© Copyright 2021 by Winston Wight
In 1955, my mother was stricken with polio and hospitalized for a year. I was only four years old at the time and couldn’t grasp how much her illness and disability would impact my entire family and her for the rest of our lives. In 1996, my mother was stricken again, this time with post-polio syndrome.
The phone message jolted me as I learned my mother was in the hospital. Just moments earlier, my wife, sons, and I had piled out of a yellow taxi in front of our apartment building. We were returning home from an exhausting reunion with Susan’s extended family at a beach back east. Tired and hungry from the long flight, all of us scattered the minute our door opened. I set the luggage aside and walked over to check the blinking answer machine. That’s when I received several messages from my brother Steve that Mom was at the hospital and to please call him as soon as possible. With each message he gave a phone number for her room.
A chilling sensation flooded through me. His first call was three days ago when we had been on the road and unreachable before our flight.
I immediately entered the number, and he picked up on the first ring. I rushed through an explanation of why I hadn’t phoned earlier, and he briefly explained our mother’s condition.
“Mom’s alert and stable, and she’s right here, but the nurses are helping with her suction tube right at the moment.”
“It’s been a rough three days,” he added. “Things are pretty uncertain.”
“Uncertain, like how?”
“The post-polio syndrome, it’s advanced to where Mom’s unable to swallow on her own. Doctor Keene says her CO2 levels are high, and she’ll probably need a tracheostomy to survive. He also wants to insert a feeding tube in her stomach.”
Steve suggested I come as soon as possible and shared that our mother’s room was on the fourth floor. I remembered that our younger son had been born on the fifth floor in the same building the last time we were there less than two years ago. Susan stayed home with the boys while I rushed to the hospital, a ten-minute drive across town. When I arrived, my mother was sitting up in bed, and Steve was standing nearby, holding a long blue tube with a “wand” on the tip connected to a machine near the front of the bed. The device was next to a larger apparatus measuring her vitals. An IV was connected to her left arm.
Mom cast a weak but welcoming smile. “It’s been quite an exciting few days while you were gone. Did you have a good vacation?”
She gazed at me in the matter-of-fact way she usually greeted me with, acting as though things were normal even though they weren’t, every moment a major effort just to breathe. The polio long-ago had destroyed most of her lungs and muscles, yet here she was, calm and collected, her gaze still sharp behind her thin-rimmed glasses. Clad in a standard pale-turquoise checked hospital gown, her straight graying hair was neatly combed, draping just below her ears. Although maybe even thinner than when I last saw her a few weeks earlier, she still exuded an uncanny inner strength.
“Really, Mom. Here you are in the hospital, and you’re asking about my trip?”
She shrugged her shoulders. She started to say something, but then said, “Just a minute,” and motioned to Steve with her right hand.
He quickly gave her the long blue piping, and Mom stuck the wand down her throat, making a sudden sharp hissing sound. She forced a cough and repeated the maneuver before handing it back to my brother, who reached for a pink plastic dish on the table next to the bed and squeezed the tube’s contents into it. He shot me a troubled stare.
Mom said, “That’s been the routine these past few days.” She still sounded calm.
Steve looked exhausted, though. His jeans and polo shirt were now noticeably wrinkled and motley, probably from having slept in them the previous night while staying with Mom in her room.
He brought me up to date. “A few days before, she was at home having difficulty swallowing and running a slight temperature. She called Doctor Keene, who said to get down to the hospital right away. Luckily, Camila was there that morning helping with errands, so she drove Mom to Emergency.
“She was hoping she’d just need to be in for a few hours,” Steve went on, “but Doctor Keene said the situation was serious, and she’d need to stay in the hospital until they cleared this up.”
Mom cut in. “He means until I get a tracheostomy and permanent feeding tube,” she grumbled. “Doctor Keene lives for news like this. The Grim Reaper.” She started to choke, and Steve handed her the suction wand.
“She needs to do this every few minutes,” he said to me with sunken eyes. “I’ve been taking turns with Camila staying with Mom at the hospital, but Camila’s going to be busy the next three days with other assisted care folks.” He gave me a tired, tense gaze. “Dave, can we talk further about things in a little bit? First, though, I could use a break. I haven’t eaten since noon today.”
“Sure. Take all the time you need. I’m sorry this has all fallen on your shoulders.”
He motioned for me to take his spot closer to the machinery and handed me the tube and dish. “You’ll get the hang of it,” he solemnly quipped as he left the room.
I held the equipment awkwardly as I stood at the end of Mom’s hospital bed, looking at my fragile but tough mother.
Mom smiled. “Well, it’s been a nice run,” she said.
Was she saying goodbye?
“You make it sound like it’s all over.” I said, starting to feel my head ache. I felt tired from the long flight back and the shock of my mother being in the hospital, talking as though she was ready to let go. “Aren’t there still options?” I asked with a pleading sound in my voice.
Mom’s breathing appeared steady, and her face still had some color. “Doctor Keene said there’s a slight chance I’ll stabilize on my own and be able to go home again, but not to count on it.” She paused, gathering her energy, and went on. “He’s quite adamant that I’ll need a tracheostomy, feeding tube, and around-the-clock assisted care for the remainder of my life.”
She started choking but caught her breath. “He recommends the procedures be done right away, saying I would recover quickly and be moved to a nursing facility in the next few days.”
She paused and peered at me. I think she was giving me time to visualize this drastic change. I could see she meant she’d no longer be living in her own suburban home or sitting every morning on her back deck. She’d no longer be breathing in the sweetness of pine trees nearby and hearing the wind blow through them, while reflectively looking out at the panoramic view of lush hills across the valley.
Nor would I get the chance to enjoy those moments together with her, just mother and son.
“It’s not going to happen,” she said. “I’m finished with the quality of my life growing steadily worse. I feel like I’m having to choose between two evils—death or a wretched existence. I…” She choked more violently this time and reached out as I quickly handed her the tube. She deftly grabbed it and guided it to her mouth. I stood by feeling helpless as she angrily suctioned her throat three times.
She handed the full rubber piping back to me, and I emptied it. For a moment we silently looked at each other.
“I’ve fought with this polio long enough.” Her words sounded firm and resolute. “I’m okay with things,” she said. “If this is the end, I’ve come to terms with it.”
She had talked to me before about the possibility this day would come. For years, since I was a young boy, I had braced myself for something happening to her again—the flu, a fall, or a sudden significant downturn—leading to her death. But lately, I had mostly stopped dwelling on it; Mom had survived so long I had begun to believe she would continue living indefinitely.
Still, over the last few years, she had asked if I would aid her when she was “ready.” She had studied up on the options for assisted suicide, including having someone there to give moral support and provide aid if necessary. When she asked me a year or two earlier if I would be willing to do this when the time came, I said I wasn’t sure, that I’d have to think about it. I knew assisting her death would be a humane thing to do, but I felt torn about it. Helping her that way might haunt me for the rest of my life. But refusing to do so at such a critical time…that would haunt me, too.
Over the last couple of years, Mom had gotten her necessary legal papers in order, including her final will, living trust, and power of attorney appointing Steve and me to make medical decisions on her behalf in case she became incapacitated. These provisions had a no resuscitation clause stating that she didn’t want any medical intervention to prolong her life.
“I’m serious about it, David. Doctor Keene is going to be coming in tomorrow, and I want Steve and you to be my advocates and insist I not get a tracheostomy or feeding tube.”
I wanted to protest. My head continued to ache, and now my sinuses were acting up. “I guess that means all bets are off with the condo I just found for you in Berkeley,” I said.
Just the month before, Mom had agreed to sell her home in the Orinda suburbs and move into a condominium in Berkeley if I could find a suitable place near our apartment. A couple of days before going back east to visit Susan’s family, I had seen one for sale just two blocks away, a two-bedroom with lots of light and a great view. I had already been picturing us visiting and Mom giving her grandsons rides on the back of her electric scooter. Even though she had grown used to small-town life, the city of Berkeley was where she was born and grew up. She still had deep roots there, including life-long friends and my family.
“Let’s see what happens in the next few days,” she said.
Mom had wholly prepared for the moment, and I was still feeling in shock from the long plane trip and was light-years away from being ready to help her. I was also feeling scared, wishing this day would go away and we could start over again with my mother recovered and out of the hospital. But I knew it wasn’t going to happen. She was bravely facing possible death, and I would need to find courage fast if I were to be of any help to her.
The thought of her not being in this world as one of the most important people in my life and as the constant safety net for both my family and me was jolting and unimaginable. She was the main person I could always count on to speak the truth to me, even when the truth was difficult to hear.
My mind flashed back to a discussion we had seven years ago in 1989 when Susan and I were living in Nevada and were considering making the move back to California. Her words struck me by surprise at the time and remained embedded in my memory ever since.
I had driven down from Reno to the Bay Area for a couple of job interviews and was staying with Mom at her home.
I had just pulled up into her driveway and turned off the engine when the car began to shake violently, as though four big guys were rocking it from side to side. Getting out, I looked up and saw the telephone wires oscillating in ten-foot waves. The ground was rolling beneath me as I tried to walk, and I had to lean against the car to steady myself. Finally, the trembling stopped.
I rushed inside the house. Mom was there, shaken but alright. A floor lamp had toppled over in the living room, and in the kitchen some glasses had shattered on the floor, having fallen out of the cupboards, now hanging open. The power was out.
For the next hour, we cleaned things up, listened for news updates on the transistor radio, and began settling in while waiting for the power to return. After sunset, I lit candles and placed them on the kitchen counter and in her office, too, where we sat together in the fading light rehashing the events of the evening and how grateful we were to be alive and unhurt. Mom brought up her concern about the power being off and how long she could last without her electric respirator.
“I’ve got a Life Alert call button on my necklace, which could bring the fire department here in a few minutes. Then again, if the firemen are out handling all the other emergencies, I guess I’m out of luck.”
The thought of Mom being at risk because the power went out was sobering. I hadn’t realized until then that she’d lived with this danger for several years now, ever since developing post-polio syndrome. Steve living just twenty minutes away from her was somewhat comforting, but there were no guarantees he’d be around at a critical moment. Nor would I, living in Nevada at the time. Moving back to the Bay Area would up the chances that I could help in an emergency.
I felt relieved to have been at Mom’s house during the earthquake—to be there for her. What I remembered most about that visit, though, was not so much having been there for her, but that she had been there for me.
That evening, Mom went on speaking in the warmth of the candle light, her thoughts wandering. “I want you to know how sorry I am for criticizing your father so much when he was alive.”
I didn’t know where she was going with that line of thought and felt my shoulders tightening up. I shouldn’t have felt surprised when she chose this time together as another opportunity for one of our mother-son “counseling sessions.” After all, we'd often hang out together in her home office whenever I came for a visit—the place she met with her therapy clients. She'd converse while reclining in her favorite leather chair. She’d also have these same “chats” with Steve, Susan, and several neighbors and friends who’d often stop by and visit, only to end up confiding their deepest personal concerns. With Steve and me, though, Mom seemed to prefer sharing what she thought was wrong with us, observations she was often right about. Also, at least with me, she would sometimes express her grief about the past. I suspected it was her attempt to help me grieve, too.
This time, she sounded much more like a mother than a therapist.
“That’s all right.” I shrugged, standing up to search restlessly through the collection of psychology books lining her book shelves. “It’s water under the bridge.”
We silently gazed at each other a moment, and I caught the sad, somber look in her eyes. “What?” I asked.
“I didn’t realize back then when I would judge or criticize your father in front of you, not only was I making him feel attacked, but I was probably making you feel that way, too.”
I didn’t say anything as my stomach began to churn.
She went on. “I feel terrible about the year I was in the hospital with polio…you were so young. You must have felt totally abandoned—feeling that no one would be there for you. I’m afraid from then on, you never let me back into your life again…or ever really trusted anyone for that matter.”
I didn’t want to hear this or talk about it. Yet I did. Her words scared me and struck a deeply buried wound, one that still opened up randomly in my mind when I least expected it, and had done so my entire life.
“My having polio defined our whole family.”
Mom’s words reminded me of Dad’s. “It’s time to grow up now,” he had said to me so long ago, gravely looking first at the ambulance in front of our house, then at me with his arm around my slight shoulders. Moments later, without glancing back, he climbed into the back with Mom and the paramedics, leaving me, my brother, and grandparents to watch the ambulance drive off. How was I supposed to grow up? I was only four.
I understand now it’s just something parents say so their children will behave, but I didn’t really grasp that for a long time. In the meantime, I got my dad’s message and learned not to cause a fuss when we went to live with my grandparents while Mom was hospitalized. I also learned not to ask for my mother, and not to let anyone know how frightened I felt. By the time Mom was released from the hospital a year later, hooked up to a respirator and barely able to walk, I wasn’t about to count on her again. The best I could, I learned to handle my feelings on my own.
“Before it’s too late, I want you to find it in your heart to forgive me.” Mom’s words brought me back to her office, with her still trying to reach out. “Not for my sake—I’ve accepted I might have lost that little boy I always wanted to love and cherish. But I want you to forgive me for your sake so you can be free of what happened way back when you felt so alone and unprotected. I worry there’s a part of you that’s always holding something back, never totally sure about how much you can trust. I would hate for you to live the rest of your life that way.”
I was trying to distract myself by flipping through a book I’d pulled off the shelf, but when I glanced her way, I saw tears in her eyes.
Her words were ones I felt I had needed to hear my entire life without really knowing it. Though, now that she spoke them, I didn’t know how to respond. I didn’t feel ready. If I let her in right then, I’d be opening the floodgates of grief I’d been holding back all these years. My throat suddenly constricted, choking off the words. “It’s all right, Mom,” I finally managed to say. “It wasn’t your fault. We all did what we could.”
Our conversation that evening was awkwardly interrupted when a neighbor rang the front doorbell to make sure my mother was okay after the earthquake. Although I remember feeling relieved to let the discussion drop at the time, the talk with my mother deeply affected me and slowly began to thaw what had been a frozen place in my heart. Ever since that talk, I gradually grew to trust her more and more, almost as much as a typical son might have done all along. I had also come to respect and admire the courage and inner strength it had taken for her to survive all this time, despite the difficulty just to eat, walk, and breathe. Although my mother and I didn’t speak much further about our relationship since that evening when she asked me to forgive her, our bond had grown deeper, and I found myself embracing the fact that she loved me and always had. “When I was in the iron lung almost forty years ago, and given a slim chance to live, part of me simply wanted to let go and die,” I remember her telling me once. “But the other part knew you boys all needed me and that no matter what, I had to stay alive and get well enough to come back home to you. You and Steve were the people who mattered most to me; I knew that you needed your mother.”
Mom and I had at last grown closer and made peace with each other that evening, both grieving what we had lost as a mother and son and accepting and appreciating the bond we could still share in the time remaining. Now that we had finally found each other, I wasn’t ready to give her up. Although on the outside I was a grown man taking care of his mother in her hospital room, on the inside I felt like the four-year-old boy about to lose her again.
Steve volunteered to stay one more night in Mom’s hospital room while I recovered from the long flight home that day. When I checked in with Susan on the phone, she said she’d come and spend the next night; then I would take the following evening after that; then we’d rotate back to my brother—a rotation we’d keep as long as necessary.
The following day, Susan and I arranged for our boys to stay at a friend’s house. We then went to the hospital, where Mom was feeling about the same as before, still needing the suction wand every few minutes. My headache and sinuses had cleared overnight, but hinted at a possible return.
Doctor Keene came in around nine o’clock and talked with Steve and me outside of Mom’s hospital room. He was ready to perform the tracheostomy and expressed confidence that she could live for several more years after the procedure was performed, along with a permanent feeding tube. Steve and I firmly informed him that Mom wanted no further intervention, and we persisted when he tried to convince us otherwise.
“She’s very clear on this,” I told him. “And she wants us to respect her wishes, regardless of what it means.”
“And you do know what it means?” Doctor Keene asked. His shoulders drooped and his eyes looked crestfallen, as though he, not Mom, was the one whose life hung precariously in the balance.
I could identify with him. I, too, felt my own fragile life hanging by a thread.
Moments later, he shrugged his shoulders and said, “Okay, I’ve done everything I can.”
After Doctor Keene left, Steve went home to get some rest, saying he’d take the day shift tomorrow in relief of Susan.
That day went surprisingly well. Friends occasionally called or came by to visit Mom. I phoned her younger siblings Roy and Don. Roy, the elder of the two brothers, planned to drive up in a couple of days from Palo Alto with his wife. Don, the youngest, would visit Mom that afternoon, coming from nearby.
Mom needed to keep her hospital visits short to preserve her strength for swallowing and breathing. My wife was probably the only person she could be around for long stretches of time because Susan had a way of sensing just when Mom needed quiet and when she wanted to talk. Plus, Susan picked up on all the small things that brought comfort, like cooling her face with a damp cloth, brushing her hair, or massaging her hands and feet with lotion. She also initiated emptying Mom’s bedpan when the nursing staff took too long to come around.
When Susan came home from the hospital the next morning, she announced that my mother was doing even better than the day before. She said Doctor Keene had come in to check on Mom and indicated there was a chance she could still recover on her own and without any further medical procedures—but again not to count on it.
Later in the day, when I called Steve at the hospital before coming in to relieve him, he told me Mom had improved so much that she was able to get out of bed and take a short walk around the ward. “She’s hardly needed the suction tube today, Dave. And she’s sitting in a chair drinking some Ensure as we speak!” He said that Doctor Keene had looked baffled when he saw how much better she was, and said that if this continued, she might be released in a couple of days. “Still,” Steve added, “he said it’s too early to tell how things will turn out.”
I heard my mother’s voice in the background, telling Steve something.
“And Mom says to call the realtor. She’ll be wanting to see the condo that’s for sale.”
I felt elated thinking she was miraculously on the mend.
That evening, I arrived at the hospital to spell Steve. Mom was sitting in a chair beaming next to him. Steve boasted that she had downed the entire container of Ensure.
My brother went home shortly afterward. Mom continued to sit in her chair for the next half hour before starting to tire and needing to lie down. I helped her stand and guided her back to bed. We talked for a while about how special it would be for her to move to Berkeley so near to us and have another chapter left to share with her grandchildren. She sounded enthusiastic.
Soon, Mom said she should probably try to catch up on rest. “Especially after all that’s happened the last week. You don’t get much sleep when you’re half drowning all the time.”
We said goodnight, and I turned off the light and climbed onto my cot a few feet away. I lay there for a while, restless and awake, knowing I wouldn’t sleep much in the hospital surroundings. But I was glad that she was getting some rest. For the next hour, I could hear her breathing lightly and calmly. I was even starting to drift off myself.
“Are you awake?” Her voice woke me.
I nodded and sat up. “Yeah. Is everything okay?”
“I think so, but can you hand me the suction tube again.”
The words struck me cold. My mouth felt dry, and my head began to throb again.
“Don’t worry,” she said, sensing my fear. “You can’t expect too much improvement all at once. Remember, just yesterday Doctor Keene all but pronounced me dead.”
I nodded, feeling slightly more assured, and got up to turn on the light and hand her the tube. She forced a couple of coughs and cleared her throat.
“Good,” she said, handing the equipment back. “Hopefully that will do the job.”
I turned off the light and lay down again. Mom seemed to go back to sleep for a while, though every few minutes she lightly moaned and coughed. A little later, she again asked if I was awake and could I call for the nurse. “I guess I’m just not comfortable, and maybe they can do something to help.”
The nurse came in and said there was nothing particularly wrong other than the symptoms Mom was already dealing with, though it’s possible she drank more Ensure than her body could handle at the time.
After that, my mother drifted in and out of sleep for the rest of the night. A few times, she asked for the suction tube and another time needed to use the bedpan. Although the latter task felt embarrassing, I was grateful she could ask me to take this job on. I was taking care of her in a way not so unlike her caring for me as a child.
As the night wore on, I must have nodded off. In the morning, the nurse said Mom was running a slight temperature, but nothing like she had when she was first admitted several days ago.
Susan came in around eight to relieve me. I was ready to go home and get a few hours of sleep. I’d visit later that afternoon, and Steve would come to stay the night. Around noon, I was surprised when my wife showed up at home. She said that a long-time family friend had come and was glad to stay with Mom all afternoon so Susan could get a break.
“She looks okay,” Susan said. “If she moves to the condo, though, she’s probably going to need live-in help.”
I thought the same thing. Still, I felt happy that at least my mother would be around a while longer, however indefinite that might be.
In the middle of the afternoon, Susan and I took a short walk in the neighborhood. When we returned to our apartment, we saw the light blinking on the answer machine. It was Mom’s friend. My mother wanted us to get to the hospital as soon as possible—and to please call Steve and tell him to come, too.
“What do you think it means?” Susan asked. “Should we call back first and find out?”
I already knew what it meant. I had been waiting for a telephone message like this most of my life.
Susan must have been reading my face. “Maybe it’s not as bad as you think,” she said.
I was ready to cry, but stopped, knowing I’d have to brace and steady myself for the stretch ahead. I phoned Steve but only got his recording. He was probably out on a long run, trying to get a reprieve from the last several days. I left a message for him to hurry down to the hospital.
When Susan and I arrived, Mom was sitting up in bed, as though nothing had happened. I noticed, though, that the cot had been removed, her IV was disconnected, and the IV stand was empty. Her friend gave Mom a tender hug and whispered something to her, then embraced Susan and me, told us we were all in her prayers, and said goodbye.
As Susan and I faced Mom from the right side of the bed, she looked at us peacefully. “I’m sorry guys,” she said. “I’m afraid my body’s shutting down. I think I’m dying.”
Susan leaned in against me, and I put my arm around her, feeling like a stiff wooden soldier. It was the same way I felt so long ago when Mom developed polio, the day the ambulance took her away. I had stood watching with my coonskin cap on, as though pretending to be Davy Crockett would make me brave enough to withstand losing her.
“I tried to hang in there,” she said. “I just don’t want to fight it anymore…I promise, though,” she added, “when your time comes, I’ll be waiting for you on the other side.”
Although I was terrified that my mother was truly going to die soon, I never admired her courage as much as I did at that moment. She had been by far the frailest person physically in my family, yet at the same time, including now, emotionally and mentally the strongest. And though her promise to wait for me on the other side sounded sort of cheesy, her voice was heartfelt and sincere, as though she genuinely meant it—so I let myself picture that vision and feel soothed by it.
Mom’s voice again. “You might want to call Roy and let him know he’d better come soon.”
Roy answered the phone and couldn’t believe the sudden change of events, but said he and my aunt would get on the road right away. Steve showed up about a half hour later, and Mom shared the news with him, news that he, too, had already feared. An hour after that, Roy arrived.
Although Mom looked able to get out of bed and walk around when Susan and I had first shown up, it became apparent soon after that she was fading quickly. Her lips looked parched, so I fed her ice chips, and Susan gently rubbed her face with a cool cloth.
As the evening dragged on, Mom felt more and more discomfort but remained fully conscious. Her swallowing and breathing became increasingly difficult, causing a sensation of drowning, which was in fact what was happening. It seemed unfair for someone who had suffered so much the last forty years to suffer so greatly at the end.
She took her last breath around nine o’clock and then she was gone.
Twenty years have now gone by since my mother’s death. When I look back on how she died after struggling with polio for forty years, I still feel haunted at times by how much the polio robbed her of the ability to live a full life, and how much it took from my dad, my brother, and me. We all lost something the day she contracted polio, something we never got back again. At the same time over the years, I also witnessed how resilient my mother came to be. Her inner strength grew to become an inspiration and anchor for the rest of us. I realize now that I never really lost my mother when I was a little boy, and that my mother was really there for me all along. She still is.
Wight has worked as a professional grant-writer for nonprofit and
public agencies for more than 30 years. Since 1987, he has written
foundation and government grant proposals, raising more than $70
million in funding. He edited and produced Division Report,
the statewide mental health newsletter for the Nevada Division of
Mental Health, co-authored the government publication, Work
and Physical Fitness Levels of Park Rangers of Yosemite National
Park, and has written feature articles, including for
publications such as the Golden State Warriors Playbook