Let me explain. I am a recovering stroke patient at GW, attended by Dr. Bryan Arling, Clinical Professor of Medicine at the GW Medical Center. I am also a recovering speech rehab student at GW, attended by Darlene Williamson, Clinical Director of the Speech & Hearing Center, a service of Columbian School of Liberal Arts & Sciences. This comfortable interaction between health-care and professional-education providers at GW is my “perfect union.” And it gets better every day as I get better too.
Every year, half a million Americans are struck down by stroke. Most of us never recover anywhere near the basic health that we had when we went down. For those who do not die shortly, most of us end up in nursing-home or at-home beds for which life is as mindless as death. According to the Government Accounting Office (GAO), only one-half of one-percent of us ever return to our jobs.
This is the story of “my stroke,” and how my special family collaborated with the Washington area health-care delivery system and employer-based medical insurance companies. These three entities succeeded in saving me from almost certain death. They permitted me to survive long-term and gradually recover. They are still making it possible to rehabilitate myself. A large part of this success is because I have GW on my side.
On Saturday, October 21, 1995, I did what came naturally to a 57-year-old workaholic. I finished up working a brutal six-day week, and thought nothing of it. As a matter of fact, I thought I was enjoying it. I didn’t notice my slurring speech as the day wore on.
An unavoidable pile-up of client committee and board meetings meant that I had to be literally all over these United States that week. There was an Amtrak trip up-and-back to Philadelphia, calculated to make an overnight board meeting in McLean VA. Then there was a USAir and Hertz trip to Manchester, New London, Boston, and back. And there was a United non-stop to San Diego and back by red-eye from Los Angeles. And finally, there was another USAir and Hertz trip in reverse order, to Boston, New London, Manchester, and then back home to Washington late Saturday afternoon.
I sat down to enjoy a big pasta dinner with my son Jack and some of his friends who were in town for the Marine Corps marathon that was to start early Sunday morning, October 22, 1995. I was supposed to drive him in to the start of the race at the Lincoln Memorial, and to be available with re-supplies of water at the halfway mark.
I never made it to the race, and neither did my son. And thank God, because if I had been driving a car on the George Washington Parkway when the stroke hit, I could not have made it to the hospital. As it was, I was in the exorbitantly fortunate position of being in the kitchen of our McLean home, fixing Sunday morning breakfast with my wife Paula, with all but one of my family members -- including three health care professionals -- right there in the house.
I suddenly felt numbness in my right arm and, very quickly, I could not move the arm at all. In trying to explain what was happening in slurred speech, my wife Paula noticed I had saliva running from the right side of my mouth – and this generated an instant flashback to reports of my mother who had suffered a stroke ten years earlier. Paula got me to a kitchen chair, and got Jack to hold me there while she ran upstairs to wake daughter Jenna (a medical social worker) and the other daughter Katy’s husband Fred (an internal-medicine MD). In the 20 seconds or so it took for Paula to describe my symptoms, Jenna was already calling for an ambulance.
The ambulance crew from Fairfax County Hospital got there in just under six minutes. The oxygen tank they brought with them saved me from far more severe effects of the stroke on my brain by the time I reached the hospital 20 minutes later. I’m told that it was amazing what they did for me. But I couldn’t even hear the siren.
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It turns out that strokes come in two major varieties – blockages and hemorrhages. Blockages can be either a blood clot or a vessel constricting (in combination with plaque that has built up on the internal walls of an artery). The oxygen can’t get through to the brain, and, after a brief time of continuing blockage, the brain cells start to die for lack of fresh oxygen. A hemorrhage is an internally-generated event in which blood vessels break or burst, sending blood out into and around brain cells. And, again, after a time, the blood saturated brain cells die for lack of fresh oxygen.
My stroke was a hemorrhage, and when I got to the Emergency Room of Fairfax Hospital, I’m told that my natural abilities to intake breath and to swallow had ceased and one of the ER doctors had to manually assist me. I’m told that the pain in my right leg grew to such powerful dimensions that I had to be “put under” with equally powerful drugs to restore a modicum of calm to what was said to be my “shuddering and convulsive body.” That permitted other life-saving efforts to go forward, including tests to provide a correct diagnosis, and “intubation” -- a tube insert running from the oxygen tank through my mouth and throat into my lungs, and from there the oxygen flowed to my brain.
Whether it’s a blockage or a hemorrhage, the issue is essentially the same: Will the family of the stroke victim authorize surgery to relieve either a blockage or hemorrhage, so that the brain can begin to take in oxygen on its own again before the brain cells die. It’s a tricky question because of the difficulty in estimating just how much the surgery, itself, is going to relieve -- or possibly add to -- the patient’s permanent brain damage. And the decision must be made while all else is in physical and emotional disarray, maybe even instantly, in true “ER” television style.
Fortunately, since my stroke fell into the hemorrhage category, there was no blockage that required an instant decision on surgery. And the ministrations of the ER doctors who happened to draw Sunday duty at Fairfax Hospital on the morning of October 22, had the effect of gradually bringing the blood hemorrhaging under control. So my family had several days and successive CAT-scan pictures of the hemorrhage to consider while making the surgery decision.
The traditional reactive policy that most families follow – i.e., “you do what’s best for him, and we’ll sit by and pray” -- is a dangerous thing in this ever-more complicated world of health-care. This is especially true in the case of a life-threatening emergency where everyone diligently provides the services of their health-care specialty (or sub-specialty), but nobody is there to diligently advocate the interests of the patient. And, for all intents and purposes, the patient just is not there. Though he’s not yet dead, in terms of making decisions, he might as well be.
So what does a just-retired federal executive do when she finds herself in an ambulance with a body who used to be her husband? Of course, she gathers herself up and forms a research and management committee! It was called the “family stroke committee,” or just “fam.comm” as it was known on the family e-mails. Paula ran it with the technical support of just one good Motorola cell phone (an absolute “must” in this situation), four children (Jenna, Brad, Jack, and Katy), and two each of sons-in-law (Kevin and Fred) and grandsons (Ruben and Logan).
The family stroke committee engaged doctors and surgeons, nurses and hospital staff, and insurance companies in conversations – some of them desperate -- about their options on my behalf, together with assessments of risks, benefits, and costs. They addressed the issue of brain surgery along with a whole host of other serious issues that “came at them” in those first critical days and nights. And they gradually pieced together a family strategy, first for my survival, and then for my recovery and rehabilitation.
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The surgery decision actually proved simpler than most people had thought going in. The neurosurgeon called in on that Sunday morning -- based on reading the first CAT-scan plus her careful examination -- observed that the bleeding was too close to the vital expressive speech-communications network in the front-left lobe of my brain to risk surgery to relieve the pressure caused by the hemorrhaging. She also back-stopped the family committee to successfully resist the siren sound of another physician who wanted to add me (and my brain) as subjects of a funded research study. Something about testing a high-tech needle inserted through the cranium to withdraw the hemorrhaged blood. Of course the needle would have to go right through the vital speech-communications networks, but he wanted to test it on me anyway. We laughed about it afterwards as a kind of morbid “no-brainer,” but at the time it was serious.
Even though we had not talked about it, Paula knew that I would have opposed any surgical procedure that would have run the serious risk of my being left alive, yes, but not able to take care of myself. My mother, Nan Phillips, had suffered a stroke ten years earlier. She lived alone in an Oregon beach community, and by the time they found her and moved her by helicopter into Portland, she was in far worse shape than I was ten years later. She had no living will or other advance directives, so the decisions fell on me like a ton of bricks as the oldest living relation. Paula knew how much I wept and rued the day when, at the other end of a long-distance line to an ER doctor in Oregon, I failed to see my way with enough moral clarity to let him not feed her before she came out of the coma.
Against the thinly-concealed medical advice to let her die, I swept all of it away and simply made the wrong decision. She lived for another nine years, never getting out of bed, and with precious little relief from the mindless life to which she was committed. We watched helplessly while the nursing home supported by first Medicare, and then Medicaid, drained away the entire corpus of her estate that she had worked all her life for, and that she so desperately wanted to go to her grandchildren. Paula remembered that, too. So, when I slowly started functioning again, somehow I knew that Paula had made an affirmative judgment to keep me around a while longer. And from that day forward, I wanted to prove her decision had been the right one, and that I was going to come back to a full life. Maybe even to a better life than we had yet experienced with one party as a workaholic.
Looking backwards and then fast-forward again, the obvious question was why had neither one of us tumbled to the plain fact that my mother had died of nine-year complications brought on by a stroke. A hemorrhage stroke. Why hadn’t we taken action to minimize the likelihood of the medical parallel that was to overtake us -- until it was too late? You know why. Because I was going to live forever, running between planes and meetings and slabs of take-out pizza, and who would have thought that I would be “taken out” at age 57? I certainly should have thought of it.
But it never entered my mind until the morning
of October 22nd, 1995, when I suddenly knew exactly what was striking me
because of the same flashback that Paula had. I had confidently and
stupidly worked myself into a stroke and I knew it. I also knew that
a stroke does not give you any room for second-guessing or second chances.
I had nobody to blame but myself, and when the stroke almost inevitably
came, I had no choice except to deal with it straight-up, and eventually
fight back.
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It took five days of round-the-clock ER and ICU treatment before the “wooze” started to wear off. I didn’t exactly wake up, but Paula recalls the time when she squeezed my (left) hand and I squeezed back. One thing I do remember, though, was being tied down to my bed so that I could not get to the tube in my mouth and tear it out. Perhaps the ICU night nurses took pity on me and allowed me to remove it. And once I was sure that I could breathe without it, recovery was just around the corner. Right? You bet.
I did gradually take stock and 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. My vision, particularly on the right side, was impaired. I could hear all right, but I could barely comprehend what I was hearing. Worse than that, I could not utter one syllable by way of responding to what I was hearing. I wanted to cry, in part to let my family know that I understood my sorry condition, but the tear ducts wouldn’t work. Above all, all I wanted (or thought I was able to do) was just to sleep -- if I could stand the fractured dreams about getting up and going back to work that my addled brain continued to produce, yes, “in vivid color.”
But, as much as I thought my body wanted it, sleep was the one thing that my family literally had to deny me. And here we got into one of the most vexing characteristics of the “revolutionary” health-care delivery system – the emergent role of insurance companies into a policy-dominant role of prescribing patient care.
It wasn’t exactly that the hospital would deny me ER or ICU care without knowing who was going to pay for it. But it is true that the hospital was a lot more comfortable about letting my care proceed when Paula had come up with my medical insurance cards. The management consultant firm with which I am employed has an excellent “Preferred Provider’s Option” (IPPO) plan, and I also have secondary coverage under Paula’s medical family plan that she had obtained as a federal executive. In other words, there was no question that the hospital could collect their bills. But they had to follow the guidelines provided by the insurance companies to get reimbursed.
One of the first things that fam.comm did was to call my employer for my entire primary insurance policy – not the one summarized in the employee’s brochure, but the whole policy that runs more than 120 pages with amendments. It was not the kind of reading that family members wanted to do right then, but read it they did. The benefit of knowing as much as possible about my insurance coverage was the type of rehabilitation that I could receive once I was out of ICU. I was “making my way back slowly,” as documented in my medical charts. But both fam.comm and my doctors believed that, because I was highly motivated and marginally younger and stronger than many stroke victims, my best chance to recover would lie in “aggressive rehabilitation” as an inpatient in a hospital that specializes in rehabilitation services. But this strategy, of course, was going to be a high-cost treatment program, and my primary insurance company would have a thing or two to say about that.
With guidance from my physicians, my family visited and reviewed information about local rehabilitation hospitals. Yet, in discussions with representatives of my insurance carrier, my family and hospital care-providers (e.g., social workers) were being told to limit our research to local skilled nursing facilities with a less aggressive (and less costly) rehabilitation programs. My insurance policy schedule of benefits provided “unlimited benefits for all covered expenses” in a rehabilitation hospital, whereas there was a cap of 120 days each calendar year for rehabilitation through a skilled nursing facility. We will never know for certain if this influenced the initial discussions with the insurance provider because my family and doctors were relentlessly documenting and justifying that my appropriate rehabilitation was to be aggressive, so I could be on my way to a rehabilitation hospital, instead of rotting away in a nursing home the way my mother did.
In the research that Paula and Jenna had done,
they had determined that the National Rehabilitation Hospital (NRH), located
in Northeast Washington, was one of the highest rated hospital for the
therapies that we needed – i.e., Physical Therapy (PT) for my right leg,
Occupational Therapy (OT) for my right arm, and (above all), a top-rated
Speech Pathology department to address the increasingly distressing fact
that I could “be seen but not heard.”
They visited NRH, reviewed their programs, staff,
and facilities, and talked with them about the criteria for admission.
They came away with an appointment for an NRH committee to visit me at
Fairfax Hospital, and to determine whether I had “the capacity to benefit”
from the desired therapies for at least three hours a day to start.
Paula would negotiate with the insurance companies, and Jenna would organize
the effort to make certain that I “passed” for NRH admission.
The next thing I knew, every single time I would settle into what I thought was badly-needed sleep, it seemed that another member (or two) of the family stroke committee was there to awaken me, struggle to get my limp body out of bed and into a wheel chair, and to run me around the hospital while talking up a blue streak to keep me awake. And, you know, it worked! We demonstrated to the visiting NRH committee that I could stay awake for at least three one-hour periods. A day later, we were released from Fairfax and on our way. As a last gesture from the insurance companies, they made us pay for the ambulance. But never mind. They couldn’t dampen our family’s soaring spirits. For myself, though, I just wanted to get some sleep!
I didn’t fully understand what a turning point
that was for me. Looking back on it now, I can’t help wondering about
the other stroke patients who were in Fairfax Hospital at the time -- who
didn’t have a family committee to research the insurance guidelines and
rehabilitation programs, who had nobody to get them up and meet the 3-hour-a-day
sleepless guide, or who had nobody to manage the insurance companies and
keep them from cutting off all options except a nursing home. I’m
almost afraid to learn what became of them.
NRH is a 30-day “boot camp” for stroke patients, but the drill sergeants are nearly all women. They are tough professionals, but generally kind at heart. And boy, do they get results!
November 4, 1995 -- the morning after I got there:
· Fed breakfast by nurse, who insists that I will go hungry tomorrow unless I can use my left hand to eat.
· Then out of bed, into my wheel chair,
and just like that – wobbling but actually standing up(!) under the physical
therapist’s support and watchful eye. Then, dragging my right leg
through a few tentative steps in an open circular area known as The Atrium
with other stroke patients, before slumping to rest in my wheel chair.
· Back to bed for instant sleep, out of
bed again, into my wheel chair again, downstairs in an outsized elevator
to spend an hour in the occupational therapy, trying to figure out what
to do with my limp right arm that drops like a rock when it falls off the
wheel chair tray. At first I didn’t know how to gain the “feel” of
my arm actually moving.
· Lunch, bed, now really struggling to
get out again, wheel chair sitting across from a speech therapist, trying
to keep my eyes open, trying to make more than grunts of bafflement, and
trying to answer her “capacity” questions by pointing at pictures so she
could find an entry point and begin building a rehab plan. Not very
much help to her because I know practically nothing. Not even my
name.
· Bed again. Get up for dinner with
family trying to help. Trying to say words like “love” and “good
night,” but not being able to, not only due to my puzzled brain, but by
the incessant demands of sleep.
Unbelievable. Exhilarating. Beautiful. (By the way, that was the first poly-syllabic word that I could ever hang onto, months after graduation from NRH boot camp. Very slowly, but proudly, I told Pau-La that she was bea-u-ti-ful, which was true. And we both cried a lot. By that time, tear ducts were working.)
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I was still pretty woozy during my first week at NRH. I didn’t know whether I was comprehending anything, until my step-son Brad broke through in a nice way. There were no weekend therapies, and so Brad drove over to NRH to break the loneliness very early Sunday morning (November 12th). He said that he wanted to resume betting against each other on the slate of Sunday NFL games, something we’d been doing for years. He started going down the list of games and USA Today point spreads, alternating the assignment of 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 they were the team of “Hurryin’ Hugh McElhenny” and Y.A. Tittle that I’d grown up with in Oregon 45 years ago, when the 49er’s were the closest NFL team, and from doctoral (PhD) graduate student days at Stanford 30 years ago. Brad went on home without knowing that he had been, and would be, responsible for a major turning point. When Sunday visiting hours arrived, I somehow made it clear to Paula that I wanted to watch that game on television. We watched with no sound, so that she and others could talk. The half-time score showing the 49ers ahead of the Cowboys flashed on the screen, and I let out a loud “Yea!” In that one instant, Paula knew that my impaired vision was repairing to the point that could make out words and numbers. But, more importantly than that, I could read them and they had meaning! She often says that this was a “life’s moment” that 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 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 back into sleep, I dreamed incessantly about going back to work and justifying my keep to employer and insurance companies. (What else is new, when you have believed for 30 years that success at work was the only truly reliable source of self-esteem?) 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.” I had no choice but to sweat it out in overheated fright, knowing that I could not talk with the NRH night staff. Finally, at 5:30 AM, I finally learned how to manipulate the television so that the news would come on Channel 4, and I could take my mind off of my own problems by listening and trying to comprehend those two “heads” reciting overnight frights from the “real world.”
By the time day broke I was all right again, because there was something so magnificently simple about my whole situation. No unrequited phone calls piling up, no meeting to attend, no plane to catch, no mortgage bill to pay. Just tend to the basics. Go to PT. Make my leg work to stand up and to walk. Go to OT. Make my arm work to squeeze or lift or type something. Go to speech. Make my brain-and-voice work on one-consonant-one-vowel sounds like “ba” or “ca,” and then “de” or “te” and so on. See family and friends in visiting hours, and make them feel comfortable. In between times, sleep, eat, eliminate, and learn how to leave my wheel chair to stand up at the sink, and shave and brush my teeth with my left hand. And tomorrow, do it all over again, only longer and better. Simple and uncomplicated. Sometimes I almost felt a sense of relief. Why? Because, in a curious but resounding sense, even though I was in a hospital bed and “couldn’t get up,” I was back in charge of myself. As I started to consider this phenomenon, it really began to grow on me.
Don’t get me wrong. I surely didn’t control my hospital life. Not when I couldn’t go to the bathroom without a nurse to help me out of bed. On some nights, because I was unintelligible through the squawk box and, therefore, couldn’t get the night nurse to come in time, my lack of control was total. So I would have to sleep in my own waste until the blessed distraction of the Channel 4 news came on at 5:30 AM and the morning nurse came on at 7:00 AM to change the bed and get me cleaned up for another day of therapies.
But for a workaholic suddenly rendered almost mute, who had shown control-freakish behavior from time to time over 30 years, the most frustrating thing about hospital life was the interminable waiting – and the plain fact that I could do nothing about it. Sometimes waiting an hour in my wheel chair beside my bed before a nurse could break away from other more-pressing duties to get me back into bed after a therapy, or up and out of bed for a meal. Twice I became so frustrated, and the left brain side so much back in control, that I took it upon myself to make the bed-wheel chair transfer -- whereupon, of course, I went sprawling on the floor and really “could not get up.”
Each time, after a period of time (because I couldn’t/wouldn’t yell for help), when I was discovered it was as if a fire alarm had just gone off, with three or four big people getting me into bed, nurses and doctors rushing to see if I had hurt myself, and my principal nurse drawing herself up to her full height of four feet ten inches to deliver an arch scolding that included a threat to tie me down to my bed. In front of the doctor, of course, to secure an “on the chart” witness in case there were insurance or litigation problems. Remembering the tie-down back at Fairfax, I was appropriately frightened. But she was a lot more scared than I was, and it took 24 hours to get back in her good graces. But, also, interestingly enough, the interminable waiting dropped off for a few days before it resumed.
My principal doctor was Dr. Mark Ozer, Director of the NRH Stroke Unit. Since retired, he was a man who enjoyed the extensive “rights and privileges” extended to a senior neurologist, and he used them to get his way. Usually, the fam.comm concluded, his way coincided with my best interests. But just to be sure, Paula coaxed Dr. Ozer 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 Dr. Ozer, on a squawk-box in my Room 203 at NRH.
I’m sure that Dr. Ozer had not been confronted with such a concentrated display of family power before, but once he got into it, he performed admirably. Jenna and Katy led the questions, zeroing in on my therapies and also using their background as medical social workers to raise more holistic questions. “Doctor Fred” weighed in with enough MD talk to keep the discourse honest. But it fell to Jack to ask the really tough questions that everyone (including me) had been dancing around, which were “What’s the prognosis?” and “What should we and Dad be prepared for, long term?”
Dr. 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,” et cetera. But then, sensing that this wasn’t going to “wash” with this audience, he paused, looked at me, and then turned away and said into the squawk box something like this:
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 a
long life. But Dr. Phillips (and you) will
have to work at it for a
good long time in order to make certain that
it’s the smallest
and least intrusive “condition” -- far beyond
what we can do
here at NRH.
He might as well have added the “class dismissed” line, but the my family committee got the point: Keep your hopes up, but not too high -- lest you be disappointed. But guess what? I would have none of it. I don’t know whether or not it is characteristic of the workaholic lifestyle, but if I couldn’t go after perfection, then my motivation would roll up into a little ball and sink. 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 and working, just as I had on the outside. I did treat my injuries as transient, like a broken leg, from which I persuaded myself that I would mend entirely if I kept working. I learned to walk clear around The Atrium with only a cane, and a physical therapist or a family member beside me in case I should fall (and to harangue me about posture and walking straight.) I even developed a capacity of going up and down stairs, one stair at a time, in preparation for going home at the end of boot camp. I learned to use my arm again with the occupational therapists, reviving and building up the shoulder, arm, wrist, and finger muscles 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 five-day-long Thanksgiving weekend, I fell to wondering whether my right side would fully function again, wondering whether I would have trouble avoiding incontinence, and wondering whether my organs that were now reserved exclusively for liquid elimination would work for other purposes as well. But most of all, I was wondering whether I would be able to speak naturally again – because that was where, I was now increasingly conscious, there was something terribly wrong. And not getting significantly better anytime soon. That part of the wondering gradually turned to incessant worrying and anxiety -- which, of course, made it that much more difficult to achieve progress.
Thanksgiving weekend actually turned out quite nicely. Paula and Kevin cooked the traditional turkey meal and the whole family drove to NRH to share it with me out on a table set up in The Atrium. I walked around the track with grandsons Ruben and Logan holding my hand, and, to use Brad’s term, it was a “rush.” Later on in the weekend, John Callahan -- a 30-year friend from Lewis & Clark College in Oregon, in town for a sabbatical at The Smithsonian, editing the papers of Ralph Ellison and working on Ellison’s unfinished novel – walked into my room with his two daughters. Both of them are gifted violinists, and they played the most peaceful music I think I’d ever heard, out in The Atrium, where everybody on at least two floors could hear it, and be at peace too. We all had thanks.
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But other not-so-pleasant realities were setting in, disturbing my exploration of relief provided by the right side of my brain, and back to being left-side workaholic worrier. One day Jenna said something to me and I finally became aware that Paula was going home after visiting hours every single night to wrestle with a whole boatload of insurance forms and household bills before she fell into her exhausted sleep. And the boat was about to sink, not because we were yet running out of money but because I had failed to make any provisions for her to get to my funds. And, as any freshman parent knows, the issue of family money was where GW first came into the picture.
On the fringes of politics and business in Washington DC, where it seems as though pure functionality prevails among all things, you can never know – and maybe ought not to know -- who among your friends is going to “be there” for you to really rely upon in a time of severe testing such as this one.
Mike Curzan is a big gruff man whom I had gotten to know as a fellow workaholic in the managing consulting business, an exceptional attorney, and as a leading member of the GW Board of Trustees. He and his wife Mary had become friends when Mike had gone down because of an aneurysm that turned into triple bypass surgery and lots of recovery and rehabilitation time, and I was only too willing to help him (sorry to say) in a resumption of his status as a full-blown and full-time workaholic.
Mike does not fool around with very many of the right-side brain emotions. He’s a “doer.” But he shows his true character by what he does do. So it wasn’t surprising that he and Mary were the very first non-family friends that Paula could not refuse any longer to be admitted to see the barely-running shambles of what was left of my mind and body. They insisted, and then, they assisted – advising Paula continually during the mayhem. One night, when I was handed a pen to make my left-handed scrawl that would pass for my signature, I didn’t need to look up to recognize that it was Mike who had put together and would witness the document authorizing Paula to gain access to my funds to pay our mounting bills. That’s what Mike does. Sometime it’s good to have friendly workaholics to make the world go round. That’s part of the lifestyle’s charm.
By now, it was just a walk around the park to
Saturday, December 2, 1995, when I would be going home. But it seemed
that it would never come. I could get out of bed on my own, and slowly
walk around, so I packed and re-packed my belongings and generally made
a mess of the time I should have been sleeping on Friday night. Finally,
it was light out, and when Jack checked in, off the Delta Shuttle in time
to see me button my own shirt, I could believe that I was really going
home. Then Paula arrived, and then a friend and McLean neighbor,
John Morgenstern, who would drive me home, and, finally, my nurse who announced
that I had been released. Of course I had to walk the minute I was
outside of the hospital door. And pictures of everyone and hugs all
around. I was so happy to be alive. But just to be safe, we
had a wheel chair in the back of John Morgenstern’s car.
Yes, I was going home. But it was obvious to everyone (except perhaps for me) that I was going to be in for a good long time of rehabilitation work as an out-patient. There was going to be some more physical therapy, working to exercise and strengthen my right leg, and train me to keep it up on my own. Same thing in occupational therapy on my right arm, only more of the therapy because it had been more severely affected by the stroke. And, most of all, there was no way to estimate the amount or duration of speech pathology therapy, but we began with one year at NRH and then we would go from there.
Paula was already working up to gradually “un-retire” herself with some consulting assignments or even a part-time job -- not only because every day it became ever more clear that we were falling behind on our bills, but also because she needed to get relief for what could have been a full-time job as care-provider for me, which would not have been good for either one of us. Looking after a recovering stroke patient is not unlike being a concerned parent of a teenager. Despite misgivings about my making serious or even life-threatening mistakes, she had to make the tough-love decision to let go and get on with her own life as best she could. Otherwise, we both would have gone crazy with me at home.
After several hard winter months, Paula was becoming exhausted from the draining responsibility of having to drive me over-and-back to NRH for my three outpatient therapies plus regular doctors appointments. As I gradually improved, and the frequency of PT and OT began to slacken, we recruited two retired friends of ours -- Howard Holcomb and Dick Sonnergren – to handle the driving for my ongoing speech therapy. They responded with the spirit of Lyndon Johnson when he was reported to have said: “What we need around here is some people who aren’t afraid to stand right up and say ‘Yes Sir’!” Every Monday and Wednesday for seven months, Howard or Dick picked me up in McLean and drove me back-and-forth to my therapies at NRH -- leaving Paula to do what she needed to do for her own rehab – yes, family members need to rehabilitate from a stroke too!
Another reality was that we had to address the business of getting a good general-practice physician and/or internist that we could call “my doctor,” and who could gradually take over for Dr. Ozer and the other NRH doctors – who, after all, had to move on to treating and assisting new stroke patients.
It’s one of the fascinating reversals of the revolution in health-care delivery that MD specialists who “ruled the roost” a few years ago and MD general practitioners who, the last time I looked, were at the bottom of the pecking order, have now exactly switched places. The reason for this new leverage exercised by GP’s/Internists – now renamed “Primary Care Physicians” – is because they are the ones upon whom the insurance companies rely to determine what “services or supplies are medically required.”
One of the consequences of this flip-flop in the medical profession is that the good internists are deluged with patients. So much so that a number of them in the Washington DC area have had to cap their patient loads and not take any more unless, I guess, someone dies or something. Dr. John Payne, my long-standing psychiatrist (and pharmacologist), provided me with a list of PCP’s whom he considered to be excellent, including Dr. Bryan Arling of the GW Medical Center.
But Dr. Arling had needed to cap his patient loads, so Mike Curzan (stepping in again to help) got us an appointment. After interviewing us, Dr. Arling agreed to add one more patient, and I was in. Not so long ago I remember interviewing GP’s before making a choice as to whom I was going to entrust my care. But never mind. This way is much more efficient. Particularly when you get a full Professor of Medicine at GW Medical Center in addition to a wonderful internist!
Dr. Arling joined the team as my “primary care physician” during the winter of 1996. Just as Dr. Payne had been, Dr. Arling seemed to understand and to empathize with the unsteady ship that Paula and I were trying to steer, and he gave us courage to “stay the course” when it was becoming everyday more evident that this was going to be a very long haul.
Meanwhile, it was getting increasingly difficult to make financial ends meet because my accrued vacation and sick leave had been used up, and also my short-term disability insurance. It was my firm’s bonus time of year, so Paula could petition for all that was coming to me up until October of 1995. But it was time to face up to the grim fact that I was going to have to go on long-term disability insurance.
I had paid absolutely no attention to this item of my employee benefits, and I didn’t focus on the choice I had made to limit my long-term disability insurance to 60-percent of my base salary. Neither did I understand that the insurance company’s responsibility was only to make up the difference between my Social Security Disability entitlements and 60-percent of base salary, rather than in addition to SSD. Because of bonuses that were not counted in the base salary or the 60-percent allowance, the net result of these disability insurance arrangements was a reduction of my income not by 40-percent but by fully 75-percent(!)
If I had been paying attention, and I had paid the slightly higher premium for long-term disability insurance at 100-percent of base salary, my overall income would have been cut by only the amount of my annual bonus. Just dumb! And you don’t need to repeat my mistake. Before you drop this article, there is one important thing that you can do for your family in the fight against stroke and other major illnesses, and that is to make certain that you have the absolute maximum disability insurance that your employer can arrange to offer you. Right now.
One other point. I guess it makes sense
for long-term disability insurance companies to require you to get Social
Security Disability and deduct that amount from the face value of your
policy. The Social Security Administration is both kindly and efficient
about doing its part to make these two parts into a whole bundle of monthly
disability benefits. But, once you’re on SSD, as the insurance companies
force you to do in order to qualify for the private benefits, then you
must live by the SSD rules & regulations. Simply put, SSD precludes
from earning even one dollar of personal income, on penalty of losing all
of your SSD benefits. You can bet that the IRS and the SSA computers
have been known to talk to each other, if you want to cast off your disability
and earn a few bucks. The way the system is set up, being forced
to claim your Social Security Disability benefits has a strong tendency
to make you forever disabled. This simple truth has got to play a
role in the plain fact that, according to GAO, literally 99.5% of recovering
stroke patients never go back to work.
-------------------------
It was a good thing I had Dr. Arling safely sewn up, because I continued trying to be a hero about my condition. The Saturday I got home, Jack took me over to the Langley High School track, and I ran twice around before adjourning to a walk. Finally, after walking for about another half-hour, Jack took a picture of me resting on a track hurdle – leaving the distinct impression that I had been running and jumping hurdles on the same day as I was released from the hospital. When the picture came back to me as Jack’s Christmas gift, with the inscription “No Hurdle Is Too High,” it was very touching and I loved it. When I should have been taking one slow step at a time, I was encouraging family members to share my belief that, sometime soon, I was going to be back to my old self. And that made Paula and other family members feverish with fright.
I was determined to visit our grandsons in New York. Sure enough, on January 12, 1996, while walking on a snowy Manhattan street carrying two sacks of groceries, I had a seizure. Fortunately, Paula had sent Kevin out to find me when I wasn’t back from the grocery store on time. He was with me when I went down, keeping me from conking my head on the pavement. He helped me into an Indian take-out restaurant (“Curry In A Hurry”), and called for an ambulance. Once again, I had driven myself beyond good sense, and my penalty was to spend a very long, contentious, and frustrating weekend in a New York hospital.
Of course, as soon as I made it through ER, I was convinced that I was fine and ought to be permitted to go. The on-call hospital neurologist was equally convinced that I must stay in the hospital to see how the anti-seizure medication worked out, as well as tests, CAT-scans, and observation, before I could go anywhere. The neurologist won the argument by simply observing that I could go home only if I would sign a waiver of responsibility holding both him and the hospital harmless. I capitulated. Those New York doctors are really tough! But, of course, the neurologist was right.
The net result of this disastrous experience was fourfold:
First, I could not get released without submitting
to those miserable Magnetic Resonance Imaging machines for both MRI and
MRA tests. That’s the machine in which your whole body has to be
rolled horizontally into a space roughly the size of a Pringle’s Potato
Chip tube. You have to lie there, fighting claustrophobia but also
perfectly still for an hour or so, while the technicians fire imaging beams
that careen into every conceivable angle of the brain’s affected area.
Now I was sure that the cure was worse than the disease. But I survived.
And, fortunately, they found no further damage to my brain.
Second, I had to add a three-times-a-day anti-seizure
medication (Tegretol) to my already burgeoning regimen of drugs and vitamins
previously thought to be required. I am still taking those tablets
more than 2½ later, so that no seizure would dare to erupt now.
Wrong! In cases like mine, where blood pressure can suddenly “spike
up” with no observable symptoms and no apparent reason, it is important
to take anti-seizure medication and to check it regularly to be certain
that the level is in therapeutic range.
Third, and most disastrously, under the laws
of Virginia -- my state of residence -- the privilege of being licensed
to drive had to be further deferred for six months from the date of the
seizure, or until July 12, 1996. I was devastated because I had been
looking forward to driving as the instrument to freedom. By contrast,
Paula was not-so-secretly relieved, maybe even happy. And I suspect
that Dr. Arling was very happy, although he wasn’t talking.
Fourth, and by far the most important, I had
to spend three days thinking to myself about how to work my way out of
this mess. And it was strikingly healthy. Maybe I was going
to have to loosen up, to be more forgiving of myself and my condition as
a recovering stroke patient, and not kid myself about going right on, as
though nothing had happened. Something had happened, and it was serious.
I would finally have to grow up.
----------------------
Has anyone ever heard of “Apraxia?” Or how
about “Aphasia?”
I had never heard of those terms before my stroke.
They are the medical parlance for what was, and is, terribly wrong with
my speech. The master medical term is “Aphasia,” which means all
kinds of brain-injury-related
communications disorders that usually affect
speech (expressive) and understanding of speech (receptive), although the
ability to read and write may also be reduced as a result of the brain
injury. Aphasia is more prevalent than Parkinson’s Disease or Muscular
Dystrophy, with about one million Americans suffering from Aphasia today.
Unfortunately, in the official pantheon of American charitydom, stroke is considered a circulatory condition (blockages and hemorrhages of the brain), so it falls somewhat confoundingly under the American Heart Association -- where it gets about as much attention as Saturday mail deliveries. Other charitable organizations, such as the American Stroke Association and the National Aphasia Association have tried to get more public focus on the special problems of stroke and brain-injury. But obviously (since you have never heard of them, either), they don’t have the clout, and thus, most people have never even heard of Aphasia. And for those of you who have heard of it, all too many react, understandably enough, as though the person who’s afflicted is psychologically ill or mentally retarded. The resulting feelings of loneliness, social isolation, and depression, are common to almost all individuals with Aphasia.
Because of the plain social fact of general public reactions to Aphasia, my family and I have been reluctant to use the term when describing my condition. But my speech disorder was, and 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 the neurons that carry the message of how to form words to my tongue, mouth, and jaw. It is called “Apraxia.” This means that I may have some incidental difficulty locating words, but, for the most part, I know precisely what I want to say. I just can not say it. The June 1998 poster celebrating Aphasia National Awareness Week said it best: It’s “when your brain holds your words hostage.”
It all goes back to the hemorrhaging I had in the left-front lobe of my brain, which the hospital neurologist saw on the Fairfax CAT-scan was heaviest in the area of my expressive speech communications network. That was where the brain cells died. I had to start learning speech all over again, almost from the beginning. I have to rebuild the motor-control pathways that carry the neurons of speech. Or, as my step-son Brad likes to say, in the internet parlance of the 90’s, I have to “re-wire” my whole expressive speech function.
My principal speech pathologist right from the start at NRH was Pamela Harman. She was the professional’s professional, and 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 was also a saint of the health-care delivery revolution because she “managed” Dr. Arling, Dr. Ozer, and me. She’d kept us on track with the insurance companies throughout twelve months of relatively expensive NRH out-patient speech therapy, making certain that I had the continuing “capacity to benefit,” and never giving up. She just kept working away with me, trying this approach, discarding that one, and ever so slowly-but-steadily pushing me along until I saw and believed that I could never give up either.
She also cured me, finally, of evading my essential condition as a recovering stroke patient. I went wheeling into her office one bright day in the Spring of 1996, and announced that I had been invited to the annual North American meeting of my managing consulting firm, set for September. Wouldn’t it be good motivation for us to set a goal to speed up our efforts so that I could meet friends from the firm at the September meeting, I asked. No, she said. I was flabbergasted, and asked: Why not? Because, John, you’re not going to be ready by September, maybe not even by next September, perhaps never. What are you going to say? Do you want to borrow humiliation, in front of your business friends? How much can you take? Give yourself a break and simply 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.
About then, I simply could not take her Dutch Uncle talk any more, and I bolted out of her office, out onto the street, around the NRH campus, crying uncontrollably. Twenty 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 on another major turning point in the long march back from my stroke. In that one double-whammy 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, and that I had been trying to get back to the lifestyle that was the underlying cause of my stroke and had been continually daunting my recovery and rehabilitation. It’s not at all unlike plain old alcoholism . . . attending that meeting of my firm would have been like drinking a whole lot of whisky.
Speech pathologists are a fascinating lot. They make far less money than their colleagues in physical and occupational therapy. The standard rationale that is offered on behalf of these other therapies has to do with longer and more difficult academic preparation, but I suspect the insurance companies. From their standpoint, it’s far more important and cost-effective to get stroke patients back on their feet (PT) and physically taking care of themselves (OT), so their hospital stays can be shortened. Thus, insurance companies pay a certain premium, and are far easier to get money out of, for aggressive rehab in the PT/OT therapies where they can more readily use low-cost aides and classes. By contrast, the most progress can be made in speech therapies by one-on-one interaction of a patient with a certified speech pathologist, and insurance companies are far more reluctant to authorize payment for those higher costs. That leads to the perception around hospitals that it’s far more important to “walk” than to “talk,” and speech pathologists have to struggle to get due recognition and their financial fair-share among the three major stroke therapies.
The result is that, in addition to their primary hospital employment, speech pathologists feel the need to be professionally active and pursue consultancy roles – first, to keep their juices flowing and their commitment strong, and second, simply to make ends meet financially and not be forced out of the profession. The secondary result is that everybody knows everybody in the speech pathology “game” nationally -- and everybody has on their calendars the locations and dates of the next two or three meetings of American Speech & Hearing Association (ASHA), and their special-interest division meetings such as the ASHA Aphasiology Conference. Everyone in the ASHA network knows that, just as NHR has one of the best hospital speech rehab program, GW has certifiably the best professional-education program for speech pathologists in the Washington area. And moving up the chart nationally too.
Soon after our Spring epiphany -- after she became persuaded that I really and truly had taken the cure against being a workaholic -- Pamela Harman began talking to me about my projected readiness to undertake the next step in a progressive speech rehab program, which would lead to comprehensive skills in managing my disability while continuing to improve the intelligibility of my speech. She knew about the GW program because she had been on their consultant rolls, and she was acquainted with the Clinical Director, Darlene Williamson, whom she described as determined to build the clinical rehab center of the GW program as “second to none” nationally.
Aside from the acceptance of the “managing my disability” as a public as well as a private commitment, the plain fact is that I had become dependent on the Speech Pathology unit at NRH as my security blanket. It was there that I could speak just as I was able to and have listeners who were anxious to help communicate with me. After more than a year, it was my security blanket to ward off the outsiders who, because of my still-faltering speech, would too often conclude that I was psychologically ill or mentally retarded. But the more that I thought about it, the more I knew that I had to take that next step. Otherwise, I would never get over the loneliness and isolation, and the repeated humiliation.
On a professional, as opposed to a personal level, I was also reluctant to give up experienced and senior (i.e., persons of almost my own age) speech pathologists for students whose degree certifications as MA’s in Speech Pathology were months in the future tense. I didn’t have a clue about how high the GW program had grown in the national rankings, how many applications are received and the top-drawer MA students who are admitted, and who come to GW despite the far higher tuition costs compared to competing programs, almost all of whom are at lower-cost public universities. These are passionately committed students, and what they lack in experience they more than make up for in enthusiasm for being on the cutting edge of speech pathology research and teaching, and adaptation to clinical practice.
Anyway, in December and January of 1996-97, Drs. Arling and Ozer, and Speech Pathologists Williamson and Harman, did their magic by negotiating my transfer from NRH to GW. And, most important, they made certain that the insurance companies would stick with me. Actually, insurance was only too happy to oblige because it lowered their net reimbursable costs of my clinical care by more than two-thirds. GW delivers speech therapies on a most cost-effective basis because they want their speech pathology students to get real live clinical experience and that goes hand-in-hand with a commitment to community public service that all great universities possess.
I did not realize what a win-win situation it was until I took the elevator for the first time up to the fourth floor of Funger Hall and signed in for my first speech group at the GW Speech & Hearing Center. It was almost as though I had come full circle with my graduate student days at Stanford, or more to point, my first post-PhD job as an Assistant Professor at Lewis & Clark College. Only now I was the student, and freshly-minted graduate students were doing the teaching. Under the capable and insistent guidance of Ms. Williamson – usually, but not always, hiding out behind the one-way glass of the clinical speech rooms -- the working student-therapists do their own kind of magic. They work the four- or five-member stroke speech group, teaching us dozens of strategies for making us more and more comfortable to go about our lives, managing our disabilities rather than having to manage our frightful isolation. Practicing 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!
Surrounding the group sessions, they do intensive one-on-one clinical therapy sessions, always under the watchful eye of clinical supervisors. They run us through our paces, from warm-ups to get our speech motors running all the way through to different strategies to eliminate mis-pronunciations, linking words together, adding intonations, eliminating repeats or repairs, and generally making our speech faster, more natural, more understandable.
During the six semesters I have been a student at GW, my five student-therapists read like an honor roll of accomplished and deeply committed young speech pathologists: Mary Carty from Connecticut, who’s now employed in speech rehab in a Philadelphia hospital; Justine Sherman from Philadelphia, who’s now doing speech rehab work with children in the Claremont (CA) school district; Beth Schaeffer from Kentucky, who graduated from Annapolis and then “made the switch” from U.S. Navy to speech pathology, and is now working in the speech rehab program at Mount Vernon Hospital; Nancy Perez, a Cuban-American who has returned to Miami to work with children in the Miami Baptist Hospital; Rebecca Neubert, an African-American from upstate New York who worked with me on imaginative strategies for initial “ch” words (“choice”), and medial “l” and “r” words (“hallway” and “parking”); and Cari Yowner, another student from upstate New York who’s determined to make sure that I “hit” 90-percent intelligibility in every conversation -- on bad days as well as good.
Every semester, GW has a “fresh wave” of 20 speech-pathology students coming after us to address our individual speech-communications problems, providing high-quality clinical therapies to about 100 recovering patients. In my Monday morning Stroke Group, we have a former construction “super” who has difficulty reading and retaining what he’s read but speaks like a charm, a former mail-room secretary at the Commerce Department who loves to read and speak but has trouble locating words and remembering them, and then there’s me, about whom you know far too much. The three of us kid each other about going on the road because I can locate words and read and they can speak.
What would we speak about? How certain we
are that these GW students are going to be national leaders in the speech
pathology profession. For me, they have guided me through the
continuing improvement of my speech to almost an 80-percent rate of intelligibility
(90% on a really good day.) That’s the truth – even though I’m still
having difficulty sometimes with the “tr” words, including “truth.”
But there’s hardly a call for any more words like “train-wreck.”
I’ll let the other members of the GW Stroke Group speak for themselves.
We have a GW web page, and everybody is chipping in to help stroke patients
and their families with our experiences and our advice on one of the most
ghastly experiences of our lives. Reflections too.
If you picked out this article to read thinking that you might have a stroke, and you could use any helpful advice in case you do have one, STOP! Go back three paces and think why you might suspect that you would be a good candidate for stroke.
Think about the way you live your life. Any signs of being a workaholic? Are you over-scheduled more times than not, so that time becomes a buzz- saw of hurry and worry, and time at home is just an overnight interruption of the important things you’ve got to do. Do you really like your work, or did something get off the track back there, and now it’s a string of “gotta-do’s?” How many times do you feel stress or anxiety every week? I felt it every single day, and one day it just wore me out.
You know that exercise reduces stress, but can you break away from work? Exercise also can assist you in reducing blood pressure and weight, if either of those are problems, but do you ever take time to check your pulse, weight, and blood pressure, much less have your blood drawn and checked for cholesterol? And what do you eat, drink, or smoke? When you let go of these fundamental health factors, you become a strong candidate for workaholic stress to put you down, maybe for the count. In my case, my weight and cholesterol were on the high side, I exercised erratically (mostly when suddenly trying to lose weight), and my blood pressure had a tendency to “spike up” for no apparent reason, except maybe the intersecting presence of work-related stress. Anything sound familiar here?
If your family has a history of stroke, then your risk for a stroke is a given -- and you’d better do something to adjust the basic work and health factors in your favor, or you’re just screaming for a stroke. You know my unconscionable story on that score. You certainly don’t want to repeat it.
Having been a 40-year workaholic – from 1955 high school graduation to the 1995 stroke – I know something about how hard it is to just make time to consider these sobering factors, much less take focused action on what seems to be an unlikely and far-removed threat. So, if you cannot STOP yourself from being a strong candidate for a stroke, at least you can make certain:
(1) That you and your family know what to
do in the event of stroke – the symptoms of stroke, the closest hospital
with good stroke treatment, and (above all) the ambulance service that
you can rely upon to respond within five-to-ten minutes;
(2) That you and your family select the
best health and medical insurance that your employer(s) can offer, and
you can afford, and that you have reference copies of your entire medical
policies, together with standing orders to send you all amendments as they
are issued;
(3) That you and your family think about
advance medical directives if you should go down, and codify them in some
kind of a living will;
(4) That your spouse or significant other
has complete and immediate standby authority to get to (a) family financial
resources, (b) your medical records, and (c) the historical medical records
of your blood-relation family members; and
(5) That you and your family select the
most comprehensive disability insurance that your employer(s) can offer
and that you can afford.
At least then you will be prepared if you insist
on being a strong candidate for going down with a stroke. But, of
course, after three years and counting, I know that the best preparation
is to take definitive action so you won’t go down.
So what else have I learned from all of these experiences, other than I would rather not have had them?
I have learned that I have been enormously fortunate.
I’m told that there was a moment on that first Sunday morning, when the
ER doctors and nurses had done everything they could, that less than an
hour remained in my life unless somehow the bleeding stopped in my brain.
Not only did the bleeding stop, but after all the recovery and rehabilitation
efforts spanning three years, almost all of my receptive and expressive
senses have returned to me. When I walk around the GW campus, nobody
knows I had a stroke – except when someone stops me to ask for directions.
I have learned that, after suffering a stroke,
life can never be the same again. But if the injuries are not too severe,
it can be a second chance to build a new life -- perhaps better than the
first one that you are forced to give up.
I have finally learned the importance of family. As distracted a workaholic as I was for years and years, I just didn’t deserve the outpouring of love and support and (especially) health-care survival skills from "fam.comm." But I’m going to take it, with exceeding thanks, and try to live up to it in this new life.
The stroke, and everything that’s happened since then, has taught me the importance and the value of patience. In the hospitals, in the therapies, and at home, it’s the value that steels the courage to go on. Impatience leads to frustration and the two of those emotions simply upset things, especially progress in overcoming. And in this new life, as Darlene Williamson says, "maintenance is progress."
In a workaholic world, I have learned respect for "ordinary people." Like ambulance and ambulatory care drivers, janitors (renamed "maintenance engineers") who day-after-day clean out the Speech Center in Funger Hall, and the cooks at B&J Chinese Deli, who for the life of them cannot understand me, and we laugh about it all the time.
I didn’t recognize it at the time, and I fought it every inch of the way, but in one blinding instant when I was stricken by stroke, I suddenly joined the ranks of the “ordinary” people. Right then, all of my workaholic influence and referential power, and three-quarters of my earning power, were instantly drained away. And you know what? I certainly would not have chosen the route, but I kind of like being here, where there are more real people. We make our own brand of very human respect, helping and being kind to each other. Being a power person is like a bad dream for me now. When a workaholic swings out into the fast lane on the Beltway and starts tailgating to push me out of the way, I’m only too happy to oblige. But I do feel concern and sorrow for him – or, increasing, her.
Not that I am passive, because I certainly have learned from hard experience that you have to be aggressive about your own recovery and rehabilitation from a life-threatening illness such as stroke. Know as much as you can, and then force the circle of health-care professionals to think and act creatively with you to achieve the desired results. Otherwise, they will just do your treatment "by the book," and unfortunately, the insurance companies wrote the book.
I have learned that, if you have the opportunity to select carefully, the circle of health-care professionals in the Washington DC area is one to which you can entrust your care for a life-threatening illness such as stroke, and that the health-care delivery system is NOT a mess.
And, finally, I have learned that, among all the
Washington health-care providers, it’s very nice to have GW on your side
– the real people like the Mike Curzans, the Bryan Arlings, and the Darlene
Williamsons of the GW world who are enormous and tangible human assets
that make all the difference right by your side – when you are trying to
hold your own against a long-term medical condition that’s a never-ending
mystery such as stroke.
On a Sunday afternoon not long ago, I found myself sitting in the MCI Center watching an WNBA game when I suddenly was beset by an involuntary trembling in my right cheek and jaw. I’ve had these episodes before, and so I slowly made my way to the First Aid Station behind Section 109 in case I should lose consciousness (you have to know where these facilities are when you’re a recovering stroke patient). When I got there, the trembling had advanced from my face to my right arm, producing a numbness in my right hand. But I could walk and I could speak (intelligibly), and there was no pain in my head or my chest.
A gentle man – EMS Lieutenant Henry Lyles, 25 years with the DC Fire Department – got me to lie down, quickly affixed the three leads to the EKG machine, and took my blood pressure. With no observable symptoms and no apparent cause, my blood pressure had "spiked up" to 170 over 100, when normal is 120 over 80. Right then and there, Henry wanted to "take a ride" to the hospital that has a contract with the MCI, but I refused. I explained that "my doctor" was Bryan Arling, and if I was going to "take a ride," it was going to be to GW Medical Center. When Henry took my blood pressure again ten minutes later, it had escalated to 190 over 130, whereupon another gentle man -- Firefighter Paramedic Robert Powell, 30 years with the DC Fire Department -- inserted the I.V. in my good left arm (in case they had to use it in the ambulance), and we were taking a ride all right – but to GW Hospital.
By the time my ambulance got there, the attending ER physician, Dr Lucas, had already been on the telephone with Dr. Arling. He "knew my case" and he knew what to do -- and not to do -- to guard against seizure and (God forbid!) another stroke. I arrived at 5:00 PM and I was out of there by 8:00 PM. No insistence that I stay there overnight for observation, occupying a hospital bed, or MRI tests. Just oxygen, EKG, constant blood pressure readings, and (above all), 4th floor lab work to assess whether my Tegrotol reading had fallen out of therapeutic range. It turned out that my liver had become accustomed to this medication after 2½ years, and had learned how to "gobble it up." So it was going to take marginally more of it – i.e., 700 mg vs. 600 mg a day -- to keep within the therapeutic range. Dr. Arling signed off by telephone, and that was it. Just another day in the life of a recovering stroke patient, with good doctors and a good hospital responding with responsible and well-informed care.
Brad and his girlfriend Jill had arrived at the game late, but they intercepted me at the MCI First Aid Station and the old fam.comm swung back into action – supplying information about my condition and gently but firmly backstopping me on my refusal to go to any other hospital but GW, contacting Paula so that she could gather up my medications and the "Dr. Arling" file and meet us at GW, Brad going to get my car (where my medical insurance cards were), and driving it over to GW, and Jill riding in the ambulance with Henry, "Bobby," and me. Afterward, we celebrated a rare Mystics victory as much as we celebrated my blood pressure coming down to 135 over 85 and holding, with no further evidence of either seizure or stroke. Maintenance really is progress!
But all of us knew that it might have been more serious if my resistance had frayed and I had eaten one of those magnificent foot-long hot dogs at the top of Section 110, with perhaps 110-percent of my allowable daily sodium (salt). And of course, I take ketchup and mayonnaise on my hot dogs, and there’s no telling how much that would have added to the severity of this episode. You can’t be too careful when you’re a recovering stroke patient, because you never know if or when stroke is going to strike again. That’s the way it is, and once you adjust and fortify yourself against it, you can get on with life.
Dr. Arling and I were in touch on Monday, faxing reports to one another and talking by phone at the end of the day. When I told him that my blood pressure had crept back up to 150 over 95, we agreed that Paula and I would come into his office on Tuesday, where we worked out a strategy to get the blood pressure back under control through a renewed program of exercise and weight loss, in preference to another new medication.
When I told him about recent incidences of breaking out into "head sweats," particularly at night, he reassured us both that these were perfectly consistent with low-level seizure activity and neurological electrical discharge, and further evidence that the brain was healing. He also took the opportunity to reassure us that I was in no particular danger of going to sleep and not waking up again – which is every recovering stroke patient’s worst nightmare.
Meanwhile, in early-September, GW was part of 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, “Our Love Is Here To Stay” for fam.comm and most of all Paula.
Days later, I went back to "speech school" at GW, commencing each week with the Monday morning group. It always gives me hope.
So if you ever want to see what higher education
is really all about at The George Washington University, drop around to
the 4th floor of Funger Hall on Monday mornings and observe the GW Stroke
Group. Then you will see, and perhaps know, exactly why I’m so grateful
to have GW on my side.
Copyrighted by JOHN D. PHILLIPS. Questions
or requests for copying or citation from this internet GW Stroke Group
article should be transmitted in advance to the author at any of three
pathways: Mailing Address: 1012 Gelston Circle, McLean VA 22102;
Fax: 703/760-0855; or e-mail: jdphemg@aol.com