Worth of Words: You Don’t Know What You’ve Lost Until It Is Gone
About the Series: Worth of Words
It’s been often said that words have power; they are the vessels of how we perceive and construct reality and our everyday lives. Yet, this power becomes nuanced when looking at just how those words come across—how they’re spoken, why they’re written, when and where they’re read. Moreover, they vary across different cultures, geographies, and times, meaning there’s a lot more to unpack than what our own lived experiences can say. Worth of Words was created to do just that—to tell the stories of our words, our accents, our voices, and our various languages, ranging from the variations of Blackness in speech and code-switching to how language impacts queer identities. Our camp counselors shared their stories, both visually and audibly, so you can read and listen to their experiences on the power, and possible harm, of words.
Growing up, my rare disease took almost everything from me: my ability to walk, to attend school, to regulate temperature, the list goes on. Through all of that, the thing that kept me hopeful was my voice; my ability to laugh with friends, to express myself through writing, to advocate for myself and others, etc. But when I was sixteen years old, my rare disease managed to steal that from me, too.
Because of my experiences I thought I knew the importance of appreciating all of the seemingly small things, but when I lost my voice, I realized how much I took simple communication for granted. It is the basis of human connection, something psychologically proven necessary to lead a full life, something you likely do not even think about until you’re forced to.
I like to explain my body as an oxymoron—emphasis on the moron. I have a rare platelet disorder that means I should not be able to clot, but because of another rare neurovascular disease, my body will not stop clotting. Those clots caused multiple, serious neurovascular events such as seizures and transient ischemic attacks (TIA’s), which are what led to all of my language impairments.
It started off slowly, something I could easily put off as “normal person spacey-ness” combined with the stress and exhaustion caused by my health. It was not until I got a full battery of post neuro-trauma (i.e., stroke, car crash, post concussive syndrome, etc.) neuropsych testing that we (my parents, physicians, and I) could really see just how bad things were.
In a way, receiving those results was incredibly validating. I had been struggling so immensely, but because I have a high IQ, I was able to hide and compensate for some of the deficits, so people did not seem to believe me. It had reached the point where I, who was once an avid reader, writer with published work, and traveling speaker, had to read a simple sentence five times just to gain some basic understanding of it. I could not write, even simple text messages to friends were impossible, and I also could not speak—I would substitute words for others thinking I had said the right word initially (for example: I would mean to say map but would instead say cat). Whenever I spoke, it sounded like mouth salad; it was much too difficult to get the words from my brain out of my mouth.
I started going to speech therapy three times a week for months. It was endlessly frustrating not being able to communicate how I knew I once could, having to go back to the basics. I did make progress there though, but then I plateaued and those speech therapists accepted that as better. I, however, did not.
I found another speech therapist, Loryn, who had worked with cases like mine—high achieving, high functioning women post neuro-trauma, who would not accept “just fine.” She explained that my brain is like a filing cabinet, and neuro-trauma was like a tornado ripping everything apart, sending it flying in different directions. The information was all still there, just not where it was supposed to be. She said that her job was not to necessarily reorganize the filing system, but to teach me how to make sense of the current mess.
Loryn was honest with me, told me that things would never be easy again. Reading, writing, and speaking, which had all been effortless before, would now take consistent hard work.
She taught me new ways to read, how to find the key information without getting lost in the jumble of other flowery words. She taught me how to write again, not just from a standpoint of being able to string words together to make a sentence, but in a way of helping me relearn the physical act of writing, which had also been lost. Through all of the struggle, at least my handwriting is now far prettier than ever before. We worked on my memory and word-finding skills so that I would not get lost. And finally, we worked on my speech pattern, and now, unless I’m particularly exhausted, you would never know how choppy my language had previously been.
It is absolutely wild to look back four years ago and see how far I’ve come. Not to diminish all of the hard work I have (and continue to) put in, but without my speech therapist believing in and pushing me, I would not be where I am today. Loryn is the reason I’m at college and am able to be successful in my coursework. She is the reason I’m writing this piece now. She is the reason I delivered two keynote speeches last year in addition to many other speaking engagements over the years. There is no way I will ever be able to repay her, but I hope that using my voice as a way to hopefully influence positive change is a start.
I firmly believe that if you have been given the gift of voice, you have an obligation to use it to change the world. Whether that means lobbying congress or writing about injustice on campus or even something as seemingly small as complimenting a stranger, it all makes a difference.
About the Author
Shira Strongin is a third year student at the George Washington University majoring in Political Communications. Originally from Southern California, Strongin is an award winning advocate and writer who took her personal experience with rare disease and founded Sick Chicks, a 501(c)3 non-profit dedicated to uniting and empowering women with varying illnesses and abilities.
