This story just goes to show you that having a stroke in the hospital with a stroke doctor knowing you are having a stroke right now doesn't help. Your doctor literally can do almost nothing.
Recovering from Stroke: A Personal Odyssey
Late on the night of Jan. 29, after my customary late-night
reading, I fell into a troubled sleep. I awoke knowing something deep
inside me was wrong. I wasn’t aware of where the problem was—only that something was amiss.
I remember pulling myself up in bed, hoping the feeling of dread and
malaise would go away. I went to the bathroom and headed back to bed,
when my husband, Brown—who usually sleeps like a log—heard me and called
me to come into his room.
“What’s wrong? You never shuffle your feet like that,” he said.
From Bed to Hospital
That response galvanized him into action. He called our physician daughter, Emma, who advised what to do. I remember I had time to pack my book and meds, and change into my best tartan Scottish nightie, before being trundled into a rescue squad vehicle parked outside the house.
Even in mortal danger, you worry about mundane things. I remember hoping ruefully that the neighbors didn’t see the flashing red lights outside the house.
At the Cornwall ER, I had a CT scan, and it seemed that I had a TIA—a transient ischemic attack—a prelude to a stroke.
After the initial flurry of tests, and a talk with the ER doctor, I settled down to read—a faculty that’s never deserted me throughout this ordeal.
All of a sudden, I realized I could not make intelligible words in speech or in my head. I pushed my call button, and the doctor said, “I thought this might happen—you’re having a stroke right now.”
As there were no beds available at the hospital in Lansdowne, it was not until early morning that I was transported there by a rescue squad crew—where I recognized the worried faces of my family around me.
Even in my state of confusion—where medical personnel noticed a slight facial droop and inability to speak—I was aware that the high level of activity around me was not a good omen. The nurses were efficient and kind, but I remember being irritated that they were talking as if I could not understand. But I could.
I remember getting upset about having to have an MRI, and in my mind I was refusing to do so unless they “put me out completely.”
The next couple of days are hazy, but I remember my family by my bedside, helping me to recover speech and memory.
The ability to speak began to return—slowly. As my older son said recently, laughing, “You could say you were speaking ‘fluently’—but in a language that was intelligible only to you.”
“Do you remember your name? Who were your parents? Where did you live before you came to America? When and where you were born? Can you count to 10?” At first I couldn’t hold a pencil, but slowly could manage a few wavering strokes on the page.
A trio of doctors came and looked at me gravely, along with physical, occupational and speech therapists, to assess the depth of the damage. My daughter worked tirelessly with the Lansdowne doctors to get me transferred to the Inova Mt. Vernon Hospital Rehabilitation Center in Alexandria.
Two days later, I was admitted to the rehab unit with a diagnosis of “stroke with severe language deficits.” For a writer, that was a devastating diagnosis.
I realized I had been very, very lucky—it could have been so much worse. My husband’s and daughter’s quick actions in getting me whisked to the ER in a matter of minutes was crucial, and, sadly, many stroke patients are not so lucky.
Going Back to School
At Mt. Vernon, I began a 14-day course of intensive PT, OT and speech therapy. Patients had to state a goal on the chalkboard on the wall.
Mine was simple: “I want to be able to write again.”
The neurologist treating me ordered another MRI and a CT scan, during which he found the affected stroke area was much larger than originally understood.
The stroke had hit on the right side of my body, leaving me with a tender scalp and gums, difficulty in swallowing, a sore ear lobe and eye socket, muscle problems in the scapular, and significant and painful arthritis in hand and fingers.
For days, I couldn’t move or use my hand properly, and I had great difficulty controlling my arm—which turned into a significant weapon that the unwary soon learned to avoid. During a family conference, my younger son eventually removed the pencil I was waving in the air—“you’ll poke my eyes out with that thing.”
The intensive therapy made feel me as if I were at school again.
We worked on balance and rhythm, as well as speech. The therapists were no-nonsense professionals who gave patients their best, and made it clear they expected the best in return.
“You’re very motivated; you want to get better, and that is important,” the speech therapist told me.
When I left the rehab center after two weeks, I had made significant progress: The right arm was no longer bashing everyone in sight. Typing was still beyond my reach—I, a formerly very proficient typist, could not control my fingers to touch each key correctly, producing a garbled mix-mash of numbers and letters.
The biggest improvement was in speech. Through that arduous work, I discovered the brain is a very complex organism. Every day we worked on a variety of visual and mental exercises to tease my recalcitrant brain back into action, and I began to understand where my memory could expand and where it would balk.
My reading comprehension had never left me, and speech got more fluent each day—but reading aloud was another matter.
“That’s governed by another part of your brain,” the therapist said.
On the day before my discharge, I finally achieved the goal set for me by the neurologist: “I’m not going to let you go until you can say, ‘No ifs, ands, or buts.’”
That sounds easy—but not if you’ve had a stroke. I felt like an A student when I finally accomplished the task.
During that hospital stay, I was buoyed by the love and support of my family, my grandchildren and my friends. My window sill was the envy of all—filled from side to side with beautiful flowers that gladdened the heart.
I couldn’t have done it without them.
Coming Home
Coming back into the wider world was both heartwarming and a bit daunting. You have to set up a regular schedule for ongoing therapy, get home help and drivers to take you to appointments. After several months, I craved days when I didn’t have to go to a medical appointment or therapy, and I could be just alone in my house with my husband—and my garden.
You also have to endure the curiosity of others, who are not quite sure how to approach you, knowing you’ve had a stroke. In a moment of truth, you remember the times when you yourself weren’t quite sure how to react in similar situations.
Now, when people realize it is still the same old Maggie, I just laugh and say “look, when I can’t find the words I want, you’ll just have to imagine we’re playing charades and you’ll have to guess what I’m trying to say.”
Relieved, they join in the game happily, and the awkward moment passes.
My first “outing” was an emotional one—giving remarks at a memorial celebration of a dear friend. I did it in tandem with another good friend, whose presence and that of my daughter, who was ready to chip in if I lost it, helped me get through it.
I also spoke recently at Oatlands Plantation at a World War II commemoration, as a Briton who grew up in rural England in the shadow of Hitler’s Germany. Partnered with my husband, and my daughter in the audience, that backup was crucial.
I have learned the efficient use of short bullet notes, as I cannot yet read fluently from the written word.
The Hard Part
I continued my speech therapy on an outpatient basis, at Blue Ridge Speech and Hearing Center of Loudoun County in Lansdowne, where I have been working with licensed speech-language pathologist Elisabeth Miller, a 20-year industry veteran who treats both adults and children.
The only nonprofit to provide speech and hearing services in Loudoun, particularly in rural areas, the clinic was established in 1964 by the Junior Women’s League. Fifty-three years later, it is still going strong.
The prevailing advice to speech patients is that “you make the most gains in the first three to six months, and then on a much slower track until about a year and a half, or possibly more.”
That assessment so far has been true. At first, I did speech twice a week, but on the advice of my neurologist Dr. Chawla, and Miller, we upped it to three days a week, to get the most out of that first six-month period.
It’s been tough, and I’ve found my early cockiness rapidly evaporating under the intense work with Miller. The farther away you are from the stroke, the harder it gets. But we have mutually agreed to cut it back to once a week, based on my progress.
“Many of my patients I would classify as having moderate to severe problems: I’d rate you as mild,” Miller said recently.
She put me under a rigorous, data-based, routine—which I like because I want to analyze where I have difficulty.
For instance, she’s helped me to “expand the envelope,” as I put it—to make groupings and associations of different words. She times me to see how many words in a specific category I can come up with. Then she’ll show me all the other words I could have found—as a wordsmith, that’s been a galling experience.
Another test that I’ve hated—but see the necessity to help bring back memory—is giving me strings of unassociated words to repeat, and, worse still, asking me to do so in reverse order.
The analysis shows up in my beloved crossword puzzles: I can find the more difficult clues easily, but the small, obvious words that may have two meanings—my mind won’t expand to include them. (Drives me crazy).
My typing skills are much improved—there are fewer numbers mixed in with the letters. But, I find I have to edit what I write more carefully. Aphasia is a common result of a stroke—in my case I can find that I’ve inserted a word in the sentence that my brain had no idea I put in, or I’ve repeated the same phrase later on, or inverted words or left “connecting” words out altogether. Luckily, when I read it back, the brain tells me something is wrong, and insists I go back to find the error.
As I sit in the waiting room waiting for my appointment, I’m struck by the age range of patients, and wonder if there’s any common denominator as they try to discover new pathways to brain health. Miller says patients all react differently, whatever their age.
If there is any common characteristic, it’s their attitude to recovery, their pluck and willingness to participate in therapy and follow through with home program recommendations. The spirit and will to accept their “new normal” is all important, Miller says.
Like all homework, what you put into it is key.
The Future
I’m hopeful. I was told at Mt. Vernon I might not get back to where I was before Jan. 29, but, I can easily live with where I am.
I still have “deficits,” but I have no facial droop; my speech is more fluent and improves every day; I can talk, type, walk, dress, cook, go out with friends; and I have a wonderful band of family and friends at my back.
Best of all, I’ve accomplished the goal I set myself that first day at Mt. Vernon. I can write again.
My advice is to hang onto your sense of humor and courage, and keep finding new ways to “rewire” your brain. If you fall down, just get up again and keep going.
mmorton@loudounnow.com
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