The successful lawyer, who owned his own firm in Orlando, Florida, was wrapping up his work day in his home office around 5 p.m., when he felt a sudden wave of anxiousness. “I felt like I should run but I didn’t know why,” Watson remembers. He stood up from his desk and knew immediately something was very wrong. The right side of his body collapsed and he fell to the floor. He tried to call out for his son, who was upstairs, but the words came out jumbled and weak. He reached for his phone to call an ambulance, but couldn’t remember which numbers to dial in an emergency. “I remember very clearly in my mind thinking, ‘This is how I die,’” Watson says. To get his son’s attention, Watson began banging on the wall with his left fist. Eventually, his son appeared in the doorway of his father’s office. At the time, Watson didn’t realize he had lost his ability to speak, and tried to explain to his son what was happening — with no success. His son helped him outside, where they flagged down a neighbor who helped get him to the hospital. Watson, who was 41 years old, experienced an ischemic stroke and spent seven days in the intensive care unit (ICU), unable to move the right side of his body. The words he had learned throughout his life swirled in his head, but he could only say one: Yes. After one week, Watson’s doctors told his wife he was on his way to recovery and he was ready to go home They told him the only thing he could do now was go to speech therapy to try to regain his ability to speak. “Most attorneys think you can solve any problem in two weeks. I thought, ‘Okay, after the hospital, I will have my speech again in about two weeks. Of course, that was very naive,” he recalls. Once he was back home, Watson’s wife tried to practice speech with him to no avail. The speech center his insurance covered couldn’t get him an appointment for three months. It was the first of many walls he’d hit during recovery, which took a huge toll on his mental health. Reality sunk in. He had been discharged from the hospital with no clear plan as to how to move forward. “I realized my life had changed a lot and I got really, really depressed around the ninth day after my stroke when it became clear that this was not going to be better in two weeks,” he says.
Challenges in Access to Treatment
According to the American Heart Association (AHA), about one-third of people who have a stroke experience aphasia, a language disorder that can affect speech, as well as auditory and reading comprehension, and writing. Long-term language loss impacts more than 60 percent of stroke survivors a year after the event. Losing the ability to communicate takes a massive toll on mental health, which is often overlooked when a care team’s focus is helping the patient regain their speech and mobility. “People are suddenly thrust into a new world where they often retain their intelligence but lack the ability to express themselves clearly. This means that in addition to their own feelings of grief and loss, they are placed in a world where they often can’t share those feelings with others,” says Crystal Johnson, a registered clinical counselor in Vancouver, British Columbia, who helps patients with chronic conditions. “Of course this can lead to significant depression and anxiety. “ According to a study published in December 2021 in the journal Topics in Stroke Rehabilitation, people with post-stroke aphasia are more than 7 times as likely to experience depression than adults without aphasia. For Watson, depression was the hardest part of recovery, and every time he faced an obstacle that prevented him from getting proper treatment, his depression got worse. For example, when he found out his insurance would only cover 40 hours of rehabilitation, and he’d have to choose between therapy for his mobility or speech. “Even though my body was weak, I decided to use all my hours for speech. I wanted to talk again. But the 40 hours wasn’t anywhere close to what I needed,” he says. When the 40 hours of therapy ended, a new wave of depression washed over him. It was only mid-March and he’d have to wait until the following January to get 40 more hours covered. Until then, speech therapy would cost him $900 an hour. More than two years after his stroke, he’s still trying to get approved for disability. The stroke also took a toll on his marriage, which ended in divorce, which Johnson says is common, since caregivers often also lose the future they thought they would have. On top of that, Watson also lost his law firm and has struggled to get a new job due to his aphasia. “People with aphasia have anxiety about how they will cope in a new world. These changes in communication also mean changes in self and perceived identity,” says Johnson “If a person is of working age, they may no longer be able to participate in their professional world which has huge implications if their job was a part of their identity. For others, communication impairments mean changed abilities in how they interact with loved ones so even the typical supports may not be available in the same way.”
Grieving Your Old Life, Moving Forward
In mid-2020, Watson found a spot in a friend’s speech rehabilitation clinic in Jacksonville — an intensive six-week program in which he attended four sessions. The clinic had group talk therapy as well as one-on-one sessions with psychologists, but he found the most support in his speech therapist, Kayla. She told him he needed to bury his old self, to grieve his old life so he could move forward with his new one. “There is a point in your recovery, you have to give yourself permission to grieve about your prior life. I thought that my dreams were done and I got really anxious when I tried to go back to my old life,” explains Watson. “I had to realize that I will never be the same person and grieving helped me to bury my old self so I can go forward.” According to Johnson, post-stroke mental health care is often left to social workers and speech pathologists who are not necessarily trained in psychology. Despite this, they often play a key role in engaging patients, since patients are already receiving care from these people and they often play the role of mental health support during that time in addition to the speech, physical, or occupational therapy they provide. Providers in the care team other than psychologists should have empathy for patients whose lives have drastically changed, and receive training for basic counseling skills since they are often the first line of mental health care for this population, she notes. She also emphasizes the potency of self compassion, where people show themselves kindness as they strive to regroup and look to what comes next. “There can be a lot of changes immediately after a stroke or other neurological event that can cause great distress and upset, and many many people come to a place of acceptance and peace,” says Johnson. “It takes time and patience and an openness to fully experience the impact of the grief and losses, but it does happen.”