In this series, it is my intention to share the benefits of my Buddhist practice as a tool for health and healing. The posts will be chronological, and will document my progress. My Buddhist practice centers around chanting a powerful mantra: Nam-Myoho-Renge-Kyo. Like meditation, chanting is a wonderful way to relieve stress, become centered and grounded, and clear your mind when times are tough.
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Standing in the waiting room of the ICU, I was immediately struck by the power of mortality, of living and dying from one breath to another in the lottery of time. From a distant corridor, I could hear a baby cry while I stood across from my mother-in-law, Loredana. Her face was weary and gray, and the lines on it mapped the worry she’d endured for decades. Her son, Alex, my husband, has Multiple Sclerosis, and she was the sole intimate witness to his decline until I arrived in the picture in 2012. But this story isn’t about me, at least not yet. We waited for the Doctor to arrive with news, which he eventually did. The intubation was complete, and Alex was in a coma. Somehow, we decided I would spend the night alone in the hospital, and I followed a nurse to my husband’s room. Nothing would have prepared me for the sight of the person I love the most wired up to beeping machines and breathing with the assistance of a big, blue tube which compressed and expanded with a rhythmic hum. Juxtaposed against the quiet of the space, the machines roared while the life they continued lay motionless, only fluttering an eye on occasion. I dragged a chair to his side, took his hand, and decided I would tell him all the things I loved about him, about how much he meant to me, and how much he had changed me in ways I could have never imagined. But the words were choked out by silent, hysterical hyperventilative hiccups and so I took a breath. And then I did the only thing I could think of to sooth myself: I chanted Nam-Myoho-Renge-Kyo.
I spent the night in a ball on a recliner in the corner. It was cold, that deep kind of cold that chills your bones, while my mind ricocheted from the current terrifying moment to the few days preceding it. Everything had happened so fast. A few days earlier, Alex started complaining of severe stomach pains. Because he uses a wheelchair and neither one of us drives, we called the paramedics. They checked him out and assured us everything was normal. But a few hours later, I awoke from a deep sleep to find the dog standing in front of me with a concerned look. She walked over to him, sniffed, and walked back to me anxiously, as if to tell me something was wrong. He then said, “I think I have to go to the hospital”. What followed was a whirlwind. A CT scan that showed an intestinal blockage. A barium endoscopy. A full, open abdominal surgery, where it was discovered that Alex’s small bowel had twisted. The surgery went well, and we thought we on the other side of every bad thing, when he vomited and ended up with aspiration pneumonia. A team of experts and onlookers was assembled, and they determined that a medically-induced coma was needed. And so, here we were.
The first night of the coma, I found myself examining his face for any signs that he could hear me. There were moments that he stretched his head forward. Maybe he was cold, I thought. He liked to sleep with his head under the covers. Almost every moment of the night, I saw nurses tending to him. There were IV drips, blood pressure readings, and wound dressings. From my post in the corner, I silently chanted, or I asked questions that no one could give me questions to. “Is he going to be okay?” The next morning, I left as the sun was beginning to rise. Exhausted, thirsty, and scared, I drifted in and out of sleep in the back of an Uber. At one point, I opened my eyes and thought I saw a Buddhist statue, but it quickly disappeared.
I had been told what to expect during the coma. After 2 or 3 days, he would be woken up for short periods and his breathing would be tested. When it was certain that he could breath on his own, they would discontinue the coma. Through all this, I continued to chant. I chanted for a miracle, that one singular instance of divine assistance whereby everything would be over. To be honest, it was the only solace I had. My family was 2500 miles away, in Pennsylvania, while I was in Southern California. They had no intention to fly out to be by my side. My mother-in-law could barely hold herself together, let alone support me.
I was, however, lucky that I had two friends, Farah and Pedro, a married couple, that I have known for twenty years nearby. They split their time between Los Angeles and the Temecula/Murrieta area which is where we live. Farah was visiting me when we got the call that Alex was awake from the coma and breathing well. It was two days after he was intubated.
Because he was still coming off medications, I did not visit him until the following morning. He was moved to what is called the Step-Down unit. He was in good spirits, though weak and tired. He hadn’t moved his body for days. Ordinarily, he could stand, use his arms and hands, and transfer from his wheelchair. Now he was so weak he needed assistance to do everything. Within two days of being in this new unit he developed a terrible infection. More tests were run, and additional antibiotics were started. The infection led to a gaping necrotic wound. Now I felt certain that it was his time to pass into the next life, because I genuinely did not know how anyone could survive so much. I chanted for a miracle again, though. I chanted for his healing. I chanted for mine.
A few days later, he was ferreted away in the night to what is called an LTAC, or long-term acute care hospital. Thus began three weeks of more wound maintenance, IVs, and medications. We incorrectly assumed that once his course of treatment was over at the LTAC he would come home. We thought he would start moving again and he would go back to being who he was before. This was wishful thinking. He could not do anything for himself. He needed help to eat, use the phone, push oxygen into his lungs, and even to blow his nose. The muscle weakness he had experienced was profound and significant. He needed to go to a Skilled Nursing Facility where he could get Rehabilitation services and additional wound care.
Again, he was moved to another facility. This time, it was over an hour away from our home. The place was dismal and dreary, and mainly filled with residents who spent their days in front of glaring television sets, just waiting for the inevitable end. Alex was settled into a room with a roommate who liked the lights off, the door closed, and the drapes drawn. The only signs of life he saw were the nurses who fed him and cared for his wound. Alex, in this environment, started to spiral. Physically, he became even more frail, and mentally, sluggish and slow. I dreaded visiting him, not only because of the depressing facility, but because the life was fading out of him. Whole conversations would center around who he did and did not like on staff. I tried to get him into acute rehabilitation twice. This is a 21-day stint in a rehabilitation hospital where a patient with good potential for recovery works with a team of physical, occupational and speech therapists to regain lost function. Twice, he was denied. After the first denial, the admissions coordinator instructed me to book an appointment for Alex with his neurologist, who was part of the same hospital, and who (they hoped) could pull a few strings to get Alex admitted. I immediately phoned the office and got an appointment for the next day, and then managed to get an ambulance ride arranged by the SNF. I was certain that this was all due to my chanting, that things were falling into place and the Neurologist would help him.
The next day, I took a long Uber ride to the Skilled Nursing Facility at 6:45 AM. My goal was to get there in plenty of time for the ambulance, because I had to provide a $450 dollar check for the ride. At 9:30, the scheduled arrival time of the ambulance, there was no sign of it, nor at 10, the end of the window, or at 10:15 when I called the dispatch in a panic. The drivers did not arrive until 11 for an 11:30 appointment to a doctor’s office than was an hour and a half away. When the drivers finally arrived and took my husband to the ambulance on a stretcher, I lagged behind them trying to get approval from anyone from the doctor’s office to allow us to arrive late. I finally did, but by the time I reached the waiting ambulance, I was in tears. I sat on the narrow bench in the back of the vehicle and watched the mountains fade as we descended to Encinitas, on the shore. No calm would come to me as my heart raced inside my chest.
As the staff of the hospital and the ambulance drivers struggled to get my husband into a wheelchair, I lamented with my mother-in-law about the tardiness of the ambulance and how stressed both Alex and I were. Finally, he and I went to the appointment while she stayed behind with the drivers.
Upon entering the office, we were greeted coldly by a nurse who took his vitals and left us with our thoughts. We were certain that when the great and powerful Neurologist, Dr. Smythe (I have changed his name) arrived, our problems would be over. We were here. We were safe now. As we heard the clicking of his Italian leather shoes, I felt myself relax for the first time that terrible day. The doctor entered the room and greeted my husband with a grin. “So how can I help you today?”
Alex explained that he was currently in a nursing home after a surgery, he wanted to get into the acute rehabilitation program, and he wanted help to do so. The doctor gave him a three-minute neurological exam and said “No acute rehab will take you. There’s not much they can do, maybe give you some tools to help you eat. Some steroids could help. Call your surgeon and ask if you can take them—probably not though with a wound.” I felt my throat tighten, and I knew I was going to cry. Alex asked, “What should I do now?” He and I both knew that he was being dismissed to die.
“Why don’t you go home?”
I looked at Alex, he looked at me, and we both stammered “How?” See, Medicare, Alex’s insurer, will only allow for intermittent skilled care visits at home, not the round-the-clock nursing care that was required. They would pay for the SNF where Alex was wasting away, but not for a few hours of home care that would save him.
“Go on Medicaid?”, the doctor offered. Medicaid helps the neediest and sickest of the population get home care services.
“Can’t, our income is just above the limit.”
“Yeah, you have to be destitute,” he chuckled smugly. He was wealthy from both his neurology practice and from payments from pharmaceutical companies. The struggle to afford needed health services was something he would never have to worry about. After this, he tried to make a joke of some sort, but my face was so full of fear and anger, that he walked out. The surly nurse came back with a prescription for an MS drug that cost more that we both made in a year, and a muscle relaxant. Alex left to go back to the facility in an ambulance, and I went back home with my mother-in-law. I was completely disheartened, disgusted, and exhausted. On top of that, Alex was going to have to start paying $183 dollars a day co-pay for the facility.
“For that price,” my mother-in-law suggested “we could bring him home.”
Her realization immediately started the wheels turning in my head. Could we do it? Did we have the resources, knowledge, and capabilities? She was seventy-five years old, and I was fighting a losing battle with relentlessly progressive spinal arthritis and needed to use a walker for ambulation. It seemed like an impossible task. There is no book or website that directs you on how to bring a loved one home from a nursing home when they are severely disabled.
At home later that night, I chanted. I had become aware that the miraculous recovery I had wanted wasn’t going to happen, and so I shifted my focus to requesting wisdom and direction. I asked that the right people be brought into our lives so that I could bring my husband home safely. I asked for physical strength, emotional fortitude and patience. I knew this was going to be hard. When I spoke to Alex, I mapped out a plan for him of what would be required. Because he wasn’t quite ready to come home due to the existence of his wound, he decided to stay at the SNF for twelve more days.
It wasn’t much time to do what needed to be done, but thanks to my chanting I had a lot of help from strangers, my mother-in-law, and friends. The living room furniture was moved to the garage and replaced with a hospital bed, patient lift, rolling table, and a variety of supplies and other durable medical equipment. An alternating pressure mattress and ankle boots would prevent pressure ulcers. The room was turned into the perfect sanctuary for convalescence and healing.