Several months ago I asked my friend, the author Robert Hughes, how he deals with writer’s block, which had been plaguing me for months.
He suggested that I force myself to write for an hour every day, to fill the page with anything that came to mind. Through the discipline of doing so, something would eventually click, and I’d find my way.
I’d just begun to follow his advice when I got sick. Really sick. And while I wasn’t conscious for the worst of it, I’m told I was critical for a number of days. There was a very real possibility that I wouldn’t make it.
In the hospital for over two weeks, I’m still recuperating, gradually regaining my strength. This isn’t the story I’d been struggling for months to express; I’m so rusty I’m not even sure I can still write at all. But this is a story I need to tell.
*****
It came on suddenly, with a moderate fever I thought signaled a recurrence of the flu I’d suffered in February. A flu swab test proved negative, however, and with no cough, no vomiting, and my lungs sounding clear, my doctor believed it was a virus that would run its course.
Two days later I could barely stand, and with my husband at work that Sunday, I called 911 for the first time in my life.
I remember very little about my stay at Highland Park Hospital, where I was quickly transferred to the intensive care unit. Snatches of that experience are all I have: an oxygen mask placed over my face; my husband, Andy, stroking my hand; his quiet conference with the doctor across the room. Later I learned that my breathing had been alarmingly labored, my heart rate accelerating in time with my fever as it spiked to over 104.
Early Tuesday morning, my respiration still unregulated, intubation was deemed necessary, to, as the nurses told Andy, “give my lungs a chance to heal.” Drugs to calm me as the breathing tube was inserted were only marginally successful; apparently I fought the procedure bitterly, struggling against the restraints at my wrists, unable to relax despite powerful sedating drugs, like propofol, and the painkiller fentanyl, coursing through my system.
My condition remained unchanged for two and a half days. As explained to me later, I was taking 60 to 70 breaths per minute, when 12 is normal; my heart rate should have been between 55 and 62, but was consistently over 120, surging to 140 when my fever soared. Most worrisome, my carbon dioxide level had risen to 99, when the high end of normal is 45.
Even with the ventilator and massive antibiotics, begun intravenously when I first arrived at the hospital, I was not improving. In fact, I was steadily getting worse.
What had at first appeared to be a bad flu or perhaps a simple pneumonia was proving much more serious. The nurses had, in fact, initially told Andy that I probably did have the flu, that oral swabs like the one my internist had taken in her office were often inaccurate. He wanted desperately to believe this, that with rest and antibiotics I’d be home in a few days.
His faith was shaken, though, when he realized that even in my delirium I sensed how sick I was, telling him on Monday evening — although I have no memory of doing so — that I didn’t think I’d get better.
By Wednesday they’d moved from referring to my sedation as “twilight” to “paralytic,” anything, it seemed, to avoid the term “medically-induced coma.” But that was the truth of my condition.
*****
My daughter Natalie came to the hospital every day from her home in the city, hovering at my bedside in the ICU, joined by my husband between stints at his office. Friends and co-workers came, too, murmuring words of encouragement to my unconscious form, sitting with Natalie in the waiting room, asking questions of the medical staff. As hours and then days passed, though, the mood shifted from concern to palpable alarm. They didn’t even know what precisely they were fighting; the results of a culture to determine what bacteria had attacked my system had not yet come back.
Then, mid-morning on Thursday, five days since my admission, my attending physician found Natalie in the ICU waiting room. Preparing to call Andy, he instead wasted no time in addressing the next legal authority listed on my intake form.
“Your mom is very ill,” the doctor said, taking a seat beside her. “We need to move her to Evanston,” he went on, referring to a larger, teaching hospital about 40 minutes away. “And we need to do it right now.”
Days later, I learned that he anticipated a “last resort” treatment called an extracorporeal membrane oxygenation, or ECMO, which would essentially bypass my lungs, and use a pump to circulate blood through an artificial lung back into my bloodstream. It was a procedure my local hospital was unequipped to perform, and the window of opportunity was narrowing fast; they feared I may soon be too unstable to move.
“We need your permission to transfer her,” the doctor stated. “But there are substantial risks in moving her.”
Stunned, Natalie stared at him for a moment, then asked, “What are the risks?”
The doctor spared nothing in his response.
“She may not make it to Evanston. She may stop breathing in the ambulance, and we’ll be unable to revive her.”
I will forever regret that my daughter had to hear those words, to endure that trauma, and assume a responsibility so grave. No child, even a 28-year-old adult, should have to. I have envisioned that moment countless times since, and the horror of it has not diminished.
My daughter is remarkable, though, strong and resilient, and immediately gave the necessary consent. Fortuitously, my close friend Marla arrived minutes later, embracing Natalie as she related the latest news. By the time Andy reached Highland Park soon after, his 90-year-old mother had also arrived, and was holding Nat’s hand as they both cried softly, my mother-in-law’s tears allowing her granddaughter to finally shed her own.
It took three agonizing hours for the medical staff to prepare for my transfer, disconnecting me from numerous IV lines, alarms and monitors. Apparently my condition was so tenuous that even the shift from hospital bed to ambulance gurney was dicey. Finally, though, I was on my cautious way: no lights, no sirens, the risk of an accident with such fragile cargo outweighing the urgency of transporting me quickly.
A fierce band of friends and family converged on Evanston Hospital as word of my move spread, via calls, texts and voice mails. Marla followed from Highland Park, where she’d spent part of every day that week, as had my friend and co-worker, Janice. Natalie’s dad and step-mom, Jeff and Mary, dropped everything and drove from Wisconsin to lend their support. Darren, my soon-to-be son-in-law, grabbed an Uber and rushed to Evanston, joining a vigil no one could have anticipated just days earlier.
And they waited.
Relieved and elated when I survived the trip, they now hoped to avoid the ECMO procedure, an invasive surgery offering no guarantee of success.
Nearing 7 p.m., a resident delivered the first piece of good news in days: my carbon dioxide level had dropped to 70, based on the blood draw taken upon my arrival. By the time Andy left for home at 11 o’clock that evening, it had dropped further, to 53 on two separate draws. The ECMO procedure was no longer indicated.
For the first time since Sunday I had started to improve.
******
I remained in an induced coma for four more days, to allow me to heal and the antibiotics to work on what they now knew was the Legionella bacteria, which had caused massive pneumonia in both my lungs. I’m told we’ll probably never know how I contracted such a rare, waterborne bacteria, most famous for the dozens of illnesses and two deaths it caused at the American Legion convention in Philadelphia in 1976. While the serious flu I’d suffered a month and a half earlier had probably weakened my immune system, my county’s department of public health agent conceded that the origin of Legionella infection often remains unknown.
What everyone agreed on, however, is that it quite possibly could have killed me.
Nine days after my initial call for paramedics, Andy and Natalie were called to the hospital to provide familiar faces as they pulled me from the coma. Unfortunately, I’d spent the week I’d been sedated in a maze of discordant, menacing hallucinations, which I still vividly recall when I allow myself to remember. I woke confused, sullen, in pain, believing my husband and daughter had conspired to trap me in that frightening netherworld, that they were somehow responsible for a ghastly experience I didn’t understand. Learning that this reaction is not uncommon doesn’t fully alleviate my shame at the initial distrust and anger I felt toward two of the people who love me most.
I was forgiven, though. It took days for me to fully appreciate the impact my illness had had on those who love me, how close they came to losing me. As awful as those first days of recovery were, I had missed the worst of it. Seeing my face in a mirror several days after I awoke, I hardly recognized myself: gaunt, haunted, my hands too weak to hold a cup of water. I’d lost 16 pounds, and couldn’t walk unassisted for nearly a week. When I came home after 15 days, including three in the rehab unit, I needed a caregiver for several days. Soon, though, I felt strong enough to navigate my home, albeit slowly, on my own during the daytime hours while Andy was at work. Almost immediately I began physical therapy to reclaim the muscle tone I’d lost, and have gradually found my strength. Three months later I still tire quickly, and am working abbreviated days for now. It will take six months or more, my internist warns, to truly feel whole again.
*****
I’d love to report that this ordeal was life-altering, a revelatory event of directional clarity, elevating me to a place of serenity and gratitude. And I am grateful. Of course I am. It still stuns me that I actually could have died, that Legionnaires’ disease can easily be fatal.
But Hallmark moments don’t often happen in real life, in my life, at least. Or perhaps I’m too jaded now to appreciate them. My friends know I’m not a fan of platitudes, to which all special needs parents are subjected, again and again. “Everything happens for a reason,” or “There are no mistakes in God’s world” come distastefully to mind. Yet one of the cards Mary sent brought me to tears with its profound simplicity, precisely what I needed then to hear: “Breathe in. Breathe out. Repeat.”
In these weeks of recuperation I’ve come to understand a few things. I’ve been a caregiver for years, imperfectly, stumbling, but with my son’s profound needs ever-weighing on my soul. I recognize now that I’ve never truly learned to “self-care,” as we women are instructed to do. How easily I’ve become mired again in minutia, the worry and entanglements that are part and parcel of life. I haven’t even been consistent in writing an hour a day.
Sometimes I long for those first, tremulous weeks back home, safely cocooned in the blanket of recovery, my weaknesses indulged, nothing expected of me but to care for myself.
To learn how to breathe again.
To be well.
But the price for such escape is too high.
And I hold tightly to the countless moments of grace I experienced amid the pain and disquiet of this illness. These are gifts I won’t forget.
The innumerable ways my friends nurtured my husband and daughter during the most frightening time of their lives. My friend Kary’s gentle, undemanding support, soliciting the prayers of so many while still guarding our privacy. My husband’s partner shouldering the burden of their business so Andy could focus on me, while his wife brought meals to the hospital to ensure that he was eating. My daughter’s friends, who walked her dog while she was at the hospital, left her protein bars, and flowers, and notes of encouragement; her fiancé, Darren, who was her rock when her world was crumbling.
Janice, filling our fridge with food; her many texts of encouragement to Natalie, Andy, and me, even as she prepared to move cross country; my co-workers’s willingness to assume my duties for weeks on end, without question, complaint or resentment. The dozens of cards, flowers, and gifts that arrived daily; the meals prepared and delivered. My children’s dad and stepmom’s love, reminding me how fortunate we are to share an unbreakable bond; their extra visits to Daniel so he wouldn’t feel my absence as strongly.
Marla using her medical knowledge as envoy between the hospital staff and my family; her daily texts and calls to my brother and sister-in-law in Tennessee, keeping them informed as they worried and prayed, miles away; the lunches and company she offered those first days home, filling in gaps in the story, my understanding of what had happened to me; shuttling me to my first haircut when I was still too shaky to drive.
Andy’s resolve to stay confident, and positive, and strong, despite the dread that nearly consumed him; his visits, morning and evening, as I recovered, himself exhausted from work and the insistent barrage of calls and texts seeking updates on my condition. His patient calm as I came back to this world, his assurances that everything, everything, would be all right. His admission, voice breaking, that he feared he would lose me. That he didn’t know how he would survive if I did not.
And Natalie, my shining star, who was there for me every single day, who tacked photos of the people I treasure on the wall in front of my bed as I lay unconscious, believing that, somehow, I would sense how deeply I was loved, how much I had to come back to. Who ran interference with family and friends through countless texts and calls, who held it together like a warrior even as she was breaking inside. My daughter, the only one to understand my whispers those first bewildering days, my voice frail and rasping from the ventilator; who massaged my hands and forearms, covered with bruises from wrist to elbow, using lotion she’d remembered to bring from home; who traipsed and fetched and advocated, who protected me, who fed me like a child when I was too weak to feed myself.
*****
Two weeks after I got home Andy took me up to Wisconsin to see Daniel, my first visit in a month and a half. On the way he recounted the stats of my illness as it had progressed, the first glimmers of hope when hope was yet a rare commodity. He provided a timeline, a picture of how dire my illness had been.
We wondered together what caused my turn-around just hours after arriving at Evanston Hospital. Had the antibiotics finally kicked in? Was my body rested enough now to fight back? Was it simply coincidence?
Andy didn’t think so.
“I think it was Natalie,” he told me. “Her message to you as they bundled you into the ambulance.”
I don’t remember hearing it, consciously, with my ears. My heart, though, heard it loud and clear.
“You’ve got to make it, Mom,” she whispered urgently, her face bent close to mine. “You’ve got to get it together now. You have to be there, at my wedding. I can’t do it without you.”
A month from now Natalie and Darren are getting married. And I will be there for her.
I will be there.