Meet Kristen. A mutual friend invited Kristen to run with us in the Spring of 2000. A short sunny three miler later and we were on the path to being friends for life. Within the first few months of knowing each other, we learned that we shared a simple but intense eagerness to live life to the fullest and to pack as many experiences in as short a time as possible. As time and circumstance would play out, we decided to be roommates during our senior year of college, moving in together later that fall. Little did I know at the time that I had won the friend lottery.
I learned several things about her those first few months as roommates: Kristen is the MacGyver of paper crafts, she is never shy about asking 1,000 questions to understand how something works and she's an amazingly loyal friend and thoughtful listener. I had no idea that at the time of her birth twenty-something years earlier, she was born with Cystic Fibrosis ("winning the genetic lottery" in her words) a grim diagnosis that meant she should expect to live to age 10, age 14 tops. Her health experiences were watershed moments during her childhood cultivating her into a humble, authentic and giving soul, appreciative of simply being alive.
Kristen kept her cards close when it came to topics of her health, not wanting her condition to define her college experience and friendships and certainly not wanting to drain the life out of an otherwise vibrant time of young adulthood.
My first introduction to her health issues occurred on moving day into our little Conifer Place apartment. I was unloading groceries and Kristen nonchalantly pointed out the bright red glucogen rescue kit sitting in the butter tray of the fridge. She gave me a quick 101 on insulin shock, ending with "so if you find me and I'm unconscious, you just need to just give me this shot, okay?" She didn't wait for an answer, instead making a quick joke about a batch of chili she was making for a cook off with friends, inviting me to join them. That's the thing about Kristen, she always puts others first. Always.
She met Eric in the Summer of 2002. I knew something was up almost immediately when I was visiting her one weekend in Bend. She had orchestrated a very sophisticated encounter to "accidentally" run into "this guy" she wanted me to meet while I was in town. She pulled it off seamlessly and we all hung out that night. Love was in the air. Kristen was smitten. I could tell Eric was eager to make her laugh. Together they were goofy, joyful and completely supportive of helping one another to become the very best version of themselves. They laughed together, a lot.
They married three years later, just the two of them and a minister on a secluded beach in Mexico. Friends and family gathered to celebrate their commitment, each having submitted a handmade square for a quilt. The end result reflected the expanse and depth of love by the community that still surrounds them. The squares were beautiful and filled with marital advice and well wishes and was presented to them at their reception with heartfelt emotion; never has a wedding reception been so humbled by the commitment it takes to walk eyes wide open into the "in sickness and an in health" vow when sickness is such a certainty of the future. Much like they do today, Kristen and Eric graciously and humbly accepted the well wishes from their tribe, with not a dry eye in the room.
Over time, I became increasingly aware of how CF was impacting Kristen's day to day life - the Delta F508 gene mutation she inherited, began to work it's magic throughout her body resulting in digestive challenges and significant bouts with abdominal pain stretching weeks or months at a time. CF was never the focus of our friendship though, Kristen always started our conversations asking about me and in an instant we could connect with real depth and authenticity about our hopes and fears, our "Eric's" (our husbands), the latest happenings with our families, how work was going. As the CF creeped into our conversations more and more, Kristen would always apologize for us spending time talking about it or for not being a better friend or out of fear that she sounded like she was complaining (she never was).
It was then that I truly realized the warrior that Kristen had become. While I was whining to her about some insignificant annoyance in my life, she was beginning the fight for hers. Here she was, quietly fighting a seemingly uphill battle that filled her days and nights with uncertainty and pain. I'm sure I only heard 10% of the stories and hardships: She presented at the ER was assumed to be a "pill seeker" and humiliated as they treated her like an addict. She and Eric saved up for a trip to Hawaii, which culminated in arriving and checking into the hospital for a week in paradise. She took up a battle against her insurance company to get an insulin pump (and won). She stayed as an adult at a Children's hospital, as there was no adult clinic for CF patients yet in our state. She moved 200 miles away from home and her husband, going back to school for two years to become a Registered Nurse. This empowered her with knowledge and the medical language of her care teams and she sought a career in geriatric end of life bedside care so she could support others. She worked hard to get her body strong enough to become a mom, carrying beautiful baby Hattie Ann Marie for 31 weeks.
When I first met Hattie, she was less than a week old and only a few pounds. Her little pink-hatted head barely filled my palm. Kristen had decorated her incubator with crayon colored pictures of Piglet and Pooh and quickly built her expertise in the medical needs of a preemie. How she did that on zero sleep still astounds me. Like her Mom, Hattie is a warrior. And like her Mom, she is surrounded by deep love. Kristen and Eric in solidarity, cared for Hattie day and night while she was in the NICU, rarely leaving each others side or the hospital.
Hattie's a strong and curious 18-month-old now. She's got a smile and a giggle that reminds me of her parents. Not unlike most 18 month-olds, she loves a good snuggle with her mama. And not unlike most Mama Bear's I know, more time and more snuggles with Hattie is now the center; the reason for everything. Hattie is the reason that Kristen fights harder now than ever before.
CF sucks. It's complex and unforgiving. Every patient is unique and even the best of intentioned medical providers don't get it. Advocating for her own care and navigating a complex and siloed medical system not yet prepared to care for the distinct challenges faced by adults living with CF, Kristen has spent her life forging a path ahead of the research and the science available for her disease. She's done it with humor and class and grace. Sadly, today she finds herself ahead of the curve and in declining condition.
Kristen's pancreas has failed and her remaining treatment option is securing a gastric pacemaker which will cost tens of thousands of dollars. She bravely stands now at a crossroads where she's exhausted all remaining medical options in Oregon and is seeking out of state options for her care.
Success for Kristen means embarking on the next phase of treatment with her husband and daughter by her side. Together with their care team, they are evaluating out of state care facilities and researching the many aspects involved in moving (new job for Eric, care for Hattie, moving & travel expenses, medical expenses, quality of adult CF care). While the news is unexpected and sudden and the magnitude of change they face is mind boggling - Kristen remains committed to persevere. Soon after being placed in contact with a Palliative Care team, she sent Eric this text from the hospital, "Don't cry sweetie. I love life too much to choose anything else but FIGHT."
Friends like Kristen touch us at our core because they remind us that every breath is worth fighting for. They remind us what Atticus Finch taught us about true courage; "it's knowing you're licked before you begin but you begin anyway and you see it through no matter what." She bravely begins each day facing extreme physical challenges and pain and ends each day with her zest for life undiminished. She inspires us with her valiant and ever-present focus on laughter and love. Warrior defines her. She's not done fighting. Please help my friend with the battle.
My objective is clear and it's a personal one - my friend Kristen wants to fight and I want to help her. Raising $50,000 will enable Kristen to seek necessary treatment out-of-state, bringing Eric and Hattie with her. She and I are alike and probably like many of you - our deepest feelings and meaning in life come from spending time with those we love the most. I invite you to join me in extending the time Kristen, Eric and Hattie spend with each other. Together with your help, your donation may add years or decades to her life.
I learned several things about her those first few months as roommates: Kristen is the MacGyver of paper crafts, she is never shy about asking 1,000 questions to understand how something works and she's an amazingly loyal friend and thoughtful listener. I had no idea that at the time of her birth twenty-something years earlier, she was born with Cystic Fibrosis ("winning the genetic lottery" in her words) a grim diagnosis that meant she should expect to live to age 10, age 14 tops. Her health experiences were watershed moments during her childhood cultivating her into a humble, authentic and giving soul, appreciative of simply being alive.
Kristen kept her cards close when it came to topics of her health, not wanting her condition to define her college experience and friendships and certainly not wanting to drain the life out of an otherwise vibrant time of young adulthood.
My first introduction to her health issues occurred on moving day into our little Conifer Place apartment. I was unloading groceries and Kristen nonchalantly pointed out the bright red glucogen rescue kit sitting in the butter tray of the fridge. She gave me a quick 101 on insulin shock, ending with "so if you find me and I'm unconscious, you just need to just give me this shot, okay?" She didn't wait for an answer, instead making a quick joke about a batch of chili she was making for a cook off with friends, inviting me to join them. That's the thing about Kristen, she always puts others first. Always.
She met Eric in the Summer of 2002. I knew something was up almost immediately when I was visiting her one weekend in Bend. She had orchestrated a very sophisticated encounter to "accidentally" run into "this guy" she wanted me to meet while I was in town. She pulled it off seamlessly and we all hung out that night. Love was in the air. Kristen was smitten. I could tell Eric was eager to make her laugh. Together they were goofy, joyful and completely supportive of helping one another to become the very best version of themselves. They laughed together, a lot.
They married three years later, just the two of them and a minister on a secluded beach in Mexico. Friends and family gathered to celebrate their commitment, each having submitted a handmade square for a quilt. The end result reflected the expanse and depth of love by the community that still surrounds them. The squares were beautiful and filled with marital advice and well wishes and was presented to them at their reception with heartfelt emotion; never has a wedding reception been so humbled by the commitment it takes to walk eyes wide open into the "in sickness and an in health" vow when sickness is such a certainty of the future. Much like they do today, Kristen and Eric graciously and humbly accepted the well wishes from their tribe, with not a dry eye in the room.
Over time, I became increasingly aware of how CF was impacting Kristen's day to day life - the Delta F508 gene mutation she inherited, began to work it's magic throughout her body resulting in digestive challenges and significant bouts with abdominal pain stretching weeks or months at a time. CF was never the focus of our friendship though, Kristen always started our conversations asking about me and in an instant we could connect with real depth and authenticity about our hopes and fears, our "Eric's" (our husbands), the latest happenings with our families, how work was going. As the CF creeped into our conversations more and more, Kristen would always apologize for us spending time talking about it or for not being a better friend or out of fear that she sounded like she was complaining (she never was).
It was then that I truly realized the warrior that Kristen had become. While I was whining to her about some insignificant annoyance in my life, she was beginning the fight for hers. Here she was, quietly fighting a seemingly uphill battle that filled her days and nights with uncertainty and pain. I'm sure I only heard 10% of the stories and hardships: She presented at the ER was assumed to be a "pill seeker" and humiliated as they treated her like an addict. She and Eric saved up for a trip to Hawaii, which culminated in arriving and checking into the hospital for a week in paradise. She took up a battle against her insurance company to get an insulin pump (and won). She stayed as an adult at a Children's hospital, as there was no adult clinic for CF patients yet in our state. She moved 200 miles away from home and her husband, going back to school for two years to become a Registered Nurse. This empowered her with knowledge and the medical language of her care teams and she sought a career in geriatric end of life bedside care so she could support others. She worked hard to get her body strong enough to become a mom, carrying beautiful baby Hattie Ann Marie for 31 weeks.
When I first met Hattie, she was less than a week old and only a few pounds. Her little pink-hatted head barely filled my palm. Kristen had decorated her incubator with crayon colored pictures of Piglet and Pooh and quickly built her expertise in the medical needs of a preemie. How she did that on zero sleep still astounds me. Like her Mom, Hattie is a warrior. And like her Mom, she is surrounded by deep love. Kristen and Eric in solidarity, cared for Hattie day and night while she was in the NICU, rarely leaving each others side or the hospital.
Hattie's a strong and curious 18-month-old now. She's got a smile and a giggle that reminds me of her parents. Not unlike most 18 month-olds, she loves a good snuggle with her mama. And not unlike most Mama Bear's I know, more time and more snuggles with Hattie is now the center; the reason for everything. Hattie is the reason that Kristen fights harder now than ever before.
CF sucks. It's complex and unforgiving. Every patient is unique and even the best of intentioned medical providers don't get it. Advocating for her own care and navigating a complex and siloed medical system not yet prepared to care for the distinct challenges faced by adults living with CF, Kristen has spent her life forging a path ahead of the research and the science available for her disease. She's done it with humor and class and grace. Sadly, today she finds herself ahead of the curve and in declining condition.
Kristen's pancreas has failed and her remaining treatment option is securing a gastric pacemaker which will cost tens of thousands of dollars. She bravely stands now at a crossroads where she's exhausted all remaining medical options in Oregon and is seeking out of state options for her care.
Success for Kristen means embarking on the next phase of treatment with her husband and daughter by her side. Together with their care team, they are evaluating out of state care facilities and researching the many aspects involved in moving (new job for Eric, care for Hattie, moving & travel expenses, medical expenses, quality of adult CF care). While the news is unexpected and sudden and the magnitude of change they face is mind boggling - Kristen remains committed to persevere. Soon after being placed in contact with a Palliative Care team, she sent Eric this text from the hospital, "Don't cry sweetie. I love life too much to choose anything else but FIGHT."
Friends like Kristen touch us at our core because they remind us that every breath is worth fighting for. They remind us what Atticus Finch taught us about true courage; "it's knowing you're licked before you begin but you begin anyway and you see it through no matter what." She bravely begins each day facing extreme physical challenges and pain and ends each day with her zest for life undiminished. She inspires us with her valiant and ever-present focus on laughter and love. Warrior defines her. She's not done fighting. Please help my friend with the battle.
My objective is clear and it's a personal one - my friend Kristen wants to fight and I want to help her. Raising $50,000 will enable Kristen to seek necessary treatment out-of-state, bringing Eric and Hattie with her. She and I are alike and probably like many of you - our deepest feelings and meaning in life come from spending time with those we love the most. I invite you to join me in extending the time Kristen, Eric and Hattie spend with each other. Together with your help, your donation may add years or decades to her life.