"When is this aphasia thing going to be done?" asked a caregiver.
This question speaks volumes about aphasia education, but more importantly is a step in the grieving process of aphasia. To me, an aphasia professional, this question is about denial, hope, fear, and pain. Your lives have been turned upside down. You're grateful that your loved one is alive, but it may be painful to watch them struggle with communication. You are largely powerless to do anything but keep moving, cheerleading, and researching.
Many families with aphasia can't go back to the lives they had before aphasia. The way the day used to go is no longer possible. Now there are therapies, doctor appointments, schedule changes, financial worries, and more. Whether the person with aphasia was a CEO or a mechanic, almost no one returns to work right away. Many clients who come to our Center are fresh from being rejected by their old lives and struggling to cope with this "new normal". Many clients, faced with the knowledge that their old jobs, hobbies or routines are gone, fight to get it back. Without our identities, they may think, what am I? Who am I?
It's normal to miss what you had–it was the life you made for yourself. Clients whose lives were defined by their jobs or hobbies may come to the realization that they don't really want to go back to parts of that life. They may have secretly wished to do something different or saw in retrospect how stressed and unhappy they were. Although your loved one has aphasia now, you have to make your happiness in the life that you have now. The old way is gone, and it's ok to miss it. It's ok to want to keep working on communication skills now just for the sake of improving your communication.
After some contemplation, some clients have decided that they want to help others with aphasia. Some clients have started their own businesses. Other clients have co-written books, made videos, learned to draw or paint, helped their churches, traveled, or even retired to fishing, volunteering or other hobbies. While the life you had may be so much different from the life that you have now, you don't have to let aphasia define you. Make peace with the process and guide your new lives forward one day at a time.
