The Hope in Saying “No”

Hey friends! I definitely fell off the radar again, between moving into my new apartment and breaking my collar bone and turning 21, I’ve been a little busy. BUT! I have a ton of new things that I’ve been working on, and super cool opportunities coming up that I literally can not wait to share with you.

But today I’m a little broken hearted.

This morning I had the chance to buy really cheap tickets to tomorrow nights Ed Sheeran concert. I would get to go with a friend that I love and it would have definitely been a night to remember. I’ve been listening to the Divide album on repeat for MONTHS and it’s one of the only secular albums that I know every lyric to.

But, I can’t go. Why? Because I’m a sick kid.

The same reason that I can’t go to parties, movies, conventions, or even church some weeks.

I knew that I wouldn’t be able to go. I knew that the lights would stimulate my broken brain too much, the sound would hurt my bones to the core, and the crowd would terrify me to no end. I knew I wouldn’t be able to bring my service dog to help with my symptoms, and I knew that any medication I took would put me to sleep before we even arrived at the arena.

And yet, I still did everything I could to make it work. I could picture the perfect night that I wanted. The fun we would have, the memories we would make. I was excited and the anticipation of going was nearly unbearable.

Once I made the realization that I would have to say no, I was devastated. I’ve had to say “no” way more often in my life than I’ve been able to say “yes.” I’ve missed so many birthday parties, Six Flags days, concerts and even camps and retreats because my body forced me to say “no.” I’ve always felt deprived and isolated and less-than because of that.

My first question today was why did I get so excited when I knew the answer was going to be no? I knew this was an unrealistic situation, so why did I even bother entertaining the idea?

After being sad for a solid 4 hours, I realized that the entire reason I experience disappointment is because I have hope. If I didn’t have hope, there’d be no reason to ever get disappointed. For nearly an hour today, I had SO much hope in going to the concert that I completely forgot my limitations and pain.  I have the hope of one day living a normal and healthy life (whatever that may look like), so therefore it’s devastating when I am reminded of my current inabilities and differences. That’s not to say that my hope is lost, because it definitely isn’t. It just means my present reality has to be altered a little bit.

So at the end of the day, I’m feeling a whole lot of gratitude for my heart’s ability to find hope amidst devastation. I’m thankful for that hour of extreme anticipation and hope this morning that allowed me to completely forget the realities that I’m facing currently. I’m comforted in knowing that my hope has not been lost, and that someday I will get to have that perfect and healthy body- even if that might not be here on Earth.

With all the love,

A

A Life That Could Not Be

Saturday was my 21st birthday. I’ve been asked about my expected first hangover at least 5 times… But I’m not hungover. I still haven’t had a single drink. Well, if I am hungover, it’s the classic anxiety hangover that most of us know so well. 

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For the past few weeks, I’ve bounced back and forth between excitement and dread for the upcoming day. I made plans, I cancelled plans, I got excited, I cried, I told everyone it was my birthday, then I even wished it wouldn’t happen. 

Looking back, I realize that this is something I go through every year. It’s a sick kid thing, I’ve come to know. Kids like me fight so hard to get to the next birthday. To survive just one more year and hope for less pain and healing in the process. It’s meant to be a celebration of the victory of survival for us. It’s a day to prove our clueless doctors and their uneducated prognosis wrong. 

Despite all that, it’s still a day of disappointment for a lot of us. We can’t celebrate in the ways that we want. Pain holds us back. Anxiety paralyzes us. Unexpected tremors or infections don’t get put on hold for a birthday. Everything can still go wrong. 

I spent my day busy but pretty depressed, to be honest. Meeting my favorite friend for coffee turned into an internal war with myself because I was consumed in sensory overload and complete panic, but I couldn’t show it. I became trapped in myself and shut down to the outside world. I lost my “out loud” words for a solid 4 hours and had to sleep it off. 

I cancelled my roomie hibachi celebration at least twice in the span of 6 hours. The thought of being in public again was too much for me. We decided to go in the end, and even had to switch tables because I couldn’t tolerate the sound in the room. My friends kept saying “you’re safe with us” but my mind told me to run. 

An older friend that I trust a lot offered to take me out for my first drink. I wanted so badly to go and be a typical 21 year old, but instead I got in bed and cried. She showed up at my door and laid there with me. 

As difficult as this day turned out to be, I kept coming back to the same lyric from JJ Heller’s newest single Braver Still:

“Its ok to grieve a life that could not be.”

This is what chronic illness really looks like.

 The life that we had always dreamt of for ourselves is no longer a possibility, and that’s something we have to allow ourselves to process and grieve.
If you’re going through this too, just know that it’s okay for that grief to last a long time. Losing a life time of possibility and our own expectations of opportunities to come will definitely take some time. I’m 9 years into the pain, and daily think about my life that simply could not be.
Instead, I’ve been given a life that is so much fuller than I expected. My opportunities are just as abundant, even if they look different than I imagined. I’m 21 years old and have experienced things I never imagined possible, and learned more than I could have ever imagined.
I’m 21 years old now, and more grateful for life than I ever have been before. But even still, it’s okay to grieve the life that could not be. IMG_5031
With all the love,
A

Hide the Broken

I had major anxiety at Target the other day, for no reason other than that’s what my mind likes to do. Panic.

My service dog, Malibu, was alerting like crazy. People were obsessing over the “cute dog” in public. I was trying to find an empty aisle to get away from reality. (the tupperware aisle in the corner is ALWAYS a safe place, FYI)

Thats when I heard the sound of something breaking nearby. I looked around the corner and a girl about my age was holding a cute little mug that was clearly in two pieces. She was looking around nervously, probably conflicted about what to do next. She put it in her basket as if she was going to keep the broken one, or at least admit to her mistake.

A few minutes later, I had made it to the coffee aisle (where I needed to be in the first place, obviously). I saw the same girl across the aisle, again holding her broken mug. I watched as she carefully put it back on the shelf, amongst all the other similar mugs. Then she walked away. She had successfully hidden her broken pieces with a sense of order and guilt. Nobody had to know what had happened. She could walk out of the store free and with a mug in one piece.

My panicked  brain started to solidify into coherence and symbolism, the two most important aspects of my thoughts if you ask me. In every sense, that girl and I had a lot in common – her brokenness was just more literal and tangible.

Here I was, with a dog who wouldn’t take her eyes or her tongue off of me, in the midst of an anxiety attack, seeking solitude and wholeness. I was broken, possibly beyond repair, but hey – we all are. I was hiding my pieces in the tupperware aisle, out of sight and out of mind.

Why is it so natural for us to hide the broken pieces? Why can’t we accept our flaws for what they are – beautiful and unique and vulnerable and real?

I don’t know the answers to those questions.

What I do know is that I’m loved for every part of me, the broken and the whole. No part of me is  deserving of hiding. I’m free of all those chains, whether I recognize it and accept it or not. I’ve been made just as I should be by the One who makes no mistakes.

I know that the same is true for you, too.

Trust me, I just know.

Let’s stop hiding.

With all the love,

A

 

Rabies in the Name of Jesus

Happy weekend!! Today I’ve got a little story for you. Recently, I hinted at the fact that I have a fear of cats after being attacked by a stray last fall. I asked if you wanted the full story, and the people spoke! So here’s what happened:

Last year, I had the privilege of being a young life leader of Freshman girls at my university. I had an incredible group of more than a dozen girls, and the best co-leader ever. Early on in our fall semester, I got a late night phone call from one of my girls. I remember seeing her name on my phone and thinking ” Yes, Lord! A chance to love this girl and serve you!”

Well, turns out homegirl found a stray cat on campus, and she desperately wanted for me to bring it home with me until we could get it to a shelter. I knew THAT wasn’t going to happen, but I also knew that my sweet girl wouldn’t go home until I came to assess the situation.

It gets a little blurry from here.

I remember showing up and seeing the cat resting peacefully on my girls lap, but the next thing I know… Its teeth are in my arm and its claws are embedded in my shirt. I shook it off of me and calmly told my girl to head home, that the cat ran off into the trees and it will be okay.

Knowing that wounds like this would seriously set off my CRPS, I texted my friends as I got into my car. “Meet me at the apartment in 5. We’re spending the night in the hospital.” Sure enough, they were there when I got home.

You see, I went to the hospital in preparation of the massive pain flare that I knew was coming. All I knew was that I had two bites and an 11 inch scratch on my ribs that hurt REALLY bad. Rabies was a foreign concept to me, but it was the first thing the doctor brought up when he got in the room. Yep. I needed treatment.

The doctor educated me a little bit on the risk of rabies. Essentially, any stray in an area like this has a high risk of contracting rabies due to the large bat population (who knew?), so I needed the shots as a precaution. The best (read: worst) part? Rabies is 100% fatal once symptoms begin. Needless to say, I chose to go through treatment.

What does rabies treatment look like? WELL LEMME TELL YA. It looks like needles. Lots of needles.

Your days become numbers after exposure to rabies. That was the first thing I learned.

Day 1: a tetanus shot. A rabies vaccine. A rabies shot into each wound (about 4 for me). Another shot in the leg just for fun.

Day 3: More anti-rabies serum in each arm.

Day 7: ….again.

Day 10: More….

Day 14: …..

FOR SO MANY DAYS.

And friends, listen here – these aren’t just your friendly little flu shot pricks. These things HURT. After one of my first shots, a friend had to cut up my chicken at dinner because I couldn’t lift my arm. No joke.

The first few months were full of caution, as you have to get tested for rabies any time any symptoms appear, and symptoms range from cold-like to neurological (which, hello, I have a neurological disease.)

It was stressful.

It was traumatic.

It was exhausting.

I have a phobia of cats.

Moral of the story: PLEASE DON’T TOUCH STRAYS. DON’T EVEN LOOK AT THEM.

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The last time I voluntarily picked up a cat – my cat-nephew, Tuna

With all the love,

A

Brave Girl Gets Intentional

Last night I had the honor of chatting with and getting to know the heart of an incredible man named Josh. Josh and I have known each other for a bit on Instagram (follow him here and me here), but last night we took our friendship to a phone call level, and man was it worth all the phone anxiety in the world.

After nearly an hour and a half, I hung up the phone feeling more known and validated than I ever have in my life. Josh is a world-changer, and I like to think that I have the potential to be one, too. Our conversation was important. It was intentional. It was productive and educational, for both of us. It was brave.

When I shared with him that I think of myself as a good listener, we began to talk about the lost art of listening. He’s a talker, he said. He asked me why I consider listening to be so important. I told him about the way our generation tends to listen to reply, not to fully understand. I explained how listening closely allows for me to learn more about people, environments, and situations. It forces me to accept new perspectives that I would have missed before. Listening is my favorite.

We talked about the uniqueness of each individual in the world. We talked about how some people go to college, and some don’t, and how that is okay because we all have our own individually designed paths to follow. We talked about the “societal guidelines” that are engraved in our minds from a young age – “College only takes 4 years. You will settle down and live a traditional suburban life.” Both lies that he and I have individually dispelled. We talked about how we should celebrate these differences and encourage each other along the way.

We talked a lot about his mission to pour love into this world, and how I fully believed in this mission. His desire is to know stories and experiences that he might have never encountered. We both want to encourage and empower others the only way we know how, through intentionality and freely given love.

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Slide1Friends, I want to challenge you today. I challenge you to have an intentional conversation today. Call someone that you haven’t talked to in a while (or ever!). Send an unexpected and encouraging text. Stop to compliment someone on the street. Spread love… we know this world needs it. 

Leave me a comment below letting me know that you’ve completed this challenge, and tell me all about it! I believe in your ability to be brave.

With all the love,

A

Malibu Monday

Hey friends! Been a little while, I know. Life got insane for a second… and it’s about to get a whole lot more wild.

My heart grew by 78 pounds yesterday!

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before she found out that she had a home! 

Meet my girl Malibu!

Malibu (Mali for short) is a 4 year old Great Pyrenees mix- likely with St. Bernard. She’s a big girl with a whole lot of fur! I rescued her yesterday from one of my favorite shelters, and could not be more excited to love this girl for the rest of her life.

Mali is adjusting well to her new home, but she’s a bit sad. The last few weeks have been rough for this girl. Her owner was killed by a drunk driver, and Mali and her brother were surrendered to the shelter. Mali loved her brother and was glued to his side, but unfortunately he was adopted without her a few days ago. Sweet pup is learning how to live and love independently now – but hey, so am I!!

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So far her favorite things are naps and walks!

Here’s the best part: Malibu is my Service Dog In Training! Within a few months, she will be trained to help me with a multitude of tasks relating to chronic pain and also anxiety and panic. She’s going to save my life even more than I saved hers, for sure.

We are so excited to begin this journey and document it along the way!! I hope you come along for the ride to see this sweet girl from sad dog to service dog!

With all the love,

A

What I wanted to tell you

I wanted to tell you everything. I wanted to tell you what I did today, the conversations I had, and the places I went. I wanted to tell you how I saw Jesus around every corner. You wanted to know. I wanted to tell you.

I couldn’t.

I wanted to tell you that I was sorry. I wanted to tell you that it wasn’t your fault, but it also wasn’t mine. I wanted to tell you the truth.

I lost my words before I got the chance. The English language literally slipped out of my grasp before I could even take another breath. I was paralyzed. You were frustrated.

I wanted to tell you why:

I have anxiety. Real, physical, diagnosed anxiety. The kind that requires the maximum dose of daily meds, and an extra bottle of pills for panic attacks – panic attacks that make me feel like I’m dying. I feel like I can’t breathe. The world slows down, the walls close in, and I can’t hear anything over the sound of my own pounding heart. I panic more often than I wash my hair. This is my reality.

You told me to relax- to breathe more.

“Just calm down,” you told me. “Use your words.”

I wanted to tell you that I can’t. Anxiety is a part of me. It’s not a phase. It’s not a “moment.” It’s a lifetime. I wanted to tell you that it is more frustrating and confusing for me than it ever will be for you.

I wanted to tell you what it’s like to be trapped in my own mind. I wanted you to know what it’s like to feel like there are too many people in the room, when in reality you’re home alone. At the same time, I wanted you to know the feeling of being completely unseen and unheard in a room full of your best friends. I wanted you to know what it’s like to go from feeling safe to feeling threatened in less than a minute, all because of one thought that triggers another that triggers another that triggers another. I waned to tell you what it’s like to lose your words, leaving you defenseless and helpless.

I wanted you to feel it. I wanted you to feel anxiety and panic.

But then I realized, maybe you do.

Maybe you’re hiding it like I did. Maybe you feel like anxiety took your voice too. Maybe you were also told that your anxiety isn’t real or important. Maybe you think that anxiety makes you weak or less than.

I want to tell you that I felt the same way for way too long. I want to tell you that I’m listening and I’m here and it’s okay.

I wanted to tell you that I love you, but anxiety told me not to.

I want to tell you that I will love you forever anyway, because at the end of the day, anxiety doesn’t get to tell me how to live.

With all the love,

A