Wow! How does one start to put into words an experience for which there are no words? Disbelief. Terror. Panic. Surrender. Faith. Hope. Acceptance. Gratitude. Appreciation. Inspiration. These are the words that come spiraling into my mind that best describe my 7-month recovery journey. This is my story...
On December 19, 2017, before climbing into bed for the night, I sent a last message confiding in a friend that the level of work stress in my life was killing me and something had to give. That same night, I had an extremely vivid "event" occur, in which I was dying, drowning in a sea of dark waves and unable to catch my breath. With each wave, I was being held under the water longer and longer with diminishing strength to fight the insurmountable waves. In one last effort, I used every ounce of strength and power of my being to declare out loud, "I am not going to die!” In that same moment, I felt my chest cavity rip and crack apart followed by the sensation of being despined from the tailbone all the way up to the base of my neck. The pain was inexpressible and paralyzing. Thankfully, I woke up some time after, but with a knowing that my life was about to change and something big had just happened or was about to happen. That entire day my mind was occupied with wonder as to what happened in that dream. How could something in my sleep be so excruciatingly painful? From where did this sense of inner strength that I commanded down to my last breath come? These thoughts eventually became buried under the complexities of the work day and wouldn't be remembered until 2 weeks after I was released from 3 different hospital stays. Later that afternoon, I became inexplicably weak with a raging headache and an overwhelming feeling of nausea. I had become accustomed to high levels of stress and, by default, demanded my body power through it as if it was any other day. Little did I know that my gift of a body was telling me that something was very wrong. By that evening I did not feel well; but, with the help and support of a girlfriend I was able to keep my evening commitment to attend a holiday party. After finishing all my daily obligations, I went to bed around 3am without a worry nor thought other than sheer exhaustion. The next morning, December 21st, I awoke to the most slicing headache and deep kink to the neck ever imaginable; however, sleeping with 4 dogs can do that to you. (Those of you with spoiled dogs know what I mean.) I felt like a dull, thick ice pick had been inserted into my neck an inch or so below my right ear. When I went to stand, I knew something was drastically wrong as I could barely stand nor walk. I had never felt that horrible in all my life. This wasn't the flu nor exhaustion. However, I wrote it off to exhaustion as my body had been operating in fight or flight for years plus I never would get colds nor the flu. I did know, that I needed to lay back down to regroup myself. I fell asleep for another hour, but this time when I woke, I told myself, "Peirce, no one is going to do this for you. You must get up." So, I used all my will and might to get up, the whole time thinking, "I am in control of my body." That was the plan until I looked in the mirror. My right lid had completely dropped. I could only lift it by using my index finger to hold it open. With my lid held open, I noticed my right pupil was extremely constricted and nowhere near the size of the left pupil. With only four days before Christmas, I just knew I didn't have time to get sick. Reluctantly, I made time later that day to see a doctor and was given the diagnosis of pink eye, or conjunctivitis.
My entire professional career has been in the medical field either as a pharmaceutical representative or as a medical liaison. Such positions have afforded me the opportunity to know hundreds and hundreds of doctors and medical support staff in every disease state known to mankind. Several medical professionals and friends along the day commented on my “drooping” eyelid and questioned the diagnosis of pink eye; however, with the crunch of the holidays and last minute deadlines, I didn't think much about it. Looking back, I couldn't think much about anything - my thoughts couldn't process, almost like there was a break in the receiving and processing chain. I had extreme pressure in my chest, which made it quite impossible to breath, which I attributed to pre-holiday "anxiety" even though I had never suffered from anxiety. The next 2 days, my pink eye and I would hit the treadmill for our daily stress-relief jogs only to be surprised with how little energy and stamina we (I) had. When I needed the stress-relief the most, I couldn't even run properly. Both days, I had to cut it short. I couldn't think nor run, I didn't know what was happening. So, again, I defaulted to exhaustion. It wasn't until the night of the 23rd, a girlfriend, who happened to be an optometrist, texted to check on me, expressing her concerns that there was a much larger, underlying problem and how pink eye didn't even make sense nor did the prescribing of antibiotics. About 15 minutes later, another medical friend (also, an optometrist) called to wish me happy holidays. I shared that the holidays were not starting well as I had been diagnosed a couple days prior with pink eye, but how some colleagues didn't think it really was pink eye, yada yada. I sent a photo of my eyes, and that is when life got real very quickly. I remember it like it was right now. With some minor censoring of language, I was told, "That's not pink eye. Where is the closest ER to you?" Within seconds the photo of my drooping, right eyelid was sent to a brilliant Neuro-Ophthalmologist. Within 3 minutes, this specialist was on the phone with me demanding that I immediately go to the closest emergency room. I thought it was all a bit silly and complete overkill as all I truly needed was to sleep for days without any interruptions nor demands. How does one go from pink eye to you must go to the ER, stat? It is to these medical friends that I owe my life. Upon my arrival to the ER, the tone quickly changed when I was told I had Horner's Syndrome of the right eye, which was most likely indicating a much more serious problem. I still didn't grasp the severity of the situation until I was told that I could die any second and that going into shock from a life-long allergy to IVP Dye was the least of my worries. The CT scan with contrast confirmed the exact suspicion the Neuro-Ophthalmologist articulated to the ER doctor: an internal carotid dissection. It wasn't until I was told that I was being transferred for emergency vascular surgery did I realize I was no longer in control of anything, and that I was now at the mercy of my body, medical staff and the universe. Christmas morning 2017, at the uncivilized hour of 5am, I was awoken by a hospitalist who delivered the second best news of my life. "The good news is that your MRI does not show any signs of stroke." As I processed his words and what they actually meant to me and my body, I was humored by the irony in the timing of the delivery of the news. All my adult life, my friends and family know not to wake nor call me before noon on Christmas. Yet, here I was receiving some of the best news of my life and waaaay before noon! Since then, I have a new outlook on Christmas mornings.
Over the course of the next days, I would learn that 1) I never had pink eye, 2) my drooping lid and constricted pupil were due to Horner's Syndrome, 3) I had dissected my right internal carotid artery and 4) I had a large clot in my head. Nothing is more humbling than the surrender that is delivered like a sledgehammer in a time like this. I was terrified to fall asleep, to move my head and to breathe in fear of dying. The first thought in my mind every morning upon opening my eyes for the first 4 months of my recovery was, "Am I alive, or am I dead?" As I laid in bed recovering and looking for answers, I created Horner’s Syndrome: Awareness, Action & Advocacy Foundation. It was during this time, the unmet need for information, support and education on Horner’s Syndrome became strikingly apparent. On my road to recovery, there have been great challenges and obstacles that have required a lot of time, patience and strength. I've had neighbors, clients and everyday acquaintances become my closest allies and support team; I've also lost friends and jobs. My experience has been a journey - a journey that many others have and will go through. At the start of my journey, I was misdiagnosed with pink eye. If it wasn’t for several close doctor friends and a brilliant Neuro-Ophthalmologist demanding that I seek emergency intervention at the closest emergency room, I would not be alive today. Because of the extent to which my condition progressed, over the course of the days that I was misdiagnosed, and the severity of the situation, every second counted. There are not words to express the terror and fear that I experienced knowing I could die any second. Several weeks later when I somewhat stabilized, my heart and mind became flooded with gratefulness for my second chance at life, yet a sense of responsibility to others became apparent. I knew that I had to help save the lives of others as mine had been saved. Not only did I want to help educate medical professionals to avoid simple pitfalls that could result in the misdiagnosis and death of their patient, but I also wanted to provide education to those survivors, like myself, that needed resources and support during the long, arduous journey ahead. One is never truly “healed” from Horner’s Syndrome; this is a condition that becomes a lifestyle and that demands constant monitoring of one’s health. Horner’s Syndrome: Awareness, Action & Advocacy Foundation allows me to help others by drawing on my first-hand experience of all the shortcomings and unmet needs along the journey. In addition to the educational and awareness needs, there are both the acute and chronic physical, mental and emotional challenges that present to the patient, their family and friends and the medical professionals involved in their care. My direction is very clear: to save lives and to make the most impact to the most amount of people around the globe by building a bridge to bring the most relevant and up-to-date education, tools and support to those in the position to help others while enabling those survivors to better help themselves.
With the most love and gratitude,
"Tell the story of the mountain you climbed, your words could become a page in someone else's survival guide." Morgan H. Nichols
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