Chapter I—The Beginning

Strokes happen

Lessons Learned

Learn about stroke, preferably in advance.

There are two types of strokes. The first occurs when the blood supply to part of the brain is suddenly interrupted by a blood clot; the second, when a blood vessel in the brain bursts, pouring blood into the spaces surrounding brain cells. Symptoms are similar and appear suddenly. Often more than one symptom can be present at the same time.

The most important risk factors for stroke are hypertension, heart disease, diabetes, and smoking. Men statistically have a higher risk for stroke and at younger ages than women.

Recognize the first signs of stroke.

·   Numbness or paralysis in the face, arm or leg, commonly on one side of the body

·   Loss of vision

·   Loss or slurring of speech

·   Sudden severe headache

·   Balance or coordination problem

·   Dizziness

·   Loss of consciousness.

Seek medical help immediately.

It is imperative if you experience red-flag symptoms that you call 911 immediately. TPA,[1] the injection that breaks up blood clots, can minimize the risk of subsequent stroke-related paralysis or death if activated within the first three hours. Beyond that limited window, the medication can have a harmful effect and precipitate massive bleeding in the brain.

Fewer than 15 % of stroke victims recognize initial signs of their stroke and seek treatment within three hours.[2] Fewer still, below 7 % of stroke patients admitted to the hospital, receive clot-busting drugs.[3] Most people in similar circumstances as my husband go to bed hoping that sleep alone will improve their situation. Even though confused about the seriousness of the symptoms, you must get to a hospital while these drugs can be effective.

Don’t count on a 3–4 hour margin for action.

Don’t believe, as I did, that you have a protective window of three to four hours to seek help. Medical authorities have recently revised this directive downward. Also you must allow for precious time that can often be lost in the emergency room registering and awaiting help.

Carry a cell phone and prepaid telephone card.

Even if used only for emergencies, be sure you add vital medical and family phone numbers to the speed dial, keep your cell phone well charged, and carry it at all times. We wasted unnecessary time stopping at home to call our physician because I had neither his phone number nor a phone readily available. A prepaid telephone card comes in handy in healthcare institutions where you must turn off the cell phone. Faster and less expensive for long distance, collect, or bill to a third number calls, it is also a good gift to ask others to bring to you once you are already in the hospital.

Alert family members and/or friends as soon as possible.

It is devastating to be alone during times of crisis. The support of family and friends can be comforting during long periods as you await results from medical and surgical procedures. Pragmatically, you may also need to call upon the medical expertise or advocacy of someone close to you who can translate medical terms and advise about the risks of recommended procedures.

Invite collective prayer.

Collective prayer builds strength, creates great energy, and can move mountains. I have become a believer in the power of collective prayer.

Remain as an advocate by the side of your loved one.

Emergency rooms and hospitals, whether large or small, are busy, impersonal, even frightening institutions. No one on staff has time to pay as close attention as you can. Trust your instincts and spot problems early. Don’t hesitate to call for help when necessary.

Keep a notebook.

Date and write down all medical explanations, instructions, observations, and areas of confusion or concern. If you or other family members monitor the patient in shifts, your notes will be available to the next and allows them to add their comments. The notebook provides a key and well-organized tool for subsequent reference.

Dear Family and Friends,

Herb had a stroke on Saturday morning in Canada. I rushed him to The Cleveland Clinic where things have not been good. Last night neurosurgeons broke up blockages in two arteries in his brain. The good news is that he is alive. The rest…we’ll take one day at a time. Please keep your fingers crossed and pray, contemplate, or hope…to help things along. We need your thoughts.

Berenice

In retrospect, nothing seemed terribly amiss.

We were in at the Shaw Festival at Niagara-on-the-Lake, in Ontario, Canada, staying at a favorite bed & breakfast. The previous evening, we had seen a play at the Royal George Theatre whose title will be forever lost from my memory. After chatting at the front of the theatre with a couple from Cleveland, we walked to our car and Herb drove the half mile or less to the B&B.

Yes, Herb stumbled down the front steps of the theatre but we attributed that to a degenerative neuromuscular condition that he has lived with for many years called Charcot-Marie-Tooth (CMT). We already knew that he could eventually require a cane or walker. My husband had purposely left his custom-fitted braces at home because he felt too embarrassed to wear them.

As theatre buffs, we had been coming to the Festival for many years. In a three-day weekend we often managed to pack in six and sometimes seven plays.

Conversation walking to the car was minimal. Herb said a few things but the evening breeze muffled his words. Rather than make an issue and ask him to repeat, I let it roll by. Herb has never been an immediate post-performance critic. His thoughts often gel for a day or more. Later in our bedroom I fell asleep reading while he watched TV.

I felt that something was a little off. My left leg dragged as we walked from the theater to the car. I thought it just a passing irregularity that would come and go. I was used to learning to live with these abnormalities. I just let it go and didn’t say anything.

Saturday morning was also not unusual. I rose early, dressed, and raced out for my favorite jog around the Major Butler burial field, a reminder of the War of 1812 when Canada and the U.S. did not practice a good neighbor policy. I was back in our room not more than thirty minutes later.

The Signs

Herb was in the shower and I remember thinking he was taking an awfully long time. My husband eagerly anticipated the B&B breakfasts, meeting guests from around the world, discussing plays, travels, and world events over cereal, rolls, and coffee. Impatient, he often went ahead of me.

As he was toweling off, Herb said something. I remember halting in mid-thought as I replayed his comments and thought, “Oh, my God, he’s slurring his words!” As Herb repeated the phrase his words were still incomprehensible. The situation was suddenly and most awfully clear. I sat him down, told him I thought he was having a stroke and asked him to remain still. Then I ran upstairs to the dining room where people were seated, asking—begging—everyone there for aspirin. Tucked away in the back of my mind was something I had read about taking full strength aspirin immediately after detecting symptoms of a heart attack. I thought it might work here, too.

People at the table seemed painfully slow on the uptake. I vividly recall their puzzled expressions at the sight of this rude, sweaty American woman bursting into their conversation. Mary, the B&B owner, calmly directed me to a convenience store just a short drive from her home.

Jumping into the car, I pulled out, found the store, but had to wait behind a half dozen people paying for their Sunday newspapers and leisurely passing the time with the storekeeper. The wait was interminable. I wondered how I might shake the rafters and push ahead but decided to wait my turn.

Racing back with bottle in hand, I popped two full strength aspirin into Herb’s mouth, packed up quickly, paid Mary, and threw our suitcases into the trunk before heading out the door with Herb. Although he had no other symptoms, including headache or paralysis, he followed meekly. That he didn’t protest forgoing matinee tickets for that afternoon was by itself worrisome and uncharacteristic. That play, too, is stricken from my memory.

Although I did not feel very sick, I decided to let Berenice take over the details of getting home. Normally we would share the drive home, she driving two hours or so then passing the wheel to me. I was not ill or out of sorts, but I let her make all the decisions.

Some have asked me, including our children, how I knew so clearly that Herb was having a stroke. Perhaps it might help to explain that I had been watching, almost waiting for overt signs to emerge.

During a rigorous trip to France four years before, both of us had become ill during the long car drive south from Paris to Avignon. I developed viral pneumonia. Herb experienced temporary facial paralysis and the beginnings of left arm pain that would haunt him for years afterward.

Medical tests and a full workup at The Cleveland Clinic immediately upon our return failed to detect any signs of stroke or problem other than viral-based Bell’s palsy, which causes temporary facial paralysis. But still I worried and watched for mental and physical slowing. I remained vigilant but unable to force the issue medically.

The Bell’s Palsy incident stayed with me. It would resurface when I was cutting the lawn. Our mower was the type that required a sharp pull of the cord—very sharp. I did this with the right hand, yet the pain came to my left shoulder. It happened every time I started the mower. I conveyed this to my internist at the Clinic, but there was never a reasonable explanation given.

Racing Home

Once in the car I explained to Herb that we had two choices. We could go immediately to the nearby community hospital or take our chances and race home to The Cleveland Clinic, ordinarily a 3-1/2 hour trip but sometimes longer with returning traffic. While only a few minutes away from the small hospital, I questioned whether they would have the clot busting tPA injection available or the skilled staff to properly administer it. I had read that we had only a 3–4 hour window for this medication to open blocked areas and restore critical blood flow to the brain.

Having watched my mother die in a community hospital, I feared the local facility could become a dead end. Concerns that remaining in Canada would make medical choices and subsequent commuting difficult compounded our situation.

On the other hand, if I could make it home in three hours, the full resources and medical knowledge of The Cleveland Clinic, a major tertiary care center ranked as one of the top hospitals in the United States, would be available to us. In case we met a tie-up on the Peace Bridge, I was prepared to head either to the Buffalo Hospital or request a motorcycle escort at customs. Herb concurred.

We didn’t make much conversation along the way, only enough to assure me that Herb was still functioning and alert. Had there been any change, or heightened urgency, I was prepared to stop. For the first time in my life I kept hoping my lead foot would prompt the whirling red lights so that we could move even faster.

I vaguely knew the location of the much closer Fort Erie Hospital along the Queen Elizabeth Way (QEW). But I kept telling myself that if I could make it over the border, the Buffalo hospital would be larger. Fortunately, the highways were fairly empty and we decided to go all the way.

Now only a few miles from The Cleveland Clinic, Herb insisted that we stop first at home to call our internist Dr. Michael Felver and ask him to meet us at the emergency room. While I was on the computer pulling up phone numbers from my medical directory, Herb got out of the car, carried in luggage, opened windows, and inadvertently let the cat out. Unable to reach Michael, I phoned the triage nurse who told me to contact 911 immediately. I asked whether to give him more aspirin but she cautioned me not to.

Emergency Medical Service (EMS) seemed a little dramatic after our hurried drive and might require too much of a wait. We piled back into the car. Driving turned out to be fortuitous because we learned later that The Clinic’s Emergency Room was full and had issued a blue alert diverting all emergency vehicles to other hospitals.

How I wish I had given Herb more aspirin. Or at least carried the bottle with us to give to him later. I never realized how much time would pass waiting for help in a medical facility.

The gravity of the situation had still not swept me up in fear. I was succumbing to my wife’s over-reaction, docilely following her in this adventure. Little did I know what lay in front of us!

The Emergency Room Wait

Herb would not let me drop him at the double doors of the Emergency Room and put him into a wheelchair before parking. He insisted on walking in with me. Just in front of the swinging double doors, his legs buckled and he fell on the sidewalk, scraping his knees and drawing blood.

Suddenly police and attendants came rushing up with a wheelchair and whisked us through triage to emergency intake. I assume they based their action not on the stroke but on Herb’s bleeding knees. Once ushered into a side room our good luck ended. Medical friends had previously cautioned me not to get sick the second week in July when new resident teams begin and staffs rotate. But a stroke doesn’t choose an opportune time and now we found ourselves in the midst of both situations.

Registration took almost thirty minutes. It was already 12:30 p.m., and our four-hour window was closing when someone with a clipboard asked us when the stroke had begun. I told him 9 a.m. that morning. Herb said the night before. I argued but that was it. No anti-clotting injection. I later learned that with the wrong timing tPA could cause cerebral hemorrhaging. Instead we remained in the hallway for hours before an aide took him for a CAT scan. Time apparently was no longer critical.

Finally placed in a small room with a blaring television set, Herb lay there on a cot without further medical support or food until around 8 p.m. when the hospital cleared a bed and prepared to transfer him. It was disappointing to realize that the “just in time” concept prevails in medicine as well as manufacturing. We were just beginning our first meal of the day, a McDonald’s carryout that I’d fetched from an adjacent building, when word came that the bed was ready. That sounds like we were fairly calm, doesn’t it? Through the entire white- knuckle drive and up to and including the emergency room, I’d made inane conversation with Herb trying to keep his thoughts focused while I tested and retested his cognitive responses. All the while as I sat in the cubicle waiting endlessly, my fingernails dug into the palms of each hand, drawing blood.

In-Hospital Care

I remained at Herb’s bedside in a small semi-private room, sitting upright in a chair all night wrapped in a large sheet provided by a kind nurse. Early the next morning, the neurologist told us that Herb had suffered a small stroke situated in “a prime area of real estate” on the left side of his cerebrum. If conditions remained constant, he stood a good chance for recovery without much damage. That was the last positive news we heard for a very long time.

Nothing happened that Sunday morning. No nurse or resident checked in to monitor Herb. Care was custodial. Herb could walk to the bathroom, feed himself, and read the newspapers. He could also carry on a full conversation. But it became obvious to me, especially by early afternoon, something was wrong. Increased sluggishness and decreased movement to my untrained eye indicated that his condition was deteriorating. A visiting medical friend suggested that I go to the nurses’ station and firmly state that I had concerns and wished to speak with the senior resident.

It took an hour for the resident to come to our room. When I explained the situation things began to happen. Attendants immediately transferred Herb to the neurological intensive-care unit. The hospital paged an MRI[4] technician on her night off and slotted the procedure for that same evening. Again staying overnight, this time in a reclining chair with pillow and blanket, I monitored Herb’s movements and breathing while awaiting the neurological report the next morning.

At 7:30 a.m. Monday, the neurologist came walking into the unit surrounded by a gaggle of half a dozen young residents. He spoke quickly to them in highly technical medical terms. I forced myself to take written notes on the back of some available hospital information papers. Apparently, the stroke was spreading. He discussed various procedures to stabilize Herb’s condition, beginning with the most conservative and extending step-by-step to more invasive and riskier procedures.

The first step he said was to immediately force Herb’s blood pressure up to the stratosphere. Increased blood flow, precipitated by medication, could possibly open blocked arteries in Herb’s brain. I meekly concurred, recognizing I lacked the expertise to question his recommendation.

Within minutes nurses hooked Herb to a blinking heart monitor. He was alert and to pass the time I read him several articles and editorials from the local newspaper. After he’d eaten an ample lunch, he raised his right arm, stretched, and said he would like to take a nap.

Lulled into a false security, I took this opportunity to quickly run home to shower, and grab some clothes and my own medications I’d not taken for the previous three days. I checked that neighbors and friends were continuing to care for our dog and cat and then returned to the hospital. Our daughter Kathryn had just arrived from Northern Virginia.

Herb looked as though he were still asleep. A machine monitoring his blood pressure beeped away yet I could see that something was very wrong. He didn’t respond when I tried to wake him. His eyes opened but he was more lethargic than one hour before and had no right arm or leg movement. Apparently nurses had not noted this change so I called for our neurologist. Dr. Kerry Levin responded to the page and agreed that Herb’s stroke was worsening.

More nuclear brain tests, more trips to the labyrinthine basement so cold and intimidating that shivers ran up and down my arms and shoulders as I followed after the attendant. I insisted on accompanying Herb in his rollaway cot to these tests ostensibly because I didn’t want him to wait by himself, helpless and alone, in long queues I had previously seen. After the guilt experienced from leaving him alone during my brief trip home, there was no way I was going to let my husband out of my sight again. It seemed emphatically clear that if I could hold his attention he couldn’t slip away and die. Mostly, I read, held his hand, and forced limited one-way conversation.

Attendants eventually moved my husband through impassable double doors for his tests and told me to wait. Only as I sat huddled by myself in a corner, my first time truly alone in this nightmare, did thoughts drift to the “what if my husband died…” scenario. Until now I had urged family members to not to come, assuring them in my calmest voice that Herb was in excellent hands and that we had reason for hope. But time seemed to be seeping out and the consequences were stark.

Outwardly stoic throughout the previous three days and nights as I focused on what had to be done, I could now feel my resolve crumbling. Blood pounded against my temples. I rubbed my eyes to try to hold back a throbbing headache just settling in behind them. To keep from screaming I clamped both hands over my mouth and stared fixedly at a small crack in the ceiling, willing back my self-discipline and control. 

I desperately wanted to tear myself away from this place and this reality, and return to the way our life was before. Why, God…Why us? But if that was not possible, couldn’t I just dissolve into a little puff of cottonwood and drift some place far away where there were mountains and ocean, flowers, sunshine, and calm? Far away from here.

But there was no turning back the clock, no floating away, no escape from this impersonal dungeon of a basement filled with blaring television and frightened patients on cots and hardback chairs silently awaiting their own destinies.

Bleak reality it was with more to come. The devastating results showed more clots and new blockages. Preparing us, Dr. Levin said that we might now have to consider angioplasty. He explained that the surgeon would first make an incision in the groin then thread a device up through an artery into the neck and brain to open constricted areas. Next he would insert small wire chutes called stents, vaguely resembling little mesh tunnels, to hold open these areas indefinitely.

This invasive procedure was risky but he hoped it would not be necessary. We had time to make that decision, he said because Herb’s elevated blood pressure might still push open these clogged areas less intrusively. He provided his cell phone number and kindly agreed to take a call from our niece, Anne Kleiman, a neurologist in New York City. Anne responded quickly, talked with Dr. Levin and then with us. She translated medical terms, clarified the pros and cons of our remaining options, and advised us that should the situation worsen few alternatives remained other than angioplasty.

Worsen it did very quickly. Recognizing the gravity of Herb’s condition I placed several long distance calls using a telephone card that by chance I carried in my wallet. I called both our son Steve, in Los Angeles, and Herb’s brother, in New York City, telling them to come immediately. Our window was closing much faster than I or anyone else had anticipated.

In the recesses of my mind, I kept thinking that this alert was premature. Herb was too young…I was too young…I didn’t want to be a widow. I desperately hoped that when I awoke from this horrible dream we would both be back at the Shaw Festival just as we were before. Please, God, please God, let me wake up! Make this all a terrible mistake!

My last call at Herb’s bedside was to our younger and very pregnant daughter, Miriam, who had a ruptured relationship with her father and had not spoken with him for a number of years. I’d talked with Miriam previously and asked whether she would take a call if we came down to last minutes. I did not want Herb to die leaving her with awful regrets. She agreed. Miriam spoke briefly with Herb and, together with her husband Jason, wished him good luck. Tears ran down Herb’s eyes. Putting aside my own fears and anxieties, I hoped, if nothing else was salvaged, their exchange might help to ease Miriam’s own pain.

Kathryn, a new mother who traveled with her lactation pump, planned only a day trip but decided to delay her departure and take the last plane out that evening. Having her by my side was immeasurably reassuring. We exchanged few words but profound eye communications. Steadfast and outwardly calm in crisis like her mother, she became my rock, advisor, and friend.

Another bad turn and we were suddenly face to face with the last of our options. Anne was back on the phone more urgently explaining that, although the stent procedure offered a long shot to limit the ultimate extent of the spreading stroke, the Clinic was at the forefront of this new technology and it was worth the risk. Herb was conscious. I again placed the receiver by his ear. He listened to Anne and agreed.

Attendants rushed his hospital bed down the hall to the elevator. In the brief lull by the elevator, I kissed Herb for what I realized might be the last time. Then Kathryn and I ran for a second elevator.

During all the activity in this life-or-death struggle, I did not realize the gravity of the decisions being made on my behalf. I was somewhere between semi-wakefulness and semi-somnolence, drifting in and out.

Space-Age Technology

In the minutes it took to race to the basement operating room, Herb’s chances diminished dramatically. I thought about his living will that restricted use of exceptional life-saving methods but chose not to comply. Our mutual directives were supposed to apply to old age. This battle was immediate and I desperately wanted my husband to live.

It was now 8 p.m., still on Monday. Dr. John Perl, the gowned and ready neurovascular intervention specialist, explained he would perform angioplasty to appraise the situation. The carotid artery in the neck was now blocked and he would have to open that up first.

I asked him about Herb’s chances to survive. He hesitated, looked me in the eye, and said we were no longer discussing percentages. He explained there were times after this procedure while shaving the next morning he could stare at himself in the mirror and feel like a hero. But there were other times he didn’t want to look.

Although he had my permission, Dr. Perl said he would wake Herb up to ask his consent before proceeding. Since he did not return, I assume Herb, too, approved.

For four hours, Kathryn and I sat outside the closed doors and waited. One by one, close friends joined us: Tena Rosner who only a few months before had lost her husband Arthur; our internist, Mike Felver; Aaron Billowitz, a psychiatrist and husband of my buddy, Laurie; and Sheryl Sereda, whose teenage son Brian had been killed in an auto accident almost ten years before. Herb and I had shared good and bad times with each of them.

I had no idea how our friends found us in the complicated bowels of this huge medical facility but the group continued to grow. And we waited. We sat in a circle and held hands while we talked. I silently entreated God to return Herb to me. Please God, help him, help him! Send him back in whatever condition and I promise to take care of the rest—Just send him back!

Kathryn and friends offered amazing love and support as we waited. Finally, around midnight, the doors opened and an exhausted Dr. Perl emerged to say that Herb had survived the placement of two stents, one in the carotid artery and another buried deep in the frontal cerebrum. But there was more: blood from a third blocked artery apparently dispersed on its own through an alternate series of blood vessels. A fourth blockage, on the opposite side, was too risky to reach under current circumstances and would be closely monitored.

Fine points and complexities failed to register. I was transfixed by the thought that despite the odds, and the massiveness of his stroke, Herb was still alive. I kept muttering “Thank you, thank you, God!” as I hugged Kathryn and our friends and sent them all home.

Seeking Help from a Higher Order

In that one brief visit home, I had turned to the Internet as a communications link to our outside world. Responses to my initial e-mail entitled “Bad News” flooded in from Japan, Israel, the UK, Ireland, France, Canada, and across the United States. Friends and family from many religious backgrounds and languages prayed for Herb. Our nephew Harold in New York City stood in line to pray with a famous Hasidic rabbi. A friend in Ireland, Owen Smyth, journeyed to a rural monastery to offer his prayers for Herb’s recovery. Friends in Indiana initiated their own Jain observance.

This intense knocking on God’s gates must have been overwhelming. Although I had never before given much thought to the power of collective prayer, I do now. I have learned that prayer by many can defeat amazing odds. In Herb’s case it did.

Herb would live. We knew that. But the extent of damage was yet to be determined. My pacts with God and Herb were only beginning to unfold.