San Diego Union-Tribune (Sunday)
I STILL HAVE MY VOICE
With the recent news that Bruce Willis has been diagnosed with aphasia, many people are learning about this condition for the first time.
As you probably know, I’m not one of them. I’ve been living with aphasia for 11 years, since being shot while meeting with constituents in Tucson. The bullet tore through the left hemisphere of my brain, where the language function sits, leaving profound and lasting damage in my ability to speak. It’s one of many examples of the devastation of gun violence that statistics don’t fully capture — and that we don’t talk about enough.
We also don’t talk enough about aphasia, which affects more than 2 million Americans.
But we should — especially since the coronavirus pandemic has underscored how dependent we are on our friendships; we have learned how hard it is to lose daily, routine connections to one another. For people living with aphasia, this loneliness is often magnified and won’t simply end when the pandemic does.
Imagine struggling to talk to your loved ones on the phone, the words you want to say on the tip of your tongue, but not being able to get them out. Or imagine struggling to talk to strangers: Though my cognition — my understanding and intelligence — is unaffected by my aphasia, sometimes that is not clear to new acquaintances because of my speech. That misunderstanding can itself be painful and frustrating.
But an aphasia diagnosis doesn’t mean an end to communication or connection — rather, it requires a shift in how communication and connection occurs.
I thought about this while watching “CODA,” which won a well-deserved best picture Oscar. It was beautiful to see different forms of communication so joyfully celebrated. People who communicate differently don’t want to be made to feel like burdens or outcasts. We’re seeking — and we deserve — the same level of human connection as everyone else.
But we have to work for it. When I was first recovering in the hospital, I could only say two words: “what” and “chicken.” Why? I don’t know, but I said them both over and over, and even after I regained my ability to say other words, “chicken” would pop out.
There’s a scene in the documentary about my recovery that recently premiered at South by Southwest, “Gabby Giffords Won’t Back Down,” that is both painful for me to watch and hard not to smile at. It’s from the early days of my recovery. I’m practicing saying “happy birthday” to my husband, but can’t help adding “chicken” at the end. Happy birthday — chicken! Fortunately, I can now say “happy birthday” without “chicken,” but that memory remains, and is now memorialized on the big screen.
Most people practice before speaking in front of an audience. But the level of practice it requires for me is on an entirely different level. It can take months for me to master a new speech.
Before I was shot, I didn’t know what a “functor” was. Now, they’re the bane of my existence. These are the small, common words such as prepositions, pronouns and conjunctions that have little content in themselves but hold a sentence together. I often drop them when speaking, as do others with aphasia, so my speeches and my communication need to be direct and to the point — saying as much as possible with as few words as possible.
An aphasia diagnosis doesn’t mean an end to communication or connection.
This means that words are precious to me. Every one of them has significance, and I don’t take them for granted. I tend not to take much for granted anymore.
I try not to dwell on what I can’t do. Instead, I focus on what I can. I love to sing, which is easier for me than speaking, as is often true for people with aphasia. I take Spanish lessons. I’ve gone skydiving. I ride my bike and I play French horn. If I say one word wrong, I try saying a different one. With the help of others — including my longtime speech therapist and cheerleader, Fabi Hirsch — I co-founded the Tucson-based Friends of Aphasia so that others living with this condition can better access the support they need and deserve.
My recovery from being shot is a lifelong journey, and aphasia will accompany me on that road. There are always going to be new challenges to overcome. The only thing I can do — the only thing anyone can do — is take it day by day and celebrate the milestones, no matter how big or small.
My message for Bruce Willis and for everyone out there struggling with aphasia — or any other communication disorder — is that you are not alone. I’m here for you. We are here for each other. And together, we’re going to get through this — and be stronger for it.
Giffords represented Arizona’s 8th District in the U.S. House of Representatives from 2007 to 2012. This initially ran in The Washington Post.