The Word Escapes Me: Voices of Aphasia

The World of Aphasia In the land of aphasia, a persistent voice echoes, "Here, here! No! Yes,” pointing to a cup. Does this mean “Want water, yes or no?” “No,” says the voice. Maybe it is asking for juice or just trying to make sense of a jumble of language. Here, it is challenging to get out the words. Feelings of helplessness prevail, and yet, the desire to communicate and connect is still present. What happens to the person who has had a stroke or brain injury resulting in aphasia? As communication skills go awry, the person with aphasia is, but is not the same person. One person says, "I want to be a doctor." Another struggles with resuming her professional artwork. Yet another, who was married, lost his life partner due to his extensive care needs and a very changed personality. Stroke and brain trauma affect each person differently; however, each person's sense of self is altered resulting in a serious detour in his or her life journey. In the world of aphasia rehabilitation, there are many therapies to help the person with aphasia regain skills. Although aphasia affects speech and language, persons with aphasia, stroke and brain trauma are also impacted in many other ways due to changes in their communication abilities. After an individual suffers an acute brain trauma and is hospitalized, assessments are made by the therapy team regarding ambulation/gait skills, gross and fine motor skills, and receptive and expressive language skills. Each professional works on the individual’s treatment plan and objectives in an effort to facilitate increased skill level and independence for these patients. The persons with aphasia are then introduced to many therapies as needed, such as physical, occupational, and speech-language therapy. In addition to receiving different therapies, the hospitalized person with brain trauma and/or aphasia receives many visits from the doctor and has nurses coming in and out of the room constantly. He or she experiences a lot of confusion about what has happened, what is occurring while in the hospital, and what will happen when discharged. Many questions arise for the person: Will I be able to walk? Will I be able to speak? Will I be able to listen and understand? Will I be able to work? They may also have trouble requesting help, expressing feelings and just participating in social activities. There are no clear answers to give to patients, except that it will take time. Traditionally, when persons with aphasia (PWA) are discharged from the hospital or an acute care rehabilitation center, they are referred for outpatient therapy. They come for their individual therapy session on the day of their appointment for speech-language therapy, or physical therapy or occupational therapy and then leave the clinic. The therapy sessions offered will vary in frequency depending upon need and insurance eligibility and benefits. These sessions generally last about 30-45 minutes. Most facilities offer just individual sessions. There are some, however, that provide therapy groups. These groups provide the opportunity for the PWA to meet others who are experiencing similar difficulties. After therapy sessions, PWA are oftentimes left feeling alone, isolated, and frustrated. The rehabilitation process is slow and can be confusing. Facing the “new normal” means dealing with varying changes in how one functions. Certainly being able to communicate in the world becomes challenging. There are also a limited number of therapeutic centers that provide the necessary range of therapy services and social activities. These few resources and health insurance constraints oftentimes restrict rehabilitation options for PWA, and it is commonplace for them to spend many hours alone in the community. Once health insurance is used up, clinics discharge the PWA. The medical team then informs him or her that the rehabilitation process is time-limited and most changes will take place within six months post stroke. Many PWA tell me that they have been discharged from outpatient services and that they feel frustrated, depressed, and not whole. They have difficulty adjusting to this “new normal.” Rehabilitation takes time and a lot of support is needed as the PWA reenters the community. Aphasia affects speech and language, but the whole person ultimately is affected by the experience. The psychological and social self struggles to understand a changed path and significant revision of life goals and dreams. The rehabilitation process is a long and arduous road. Once discharged from the hospital, the person who has had a stroke or brain trauma may also be seen on an outpatient basis at the hospital, as needed, to continue working on their skills. Oftentimes these services are limited based upon the progress level of the person with aphasia and available health care insurance. Health insurance will frequently only pay for therapy with substantial documented progress, but progress takes time and is not necessarily consistent. There are days that are difficult for PWA and progress can seem very slow. Some patients are transferred to a rehabilitation facility following their period of hospitalization and receive therapy services there. The person with aphasia has to deal with shattered hopes and dreams and the loss of life as they knew it. The creation of a therapeutic community has been our solution to the feelings of lost identity and the struggles of working towards regaining skills and maintaining relationships. As much as rehabilitative therapies are important for those with aphasia, so too is the support for rebuilding self esteem, recovering from feeling like "damaged property,” and rebuilding relationships with employers, employees, relatives, and friends. And so the story begins. Rehabilitation and wholeness are the path.