“Imagine for a moment that one day you woke up and realized you couldn’t think of the words for comm
Imagine having trouble remembering the names of people with whom you have daily contact. Envision being in the middle of a sentence and completely forgetting what it was you were saying…not just once, but over and over again. Now think about the terror of being able to decode the words you see in a book but not being able to make sense of the meaning.”
Those words are not from a stroke survivor. They are from Tracey Grumback, a young woman living with Lyme disease. And the medical term for what she describes is aphasia.
Aphasia: (uh-fay-zhuh) A loss or reduction of language (i.e., speaking, understanding, reading, and/or writing) following brain damage, typically as a result of a stroke.
Those of you who know my story know that aphasia, in the form of word salad, was a challenging part of my post stroke experience. Aphasia is it’s own special kind of hell. Communication is so basic to who we are. Language alone separates us from the animal kingdom. So loss of communication skills can be especially devastating. Beyond the frustration of not being able to express one’s self, not being understood or not comprehending, is the separation, isolation and often depression that follows.
Look at it from the other side. How patient are you with someone who struggles painfully for words? Or who sounds unintelligible or nonsensical? Who seems not to comprehend what you say, despite breaking it down, speaking slowly or rephrasing?
With aphasia, your intelligence may be in no way diminished. But because your ability to interact is, you may no longer be perceived as intelligent, able to contribute or worth interacting with. That negative feedback internalized certainly slows any efforts at rehabilitation.
Roberta Elman, Phd, Speech and Language pathologist founder of the Aphasia Center of California, the first non-profit aphasia center in the US, joined me for a recent talk back. The Aphasia Center's mission: “provides high quality, cutting-edge services that enhance communication skills, quality of life, and overall well-being for those affected by aphasia."
(With Roberta Elman, below.)
She spoke of the social and personal cost of aphasia, and available rehab support. Many questions arose, some questions to me: “If you wrote, did you make sense?” I don’t know. No one asked me to write! I could read words, but I often did not recognize the word or know it’s meaning. Perhaps a bit like dyslexics.
“How could you not know you weren’t making sense?” I don’t know. My brain heard what I intended to say, not the actual sounds I made. Some neural pathways were clearly scrambled. But sadly, there is just so much we do not yet know about the brain.
“And one day, it just disappeared?” Yup. Before I began speech therapy. But I needed the therapy to relearn words, sequencing stories, connect cause and effect, and practice directed speaking.
But as Roberta mentioned, for some, aphasia never resolves. Some have persistent word salad or word finding difficulty, but are aware of it. Others remain unaware. Some hear nonsense coming from other people, without realizing the scramble is in their own brain. One bi or trilingual person may lose one language but not another. In my case, even now, though I can read fluently, my reading comprehension lags, but not my auditory comprehension, so this previously voracious reader now depends on audiobooks.
Googling an image to illustrate the experience of aphasia, I found mostly medical illustrations, or images for lay people like these.
Then, I stumbled on this compelling group of paintings, each of which capture aspects of my emotional experience of aphasia.
Following the link from those images, led me to Grumback’s personal essay, which I quoted in part at the top.
Her essay reminds me that many, many people are touched by aphasia, because there are many conditions that cause brain injury which disrupts the complex networks of language and comprehension. Trauma, chemotherapy, radiation, inflammatory and infectious diseases, including Lyme’s, degenerative brain diseases are only some of the many in addition to stroke.
And for some, aphasia becomes a permanent part of their lives. Which makes finding another means of self expression crucial.
Most brain recovery centers have creative programs: healing through music or art. Creating art or music, even for those who have never been involved in the arts, can be a huge source of comfort and of inspiration. Many after brain injury find a new ability to express themselves through art. Sometimes, it may be related to left brain injuries allowing right brain compensation or expression. But the magic that comes with being in the flow, from expressing oneself, from creating something from nothing is not only a joy in itself, but may motivate help motivate recovery.
One art therapy tool, Take What You Need, from the Schurig Center pictured below, highlights additional benefits of art therapy, in this case, in coloring a mandala.
For those who do not regain language fluency, or who have a loved one with aphasia, a few pointers from The National Aphasia Association.
A reminder of the important work non-profits do to fill in the gaps in long term recovery support for brain injury.
And a reminder that every time a door closes, another opens.
With gratitude for this journey.
And if you'd like to support Aphasia Therapy, consider joining the Aphasia Center's Annual Walk.