STORY OF A PATIENT ON VENTILATOR

I wade a lot in the ocean that is reading and play with the pebbles on its shores . Sometimes, I find gems. Carried in the torrent that is today’s life, not everybody has the time to play with pebbles.  I share those gems with you, here, to save you the time of searching in the pebbles. These gems have many colors. These colors are sometimes of tears, sometimes awe, sometimes science, sometimes medicine, sometimes love, sometimes introspection, sometimes smiles, sometimes anything.

Here is such a gem, shared with you-delve into its sensitivity of feeling-Published almost 35 years ago, it is a true story.

WOMAN IN BED No 10

by Sui Baier

MY TOES tingled. Nothing too alarming, but unusual. There was no time for concern that Monday morning. I had to get moving. I was in charge of the volunteer mothers at my daughter Elizabeth’s school, and this was my day on duty.

                         As my husband Bill shaved, I brushed my hair and slipped on my dressing gown before going down to get breakfast.

                        In the kitchen, I poured a glass of orange juice for Bill and one for myself. From the cupboard I took out bowls and a box of cereal. Then the bread went into the toaster. I reached for the first sip of juice, all in the easy rhythm of habit.

                       The orange juice burned my tongue-and my lips. How odd. The toast popped up and I buttered it. Again the rhythm took over as I carried the bowls, the cereal, the toast, the juice to the table. I took another drink. Again the burning sensation. It had to be my imagination; I had mixed it just last night.

                     I watched Bill as he drank his juice. “ Is it all right?” I asked. He glanced at me, puzzled, so I added, “It seemed to burn my tongue and lips.”

               “Mine’s okay,” he said. “It’s fine.” I tried the cereal. It tasted normal.

                          Bill left and I found myself wishing it weren’t Monday. Today especially, with the long weekend just finished, I wondered why I’d volunteered anyway.

                          It was 7.05. I gathered up our dishes, put them in the dishwasher and then ran upstairs to dress.

                        Houston’s morning air was balmy-it was December 1, 1980 -as I walked to the garage. When I put my foot on the car accelerator, the tingling was still there. I stopped for petrol and chatted with the attendant, but it was hard for me to concentrate. I nodded, rubbing my fingers absently, trying to stop the tingling I now felt in them too. And I wiggled my toes.

                             At the high school I walked down the hall towards the main office. The corridor seemed darker than usual, although the lights were all on. The hallway itself seemed longer.

                             I was relieved when I could finally sit down at the desk reserved for volunteers and search for my nametag in the file box. I struggled with the clip. Awkward gadget. It just didn’t want to go on right today. I glanced towards the window. It had started to rain. Suddenly I felt so tired, weak. Perhaps it was the weather – or the weekend was catching up with me.

                             The tingling in my toes and fingers had become more persistent. But there wasn’t time to dwell on such irritations. My job was to take all the incoming calls. The phone kept up steady ring-calls to transfer messages to note. Writing becomes increasingly difficult.

                             By ten o’ clock I could no longer ignore how I felt. A call came for one of the teachers who were on a free period in the common room. I trudged wearily down the hall to summon her. Then I found that I had to force my way back to the volunteer’s desk with real effort.

                             My mind raced for the name of a doctor. We didn’t have a family physician, just our pediatrician and my gynecologist. Today I needed some one else. I thought of Dr Lohmann *, my mother’s doctor whose clinic was near by. At least he knew me, having often seen me with Mother.

                            I rang Bill. “ I feel like something is wrong. I need to see a doctor.” Within minutes Bill drove up. He had phoned Dr Lohmann, who agreed to see me immediately.

                            Everything checked out normally. Dr Lohmann was puzzled. Then Bill mentioned that I’d had an intestinal virus the week before, and that gave the doctor a clue. Perhaps, he concluded, it was dehydration or an imbalance of electrolytes. He recommended rest and lots of liquid, “And if things aren’t better by Thursday, we’ll do some blood tests,”

                             My mother lived close by, so I went to her flat to spend the afternoon. I rested, just as the doctor ordered. Mother had been with us for part of the weekend. Our elder daughter, Katherine, away at Vanderbilt University for her first year of college, had been home for several days, and Mother wanted to hear about the rest of her visit.

                             That night Bill and Elizabeth prepared dinner. The evening passed quickly, normally. I had no difficulty negotiating the stairs; thought the bed was most welcome. I was sure I would wake up in the morning and be fine, all the tingling gone.

                             Bill’s alarm clock emitted its early morning call. Sleepily I shuffled to the bathroom for a drink of water. I stood there stunned, the glass in my hand, as the shock jolted me fully awake. I couldn’t swallow!

Nightmare World

BILL TOOK me directly to the hospital. Dr Lohmann had arranged for me to be admitted immediately. We gave the admissions clerk the customary information, and she handed me a form to above the paper, but I couldn’t write. What’s happening to my body?

                               Nurse and technicians came to my room. I was measured and weighed. Thermometers, blood pressure cuffs, syringes for blood. Dr Lohman arrived at eleven o’clock. He had been waiting for the lab reports, but they provided no clues. He was going to call in Dr Muenkel, he said, a top neurologist.

                                Throughout the day, the nurse tried to get me to eat and drink: jelly, ice cream, fruit juice, Nothing would go down. Dr Muenkel finally came at 7 p.m. Now, surely, we would get some answer. He checked my reflexes, which he said were good, and did some pinpricking without comment. “At this point,” he began, “I can only tell you it is probably one of three things: multiple sclerosis, myasthenia gravis, or Guillain Barre` syndrome,” He paused. “We’ll have to wait until we do a lumbar puncture tomorrow. Then we’ll know.”

                               As the doctor said goodnight, I repeated the names he had mentioned. All three sounded terrifying. The hospital room suddenly seemed cold and stark. I looked out into the night. Oh God, I want to go home! Bill held me, and we both fought back tears. “It’ll be all right; Sue,” he said. “I know it will.”

                                   At 10.30 the head nurse came in. Her words were measured. “I think. Mr. Baier, that we had better take your wife to the intensive care unit.”

                                  “Intensive-care!” I could hardly speak. “ No, I don’t need intensive care.” Terrified, I looked from the nurse to Bill for concurrence.

                                    I could hear the nurse speaking to Bill, but the words swirled incoherently. Bill came to my side and spoke gently. “I think you’d away better go, Sue.”

                                    ‘If I go, you can’t stay with me.”

                                     His voice was barely a whisper. “You have to, Sue. You haven’t been able to eat or drink all day. You must go so they can take care of you.’

                                     A huge hard mass formed in my stomach as we packed up my things. The nurse returned with a wheelchair. Then we were on our way through a blur of quiet corridors.

                                     Bill held open the door, and I looked around. There were a dozen or so beds in small, partitioned cubicles along the walls of a large room. Each cubicle opened into the main room, where the nursing station was located. Patients who were wired to all manner of machinery occupied most of the beds. The wheezing sounds of respirators filled the air. I prayed to be gone from this place. Instead, I was wheeled over to a bed with a number printed behind it on the wall. This was my welcome to Bed Number 10.

                        ‘I’ll be your nurse for the evening shift,’ a young man named Bruce said, as he helped me on to the bed. “You’ll have to wear a hospital gown in here. You can put it on now, if you don’t mind.” He walked out towards where Bill was waiting, and I could hear him say, “You can take home her pyjamas and everything else. All she’ll need here is her toothbrush.”

                         When Bruce returned, he reached for some kind of apparatus attached to a plastic tube. He told me to lie down and pushed the tube down my throat. I gagged and he pulled it out again. “I just want you to know what we’ll be doing when your condition gets worse,” he said.

                         This can’t really be happening I thought. This has to be a nightmare. Then Bruce told me to take of my rings.

                         “No, please,” I begged. “Not my wedding ring. I never take it off.”

                           “If has to come off,” he said flatly.

                           I fought tears as IU tugged at the engagement and wedding rings. My fingers were almost nonfunctional, but the anger made them work. I could not look at my husband when I handed him the rings. As Bill gathered up my pyjamas and dressing gown, Bruce gave him a paper bag to put them in and then asked him to leave.    

                           I was terrified. Bill was security. Everything else seemed so abrupt, so unreal. I clung to his hand. He kissed me. One last look and he was gone. Utter despair; total abandonment. Everything in the world was gone with him.

Nothing Moves!

THE NEXT morning the lumbar puncture was taken. Later a nurse inserted a catheter, and I was attached to an intravenous drip tube (IV), so that I could be fed.

                              Bill arrived at 11.30am. I tried to reach up to him, but I could not. The paralysis was growing steadily worse. I wanted to say “I love you” as he kissed me, but my lips would not move. Bill looked down and seemed to be studying his hands. “Dr Lohmann called me with the diagnosis. It’s Guillain Barre`, Sue.” His voice broke as he said my name.

                       “I don’t know much about the disease,” he went on. “They say it’s rare. Dr Lohmann has seen only one other case, and he said that one was quite mild. Yours may be more serious.’

                       A long, low, horrified “No-o-o” escaped my lips. “No! No! No!”

                       Bill clasped my hand, concern vivid on his face. “I stopped in to talk to the company nurse,” he said, speaking as reassuringly as possible. “She pulled out a medical book that had a paragraph on Guillain-Barre`.”

                        He reached for his note pad. “It’s an inflammation of the nerves, and usually follows some other infection like your intestinal virus. It causes paralysis, often starting in the legs and moving up rather quickly.”

                        By the rules of the intensive-care unit, visits could last only 15 minutes, three times a day. Already Bill’s visiting time was up. He kissed me good-by and told me he’d be back with Mother and Elizabeth at 5.30.

                          How, I wondered, would my mother and younger daughter deal with all this? Bill and I had already decided that we would not tell Katherine exactly how ill I was. At college for the first time, and one week away from her exams, this was one concern she didn’t need.

                           Right now, I didn’t want to alarm Mother or Elizabeth any more than necessary. I would try to be in good spirits for their visit, I told myself.

                           When Elizabeth walked into my room, she radiated confidence. Her smile was warm and genuine as she assured me that I would get well. But mother’s expression kept no secrets from me.

                           Always a woman of strength, she was at this moment over-whelmed with shock. She excused herself on the pretext of wanting Bill to be able to return to my bedside. I watched her shoulders heave with silent grief as she walked away.

                           Soon after the family left, two nurses arrived, pulling a trolley loaded with equipment. I was going to be hooked up to a respirator. They were placing a tube in my nose and down to my lungs to facilitate my breathing. It had come to this. I was too exhausted to care.

                          I awoke several hours later, terrified. My neck was limp and my head rolled to the said. There was a new noise-of course, the respirator. I tried my voice. No sound. My sense of panic intensified as I realized I couldn’t even call for help.

                          Suddenly Bill appeared at the foot of the bed. A nurse had phoned to tell him I was on a respirator. Was the tube uncomfortable, he wanted to know. I tried to respond, but my mouth would not move, except for a small twitch to on side. I could produce no movement of my head, hands or any other part of my body.

                          My eyes widened in frustration and terror, and Bill read the look. ‘You’re blinking your eyes. Can you blink just once if you’re able to control the movement of your eyelids?’

                         I forced my self to be calm. Then one slow, deliberate blink.

                         Bill smiled. “Good. Now your mouth seems to twitch to one side. Try to move it. And then blink once-yes-if you can control that too.’ With effort I moved my mouth. Then I blinked. “Great!” Bill said. ‘The mouth can indicate no, and a blink for yes. Now, Is the tube down your throat terribly uncomfortable?”

                      No, I signaled. Bill followed with a series of questions. We could communicate. But I had questions I could not ask. What if I lost control of my mouth, my eyelid? What else was going to stop working? Perhaps Bill could read those thoughts in my eyes, for he asked one more question. “Shall we pray together, Sue?”

                       My response was one blink.

                       Cupping his strong, comforting hand around my limp fingers, he bowed his head and prayed silently. For his brief moment, at least, I felt at peace.

Simple ABCs

THE NEXT morning I took inventory of every part of my body. Toes: nothing. Legs: no movement. No muscle tensing. My torso knew only the enforced breathing prompted by the respirator. No movement of my neck, or my mouth.

                         My mouth! I could no longer move my mouth. How would I communicate with Bill? My heart began to pound. At least it was till beating.

                         Bill arrived at 7.30. “Did you sleep well last night? Frantically I fluttered my eyelids. “No, Sue, one blink for yes; move your mouth for no.” Again I blinked repeatedly. He understood. “You can’t move your mouth, can you? Is that what you’ re trying to tell me?”

                         One firm closing and opening of the lids. Yes.

                         “Well, then how about one blink meaning yes, and two for no? Did you sleep well last night?”

                            I blinked once, paused an instant and then blinked again twice. Bill smiled. “Yes and no/” I responded with one blink.

                          The minutes passed quickly, and too soon Bill was telling me, ‘I’ll be back at 11.30.” When he returned as promised, he was rubbing his hands together in a way that told me he had hit upon a splendid idea.

                           “Your yes and no answers aren’t enough. You can’t tell me anything.” I did one very exaggerated blink. “All right, is there one word you’d like to tell me?’

                           Yes I had no problem choosing the word.

                           “All right. First letter-is it a consonant?” One blink.

                            “Is it a B?” Two blinks.

                             ‘Is it C?” Again two blinks.

                              On he went, until he got to H, where I respond with just one eye movement. The second letter, I indicated was not a consonant, so he began with the vowels until I responded affirmatively to O. Next we went back to consonants. Realizing how long it had taken to reach the first letter, he asked, . “Is it in the first half of the alphabet?” No, I blinked. He began with N and still had a long way to go before reaching T.

                            Bill was pleased. “Hot! You’re hot?”

                             Yes. Oh, how warm I was. The respirator spewed out a steady blast of hot air close to my bed.

                           Bill felt my forehead. “Why, you are hot.” He wiped my face and neck. “Would you like me to take blanket off?”

                              Oh, please. Yes.

                              Now I knew that I could cope. I could actually tell Bill what it was I needed.

                              I basked in that reality for only a few minutes after Bill left. Then my shift nurse came in to check my IV and turn me over. “Oh, Sue,” she said as she turned on the light. “You’re all uncovered. You must be chilled.” And she covered me snugly with the blanket.

                             Eventually I had an idea. Need chart, questions, I spelt to Bill a few days later. The idea clicked.

                                 ‘You want a chart with questions so the staff can find out what you need?” he asked.

                                  Yes. And one by one I indicated the questions he should incorporate. Hot? Cold? Radio on? Radio off? Back hurt? Turn? They all had to be questions with yes or no answer.

                                    The following day, Bill returned with my chart. He hung it on the wall behind my bed, under the number 10.

“Sue’s Stable”

IN THE early days of my hospitalization, a number of difficult procedures were performed. Often I avoided facing them by escaping into fantasies at out my past life, blotting out the doctors and nurses at my bedside….

                                   I’ve just graduated and am working in the accounting department of an oil company. I join the bowling league, and one Friday night we bowl against a team that has this fellow Bill Baier on it. He’s terrific. It’s obvious that he is showing off, but he’s nice-looking and I can’t help noticing him. The next day I look in the company records to find out something about Bill Baier….

                               “Tracheotomy,” they were saying to me, but I refused to listen. I felt a needle pierce my throat. Pain! Then numbness, Rough hands. I shut them out with closed eyelids and my fantasy. They cannot harm me if I’m not here. Dreams merge with reality. Then a faceless, white blur is shaking me. “Sue…. Sue.’

                                   They were giving me a nasogastric tube, a NG tube for short. A nurse, Phil had been instructed to insert the tube, which had to go up my nose, down my throat and into my stomach. The nurse tried and tried, but apparently couldn’t get it past a small growth in my nostril. I felt like a rag doll. It was a nightmare of agony, anger and fear. The nurse didn’t speak to me-didn’t tell me what he was trying to do or that he was sorry it was so difficult. I don’t think he even realized I was conscious. Finally, he gave up and a doctor came to do it.

                                       From then on I was fed supplements through the NG tube. I was also given regular intravenous feedings through the subclavian – a tube inserted in my shoulder, held in place by a couple of stitches, replacing the IV that was in my arm. I had been losing weight drastically and so they were forcing nourishment down as fast as possible.

                                          I now had a tube for everything. O counted them: the NG, the subclavian, the respirator, the catheter, and four sensors that plugged me into the nurse’s monitors.

                                          Each evening looked long and bleak after Bill left. So many hours it seemed, I was a silent object without awareness or needs.

                                    The problem became clearer to me over time. The intensive –care unit was not a place for long-term patients. The staff was trained for life-support care of the critically ill. They were neither equipped nor prepared to handle a long-term, totally helpless patient. I promised myself that if I ever got out of this, I’d do something for other people who found themselves in my predicament-helpless, unable to move. I would become a voice for those who couldn’t speak for themselves.

                                     The first time my respirator alarm sounded, I was terrified. I’d heard other monitors go off, but I wasn’t prepared for the proximity and loudness of my own. In the beginning, the alarms did bring immediate responses. But once the staff ‘knew” I was stabilized, they became more causal. Little things, such as a loose sensor on the subclavian, could trigger the alarm. Because of the difficulty of turning me, it was a constant problem to keep the sensors attached.

                                        One night when my alarm rang, Bruce was sitting at the desk studying. He glanced over at me with a why-are-you-bothering-me look, set down the book and came to check the machine. He found nothing wrong and reset it. Then it happened again.

                                          After several tries, Bruce said, “You’re fine. You’re just going to have to live with that.’ So the alarm screamed in my ear.

                                          After what seemed an eternity; a respiratory therapist came running into my cubicle. How long has this alarm been sounding? Why didn’t someone call me?” He was asking the wrong person.

                                       When I told Bill about the alarm and other examples of insensitivity, it was hard for him to understand. He had never been hospitalized. How could he appreciate that patients want to be turned when they are sore and tired not just when the clock or someone’s mood indicates it is time? They want to be looked at, talked to, seen as human being.

“Yes, Bill Knows”

 KATHERINE was home from college, and Bill was trying to prepare her for her first visit- for the tubes, the machinery, and the gauntness. But there was really no way to do so.

                                   She stood at my bed, almost frozen in place. She tried not to show her shock and disbelief. Dependable actress that she was, after barely a moment’s pause, she was smiling her impish grin, Learning to spell with me, “listening,” and answering with animation. Only months later would mother tell me that after Katherine left the hospital, she broke down and sobbed, “That can’t be my mother!”

                    One morning Bill stood quietly at the foot of the bed. There was a sparkle in his eyes. Slowly he raised his hand, and in it was a single Tiffany rose in a but vase. Tears filled my eyes, but inside I was a huge, beaming smile. 

                          After Bill and U were married, I began hinting that no one had ever given me roses. For years I kept after him, until finally I caught on that hinting to Bill Baier about something is the best way not to get it. He liked to surprise me. Finally, one Valentine’s Day, he gave me six rose. The blossoms are pale pink with a yellow centre, and the fragrance is magnificent.

                                                            I hoped the staff wouldn’t notice the rose cut from my garden at home. I was so afraid it would be taken away; there was a rule against having live plants in the ICU since they might carry contaminants.

                                   Happily, everyone seemed to overlook the single rose near my bed, and Bill continued to bring me a fresh one every few days until the season ended.

                                   Weeks later, while I was still confined to the ICU, my daughter Elizabeth confided in me: “So often at night, after we eat, Daddy goes up to his room-your room-and shuts himself off. Many times, I can hear him crying. I go to the door, wanting to go in, but I don’t know what to say to him-except that I know you’re going to get well. He knows that, too, doesn’t he, Mother?”

                      Yes Elizabeth, he knows. And it was his faith that kept me going.

A Christmas Gift

EARLY on Christmas Eve night, the three of them came-Bill, Elizabeth and Katherine-wearing their bravest smiles and carrying a tiny plastic Christmas tree, about 20 centimeters tall, bedecked with little bows.

                   It was so thoughtful of them, but so sad. The little plastic tree was almost too much for me to bear. I fought back tears and tried to show my gratitude with my eyes.

                      Bill and the girls were meeting friends for dinner at seven o’ clock, so their visit had to be brief. But I wanted them never to leave.

                      The night was bad. When turning me, a nurse new to my case repeatedly asked if I was all right. She couldn’t understand my response, and the harder she tried to position me comfortably, the worse it got. There was no way I would sleep this Christmas Eve. I just watched the clock and prayed for morning and the new shift.

                          Around 7am Bill, Mother, Elizabeth and Katherine paraded in. And what did I do? I immediately told them about my trouble. The brave, happy expressions drained from all four faces.

                          I hated what I’d done. Here they were, all wishing me Merry Christmas and trying so hard to be cheerful, and I had ruined everything.

                           When they returned in late morning, I was in better spirits, and there was a look of relief on their faces. Katherine and Elizabeth chattered away, telling me about their gifts. Bill was surely remembering, as I was, the early years when the girls rushed to tell us what the Santa had brought them.

                             Soon other visitors arrived, among them Paul, the priest who worked with the young people at our church. I was touched by the generosity of his visit on such a holiday. After initial pleasantries, his face became somber as he spoke of Nancy, a member of the church.

                              “Nancy is in intensive-care also, Sue. You might say a prayer for her. She’s had a heart attack. We don’t know if she’s going to make it.”

                               Nancy was a dear, thoughtful woman. I had just received a post card from her a few days ago. The reality of her illness brought me up short and made me realize I wasn’t the only person in the world in intensive care.

                               I began to spend more time looking about the unit at the other patients. I saw them being brought in from surgery or the emergency room. I wished I could let the solitary ones know that I was lending moral support to them. I knew now, having been tended by nurses helpful as well as indifferent how important caring and support can be. But I felt frustrated, unable to help anyone.

                                  Then I remembered Paul’s asking me to pray for Nancy. That was something I could do for her and for the patients here-pray for them! I wasn’t totally useless. I felt a bright, new sense of involvement, of worth.

Coming Back

AFTER only a week in the ICU, I started to receive visits from a man in a blue lab coat with perhaps the broadest, warmest smile I’d ever seen. He told me he was Charles, a physiotherapist, and from the first I trusted him. Twice daily he worked on my circulation, massaging my hands, fingers, arms, feet, toes and legs.

                                    Every day I took inventory of my body. I was convinced that if I thought hard enough about moving, I would be able to do it. After two weeks, a muscle above the front of my knee twitched. I believed I had made it happen! I was so excited. Usually, but not always doctors had assured Bill and me, Guillain-Barre` stabilizes after a while. Then the patient begins to return to normal. Was I beginning the long road back?

                                  I could hardly wait to show Bill. Leg, I spelt and I made the muscle twitch until he saw it.

                                “Hey, it does move!” he said. “Do it again.”

                                 But I found it hard to cope with my disappointment when days passed without further progress.

                                 I’d asked Bill repeatedly to find out something that would serve as a signal, or call button, for the nurses. Finally one noon he arrrived carrying a parcel-jingle bells!

                                 It was a 30-centimetre-long strap across my thigh, positioning it carefully.

                                 “Now, move that muscle.” I did. The strap fell off my leg and the bells jingled. A nurse passing by stopped to see what the sound was, and Bill was very pleased to explain to her and the others on the staff, that this would be my call bell. He showed them how to position it. 

                                 But even this ingenious device couldn’t allay my fears. One day I woke to find that a nurse had come by to adjust the respirator and had flipped the machine’s alarm system off so that it wouldn’t sound while she was working. She forgot to switch it back on!

                                  Fear churned in my stomach. What if the setting on the machine was incorrect? If anything went wrong, no one would know.

                                  I tried to look down to see if my lungs were expanding, but I was on my side and my gown was puffed away from my body. I had to be breathing, or I would pass out.

                                  I stared at the respirator. It sounded right. The same as it always did-but was it? My heart raced.

                                  When I caught movement in my peripheral vision, I tipped the sleigh bells. No one noticed. Now I had no away to signal. For over an hour, I waited in dread until, finally, someone came.

                                   I blinked alarm. Yes, the nurse understood. He flipped the switch back on and I began to cry. No one had told me the machine had a built-in back-up alarm. As he wiped away my tears, the nurse said, “I’ll be sure the staff watches this more closely, Sue.” But would they?

                                   By the end of December, a respiratory therapist noticed that I was showing some lungpower, but the slowness of other responses following my leg twitch had taught me that I couldn’t get too excited about one little sign. The next day the lungs did nothing on their own. A day or two later, though, they again showed some indication of being able to work. I allowed myself more optimism.

                                   On January 15 my head moved-not too much, but I could consciously move it.

                                   Bill had been doing research on Guillain-Barre` at a medical library. He explained to me how the disease attacks the coating of the peripheral nerves and then, occasionally, the nerves themselves, destroying them and causing paralysis.

                                   The nerve fibre grow back slowly-at the rate of about two-and-a-half centimetre height, it would take a long time for all the tissue to grow back. 

                                   As my lungs increased their ability to assist the respirator a little, the therapists began changing the setting of the machine for brief periods-to make my lungs work harder. The new setting was very frightening. The machine seemed to pause, trying to force me to breathe. If I didn’t breathe sufficiently for a certain number of seconds, which seemed an eternity, the machine would supply me with another few breaths and then pause again. It was exhausting to struggle with the irregular pattern of breathing, and coping with the fear left me drained.

                                   Gradually, every three or four days, the number of “breaths” per minute on the respiratory was decreased. Finally, late in January 1981, two of my favourite nurses, Harriet and Kay, changed the respirator setting so that I could breath without its assistance for a brief period.

                                   I couldn’t feel anything happening. “You’re doing fine, Sue. Think breathing,” Kay encouraged.

                                   “Look,” Harriet said, ‘she’s taking some.”

                                   A minute passed; a minute and a half.

                                   “Keep on, Sue. You’re breathing. Just try 30 seconds more.” They both cheered, and Kay reset the respirator to help me again.

                                   ”Two minutes,’ she said. “You did it!”

                                  Their excitement was infectious. I had taken a major step forward! That evening when Bill visited me, There were no complaints. Before he left, I spelt one word: hug. His eyes were moist as he reached carefully around all the tubes and sensors and held me close.

Up and Down-And Upstairs

I STARTED sitting in a wheelchair to build my strength. The first day I lasted 30 minutes.

                                  While sitting up, I finally could see my legs and arms. They were a ghastly sight. Charles estimated that I weighed 39 kilos. Bones protruded everywhere. They were a problem when I was lying down, but it was far worse when I was sitting, for my weight was concentrated on a small area. After just a few minutes in the chair, my hipbones jabbed painfully through the thin layer of skin. Nevertheless, my time in the wheelchair slowly increased, and by mid-February, I was at two and half-hours.

                                   The next step was to have the subclavian taken out. It had been my IV for two months. I felt enormous relief, not only to be rid of the tube, but also to be rid of the irritating sensor attachment that so often set off the monitor alarm.

                                  About two weeks later, another milestone: I realized I could swallow just a little bit. Several days later, while Elizabeth was visiting, Dr. Muenkel came in. The neurologist picked up my chart and studied it.

                                  “What has she been given to eat or drink since she began swallowing?” he asked.

                                  “Nothing, as far as I know,” replied the nurse.

                                  “Get her some ice chips.” The thought of ice chips was magnificent. Elizabeth watched the scene expectantly.

                                  The nurse brought a cup of crushed ice and held it out, uncertain what to do with it. Dr Muenkel took the cup from her, selected one small ice chip and positioned it on my tongue. It was cold, wet and fresh. After a moment of pleasure, I started thinking about my throat. A swallow is not something one can see. I concentrated, closing my eyes to avoid distraction. Then I felt muscles move ever so slightly, and the drop of melted ice slid down my throat. My eyes flew open in excitement.

                                  Dr Muenkel to the nurse. “Now give her a few chips every couple of hours-and anything else she feels she can manage.”

                                  I was delighted that Elizabeth could share the moment. So often she saw only the bad times, with any good news coming secondhand from Bill. “I can’t wait to tell Daddy,” she said, beaming.

                                  My times off the respirator, breathing with only supportive oxygen, were stretching out. Finally, on March 9, I was off the respirator from early morning until evening. The next day, I made a decision. I was going off the machine for good!

                                  Shallow though it was, my breathing never stopped that night. I could make it without the respirator! I could sleep and still breathe. Two days later, the respirator was removed from my cubicle. Now I was ready to get out of intensive care and into a regular room.

                                  Fatigue was becoming my enemy. I was exhausted all the time. I knew there was a problem, and Dr Lohmann ordered chest X-rays. I had pneumonia. I sank into despair when the respirator was rolled back into my cubicle-I had come so close to escaping from the ICU. “Just a little touch of staph,” I was told. “Nothing to worry about.”

                                 I hit bottom. Would there ever be an end to this? Would I ever get out of this mechanical horror?

                                  March wore to an end. Outside, spring was in full bloom. Slowly I was weaned from the respirator again. At last the day came. April 17. It was Moving Day! Upstairs to a regular room in intermediate care                                   Charles rolled me out of the door in a wheelchair

A Snug Universe

 “THIS is it, sue, Room 219.” As Charles turned the chair to face me into the room-my room-I saw Mother and Bill waiting. I nearly burst with happiness when I noticed the window next to the bed. Imagine my own window!

                                 That night Bill settled in to sleep on the cough in the room. For the first time in four and a half months, my little universe was quiet, snug and secure.

                                I was tended by my own private nurse – Elaine and Yvonne during the day, Marjean on the week-ends. Our daily routine developed quickly. At seven, when Elaine came on duty, we took care of my medications and breakfast. They still had to go down the tube. Then we went to physiotherapy.

                             After that came lunch , which took forever. Elaine gave me as much as possible from my tray, to force the mouth and throat muscles to work, but it was agonizingly slow. Then back to physiotherapy.

                           As parts of my body began to move, Charles gave me exercises to work on at night.

                           Except for two schedule turns, I usually slept through to morning. I could now lift one elbow a little, so engineer Bill had begun thinking up a new signal. His creation was a switch that attached to the bed’s guardrail near my elbow and was wired into the hospital call button.

                              With a tough of my elbow, the light went on in my room, outside the door and at the desk.

                              One day, despairing of my long and straggly hair, my morning nurse Elaine arranged to have it cut and styled. Charles even showed up to supervise. When the cut was finished, he announced, “Now you have to see how nice you look.”

                               Before I could protest, he turned the chair around and I gazed into a mirror for the first time in five months. My breath stopped. How thin I was! My face gaunt, pulled on one side by wasted muscles, distorted. The ugly NG tube hung out of my left nostril, down below my chain.

                               I tried to lift a hand, wanting to touch, my skin, but nothing moved. It didn’t matter: there was nothing left of the person I remembered.

“Hi, Bill”

 I SPENT two hours each morning and afternoon in physiotherapy. All muscle was gone, all of it. Charles and I had to work to rebuild every one, which meant getting the joints mobilized first.

                            After all these months of paralysis, most of my skeleton was rigid. Calcium deposits had formed in the joints, and they had to be broken loose for me to regain mobility. I would brace myself as Charles shoved against my shoulder. Finally, the arm would go flat. Breaking through each joint produced excruciating pain. Charles pushed my limbs until they wold move no further. Then pushed a little harder.

                                 I tried to keep my emotions in check. But a screaming pain continued tears flowed every day.

                   ON MAY 11, at the end of the afternoon therapy session, Charles pulled me up into a sitting position and set me alongside the table, so I could hang on to the edge and sit alone.

                               “Just one more thing, Sue,” he said His grin grew impish. “I think it’s time we stood you up.”

                                     The table was low enough for my feet to be flat on the floor. Charles put my hands on his shoulders and placed his large, strong hands on my side. “Hold me, Sue, and let’s pull.” I was excited, but not afraid. Slowly, steadily, he stood me up. It was astounding, thrilling. Tears came immediately to my eyes. But I also felt a smile pushing on my lips.

                                       It was only a minute or two before Charles eased me down again, but I had actually stood up for the first time! The therapy staff celebrated. There would be more celebrations: but in between there would be more days of frustration and pain.

                                      On May 12, the tracheotomy tube finally came out. As soon as the little hole in my throat closed up I would be able to talk.       

                                          When that day arrived: after all the months of being unable to speak, I couldn’t think of anything to say. I didn’t even know if my voice would work. Bill stood at the door, waiting.

                                              ‘Hi, Bill,” I finally managed, thrilled to death by the sound. The two of us just grinned and cried. When he was ready to leave, he leaned over to kiss me. “I love you,” I whispered, my heart brimming over.

                                             “Oh, Sue. I’ve been waiting so long to hear you say that.”

First Step

                                  CHARLES. Once my supporter, my friend, now became my taskmaster. One day, he helped me to my feet.

                                        “Okay, Sue, lift your foot and take a step,’ he ordered.

                                  I concentrated on every muscle and joint in my left/leg. Nothing wanted to move. Then, ever so slowly, the foot responded to my commands, It took a step!

                          “Now the other foot, Sue.” Again total concentration. I issued the message to my right foot.

                                   It shuffled only the slightest bit. But it was a step.

                                              “You did it, Sue, you did it!’ Charles said. ‘There are people in this hospital who said you’d never move again. But they were wrong. You’ve just walked!’

                                           Yet with every high, a low always followed. On July 15, after seven and a half months, I felt I was still helpless. In the ICU I had fought fear and anger. Now I battled depression – and the demoralizing pain of therapy.

                                             September came, and with it another milestone; I picked up a fork-with both hands- and put something into my mouth. Soon Marjean found a double-handled cup, and I began drinking unassisted. Then she padded my toothbrush handle so I could grasp it.

                                                Firsts came faster and faster. My first shower was heavenly, as was my first hamburger-a mess, but delicious. I now walked around my hospital floor. The exertion helped build my lungpower, and soon I could make the journey without stopping to rest.                                                    In October I got my first weekend pass-and then another and another. Finally Dr Lohmann decided I could be discharged, but I would require a nurse, five days a week, to handle my personal care and therapy, and to take me to the hospital regularly for physiotherapy. Learning this, Marjean announced that she would be my nurse. I was ready to go home permanently.

An Extraordinary Life

FRIDAY the 13th of November was my lucky day. A huge, lovely cake arrived in my room at noon, and word spread throughout the hospital; after nearly a year, sue was leaving. Staff members swarmed in. I felt blessed and grateful.

                               It was strange as we drove down our street in the last glow of dusk. My first glimpse of home was breathtaking. Now at last I could begin rebuilding my life. This was a night for joy and thanksgiving.

                            SEVEN years after leaving the hospital, I continue to surprise myself with my progress. Today I can use muscles that seemed useless even six weeks ago.

                         When I first arrived home, I was barely walking without crutches. I could not take care of my personal hygiene or dress myself. Like a small child, I was beginning everything anew.

                               The first Sunday I was home, we sent flowers-a token thank you-to our church family. On New Year’s Day, we slipped quietly into the last row of seats, just as the service began, so most of those gathered did not know I was there. When the service ended, the loving excitement of the entire congregation enveloped us. It was another emotional homecoming.

                            By May 1982 I Felt ready to resume control of my life. The time had come to go it alone, without a nurse. I could manoeuvre around the house quite well. And, thanks to Marjean’s training, I could handle much of my own personal care and simple household tasks.

         I still experience some problems with balance. I April 1983, I got over-zealous and stepped on to a kerb without anything to hang on to. Down I went, breaking my elbow. That injury set me back.

                     Even after five years, I could not get up on my knees from the floor and then stand without help. I can do it now, and my balance steadily improves. I can wiggle my toes, but they still do not curl under for balance. I wear simple, plastic leg braces when I’m out, but Charles has assured me that I’ll be able to throw them away as soon as I am able to life my toes and turn them under.

                             I ride an exercise bicycle a kilometer and a half every day. I spend at least 20 minutes on the floor, working my whole body. And often I swim for an hour every evening.

ANOTHER DAY-A NEW LEASE OF LIFE

                     Occasionally I still feel sorry for myself for things I cannot do, but then I remember where I’ve come from. With the help of God, My family, my friends, and the support of an entire church congregation, I am leading a nearly normal life – an extraordinary life!

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SMILE A WHILE

‘I hate to tell you this, but that should be intensive care.’

APPENDIX

The You Tube video below explains the basics of respiratory support using a ventilator.

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