Holiday in the Sun

I come from a family of devoted vacationers. Like those before me, I thirst for a relaxing and equally exciting break from the hustle and bustle of modern living. For me a vacation is a period of time set aside to heal and rejuvenate my body, an opportunity to post better Instagram pictures (Kidding…or I am?), a warning to cease all calls with the insurance company and pharmacies (I know they’ll miss me), and a moment to just enjoy being alive with the people I love most.

My husband Peter and I just returned from a break with my family in sunny Florida. We had a great trip, and it’s bittersweet coming home and jumping back into the reality of our lives. All those phone calls I didn’t make were still waiting for me as we drove home, but I missed my cat so by the time we hit the Ohio state line I was eager for familiarity.

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Here’s my guide to vacationing:

p a c k i n g

Preparing for vacation with CF is an unique adventure to say the least. When packing, I usually gather all my medication and equipment first before packing any other items since they are the priority when space inevitably starts to run low. On this trip, I brought both my vests, two weeks of medication in a 7-Pack pill box, two nebulizer machines, six nebulizer cups, extra nebulizer tubing, a mini sharps container for needles and diabetes lancets, my glucometer and supplies, microwave sterilizer bags to clean my nebulizer cups, and the rest of my human things.

Am I too prepared? I understand it sounds a little extreme to bring two nebulizers, but I can’t explain the sheer panic that wells up in your body when your nebulizer dies while you’re out-of-state. Been there, done that. #neveragain

I wouldn’t consider myself a light packer. Yeah, I am pretty sure I am the complete opposite of a light packer. It comes with the territory of a chronic illness and someone who owns six bathing suits. It used to bother me that I could never spontaneously pick up and wanderlust my way through the world (I could but we would have to strap my vest to Peter’s back, and that’s just cruel and unusual punishment).

Now I realize, I still have the physical ability to leave as long as I bring my “baggage”, and that’s all that matters. You have to learn to adjust in life. For me, bringing all the necessities stings less when I remember my friends with CF on the transplant list not being able to venture beyond a 3-hour radius of the hospital. I am grateful for my freedom, as always.

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t r a v e l i n g

Since we decided to drive to Florida and would be stuck in the car for extended periods of time listening to the audio book, The Life We Bury, I had to do my treatments on the go. Using the cigarette lighter with the help of a power inverter to complete my nebulized drugs, I used my Afflovest which is battery powered for therapy. Each time before turning on the nebulizer, l silently prayed I wouldn’t blow up Peter’s car en route. I just know that wouldn’t be a good situation for our marriage. Also, the Afflovest looks like a throwback early 90s child life jacket, and I am positive the nearby cars thought I was sporting just that. My advice to myself: throw them the peace sign and crank up Justin Bieber. #belieber

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t r e a t m e n t s

One of my favorite times during vacation is sitting down each morning, coffee in hand, to do my treatments in the sun. Something about the change of scenery makes the entire process a little less daunting and mundane. I am always rushing during my normal routine, so the chance to leisurely complete my treatments surrounded by my family members seemed like a vacation in itself.

I warned my family prior to our trip that we would be completing one page each day from Start Where You Are: A Journal for Self-Exploration (Meera Lee Patel). Most members obliged during morning treatments, and it was so great to hear about everyone’s hopes for the future, what they valued most, and their perceptions of themselves. I enjoy learning about people in anyway I can, so I really love how this book allows you to ask the important questions.

t h r e a d s 

If we are being honest with ourselves, CF bellies are the absolute worst. I’ll never understand why scrawny arms and legs are partnered with obvious stomach distention in this disease. For all the coughing we do, we should be rewarded with rock hard abdominals. That’s not reality, though. Oh, well. To give myself a waist and the illusion of hips, I rely on wearing high-waisted bottoms while combing the beach or relaxing in the pool at the house. They are the absolute best when mixed with flash tattoos that even my grandma loved sporting on the beach. #buddahbelly

Just below my top on my rib sits my portacath as part of my tropical uniform. I know people probably stared and were left to puzzle what purpose the bionic bump serves. Truthfully, I am more indebted to that port for helping me than I will ever be to a stranger’s critical eye. It’s important for me to remember that. So, I wear my port with the utmost pride because beauty is not only skin deep.

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h e a l i n g

Even though I had taken time off from work, adventured on kayaks, and spent most my days collecting freckles in the sun, the reality is that a vacation from CF just doesn’t exist. About half way through our trip, I felt my body beginning to break down and slow down. Due to breathing in the naturally salty air and too much mermaiding (probably), Wednesday night I started coughing up blood which is very normal in CF, but less normal for me. My mom, who can detect my unique cough in a grocery store during flu season, came into my room and suggested it was time to drink tea and rest. After a night in bed reading A Life in Men (Gina Frangello) and stopping my inhaled sodium chloride treatments for a couple days (CFers inhale salt water to restore moisture in our lungs and help clear them), I felt better and restored.

Slowing down and yielding to the healing process of CF, especially on vacation, can seem impossible. I suffer from an extreme case of FOMO (fear of missing out) with my family which causes me to push myself, sometimes beyond my limits. I am still learning to find the right balance between experiencing, managing, and healing in my little world of chronic disease. A holiday in the sun always serves as a good reminder to slow down and enjoy your time doing whatever you are doing. Embrace the JOMO (joy of missing out).

Thanks for a great trip, Florida! I miss my family, the dolphins, and early bird karaoke already. The restoration before the busy spring and summer is exactly what we needed.

Flowerlungs

It’s one of those heavy days, and I find myself lost in thought as the IV pump alarm fills the stagnant silence in the room. The only other audible sound is coming from within my lungs serving as a constant reminder of the setting of my reality. The air is unmoving and the shadows crawling from the corners are drawing closer to me under the fluorescent light as the evening passes. The shadows are eager to steal my warmth—they try endlessly, using the slow passage of time in the hospital room to their advantage.

I hear a gentle knock reverberating from the far side of the thick door as my mom pops her head in just slightly to say hi. The door glides open and in one hand she brings a lovely bouquet of life-giving flowers; in the other hand, a bag containing food from outside the hospital walls that I desperately desire. She quickly lays down her belongings and walks towards me, still wearing her own set of scrubs invisibly soiled from her own set of patients, to kiss me on the forehead as she asks, “How is my girl?”

As quickly as it appeared, the darkness evaporates into the light and the thick silence is traded for merry chatter. The flowers stand on the counter and gleefully whisper affirmations of joy, support, and splendor into my soul and all feels right again.


Spring is upon us and I am feverishly anticipating the growth of new life and my favorite by product of the elements: flowers.

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Flowers have always meant something deeper to me than just futile flora sprinkled over the landscape of our earth. Whether my connection to flowers is an inherited trait passed down from my mom, the same way cystic fibrosis passed from her genetic makeup to mine, or just a hobby that fulfills my soul’s desire of contentment, I know that they hold significance far beyond aesthetic appeal. They continually remind me of the incandescent beauty gifted from our Lord, the oxygen dancing within the breeze, and the immense control it takes to be present and grounded despite the tireless winds. They call my hand to pick, my nose to smell, and my eyes to savor retelling of the enduring capability of a broken body.

Moreover, I have always been under the assumption that flowers are the most powerful creation in nature. They have the capacity to spark restoration within our darkest moments, while simultaneously signifying every triumph or celebration in our lives. How is it they have the weight of such influence to do both? How do they illustrate both realms of sorrow and happiness? I am unsure. But, their passive strength is something I admire and something I aim to embody within my own existence.

Within my lungs due to cystic fibrosis, thick paths of scar tissue marble through chronic infection and reactive inflammation making it more difficult to breathe as time passes. There is a strong force feeding from the resources within my body, and it takes what it wants and leaves it’s mark in the form of perpetual damage. The reality is that my organs are struggling at the hands of a very powerful disease. I recognize my reality. I know this is what’s occurring within my shell, but it’s not how I choose to see my life.

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What if I chose to believe I am harboring prosperity and beauty by growing flowers within my organs- the very creation I admire so much? As time passes, I cultivate more blooms and they fill the spaces within my lungs and unexpectedly take my breath away- a trade off for their immense beauty. I pluck the thistles and allow further growth, and they fill me with unmatched hopefulness and appreciation. They serve as a mark of both my physical pain and spiritual triumph causing each inhalation paired with exhalation to be a reminder of a blessing. CF is my blessing in many ways and will remain as such.

I’d rather my breath be stolen by prolific blooms, an overgrowth of loveliness and grace, than relish in the reality of my disease. I have learned that true perspective has the power to change the course of your life, the power to smother anxiety and fear, and the power to transform destruction into celebration. I know my fight has really only just begun- I’ll be physically and mentally flooded far beyond what I can imagine in the years to come.

But, I am not afraid because I grow flowers causing my life to be more lovely and fulfilling than ever expected.

In those moments when I fail to produce them myself- when I lack the necessary elements vital to blossom- I know alternatively the people who love me with aid in supplying them. There will be a gentle knock reverberating on the far side of my door and I’ll overhear the words repeatedly said by my mama:

I will always bring you flowers because flowers heal all.

Indeed, they do and all is right again.

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I Am an ENFP

I am an ENFP. According to Myers-Briggs personality tests, I am an extrovert, curious, emotional, a people-person, observant, and a good communicator. I feel others’ experiences and want to know every detail of how they came to be. I am burdened by rigid schedules and lists and tend to live in a state of organized chaos. I am a procrastinator. I am a true free spirit, or at least that is what I am expected to be as an ENFP.

Within the last few months, I have spent a lot of time thinking about how cystic fibrosis has chipped away at certain aspects of my personality causing me to morph into someone I am innately not. Altering insignificant detail little by little, I have seen the transformation slowly creep upon me. I look in the mirror and think of the person I used to be, and I see undeniable differences between the two and then wonder what trait will be whittled at next.

The most obvious difference is the amount of time I spend alone now- something unnatural for an ENFP. I once was a person surrounded by people, ideas, and constant motion. Engulfed in various projects, clubs, and positions, my days were always spent “doing” and “experiencing”. Now, my days are focused on smaller but more time-consuming endeavors such as surviving the workday, taking care of myself, and prioritizing what needs to get done before the fatigue sets in. Social invitations are often turned down in order to rest, and yet, the world and its people continue to revolve without me. Comparatively, I am kept company by my other friends- IVs, breathing treatments, pills, and fatigue- that have long overstayed their welcome, and it is a continuous disagreement between my mind whining to go out and my body pleading to slow down.

For any ENFP, the fear of missing out and isolation is a difficult pill to swallow (CF puns, anyone?). However, self-awareness has become my redemption. I know I get lonely in the evenings doing my treatments, and so, the cat habitually joins me, Peter will lie in bed next to me and read because talking over the loud machines is difficult, I text or message my close friends, and I watch TV or write. I do things that I enjoy and that connect me in some distant way to my friends and family who are out there, and in my mind, dancing at some glamorous party that is catered by Chick Fil A. When I get the chance to enjoy social time with actual 3D people, I soak up each moment. I am present and engaged, and my heart is full for a significant amount of time after.

Apart from the amount of time I spend alone, the way my time is organized is different. I am tied to a schedule now, and my mind is a chorus of continuous mental alarms. You try taking 20 different medications a day, hours of vest therapy, and managing finicky blood sugar; you would need a strict schedule too. Naturally, I don’t thrive on a rigid schedule and it has been a humbling learning process for me over the last decade. My mom can attest to this and has numerous stories of middle school and high school Janeil not doing what she was told to do and when. My excuse back then: I wanted to be free. Even now, there are days when I walk over to the massive kitchen drawer (you know, the one meant for silverware and kitchen tools) filled with my daily medications, open it up, and just stare at it. I can feel my body wanting to shut the drawer, erase the responsibility from my mind, and walk away to pursue something else spontaneously, instead of doing another round of therapy or choking down another handful of pills. I also know that if I did this and ignored my schedule, I wouldn’t live. Weeks filled with schedules, lists, and mental alarms are a matter of life and death for me. So, I comply, sometimes begrudgingly and with an ungrateful heart.

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This all sounds so discouraging and if I am being 100% honest (which I promised to be), sometimes it is. It isn’t easy to watch yourself morph into an unfamiliar version and accept it without loss. I know that because of these changes, I have been forced to grow as a person and I have been taught flexibility and adaptation. I have been given the opportunity to look inside and become self-aware to the point of knowing my God-given typology and the person I am forced to be in order to survive, while recognizing that those two people often do not match up. It is a continuous learning curve- a process, a failure, and a lesson learned- and I am thankful for grace and tomorrows so that I can get it right some days. Under the layers of CF, tiredness, and overwhelming responsibility, I know who I am: an ENFP who loves people, who enjoys moments, and who has become free in a different sense of the word. My hope is that I will be given the strength to continue to be her in spirit long after CF has taken over my shell.

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If you don’t know your own Myers-Briggs personality, take this test and learn more about why you are the wonderful way you are. Feel free to post your personality type below!