What We Need

Today I begin client contact as a part of my journey toward becoming a therapist.

Pardon me.... I think I just threw up a bit as I typed that sentence.

I'm terrified. Petrified. Mortified. Stupified.

But I'm excited.

I've been in school for 18 years now. From kindergarten, all the way through the tail end of my first year of grad school, I've been working hard... all for this moment.

To interact with others in a way that is helpful. To talk with others in a way that is useful. To spend time with others in a way that is loving, edifying, and beneficial. I've worked toward this my entire adult life.

Will I fail? Possibly.
Will I be of any help? Maybe.
Will I mess up? Most certainly.

But does it matter? Is the fear of failure so powerful that we avoid helping others? Are our own egos so fragile that we cannot enter into relationship with those who are broken, giving of ourselves, our time, our emotional resources, and our lives?

What is stopping us?

The world needs love. Pure, unadulterated love. Love uncoerced, love unconstrained. And it needs it now. Today. Right here. In this very moment.

What's stopping us? What keeps us from moving? What keeps us staring at our screens, in the safety of their glow? What stops us from stepping out into the safety of the Light of Love?

Us. Ourselves. Me. You.

There is no other scapegoat but the face we see in the mirror.

Because when it comes down to it - when we really dig deep down inside, we notice something. Whether we wear a different color of skin, or were born into a better set of circumstances, deep down, we're all the same. We don't love others because we ourselves crave and long for love. We don't reach out because nobody has reached to us. We don't sacrifice because we've never seen it done before.

... or have we?

You see, over 2000 years ago, a man - God himself, at that - nullified our excuses. When Jesus sacrificed his life, he also sacrificed his ego, his status, his wealth, his career, his friends, his family, and the love he had already secured. He sacrificed the comfort of Galilee for the brutality of Calvary.

And yet here we are. Terrified. Petrified. Mortified. Stupified.

But why aren't we excited too?

My friends, it's not about what "the world" needs. Because frankly, we're in the world, and we look a lot like it. We need love as badly as our neighbor. Something tells me God had that in mind as he asked us to love others as ourselves.

Because without Love, we're all bankrupt. Empty. Destitute. Alone.

And that's what we fear. We fear that if we reach out, if we sacrifice ourselves in any small way to love others, we'll fall flat on our faces, and nobody will be there to pick us up. And you know what?

I feel the same way.

As I begin this internship, working both at a low-cost counseling center and a homeless shelter, I'm scared of being alone. Of no one understanding. Of no one caring.

And yet, here I am. Terrified. Petrified. Mortified. Stupified. But excited.

Because I know I will be alone at times - at least in appearance.

But I will rest assured that the very God who picked a lonely criminal to be in Paradise with him as he hung to his own death would be willing to do something so simple as to comfort me. To care for me. To pick me up when I fall, dust off my pants for me, and give me a gentle hug. The very God who received no love in his final dying breath will choose to love me so greatly, so powerfully, so deeply, so passionately... it's overwhelming.

Don't you think he wants to do the same for you?

It's not what the world needs.

It's what we all need.

And that is something to be excited about.

... ... ...

What stops you from pursuing others? What opportunities do you have to show love to those around you? How has God shown love to you lately?

The Uncertainty of Being Dory

They say the only thing that never changes in life is change itself.

Life twists, turns, ebbs, and flows as we wade through its currents. Sometimes we're swimming along, content as a clown-fish who has just been reunited with his son - we're thrilled to be like Marlin, from Finding Nemo. Other times, we wander aimlessly, unsure of who we are, where we're from, or where we're going - you could say we're a lot like Dory.

This, my friends, is one of those times when you could call me Dory.

It has been eight months since I last wrote here. That's 240 days. Something like a billion hours (give or take a few million - my math is a little shoddy). And with that time passed several moments in our lives that have radically shifted and shaped who we are today.

In the last eight months, I can't even begin to name all that has happened.

We moved. Again. I was placed as a student therapist at a homeless shelter. We began volunteering and falling in love with Young Life. I discovered the joy that is home-roasting my own coffee. I visited a casino for the first time. We took photos with several wonderful high school seniors and families. I had brain surgery.

And the list goes on.

In all of that change, I felt flustered at times - I wanted life to pause for a second. It's been moving so quickly lately - how am I supposed to enjoy it when I barely know which way is up?

And yet, one thing that has persistently been on my mind - why did I stop writing in that time? Was it because of me? Was it because of you, whoever you are? Was it because of my sickness? Or just because I stopped waking up at the buttcrack of dawn?

I don't have an answer for why I stopped writing. But it doesn't mean I stopped living. And I don't know that I'm "back," so to speak. But I'm here now, in this moment. And I'm enjoying it while I can. I'd like to enjoy it with you, despite all the crazy change that keeps occurring.

Why?

Because in these last eight months, I've learned that "they" are wrong. Change isn't the only constant. In fact, it may be the least important of any constant I can consider.

When I think of the craziness of these past months, and I remember learning to roast my own coffee, having brain surgery, and being placed as an intern at a homeless shelter, I don't remember change. I don't remember chaos. I don't remember the uncertainty of being Dory.

Instead of remembering change, I remember Love. 

When I learned to roast my own coffee, my wife watched with joy from and celebrated with me as I enjoyed my first cup of hand-crafted coffee.

As I was wheeled to the surgery room to be cut open from my head to my stomach, my family and friends were close by in spirit, even as many were no where near the hospital.

And as I discovered where I would be working as a student therapist, my new friends in class celebrated with me, even if I was a bit reluctant about it at first.

My friends, the last eight months haven't been perfect. They've been painful. They've been chaotic. They've been, at times, unbearable. But in all that pain, in all that chaos, and in all that change, I have discovered the one constant that has been there all along - and not just in the last eight months, but since the beginning of time.

So though I may feel like Dory today, unsure of who I am, where I am, or where I'm going, I know that Love has been by my side all along. I may have felt alone and desperate at times, and I may even feel that way today. But I know that change isn't my only companion; Love is close by - watching, waiting, beckoning.

Because without Love, this whole mess falls apart. Without Love, we lose purpose. And without Love, what more do we have than the cold chaos of change? Thankfully, whether we see it or not, whether we acknowledge its presence or try to sweep it under the rug, Love is with us.

And then again, it always has been, hasn't it?

... ... ...

You guys, the last 8 months have been insane. And I know I'm not the only one, so I'd love to hear from you. Leave me a line in the comments section so I can hear what's been going on in your life lately!

What has changed in your life in the last 8 months? What are some of the ups and downs you've experienced? Where have you seen Love?

image credit: Dory

My Hazardous Journey for Faith

Today, I'm continuing in sharing narratives that has defined who I am today and who I'm hoping to become tomorrow. 

If you haven't already, be sure to check out the first narrative I shared last week: my PCD story, as told by myself, my mom, and my wife.

... ... ...

My journey for faith isn't altogether common. I didn't see a "bright light" or have a dramatic conversion experience. I don't remember what date I considered myself "saved," nor what date others might have considered me to be saved. 

The journey hasn't been a straight line; I've often taken one step forward and three steps back. I'm also not as self-assured as many are in their beliefs; I may be wrong about many things, possibly even everything. 

It's a hazardous journey, but it's worthwhile. However hazardous it may have been, though, my faith narrative is an honest search for truth, as I hope to find what I'm looking for in the end.

... ... ...

As with many significant shifts in my story, the first one begins with a girl. 

This girl was funny, smart, and incredibly friendly. In my eyes, we were meant to be. Naturally, I wanted to get to know her. What I didn't know is that I'd get to know her, her family, and her faith by the end of our time together.

There is one small caveat, though: this all occurred in grade school.

I was a too-smart-for-my-own-good child who had never stepped foot inside a church. I wasn't raised to believe one way or another; instead, I was simply raised to live and enjoy life. I loved reading, playing video games, and enjoying a good game of catch with my mom. I was a typical elementary-aged boy, picking on my sisters, ignoring my parents, and forming crushes on every girl I met.

So when Jenna first invited me to AWANA, a church program for children, I wanted to impress her.

"Have you ever been to AWANA before?" 

The question was harmless, and in retrospect, a simple "No," would've sufficed. Unfortunately, I was prone to lying, so these are the words that escaped my mouth instead: 

"Yeah! We play baseball and all sorts of games at my AWANA!"

If we were watching this journey on tape, now would be the first of many occasions necessitating a face palm. Go ahead, do it.

I'm not exactly sure how the conversation went after that - it's been nearly 15 years since then - but eventually I must have said yes, because next thing I knew, I was regularly attending church with Jenna and her family.

The church was fun, friendly, and dedicated to working with kids. It was a perfect environment for me to be introduced to my faith in. The church was of a Baptist persuasion (they've now relocated and changed their name), but that didn't matter much to me as an 8 year old. All I knew is we were playing games, I was able to spend more time with Jenna, and I was learning about a really cool guy named Jesus.

I attended AWANA at this church throughout elementary school. Jenna's family either picked me up or took me home every week. Those car rides were almost as amazing as the church itself. It was nice to be introduced to faith and to a family who surrounded me with love.

I will be forever grateful to Jenna, her parents, her brother, and her sisters. A simple question and a little love drastically changed the course of my life for the better.

... ... ...

After elementary school, I stopped attending church. Jenna attended another school, and we no longer had the connection we once did. I wondered about them on occasion, but as with most middle-school boys, I was mostly focused on myself.

Middle school was a dark time in my life. It's another narrative for another day, but I was in a scary place during these years. As my mom once put it, I slept through sixth grade - I was very sick - and then in seventh and eighth grade, my naive hope was to find the girl of my dreams and be the most popular kid around.

I failed on both counts, for anyone keeping score.

There isn't much to tell about this time in my life. My faith was stalled and I wasn't interested in fixing it. I was in a dark, hopeless place, and I wasn't sure if I would make it out. 

But even in the darkness, hope was present. Even if I couldn't see it, joy was pursuing me. 

These years would lay the foundation for my next big step in faith.

... ... ...

High school was a welcome change in my life. I needed a new environment. I needed new friends. I needed a new chance to be who I was and to become who I'd eventually want to be.

I emerged from a time of deep depression with the clearest signs of hope in years. I was meeting new people, experiencing new things, and redefining myself as a person.

And then along came... you guessed it, another girl.

At the time, I couldn't pinpoint it, but there was something about this girl that intrigued me. Maybe it was the chase. Maybe it was the mystery. Maybe it was my hormones. Either way, I wanted to get to know her and see if there was anything between us.

This girl made it clear, though, that she was a Christian. Naturally, I remembered back to my younger years and boldly declared, "Well I am too!" I hadn't a clue what that meant, but if I got a chance to go out with her, it was worth it.

Again, I had a sad propensity toward lying.

Eventually this girl invited me to church. At this point, I had visited a youth group before, but it was nothing like the one she took me to. At her church, we sang songs I could actually understand, there was more than 5 people to meet, and those people were some of the friendliest people I had ever met!

So I started attending an Assembly of God church with this girl. And for the first time, I began making my faith my own.

Somehow, before this time, I never grasped that the Bible could be understood. I didn't really think anything of the Bible, other than that preachers read it a lot. It might as well have been in French.

But for some reason, this youth pastor (whose name I never even knew) communicated its words in a way I could understand, in a way that meant something to my life. He delivered truth in a way that inspired hope within me. And at this point in my life, I still thought hope was never meant for me.

I continued attending the church for a while. I also eventually dated the girl I liked, but it didn't last more than a week or two. Eventually, I realized I needed to move on and continue making my faith my own.

... ... ...

Now back in elementary school, AWANA wasn't the only reason I went to church. Sometime after I met Jenna and her family started taking me in, I also started going to church on occasion with my next door neighbor.

The draw for me here was Upward Basketball, a basketball program for youth. I loved playing basketball, so I didn't really care where it happened, as long as I was allowed to dribble, pass, and shoot a basketball. It just so happened that this all occurred inside a church.

After I grew out of Upward and my neighbor moved away, I stopped attending the church for quite some time. Somehow, though, this church stuck with me.

So when I needed to move on to a new church, to help form my own faith identity (and to move on from my ex-girlfriend), the Southern Baptist church that hosted Upward was the first thing to come to mind. My old neighbor still attended my high school, so I knew I could still go with him if I desired. 

The youth group, by this point, was dwindling. The church had gone through a lot of turmoil over the previous decade, and the leadership was brand new. This church wasn't as youth-friendly as the other churches I had attended, but it was exactly what I needed at this point.

I got plugged into the youth group, and I eventually made new friends at the church, desiring to go even if my old neighbor didn't. It was during these years that I developed a lot of the foundation for my faith. I grew into a leader in the youth group and did my best to follow as Jesus led me.

Unfortunately, during my time in this youth group, I dated around a bit and burned a lot of bridges in the process. It was clear to me that my time was coming to a close with this group, but I wasn't sure what to do if I left. I knew I needed to continue growing and learning, but I didn't know how.

... ... ...

Of course, along came another girl.

I met this girl through a few new friends at school. I had finally emerged from my depression and was learning to be myself around others. This allowed me to form new friendships that wouldn't have happened otherwise.

I met this girl at a concert. Luckily, Facebook was just becoming popular around this time, so I was able to look her up afterward and connect with her. We hit it off and eventually started dating.

At this point, I was still attending the Southern Baptist church I knew so well. Things were only getting worse there, though. I found myself dreading church and loathing every night I had to go there.

So naturally, I tried everything I could to make things better. I even invited this girl to visit with me, but that didn't make the night any more fulfilling. I knew something had to give.

Now I'm fuzzy on the exact details here - this has been a long journey, after all - but at some point, I decided to see what this girl's church had to offer. And it turns out I truly enjoyed my time there. I started visiting more often, but I could never quite get myself to leave my roots. I felt responsible for the youth group I was already in.

I dated this girl off and on for about a year, and after ending our relationship for the last time, I decided I needed to take a break from girls. I thought they might be the reason I was struggling so much at church, and so I started attending more regularly, hoping things would get better.

Unfortunately, they only got worse.

... ... ...

And then... you guessed it. I found another girl.

It just so happened that this girl attended the same church as my ex-girlfriend, though. I had liked this girl for a while, but at this point, I was trying to distance myself from relationships; I needed to focus on my relationship with God.

And then one summer day, in the middle of my dating "fast," she sent me an instant message (yes, I'm dating myself a little, even though I'm young). She decided to give me a chance, and I couldn't pass it up.

We started dating, and I started visiting the same Christian Church again. I stuck to my roots in my old youth group for about another year, but I knew the time had come to say goodbye.

A new youth pastor was starting at my girlfriend's church, and I figured I could transition with him, help him out, and maybe find a new faith family. In retrospect, it was a ridiculous idea, but it ended up working out well.

I started attending my girlfriend's church on a weekly basis, helping lead the youth group with our new, passionate youth pastor. He took me in, loved on me, and pushed me to develop my own faith as I searched for truth.

All along, I craved what I once had back when I was younger. I didn't see it then, but I knew I wanted what I once had: a family who would love me and a faith community who would support me.

What I didn't know is that I would find everything I craved and more.

... ... ...

Interestingly enough, the final piece of my faith journey (so far) still involves that same girl.

As many of you know, I married my high school sweetheart. We dated for three years and have been married for three years. And we've taken the next step in our journey together.

We experienced a lot of pain, hurt, and deceit at the Christian Church we attended during high school. Lies were told, rumors were spread, and hearts and lives were destroyed. So when we moved back into town after college, we knew we'd be looking for something different.

In college, we found a church we loved. It wasn't perfect, and we didn't agree with everything they said or did, but it was a place where we were loved and supported - again, what I'd been seeking all along.

Since then, we've been hoping to find another faith community like the one we had in Manhattan. So far, we've struggled. 

We've really wrestled with the fact that we haven't been able to find a new church home. Are we terrible Christians? Are we doing something wrong? Are our standards too high? These questions plague our hearts every day.

My faith has emerged from ignorance, beginning in a small Baptist church, suffering through depression, into an Assembly of God congregation and a Southern Baptist youth group, through a couple of Christian Churches, and into our current state of church homelessness.

It's been a hazardous ride to today, but the journey has been worthwhile. Every piece has been significant. And I believe even this piece, one of wandering and church homelessness, is integral to our future. 

So we keep searching, keep hoping, keep praying, and keep waiting. Because faith is worth it. Because love is worth it. Because Jesus, regardless of the hazards he takes us through, is worth it.

... ... ...

I’m sharing My Hazardous Faith Story as part of a synchroblog connected with the release of Ed Cyzewski and Derek Cooper’s new book, Hazardous: Committing to the Cost of Following Jesus.

Feel free to join in with your own hazardous faith story!

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Questions: What hazards has your personal journey for truth been through? What moments in your life have shaped who you are today? Where do you hope your journey eventually leads you?

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Win of the Week

It's Friday, Friday, gotta get down on Friday...!

(You know you've missed that song.)

Terrible songs aside, we've made it, my friends. It's the end of the week, and we can all let out a collective sigh of relief. Let's do it together, shall we? Ready? 1... 2... 3!

Yeah, that feels better.

And now it's time to party! Why? Because we've made it through another week. We've survived the ups and downs of life once more, and we could really use a moment to rest. 

That, my friends, is why we gather today to celebrate our Win of the Week!

In case you're unfamiliar with this post, it happens every week. We've all been through some highs and lows, but we really want to focus on the highs today, no matter how high or low they are. So we celebrate together, shamelessly sharing the highlight of our week, also known as our Win of the Week.

And because we're party animals, we don't just celebrate one win, we celebrate two! We distinguish between our "real" lives and our "digital" lives, because sometimes, we forget that they're separate and we need that reminder. So two it is!

Personally my real-life Win of the Week would have to be my workout on Tuesday. I'm in the middle of a running schedule I found that is perfectly suited for someone like me. The first week was all walking. The second week introduced a little jogging.

I was absolutely terrified of running. I haven't been able to run at all since early college or high school - my lungs haven't quite been up to it. However, I didn't let that fear stop me from trying...

And I nailed it!

I ran for a minute straight, followed by 3 minutes of walking. And then did it 4 more times! It felt incredible. And I know it seems like a very, very small step, but for me, the mental hurdle of running has been huge. It was an incredible release knowing I could do it. So I did it again on Thursday!

It was amazing.

Meanwhile, my virtual Win of the Week occurred yesterday. Recently, I've hit a wall in blogging. I get about the same number of pageviews/visits every day, regardless of what I post.

Yesterday, though, destroyed that rut. Obliterated it.

Yesterday, I shared my story, along with the stories of my wife and mom, about my journey with a chronic illness.

More than anything, I desired exposure for PCD, because the more people are aware of it, the more can be done for those of us with it. And it was huge! I had quadruple the pageviews of a typical day (which still isn't a lot - don't get me wrong). And I appreciated each and every hit I received - I imagined every single one of those as a person learning about PCD for the first time, and it felt incredible!

So there you have it! Those are my Wins of the Week!

... ... ...

What about you? What has been the highlight of your week? Anything exciting going on with your blog/website? Feel free to shamelessly share a link or two in the comments section, along with your other Wins of the Week!

Our Story

We all have several narratives that define our lives. Some involve our parents, others involve our spouses. For me, one of the defining narratives of my life is my journey with a chronic illness.

However, this is not my story. This is our story, because I've never been alone in this tale.

This is the story of how God has wrecked and rebuilt the lives of my mom, my wife, and myself through PCD.

... ... ...

This story wouldn't be complete
without these two by my side.

The beginning of our journey with PCD was rough, as it is with most people. Thankfully, I received my diagnosis around age seven or eight, but that was not until my family and I had already experienced immense pain. My mom, Brenda Grow, had this to say about my life, pre-PCD: “At 6 months of age Adrian started throwing up his milk and arching his back. We took him to the doctor and ended up he had spinal meningitis… They proceeded to do x-rays then and realized all of his organs were reversed! What a tailspin! Literally!”

At such a young age, PCD was nearly impossible to diagnose. However, the telltale sign of situs inversus (total organ reversal) was present, as well as hydrocephalus (“water on the brain”), a disease that may be connected in some ways to PCD – research is unclear about it at this point. It was not until I was older, around kindergarten-aged that my mom started to notice other odd symptoms. “Many mornings, we would be standing together at the bus stop and Adrian would cough until he eventually threw up mucus. After throwing up this conglomerate of yellowish-brownish goo he felt much better… this was a great cause for concern.” As a child, I personally knew something was different. I felt like I had what other kids called asthma, but mine seemed a lot worse, and I had a lot more doctors and medicines than the rest of the asthmatic kids.

Our road to diagnosis was long and difficult. Through infant spinal meningitis and my morning cough-fests, something was not right. According to my mom, our family doctor agreed, and began by running allergy tests on me. Upon discovering my allergy to mold spores, my doctor referred us to a pediatric pulmonologist, who he said would then narrow down the problem to something more specific. This led to an original (and typical) misdiagnosis of asthma. However, we could not quite get things under control, like most asthmatics could. We continued testing, including sweat chloride tests for CF, but nothing was returning positive. Somehow, someway, my doctor stumbled upon my original diagnosis of immotile cilia syndrome, which we now know to be a misnomer for PCD. And though we now know this mystery illness’ name, it still is shrouded in confusion. My wife of 3 years, Kalyn Waller, gave us these insightful words: “The journey for diagnosis seems to still be going on. Although he got diagnosed as a kid, before I ever knew him, it seems like all of us, including the doctors, are still figuring out what’s really wrong with him and the effects it has on him and his life.”

Originally, finding a doctor was not difficult. The first referral our family physician gave us was golden. My pediatric pulmonologist was a determined woman, and she would not give up on me, regardless of how sick I got. She tried every trick in her book, including keeping me under her watch until the day I turned 19, a year later than typically permitted. However, since then, doctors have been a dime a dozen. Kalyn puts it well: “It’s difficult to find a doctor; it’s even more difficult to keep one. They only have so many ideas and so it seems in order to stay healthy you have to figure out when you’ve used up all of their ideas and move on to someone else.”

Since my diagnosis, I have “used up” several doctors and their ideas. When I turned 19, I was transferred to an adult pulmonologist. He seemed smart, but he did little to nothing to care for me – no antibiotic regimens, nothing. After half a year, I lost my insurance because I got married – the new health care laws had not taken effect yet. It was all downhill from there. I only saw him a few more times, when I was willing to shell out the $300+ for an appointment, where he would literally tell me: “I’m not sure, maybe you should go to Canada.” No joke.

At the time, I did not mind his unhelpfulness. I did not know that PCD required such active care, and in my teen years, my lungs worked pretty well – I was able to exercise vigorously and play sports as I wished. Someone told me around this time I should try applying for disability. I did and was denied, and thought nothing of it – I could still do anything I needed to.

It was not until a few years into college that I had hit my breaking point. I could no longer carry my backpack without having to sit and wheeze and cough for 5 minutes afterward. I could barely climb stairs, and I was no longer able to play sports with my friends – our main method of socialization. I was an 85 year old trapped in a 21 year old’s body.

Thankfully, my in-laws were introduced to a doctor in town who was new and practicing what he described as “concierge” medicine. For a monthly fee, he was available 24/7 to his patients. It sounded like it was worth a shot, so we called him up and set up and appointment. During this time, I finally decided to re-apply for disability – I figured I had a shot since I could barely walk.

After meeting with this new doctor, a family physician, he had a lot of great ideas that I had not heard before. He was able to consult with a pulmonologist to fill in the gaps in his knowledge, and he helped me to secure my first inhaled antibiotic treatment – nobody had EVER told me that it existed. He also told me I should be sleeping with oxygen – the difference was night and day after that! No more debilitating headaches after waking up!

Eventually, I was approved for disability insurance and was able to go through 3 weeks of IV antibiotics immediately following a month of TOBI. This really kicked the crap out of my infection, and set me on the course I am on today. After getting insurance, I stopped seeing my concierge doctor – he had exhausted his ideas for me. However, he encouraged me to seek out the pulmonologist he had previously consulted with to become my primary caretaker for my lungs.

Since then, I have seen my current pulmonologist three or 4 times. We have been on a quest to help me gain weight – I used to weigh 110 lbs (and at 5’8”, that is nothing!) and now I weigh 140 lbs. It has really helped my body to utilize oxygen better as I have gained more muscle over these recent months. I recently ran for the first time since early college/high school – that was quite a milestone for me, even if it was just for a minute. But as I am seeing, fighting PCD is all about baby steps. After all, taking baby steps over a lifetime can lead to a huge change.

Living with a chronic illness is not for everyone. It takes a toll on a patient’s life, as well as on the lives of those around him. When asked about the impact of PCD on her own life, my mom expressed feelings of overwhelming fear, especially of the unknown. “The impact of the diagnosis for me at first was overwhelming in that I wasn’t aware of the extent of danger this diagnosis was and didn’t know enough to be either scared or leery.”

Meanwhile, PCD has affected my wife personally as well. She says, “PCD takes up a lot of time. I have to take over doing things that he normally does when he is not feeling well. It makes it difficult for me to be tired or sick when he’s not feeling well.”

These are situations which doctors are often unprepared to address. It may be routine to address fears of a patient, but a patient’s family experiences many of the same fears, in addition to other feelings of helplessness and desperation. Personally, the biggest impact PCD ever had on my life was during my freshman year of college. I moved away for school and was living in the dorms. It was incredibly difficult to keep up my medical regimen during this time. Whenever I was awake, I was either at school, doing homework, eating, or hanging out with people. I did not want to be stuck doing the VEST while others were having fun, especially if others were around. It was embarrassing and difficult to have to explain to every single person who walked by my dorm room why I had so many machines and why I had to use them so often.

Now, more than ever, PCD seems to wreak havoc on my personal life. Many of my friends socialize by playing sports or going on adventures – many of which I am unable to participate in. I am an adventurer at heart. I love doing things – physical things. I always want to be doing something, but that has really changed these last few years. Now, I am too tired to move at some points in the day. Luckily, I have picked up other sedentary interests, such as blogging, reading, and playing video games. However, it really stinks that I cannot be outgoing and adventurous on a whim, like I truly want to.

On a more personal level, PCD has also affected the way we are choosing to start our family. We are planning on adopting and possibly becoming foster parents in the near future. However, my wife and I both are concerned that agencies might reject us outright because of my condition. I want nothing more than to care for children who need a home and someone to love them; it would be devastating to discover that PCD might take this dream from us.

The future for my life, especially concerning PCD, is both scary and exciting. My mom and wife echo these sentiments as well. My wife expresses a few desires: “I’d like to be able to more clearly understand what’s going on. I’d also like for more treatments to be available so he can stay healthy and live as normal of a life as possible.”

My mom’s concerns are very similar. “The biggest fear for my child of course, is his own life. My hope for Adrian is that he will live a normal life span. The reality of the PCD’s impact on him cannot be minimized; hence why I cannot say ‘healthy’ life span along with normal. . My hope is that he is able to get the treatment as needed and if at some point in time he may need a transplant, then my hope of course is that he is able to do that.”

Personally, I am not sure what to make of the future. My biggest fear is leaving my wife too soon. I know she knows what she signed up for when we got married, but it has all happened so much more quickly than either of us thought it would. It is terrifying to think there is a possibility that my life might be shortened, but I am optimistic; I think I will live a full, lovely life. But that does not mean the fear does not creep up from time to time.

Eventually, I would like to find more therapies and/or treatments to help manage my health. I would also like to find some sort of exercise regimen suited to my particular strengths and weaknesses, one supported by research to help maintain lung function and capacity. Ultimately, I hope that eventually, whenever I do get a lung transplant, I might be able to breathe again. But more importantly, I hope that I will live as long as possible, without complications, transplant or not. The future for us is intimidating, but not nearly as intimidating as what we have already overcome together.

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This story isn't exhaustive - there are several others who have joined us in this journey and who I wouldn't be here without.

Ultimately, it's important to realize that regardless of what narrative we're living, we're never living it alone.

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Questions: What narratives have defined your own life? Who has been by your side through your journey? How has it affected them?

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