Passion Is Our Consolation for Mortality
Since I couldn't speak with those tubes down my throat, I had to communicate in writing, which is difficult when you're lying on your back, semi-conscious, and drugged to the gills. But it had to be said; it felt urgent. So my daughter, Tess, held the clipboard while I scribbled my message in shaky box letters: "I have a book to finish. Sandalwood." Tess says it was the one message I wrote more than any other.
It was November of 2009. After a serious hiccup during routine gallbladder surgery, I found myself on life support. In the past year and a half, I've spent three months in and out of hospitals, five separate admissions, on and off ventilators, in and out of drug-induced comas — really sick. I have ARDS (acute respiratory distress syndrome) an ordinarily fatal complication. But I have survived against ridiculous odds because I am blessed with loving family, phenomenal friends, and a passion for my work. Love saved me sounds so corny (like the title of a bodice ripper) I actually winced as I wrote it, but there is simply no way around it; it's true.
I had a breathing tube down my throat, a feeding tube in my stomach, a tangle of cardiac wires everywhere, and IVs in my arm and neck. They tied me to the bed so I wouldn't pull anything out in my drug-addled state, and when my husband objected to the restraints they gave me paralytics to induce a coma.
People always wonder whether coma victims are aware of what goes on around them. I can't speak for everyone, but I was aware and it was like living a nightmare. I couldn't talk or move and I tended to fade in and out so nothing really connected. I would have been scared out of my wits without the friends and family who never left my side. Never.
Some of the drugs they gave me induced hallucinations. One time, while on a ventilator, I became convinced that I was in Japan, and that I could speak Japanese. A light fixture above my bed had a Zen-like simplicity, and I stared at it, fascinated, until a notion lit up my drug soaked brain. Of course! I'm in Japan! And when they take this tube out of my throat I must remember to speak Japanese. Ironically, the only Japanese word I know is sayonara, which would have been the only one I'd need if they'd taken the tube out just then. I kept drawing the letter J in the air, trying to let the nurses (who all looked faintly Asian) know that I understood. Later, after I got off the vent and the heavy drugs, we had a laugh about my "trip" to Japan.
In some cases, you know you're hallucinating even as it's happening, like when I saw the Grand Canyon. I knew it wasn't real because I only saw it when I closed my eyes. Even as I admired the vast gorge, the sculpted rocks and crags, I knew perfectly well that I was critically ill and hallucinating in an ICU.
I got a reputation as a tough customer, fighting my disease tooth and nail, but after many months of relentless struggle, I became simultaneously depressed and philosophical. Would it really be such a big deal if I died? My family and friends would grieve for a while, but life would go on. I've lost enough people to know that. I'm not young anymore and I've had a good run — every dream has come true and every personal fear has been faced. Would the world end without another novel from Elle Newmark? Was it worth so much suffering for a few more years, possibly spent in long-term care and unable to write? No. I decided, it wasn't. I became willing to die and that's when the Grim Reaper began stalking me.
I saw him in the morbid bags they hung over me for repeated blood transfusions and in the stricken and serious faces around me. I heard him in the hushed voices and occasional shouts for meds or dressings NOW! I smelled him in the blood soaked sheets when they couldn't stop the hemorrhage from the PICC line in my arm. I tasted him in the bitter saliva that constantly dripped from my mouth. I felt him in every painful inhalation, every arterial needle, every debilitating coughing spell, and every ice-cold x-ray plate pressed against my bare back at 5 a.m. each morning. I recognized his calling card in the life-threatening blood clots that formed in my legs and lungs, and in the disposable Hazmat suits everyone had to wear after I developed hospital acquired MRSA and then Ecoli. I had been so sick for so long, and my prognosis was so bad, that I finally asked to be a DNR — Do Not Resuscitate. But my family and friends had other ideas.
My daughter dropped her life in New Mexico (a responsible job, a wonderful husband and two beautiful little boys) and stayed by my side. My husband and my son and my sister came to the hospital every day. A friend flew in from San Francisco and stayed for two weeks. Another friend came from Colorado and another offered to come from Pennsylvania. A local friend also came to the hospital every day and offered to stay with me when I came home.
They brushed my hair, suctioned my mouth, dried my tears, held my hand, whispered encouragement, listened to my ramblings, and read to me. My son massaged my hands and feet and covered my forehead with kisses. My sister always walked in with a smile in spite of her twelve-hour days as a school principal. Friends and colleagues sent flowers and hand-made cards and kept in touch with my husband to follow my progress. When I was better, they brought me news and books and funny essays from the New Yorker and we laughed together over David Sedaris' website. They rounded up all my grandchildren and put them on the phone to me, one by one. My husband brought my electric toothbrush and my softest robe.
When I couldn't eat because steroids ruined my sense of taste, they brought chocolates and salty crackers to cut through the bitterness in my mouth. When that didn't work, they tried to tempt me: my husband brought hot and sour soup from our favorite Chinese place; a friend brought tangerines she picked from her own tree; my sister brought the world's most fabulous cheeseburger; my daughter brought spicy Thai curries; my son brought almond croissants; my brother-in-law brought Krispy Kremes.
And my daughter sang to me. She has a lovely mezzo soprano voice, but she's shy about singing in public. Still, she stood in a busy ICU with people coming and going and sang Nina Simone classics and La Vie En Rose because she knows I like those. One night she began a soaring Schubert love song in German, but she had to stop because my heart monitor went bonkers. She was so beautiful, standing beside my bed, tired and worried and singing like an angel — she literally almost broke my heart.
My 91-year-old father was not allowed to see me. I was such a dreadful sight everyone agreed it would be too much for him. He didn't insist, although he often came to the hospital just to sit out in the waiting room and cry. He died while I was still very ill, so we never got a chance to say goodbye.
Meanwhile, my family and friends continued to care for me. My brother-in-law said we were like elephants. When an elephant gets sick, the rest of the herd crowds around to keep her from falling over, because if she falls she won't get up. That's what they did. They propped me up until I wanted to live again.
One day, I saw a woman leave the hospital on a hospice gurney. She was alone but for one uniformed hospice worker. I thought: there, but for the grace of family and friends, go I. Some things cannot be endured alone, and I stared at my Japanese light, overwhelmed by my blessings. It looked like the woman on the gurney had nothing ahead but a lonely death, while I had the love of remarkable people, a passion for writing, and a new book to finish. All the tubes and needles, the pain and indignities, the fears and anxieties melted away in a moment of astonished gratitude.
No illness can compete with that.
Three days after getting off the second ventilator, my daughter came to the hospital with my reading glasses and the notes for my new book, The Sandalwood Tree. She sat on my bed and said, "Even when your speech was slurry and you were too weak to sit up, you kept mumbling about finishing this book. So let's do it."
She helped me, reading the editor's comments aloud, leaning close to hear my hoarse, breathless answers, and taking notes. I could only work for about an hour at a time, but the next day we did it again, and then again, and again…
Needing more stamina for the rewrite made me work harder with my physical therapist. Needing to sharpen my mind made me read rather than watch TV. Working on that book and wanting to live to write another made me do the hated breathing exercises, submit to invasive procedures, and drink vile potions without complaint.
I remember being struck by the irony of the epigraph I had written for that book almost two years earlier: …death steals everything but our stories. I decided that The Sandalwood Tree would be part of my story.
I once wrote, "passion is our consolation for mortality," but I'm now thinking passion might actually foil mortality. Nicholas Delblanco has written a new book, Lastingness: The Art of Old Age, which offers evidence that sticking with creative work extends life, and I feel like I'm proving his point. I'm back home now, but my own hooded mortality still waits at the foot of my bed; I see him in my ravaged body and I hear him in the whoosh of oxygen that I still need 24/7. But I don't pay him much attention because I'm writing again. I believe (and my doctor agrees) that my work is helping me heal.
Extraordinary people grace a life that I am reclaiming with profound appreciation, and The Sandalwood Tree was released in April 2011. And death? Well, the Reaper and I have come to an understanding — I'm busy; he'll have to wait.