Afraid to Blink

 

As we learn with each passing year- seconds quickly turn to hours and days become weeks making our lives seem more like a flash. Laughter heals heartache, seasons fill sorrows, all meanwhile love teaches lessons. The final month of the year causes us to pause and reflect on what our year has been and more importantly what our life has become. Who we have grown to be or who we grown not to become. The new challenges we have faced versus those we have chosen to confront.

As the rest of you all, I find myself anxiously peering at the calendar as December winds down- counting the hours until the 'clean slate'. I would be fibbing if I said I didn't like the idea of a fresh start to experience better growth, better joy, better love..."better". That is, after all, what we desire- yes? A better life, a better thrill, a better sense of pride and assurance that we are doing what we feel we are capable of achieving.

Gratefully so, this year has been one of confusion, pain, loss, and grey living. Did I seriously start that with gratefully so?! I swear I haven't lost it completely...yet. I experienced loss of my hard shell, unstoppable attitude and resilience to illness. Instead, each month brought a new level of pain both mentally and physically. I lost well over 20% in lung function due to not respecting life. No, that's not it. I lost over 20% in lung function due to wandering from my fighting attitude, desire to be better now and being tired of fighting. Heard of being sick and tired of being sick and tired? Yeah, it's real.

I suppose that above all else, I have experienced what true resilience looks like. Smiling through pain, feeling overwhelming emotions, and ultimately saying "yes" because I choose to do so. There will always be obstacles we are faced with and pain we are forced to experience. But, (and there is always a but) in the blunders lies the beauty...until we experience the sensation of pain we do not fully grasp the impeccable sensation of living.


Being fearful of blinking and allowing time to pass is like being so afraid to experience pain that we never truly live. 

BLINK ON. LIVE ON.

Making Light of a Storm

It is remarkable how one year can completely transform your life. Well, what I should say, is that it is incredible how much life can transform in one year. The year of triumph is also the year of challenges, pain, struggle, suffering, doubt, and heartache. But like a storm, when the crashing of the waves eases, there is only serenity and subtlety.

From last spring until now, my life has seemingly been a series of crashing waves. Violently splashing its water against the rocks, it often felt that I was pinned between rock and thrashing waves, hardly able to gasp for air between the moments of violence. From the death of a fellow CFer, to my getting healthy enough to train for long distance runs and then it abruptly stopped with the birth of a double lung infection, to losing all previous passions and interests, to resigning from all involvement on campus, to getting another lung infection, to catching a severe virus, to being hospitalized, to struggling to maintain relationships and friendships, to feeling isolated, to being forced to drop a class, to changing jobs so I wouldn't have to hear that my friends commenting on not seeing me for months, to finally coming to the conclusion that taking a year off from school is essential to keep any remaining sanity.

Major decisions, such as taking time off of school and not graduating with friends is just one aspect of life with CF. As I tend to express, it [CF] is an incredible blessing and curse. It has allowed me to cherish every good thing that comes my way rather than focusing on the list above. The point of writing the list is to show that beautiful, peaceful, and sunny days only come after the storm is gone.

Live for today and find the glimpses of light...for even as it storms, the sun finds a way to shine through the thick clouds.

A Growing Perspective

 

To say that life is frightening is an understatement. We are continuously faced with new dilemmas, situations and opportunities which cause us to stop and ponder our surroundings and environment in a way that changes our perspective. If you think about it, everything is perspective. How we perceive the land around us, the people we interact with, the new (and hopefully) exciting opportunities that come our way, etc. are all defined and impacted by the lens we limit ourselves to. What would happen if that lens shifted even in the slightest? How would the world as you know it shift?

Recently, I've confronted myself with such thoughts. Knowing I have the power to shift my lens at any given moment has been a powerful tool for me to drastically alter my life. Officially deciding to take a year off of formal education to become educated on a worldly basis will be incredible. Being the voice for a community which such desperately needs a voice, will be incredible. I have been blessed with opportunities which have allowed me to expand my spectrum, creating a mind that is open to the world.

How will you having an open mind change your world?

Do What Matters Most

If you had 10 days to live what would you do?

 Would you attend events? Go on a crazy adventure? Eat all of that junk food you previously avoided? As bizarre as it may seem, many terminally ill individuals ask themselves this question regularly. Where some may see this as being dark and dreadful thoughts, I view the question more of a speck of reality. Despite constantly asking myself this question, I have never had a solidified answer. Would I visit family, friends and people I grew up with? Would I capture every moment with photographs? Would I skydive? Or would I simply live an average day? None of this was clear. Until I asked the right person, the person I love most. It appeared as though my answer was right under my nose the whole time. Despite constantly being told that beauty is found in simplicity, I often find myself lost soul searching in the most complex of places. Yet when I return to simplicity, I find true happiness. For instance with my last 10 days I would:

1. Marry the love of my life on the beach, and celebrate with family and friends, rain or shine.
2. Soak up sun rays while hiking and water rafting.
3. Record video messages of love and zest to 20+ people. 
4. Visit with other terminally ill patients in the hospital.
5. Write a movie script
6. Jump off of a cliff and be a beach bum
7. Create a video diary of my life
8. Deliver a speech of the pure joy of being terminally ill.
9. Write a witty speech to be read at my funeral to make sure the only tears are from joy.
10. Watch a sunset with my closest loved ones.

Whatever you would do in your last 10 days, remember the simple things. The sun hitting your face. Holding the hand of the person you love most and being childish for no reason. Living with a light heart doesn't have to be only for 10 days. Do what matters most to you.

Chronically Brave

Courage often is tested when we are forced to face the most difficult of situations. For the chronically ill, this is more often than not in the form of a hospital visit. Forcefully moving your feet along as you trickle down the bare white walls awaiting yet another test to describe your progress over the past few weeks is more daunting than a philosophy exam, and yes, those are frightening. Being a full time student and patient is a different experience than most are used to but in my opinion is the most rewarding. Escaping campus for the hospital, and then the hospital for campus allows the mind to never know what to think other than enjoy the bouncing back and forth. It's an odd life but it is the one we live together. We are strong. We are bold. We are brave. 

Keep Moving Forward

"We keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths" -Walt Disney

It is in our darkest moments where even the dimmest light is significant. The idea of making progress when we are overcome with frustration, pain, and fear can be paralyzing but these are the moments in which decision is made as to how we will be defined. Just as giving in is a choice, so isn't being relentless in the belief that triumph is inevitable with hard work, determination, and perseverance. It is not that we do not possess the ability to fight back and be victories but that we merely make the decision to do what is easy over what is, in all actuality, right.

Just as we walk along a board walk and soak in the ocean's dew like a sponge, the people we surround ourselves with make a lasting impression, as we soak in their actions, words, and motivations (or the lack there of). Remain mindful of who you select to spend your time with and take a reflective moment to ask yourself if they are supporting or limiting your growth. Regardless of which outcome you choose, remember it was you who made the choice. Don't lose the hunger of achieving what it is that you are capable of in fear of standing out. You were born to stand out and not be average. Go down the new path in which your curious mind leads you and don't look back. Keep striding towards the sunrise and when it's time for it to set, prepare yourself the the gift of light in the coming day.

Alone?? Perspective Check!

Are we truly ever alone, or do we just convince ourselves that we are? Maybe it's the work done by the little devil on our left shoulder or our insignificant self-conscious self within piping in her two cents when we have deflated a bit and it is easiest. Either way, the question stands. Do we create barriers, blockading ourselves from the world because we perceive it as being easier then just putting forth the energy of a simple smile or friendly hello to engage in conversation? It's hard. It sucks. It makes us all roll our eyes. But why? Why is it acceptable to give up on ourselves- our goals- our dreams- our true desires- when we are drained of energy, are sick or when our days have just turned to complete and utter chaos?

Truth is, like anything else, we plant these feelings in ourselves. We choose to let that little devil appear and whisper sweet bullshit in our ears- better yet, we eat it up. Wanting to believe that it is impossible to always 'stay' or 'act' happy, that no one can truly be that overjoyed with life. Why not try? Why not put down that bowl of ice cream or easy-mac on a bad day and say "is this actually helping me- long term?" Best of all, I bet you justified it, huh? "Well today is really rough, and...well....I just need it." Bullshit. I've been there. I've said it but that self talk is as good as your little devil. Love yourself to tell yourself you're better. Say it out loud. Three times. "I am better. I am better. I am better." You may be thinking this is utter crap. You may be thinking what does an eighteen year old know about life. Maybe something, maybe nothing. Depends who you ask. What I am certain I do know is that sometimes we all just need a little insight. Whether your battle is minimal or monumental, it is still a battle. It still takes strength, perseverance and focus. And it is in these battles that we often find ourselves lost and in need of a little kick perspective check. So, if it's diet/exercise, a relationship, academics, an illness, etc. then my advice is to do what needs to be done--and with a smile; a smile always makes you feel better and your heart ache less.
Keep it simple. Keep it light. Keep it real.
...and always remember, you're not alone.

- Kate