8.23.2012

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.

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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?

Did you enjoy this post? If so, I'd appreciate you subscribing to Life Before the Bucket and sharing it with your friends. Thanks a million for reading!

8.21.2012

More Than a Father

Note from Adrian: This is a guest post from Victoria Shockley, a young up-and-coming writer. Victoria is a sophomore at North Carolina State University with a major in English and a minor in French. She likes to write, read (especially science fiction and classics), and travel. Follow her on Twitter (@Victoria_Writes) or connect with her on LinkedIn.

... ... ...

“Any man can be a father, but it takes someone special to be a dad.”

Most people have someone they can go to when they need help, and that person is usually different as one grows older. They have someone to help with homework, offer advice on which classes to take at school, and give suggestions on choosing a career path. They have someone else who can offer religious guidance and answers to life’s difficult questions. They have someone to talk to and provide them with comfort when they’re lonely, and someone else to whom they can sit and talk for hours and just have a good laugh.

For me, my dad is all of these people and more.

He has been by my side through every stage of life. When I was very young, I didn’t know any of the neighbor kids, so he played tea party with me and was the voice of G.I. Joe during pretend games with my Barbie dolls. He read library books to me before bed, and told me bedtime stories that he made up himself. He took me to the pet store to see the fish, and brought me along on all of his errands. On “Take Your Kids to Work” Day, I went with him every year and drew pictures on the whiteboard in his office. He helped me learn to tie my shoes, to read, to ride a bike, to skate, to shoot a rifle, and to play Chess.

My dad introduced religion into my life, and gave me my first cross necklace, which I still have. As a child, I was terrified of the dark, and he told me that keeping the cross nearby and having faith would protect me from any “monsters” in the closet. My first use of prayer was for his safety while he was away on business trips for work.

Years later, he gave me my first Bible, and we began having long discussions about the creation of the universe and what awaits us in the afterlife. Whenever I find myself questioning my faith, he does his best to answer my questions and help me understand.

As I got older, he taught me to drive, and he helped me pick out my first car. Whenever it seems like something is wrong, he’s the first person I ask to look at it. The same is true for problems with my laptop. I’ve gone to him with homework questions and for suggestions on essay topics. He’s helped me write a cover letter, a resignation letter, and a resume, and coached me on how to file my taxes and how to give a good job interview.

My dad has been there for me through the difficult times as well. We moved states in the middle of my high school years, which meant I had to start my junior year at a new school in a city in which I didn’t know a soul. Once I graduated, I started college at a university at which I – again – didn’t know a single person. In new situations like these, I tend to be pretty shy and quiet. This made it hard to make new friends, which has led to a lot of loneliness. It’s nice to talk to my dad about it and have him understand how I feel, since he is also having trouble meeting people at his new job here.

Before I decided to become a writer, I had a lot of trouble with choosing a career path. My dad and I spent countless hours discussing my options, analyzing the different majors offered at my university, and debating the best choice for me. I changed my mind a few times, but he always supported my decision and encouraged me to do what would make me happy.

One year for Christmas, I wrote my dad a list of some good memories that I’ve shared with him throughout my life. It was a page long, and he was pleased with the thoughtfulness of the gift. But a single page can’t possibly encompass an entire 19 years of laughter, learning, and all of those little moments that pass by within minutes, but stay with a person for the rest of their life.

They say it takes a special person to be a dad, and I completely agree. My dad is an inspiration to me; he inspires me to do my best, to work hard and go after what I want without giving up. Without him, I would not be the person that I am today. I love him very much, and I appreciate all the little things he’s done for me.

I’m grateful to have him as part of my life, as more than a father - I’m proud to call him my dad. 

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Questions: Growing up, how involved was your dad? What kind of effect did that have on you? Who do you look up to and why?

This guest post was a guest post from an every-day person, just like you! Interested in joining in? I'm still looking for submissions! Just write up a post, or even just an idea, and e-mail it my way!


8.20.2012

Hope Defined

The journey has begun, my friends!

I'm finally on the road to becoming a licensed Marriage and Family Therapist. Only a few small obstacles stand in my way, and I've already overcome one: our so-called Intensive Week.

Our first week of school was, in a word, miserable. We spent 47 very long hours together as we learned, fought, struggled, and eventually persevered through the week. By the end, we were all physically exhausted, mentally fatigued, and emotionally drained. Every last ounce of our energy was spent, but ultimately, it was spent together. And as it turns out, the class which is traumatized together sticks together, much to the sly amusement of our professors.

Several moments from the past week stick out to me, and I could talk for days about everything I've been processing. I could introduce you to the new friends I made while holding down the back row (and maybe I will soon!). I could also ruin every TV and movie watching experience you will ever have, but I like you, so I won't... yet. Or I could share my own personal traumatic experience in our "Clinical Exposure Experience," but I'll save you the pain (for now - I'm still having nightmares about it).

Instead, I want to introduce you to a five-dollar word you can use in Words With Friends sometime. We learned a lot of new words this past week, but this one in particular stuck out to me. If ever there were a word to define who I am, what I believe about myself, and how I view others, this word would have to be it. 

My friends, I'd like to introduce you to the concept of equifinality.

Equifinality reveals itself through a number of faces in our society. For instance, the so-called American Dream, when stripped down, is nothing more than equifinality. Underdog stories, which we've all come to know and love, are equifinality at its finest. The therapeutic model is even based on equifinality. And at the risk of sounding trite, I would argue the heart of the Gospel is equifinality.

What, then, should we make of these five-dollar chameleon of a word?

Allow me to shed some light on its meaning.

Equifinality, simply put, is the idea that, regardless of present (or past) circumstances, two individuals can arrive at the same result.

Our paths may all look different, but our results can
all look the same.
So, when I met the 32 other individuals in my class, they each started somewhere different. Some were upper class, some were lower class. Some were well-educated, while others struggled through school. Some had stable families of origin, while the rest of us came from less than desirable backgrounds.

There is such a diverse background to each individual in our graduate program. It's almost surprising we all ended up in the same place at the same time, seeking the same goal. And yet, here we are!

That, my friends, is equifinality at its finest.

The American Dream, as sick and twisted as it may be (to me), also reflects a mindset of equifinality. No matter who you are or where you come from, you can be whatever you put your mind to be. You can have a spouse, 2.4 kids, a nice car, house, and white picket fence, regardless of where you begin. That's why so many are attracted to the Dream's allure.

More importantly, then, is the idea of equifinality within the Gospel. Each and every one of us, regardless of age, race, or background, has the capacity, with Jesus, to resurrect our hearts and souls both now and for eternity. We may begin in last, but the Gospel tells us we won't finish there. The Gospel takes our dirty, destitute souls, washes them, renews them, and builds them into something better. We may have been unworthy, but the Gospel ensures what was no longer is.

Equifinality, then, is important to all of us. It's important we fight for a better tomorrow. It's important to us that our futures be undetermined, left to ourselves (and maybe a little good fortune). It's important that we can make something more of ourselves and our lives than our heritages dictate.

Can you imagine a world where equifinality was a fairy tale? Regardless of who you are, there would be a specific path set out for you. No matter what changes or choices you make, they're an illusion; the end result will always be the same. There is no American Dream, no underdog stories, and truly, no Gospel.

A world without equifinality is a world without hope. It is no world at all. Instead, it's a play, set in motion by its director, with every part spelled out, every syllable rehearsed. We can improvise to our heart's content, but we still fill a certain set of shoes that don't quite fit, but were picked for us anyway.

It stands to reason, then, that equifinality, in its purest, most unadulterated form, is hope defined. It's life lived to the fullest. Equifinality is the sum of every choice, decision, and happenstance which falls into our laps. It may not all add up, but in the end, regardless of where we begin, we can all end up where we'd like to be (even if it surprises us when we get there).

There's few words so beautiful as this. Hope defined. Hope realized. Hope achieved.

Equifinality, my friends, whether we know it or not, is at work in each and every one of us, and we should all be thankful for it.

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Questions: What are some important pieces of where you've begun? Where "should" you end up when life is all said and done? Where do you hope to end up instead? How are you working toward hope today?

Did you enjoy this post? If so, I'd appreciate you subscribing to Life Before the Bucket and sharing it with your friends. Thanks a million for reading!

image credit: winterdove - sxc.hu

8.17.2012

Win of the Week

It's Friiiiiiiiiiiiiiday!

And goodness gracious, it's about time.

This has been one of the longest weeks of my life. I've spent nearly 30 hours in school since Monday (there's more to come today), and it has been utterly exhausting. But regardless of how up or down this week has been, we've reached the end together, my friends.

And since we've achieved such a great feat, I'd say it's time to celebrate. It's time to pat each other on the back and say, "Job well done." It's time to share our Win of the Week!

Per usual, share as much or as little as you'd like about your week. We like to celebrate our "real life" wins and our "virtual life" wins, but if you only have one or the other, don't worry! We still want to hear how epic your week has been!

My virtual Win of the Week has to be the flexibility and willingness of this week's guest posters. They whipped up some amazing posts with some amazing speed, and even though I was a little (read: very) disorganized, they were still willing to share their writing with all of us. Because of this, I'd like to give a HUGE "Thank you!" should be given to Tessa Hardiman, Jim Woods, and Andi Cumbo!

My real-life Win of the Week feels very obvious to me, and is most likely very obvious to those who have seen me this week. I'm utterly exhausted physically, and really, everyone in our Master's program most likely is. I think I hit that point about two days ago, though, so I'm just excited to still be alive. I might resemble a zombie more than a human at this point, but I'm here nonetheless. So three cheers for surviving the most tiring week in recent memory!

So there you have it, my friends. Your turn!

What has been your Win of the Week so far? Feel free to shamelessly share your own blog or any posts you've written as a part of your celebration! 




8.16.2012

Dream at First Sight

Note from Adrian: This is another guest post, as I'm still going crazy with the start of my Master's program. Today's post comes from Andi Cumbo. Be sure to thank her for her contribution!

... ... ...

I saw the picture, and I knew.  I didn’t even have to blow it up from a thumbnail to see it – this was my farmhouse.

I called the realtor and saw it that day. By the next day, I had put in an offer.  And just three weeks ago, the farmhouse and its ten acres became mine.  

This house, this land – this is my dream.  

I’ve cultivated this dream for 15 years, imagining a place where I could grow my own food – a huge vegetable garden where I’d plant lots of tomatoes for sauce that I’d perfect over years.  A place where I could raise animals – not for meat, but for fiber – alpacas and maybe angora rabbits - and where goats can frolic, not to mention clean up the underbrush.  A place where the people I love – musicians and writers, in particular – can come to relax and rejuvenate.

My farm, I call it.  Qol Dumamah DuQah – the transliteration for the Hebrew phrase God’s Whisper, that voice that speaks so quietly to Elijah in the cave.

The farmhouse is 728 square feet in total and rests on a rise that shows me the mountains of the Blue Ridge in all their weathered beauty.  Up the hill, one day soon, I will build a timber frame house with a huge living room centered on a huge fireplace. The large deck will open onto these mountains.  Then, my father will take over the farmhouse, and people will stay in my guest rooms. Dad and I will build a rustic log cabin, and someone seeking to hermit away a bit can come to rest there.  

My chickens Rusty and Ruby will start our flock, and Meander the bloodhound mix will be the porch dog. Pygmy goats will prance by with alpacas and their handlers, the Great Pyrenees I will adopt.  

I will carve an amphitheater into the hillside so people can play music or read their work. We will drink local scuppernong cider and eat that sauce I’ve perfected poured straight over homemade bread.  

On quiet nights, I will sit on the porch with my legs tucked under an afghan. I will read; I will write; I will pray; I will dream.  

It is so easy to put off our dreams, to say we’ll do them when we have paid off the new carpet or when the kids go to school or when we have enough money.  But what if we never get the carpet paid for, what if the kids never leave home, what if the money never comes? 

 
It’s easy to put off our dreams until the time is “right,” but maybe our definition of the right time isn’t, well, quite right.  It seems to me that sometimes what dreams need is risk – sometimes big, hairy risk.  After all, tiny, tame choices don’t really get us that far.

Right now, I’m still in the process of building up my income as a writer – another risk I took about 3 years ago when I quit full-time college teaching – and in the final stages of editing my first book.  This is not the “ideal” time to be buying property.  Yet still, the place was available now. I could have played it safe and bet that another place would come when I was more “ready,” but I’m a firm believer that the regrets for things you do are so much easier to bear for the things you don’t do.  And right now, I have no regrets of any kind.

I do have fatigue, and the new knowledge that stink bugs live in electric outlets. I have the story of the time a mouse ran over my hand, and a great deal of information about how to remove the smell of cat urine from hardwood – but regrets – not a one.

I’m not sure dreams are things built on practicality. I think they’re built on pillars that seem like they might not hold but can only be tested with wait, like the stones that hold up a one hundred year old farmhouse in the Blue Ridge.  At least, that’s what holds up mine.

What life do you dream into? 


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Andi Cumbo is a writer, editor, and writing teacher who is finishing up her book You Will Not Be Forgotten about the people who were enslaved on the former plantation where she was raised. When she is not removing old carpet or training her new puppy Meander, she blogs daily at andilit.com. You can also follow her on Twitter
(https://twitter.com/andilit) or Facebook (https://www.facebook.com/andilitwriter).
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