Life has gifted each of us with its own unique journey: none greater, or more worthy than another. There being moments in all of our lives that call upon us to evoke courage, bravery, faith, forgiveness, acceptance, grace, and unconditional love. Often times, these are the most difficult expressions of empathy and compassion to show ourselves.
As 2015 is well underway, I can’t help but reflect on the significance of this past year, and the weight and meaning that tomorrow holds. I celebrate what each day has taught me, the amazing relationships it has fostered, the memories it has given me, and the life I so truly want more of. Not only do I celebrate yesterday, but it also makes my heart break: the hurt it has caused the people I love, the life cystic fibrosis has stolen, and the decisions and realities of tomorrow I will never be ready to face.
I find myself reflecting on how I’ve lived each day, the choices I’ve made, the love I’ve been shown and shared, the opportunities I’ve been given, and how cystic fibrosis has made its presence known. This last year has seen its wealth of joy and has been rich with bitter tears: more than I thought were ever possible. The culmination of this past year’s events has brought me to this very moment and readied me for whatever tomorrow holds.
I am no braver than the next, or more courageous. I am simply trying to live amidst the realities that are my unique life and do so with grace. It’s been messy at times, but I will remain grateful for every beautiful breath and moment, no matter how hard. Why? Because they’re all laced with the goodness and love of the most amazing people. I could have never imagined my life as it is today, but it is a unique beautiful journey that’s all my own.
A month ago I was confronted with some difficult questions, a need to reevaluate my life, and the desperate realities of CF. A month ago left me at a crossroads of painfully honest questions filled with desperation, denial, and guilt. What if I don’t get better? That clearly was an option, and we had to quickly confront the next steps if necessary. What if these antibiotics don’t work at all? We were running out of weapons to combat CF, and the ones we did have were losing their impact. How did I get here when I was doing everything right? I felt so guilty for being angry that I wanted more life, when so many people with CF have never gotten to see their 28th birthday. So many people with CF don’t get to live the life I’ve so wonderfully lived, but how desperate I was to go back to the life I had control over. I am still desperate to go back to that life, but I fear it will never be the same again, nor can it, for the mere sake of staying alive. And I still feel immense guilt, especially since right now, I have been gifted with more time.
I think back to the years when CF didn’t even cross my mind. Now, in 2014 alone, I’ve had a PICC line and been on IV antibiotics approximately 205 out of 365 days, taken over 15,000 pills, spent approximately 900 hours (38 days) doing respiratory treatments, had countless X-Rays, blood draws, and have had my body ravaged to the point of complete exhaustion. I can handle all that. What I can’t handle? That I have no control over what’s happening to my body. In the past month, I’ve had to learn more grace and acceptance with myself than I’ve ever wanted to show. I’ve had to mourn a life I had, mourn a future I so desperately want, and come to terms with this shell of a body that becomes more like a stranger to me every day. My life the last month has revolved around surviving: four IV antibiotics; a cocktail of over 50 pills a day; 4 respiratory treatments a day; and learning the delicate dance between exhaustion, conserving energy, “pushing through,” and still living the life I so crave. Through all of this, however, I am most grateful for every breath I am still given. Is this being brave? I don’t think so. It’s me just desperate to truly live.
I’ve had some most incredible moments in my life. Each moment, relationship, opportunity, experience, and conversation has filled me with tremendous joy and made me who I am today. I welcome with open arms tomorrow and all it means. Will tomorrow be easy? No, but it holds such new possibility. It may not be what I could have ever envisioned, but it’s my own unique journey and it’s beautiful no matter the course. I am ready to face all that tomorrow holds.
For now, I am celebrating all the good, the pain, the laughter, and all the tears of yesterday. Tomorrow begins another beautiful day in my unique life. Here’s to each day that calls upon us to be brave, courageous, and share love unconditionally.