The Taste of Air

by Richard Schad

  I miss my old life. I just miss life. Just because I look good does not mean I am good. Everything looks the same. Don’t they know everything has changed?

  I smile a lot these days. I laugh, talk with friends, to my oldest bestest friends who did not ignore me, leave me when one diagnosis followed another and my oxygen levels decreased and my smiles turned to tears and they were still there.

  This is who I am and no amount of make-up will change me. Go if you want to. Leave. You were not there and now I know that. You did not care about me. You cared more about the image of a healthy person who looked so good, whose world had not yet changed.

  It is dizzying, exhausting to be two different people. This is who I am, good days and bad days. Sometimes there will be days that I am funny, that you just cannot believe I am sick. Then the next day I may be that really sick girl who used to be funny. I am doing my best.

  I am trying to be me.

  Love, Karyn

  P.S. Dear People, Just because you cannot see it, does not mean it does not exist. I am not fine, and I am not good, and I am not the same.

  February 4, 2009

  Nails On The Chalkboard

  Of My Soul

  This Side

  Dear Diary,

  People spotted my oxygen tank and nasal cannula. No shortage of awkward conversations in which pity dripped through people’s voices and eyes. They cast their eyes away as though I were the homeless begging for change. They would look, but not see me. Why? My soul was unchanged by my physical decline. Why are they talking to me so slowly and with high-pitched voices? I wonder why they cannot see the pain in my eyes.

  Sadly, they ran their nails over the chalkboard of my soul. They pitied me. They had no compassion, for pity is without any compassion. When you have compassion, all human experiences are possible. There go I, but for the grace of God. Pity is a Fool, and I pity the Fool.

  Each of our experiences is both unique and completely universal. Sickness and disease happen all the time, and it does, until it happens to you, and then it is something altogether different.

  I pity those who lack the compassion to feel what they see, and who do not see. No shred of sympathy, empathy or understanding. Maybe I should speak to them slowly and with a high-pitched voice? Someone needs to write The Idiot’s Guide to LAM.

  Did I tell you about my cousin Rachel, who got LAM and dropped dead less than 2 months later? How long did they give you to live? The awful time questions—how long, how short, how often. What are you so worked up about? Hey, I had a piece of my intestine removed last year and I am just fine. It’s all in your head. It’s the altitude. You just need a hobby. I know exactly what you should do. I know just how you feel. Their words thrown like spears piercing my heart.

  Long shaggy dog stories about someone else’s lung disease, especially one with a tragic ending. I could not get them to listen to me. They hijacked my right to talk about my own personal experience and feelings. Let Rachel and the other shaggy dogs rest in peace.

  Oh, is that all? I thought you had (always in whispered tones) cancer or something. You just have to learn to live with it. You’re just depressed. You just need to reduce stress and make some time for yourself. It’s all in your head, if you just had a positive mental attitude, you would not feel sick. You could get better if you really wanted to. You are so lucky to spend the day in bed. LAM is a blessing in disguise. An oyster needs sand to make a pearl. Sometimes we need to feel worse to get better.

  Talk to me in a normal manner. How’s it going rather than always asking how’s my health or how often do you have to go back to the doctor. Give me the choice of sharing concerns, fears or good news about my condition. Talk to me about the ordinary; it does so matter. I am here. Please remember, I have LAM, I am not LAM. Hear me. Accept all the good and bad about me. I do know the hard part is actually doing it.

  Being able to hear what I want, what I need from you, and to give that, and not to give me what you believe I should want from you. Give me time so you may hear what I am saying. Why are there so many Teflon listeners? What I say just slides right off them. Having people listen instead of telling makes me feel real. Please be there.

  I have learned we can never truly know what will help and what will hurt someone with a disease, so how can I ever know what to say, or ask, or do? I suppose the simple answer is we can’t. My very wise Grandpa Harmon always told me, that there is always an easy solution to every human problem, neat, sensible and wrong. I cannot know what each Lammie and Lungie needs and wants. But I have learned, we can always be sensitive.

  I remember running a nail on your chalkboard when I made an ill-fated comment about the noise of your pulse-dose oxygen in the movie theater. Each time you took a breath, a noise emitted breaking the quiet. I was embarrassed by the sounds and wanted it hushed. What? Did I not want you to go to the movies? Did I not want you to breathe?

  I gave an apology to you. Apologies are given, or are they? I gave an apology, but I was really asking for something; I was asking for your forgiveness, for you to make it okay for me. I know now that apologies are much harder work for the one getting one, than the one giving one. I ask for forgiveness and I am sorry.

  The ignorance of the limitations of life with a chronic illness or disability hurts as much as the actual pain. I have learned I am here for you. I may not know exactly what to say or do, and if I mess up (again), I apologize in advance and I hope you forgive me. But I want you to know how much you mean to me.

  Tell me, “I am so sorry this has happened to you.” Tell me, “If you ever feel like talking, I am here to listen, just listen. Please let me know what I can do to help, and can I drop off dinner for you guys next Tuesday night? Be positive. Tell me I am an inspiration. Tell me, “It is wonderful to see you again.” Tell me that you missed me (and thankfully does not elicit my wanting to bark back, “If you only knew”). Tell me, “I don’t know what to say, except I’m sorry.”

  I have to live my life differently than everyone else around me. I have to think about just getting out of bed. I need to think about my medications. I have to plan my outings around my oxygen. Just so many little things, that normal people do not put much thought into. It is like I am living in a different world than you, and I have different issues, priorities, and a language that only we Lammies and Lungies speak.

  I hate popping pills and people asking me personal health questions that I do not want to answer. I hate living up to other people’s expectations of what being sick is. I hate living up to other people’s expectations of what a healthy person should be. I hate thinking about how or when I might die, because for me, it might be a when day, and not a someday. I hate never feeling good enough, quick enough, pretty enough, or just enough. I hate that one of my husband’s acquaintances referred to me as “damaged goods.” I hate people who complain they envy me because I get to nap all the time. I hate it when they yammer on, making me feel that my being alone is better than this alone feeling I get around those yammerers who don’t have a clue and are being utterly annoying.

  Diary, you know me. I get to pick who knows the real me. I get to pick who to share my soul with. I decide who to let in. You know that I do not want a watered down life.

  I live in two worlds.

  Pity is for lost causes. People, I do not want your pity.

  Karyn

  ICU—Intensive Care for

  Those of Us Waiting

  The Other Side

  I would arrive before 9 each morning when the ICU visiting hours began, placing myself against the far wall, facing the only opening to the world, the door. I had my own little space, parked across from the door to the hallway and the cubicles of the ICU.

  The ICU waiting area is a former storage room, and as such, is a small sitting room, with about 20 chairs. A TV plays on a shelf high in the corner, droning on and on, as the wor
ds in the old magazines blur by.

  The door was my window to the world; I was always looking, always watching the nurses and doctors go past the door. Ich bin ein East Berliner watching that lucky foreigner drive his car through the Brandenburg Gate. What lies on the other side? What is going on with my wife? Is she getting better? What is happening?

  You pick up the phone on the wall by the old battered metal desk in the far corner and tell the charge nurse who answers the phone, whom you want to visit and who you are and then you wait. You want the phone to buzz back quickly, giving you the feeling that all-is-clear. It may be my wife is being visited by a doctor, having a bronch or another procedure or a bath or a million things my mind roams to and then a million more.

  It’s been another hour and no word; that cannot be a good sign. Hurry up and wait; the long anxious watch. The doctors passing the door look weary. How strange that my world has become so small. Watching for a doctor or nurse who is treating my wife going down the hall and cajoling them into an up-date.

  Watching the door was like looking at life through the tiniest of peepholes.

  I am anxious and I pick up the phone again and ask to see my wife.

  Then I wait for the phone to squawk back, to walk through the door, the gate, turn right ten feet and enter the ICU.

  Once I enter the ICU waiting room, nothing else exists. My world became my wife, my patient, and the short intervals I can see her.

  There is no visiting in the normal sense. I am a waiter, not a visitor. I wait for doctors, for news, for a visit, for other family or friends to arrive, wait for phone calls, and wait to, someday, take another full breath. I wait for the speaker by the phone to grant permission to cross the Wall.

  The big lesson of the ICU is just what in life does not matter at all, the lawn getting mowed, where you went to school, what you drive, your credit rating, house size, annual income, clothes and even work. This is a room of absence and no one in ICU talks of these things. Most of what I dealt with as real stops at the door. The ICU is real life, not what I left at home or the office.

  I sit across from people I have never seen before. I have seen race, class, and age differences dissolve instantly. The ICU is filled with a most generous compassion and I have watched people change diapers, go outside to change tires, share food and fears and faith with others who in any other setting might be spurned or shunned.

  That’s the thing about the ICU: I could talk to another person sitting next to me for hours and never know her name, and share my deepest secrets and then never see her again. We in the ICU serve each other. We take messages for each other. We fetch coffee for each other. We go out and buy food for people we have never seen before and will never see again.

  A white dirt-poor woman from the North Carolina outback whose father made hillbilly pop, moonshine, converses easily with a black woman from the projects. I ask where the main surgery waiting area is and one woman says it’s down yonder. I now know how far yonder is. The details of life are left outside the ICU door. There is no color here, no politics, no bias.

  I sit and stare at the vacant metal desk and abandoned phone, waiting for it to chirp back my name.

  In one gasp of air, one lump, one scream, one unexpected bit of blood, one stroke-like episode, priorities change. In a single morning in ICU, watching life drain and change out of someone you love. Will my wife know me? Is she off the vent? Can she move her left side?

  We, the waiters, do not have to pretend all is fine. We can share dark humor. We share wisdom hewed from hard experience. We comfort each other. We help each other and that is a great comfort. We become comfortable with the uncomfortable.

  No one should face the unknown by themselves. That was a great lesson, that I was not alone, that I could lean on others for help, and that I could help others when I felt weak and lost and confused. Maybe there is a dark cloud hanging over my head, but at least it’s shady.

  In the comfort of being together, we sit and talk of trivialities and of life and death. There are shocked looks, tears, laughter at one of my very old jokes. We hold our collective breath, all of us murmuring our prayers. We pray. Silence.

  Everyone is together, each alone with our own thoughts. Compassion is heavy in the air, even heavier than my own. The pain I feel for someone sitting in the ICU room and the other waiters understanding what I am going through. We, who quietly whimper, are newborn puppies finding warmth and security in our proximity.

  People of faith are thankful and offer words of gratitude and encouragement. One older very wise woman, holding her dog-eared Bible, as tears cloud her eyes and rolled down her cheeks, told me that Faith is seeing a rainbow in each tear. She is worrying her husband’s old handkerchief, the initials LG barely readable in the corners, and I clutch her hand, plugging into her lifeline of strength. Her voice so soft, her eyes so very warm, with compassion as her husband of 60 years suffers through his final illness. Nothing is so strong as gentleness, nothing is as gentle as real strength.

  We sit in silence. Cannot silence be just as intimate as talk? Can we not touch sometimes without words? When someone talks, we listen. Listening is a most powerful act of giving. We listen each other into being. There is no reason to suffer alone when we can suffer together.

  I see another patient’s husband, an old friend, come into ICU, “How are you doing today? I know this is hard and I hope the best for you. You are in my thoughts and prayers.” Amen to that child. We hug.

  I give out many hugs. Who would deny the power and grace of another person’s touch? One reaching out to another, affirming the need we all share to have someone declare you are good enough to love. Mom said it best, a hug is the perfect gift—one size fits all and no one minds if you exchange it.

  The narratives of life define the South—they look for a kind ear to talk to, not someone to solve their problems. They want someone who cares enough to give them the time to listen to their story. People here allow the narratives of life to pour out of their souls as freely as sweet tea with a twist of lemon. They talk to each other, not to get to the bottom line but to get to know each other.

  It’s been another hour and no word; that cannot be good sign.

  The phone finally chirps my name.

  Daze Becomes Days

  The Other Side

  Dear Donor,

  Day 3

  I am drifting through breakfast, and I think I am eating. I keep telling myself the episode is merely an obstacle, not a disaster. I do not drink coffee but my insides were churning and I was as jittery as if I had been mainlining java. I am hopeful of some progress and what I could do. I need a quick emotional spackle fix.

  Another long wait in ICU. I am a nervous mother hen on a nest of precious eggs. Will that phone ever ring back? Too bad eating fingernails is not nutritious. Finally, passage to the ICU and to Karyn. I hold Karyn’s left hand in my left hand and this felt good. I asked her to grip my hand. The fish handshake was weak, but it was there. It was there. Usually my reaction to this kind of handshake is ooh, slimy like a fish. But, it was movement, and helped keep me from losing my grip.

  Karyn’s eyes ringed with raccoon-like circles of red-purple, IVs and tubes ran from every opening in her body. Nurses shuffled past. Their soft soled shoes, giving an occasional squeak on the well-scrubbed floor.

  Karyn needed to concentrate, by looking at her left hand, to move her left arm and hand. Her responses were still one word, but clear. No dialogue. Karyn’s short-term memory has been affected. Focus is difficult.

  Karyn can move her toes down. No movement in the left leg. Karyn had pain in her chest, soreness around the incision, and coughing hurts.

  The doctors and nurses and all the other staff studied Karyn’s charts like they were the Dead Sea Scrolls. My mind was tiptoeing through the potential minefields. The doctors were commanders storming the beach at
Normandy with wave after wave after wave of soldiers from pulmonology, surgery, thoracic, anesthesiology, vascular, and pharmacy. Soldier ants on a work detail marched quickly back and forth to her cubicle, doing test after test. People and nurses part for the doctors and lung surgeon like Moses at the Red Sea.

  The halls are awash with good people seeking answers. The current of doctors goes back and forth to her cubicle. People who truly care for my wife, not as a science experiment, not as a piece of machinery, but as a person. I feel their care and concern, and am warmed like my grandmother’s matzah ball soup.

  I tell you, this is tough sledding. One of the hardest parts was I wanted to ask Karyn her opinion. What does she think? What should we do? What about an MRI? What about an MRA? What about the trach? What about the GJ feeding tube? I could not ask her the whats. I have been a husband for so long, that when someone asks me, how I am feeling, I turn to Karyn for the answer.

  I protected Karyn and Karyn protected me, and I could be stronger than I ever was alone. Time to man up Richard; time to have the strength of two.

  A decision was made to trach Karyn, to make it easier to re-vent Karyn if necessary, and to provide suction if needed. The stomach GJ tube will be put in. (I will hear about this—oh, I hope I do, I do) in case there is difficulty in eating and swallowing. Both the trach and GJ tube were not wanted by Karyn, but again, I could not ask her opinion, and I signed off on both. Karyn’s condition made both mandatory. The MRA showed signs in the brain that oxygen was not reaching all areas of the brain. The episode was now called “stroke-like” but not a seizure or a stroke.

  Day 4—Karyn is using a BiPAP this morning, or rather the BiPAP is using her. The BiPAP takes full control of her breathing. This noisy mask machine inflates the lungs and forces out the carbon dioxide from the system. Her ABG, which checks on the blood gases is strong on oxygen. The doctors want as much of the CO2 out as possible as LAM places a high amount of this poison in her system—this is why we breathe, to take in the oxygen and force out the carbon dioxide. This morning, Karyn, even with the mask, showed better recognition. Karyn was able to move her left leg over and gave me a soft hand shake with her left hand. Not going to get very many votes with that wet fish.