June 19, 2008

June 19, 2010

Thursday morning I woke up feeling sick and anxious. I hadn’t slept well and was having trouble doing simple tasks. My cellphone rang and it was Diana. It seems I could receive international calls but not place them. We spoke briefly. Somehow, I know Mariah has survived the night, and I can’t wait to get to her.

Enrique arrived as promised and drove us to the hospital. It was only a few minutes away. I tried to focus on the route but got disoriented.

We park across the street from the modest hospital and go in.  Up a short flight of stairs and around a corner is the locked entrance to the ICU. Several people are standing around. Enrique presses a buzzer and we join the other people waiting. A pleasant woman approaches and asks me if I am Mark. She is Gladys, my friend’s friend’s mother.

Flooded with gratitude I sense an abundance of support in Lima. Gladys, Enrique, and I talk quietly for a few minutes. Gladys is very concerned and I assure her that I will be fine in Enrique’s care. Admonishing me to call for anything, anytime, she leaves.

After an interminable quarter of an hour, the door to the ICU opens slightly and a nurse pokes her head out. Enrique identifies us and we are allowed in where we put on gowns and caps.

Barely able to contain myself, I step around the corner and at last see Mariah. I put my arms around her and she hugs me back, crying. Avoiding the tangle of tubes and wires, I hold her tightly and tell her I love her and how good it is to see her and how it’s going to be all right. We both cry.

Stepping back to look at her, I see a terrified, confused, and badly damaged young woman. My heart breaks. She speaks infrequently but clearly and so softly I have to lean closer to make out her words. “Dad, I want to go home NOW.”

Stroking her head, I said “I know, Sweetie. We’ll get you home as soon as possible.”

“I want to you stay with me.”

“I will. I promise.”

“Ok. Thanks, Dad.”

Enrique left to check in at his office which is only a block away. He said he’ll return later to take me to lunch. Someone kindly brings me a chair. I sit next Mariah and hold her hand, stroke her head and hands, and make small talk. Every few minutes she yawns a gigantic yawn. I tell her that her mighty brain is gulping oxygen to heal itself.

Alarmingly, two or three times an hour, she writhes, limbs twisting and hands and feet flexing at an impossible angle. She pulls her legs up to her chest and rolls from side to side in the bed. She strains against internal forces. After a few minutes her body suddenly  relaxes and she falls back, panting. The staff calls this “agitated”.

After one such episode, she pulls me close to her and says, “If I’m not better in four days, kill me.” Shocked, my fear surges. I’ve never known Mariah to not be up to a challenge. “Let’s see how things go, Bunny,” I reply. (Later that day when I was giving her a pep talk, I told her she had the toughest mission she had ever faced, and asked her to pour 100% into getting better for six months. She agreed, and in fact would give it 18.)

A  nurse gets my attention and indicates a telephone. I take the call. It’s Tri Care, the Army’s medical insurance carrier. They want a report which I try to give. They want to medivac Mariah back to the states ASAP. They claim the doctors in Lima don’t want her moved for several days, and they want my assessment. I agree with the docs for now but ask Tri Care to check back tomorrow for an update. They inform me I will not be able to accompany Mariah on the plane home. I cannot imagine letting Mariah out of my sight and push back. I tell them she’s terrified and begged me to stay with her, and that I promised her I would. They push back again and we let it drop.

Morning visiting hours over, Enrique returns to take me to lunch. We go first to his office where he generously makes a desk, phone and computer workstation available for the duration of my stay. Mariah’s luggage, an enormous backpack, is there as well which I’ll inspect later.

Anxious to get back to the hospital in time for afternoon visiting hours, I cut our lunch short. I stopped at the office where I pick up an email. Diana had sent me the text of “Goodnight, Moon,” one of Mariah’s favorite books from her childhood.

Back at the ICU, Doctor Prentiss, the neurologist on Mariah’s case, shows me the films of the MRI they took when she arrived at the hospital. He points out what appears to be a small, almost withered-looking artery at the base of her brain. It’s next to another vessel that is much thicker, straighter and more robust. His theory is that the narrow artery, one of a pair that feeds her brain, somehow became completely constricted or blocked, causing the stroke. He hands the large envelope of films to me with instructions to be sure they get into the hands of the docs in the states.

The afternoon is a blur of comforting Mariah, reading and singing to her, witnessing her awful spasms. I was wrenched back and forth between hope and despair. Stepping away from the bed to take a call, I noticed Mariah watching me from across the room. I made the “I love you” hand sign, and to my delight and great relief she offered one in return.

Near the end of the day, Mariah said suddenly, “Goodbye, Dad.” Confused, I asked whether she wanted me to leave. “No,” she replied. “Me.” With that, she closed her eyes and lay back on the bed. Fearing that she might be dying or willing herself to die, I stood frozen. Silently, I begged her to live. I stared at the monitors, watching the numbers and traces for a sign of decline. Minutes passed. None appeared. Score one for life.

When visiting hours ended for the day, I told Mariah I would be back first thing in the morning and that I loved her. She said “Ok, Dad. I love you, too.” That would be last time I heard her speak clearly, and the last sentence she would utter for two months.

– Mark


June 18, 2008

June 18, 2010

(I’m recording  my memories of the events of this week two years ago as therapy for myself. These thoughts and memories keep bubbling up. They distract and sometime trouble me. Maybe by taking the time to tell the story carefully and  honestly, I can feel the memories more acutely and begin moving them out of me and myself back into the flow of life.)

After a few hours of fitful sleep, I awoke to a gut-wrenching sense of dread and determination. We know the experience of waking from a dream with powerful feelings. Feelings that stick with us for hours as we slowly re-enter “reality”. That Wednesday morning the nightmare feelings were present. But there would be no re-entry to a familiar reality to help to dissipate the anxiety of the night before.

Though experienced with international travel, I was unable to focus on what lay ahead and what I might need. I checked and double checked passport, flight information, credit cards, weather in Lima, notes from phone calls the night before. I tried to not think about Mariah.

Finally at the door with bags in hand, Diana and I held each other tightly and kissed teary goodbyes. Then I stepped through the door and into a world that looked familiar but felt entirely alien, and headed for the Newtonville train station.

I tried to observe the details of the neighborhood as I walked, but I was elsewhere. Shock provided a haze that both shielded me from crippling horror and isolated me from the familiar. Shock that would be ignited again and again for at least the next two years of my life.

At the office, I hurried to tell my bosses about Mariah’s scary but mild stroke. And to reassure them that after checking on her in Peru I would join them at General Assembly in Florida. I tried to project confidence, but my shaking hands betrayed me. My friend Javier gave me the name and phone number of his friend in Lima, Gladys, with clear instructions to call her for anything.

Shoe leather to the Government Center T stop, blue line to the airport stop, shuttle bus to the terminal, plane to Newark, plane to Lima. Twelve uncomfortable, lonely, anxious hours. I tried to not think about Mariah.

At 10:00 in the evening, the terminal in Lima wasn’t crowded. A good thing as I don’t speak or read Spanish, and being exhausted from worry and travel, I needed to go slowly to get oriented.

I tried to call Diana on my cell but hadn’t thought to enable international service before leaving Boston, and instead got a recording in Spanish. After clearing customs, I exchanged the few dollars I had for Peruvian nuevo sol at a kiosk, worried it might not be enough to pay for the ride.

In spite of it being a large airport, it wasn’t hard to find the driver holding a sign with my name. Grateful, I handed my bag over and climbed aboard. Driving through the darkened streets of the city, I felt myself getting closer to Mariah. “I’m coming, Sweetie,” I muttered under my breath. Out the windows, another foreign capital flowed by, both strange and familiar.

We arrived at a modern little hotel in a residential district. The tour rep had assured me it was close to the hospital and in a reasonably safe neighborhood. The fare and tip took nearly all my cash, but I had made it. I checked in, went to my room, and after deciphering the international calling instructions, finally reached Diana.

Her voice gave me the first moment of calm since leaving home. But she had bad news. She asked whether I wanted to hear, whether I thought I could handle it. I told her I needed to know everything. During the day, the tour group rep had called and told her that Mariah was in very serious condition in the hospital’s Intensive Care Unit and was breathing with the aid of a ventilator.

Slam! I burst into tears. The hope I had allowed myself because the stroke was very mild evaporated in an instant. Shocked, I fell onto the bed. The truth was that Mariah was in mortal danger a few miles away. I feared that she would not live through the night. I wanted to go to her right then. But it was midnight, I had no money, didn’t know Spanish, didn’t know where the hospital was, and I was exhausted and sick with terror.

I called the number for the tour group rep and got the father of the young man we had been working with. He exlpained that his son had to leave town on business, and that he, the owner of the agency, would take care of me during my stay. He explained that we would not be admitted to the ICU at that hour, and he promised to pick me up early in the morning to take me to her.

Unconvinced but defeated, I agreed and thanked him. I called Diana back to update her and we shared a cry before I tried to get some sleep.

Mariah was in huge trouble, and I was inches away but unable to reach her. Thus the model of much of my life for the next two years was in  place. Hope nurtured but shattered by an endless series of shocking blows, and the nightmare of helplessly watching my girl suffer on the other side of an impenetrable barrier.

– Mark

June 17, 2008

June 17, 2010

(Strokes, if treated within an hour or so, can easily be survived. It was over six hours before Mariah was able to reach any professional medical care, and nearly two days before an accurate diagnosis would be made. Ironically, of all the medical professionals involved in the first 48 hours of her ordeal, only one suggested the correct diagnosis. Only Mariah figured out what was wrong, and she wasn’t in charge.)

Two years ago on Tuesday evening, June 17, Diana and I were in our living room in Newton, Massachusetts. We were watching the Celtics on TV as they fought in the deciding game for the 2008 NBA championship game against the Lakers.

It was late when the phone rang in the next room. Irritated at the interruption and keeping an eye on the TV,  I took the call. It was Mariah’s best friend, Suzanna Strasburg (now Fitzpatrick). Distracted, I asked what was up. Then I heard worry in her voice as she said, “I got a call from the tour group in Peru. Mariah’s had an accident.”

In the beat of a heart there was no game and no sound but Suzanna’s voice. My stomach plunged and I saw Mariah slipping from the side of the mountain. Before she could fall, I heard my quavering voice ask, “What happened?”

“Mariah had a stroke.”

Unable to make any sense of the message, my racing mind tried to fit it together with a fall. “What?” I asked, thinking, “But, but what about the fall? How could a fall..? A stroke? Mariah had a stroke?”

“She had a stroke, but it’s a very mild one. They think she’ll recover almost 100%.”

Panic made room for disbelief. Stomach churning I put my hand over the mouthpiece and looked into the living room at Diana watching the game. I gestured wildly to get her attention. When our eyes met, pleading I said, “Mariah had a stroke. She had a stroke!!”

Diana rushed to my side and handed me a pad and paper. Suzanna gave me contact info for the hospital, doctor and tour operator’s office all in Lima, Peru, as well as the phone number of the insurance company that covers Army personnel. Hand shaking, I tried to write carefully knowing this information was the only link to my poor daughter thousands of miles away.

I thanked Suzanna. She said, “They said she’ll be ok. I’m so sorry, Mark.” I didn’t know that would be  the first of thousands of expressions of sympathy over the next two years.

Making international calls always stumps me, but I finally got the dialing prefixes right. I don’t speak Spanish, and at that hour, the hospital staff didn’t speak English. The doctor wasn’t available, but the tour group representative in Peru answered and spoke English. He reiterated what Suzanna had said, that the stroke appeared to be very mild.

When the calls ended, I paced the room in shock asking over and over, “How could this happen? She’s a kid. A stroke?”

Diana was back on the sofa with her laptop, looking up flights to Lima. She called Continental and explained the situation. The sympathetic ticket agent offered a reduced emergency fare, about $800, for a flight the next morning. “When do you think you’re going to come back?” Diana asked me.

I couldn’t focus, couldn’t find an answer to the question. Somehow I  recalled a flight to Florida the next Sunday for my work’s annual meeting. “Sunday,” I said.

With flight arrangements connecting through New Jersey and arriving in Lima late Wednesday night, I called the tour group rep back. He said he’d have a driver at the airport in Lima and would make reservations at a hotel near the hospital for me. He said the hospital ICU would be closed at that hour, but offered to pick me up at the hotel early Thursday morning to accompany me to where Mariah was being cared for.

Shaking and numb, I thanked him and rang off. Still unable to focus, the idea of packing for an emergency international flight was completely beyond me. Diana helped me upstairs where I moved slowly, robot-like in a daze of terror and disbelief to pack for the next day’s journey. I tried but couldn’t even imagine what might lay ahead.

– Mark

June 15, 2008

June 15, 2010

Too late! The clock is chiming 6:00 pm, and now it’s too late.

I kept thinking I could, but I couldn’t. All day I watched the time, kept trying to figure out a way. I tried. I tried to reach her to tell her to skip the hike. I tried to tell her to not go up the mountain. To stay safely at home and away from Peru. I tried to warn her about her awful headache, and the altitude, and the narrowed vertebral artery in her neck, and the birth control hormones in her body; about all the risk factors, but she couldn’t hear me. Didn’t get the message. Now it’s too late; I’ll never be able to save her.

That’s a father’s first job, to protect their children. It’s a primal, physical job. Teach them about danger, then keep it at bay. If it gets too close anyway, destroy it or grab the children and flee. But keep the children safe.

Now it’s too late. The clock is striking 6 and the stroke is beginning, a change in a blood vessel near the base of her brain. The blood has been struggling to pass through the constricted artery for some time, but now for reasons that will never be explained, it’s blocked altogether. Lacking precious oxygen, the cells of her mighty brain begin to die. First one, then many in the tightly packed bundle that enters the base of her brain from the thousand tributaries branching throughout her body.

Defeated, she collapses on the bed. It’s about 6:00 pm on June 15, 2008. It’s Father’s Day.

I need to get as close as possible to her confusion, her pain and terror. I need to be with her as her vision blurred, words escaped her, and her sense of touch slipped away. I can’t do that yet, but one day I will. No one could save her, but I can remember and feel what she felt.

The story of her experience on the mountain in Peru as told by her traveling companion, Molly Harrington, is recorded elsewhere in this blog. Over the next several days, I’ll recall here what happened from the moment I received the horrible news in Boston until Mariah was medevaced from Lima, Peru to Washington, DC.

– Mark

“Each day, every tiny victory mattered.”
– Janet Hayes, UUA colleague.