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.”

“Hello, this is the nurse at the orthopedic hospital. Early this morning your husband had a neurological problem develop …” “Has he had a stroke?” “Yes, ma’am.” “I’m leaving now.” And our life turned upside-down. We don’t get to choose all of the cards we are dealt in life. We do choose how we play them. Both divorced and in our 50s, we found ourselves rebuilding our lives. My long-held plans ended five years earlier when my ex abandoned our marriage and our children. He was sorting out his life in wake of a dead marriage. We started a new life together. He loved me and my two teens as he did his own daughters. Long-term back pain worsened and his surgeon recommended fusion surgery. This strong, active man persevered through all they threw at him—physical therapies, pain, medications, and injections—with fervor and without complaint. The back pain returned. The orthopedic recommended another fusion procedure. We should be in and out of the hospital in 48 hours. I would stay nearby with my girlfriend, Gloria. Twelve hours after the surgery, he had a “small to medium, middle cerebral artery (MCA), ischemic stroke on the left side with expressive aphasia and apraxia.” Gloria grabbed my hands and said a quick prayer for his recovery before I hurried out the door. He spent a month in the hospital. And thus began our learning how to play this latest hand we’d been dealt. Those weeks in the hospital were an eye-opening experience for both of us. Many of our preconceived thoughts and expectations of the medical community were tossed on end. I thought, “Strokes aren’t new. They’ll know what to do, what we’re to expect.” But … no. The brain is a massive pile of little gray cells. Every stroke touches on different cells even if they’re very near each other. Suppose they were all numbered. My stroke may happen on cells 1000-2000. Your stroke, same size as mine, same area as mine, but cells 1500-2500 are damaged. So we will each have similar and different deficits from the stroke. That was the first thing we learned. They cannot tell you with certainty when or if you’ll recover. He was an aggressive participant in his recovery. He never gave up. Attitude and perseverance play a huge role in recovery. He’d had serious back surgery the day before the stroke. It was listed on his charts. I’d written it on the whiteboard in each hospital room. I told anyone who entered his room. I was continually amazed that no one seemed to know. Many times I would arrive during PT to find the therapist did not know of the surgery. “Did you read his chart? Or here, written on the board?” It happened many, many times. That was the second thing I learned, never assume they know more than you. One medical professional told me he’d be fit as a fiddle in three months. Another said, “He’ll never be the same man again.” Both were wrong. I knew my husband. We needed their help, but I knew him best. He came home four weeks after his surgery. Home Health scheduled physical therapy, occupational therapy, and speech therapy. We were both on my employer’s health insurance. He, and many stroke survivors (SS), will need therapy for years. Most insurance pays for a limited number of visits. It won’t be enough. The third thing I learned was to keep records. Take notes on everything. Dates, times, names, locations, events. Record the visits to his room by the medical professionals, what was said or done. Make notes of your SS’s blood pressure, weight, any falls, nausea, dizziness, diet, alcohol/tobacco consumed, and on and on. And your questions. We must learn as much as possible. We cannot wait for the medical community to initiate his therapy. I Googled. I watched YouTube videos. I read books. I joined FB pages. You must become your own advocate. He took ownership of his therapy. But healing is slow. We live in a high-tech world. If something breaks, we toss it and buy another. Our bodies are complex low-tech beings. We must be patient, yet not complacent. We must gauge our recovery not in days, but in seasons, “Do I feel better at Easter than last Christmas?” Make videos. Take pictures. Anything to show your stroke survivor that they are improving. Everything for encouragement. The memory is fuzzy. Life is overwhelming and in three or four months you may forget just how far your SS has come. It is now about 18 months since his stroke. He’s still improving. Life is different, but he’s still the man I married.

With one-in-five people having a disability in the U.S. today, the lack of representation – just 2.3 percent of characters in the 100 top-grossing films of 2019 and 8 percent in family films – means that millions of people are unable to see themselves reflected in media. The 2022 Sundance Film Festival (January 20 – 30) will provide an opportunity for audiences with various disabilities to see themselves represented – all from the comfort of their homes through the virtual festival site. This year, several films feature disability in the plot, including “892,” “75,000,” “Cha Cha Real Smooth,” “Chilly and Milly,” “I Didn’t See You There,” and “Sharp Stick,” among others. Ensuring an Accessible Festival The 2022 Sundance Film Festival being virtual this year also brings a desire to be accessible to all. According to Sundance, all films will be available with closed captioning on every English language feature film and short or subtitles on non-English films, which allows viewers who are Deaf or Hard of Hearing to view films. In addition, the New Frontier Spaceship includes closed captioning and text chat features. All premiere screening Q&A’s, along with most of the Beyond Film program of panels and events, will include ASL interpretation. In addition, 11 feature-length films and two shorts include audio description (AD) for blind and low-vision viewers. Most importantly, the programmers have said they will conduct ongoing accessibility audits of all Sundance-hosted online venues and events throughout the festival. In addition, the festival has provided a way for anyone to request an accommodation or offer feedback. To offer feedback, please contact the accessibility team at accessibility@sundance.org or the accessibility hotline, 435-776-7790. Below please find a guide to several of the films featuring disability in the plot or talent with disabilities. Feature (U.S. Dramatic Competition): “Cha Cha Real Smooth” (Director and Screenwriter: Cooper Raiff) – Premieres January 23, 1:45 p.m. PT From writer-director and actor Cooper Raiff comes the story of a New Jersey party starter, Andrew, working the Bar Mitzvah circuit after college who meets his match in a suburban mother Domino (Dakota Johnson), then begins sitting for her autistic daughter Lola (Vanessa Burghardt), bringing him closer to their family. Newcomer Vanessa Burghardt, who is autistic herself, plays Lola. RespectAbility team members provided consulting services on Burghardt’s role in this film. Feature (U.S. Documentary Competition): “I Didn’t See You There” (Director: Reid Davenport) – Premieres January 24, 10:45 a.m. PT Spurred by the spectacle of a circus tent that goes up outside his Oakland apartment, a disabled filmmaker launches into an unflinching meditation on freakdom, (in)visibility, and the pursuit of individual agency. Feature (Premieres): “Sharp Stick” (Director and Screenwriter: Lena Dunham) – Premieres January 22, 5:30 p.m. PT Sensitive and naive 26-year-old Sarah Jo lives in a Los Angeles apartment complex with her influencer sister and her disillusioned mother. She is also a wonderful caregiver to Zach, a child with an intellectual disability. Eager to lose her virginity, Sarah Jo embarks on an exhilarating affair with Zach’s father, Josh. In the wake of the doomed relationship, Sarah Jo grapples with heartbreak by dedicating herself to unlocking every aspect of the sexual experience that she feels she’s missed out on for so long. Feature (U.S. Dramatic Competition): “892” (Director and Screenwriter: Abi Damaris Corbin) – Premieres January 21, 10:30 a.m. PT When Brian Brown-Easley’s disability check fails to materialize from Veterans Affairs, he finds himself on the brink of homelessness and breaking his daughter’s heart. With no other options, he walks into a Wells Fargo Bank and says, “I’ve got a bomb.” As police, media, and family members descend on the bank and Brian, it becomes clear he’s not after money — he wants to tell his story and have what is rightfully his, even if it costs him his life. Feature (U.S. Dramatic Competition): “Dual” (Director and Screenwriter: Riley Stearns) – Premieres January 22, 5:00 p.m. PT After receiving a terminal diagnosis, Sarah commissions a clone of herself to ease the loss for her friends and family. When she makes a miraculous recovery, her attempt to have her clone decommissioned fails, and leads to a court-mandated duel to the death. Feature (Premieres): “Living” (Director: Oliver Hermanus) – Premieres January 21, 11:00 am PT In 1952 London, veteran civil servant Williams has become a small cog in the bureaucracy of rebuilding England post-WWII. As endless paperwork piles up on his desk, he learns he has a fatal illness. Thus begins his quest to find some meaning in his life before it slips away. Documentary Short: “75,000” (Director and Screenwriter: Moïse Togo) – Available On-Demand with a pass throughout the entire festival Highlighting the biological aspect of albinism, 75,000 focuses on the genetic and hereditary abnormality that affects not only pigmentation but the physical and moral conditions of people living with albinism. Documentary Short: “Chilly and Milly” (Director: William David Caballero) – Available On-Demand with a pass throughout the entire festival Exploring the director’s father’s chronic health problems, as a diabetic with kidney failure, and his mother’s role as his eternal caretaker, Chilly and Milly is a combination of 3D-modeled/composited characters, with cinéma vérité scenes from an autobiographical documentary shot over 13 years ago. Midnight Short: “Appendage” (Director and Screenwriter: Anna Zlokovic) – Available On-Demand with a pass throughout the entire festival A young fashion designer must make the best of it when her anxiety and self-doubt physically manifest into something horrific. Talent With Disabilities When successful actors and producers disclose a nonvisible disability, such as a learning disability or mental health condition, they help normalize these disabilities in both the entertainment world and for the general public who consume their films and television shows. In some cases, actors with disabilities appear in films that do not necessarily have disability in the plot. In several of these instances, actors with disabilities are playing roles that have nothing to do with their disability. “After Yang” features an actor with insomnia and who has dealt with addiction, Colin Farrell. “Alice” features an actor who has anxiety, depression, and polycystic ovary syndrome, Keke Palmer. “AM I OK?” features an actor who had breast cancer, Tig Notaro, and an actor who had a burst intestine, Sean Hayes. “Cha Cha Real Smooth” features an autistic actress, Vanessa Burghardt. “Emily the Criminal” features Aubrey Plaza, who had a stroke when she was 20 years old that caused temporary paralysis and expressive aphasia. A couple of years later, she had a transient ischemic attack while on the set of “Parks and Recreation.” “F^¢K ‘€M R!GHT B@¢K” includes disabled actress Emily Kranking, who has cerebral palsy. “Nothing Compares” features Sinead O’Connor, who has mental health disabilities. “Sharp Stick” features a writer/director and actor with Ehlers-Danlos syndrome and OCD, Lena Dunham, as well as two disabled actors, including one with Down syndrome and one with cerebral palsy. “The Worst Person in the World” features an actor with PTSD, Renate Reinsve. The plot also involves cancer and pregnancy. Additional research provided by Eric Ascher.