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Copyright © 2002 by Ralph Robert Moore.
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june 15, 2002
Nine days after her stroke, Mary was released from the hospital.
The day of her release, April 26, was a Friday, better than all the other Fridays that had ever come before (one of the nurses, putting Mary into an unnecessary wheelchair to take her down in the elevator to the hospital lobby, told me most people are discharged on Fridays).
Mary was able to walk on her own, after having been completely paralyzed on her right side the day of the stroke. She was still having difficulty with words. She could comprehend most of what I or Joe, her dad, said to her if we talked slow, and repeated ourselves, but there were very few words she could herself say at this point. The ones she could were mostly ready-made words or phrases like, "Okay", "That's fine", "That's good."
We decided to have lobsters for dinner that night, to celebrate Mary's return home, and in fact to cook them on our outdoor grill, something we had never done before, instead of steaming them. Mary broke lustily into her own charred lobster, eyebrows raised, big smile on her face at being back home, having her dad here (throughout the period Joe remained in Dallas, three weeks, whenever he'd come downstairs in the morning, or we'd see him when we'd arrive back home from Mary's therapy sessions that would follow this weekend, Mary would greet him with a happy, "Hi, Daddy!", instead of the "Dad" she used pre-stroke. Joe told me at one point he would miss being called Daddy by her.)
At one point while the three of us ate our lobster, I glanced up at the white counter behind Joe's head, at the mini-Stonehenge of three orange-plastic pill bottles. Mary needed to take those pills each day. To me, who had never needed prescriptions, much as Mary hadn't, their exotic pharmaceutical names evoked Greek gods, here to do sword thrusts and shield liftings to protect her. Warfarin, a form of coumadin, to keep her blood thin, to prevent any other clot from forming, and incidentally, in stronger doses, an effective rat poison; Zocor, to manage her cholesterol level; and Effexor, an anti-depressant. The neurologist at the emergency room explained to me Mary needed to take an anti-depressant because stroke victims, understandably, feel some depression after their stroke, but also because anti-depressants help repair the cognitive function.
When a stroke occurs in the brain, the clot causing the stroke swells the vein it's trapped in. In Mary's case, the vein in her brain had swollen to the size of an egg. Even though this clot is dissipated with medication, the damage caused by the initial swelling remains. As soon as the clot is gone, the brain starts repairing itself, finding different ways to rewire the same function. The word "Happiness", for example, previously popping out of the mouth at the end of a direct route from that word-generating source within the brain, now has a more circuitous route through the brain's circuitry, traveling on new bridges that are at first a bit rickety, ropes and slats across a gorge. A lot of words never make it.
And so it is, at this point, with Mary. Sometimes she can't think of the word she wants to say at all, but more often she can, but that word gets turned-over so many times before it gets to her vocal cords, "lobster" becomes "goiter". If there's only one such substitution in a sentence, it's not that difficult to figure out what she meant to say. When all the words are substituted, it's almost impossible. We have a long history of finishing each other's sentences, and simultaneously thinking a same thought completely unrelated to a current conversation, and this closeness, this synchronicity, has helped tremendously.
For example, the first Saturday morning after Joe and I brought Mary home from the hospital, she tapped my forearm, tried to say something, couldn't, thought about it, smiling, tried again, then said, "Sammies." She looked at me.
"Is there another word for 'sammies'?"
She thought about it, gave a good-natured sigh. Held both her hands up, towards each other, so that the tops of her four fingers were touching on each hand. Below, her thumbs touched, forming a sideways oval in between. She looked at the oval, made it narrower. She looked up hopefully at me. "Sammies."
It was early in the morning. Was she thinking about breakfast? "Is this something you eat?"
Okay. Progress. "Eat for breakfast?"
She gave me a comical finger wave. "Yes!" (Mary, God bless her, has not lost any of her humor through this).
"No, no." She looked startled I would think the sideways oval she had formed would make me think of eggs.
"Do you eat it with eggs?"
Sometimes when a crisis occurs, that bad luck tends to spill all over the place, rattling around the rooms, and this now started happening with us, in that things began breaking throughout our house. In those first few days of Mary's return home, our e-mail crashed, to where I could no longer access it, my personal printer and my work printer both broke, independently, the satellite for our TV stopped functioning, and when I went to start dinner for us that Saturday night, the knob for the burner I wanted to use fell off the stove (We have a Kenmore Elite stove, and love it, but God help you if it ever breaks. Because the knob fell off after I turned it on, the flame was still going on that burner. I called Sears' "24-7" hotline for appliance repair, but since it was Saturday evening, no one would come out, not only that night, but not until the following Thursday, which seemed an awfully long time to leave a burner on. Instead, the following Monday, while I was taking Mary to her first outpatient therapy session, Joe contacted a local appliance repair shop. The advantage here was the guy was able to come out that same day; the disadvantage was that after one glance at the stove he said there was nothing he could do, since the unit was sealed. We eventually did get someone out from Sears, who essentially confirmed that the knob had indeed fallen off, but who couldn't fix it because he didn't have the part, and who then charged us $75 for his confirmation of the obvious. It appears Sears' policy is that if a part breaks on one of their appliances, someone comes out to find out what replacement part is needed, charges you for that visit, and that part is then shipped, a week or two later, to the homeowner, who then must contact Sears again to have another guy come out to install the part for an additional charge. Once the first Sears guy confirmed a part was needed but he didn't have it, I told him about the Home Depot half a mile away. He smiled at my naiveté. "You can't buy the part at Home Depot, sir. These are special parts. They're Sears parts.")
Even with an eternal flame going on our stove, the three of us had a great time that first weekend home. The therapists at the hospital had suggested we practice singing childhood songs with Mary, because those tunes tend to stay familiar even after so many years, and the pronouncing can help. Joe, Mary and I sat out in our backyard garden, holding the list of suggested songs, such as "Row, Row, Row Your Boat", "Someone's In The Kitchen With Dinah", and "Home On The Range", and started singing the songs from memory, Mary's lovely voice joining ours. The problem here, though, was that all three of us realized early on in the singing of any of the songs that we rarely remembered all the lyrics, and our trio would usually devolve, after a few confidently-sung opening lines, into a sheepish series of "Dah-dah-dum, dum-dum". Joe, a few days later, solved this problem by spending quite a bit of time on the Internet, hunting down all the old songs, typing up their lyrics, and putting all the collected lyrics into booklets he called "Mary's Songbook" (He's a good man. There isn't a better father, or father-in-law, in the world).
One thing I noticed while the three of us sat out in the garden was how observant Mary had become, even more so than before. We have a family of small gray rabbits living in our back yard, in one of the corners, behind a stand of peonies and a large snowball verbernum bush. Because they are small, the young ones only about the size of your hand, it's hard to spot them. But Mary would stop singing, sitting up, pointing excitedly at the peonies, even when it would take Joe and myself another half minute before we saw the long ears emerge. I've since noticed this increased observational power of hers dozens of other times, in a variety of situations, and wonder if the world as a stroke victim sees it, where nothing initially has a name, is somehow more vibrant than the world we see.
The following Monday, April 29, Mary started her outpatient therapy at a Dallas rehabilitation center.
We heard of the rehab center from one of the therapists at the hospital. I did a search on the Internet, and all the comments I read were favorable. They specialized in helping people with brain damage.
Although they offered shuttle service to and from the center each day, I opted to drive Mary both ways instead, so we'd have more time together. I also wanted to sit in on Mary's sessions her first day there, to get a better idea of what her therapy would be like, and how the staff were.
They had no problem with this, and in fact told me I was more than welcome to stop in anytime I wanted.
I met her chief speech therapist, a kind, caring, enthusiastic woman; her clinical manager, who oversaw Mary's complete therapy schedule (speech, cognitive and physical); and the doctor who ran the center. The doctor and I talked for about half an hour in his office, during which he answered all my questions, and offered to help in any other way he or the staff could. After that, I went back to where Mary had begun her therapy, and stayed with her for the remainder of the day while she had her different sessions.
By the end of the day, I felt good about the center. They watched the patients closely, kept up a good energy level, and did a lot of one-on-one training, which is what Mary needed at this point. The center was about a forty minute drive from our home, but it was worth the trip each day to make sure Mary got the best care possible. I was also pleased she was able to start her therapy right away, the Monday after her discharge.
Mary has now gone to the center for a little over a month, five days a week, six and a half hours a day. I meet on a regular basis with the doctor and the staff to get updates on her progress, which has been great. They tell me Mary is extremely motivated, working on problem-solving over and over until she's able to get to the right answer. The center has three levels of therapy. Mary started at the lowest level, of course, but soon progressed to the middle level, which is where she is now. She positively beamed when she found out she was being promoted.
The first few days I drove Mary to the center, we arrived early, so drove around the area killing time. We found a park only a few blocks away, and have now gotten into the routine of deliberately arriving early, so we can walk through the park hand-in-hand for fifteen minutes or so before we have to part. The park is beautifully designed, one of the best I've seen, with broad, sloping lawns, a variety of trees, including white and fuchsia crepe myrtles we watched slowly bloom during the first weeks of her attendance, and, at the bottom of the slopes, a series of gray-stoned canals, crossed by a series of short bridges, each leading to a small, stepping-stone island just large enough for an oak and a bench, ducks and swans paddling below in the water.
Each late afternoon when I pick Mary up at the center, we get in line, holding hands, behind the line of spouses, parents, and children helping their loved ones get to the parking lot. Most of the other patients are in wheelchairs, or use canes. Again, as in the hospital, there's a sense of community, in glances and occasional small talk and hope, as we all head out.
After Joe had been here for a couple of weeks, we discussed when it would be the best time for him to leave. By then, our life had settled into the new routine of going to the center each day, me doing my work early in the morning, resuming it while Mary was in therapy, and then finishing up in the evening. We decided the following Sunday, May 5, would be a good day for Joe's departure. Mary, when I mentioned it to her on the drive back from the rehab center that afternoon, understood immediately Joe needed to get back to his life in Milwaukee. We had a special meal the Saturday before his departure, which Mary helped cook, then drove him early the next day to Dallas-Fort Worth Airport. It was sad for both of us to see him go, but we were grateful for the time he spent with us, which had helped us a great deal, in so many ways.
What is our day like now?
I get coffee going in the morning, feed the cats, then wake Mary up. As we watch the local news to see what the weather will be like, I bring Mary her first pill of the day, Effexor, the anti-depressant. After we shower, while Mary dresses, I fix her lunch for her. At first she took in a sandwich each day, a quarter of which she would eat on the way to the center, sharing it with me, but then she decided she'd rather have fresh fruit. So usually I pack an apple or an orange for her, and a small plastic tub filled with grapes, or sliced cantaloupe and fresh cherries, or strawberries. I put a little piece of paper in each brown lunch bag, always two hearts entwined, with "I love you!" and some happy thought for the day. Once she's dressed, I put a NicoDerm patch on her arm, as part of her program to stop smoking (she hasn't had a cigarette since the day of her stroke, now nearly two months ago). After I pick her up at the end of the day we do facial exercises to help restore feeling on the right side of her face (initially, it seemed the only leftover of Mary's right-side paralysis was a stiff right thumb, but as she was able to communicate better, it became clear her right side is still somewhat numb); then calisthenics; then work on pronouncing words, and relearning the days of the week, the months of the year. At five each day she gets her other two pills, Warfarin to keep her blood thin, and Zocor to keep her cholesterol down. I take my wristwatch off at that point, since I use the watch as a reminder for the five o'clock pill-taking. We used to eat around eight or so, but now our dinner is usually around six. We're in bed by seven, watching TV, and asleep a little while after.
This routine is interrupted once or twice a week, when I take Mary to her cardiologist. On one of her first visits, she had a baseline echocardiogram done, to have a record of her heart as it presently is which can be compared to future echocardiograms taken once a year. They never found what caused Mary's stroke, which happens in about thirty percent of strokes, according to her neurologist, but they suspect it may have been caused by her mitral valve prolapse (the mitral valve is one of the valves of the heart. A prolapse means the valve doesn't shut all the way after each pump, so that a little excess blood seeps out). I sat in on the session, Mary, myself and the technician all watching Mary's gray and white heart pump on the monitor. Her heart looked strong. (All these decades that I've had her heart, and only now was I actually seeing what her heart looks like.)
The technician, as she recorded video of Mary's heart from different angles, told us of a girlfriend of hers in San Antonio who had a stroke. Unfortunately, the girlfriend lived alone, and the stroke happened Friday evening. The poor woman sat in the chair she had been in when the stroke occurred, unable to move, to call anyone, until someone at her office, worried, got the landlord to open the door to her apartment the following Tuesday. By then, it was too late. Too much time had passed, three and a half days of sitting in that chair. She's still alive, but she'll never speak again, or walk, or be able to understand the sounds people make when they visit her. Mary and I were lucky. Extremely lucky.
Mary and I lived a carefree life until April 17, the day of her stroke. As I said in the first Lately in this series, we never expected to have anything go seriously wrong with either of us, because nothing ever had. We were both in excellent health, rarely got sick, and are both happy, optimistic people. When the stroke hit, out of the blue, everything we held precious was shaken, violently. But not so violently we couldn't survive the shake, even with all its changes.
The first week of Mary's attendance at the rehab center, I drove up at three-thirty to pick her up as usual, happy to be seeing her again, anxious to learn how her day had gone. There was an ambulance out front, red lights revolving. I hurriedly parked the car, ran over to the entrance, went down the hallways, looking frantically for Mary.
And there she was, coming out a doorway, clutching her Communication Notebook, big smile on her face. "How you doing?"
When I wake up each morning, I lie quietly in bed, listening for the sound, in the darkness, of her breath. That gentle whoosh, when it finally comes, is like the word that made the world.
The other night, after we finished going through a Time Magazine, Mary describing what was happening in each photograph, naming the pictured objects, another part of her therapy, she talked about her stroke, which she now remembers. She never lost consciousness. She was sitting at her desk, getting ready for lunch, went to stand, and couldn't. From the expression she put on her face now, I understood she was miming the confusion she felt. "Why can't I….you know." She mimicked, at our breakfast nook table, trying, at her desk, to get up, being unable to, looking more and more confused. She raised a forefinger. "Then…then…." She tilted her body to the left, as if about to fall over sideways from her chair, waved her hand at the side that was tilting. "You realized you were paralyzed." "Yes."
I got up, went to a nearby bookshelf, and brought back something I had put there. Those first dark, dark days of Mary's stroke, when Mary was still in the Critical Care Unit, and no one knew which way things would go, I tried once again to eat something, this time in the Chinese restaurant in the hospital lobby. As I said last week, I ordered sweet and sour shrimp, but couldn't eat it. I slid the whole meal into one of the trash receptacles. But I did keep the fortune cookie.
I showed it to her now, two months later. Still in its clear plastic wrapping. "Someday, not yet, but someday, we'll open up the cookie, and see what the fortune inside says."
She smiled that same smile I've loved for over twenty years, that smile that never gives up. "Yes. Someday."