Out of the Silence
Reflections of a woman's recovery from stroke.
Reflections of a woman's recovery from stroke.
For quite a number of years this story has remained untold because at each venue it was viewed as reflecting a topic in which there would be little interest. The following is posted because I had promised the co-author, now deceased, that I would do everything possible to tell her story, in hopes that her experience might bring insight and compassion for others like herself:
I’d been teaching, high school mostly, for several years when I met Ellen. After the school day once each week I volunteered at a local longterm care home, offering art classes for the home’s residents. One day the home’s administrator wheeled Ellen into the group and suggested she might enjoy the socializing so I suppose that meant that she joined us. She was a recognized installation from the hallway because she always sat in the main lobby gesturing and calling out, “too-eee!” “too-eee!”
Having survived a stroke the previous year, Ellen could speak only the one word, “too-eee”, but had a vast repertoire of facial expressions and one-armed gestures. The timing of her responses indicated to me that, in addition to significant cognition, a wonderful sense of humor was quite intact. Further investigation revealed that Ellen, a widow, was a lifelong resident of the community in which the care home was located. The stroke had severely and permanently incapacitated her resulting in her residence in the town’s skilled nursing facility. Here was a woman who could not walk unaided, who could not speak, and who did not have the use of her right leg and arm. Her hearing was no longer sharp and macular degeneration made typing, reading, or writing out of the question. She could not dress herself or provide for her own personal cares, and had a challenge feeding herself. Yet she continued to participate as possible in a wide range of activities, ever-so-slowly maneuvering herself around in the clumsy wheelchair by pulling with her good foot and pushing with her good arm.
The social worker assured me that Ellen had been evaluated about three weeks after her stroke. A speech pathologist had given Ellen a sheet of paper with photos, e.g. a toilet, and words in 12 point font and that she was unable to accurately match objects with their names. I noticed that Ellen seemed to track conversation accurately and wondered if there might be some way to connect beyond nodding and smiling. The extreme turn of her head and nearness of her face to the paper when painting gave me an idea. Using a large marker and pieces of 9 x 12 paper, flashcards were produced using words associated with basic conversation and with our class. She repeatedly pointed to specific choices on the flashcards, eg. red instead of blue, one pattern rather than another. Next, some significantly enlarged pictures of basic signs from American Sign Language were offered and everyone in the class learned the signs for “hello” and “good-bye”. Ellen was able to join in appropriately using the signs. When the class began work on a booklet describing their memorable experiences, Ellen listened, then gestured, shrugged a lot, and moved her head from left to right, the typical nonverbal “no”. How might a nonverbal, hearing and visually impaired person tell a story? I wondered, “Did she have any photos of her life?” The response was a smile and enthusiastic nodding of “yes” accompanied by repeated exclamations of “too-ee!” “too-eee!!”
Over the next weeks, through a series of trial and error, we progressed through a series of signs, gestures, facial expressions, and her photos, to a question-and-answer technique (Q & A). The Q & A involved a packet of words arranged by category, such as emotions, objects, tools, etc.. I asked Ellen a question, to which she would respond “yes” or “no” with a gesture or nod, or by selecting a photo, or pointing to a specific word or phrase corresponding most closely to what she wanted to say. The words and phrases were written in bright colors in large nib marker on 9 x 12 cards. Arranged by category I would read through each option as many times as necessary for her to make a selection. Although very time-consuming, and although the eventual decision was undoubtedly influenced in some way by my participation, we moved from a few apparently random gestures and exclamations of “too-eee!” to a modified system of communication.
This continued to be refined over a period of several years and led me to wonder if Ellen would be able to provide sequential, logical information which could be subsequently checked for factual accuracy. The first part of our experimental project involved the composing of a short personal sketch. Part two offered the opportunity for Ellen to “tell her story”, to explain what life for her had been like since her stroke. Here’s what Ellen had to tell us:
“I’ve always enjoyed the outdoors. Some of my favorite times have been spent with my husband hunting and fishing or just walking in the woods. My other great joys in life come from my family; watching my son and grandchildren grow and finding lives of their own. Since my stroke, I cannot speak and find ‘writing’ with my other hand very, very difficult. There is a lot of pain and stiffness on the affected side of my body, like this contracted had, which makes it hard to concentrate. Oh, for a good massage!!! I do my best to stay active by participating in the activities offered here. When we were invited to review our lives through words or pictures, there seemed to be nothing I could do. Then it was suggested that I bring some of my photos, selecting ones which could communicate a message about my life. These words have been put together with the assistance of a woman I’ve worked with for three years. Some day, perhaps our science and technology will find a way so people such as myself might speak independently. Until then, we search for creative ways to transcend the silence.”
“I passed out. I think I was at home, cooking in my kitchen, and just fell over. I woke up in the hospital; I couldn’t feel anything or talk because of the tubes in my mouth. I couldn’t hear or move. I don’t remember being able to see, but I was not in pain. It was very confusing, having absolutely no idea what had happened to me. Later I learned that my family had found me in the kitchen and were at the hospital when I woke up. I was only lying there on the floor a short time because they had been visiting. It was very lucky on my part because I live alone. It was my family who told me that I had had a stroke.
It was weeks before I could hear anything; it was very confusing, frustrating, and frightening. I felt very angry and helpless. After a few days the tubes were removed, leaving me with a very sore throat and the discovery that the only sound which would come out was a noise. No words. Not only was this extremely frustrating and confusing, I was sad and scared. Hours after awakening the pain had begun, especially in my neck and groin. I couldn’t tell anyone where it hurt. After awakening I tried to move but only one side of my body would respond even a little bit. Weeks passed. Slowly I began to have some sensation in the affected side of my body, an unwelcome and increasing sense of pain. Four days after awakening my sight returned. Each experience was one frustrating, confusing event after another.
It seemed like a short time that I was in the hospital, a few days maybe. Then I was transferred to (a skilled nursing home] in the neighboring town of Marshall, where I lived for about seven months. As they moved me into my room there and left I felt very scared and abandoned; still confused and frustrated at not being able to communicate. Although weeks passed before I became comfortable there, I grew to like the people and the place. Well, I liked the people, but (with a smile) not so much the place. I would rather have been in my own home! By that time I was feeling well cared for and could experience a little bit of peace with my circumstances.
The staff provided speech, physical, and recreational therapy. With help, I could stand again!!!! And, sort of, walk! During physical therapy I felt happy, safe, and comfortable. I could feel strength again, both physical and emotional, and patience , at times. I made some special friends there, especially among the nursing staff. One person in particular, I will always remember. It was she who helped me to move again, my physical therapist. To be able to move my arm and leg, what relief!!!! I was very happy, although still a little scared and confused. But such accomplishment, such progress!
Suddenly one day my nurse told me because I was from the town of Lauralville, I was going to be moved to a home there. I wanted to remain in Marshall, but my family didn’t want to drive the 30 minutes and asked to have me moved to Lauralville. I tried to tell them I wanted to stay where I was, but how could I get through to them?? I couldn’t speak. So now I am here. Physically, my condition stays basically the same. My eyesight worsens as does my hearing, but since I learned how to gently stretch my muscles in my right arm, it has a little more flexibility and less pain.
Some things I don’t miss so much, like walking by myself, my kitchen (big grin), or sex (waves it away). I do miss my home, having physical strength, of course I miss speaking and my family, and visiting other people. I also miss good food, the friends I made in Marshall, and fishing Another aspect of my life I miss is freedom, to come and go, to be my own woman, to use a telephone, and decide daily affairs ( I have a guardian). I also miss love, affections, and intimacy.
Besides being handicapped there are still things that I enjoy and am able to share. These include love, affection, emotions, physical feeling, patience, and just being ALIVE. It also helps to have my sight and hearing, or what is left them, and to feel safe and cared for. When I had my stroke, I did not cease to have needs. I, too, need to give and receive love and affection, to have my feelings recognized as valid, to experience accomplishment, to see some evidence of further recovery and continued relief from pain. I need to see my family, to walk with help, to be able to visit as well as have my need for privacy respected. I need to have some sense of the future, to have someone really know me, to have a chance to tell my story. I have no need at all for pain, frustration, fear, or the feeling of being abandoned, of being a burden. I don’t even feel the need for much freedom, although it would be nice to have a bit more than I presently have.
Today, now, I feel a sense of accomplishment. This comes when I reflect on my family and that I am able to tell this story, my story. I also feel more patience, somewhat happy, comfortable, and peaceful. Mostly I feel a great sense of relief at finally being able to share my story, at finally being able to tell someone what I think. Yes, oh yes, I STILL CAN THINK.”
Thank you to Stefan Schutt and small histories for allowing Ellen’s story to be told.