Weather the Storm with Joy

It has been a minute since I last blogged. Truth is, I’ve meant to. Truth also is, I’ve started three different ones yet cannot bring myself to finish them. Call it writers block or what you may, I just know I’ve struggled to set my words and feelings in stone for what is on my heart. As we begin each day, read the news, witness what is happening right now, it can be exhausting. We are all feeling it navigating this new “normal” way of life. Trying to keep our minds and bodies preoccupied while continuing to simply… exist. You may feel like the human connection is fading with every sunrise and sunset. I honestly feel we are growing closer together. We are living life in “social / physical distancing” and we have to. I hope everyone is doing their part and staying home as much as possible. Stay healthy. Stay at home. Please do your part in helping to flatten the curve. Never in my darkest of nightmares did I imagine a worldwide pandemic take place during my lifetime. I cannot wait to be able to look back at these days and breathe a sigh of relief for it’s ending.

For myself and others living with Cystic Fibrosis, or any chronic illness/condition, this isn’t uncharted territory. We are more than familiar with the terms “6 feet apart,” staying away from people when we are sick, when others are sick and distancing ourselves from social gatherings. We’ve been doing this most of our lives. We are experts in prevention. We know what being isolated and practicing physical distancing feels like. Imagine spending weeks in a hospital just to get your lungs back to “baseline,” or weeks to even months at home on IV antibiotics avoiding the public as much as possible. We understand it. We are in a way, more prepared for what is happening. Most of the world is being awakened to this isolation. Believe me, we are grieving just as much as everyone else. We miss our “normal” lives, seeing family and friends, giving hugs, all the human to human interactions and touch. It is worrisome.

Crazily, it has been a little over 5 months since I started Trikafta. I continue to feel good. (I better knock on wood and blow a kiss to the heavens). My lungs feel stronger, along with my voice. There is still an overall silence that accompanies me. My mornings remain effortlessly unreal. I have a new determination: to maintain half marathon distance / fitness level. This goal was one I was able to do in 2012-2013, but my lung function was higher than it currently is. My strength is found in setting this type of goal and to work hard to achieve it (until the rest of my body physically dictates different). Whereas in the last 4 years or so, it would have been much more difficult. It is also my way to escape CF, to escape everything, all while feeding my health and wellness. So, if you hear about me still running….you bet your life I am.

Not only am I experiencing all the emotions with being on Trikafta, my thoughts are all over the place given this bizarre and twilight zone haze we are all currently living in. However, I am also experiencing a heightened sense of unfamiliar comfort. I am honestly holding onto this with all my might. When I stop and think about timelines, it is incredibly ironic to me how this life altering genetic modulator was FDA approved 6 months earlier than anticipated. And now, we have this relentless virus COVID-19. If I wasn’t on Trikafta, my fears for my health and my anxieties would be on a higher level in the midst of this storm. The question “…how is this fair for me to feel this way?” consumes my mind as well. I can’t allow that question to control my every thought, but it creeps in. I feel so fortunate. I am beyond grateful. I am constantly clinging to the hope for all of us living with CF to have access to a genetic modulator. Sooner rather than later.

Despite this safety net contentment (if you will) of Trikafta, sometimes I wonder… when is this going to end? When will the jinx come? If I were to catch COVID-19 would I be prepared and have the strength to battle it? I don’t know. I recall days where I have fought and conquered numerous infections, even prayed for my life to be taken as I couldn’t handle the lung pain anymore…and yet, I am still here. Asking those ‘what if’ questions only brings me into the pit of despair. It gets me absolutely nowhere. I must focus on how far I have come, how far I’ve yet to go, and look at where I am presently. “You haven’t come this far to only come this far” echoes in my heart. Remaining in the present has never been more important to me as it is these days. Each day feels the same, yet they are not. Days run into each other, time even feels like a strange culmination of colors blending together on this chaotic canvas before me. Just focus on the here and now I tell myself. I eagerly look forward to seeing the “greener grass” when this is all over. It has to be there. When it reveals itself, I’m going to sprint to it…feel it between my toes as I glide across it with each step. With open arms I will run to give my parents the biggest hugs, to all my family, my friends and possibly never, ever let go.

As we live and breathe, try to remember to find joy in anything you can. Things that help me by providing peace and keeping my sanity in check: my forever therapy in running, (physically distancing myself safely) riding my bike on the trainer (for now), walking my dogs, eating all the foods, trying new recipes, cleaning/organizing, enjoying my first cup of coffee in the morning on the back patio, listening to the birds sing their melodies, buying yarn to finally learn how to crochet, a not-so new yet new and exciting journey in singing, (so much singing!!) and video chatting and/or phone calls with friends/family as often as possible. It may sound corny, but those who know me well know I strive to seek joy and all the goodness it brings to my heart.

In the middle of this pandemic, I encourage you to do the same. The other day, my joy was found in my dog being the biggest goof rolling around on the bed with her tongue sticking out. Another day it was a video of my dear friend’s 10 month old baby boy giggling. Yesterday, the joy revealed itself in a beautiful double rainbow after a magnificent thunderstorm. I do believe joy is always there, we just have to seek and find it. I am trying. We have to believe greener grass exists again on the other side of this. We just have to. On the other hand, remember this saying as well “The grass is also greener where you water it.” All my love to each of you now and always. Stay strong. Do get outside (safely) and enjoy the fresh air. Find the beauty in life. Lift each other up. We will get through this.

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