answers to.
As I’m writing it, I’m still fighting the feelings I’m attempting to write to you about.
Since starting back at UF, I’ve been in one of the hardest semesters academically I’ve had so far. On top of that, like always, adjusting to living on my own again has wreaked havoc on my body and pain levels. But lately, my shoulders have hurt more than ever.
I knew this could happen one day. As a full-time crutches user, you can probably imagine what I put my shoulders through daily. And admittedly, shoulder stretching and care has been the one thing that has fallen through the cracks in my PT routines.
And now I’m feeling it. Bad. In one week, I think I broke down crying four times, not always in private, just solely because I was in so much pain.
My physical therapist and even friends tried to help me stretch, but my shoulders are so bad, no one could do much. And the massage therapist at my PT clinic couldn’t see me until next week.
Last week, I sat on the mat in PT and felt like I was begging for relief.
I felt completely lost and helpless. This crazy semester plus my body trying to remember how to do a college paced life on my own, has wrecked me. Physically, mentally and emotionally.
In fact, on that phone call with my dad, my sobs were mostly not because of my pain. I was crying and have cried in recent days, because I am struggling to process what I’m feeling.
Let me explain.
I feel like I’m split evenly in thirds.
One part of me looks at my life, my complete independence, my community and my school that I love so dearly, and I am earnestly overwhelmed with thankfulness. I know full well that God has blessed me immensely. And I pray that never gets lost on me.
But I also feel the pain I’m in, knowing it will probably never go away. I do something small like go to Publix or do my laundry, and the simplest things feel so hard somedays. I feel these things and part of me wants to be so mad that I’m like this.
But then I look at the first part of me, that’s aware and thankful. I look at friends of mine who struggle even more than me physically. I look at them, knowing in another world, I should be right where they are. I start to feel like I have zero grounds to be upset or mad. And I feel guilty for being upset about my pain or my struggle, and I know I should never take how far I’ve come for granted.
So basically, I have been an emotional mess the past few weeks.
I’m thankful because I love my life, especially here in Gainesville. I have independence, the best pals out there and a heck of a family cheering me on.
I’m also mad. Because being disabled isn’t fun and it’s hard. No matter how high my pain tolerance, it feels like it’s been failing me lately. I look at my lifetime of pain and physical struggle ahead of me, and I get really scared and sad sometimes about how it affects pretty much every aspect of my life.
And after I get done being sad or mad about it, guilt literally eats me alive inside. Because truly, I’ve come so far. And it could be worse. So how can I be upset, when the Lord has given me such a great life?
My tears have been more turmoil than anything.
How do you process three completely conflicting emotions?
I’m hard on myself, I always have been. About school and just about dealing with my challenges.
In the midst of this, that’s still been true.
I’ve told myself to just suck up the pain, ignore all the confusing feelings and keep going.
Clearly, it hasn’t been working very well.
I prayed for answers, and writing this, I’m still praying the same thing.
I don’t have answers. I’m still fighting to process and be okay with everything I’m experiencing.
I lead a group of junior girls in bible study. They’re such a sweet spot in my life, and I love them lots. As we shared about life Monday night, I did all I could not to breakdown too bad in front of them as I tried to explain all of this to them.
After I finished, I swallowed the tears I was holding back, and looked at them. “Sorry, long and confusing tangent we didn’t need. I’m a mess.”
“Yes, we did.” One of them said. I didn’t look directly at her because I knew I’d lose it.
“You’re pain and emotions are valid, Jordan. Don’t beat yourself up.” Another one chimed in. I don’t think they know how much I was holding back the waterworks.
As they showed me love and as we prayed for one another, I was reminded of my dad telling me the same thing.
My feelings are valid.
My pain is valid.
I’ve found myself in Psalm 139 lately.
In my confusion, I don’t think there’s anything more comforting than reading about my God who knows me fully and hems me in from all sides.
It’s okay to not have all the answers. All my days are written and planned in his book.
And I think those are my points in this post:
Life is hard. It’s confusing. It’s okay to feel things that don’t all make sense together. And there’s actually no way we can have all the answers.
As I still wrestle with my pain and feelings, I’m trying to rest in being known by God.
I’m believing that everything I’m feeling is valid.
But ultimately, I’m hemmed in. I’m covered. And He is sovereign.
This will pass. And one day, it’ll make sense.
Because even though my emotions are valid, better yet, He is sovereign.
Two words come to mind: answered prayers.
Before I stepped foot in the Dominican Republican for Summer Staff with Mission Emanuel, I began praying for this summer and asking others to pray with me. I put a list of prayer requests on the back of my support letter, and every time I talked to someone about my trip, three main requests swirled around in my brain:
That everything we did was a living representation of Christ and the Gospel; health and safety and physical endurance; and for strong relationships to form within Summer Staff.
If I am completely honest, I would present those requests to people, with full faith God would come through on the first two requests.
I’d seen him move in the DR before, I know he is there at work blessing Mission Emanuel. I’d experienced the way he so obviously carries me when I’m there and miraculously, on every trip before, I was never in the physical pain I expected to be in with my Cerebral Palsy.
Before the trip, the last of those three requests was the one I really wrestled with.
“I don’t know,” I remember telling one of my best friends before I left school, “I’m nervous about that part. It’s just the three of us plus our leader. I kinda know Nicole, but not that well. And I know Sydney and Summer know each other, so I’m just worried it will be hard for me to come in and be friends with them, when all of them have a base of knowing each other. Plus, I never know how people will react to my physical situation, so that always makes me nervous.”
Let me tell you something: one of the best feelings is when God proves you wrong. Looking back on our trip, surrounding that request and even the two I just told you I was confident about, God blew me away with this trip. On all fronts.
In the middle of our time, a man on one of the teams that came down asked me how long we’ve known each other.
“As a group, we’ve only been together a few weeks. They knew each other before, but I really didn’t know any of them before this.”
He looked at me and smiled. “I would’ve just assumed you have all known each other for years. Don’t lose sight of the fact that this is special.”
That wasn’t the last time someone asked us the same question and gave a similar response. We all agreed from the first day that our situation, just four of us on Summer Staff this year, was unique. What I don’t think we could’ve predicted was exactly how our friendships would grow in the matter of just a few weeks.
Without a doubt, from the first day on, these girls showed me more love, acceptance and friendship than I ever thought possible. Without a doubt, I believe God knew better than we did how bad each of us needed these friendships, all for different reasons. Without a doubt, in just a few weeks, these random girls transformed into lifelong friends of mine.
Putting us together on Staff and making us click the way we did is something only our God could do. Even in the smallest ways, I saw how God was and is completely woven in our friendships.
I mentioned before that my physical situation makes me nervous coming into every new friendship. I never know how people will react to the girl on crutches, and one of the biggest things I’ve had to fight in my life is believing I am burden to people or that I slow my friends down.
Nicole, Summer and Sydney showed me from our first day together that they didn’t care that I was disabled. From the way one of them never minded carrying my plate of food and told me to stop apologizing about it, to the way one of them always found my walker when we would arrive at the Mission each day, I truly feel undeserving of the way these three loved me so well.
I haven’t told them this part specifically, but one of the ways that showed me love so well, was completely silent. And as I experienced it one of our last nights, I silently let a tear escape as I felt the magnitude of something, something I don’t think they even realized they did daily.
My entire life, I’ve just wanted to keep up. In a very literal sense, from the time I was in a walker in kindergarten to now, on crutches in college, it’s always hard for me when I’m walking somewhere with a group of people. Most of time, I end up in the back, trailing behind. I know that when this happens with friends, I’m never purposefully left behind. But nonetheless, those moments I find myself trailing behind groups, are always hard. Because I know it’s nothing anyone does on purpose and because of my fear of slowing my friends down, I rarely say anything. I just crutch faster. Before I go further, trust me when I say I’m so aware of how the Lord has blessed me insanely well with friends who accept and love me in college. I am in no way discounting how blessed I’ve been with the people in my life. I am just so thankful for this unique situation of our Staff and the clear picture it painted for me.
As I found myself in this tiny squad of Summer Staff, I never found myself trailing behind or struggling to keep up. As I would hop off the bus, the three of them without fail, would be standing there with my crutches in hand. As I slowly pushed my walker over crazy terrains, they were right by my side, often holding the back so I didn’t lose my footing. As we walked back upstairs every night, they always waited for me to make it up the lobby stairs and never left me behind as we headed to our room. When I fell behind the big groups on the way to dinners, they fell behind too.
By the middle of the first week, I silently noticed how they consciously never left me. I noticed how it was a conscious choice by them, but they definitely didn’t realize how much it meant to me.
I walked into Summer Staff, fully expecting to feel out of place. But I never did.
Asking for help is something I struggle with. Though I still asked them every day at meals and other times, when they told me I didn’t have to ask or apologize, I knew they meant it.
They were there. Everyday. I never really needed to ask.
We partner with Mission Emanuel to join in their mission of loving their neighbor, building community and being the body of Christ.
And through these friendships that I now forever cherish, I personally experienced exactly what we try to do for the people of the DR.
My Summer Staff pals loved me well and carried me, without making me feel like an outsider.
Friends, that is the body of Christ. That is the family we are called to be a part of.
Nicole, Syd and Summer: I love y’all so much. Thank you for the laughs that filled our room nightly, the honest words that we shared and for how true your friendship is.
Here’s to one of the best summers I’ve had, with some of the best people I know.
To a God who cares and knows what he’s doing.
And to a God who constantly proves me wrong, in the very best way.
I didn’t know Alexander. But now, I’ll never forget him.
What blows me away constantly about God, is his ability to place people in each other’s paths, for the perfect reason, at the perfect time.
What blows me away constantly about God, is how his plan is worked out so far in advanced and is constantly moving.
The Dominican Republic has had part of my heart since I first came here in 2012. The ways Mission Emanuel (ME) builds meaningful, lasting relationships and loves so deeply, is such a clear depiction of the Gospel to me. And from that first trip, I knew this place, these people and this mission were forever going to be a part of my life.
When I decided I wanted to go on Summer Staff this summer with ME, it all started happening so fast. I filled out my application and found out a few weeks later that I was accepted. And as I started the fundraising process, I was completely shocked and humbled by how fast I not only reached, but surpassed the fully funded mark.
With the way it was all so quickly falling into place, I couldn’t help but think that God might have something super special planned for my summer in the DR.
Now after the first week, I can tell you that that is so true.
I didn’t know Alexander. But now, I’ll never forget him.
It really all started back in January when my dad went on a trip. He called me and told me that they were working on a house for a lady named Mari, who had a son with Cerebral Palsy (CP). He said that her son had passed away, but this house was such a picture of promises being fulfilled. He said he told her about me, and he thought it was so special that he was there to work on the house.
Last week, months after Dad’s trip, I passed buckets full of concrete and painted walls on that same house.
And at the end of the week, I met Mari. I met her as I handed her the keys to her new house. She held me as tight as she could, and we both wept.
Mari looked at me and the people around us, and thanked us over and over.
She called me family and told me that when she saw me, she looked at my legs, and her heart leapt. Because of her son, Alexander, who God made like me, we were connected.
Though I didn’t understand her Spanish, others translated for me. As she held my face, she told me: “God makes people like you and my son. You are a child of God, and you are beautiful.”
Words didn’t come. I just nodded and smiled and hugged her, as more tears streamed down my face.
Questions are something I believe none of us can avoid, because we are human. And we don’t know that plan that God has in advanced and always moving.
My entire life, I’ve fought questions. I wonder why a lot. Why I have to live in pain, why I can’t walk. Why I know hospitals better than the average kid. Why as a kid, I went to more PT sessions than play dates.
I know God made me this way. But when I think about it, it’s easy to see that in a negative light. It’s easy to see the way I am as a bad thing. It’s easy to let pain and negativity overflow and fail to seen any purpose in it.
I sometimes also struggle on the opposite side of the spectrum. Because I realize how the Lord has immensely blessed me with resources, I wonder why I’ve had the chance to constantly improve my situation, and some others don’t have that chance.
Simply put, my medical challenges can make it really easy for me to be mad and confused for a lot of reasons.
As I stood in the middle of this house and held a weeping mother in my arms, I cannot explain to you fully the feeling I had. But in that moment, I saw a small piece of God’s plan coming to fruition.
Our lives are forever woven together. And it’s because of years of planning on our God’s part.
From the doctors who walked alongside me to get me to a place where I can physically be able to be in the DR, to Mission Emanuel being there to stand by and carry Mari through the darkest times, to my dad being in that first group to work on her house, God was in every second leading up to our emotional hug.
I’m not claiming to now magically and fully understand God’s plan. But I fully believe our God is an intentional God. And this moment painted a picture of that part of his character.
I fully believe that God constantly gives us glimpses of his perfect plan and that those are some of the most beautiful moments.
I will never forget Mari’s words to me. As she wiped my tears, and I heard her call me a child of God and beautiful, I can genuinely say I’ve never believed those words more fully than when she told me those things.
In that moment, I felt like Heaven was meeting Earth. People from Illinois to Florida to the Dominican, stood together in support of one family. Who is all their own family.
Like it says in Nehemiah, the joy of the Lord is Mari’s strength. It’s my strength. And it’s the strength of every hand that has worked with Mission Emanuel.
Today, I am thankful for an intentional God. I’m thankful that family means more than just blood. I’m thankful for a God who loves, cares and plans. And I’m thankful that joy found in him isn’t dependent on circumstances, but everlasting.
I didn’t know Mari’s son, Alexander. But now, I’ll never forget him.