A problem often encountered by stroke patients is slurred speech. I considered myself very fortunate because I tended to slur only when I was very tired; I've been told I wasn't usually difficult to understand.
(I did have one verbal stumbing block that tripped me up every time; whenever I meant to say "hospital", "hotel" came out instead. You don't have to be Freud to figure that one out.)
One afternoon my husband took me, in the wheelchair, to a mall close to our home. He wheeled me into a store I had visited probably once a week for six years. I smiled and said hello to the manager, a very familiar face, behind the counter. She half-smiled at me, looked at my husband and asked, "What does she want?"
I know she understood me, but all she could see was the wheelchair, not the face of a long-time customer. Not someone she had laughed and talked with regularly for six years. Just the wheelchair. And since one doesn't talk to a wheelchair, she addressed my husband rather than me.
He wheeled me out of the store, and I never went back. I knew there wasn't a single thing I could say to her that would make an impression. Perhaps I should have stayed and enlightened her, but I'd already come to realize that some people never get past the wheelchair.
And the interesting thing about the wheelchair, and people's reactions to it, was that, for me, it represented not disability but freedom. The alternative for me at that time, and for everyone who lives on wheels, is bed, or a chair in a living room. The alternative is never going outside.
Now, when I see someone whizzing along on motorized wheels, I don't feel pity; I smile with remembered pleasure at the feeling of independance, of speed, and silently thank society for sloped curbs and ramps and automatic doors. I do empathize with wheeled folks who have to deal with that woman's attitude x 100, every day. I rolled many miles on their wheels after the stroke, and I'll never forget the lessons I learned along the way.
When sensation started to return to my right leg and arm, it came in waves of tingling, that intense tingling we feel when we stand up after having been sitting with a leg curled under us. The first time it happened, it was so intense it was almost painful. And I had been so long without a right side that it felt wrong to feel something there at all. My family doctor reacted by confining me to my bed and having my blood pressure taken half-hourly for a day.
In later months I learned that the best thing to do when the tingling occurred was to exercise, to push my limbs to their limit. It seemed to help cement whatever healing/rerouting of synapses was taking place. As well, I learned I could bring about that tingling/healing/ rerouting by pushing myself beyond my limits.
I had only two roommates during my stay in hospital, both elderly ladies, both well on the way to recovery.
My first roommate, 90-something, lived alone and liked doing so. She had family in town and seemed, as evidenced during their visits, to have a loving, healthy, hands-off relationship with them. She was determined to recover and get home as well and quickly as she could, so she was up and dressed early, and walked those long hallways all day long. And it worked. Although it was not her first stroke, she went home soon after I arrived on the Floor. She was tough and funny and enjoyed life. I admired her immensely, and wish I could have gotten to know her better. She has since died; I'm sure she's missed very much by her family. I miss her as the personification of the dignity and quiet courage so lacking in the world.
My second roommate was also progressing through recovery steadily and well; much too well to her mind, I soon discovered. She lived with her son, and he and family members, including grandchildren, visited regularly. She was very mobile, quite able to care for herself in every way, and sharp as a tack. And yet, time and again, I would see her waiting for someone to do for her, care for her. I suppose she liked the attention, the sense of being cared for.
I began to be aware that many of the older patients felt that way, and acted accordingly. I suppose their fears, their confusion, their stroke-related disabilities and their physical problems other than those caused by the stroke, and, most of all, their feelings of being deserted by distant or self-absorbed families all served to make the hospital seem a very warm and comforting place by comparison to the empty homes or flats awaiting them.
I came to understand why many of the RNs and RNAs were, by times, so impatient, so short with some of the patients. They worked day in and day out to help patients some of whom had no inclination to recover. It must have been very frustrating.
At the same time, I occasionally encountered a stumbling block unwittingly thrown up by the nurses and doctors; unwittingly, because they were used to dealing with elderly patients and their families, all of whom had limited expectations. More than once, I overheard family members and staff discussing what mother or father needed to be able to do to care for themselves. If he could heat the kettle for tea or boil an egg without setting fire to the kitchen, if she could get herself to the bathroom, everyone seem satisfied. Everyone was content to relegate mother or father to existence rather than refit them for Life.
At 37, I was not about to be relegated to anything less than whatever I wanted to do and/or be. I approached my rehab with the same attitude as that with which a pit bull approaches the mail carrier. I'm certain my hardheaded determination to recover—now, on my own terms!—was both novel and somewhat irritating to the staff at times.
Probably the most pleasant afternoon I spent while I was in hospital was spent away from the hospital. My husband took me to lunch at his parents' home. The drive there was short, along the bay; it was lovely. We sat in their backyard overlooking the water. The sun was shining, the flowers glowed, the food was grand (still no Coquilles St. Jacques, but no mushy peas, either), and the conversation was interesting and stimulating and had absolutely nothing to do with bleed or hospital. And I relaxed. It was so good to sit in the sun with people I loved, with no responsibilities or obligations, no need to be strong or brave or determined. I could just be. It was, surprisingly enough, the first time, although not the last, that I had the conscious thought, "I'm glad I didn't die".
Sometimes in later months, when I was so overwhelmed, I would remember that day and, for a too-brief moment, recapture that lovely sense, not of doing or producing or succeeding, but simply of being.