Lucia & Life Expectancy

Thirty-seven candles. It can cast quite the radiant glow. One might even say that with each additional candle it gives us the opportunity to see what lies further before us while lighting the path from which we came. Each additional candle inspires an unmatched joy within the eyes of those who are most grateful for such a day. 

December skies & Lucia Lullabies 

December knows a darkness unlike any other. But beneath the crisp clear dark skies of the winter solstice lies a silent hope. A hope that is born from the smallest spark and has the power to pull the senses to safety in a sea of disorienting darkness. It’s that flicker of light we hold onto during the darkest days of this season - guiding our steps and giving comfort to our restless searching souls.

My newest arm artwork- Saint Lucia

On December 13th, just a day before my birthday, the celebration of Sankta Lucia is observed around the world with large celebrations taking place across the Scandinavian countries, more namely the one that is closest to my heart, Sweden. Various stories and traditions surround the mythical figure of Lucia but themes of light and service are at the core of each. In Sweden specifically, Lucia is a symbol of light amongst the dark days of winter. A Festival of Light, St. Lucia is a celebration of the light to come and of light returning to the world amidst winter’s darkness.

And within that very light a hope we endlessly seek.

Lucia, adorned with evergreen upon her head, balances a crown of candles all aglow. She sings a familiar song that echoes through the hearts of her humanity. Bravely, she moves forward into the darkness, one step in front of the other, her arms outstretched embracing the world around her, she bears a light that illuminates a hope set against a season just waiting to see the spark that ignites a new day. Watch and hear the procession here: https://www.youtube.com/watch?v=9LAhw7dqkuc

LIfe-Expectancy

To be completely honest with you, this birthday has been one that has lived within my mind since before I can remember. For many of us in the cystic fibrosis community the number thirty-seven was one we grew up hearing frequently. That number represented progress, potential, and proven hope. It was a light in a world darkened by a disease called CF. During my teenage years and up until just a few years ago the median life expectancy for someone born with CF was thirty-seven years old. “Median Life Expectancy” is a vast and complex web of “what ifs”, luck, and limitations that are not meant to define any individual. Instead, it’s data driven hope made possible through the pursuits of those who forbid to give up on our community. But when much of your life has been set alongside a ticking timeline of life-expectancy, one can’t help but view each added candle with a bit of urgency and anxiety. 

Beginning around the age of sixteen,  whenever December 14th would arrive on the calendar, two conflicting thoughts would permeate my consciousness:

1) I made it! (These three words would become “WE made it”. Afterall, I wouldn’t and couldn’t be celebrating such a day without so many of you). My heart is overwhelmed with gratitude and a depth of love I never thought possible. 

2).” 37”. I’d quickly do the math subtracting the new age from that number - leaving a part of my heart with a heaviness that I had tried all year to forget. A heaviness I’d do my best to hide from the rest of the world.

And then a spark of hope was realized in the form of luck and timing. In 2019, the drug called, “Trikafta”, a genetic modulator would dare to rewrite so many stories and make the improbable burn bright with possibility. For a mere moment I let go of 37. I let go of a narrative that suffocated the embers of envisioning a future beyond this decade. For a while it seemed as if CF was a stable, but silent role in my life. One that let me live parts of a life I had only imagined. A life that wasn’t written in breathlessness but forged by abundant will. A life every person deserves.

Thirty-Seven

Post Embolization

So, it seems a bit surreal that I should wake up in a hospital bed on my 37th birthday - port accessed, IVs administered, and awaiting an embolization (a procedure used to stop and prevent the lungs from hemoptysis, or bleeding of the lungs). This year’s “Happy Birthday” was set amongst the various irregular beeps and pitches of IV pumps, vital signs, and ID scanners and its time kept in rhythm to the repetitive shuffle of shoes and the proverbial song of blood draws and port placements sung to  “1, 2, 3 poke”. It’s amazing how the familiarity of this life comes back, even if it’s one you’ve tried to extinguish from your memory. To be honest, I’ve silently felt this stability slipping away from me for some time now. It’s been hard for me to want to believe it. This body feels so unfamiliar, so foreign, and I’ve wanted to live in the familiar place of denial I knew for so many years. The place that I thought let me “live”.

As a 37-year-old I write this post from a hospital room on the 7th floor overlooking the Mississippi River at the University of MN. I  feel a deeper gratitude and love than I thought I’d ever know. As I look out my window at the world, I am reminded that we all seek the same light. We hold our breath as the days grow shorter, colder, and more unforgiving. We hold onto hope - waiting for the days to grow in illuminating grace when we can say “we have made it.” 

On this 37th birthday did I awake to the same two thoughts? Without fail.

We cannot know the power of a single flame without knowing darkness. We cannot feel the joy and warmth it brings without feeling the encompassing desolation of life's proverbial winter. We cannot truly know the realization of hope without daring to embrace the truth within ourselves. That truth illuminated by the light that lives within. That very light lets each of us bravely live within each breath no matter the number of candles that light the way. I only have one request - please make sure to place the candles on top of my head in a crown of evergreen so that my arms may be free to embrace the greatest gift my life has ever known - each of you. Love to you all.

PS - Thank you everyone for the meaningful birthday wishes. They mean so very much. Also, good news! I just got the "ok" and am headed home today to Mark and the hounds.