Tag: cat

Be Still and Christmas On

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It’s the most wonderful time of the year!

Peter and I decided to put up the Christmas tree this weekend and officially welcome the holiday season into our cozy second floor duplex. If you want my opinion, the tree should have gone up the day after Halloween and we could have enjoyed the twinkle lights, childhood ornaments (including an orangutan and lots of baby dolls), and Sybil’s picturesque naps under the tree for that many more days. Christmas can never come too early in my eyes, but I have learned that certain folk around here have very strong feelings about appropriate holiday timeframes. So, we waited to put up the tree due to a busy schedule and peer pressure. To them I say, “To each their own”, and to me I say, “Can I get a tree for every room?” Ultimately, the answer is no.

Christmas is my definite favorite time of year. Ask any one who knows me and they will certainly agree that my internal clock cycles around Christmas. It is the start and end to my calendar year and what I find myself looking forward to beginning December 27th (the 26th is devoted to post-Christmas depression and only that). As you can imagine, I was itching to decorate the tree. I was eager for the forthcoming nights of beaming warmth that set the scene for my one-woman shows that include Claymation sing-a-longs while dressed in my Santa PJs, novelty socks, and mistletoe headband. That actually happens all the time and I suddenly feel very bad for Peter.

Oh, well.

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After the boxes were awakened from their slumber and brought up from the basement, we stacked the tree, added multiple strings of lights and sprinkled the ornaments about with minimal bickering (newlyweds, can I get a hallelujah?). Then, an unsolicited feeling that has burrowed its way into my body for the last year became overwhelmingly apparent: tiredness. Next, the dreaded mental reminder that I have become sick of hearing crooned: Sit down and take a break. “Take a break” has practically become my mantra this year and I dislike it very much. Honestly, I wanted to keep going, and so I threw a silent tantrum and walked my sorry Christmas-self to the couch and sat down to pout.

It is in these moments that I realize how little control I have in my own body. How I spend my days strategizing and how some days that perfect strategy doesn’t even come close to fruition. It is discouraging. I want to keep up with my husband and prove that I am fine, that CF plays such a small role physically that I am able to push on. In reality, this is far from the truth and my supply of oomph empties long before the project is finished usually.

Still taking a break…

After those negative feelings dissipated and I came to my senses, I heard this year’s counterargument faintly whispered, “Be still.”

To me, “Be still” is an unabridged prompt to the goodness that is my life. Be still means:

Janeil, rest now and enjoy this moment you have been given. Take it all in, smile at the people around you, and be grateful for this day. Be still in your discouragement and worry. Be still in your plan and expectations. Be still in your stubbornness and resistance. Be still in your pain and fatigue. Be still and rest. Be still and know that I am God.

The Christmas tree went up, I rested, and the Savior that is born this month fulfilled the everlasting promise of contentment in my life. I love Christmas for this very reason. Christmas beckons for us to be still. It is a time to cast away our worries and our darkness to focus on the glory and joyfulness of the past, present, and future. I have been abundantly cared for this year, despite my inability to be still. Christmas is a time to celebrate that noble gift and I plan to do just that (in my mistletoe headband).

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Happy holidays, everyone! I hope your homes are filled with peace, warmth, and joy this month and always.

I Am an ENFP

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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!

A New Beginning

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I did it.

I got my act together enough to make this blog happen. If you believe it or not, this blog has been a distant thought for almost 4 years. I continually put it off for when I was sicker, when I had more time, or when I was ready. A close friend was quick to remind me that the blog might never happen if I don’t begin now, in my present where I felt my voice was unnecessary at this stage. She was right. I am just now beginning to be vocal about the reality of my CF on social media after almost 20 years of “being a CFer”. Why? I really don’t know. I think it’s a number of things that have changed my perspective and given me the bravery to be honest and transparent.

First, Salty Girls has played a big part in this change. In April, I posed for a photo book about women fighting CF and the many challenges we face physically, mentally, and emotionally. It was my first time directly meeting other women with CF and knowing that we had similar scars, schedules, thoughts, fears, and never ending coughs. After the shoot, I got in the car with my husband; my heart felt full and I smiled, “They all coughed like me.” It sounds silly now, but that brief sense of community has changed me forever. I feel a duty to my fellow Salty Girls and to myself to educate people about our lifestyles and the bravery the world doesn’t see.

In addition, I am sicker despite my compliant efforts. In college, I did all my treatments, IVs, pills, etc., everything that someone with CF has to manage, but I was healthy enough to compartmentalize my disease and my other life. I lived in two separate worlds and I had enough energy to be present in both, while keeping them as distant as possible. That has changed. I have aged and my disease has gotten worse. Subsequently, my CF is everywhere now. It has grown into almost every aspect of my life and I would be stupid to continue to try to prune it, instead of embracing the change. I can’t eat, breathe, sleep, or move without CF being present. Basically, I can’t exist without recognizing my CF as an important aspect of my life. Every decision, every part of my day, and a very large part of my identity includes cystic fibrosis now.

And so, I am scared. I am scared to write about my life and my experiences with the belief that people might care. I want my friends, family, and strangers to see the reality of living with a brutal chronic disease, but more importantly I want you to see the joy that can persist in spite of pain. I want to put a face to that universal struggle of being happy in your present when things haven’t gone the way you planned. I believe with awareness comes understanding, followed by empathy and lastly, change. So, welcome.2015-10-13_blog-post