Lessons on Living, Taught by Almost Dying

*** TRIGGER WARNING ***

* This post contains real medical information and photographs taken from my hospitalizations, which may be sensitive to some individuals. *

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This blog was written in January 2020.

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June 2012 – Lehigh Valley Hospital Bethlehem- Status epilepticus. Initial seizure lasting 45 minutes. Tons of back to back seizures after. Contracted ventilator-associated pneumonia. 16 days in ICU with 10 of them unconscious and on a ventilator. 23 days total in the hospital.

September 2012 – Pottstown Hospital- Status epilepticus after a colonoscopy. Initial seizure lasting 25 minutes with multiple break through seizures. 1 day in ICU in a medically induced coma. Life-flighted by Medevac to Thomas Jefferson University Hospital for advanced care. 3 days in the Neuro-Intensive Care Unit, where I remained in a medically induced coma. 8 days total in the hospital.

March 2019 – Hospital of the University of Pennsylvania- Acute respiratory distress caused by pneumonia. Undiagnosed MRSA infection in my sinuses that destroyed the sphenoid bone, leaving my skull base exposed. 3 days in ICU. 6 days total in the hospital.

April 29, 2019 – Physicians Care Surgical Hospital- Bone graft surgery to repair sphenoid sinus/skull base. The surgery had extensive risks, which included puncturing the dura space of the brain and leaking cerebrospinal fluid, going blind, and death. 2 days in the hospital. Left with blurry vision for 2 weeks. Heavy bleeding on and off after surgery, combined with another medical condition, contributed to passing out one week later. Had a concussion and subdural hematoma on the frontal lobe.

May 22, 2019 – Phoenixville Hospital- Outpatient hysteroscopy/D&C. Hemorrhaged during fibroid/polyp removal. Led to decreased blood pressure and oxygen levels, and ultimately, pulseless ventricular tachycardia, which required CPR/defibrillation. Synchronized cardioversion procedure the next day. 5 days in ICU, with 3 of them in a medically induced coma. 9 days total in the hospital.

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I built a pretty impressive medical history by the time I was 29. And this list doesn’t include my 8 surgeries, and other diagnoses. What it does include though, is 5 dates that have meaning to me. 5 times I faced life threatening situations. 5 times my life could have been cut short, some of them being closer to that occurring than others. If you ask my doctors, some of these were nothing short of a miracle. A friend of mine recently told me, “You’ve had the unique opportunity to come closer than most of us to having luck run out…You’ve really learned a lot about being alive by almost dying.” I didn’t realize at the time just how right she was. The last date listed happened just about a month before my 30th birthday – a date I almost didn’t live to see. But June 26th came, and I became a 30 year old…just viewed it a bit differently than some of my friends. For me it wasn’t just another sign of getting older. It was a beautiful thing to celebrate, knowing I came close to not being able to do so. Another year that I was granted. These 5 near death experiences have taught me so many life lessons. I’d like to share them with you.

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NOW is the time to realize you matter.

Self confidence, self esteem, self worth…all departments I’m definitely lacking in. And then you throw in my social anxiety and depression, and you have a huge mess. Well let me tell you…before, during, and after difficult times, people will tell you how much you mean to them, the difference you made in their lives, and offer words of encouragement. Of course, you also come to find who isn’t there, and it hurts. But during each one of my ordeals, I had texts and Facebook messages from family, friends, and co-workers, showing their concern, love, and support. My family, but especially my sister Rachael, acted as my connection with the outside world. She made sure to keep friends and family updated and asked them for some extra positivity when needed. A majority of my times in ICU were spent unconscious. But when I was awake, my sister would share with me all the good people had to say. Even once I came home from the hospital, there was always a table full of cards and flowers. I then would take the time to read my texts and messages on social media. I was always surprised by how many people reached out. I know we can’t expect to have that outpouring of love and support on a daily basis, but we can live with the knowledge that it’s there for us. We are all valuable human beings. There is always someone who will see that in us, even when we can’t see it ourselves. The trick is allowing ourselves to believe that. Allow yourself to feel that you matter now, instead of figuring it out when something bad happens. And even in the darkest of times, you’re never really alone, despite how alone you may feel.

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Death is scarier for others, than it is for the person who may experience it.

While in ICU, fear was never what I felt the most. I was afraid of dying prior to surgeries I’ve had. But that wasn’t my fear while in the hospital, even when it could have happened. Yes, it is frightening to wake up with a breathing tube. Unable to speak. Unable to move because you’ve been placed in wrist restraints – an effort to prevent you from pulling at your tangled mess of tubes, wires, and IV lines. Frightening to realize that you have defibrillator pads attached to you. Or the mad rush when your condition deteriorates and they page “Rapid Response.” Most of my time in ICU was spent either unconscious or in a drug induced haze, trying to make sense of what had happened and what was currently going on. Trying to understand what day it is when they tell you how much time has gone by and start filling the gaps in between. Some of those days I can only remember snapshots. Even though you’re “awake”, you’re so out of it that half the time you don’t really know what’s going on. Constantly trying to do your best to get well enough to move to a regular room, because that was one step closer to going home. All of that is pretty scary…but what I felt the most was sadness for my loved ones. My battles were an absolute nightmare for my friends and family. They were terrified of losing me. On multiple occasions they had to be pulled into a family room to listen to doctors tell them things like “she may not wake up”, “She’s at risk for her heart to stop”, and even “If she survives this, she may have brain damage.” For days they had to walk into my hospital room where I lied completely unresponsive and on a ventilator. They spent days wondering if I could hear them tell me to keep fighting, or if I could hear their whispers of “I love you”. With my most recent hospitalization, a crash cart was placed right outside my room “just as a precaution”, due to events that had already transpired. My family had to stare at its face every day, wondering if it would be needed. In November 2013, my son Aiden passed away due to complications of being a micro-preemie. He was just shy of 1 month old. I know how I felt during that time, and how I still feel today. That is an unimaginable heartache that no one should have to go through. My parents were faced with the possibility of losing me, their oldest child, not just once, but 5 different times. Parents are not supposed to outlive their children. I can remember brief moments where I could see the fear in my family’s faces, or sense it in their voices, even though they were trying to put on a brave smile for me. My fight to make it out of ICU wasn’t for my own life, but for my dad’s, my mom’s, and my sister’s lives. I wanted my niece to grow up with an aunt. The thought of their pain was my motivation for survival.

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Life is meant for the living.

I’m going to generalize something – we take life for granted. Before my latest health journey, really all I was doing was working and trying to make ends meet. I never really did anything for myself. I felt “fun” wasn’t really an option. My life was a bit like the movie Groundhog Day… work, sleep, chores, repeat. “Sure I can pick up another shift” even though I was burnt out, but knowing I could use the extra money. But after my time in ICU I couldn’t shake the feeling that I let the past 2-3 years of my life slip away. If you want to do something with your life, do it now and don’t wait. Don’t wait until everything’s perfect. Don’t wait until you have more time, more money, more energy. There will always be obstacles, challenges, and moments that are less than perfect. Life’s too short. “Time is free, but it’s priceless. You can’t own it, but you can use it. You can’t keep it, but you can spend it. Once you’ve lost it, you can never get it back”.

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Reliving the past will never create a healthy present.

The same friend I quoted earlier also told me, “It’s ok to feel stressed and anxious. You’ve earned that. But don’t let it consume you. That’s when you stop living and let things out of your control consume you.” BINGO. Each time after coming home from the hospital my mental health really took a hit, especially after my last hospitalization, where I was defibrillated, and had a cardioversion procedure. I continued to replay everything that had happened to me. I couldn’t get the images out of my mind. I had flashbacks. Hearing the microwave beep would send me into an internal panic because it was an all too familiar sound of the monitors beeping in the hospital. I could no longer watch Greys Anatomy or The Good Doctor. I was constantly sucked out of reality, and thrown back into my hospital room. My anxiety and depression had gone to new levels. I was the epitome of an emotional rollercoaster. I continued to ask myself “Why me?”, wishing at times that I would have just died, because I was exhausted in every aspect.. After 10 years of dealing with medical issues, I was tired of fighting. But I made the mistake of not telling anyone right away how I felt. I began to feel like a burden to my friends and family. This was the hundredth time that I’ve needed them to help care for me. The hundredth time that all of their time and energy were being spent on me. I knew they were tired. I felt I couldn’t add anymore to their plates, so I kept my feelings to myself. Fortunately, with the help of my family, we recognized that I was in a downward spiral. Fact: It’s perfectly OKAY to seek professional help to get your emotions in check. I did. I began seeing a neuropsychologist, and then had weekly appointments with a therapist. It helped my relationship with my friends and family. They helped me to understand that it was ok to express my feelings to my family, but to try not to weigh them down. They were my biggest cheerleaders, and sometimes even my caregivers…and while they love and care about me deeply, they need a break too. I now had an outside person I could go to with my problems. They helped me to understand that what was happening to me was the result of the physical/mental/emotional trauma of almost dying…more than once. I was diagnosed with a form of PTSD called Post Intensive Care Syndrome. With the help of my neuropsychologist and therapist, I realized I was still living in the past. I had to start living in the moment again to be happy and to move forward. I had to learn to change my negative thinking. My sister throughout my ordeals took photographs to remind me of everything I have overcome. Some have taken me a long time to be able to look at. Some I still haven’t gotten the courage to see. Trust me, tears are still shed. I’m still struggling with some of the emotional effects of everything, and learning how to deal with some of the physical changes that have happened to my body. I’m still triggered by walking into a hospital, and seeing images of different types of medical equipment. But I’m allowing myself to move forward (even though it’s slow going at times), and trying to constantly remind myself of the warrior that I am. Multiple times I’ve been told “you’re stronger than you give yourself credit for”. I’ve been told “you’re resilient and continue to always bounce back.” It’s a matter of me truly believing all of that and allowing myself to see what everyone else does. “I am not what happened to me. I am what I choose to become.” And this goes for every single one of us.

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What is meant to be, will be.

The day before my bone graft surgery, this same, beautiful soul that I keep mentioning gave me some very wise words: “No matter how much fear and worry you put into this, it’s not in your control. I know you’ve had many difficult experiences, but you’re still here. And I don’t believe this surgery is going to bring you down…We can’t answer for ourselves or for each other WHEN our luck will run out. But we know it WILL for both of us one day. I would be more afraid of not living my life fully up to my last moment than dying.” Over the past 7 years, I have faced 5 life threatening situations. 3 in just one year alone. With some of them, I should have died, or at least ended up with even more severe physical problems than I did. Yes, I do have some health issues now that have resulted from these situations. Repeated seizures in the past, as well as oxygen loss during my last hospitalization, have left me with memory loss and issues with concentration. I now require a cardiologist. But I’m alive. If I was supposed to die, I would have. I survived each time because quite simply, it wasn’t my time to go. Everyone says I’m still here for a reason. I’m still trying to figure out what that reason is sometimes. But my mental health is a work in progress. Here’s my tip: Don’t stress over trying to control everything in your life. That’s how we create anxiety and unnecessary worry. If it’s supposed to happen, it will. Instead, work on being grateful for each day you have, for each day you survive, even when things are tough. Work on finding that courage, positivity, and strength to keep enduring whatever life throws at you. Say I love you. Say I’m sorry. Take chances. Live without regrets. None of us know when our last day will be. Don’t wait until it’s too late. Continue to move forward, and always remember, what is meant to be, will be.

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The following photos are not in any particular order. Many were taken during the hospitalization where I had been defibrillated.