When she was 43, journalist and former nurse Cleo Hutton had a severe stroke. Suddenly unable to speak, understand, or even walk, Hutton struggled first to survive and then to regain her physical skills and her independence. Her book Striking Back at Stroke: A Doctor-Patient Journal combines entries from her personal journal with medical and scientific commentary by Louis R. Caplan, an expert in US stroke medicine and a member of the Dana Alliance for Brain Initiatives. Dana Press published the book in 2003 (11 years after her stroke), and we ran an excerpt of it in our Cerebrum journal, “The War of Rehabilitation.” Here’s a bit from Hutton’s journal:
June 17, 1992
I am uneasy, yet excited. Today I am leaving our community hospital to enter a rehabilitation center at a larger facility. The therapists refer to it as “boot camp.” I can’t wash my hands or position myself in bed without help. The world exists only through my right eye.
[My oldest daughter,] Paige is here to drive me the twenty miles or so to the rehabilitation hospital. It is a gorgeous day in June, and I do not want to be in any hospital. It feels wonderful to be dressed again, to be in the fresh air and sunshine. I smile at Paige and feel a bond between us that I have never known before. I convince her to go through a fast food place for a soda. She understands my pointing, grunts, and moans. I believe I am speaking clearly, but I recognize from her keen look that she has to listen diligently for every word I say.
We travel within blocks of our home and I feel that the nightmare is over. I want her to take me home and to forget all of this as if it were a bad dream. I try to be strong. I beg to stop in for a minute to see Mark and Betty Rae. I haven’t seen them for several days and my mind jumps quickly from one thought to another, never capturing an entire thought and bringing it to conclusion. I feel hypersensitive to the car ride as snapshots of still-frame pictures barrage my sight. If I close my eyes, my body seems to be moving at warp speed and I feel dizzy. When Paige makes a left-hand turn I grab the dashboard with my right hand even though I’m buckled in. I’m frightened to see Mark and Betty Rae when I seem so out of control. I want to be whole again.
“Mom, now you know we have to register by a certain time,” Paige says.
The first day at the rehabilitation hospital is devastating. As we arrive at the hospital registration area, I have to use the bathroom. I tell a nurse. Paige is busy at the registration desk, and a male nurse whisks me up to my floor, wheels me to the bathroom, and proceeds to pull my pants down to my ankles. By assisting me, he strips me of my dignity. I feel so ashamed. A male nurse had never helped me before, and it is a shock when done so abruptly. Paige returns to the two-bed ward and sits in the chair next to my bed. I try to be brave and repeat to myself, “Don’t you cry, Cleo. Cleo! Don’t you dare cry!” Paige tries to smile as she asks if there is anything else I need. I shake my head and gather a cassette recorder, pen, and paper to make it appear as if I’ve got things under control. Paige kisses me on the cheek and leaves. My world no longer revolves around the family. In fact, it is just the opposite. I have become self-absorbed. I am only aware of what is happening in the present moment and space of time. The past does not exist except for familiar faces that enter my world. I am in the bed closest to the door and if I turn my entire body to the left I can see the lady in the other bed. I begin to tape a journal entry and I hear her sob.
Caplan describes stroke recovery from the doctor’s point of view, using Cleo’s experiences and impressions as a springboard. For example, when she complains that all the tests make her feel drained (“These vampires of the laboratory always arrive before breakfast with a bright disposition because they are not going to be pricked with the damn needle”), he explains what the tests are meant to do. While they have ever more technology, he writes, doctors get a great deal of data face to face.
So Many Tests
Probably the most important clues to where a stroke has happened in the brain and what caused it come from the history the doctors take from the patient and their physical and neurological examinations of the patient. Many patients think that these examinations have been replaced by the new technologies, but nothing is further from the truth. Examining a patient is the only way to know what he or she can and cannot do. The doctor should always begin by taking a history of how the stroke came on and developed later, previous events and illnesses, various risk factors, and what symptoms and problems the patient noticed. Examination of the pulse, heart, and blood vessels of the arms, neck, and legs gives the doctor clues to abnormalities in the heart and blood vessels. During the neurological examination, the doctor checks speech, memory, reading, writing, thinking, walking, vision, hearing, strength, coordination and feeling in the limbs, and various reflex functions. The information from the patient’s examination and history helps the doctor plan the appropriate tests.
Both authors give valuable advice—about home care, emotional support, and physical recovery—from the front lines of the battle against stroke. Their wise and experienced voices make Striking Back at Stroke an inspiring story as well as an indispensable guide for anyone experiencing the changes that a stroke can bring to a life, a family, and a sense of self.
Hutton also wrote posts for us for Stroke Awareness Month (May), What the Word Stroke Means to Me in 2008; her 2009 entry, Avoiding Strokes, updates her story since the book was published.
Sadly, Striking Back at Stroke is now out of print, though you might find a used copy online. Available now, though, is Hutton’s After a Stroke: 300 Tips for Making Life Easier, in paperback and ebook. Caplan’s latest is mainly for doctors, Ischemic Stroke: An Atlas of Investigation and Treatment.
—Nicky Penttila