6 minute read
From Firefighting to Fighting for My Life: Navigating Grief and Chronic Illness
Jessika Buehne | Oley Member
I was a healthy, active kid, rarely sick and passionate about sports. After high school, I found my dream career in fire and emergency medical services. I loved the challenge of problem-solving as part of a team while helping my community. At my peak, I felt unstoppable—until the bowel obstructions began.
It started in 2019 at my brother’s high school graduation. I woke up with severe abdominal pain but dismissed it as ovarian cyst pain, something I was used to dealing with due to PCOS. I pushed through the day but struggled to eat and keep food down. By evening, I was in so much pain my mom took me to the ER. A CT scan revealed a bowel obstruction, surprising everyone since I had no history of abdominal surgeries. With an NG tube, the blockage resolved without surgery, and I was discharged. I didn’t realize this was only the beginning of a long, painful journey.
Over the next year, the obstructions became frequent, leading to multiple hospitalizations. Despite countless tests, no GI specialist could identify the cause. I was losing weight rapidly, my hair was falling out, and my energy plummeted. The removal of my gallbladder brought no relief. By August 2020, I experienced my worst obstruction yet, losing 55 pounds in three weeks. I had to leave the fire department for a job at an urgent care clinic, but my condition worsened. One of the doctors noticed my decline and referred me to an out-of-state center for specialized care.
At the new center, I was diagnosed with intestinal failure caused by chronic intestinal pseudoobstruction (CIPO), likely a genetic condition. By late 2020, I was on 24/7 parenteral nutrition (PN), as my body could no longer absorb nutrients properly. Weighing just over 90 pounds and struggling with severe symptoms, I was told I needed a multi-organ transplant, a devastating blow at just 21 years old.
In March 2021, I relocated to be closer to the specialized center. Terrified by the risks of a transplant, I opted for gut rehabilitation surgery first. While it improved my condition temporarily, I remained dependent on PN and knew a transplant was inevitable. The realization of my new reality hit hard. My dreams of helping others in emergency services were gone, replaced by the fight for my life.
Grieving the loss of my former life was overwhelming. I had been so full of hope and ambition, only to have my health steal everything I worked for. Despite the challenges, I’ve come to terms with my new path, finding strength in small victories and the support of loved ones.
Little did I know that I had already begun my grieving process months prior when I had to leave my job at the fire department, but most importantly being now on PN had taken a major blow to me mentally. Taking time throughout the past few years to outline and acknowledge the grief I have been enduring not only helped me begin healing mentally but also helped me learn how to live and prosper with my new way of life and opened many new doors of opportunity for me.
Grief is usually defined as something that is a loss/ change that alters your life and is personal. The five stages of grief, introduced by Elisabeth Kübler Ross, describe common emotional responses to loss: Denial, where individuals struggle to accept the reality of the loss; Anger, marked by frustration and blame; Bargaining, involving "what if" scenarios and attempts to regain control; Depression, characterized by deep sadness and withdrawal as the loss is processed; and Acceptance, where one comes to terms with the loss and begins to move forward. These stages are not linear or universal but provide a framework to understand and navigate the complex emotions of grief.
A few years back I sat down with my therapist and worked through each of these processes and outlined some points in where my journey lined up with these feelings. Here’s some points from my experience:
Denial
Eating around people, ignoring my GI problems even though it causes me immense pain and discomfort. Engaging in activities that physically push my body beyond its current limit thinking I can still do “XYZ” with no consequences.
Anger
My illnesses taking away the career I worked so hard for, being the patient and not the caregiver anymore. Having to put my life on hold I worked so hard to build up just to move 13 hours away for a higher level of care.
Bargaining
If only I had advocated better for myself back in my home state, I wouldn’t have gotten so sick. Saying I’ll do anything to not be in pain no matter the cost.
Dealing with Depression
Feeling powerless to change the inevitable. Having to rely on medical devices and infusions for my survival.
Acceptance
Realizing that my TPN is essential and that it does help me feel better and give me the energy I need, and coming to terms with my new body and way of life by not letting it define me as a person.
My experience is just ONE experience out of many. Finding the time to sit down and really begin working through all that is happening to me really allowed me to better understand and appreciate the life I have now. Once I started doing that so many doors began to open that I didn’t even know were possible for someone like me. I also began to open myself up and allowed new connections to blossom within this community. Having myself surrounded by others who also have experienced similar grief brought me a new sense of belonging and purpose. Plus, it allowed me to add new additions to my toolbox for navigating this crazy life on nutrition support.
Grief can be an overwhelming and frightening experience, often accompanied by a whirlwind of emotions like sadness, anger, and confusion. Acknowledging grief can feel daunting, as it requires facing the pain of loss head-on, which many instinctively avoid. However, confronting grief is a crucial step toward healing and growth. By allowing yourself to feel and process these emotions, you can begin to understand your loss and its impact on your life. Embracing grief opens the door to self-awareness, emotional resilience, and personal growth, enabling you to find meaning and rebuild your life in a way that honors your experience.
