The end of summer 2012 was a reminder that the world was still turning for everyone else, even though my life had screeched to a halt as a result of my stroke. Students were going back to school. Office workers were going back to the office with renewed vigor to finish up the year. Football season was starting in the bars.
I had only been out of the hospital for five months. Before I had stroked out in January 2012, I had recently graduated and been busy avoiding getting a "real job" like my peers. So, I worked in a bar. Now, less than 6 months after my "accident", I could only teeter around the house, and could barely be understood by my closest friends and family. I sounded like a really odd combination of drunk and Deaf. I was not going to be a part of ANY of the fall hustle and bustle.
Below: Audio Recording June 10th 2012 // Aimeeleigh and Chris (then boyfriend)
Many of the lasting effects of brain injuries and stroke are silent, and not easily visible: depression, loss of confidence, sexual dysfunction, emotional lability, insomnia, inability to talk, jumbled thoughts, boredom.....and fear of it all happening again. I had them all. My bilateral brain-stem infarct had also left me with more obvious problems of ataxia and speech. According to The American Stroke Association, ataxia or "Ataxic Hemiparesis Syndrome" is a "weakness or clumsiness of body". "Ataxia causes individuals to over-or under-reach for things, as well as delayed initiation, difficulty with maintaining force and rhythm, tremors and difficulty coordinating muscles."
If I moved or spoke it was very clear that "something" was not right with me. I spilled everything that I didn't drop first. As soon as I opened my mouth, my lungs, tongue, and mouth did not work well enough with my brain or each other for me to be understandable. My friends would often guess what I was mumbling by shouting out their translations like they were on a game show. It was hilarious. I laughed hysterically, until, also because of the stroke, I cried hysterically. Often, I would pee my pants because someone guessed what I had said but he or she was so ridiculously wrong, that I couldn't stand it. FYI, An adult woman peeing her pants is a surefire way to kill the mood of any gathering. My mom said I sounded like a "drunk ET". That was generous. In fact, only my boyfriend and mother had an "ear" for my weird manner of speech. They could "translate" my mumbling to others. I really didn't know if I would ever re-gain the ability to communicate verbally on my own. How would I ever work? Further my education? Remain interesting and funny to my mate? To myself? Your voice is so much apart of yourself and who you are. Every time I opened my mouth, my self esteem took a major hit.
Below: Audio Recording June 21st 2012 // Aimeeleigh and Linda (mother)
I digress. At this point of my recovery, boredom, severe ataxia, my impaired speech and general lack of confidence were some of my my biggest challenges. Moreover, I was unemployed, not sleeping, and could not keep my thoughts from racing. I could also feel my relationship changing. I was unable to "talk it out" emotionally and literally with my boyfriend.
So, I focused on what I could do. I could hobble to the bus stop, the pharmacy, the donut shop and the nail salon. I was like a 5'5" toddler wandering around Oceanside, California. The authorities, bus drivers and shop owners thought that I was "drunk in public" or mentally challenged. Clerks ten years younger than I patronizingly called me "honey" and would speak really s l o w l y. Everyone was extra nice. Yet Nobody EVER asked me what happened. I just became used to being stared at. I felt like my scar could explain me, though. My neck scar made the donut-man, nail lady and pharmacist occasionally have patience with me when I mumbled requests to them. I felt that my scar was a quick explanation to others of what had happened to me, and that it was important to my future for it to stay visible. In a way, I felt protected by my neck scar while I hobbled around the neighborhood. My trache scar gave me legitimacy. It was a badge. It was proof to others that I had survived some fairly heinous shit and I wasn't just a "weirdo".
I googled "How to darken a scar," Advertisements on laser skin resurfacing and Strivectin were the only links that populated. I had spent the last three month baking my neck in the San Diego sun, trying to fry my trache scar so it would never fade. I wanted to be sure that others would to be able to see my neck from a distance and not expect a "normal" voice to come out. The veiled shock and embarrassment people expressed when they heard my hopelessly garbled voice was always awkward. It could sometimes be broken when I pointed to my angry neck scar; it was a quick visual explanation for strangers who heard me. My tracheostomy scar reminds me, then and now, that life is both precious and precarious. My scar reminds me that miracles do happen, and that modern medicine is a very cool thing.
Today, about two years after my stroke, my trache scar has greatly faded as have many of my neurologic issues. I regularly acknowledge other peoples' trache scars and we casually compare them. People often ask me what happened. It's a "no big deal" topic of conversation. I actually see pre-stroke pics of my neck and it seems like something is missing. Like the way people talk about their tattoos, its a part of me now. I embrace my my scar, and I like to encourage others to embrace their issues and scars, no matter what they are from.
Scars mean that you won :)
P.S. I have discovered that after certain amount of time, UV rays won't continue to discolor a scar, it just effs up the skin surrounding the scar! Nowadays, I use body glitter in my trache scar if I really want to emphasize it!