November 2017 Tony Sutton
November 1, 2017
Tony Sutton November 2017
I am lucky. I wanted to start by saying that, as others have had far more difficult situations than myself. I was asked to share my survivor story because it helps break the mold of what brain injuries look like and how they vary in individuals. I also found in my own recovery that medicine only went so far and that I had to look to other people’s stories in order to find my own path. I offer my story to survivors and readers alike that they may too learn and support those going through life-changing circumstances.
My story could be defined as the person who was doing everything right. At the age of 27, I had been exercising for over 10 years of my life and following a strict diet regimen for a majority of my twenties up to that point. I was (am) healthy, active, and led a happy life. I was working as an adjunct instructor and part-time trainer, which led me to have a plethora of time to devote to my health and fitness. I had always learned, the healthier you maintain yourself, the less sick you become. Little did I know, I would test that the Monday before Thanksgiving in 2013.
With my flexible work hours, I spent a majority of my free time with my friends at the gym. This was like any other day, except we were exceptionally goofy and happy, until things took a turn for the worst. I felt very dizzy at first, like I had stood up too quickly, and already my conscious thought was trying to figure out my condition. The dizziness didn’t subside and symptoms progressed. My speech patterns began to slow. In an instant, I went from being able to run countless miles and lift heavy objects to not being able to walk or control my arms. My legs began to tremble and buckle, unable to support my body weight, and I had to lie down. My arms would rise and fall as if they were controlled by another mind. This was the first thing that I learned, young and healthy aside, this is something I couldn’t control. Yet if it wasn’t for my lifestyle, my outcome may have been different.
I am lucky because of the people I choose to be around. My group of like-minded health nuts also extended to a group of first responders and emergency medicine staff, who quickly changed roles from gym buddies to triage. I remember everything vividly; the only thing I had control over was my mind. They did a few standard tests on me, each of which I hoped would have fixed me. I am forever thankful that their friendship with me did not cloud their judgement as they sent me in an ambulance to the ER, which promptly called the stroke code upon my arrival. Even then, despite my clear conscious thought, my mind had been in denial that I may be forever changed or worse, not even wake up the next day. After the multiple images, spinal tap, and brain scans, I finally felt relief when I was given a bed, which I would remain in for an additional two days for follow up tests. Upon reflection, I learned a few things about those moments in the hospital and the time after.
When you have a stroke, there are certain assumptions of what that looks like and who has them: a healthy 27-year-old doesn't typically come to mind. For me, initial diagnoses were low blood sugar or massive migraine. It wasn’t until I arrived at the hospital that they called the stroke code, and I found out the first theory for my situation was that my stroke was caused by either drugs and/or steroid use. For me, it was neither. In fact, that’s the question I get the most. What caused it? We don’t know. And I confidently take comfort in that.
They could have discharged me sooner but the doctors and staff wanted to consider every possible option. They found that I was in great health. The only theory to the cause was a clot exploiting a patent foramen ovale or PFO (a small hole between the chambers of your heart; one in four people have them). Normally, the clot would have ended up in the lungs, but if it had gone through the PFO, it could have gone to my brain instead causing the blockage that occurred within my cerebellum. With this theory, any time I lifted weights or bore down in pressure (using the bathroom even), could potentially cause it to reoccur. Besides blood thinners, there was another option for treatment.
Again, I was lucky. I had strongly considered invasive surgery until my neurologist, of all people, discovered something overlooked with the examination of my heart. She questioned why any previous doctors hadn’t done additional imaging of the heart. She ordered the test, and the physician reading the test confirmed the suspicions of the neurologist that my PFO was so insignificant that it was unlikely to have caused my stroke. But wait, now you don’t know the cause?! Well, I avoided intrusive heart surgery and the test said I should have no fear to go and live my life without physical restrictions. Yet I would come to find my restrictions wouldn’t be physical but mental.
My battle was in the mind. When people see a physical limitation, they recognize an injury. What about if you cannot see the injury? Mine came from the headaches commonly associated with head injuries. Ironically, both of the joys of my life, academics and exercise, caused them daily. One headache is okay but when they last years, they begin to creep into your life. I became intolerant of people and this impacted my behavior, personality, relationships, and work. I began to live in my mind because I feared what I might say to people. Were their actions rude or was I overreacting? Regardless, they would snowball in my mind, fueling both headaches and my short-fuse for intrapersonal communication.
Standard western knowledge for treating these did not help either, and the side effects often became worse than the symptoms, such as depression. Here is where I would encourage people to become their own advocate as I did, seeking alternative forms of treatment, such as reiki, massage, and cranial sacral therapy. My physical recovery took days but my mental recovery would take years. It’s a battle that’s hard to share with people because it’s one where you just become tired. You become tired because brain injuries make you tired and it becomes a strain to act like yourself. When your behaviors impact the world around you, you constantly walk on egg shells, not wanting to hurt the same people who have helped you.
Struggles of the mind can be a dark place. I will always remember the day when I finally found the treatment plan that allowed me to feel normal again. It felt like a light bulb turning on. I could finally be myself without trying. For one day, I felt what it was like to not be able to talk or move under my own power. A surreal experience. I am grateful to have not had these limitations. Perhaps it was because I had been healthy or because I received fast and high-quality treatment. Like the cause, I will never know why I have been so lucky, all I can do is thank my higher-power for putting the right people in my life to get me treatment so quickly. To be thankful that I didn’t have to have rehabilitative surgery or rehabilitation at all. And to be thankful that I can go forward without fear and most importantly, that I am thankful to finally be myself again.