Finding My 'New Normal' in Life With Expressive Aphasia
I could not pronounce the word “toothbrush.”
I was sitting in the hospital bed, not even able to speak simple words, let alone form sentences. At this point, I could not see the trajectory of where my life was going to go. All I could see was blackness.
I had been dealing with a Spetzler-Martin grade 3-4 brain AVM in the left parietal lobe. An AVM is abnormal tangles of blood vessels of the brain. It is a congenital condition that many people do not even know about until symptoms occur. In my case, grand mal seizures clued the physicians in. My course of treatment was an Onyx embolization, followed by a craniotomy 48 hours later. In layman’s terms, my team of neurosurgeons would “glue’” the AVM together with a substance called Onyx, then re-sect the AVM. An AVM resection involves separating the AVM from the surrounding tissue. The other options, gamma knife (radiation) or simply living with it, were not applicable. I did not have a lot of time, as prior testing had revealed that the AVM had bled. Testing revealed a small aneurysm, too, but the aneurysm was little of concern to the team — the AVM had to go, and go quickly, in the neurosurgeon’s opinion.
Obviously, I was given the possible outcomes after the surgeries, but somehow, between giving power of attorney to my father (long story) and carefully deciding my wishes in case of a situation where I was placed on life support, I missed the memo regarding planning for a permanent disability following the surgeries. In my mind, I truly believed that I was going to sail through both the embolization and craniotomy to wake up as a new person. Maybe I needed to cling to this notion of being a new person for me to survive? Like a “new brain, new life” philosophy? I don’t know. Either way, to say that I was not prepared is an understatement.
I did sail through the embolization without complications. I remember very little of the next 48 hours going into the craniotomy, except a notion of immense physical pain. The craniotomy itself was a five-hour ordeal. My neurosurgeon met with my husband directly after the surgery. He explained that he could not control the bleeding, and that I needed a blood transfusion due to the loss of blood. I found out later that my neurosurgeon thought that I was going to wake up paralyzed on my right side. Instead, I woke up to Broca’s aphasia (expressive aphasia). I could not properly speak or write. There are other forms of aphasia and most come from a stroke or brain injury. PPA (primary progressive aphasia) stems from a neurodegenerative disease. But all forms can be devastating to the individual facing this new way of life.
I will never forget the shock as I tried to speak my first words after I woke up. I couldn’t pronounce words and the feeling of sheer panic I felt is something that I carry to this very day. The next 10 days in the hospital were a hellscape of emotions, mainly anger. I swore at nurses, occupational therapists, and physicians. I remember an entire morning spent dissolved in tears, simply because I thought I was “failing” the evaluation tests, including a test that included pronouncing words. When I could not pronounce the word “toothpaste,” I broke down. Never I have felt so helpless, desperately needing connection to other humans in one of my darkest hours, but not able to express what I felt and needed. I could form and execute partial sentences, but not complete ones. Also, I could not write full sentences or grasp the words I needed. Often, and it is still true to this day, the wrong word would pop out — like saying “pounds” instead of “dollars.”
The prognosis was unclear, because it was too early to tell how much my brain was going the heal. The AVM and aneurysm were completely gone, and, due to the beautiful neuroplasticity of the brain, there was a possibility that my brain could “re-wire.” The most important and vital thing that the medical professionals did was to foster a sense of hope. Absolutely no one told me that the extent of my aphasia was going to be permanent. Because they believed, I believed. I continued to believe. Even after it was apparent that I could not go to a rehabilitation facility for the recommended four to six weeks for intensive therapy, due to the fact that I was one of the only caregivers for my profoundly autistic son, I took the seed of hope with me.
The next couple years, sans formal therapy, were not butterflies and rainbows. My informal therapy for my speech and writing was to copy words and sentences over and over again. Also, I practiced my speech by watching “The Family Feud” multiple times a day, so that I could use my words quickly. I now know that I was grieving, too. Grieving what I lost, that person that I once was, and I remain still somewhat grieving. The action of talking to anyone, especially strangers at the grocery store or a doctor’s appointment, held a sense of fear. As the fear grew, the more the isolation settled in. I feared that I wouldn’t be able to work again, or even go back to school. My intellect and my memory were intact, but my communication skills were almost destroyed. I sunk into a deep depression.
I don’t know the exact day, or moment, but I turned the corner. As someone once said, the fire inside of me, burned brighter than the darkness surrounding me. Maybe it was that seed of hope, wanting to bloom? But I wanted to live. I didn’t know what that was going to look like, but I held fast and tight to the idea that I could rise. Once I made the decision to change my life, the Universe provided the people, places, and things that would facilitate this metamorphosis. I stopped drinking and was able to go off three medications (with a physician’s help). Also, I worked with two different therapists, attended self-help groups and a recovery organization, worked spiritually, and built a circle of very supportive women. I took advantage of every single opportunity that came my way.
Today, my life looks very different. I am certified by the state of Michigan as a Peer Recovery Coach and am working within the same hospital where my devastating craniotomy took place, helping people struggling with substance use disorder. I am on the board of directors of a peer-run non-profit and am involved in advocacy work in SUD recovery spaces. I also speak publicly with a group that fights stigma around substance use disorder and mental health.
I still struggle with aphasia every day of my life. Days when I am tired, or stressed, it becomes worse. I practice gratitude and self-compassion, and slowly, I am working on acceptance. The biggest takeaway from this is to not give up hope. Brains heal in different ways, and a “new normal” takes time to grasp. Love yourself and honor your limitations while striving for a good quality of life.
And I did learn to say “toothbrush.”