The Taste of Air

by Richard Schad

  What would help, would be some sort of break? A short recess? But there are no breaks in LAM world. Being a LAMMIE is hard work. I’m on the job 24/7. I am tired, physically tired, mentally tired. I don’t get weekends off or holidays off. If I don’t feel like it physically, I live with it mentally. Having LAM just plum tuckers me out; it wears down my soul.

  LAM is all–consuming fatigue, bone-deep, non-negotiable, elusive and ever-present. Sometimes I try to fight it and plow my way through, but usually try as I might, the fatigue is larger than I am. It is not sleepiness; it is exhaustion. I remind myself I am working harder just to be alive than most people ever work in their whole life while doing things; just staying alive is all-consuming. Brushing my teeth makes my heart race at 150 beats a minute. Tethered to an oxygen tube connected to a tank in our utility room, my umbilicus. Trudging upstairs with my tank, I have to stop every three steps up the stairs to our bedroom. The muscles in my arms and legs screaming for oxygen. I am suffocating. Will I always feel like I am walking through mud?

  LAM is drowning in slow motion. Each time I stopped on the stairs, I gasped for breath, felt woozy, and ever-so-tired, and out of breath. I can’t get enough air. I can no longer taste the air. If only wishes could come true, my lungs wouldn’t ache as if all the space inside them is used up.

  Climbing to the second floor is like Mount Everest for me. My lungs feel like they’ll burst. My mobility has been stolen. If I leave my glasses upstairs when I come downstairs in the morning, they stay there until my husband comes home. I only have enough oomph to make it up the stairs once a day.

  One day I was climbing mountains in Utah, and now I am suffocating. Lung disease has drank away muscles on my bones. My lung scans look like a little kid had been set free with a can of black paint inside my lungs.

  I look into the mirror unable to recognize the person I once was. A short walk from the bedroom to the bathroom leaves me panting, grabbing onto the counter to catch my breath. The light above the mirror shines on my face, pale and sunken with fatigue. Dark circles surround my eyes like runny mascara.

  I tell myself in the mirror that no matter how each day goes, I win, the LAM wins, or it’s a draw. I can get through it, for another day. I am after all a LAMMIE.

  People treat me differently, like LAM is contagious, like I have been hit by a whole ton of bad luck and they don’t want it dumped on them. LAM isn’t contagious, but attitudes surely are. My LAM forced me to make a decision whether to live in fear for the rest of my life, or embrace the life I have. I chose to embrace life, spar with the demon, and live as best as I can.

  I can choose to give in to depression, or I can say, this is my life and I’m going to live it as best I can. Life just doesn’t wait. If I stand still, life passes me by, and it may be too late.

  LAM is a future that is uncertain and difficult. There are options in fighting LAM, but going it alone is not one of them. LAM is an unchartered road, and who knows where it will take me. There is but one certainty; that I cannot get through it alone. I need others and they need me. In the darkness of the dark, my sister LAMMIES and the LAM Foundation brought me hope and in the world of LAMMIES, running at the speed of life, that’s a very, very big thing. LAMMIES and the LAM Foundation are my cushioning like I am inside a big bouncy house, and no matter how hard I hit the wall, I’ll just rebound.

  LAM changed my calendar. I go by days, and I take them one day at a time. Everything changed that one day, the day I figured out there was exactly enough time for all the important things in my life. I do not live my life worrying about the “What Ifs” for if I did that, I would never enjoy the “What’s Happenings.”

  I am conscious of the passing of time, the turning of the wheel. After all, time is so very precious to all us LAMMIES. It is our currency. This oxygen tank on my back and the cannulas in my nose, make people stare and children rant, will buy me more time. What more do I need to hear?

  LAM made me realize how precious each day can be and how important it is to appreciate them all. That does not mean that every day is going to be a good day and when I say I try to live each day to the fullest, that can mean just about anything. Sometimes just making it downstairs to the chair is enough to make it a good day. So I guess today was a good day.

  Sometimes, I feel I need to say something, each day, something worthwhile. But sometimes, all I have really to say is, “Hey made it through another day.” That’s not very profound or even thoughtful, but it is the over-riding truth of the day. Even though I know the beast of LAM is lurking near me all the time, today belonged to me, not the Beast. Today is my day. How I love to say today.

  To love a LAMMIE, my husband, I know, is in turn to feel sad, frightened, concerned, angry, lost, and often helpless, and you do all this for the most part silently. Does it help you to know that I understand this? My fighting LAM is like a giant game of Mother May I—it sometimes seems as if I take one step forward, only to take two steps back. I get out of breath and become bluer than normal, not that it’s normal to turn blue, but for me, it’s normal. Ah, wouldn’t it be great to go back to my old normal, not LAM normal, for a little while?

  Do the people who know I have LAM ever forget? How do others look at me? And when they do, is the LAM all they see? Do they look at me like I’m the bearded lady in the circus? Am I LAM girl? I am the trapeze artist in pink tights holding the spotlight above the crowd. Am I like the kids in high school known by one single, dominant feature? The Tall Guy, the Brain, the Jock, the Fat Girl. Do they ever see me the way I used to be, just a normal person? Do we ever see ourselves the way we used to? Can we ever step back into our own lives, even for a short time? My mind may let me, but my body has a habit of reminding me that just is not the case. Normal Karyn is something I was; but that is over.

  I know that I was careless with life. I walked around in a mirage of certainty, but everything is uncertain and fleeting and fragile. I wonder to myself all the time if I can ever get back the “me” that I once had. As I travel down the road, the experiences change me without me even knowing it until suddenly I see a reflection of myself and I don’t realize it’s me I am seeing. Maybe the new normal is better than the old normal, because now I truly know that each day is so very important, and how much I appreciate all the good days and the oh-so-good-moments.

  LAM altered my body, my mind, my feelings, my expectations, my dreams. Altered but not destroyed. The Road Not Taken has become the Road Taken.

  I heard a person today wishing for some excitement in their boring lives. Now sometimes I wish for a boring life. Sometimes it takes something like this to let you know how wonderful a normal life, a boring life is. Sometimes I hear the clock ticking down on my life. This new normal, sometimes it stinks. But I have the air freshener out. There is no normal after diagnosis. Perhaps there never was.

  I may look the same, I may sound the same. I do wake up every morning knowing that I have been given another day and sometimes that’s just enough.

  I would love not to be breathless. I do remember what it felt like to run and play and climb and hike. I miss my old normal, my new normal is something I do the best I can with each day. I guess a part of my old normal was living with a sense of security that I never had a right to. LAM stole a part of my life I will never get back. LAM stole control over my life. I was the master of my own identity, master no longer. Maybe I was just arrogant in thinking I was in control.

  LAM is not punishment for my cheating on that US History test in the 11th grade. LAM is an indiscriminate killer and LAM just does not care who you are, or what you have done, whether you are a good person or a bad person, or I suspect a little bit of both. LAM comes when it wants to—maybe that is why it just seems so darn cruel.

  LAM does not care who you are. LAM does not care if you are young and pregnant. LAM does not care if you are poor or wealthy. LAM does not care if you are black or white or bro
wn or pink. LAM does not care. It’s up to us to care.

  I do get angry. God, do I get angry. Those feelings of “It’s just not fair” or “Why me” come welling up inside. Who or what do I get angry at? The LAM does not care. Anger is so darn satisfying that you can forget it’s actually useless. Although it would be fun to think the little germy cells could feel my anger. I think more often than not, I feel frustrated. I can’t do the things I used to do—I feel crappy and my body has changed, my life has changed, and it just shouldn’t be this way but it is. It is, and anger or frustration, sadly do not help much.

  I do struggle with the whys in life. Why her? Why him? Why me? I know there’s no good answer. I get so darn frustrated with the things that are out of my control, and I wonder why people do not deal with the things they can control.

  LAM came knocking. Didn’t want it, but it barged in, uninvited, unwelcome. Maybe there was a why and maybe not. It didn’t really matter. Today I breathe and I am living with, not dying of LAM, even though my lungs are an absence, empty as a zero, a spot of nothing in the air.

  I have LAM but I never forget that LAM does not have me. I live for the day, the moment and the fact that I am here today and that bus did not hit me while crossing the street.

  I treasure that what is now will never be again.

  I am a LAMMIE, and I made it through today. Let’s see what tomorrow will be like,

  Karyn

  February 1, 2009

  BUT YOU LOOK SO GOOD

  This Side

  Some people had a hard time dealing with Karyn’s illness as she became more frail, so they opted to stay away. People did not know what to say or do, or how to act, so they avoided Karyn. Our world sadly does not want to deal with sickness. The rules change when you have a chronic illness. You are an outsider to the healthy world, an offensive reminder of the ugly underbelly of life.

  Some people avoid disease; discourage disease, as if it were shameful. For them, it was easier to pretend her disease and her deteriorating health did not exist. These people internalized their air-brushed version of Karyn’s reality. They pretended not to see what they saw. They remained convinced that the best policy was to treat disease and Karyn like a stray dog, as long as you did not make eye contact, the dog, Karyn, the disease would eventually go away.

  When people found out about Karyn’s medical condition, they often said, “BUT YOU LOOK SO GOOD.” I was never sure what they meant. I assume part of it has to do with confusion. They did not understand how someone that looks good can be sick because they were so focused on visual cues; whether Karyn looked pale or gray or tired. Some people were so focused on the visual cues that they thought Karyn was exaggerating about her condition, “Well if I cannot see it, then it must not exist.” “You must be getting better.” As both of us said many times, “LAM is a progressive chronic disease—you never get better, you only get worse.”

  So many people said to me “She looks so good.” She is not, but I repeat it back to them, that “Yes, she does look good.” This is how some deal with sickness. They establish a new standard and embrace it with manufactured cheer, as if the epic nature of life and death, of LAM, of lung disease, could be thwarted with a veneer of breezy compliments and light conversation.

  Dear Diary,

  I know what it feels like to be a stranger in a strange land, to have everyone walking quiet steps around me, some investigating, some ignoring my every move. The first are seeking signs of familiarity, the second are so scared of what my experience might reveal about themselves, they prefer to keep their eyes shut. They would look at me like they were a child, and I was a Stranger, Capital S, offering candy.

  Why do people want to know what I feel and then tell me that is not how I feel. I do not feel good. I know a tension can exist between how I feel and how sick I appear in the eyes of others. When people want to believe I am healthy, then logically, sort of, that becomes how I think I should feel. That constant tension is emotionally draining. I am forced to live a lie to make others feel better.

  The most insincere question in the English language is the simple query, how are you?

  With me, the word fine frequently exploded before I even heard the question mark. Who wants to be bothered? Illness may be a part of my life, but as with death, we too often fail to make our peace. My chronic condition became intensely private as I realized others did not really want to hear the truth and I know it is emotionally easier for someone to look at me as healthy, that I am holding my own.

  For many of us in the sick world, You Look So Good, that tongue-in-cheek sentiment, is all too familiar. The meaning clear, really, you cannot look so good and be so sick. My illness is hidden. My LAM is like an iceberg, everything under the surface. Just because you cannot see it, does not make it non-existent or untrue. What did you expect? A cadaver? You look good. Why, thank you, so do a lot of serial killers. I am sick. I am not dead. I am here. I am still here. I am trying to live one day at a time. Know this, I miss my old life. I just miss life. I hate relying on other people when I used to be so independent. Just because I look good does not mean I feel good.

  What people may not appreciate is how long it took me to look like this. How much effort just to run a comb through my hair or brush my teeth, and that I had to stop taking showers because I did not have the strength. (Yes, I do bathe). Or the effort just to wash my hair in order to keep up that pleasant façade of normalcy.

  Sometimes, “You look so good” makes me want to slap them. Maybe that’s good, the assurance that the whole world does not immediately see what my problems are. How good do I look? Distractingly, unbelievably good. It’s called Sephora, honey. If you were told of all my health problems and limits, you too, would immediately take one look at me and blurt out, but Karyn you look so good. See? Everyone says it. I guess I cannot fault them, after all the people in my life must care about me, otherwise they would not keep asking me how I am doing.

  Each time I see friends they always say, How are you feeling? You look good. Before I got LAM, no one ever told me I looked good.

  Or when someone asks how I am feeling and I tell them I feel like total crap and they respond, “Well, you look good.” I am like, that really does not make me feel any better or change the fact that I feel like I am gonna puke on your face right now. Good, because if I looked like I feel like, it would scare you to death.

  But You Look So Good is, I know sometimes a way of saying “I do not believe you are sick”. I know my disease is invisible. But I am not. I am not a book to be judged by its cover. I appreciate your concern, I really do, but sometimes, I wish my condition showed like a broken arm in a cast. I am not normal and I just want to be normal again. I want my upside-down world turned right. Do not cheer me up if I am having a bad day. I am entitled to it. Don’t say, well at least you look good, unless you want a metal canister of oxygen hurled at your head.

  You should see my CT scans for the last 10 years. Hey that’s it, I will start carrying wallet-size photos of my CT scans! I can whip them out with my other photos. This is my husband Richard, my grandchild Avah, my dogs Bo and Jake, and this is my LAM.

  Like anything, there is a positive side to having an invisible illness. It’s up to me how much I divulge as to how I am feeling. That is a definite plus. Some days, I just do not feel like dealing with it, you know. Other days when my closest friends surround me, I feel more at ease to talk at length about my stupid disease. Sometimes I focus less on what people say (that I look so good), and focus more on helping them understand my disease.

  I tried to explain to others that LAM made me really tired, but they thought I was being overly dramatic. You Look So Good may be meant as a compliment, but for those of us dealing with the extreme fatigue, and the plethora of emotions that come with a chronic disease, the comment falls short of the support I need. I face it, that my family and friends want to be helpfu
l. I get it. But the longer I am sick, the more angry and frustrated they feel. That’s just the way people approach illness. After all, I know most people get sick, then they get better. Once I was diagnosed with LAM, my friends and loved ones expected me to be treated and then get well. When this did not happen, I think they felt frustrated and angry—quite similar to the feelings I was experiencing.

  My disease is unpredictable. I have LAM; it’s a fact of life for me and I am learning to live with it, but I just wish my insides felt as good as my outside looks.

  I wish I could tell you all this and more. I think the illusions are easier for you to live with. Let’s make a deal and you can pretend I am always healthy and I can pretend I am always healthy and happy. I am sure it would work for a while. But it would really be work. Do you really care how I am feeling when you ask? There are so many things I wish people knew about me, but I won’t say because you do not ask, and when you do, you are not truly listening.

  A person approaches me and says But You Look so Good. As soon as I have an audience, the act starts. I’ve studied the lines of what I’m supposed to say, I’m doing fine or okay or some days are better than others, or as well as can be expected. Finally, I would say, “I’m great.” I hate letting people see the effects of my disease. I do not care that they know I am sick, I just do not want them to have to see it or deal with it. I act like I do not care, but I do. I act like I am not scared, but I am. Pay no attention to the woman behind the smile.

  I have to live my life differently from everyone else around me. I have to think about just getting out of bed. I need to think about having enough oxygen while doing errands; that normal people do not put much thought into. I worry I will leave my oxygen tank on when I am not using it, and it will be empty when I need it.