There was a hint of autumn in the air. The musty scent of the leaves hung heavy in the air as they crunched beneath our feet. The October days became shorter. And the holidays loomed like shadows in the late afternoon sun. I looked toward the upcoming holidays with an unsettling sense of impending doom.
This was an autumn like no other. My husband Joe and I were on the way to my outpatient physical therapy appointment. My legs were spindly and I walked like a newborn deer on shaky, unsteady limbs. My weight had dropped to 115 kg and my hair was falling out. I lived a life filled with fear. Crying every day and waking up in panic after a restless sleep full of terrible nightmares.
Five months earlier, on May 22, 2021, my colon was perforated due to undiagnosed diverticulitis, a serious infection. I went into septic shock, an impaired way of my immune system fighting the infection, and my organs began to fail. Our world was instantly rocked when I was flown by helicopter to Baltimore for emergency shock surgery. The doctors doubted I would make it.
Surprisingly, I did. A large portion of my colon was removed and a temporary colostomy was created by pulling a small piece of intestine through my abdominal wall to create a stoma to get rid of waste while my intestine healed. My colorectal surgeon, a brilliant doctor with skilled hands, said she would get everything back together by reversing the colostomy in December. The nurses marveled at my neatly attached 10-inch incision that ran directly across my stomach and through my belly button. They said the stoma was “beautiful.” My surgeon had done a great job, but I wasn’t sure if I should call the stoma “gorgeous.”
Jackie is in intensive care with shock trauma after septic shock, 2021.
I spent over a month in the hospital and inpatient rehab. Shortly after I got home, I was readmitted to clear a post-operative infection. I had to learn to walk again and brush my teeth. I had to get used to the stoma. The sepsis left me exhausted and my muscles weakened. I couldn’t pour myself a bowl of cereal and could barely sit for more than 10 minutes at a time.
My nerves were exhausted. My family did everything they could to calm me down, but they didn’t understand what was going on. I didn’t even know that I had post-traumatic stress disorder (PTSD) and post-sepsis syndrome, a condition that affects about 50% of survivors but that no one knows much about. We suffer in silence. My mind had been overwhelmed by irrational fears of almost everything. I was terrified of having blood tests or taking my vitals. I began to emotionally detach from life itself. I tuned out, just like the blank screen on the TV I’d been staring at for hours.
The holidays and my next operation were getting closer and closer. I was so sure I wouldn’t survive the setback that I booked the operation for December 8th to ensure I didn’t miss my youngest daughter Alexis’s 21st birthday on the 5th. I wanted Alexis to enjoy this milestone just in case I didn’t make it.
Alexis, my other daughter Elise, and my son Joey and his fiancée Colleen assured me they would take care of the holidays. In the meantime, I had a calendar full of “must-dos.” A colonoscopy to check if everything inside is OK for surgery. Iron infusions, lots of blood tests, cardiology exams, pulmonology exams and a physical exam. This operation was no walk in the park. It took several hours and was very complex. I also have several chronic, disabling medical conditions, including Ehlers-Danlos Hypermobile, POTS, Crohn’s Disease, and severe osteoporosis. I had a lot of boxes to check before surgery.
In November, my husband suggested that we go to a nearby lake and take a walk since the afternoon sun was even lower in the sky. The leaves were really rustling now. The walks helped calm my mind a bit and strengthened my muscles for the surgery. I continued with outpatient physical therapy. I was still very weak – and plagued by my mental doom demons.
Thanksgiving arrived on a bright, sunny November morning. Elise and Alexis helped their father prepare everything. They made everything from scratch – turkey, stuffing, potatoes and cake. Joey and Colleen brought more food and cookies. New memories were forming around me, just as tasty as the food. As we sat at the table and the children joked and laughed, I looked around intently, trying to take a mental snapshot and anchor the image in my heart. Just in case my fears come true.
Before Alexis left to go back to college this weekend, I gave her an early birthday present. A Pandora bracelet and a 21 charm with her birthstone. Tears welled up in my eyes. I was convinced I would never live to see her graduate, let alone see her return home for Christmas break in a few weeks. I tried not to reveal my fears, but I failed miserably.
Jackie and Alexis with Alexis’ 21st birthday charm bracelet, 2021
December began with a fresh cold. I avoided listening to Christmas music. It was too wistful and sentimental, it hurt my heart and a big lump formed in my throat. Bing Crosby’s “You’re Everything I Want for Christmas” has always been a sore point. My dad played it on the family stereo when I was little and it makes me think of the family that is no longer here. And now I was worried that it would be the last time I’d be here to hear Christmas carols. Instead, smooth jazz stayed on the radio. Nice, neutral area.
The morning of my 5 a.m. surgical check-in in Baltimore at the same hospital, my nerves were filled with tension and terror. I almost escaped and ran out the front door. My husband persuaded me to go back inside, and a registration department employee named Tatia came over, sat with me and held my hands. She poked gently and asked what was wrong. I told her that I was sure I would die in the operation. Tatia asked me about my children, their careers, and what brought me there that morning. I gushed about my children and then told her about the sepsis and my previous flirtation with death. She assured me that I was very strong, that I had survived this and that I would survive this too. She accompanied us upstairs to the operating room and stayed there until my surgeon arrived. It was like an angel was watching over me that morning.
When I woke up in the recovery room, the nurses happily announced that I had made it. I was on the other side! Just not “this” page. Much to my surprise, I was still on this planet. I peeked under the covers at the small white bandage on the left side of my stomach where my stoma used to be. My surgeon said the disassembly was successful, although it took a few days for everything to work again. I spent eight days in the hospital, walking the halls with my IV pole. Joe filmed my progress for Instagram. One of my nurses made a Christmas ornament out of a makeshift sparkly pipe cleaner and attached it to my IV pole. It was the most beautiful decoration I had ever seen.
Jackie and her children, Christmas 2021
The day after I got home, our son drove to Pittsburgh to bring Alexis home for break. The girls had insisted on waiting until I got home to decorate the tree. I was still frail and weak. But I was able to lie on the couch and watch them hang Christmas decorations while they played the Christmas carol guessing game with their dad. Alexis was playing classic Christmas songs (the really old ones) and when the first few seconds of the song started, she asked her father if he would say the name of the artist. They had played this game for years.
My husband helped do some shopping online so we had something for the kids on Christmas morning. Elise had purchased a Fitbit back in September so I could track my steps as I continued to recover. She was always more sure of my survival than I was. Joey and Colleen bought me a Wii Fit so I could work out at home on my non-physical therapy days. Alexis prepared the best food and it felt like we had started a new chapter. As I opened the presents, emotions erupted. I really didn’t need the gifts; My family was everything I needed. It felt surreal. Still be alive. Like a dream. Our Christmas dream. And it was everything I ever wanted for Christmas.
resources
The Sepsis Alliance
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