Every year, half a million Americans are struck down by stroke. Most never recover anywhere near the basic health they had when they went down. But it doesn't have to be that way.
This is the story of my stroke, and how my family collaborated with Washington area health care facilities and my employer-based medical insurance. Those entities permitted me to survive long-term and gradually recover. They are still making it possible for me to rehabilitate myself.
On Saturday, Oct. 21, 1995, I did what came naturally to a 57-year-old workaholic. I finished up a brutal six-day week and thought nothing of it. In fact, I thought I was enjoying it. There had been an Amtrak trip to Philadelphia and the start of a board meeting that night back in McLean. Then there was a trip to Manchester, N.H., New London, Conn., Boston and back. Next came a nonstop flight to San Diego and a return by red-eye from Los Angeles. Finally, there was another New England trip, then home to McLean late Saturday afternoon.
When the stroke hit, I was in the kitchen of our McLean home, fixing Sunday breakfast with my wife, Paula, for all but one of my family members.
Suddenly I felt numbness in my right arm and, very quickly, I could not move the arm at all. As I tried to explain what was happening, Paula noticed I had saliva running from the right side of my mouth. She got me to a kitchen chair, and got our son Jack to hold me there, while she ran to wake our daughter Jenna (a medical social worker) and our daughter Katy's husband, Fred (a physician). In the 20 seconds or so it took for Paula to describe my symptoms, Jenna was calling for an ambulance.
Strokes come in two major varieties--blockages and hemorrhages. Fred quickly determined that my stroke was probably a hemorrhage, an event in which blood vessels break or burst, sending blood out into and around brain cells. I needed oxygen--not blood thinners, which are used to treat blockages.
The Fairfax County ambulance crew arrived in just under six minutes. After consulting with Fred and with doctors at Fairfax Hospital, they hooked me up to an oxygen tank and saved me from far more severe effects of the stroke.
Lying on a hospital bed, I was now just a helpless body but my sudden decline triggered my family into action. My wife, a just-retired federal executive, quickly formed a research and management committee--called the family stroke committee or, in the early version of the e-mail buddy list, firstname.lastname@example.org for short. Paula ran it with the technical support of one good cell phone, four children (Jenna, Brad, Jack and Katy), two sons-in-law (Kevin and Fred) and two grandsons (Ruben and Logan). Fam.comm engaged doctors and surgeons, nurses and hospital staff members and insurance company representatives in conversations--some of them desperate--about my options. They gradually pieced together a family strategy, first for my survival, then for my recovery and rehabilitation.
It took five days of round-the-clock ER and intensive care unit (ICU) treatment before the "wooze" started to wear off. I gradually realized that I was still alive--but also that my mind and body were a barely running shambles. My right side was entirely paralyzed, from my slack cheek and jaw down to my unfeeling toes. I had no control of my bodily functions, a fact that became clear when I discovered I could still smell. I had a blank section in the right side of my vision, but I could hear all right. It was just that I could barely comprehend what I was hearing. Worse than that, I could not utter one syllable by way of responding.
Fam.comm had contacted my employer to obtain my entire primary "preferred provider" insurance policy--not the one summarized in the employee brochure, but the whole policy, which ran 120 pages plus amendments. My family needed to know as much as possible about my insurance coverage and the types of rehabilitation that I could receive once I was out of the ICU. Both fam.comm and my doctors believed that my best chance to recover would lie in "aggressive rehabilitation" as an inpatient in a hospital that specialized in rehabilitation services. But, of course, that would be very high-cost treatment.
My family visited and reviewed information about local rehabilitation hospitals. Yet, in discussions with representatives of my insurance carrier, both my family and the hospital social workers were told to limit their research to local skilled nursing facilities with less aggressive (and less costly) rehabilitation programs. Undaunted, my family and doctors relentlessly documented that my rehabilitation should be aggressive, and they eventually persuaded my insurer to cover this more expensive treatment.
My family opted for the National Rehabilitation Hospital (NRH) in Northwest Washington, which runs a 30-day "boot camp" for stroke patients. The "drill sergeants"-- nearly all women, they work as nurses, speech pathologists and physical and occupational therapists--are generally kind at heart but they are tough professionals. In just the first week they insisted that I use my left hand to eat and they got me out of my wheelchair to stand.
I was pretty foggy during my first week at NRH. I didn't know whether I was comprehending anything, until my stepson Brad broke through. There were no weekend therapies, so Brad drove over to NRH to break the loneliness on Sunday morning. He said that he wanted to resume our betting on the slate of Sunday NFL games, something we'd been doing for many years. He started going down the list of games and point spreads, alternately making his picks and mine. But when he got to the big 49ers-Dallas game, I suddenly pointed to the 49ers. Something went off in my mind that I wanted San Francisco to win because it was the team of "Hurryin' " Hugh McElhenny and Y.A. Tittle that I'd grown up with four decades earlier.
When Sunday visiting hours arrived and the halftime score showing the 49ers ahead of the Cowboys flashed on the screen, I let out a loud "Yeah!" In that one instant Paula knew that my vision was recovering to the point that I could make out words and numbers. More important, I could read them and they had meaning! She often says that that was a "life moment" she will never forget, even if it was football!
Once I began to comprehend what was happening around me, it was hard not to get a fuller sense of my own situation, and it was frightening. On the weekends and after visiting hours, when Paula had said good night and I fell asleep, I dreamed incessantly about going back to work. On more than one occasion, I was jolted awake in the middle of the night by the thought that I was alive, yes, but really "good for nothing."
By the time day broke I was all right again, because there was something so magnificently simple about my whole situation. No unreturned phone calls piling up, no meetings to attend, no planes to catch. Just tend to the basics. Go to physical therapy. Make my leg work to stand up and to walk. Go to occupational therapy. Make my arm work to squeeze or lift or type something. Go to speech therapy. Make my brain and voice work on one-consonant/ one-vowel sounds. In a curious but resounding way, although I was in a hospital bed and couldn't get up, I was back in charge of myself.
My principal neurologist was Mark Ozer, director of the NRH stroke unit. About two weeks out, Paula coaxed him into a conference call that Jack set up from New York--linking Katy and Fred from Savannah, Jenna and Kevin, also from New York, and Paula and Brad, together with the doctor, on a squawk box in my room at NRH. Ozer began by saying all the right things, like "it's too early to tell" and "we'll just have to see how he progresses." Sensing that that wasn't going to wash with this audience, he paused, looked at me, turned away, and said something like:
"Look, Dr. Phillips was almost killed, and he's damn lucky to be here at all. We're taking care of him the best way we know how, and you can count on that. But these injuries are not like a broken arm or leg, where you can set the bones, put on a cast and in a month or so he will be as good as new. More likely, the mending of some of these injuries that Dr. Phillips has suffered will not be complete, and you--and he--will have to live with some sort of condition to be worked around as part of what otherwise can be a very good and rich and perhaps even long life. But Dr. Phillips and you will have to work at it for a long time to make certain it's the smallest and least intrusive condition--far beyond what we can do here at NRH."
I would have none of it. Still the typical workaholic, if I couldn't go after perfection, my motivation would vanish. I wanted to be heroic, to show the doctors that I could do it and never mind about a "condition," which I interpreted to mean just one whisper away from being "disabled." And I equated that condition with death.
So I kept working and working, just as I had in the professional world before the stroke. I treated my injuries as transient and persuaded myself that they would mend entirely if I kept working. I learned to walk with only a cane and a physical therapist or a family member beside me in case I should fall. I learned to use my arm again with the occupational therapists, reviving and building up shoulder, arm, wrist and finger strength and dexterity, so that I could use both hands to do hundreds of little things, like shower and shave, cook and eat, and (most important) hug my wife. The therapists were very proud of me, and it was very heady stuff for me, too.
But as I faced up to the loneliness and isolation of extended blank spots that my family couldn't cover in the long Thanksgiving weekend, I fell to wondering whether my right side would fully function again, whether I would have trouble avoiding incontinence and whether the stroke would leave me impotent.
Most of all, I wondered whether I would be able to speak naturally again. That was where, I was now increasingly conscious, there was something terribly wrong--and not getting significantly better. Incessant anxiety, of course, made it that much more difficult to achieve progress.
I came home on Dec. 2. Of course I was determined to walk the minute I was outside the hospital door. I was so happy to be alive.
Aphasia and Apraxia
Several hard winter months later, Paula was becoming exhausted from driving me to and from NRH for as many as three daily therapy sessions at three different times, plus regular doctor's appointments. So we recruited two retired friends to help handle the driving for my speech therapy.
"Apraxia" and "aphasia" are the medical parlance for what was, and is, terribly wrong with my speech. Aphasia is the umbrella term for all kinds of brain-injury-related communications disorders that usually affect speech and understanding of speech, although the ability to read and write also may be affected as a result of the brain injury.
My speech disorder, apraxia, is in the aphasia family of medical disorders. It is an especially virulent case of a motor control disorder that involves the connection between my brain and my mouth. I know precisely what I want to say, but I just cannot say it! I have had to learn to use new motor-control pathways that carry the neurons of speech from my brain all the way to my tongue, mouth, cheeks and jaws.
My principal speech pathologist at NRH was Pamela Harman. She stuck with me through the really difficult times, trying somehow to plan a strategy to get my speech started, and then up and running.
She also cured me, finally, of evading my essential condition as a recovering stroke patient. I went into her office one bright day in the spring of 1996--about six months after my stroke--and announced that I had been invited to my management consulting firm's annual North American meeting, set for September. Wouldn't it be good motivation for us to set as a goal my attending that meeting? No, she said. I was flabbergasted and asked why not. She replied:
"Because, John, you're not going to be ready by September, maybe not even by next September. Maybe you'll never be ready. What are you going to say? Do you want to be humiliated in front of your business friends? How much can you take? Give yourself a break and accept your situation. Stop trying to go back to the way you were. It's not going to happen. Think, instead, about a realistic and happier life going forward."
I could not take her Dutch uncle talk. I bolted out of her office, out onto the street, around the NRH campus, crying uncontrollably. But 20 minutes later I was back in place, and we were working on "tr" blends, as in "tree" or "train wreck"--or "truth." We laughed about it later, sort of, but we both knew that she and I had hit another major turning point. In that episode, we had finally dealt with not just my symptoms about holding out hope that I could go back to the way I was, but also the disease of being a compulsive workaholic. The desire to get back to my former stress-filled lifestyle and my refusal to acknowledge that my needs had changed radically had been impeding my recovery and rehabilitation.
Pam Harman soon began talking to me about my readiness to undertake the next step in a progressive speech rehab program.
Surprisingly, I was reluctant to "graduate" to the next level of rehabilitation. The fact is, I had become dependent on the speech pathology unit at NRH. It was there that I could speak just as well as I was able to and have listeners who were anxious to help me communicate with them. After more than a year, it was my security blanket, an antidote to the outsiders who too often concluded after hearing me speak that I was psychologically ill or mentally retarded.
In January 1997, more than a year after my stroke, my doctors and therapists negotiated with my insurance companies to transfer my outpatient care from NRH to the George Washington University Speech and Hearing Center. (Actually, the companies were happy to oblige, because the transfer lowered the costs of my clinical care by more than two-thirds.)
The graduate student-therapists worked with four- or five-member stroke groups, teaching us dozens of strategies to make us more comfortable in going about our lives, so that we were managing our disabilities rather than living in frightful isolation. We practiced how to put a receptionist or a store clerk at ease by somehow explaining that "I can't speak because I've had a stroke but if you'll bear with me, we can do some business." (Now try it on the telephone!) The speech pathology students guided me through the continuing improvement of my speech, which has now reached almost an 80 percent rate of intelligibility--90 percent on a really good day!
If the injuries are not too severe and the rehab program is good, a stroke can provide a chance to build a new and perhaps a far better life. I, for example, have finally learned the importance of home and family. As distracted a workaholic as I was for so many years, I did not deserve the outpouring of love and support from fam.comm. But I'm going to take it, with exceeding thanks, and try to live up to it from here on out.
More than a year ago, we celebrated an event I thought I would never see--my 60th birthday! After family and friends spoke, including recovering stroke patients and therapists who have befriended me, I spoke, too. In fact, I led rousing renditions of "Happy Days Are Here Again" for me, and "Our Love Is Here to Stay" for fam.comm and, most of all, Paula.
John Phillips came to Washington more than 25 years ago as a deputy commissioner in the U.S. Office of Education. In 1976 he was selected president of the new National Association of Independent Colleges and Universities. He is now on medical leave from the higher education practice he founded with a national management consulting firm. This article is adapted from one that appeared in GW Magazine.
Pay Attention to the Warning Signs of Stroke
The chances of recovering from a stroke are better than ever, but the key is acting fast. Call for help immediately if you experience:
* Numbness, weakness or paralysis in the face, arm or leg, especially on one side of the body.
* Sudden dimness or loss of vision in one or both eyes.
* Difficulty in speaking or in understanding speech.
* Sudden severe headache with no apparent cause.
* Unexplained dizziness, unsteadiness or sudden falls, especially in conjunction with one of the above symptoms.
For more information, contact:
* The American Stroke Association (a division of the American Heart Association) at www.strokeassociation.org; 1-800-553-6321 or 1-888-478-7653 (1-888-4STROKE).
* The National Institute of Neurological Disorders and Stroke at http://medlineplus.nlm.nih.gov/medlineplus/stroke.html.
CAPTION: John Phillips of McLean, shown here with daughter Katy Karkowski, says his family's efforts were essential in helping him recover from a stroke.
CAPTION: Phillips practices making sounds during a speech therapy session at the George Washington University Speech and Hearing Center.