A Better Writer Than Me..Sorry...I

One of my brother's friends and co-writers kept bugging him to “write what you know about.” This dictum supposedly allows one to truly put down on paper the depths of your heart and soul.

 

“Ken, write about your disease!” He was advised.

 

My brother suffered from an Edwardian etiquette that would force him to put his troubles aside for others, including terminal illness. Bothering others with your own problems was NOT allowed. If you want to get a bird's eye view on his personality, think of Niles Crane from the show Fraiser. That was my brother in spades (minus the cockatoo). 

The following was his final piece before he died and satisfied his friend about “writing what you know about.”

 

I warn you now. What comes gets disgusting, at times sad, bleak and extremely personal. I read his story at the publishers before it went to print. I did not know the real depth he managed to hide the trials he undergone. I knew what crap he had to deal with but he managed to keep the worst within himself so well.

*****

From the East Side Monthly/Providence Monthly, December 2003.

 

Withering Heights

 

A kind, gentle creative Spirit Succumbs to Disease.

 

Ken Mahan was a talented musician and writer who worked for the past eight years as a member of the United Way marketing team here on the East Side, as well as a columnist for this paper but regularly for our sister publication Providence Monthly. Just this month, Ken lost his twenty year battle with the debilitating disease known as cystic fibrosis. What follows is a journal Ken kept to document his final thoughts, frustrations and hopes during the last few months. Perhaps one of the kindest and most sensitive individuals many of us have ever met, Ken's insights and humor remained intact to the end and despite this harrowing ordeal.

PLEASE STOP ME FROM DISAPPEARING IN MY OWN CLOTHES!

“Not again” I whisper in exhaustion, watching gobs of phlegm streaked heavy with blood sliding around then disappearing down the drain in the bathroom sink. I had coughed deeply, sending needles of pain through my inflamed lungs . The blood means my lungs are infected again. It is a cold morning and I am trying to get myself ready for work.

 

I feel sick, but usually I drag myself through work and other activities. Sometimes, as a way to keep moving forward, I am needlessly harsh with myself. I will tell myself that life is about suffering anyway, and if I feel sick, unhappy and unfulfilled, then the least I can do is to keep my mouth shut and not burden others with it. I generally try to avoid the subject of my illness altogether, unless I am cornered into talking about it. I am often fearful that over time I would just sound like someone who complains too much.

 

Alone in the kitchen, with the sunlight glaring at me through the window, I feel like crying as I open the prescription bottles of antibiotics. I am so tired of taking them repeatedly for weeks on end. The Cipro and Dicloxacilin eventually control the infection, but in the meantime, they give me fatigue, diarrhea and nausea. I can sense the antibiotics while they are in my system. I feel like I've been lowered into a vat and immersed in some kind of nagging chemicals that put my in a wearing state of suspense, making me tired but not letting me sleep peacefully.

 

I am thin. A side effect of the antibiotics is that sometimes food seems unpalatable. A ham sandwich tastes like it has gone bad, while a meatball sub has a very strong taste of iron. I feel less inclined to eat, and I lose weight. On this particular day, I am five foot ten and 117 pounds. In a mirror, my arms are slender and, I have to admit, more feminine looking than masculine. My stomach is flat and the outline of my ribcage is easily visible. I feel ashamed.

 

There are enzyme pills I take to help my body absorb nutrients. Each day, I am supposed to take 30 of them with each meal or snack. As I walk toward the bathroom, I am seized by a coughing fit and I have to stop until it passes. Staircases and hills make me huff and puff from shortness of breath.

 

I fear my physical life is becoming increasingly restricted. Several of my neighbors are elderly people; they walk slowly, their movements are gentle, and their presence suggests a kind fragility. Although I am just 44, I feel at times that I am prematurely turning into one of them.

 

At times, the stress of chronic sickness seems to reduce me to a small boy who understandably wants to be comforted, and who cannot fathom why he is continually being punished. Illness can make you earnestly hope that there indeed is a merciful God who hears you and might deliver you from suffering. A protracted illness also tends to put pressure on whatever your particular neurosis might be, in my case, tendencies toward unfair self criticism and depression. It often takes a concerted effort to keep those destructive urges at bay.

On some very trying days, however, when the illness has been wearing on me, I sometimes slide into tormenting myself with thoughts of shameful inadequacy. An unassuming, mild-mannered man, I worry that I am merely timid, weak, fearful, and have accomplished little in life. Looking back, I tend to dismiss the good things I have done as inconsequential, and instead I see many instances of procrastination, negative thinking, getting discouraged, and not doing enough to fight back against my fears.

 

Friends meanwhile seem to lead more full, healthier lives, they ask for what they want, they work through their fears, they achieve goals, and they find a reasonable degree of happiness. When illness has exhausted me physically and depression has gotten the better of me for a time, I want to lay my head on someone's shoulder and say, “Please, I don't want to be sick anymore. If I did anything wrong or I'm just a failure, I'm so sorry. I didn't mean to be. I never wanted to hurt anybody, or bother anyone. I am so sorry for being what I am, but please let me not be sick anymore. Please let me stop coughing. Please let me stop gasping for air. Please make my chest stop hurting. Please stop me from disappearing in my own clothes.”

 

I breathe in and out quickly, trying to get enough air. My chest rises and falls. I sit on the bed and try to calm myself. I see the red digits on the clock. In a few minutes, I will have to drive to work.

 

When I arrive at the workplace, I park my car. Taking small steps as I cross the parking lot, I hope that none of my co-workers will appear and want to chat with me as we walk inside, because I can barely talk. Once inside, I lean on a railing for a few minutes. I get to my desk finally and I collapse into my chair. I am momentarily relieved, but I did not know that things were about to take a turn for the worse.

SERVING TIME IN SOLITARY

We all expect some suffering in life, whether it is a physical ailment like a sprained ankle or external difficulty like a broken window. There is pain or hardship, some application or remedy, and then relief and a reassuring sense of having some control over one's destiny. Chronic illness, however, does not relent, and can begin to feel like a life sentence imposed for some terrible personal flaw or wrongdoing. Not being able to get enough air is a panicky, frightening feeling, and it is particularly so when you are isolated, far from friends and familiar things. In that hierarchy of human needs, being deprived of air trumps any other concern. Air must be restored.

 

One afternoon while walking along Hope Street in Providence, for no apparent reason, I could not seem to inhale. I felt that the hand of God had reached down from the sky to block my windpipe. In the midst of that calm, pleasant, languid summer day, people meandered on Hope, drove their cars, and went about their proverbial business unaware that the slender middle-aged man with the dark blond hair and the blue eyes was strangling to death in the middle of the sidewalk.

 

After some coughing, I got some air finally. With some other interruptions of shortness of breath, it took me an hour to take a 30 minute walk. I thought about calling someone to give me a ride, but felt too ridiculous. “Listen, if you're not too busy, could you give me a ride for about three blocks? Otherwise it's going to take me the rest of my life to get to Rochambeau Ave.”

 

Another day at home, some phlegm is stuck in my chest and I try to cough it out, but it seems intractable. As I continue to cough, my chest begins to feel inflamed; each additional cough feels like quick slash of a razor. Suddenly my face is terribly warm, I seem to be just barely getting enough air, and I am very scared. I wonder if I should call 911. In a way, what scares me the most is that I am alone, with no soothing voice near or hand gently clasping mine. I would never want to die like this, by myself in an empty house. I wonder if I should call a friend, if just the sound of a concerned, familiar voice would calm me. I finally try a dose of Pulmozyme, a mucus thinning aerosol that is used in a nebulizer, a small air compressor that turns liquid drugs into a vapor I can use. At first, I can barely inhale it. My heart is beating quickly.

 

It's getting better now, it's getting better now. I gently repeat in my mind, hoping to make it come true. Shortly, I manage to cough out the phlegm. The coughing can be a terrible paradox. My body induces spastic coughing fits because it is trying to expel the junk in my lungs, but the coughing itself, which goes outward, makes it difficult to inhale, and I frantically suck bits of air between coughs. I involuntary jerk back and forth, as some demon takes possession of my body.

A MERE BAGEL

Lately, I cannot seem to walk very far without pausing to rest and catch my breath. I had often had trouble hauling myself up inclines and hills, but this is happening now in my office or on a level sidewalk, places where it should be fairly easy to walk.

 

The Daily Bread Cafe is just over a block away from my workplace at United Way, the corner of Wayland and Waterman. I cannot make the distance anymore without stopping. I have certain strategic points I use. On the corner of Medway street is a public trash can on which I can lean on for a few minutes, odd as it may look to a passerby. A funeral home has a nice low stone wall where I can sit. I suppose from a certain point of view, there is something ironic about frequenting the funeral home like it is some kind of idyllic park bench on Blackstone Blvd.

 

One cold, raw day, I made the trudge to Daily Bread with great difficulty. The weather was foul, but I felt the need to escape, at least temporarily the office's sterile cubicles, hallways, and fluorescent lights. Thus I braved the raging elements in quest of a bagel or muffin. My breathing was labored as I walked through the cold little bullets of rain and endless wind. A mere bagel seems hardly worth the stress of this simple outing is giving me, but for years I have dragged myself forward, perhaps desperately than doggedly, and I am afraid that if I relent I will somehow finally lose control of my life.

 

When I arrive at the cafe, I enter, relieved to be in it's warm, cozy environs, but as I look at the staff behind the counter, I realize that I am so out of breath that I cannot talk. For the moment, I sit at a nearby table to collect myself. I am breathing heavily, my jacket is slick and sagging with cold dampness. My eyes are watering. On my table I have nothing, of course, because I haven't ordered anything.

 

“Here, take this,” says a man about 40 years old. He drops a dollar on the table in front of me. “Get yourself a cup of coffee,” he says helpfully.

 

Because of my haggard appearance, he thinks I am a homeless man. After being confused for a moment, I hand the dollar back to him. “No, no, I have money,” I say. He believes me and accepts it.

 

I live in a modest suburban home in Pawtucket. I am far from homeless, but apparently I can look pale, gaunt and distraught enough to cause someone to think that I am homeless. When I finally calm down, I order my damned bagel.

THE SMOKING GUN

I was not diagnosed with cystic fibrosis until I was 25, which is unusual in that most people are diagnosed as children. As a youth, my symptoms were perhaps not as pronounced, or they were dismissed as the usual cycle of colds and flu that children experience. I forever, though, seemed to have colds.

 

Years later, my mother told me that a pediatrician had suspected I had respiratory problems and told her and my father to take me to a specialist, presumably a pulmonary doctor. They chose not to do so, and when I asked my mother why they made this decision. “I don't know,” she said.

 

“You don't know?” I asked incredulously. “What do you mean, you don't know?”

 

“I don't know” she responded.

 

I was not angry or upset, but I was perplexed. Perhaps they feared a specialist was too much money.

 

Whatever concerns my parents may have had about respiratory problems, vanished into the thin air, it seemed, as they proceeded to turn our house in the 1960's into a veritable gas chamber with cigarette smoke. Sitting at the kitchen table each night, my parents puffed on Newports, their carcinogen delivery system of choice. They struck matches from cardboard matchbooks with cheerful little advertisements for the Old Stone Bank and the Checker Club restaurant. The matches flared, then gave a hot, bright orange glow to the end of a fresh cigarette. Stinking ashtrays were chock full of butts and dirty ashes. I recall one ashtray that was sculpted in the likeness of a lovely, yellow flower. It seemed strange to me to make something so nice for the express purpose of defiling it with disgusting cigarette butts, the filter ends damp with saliva.

 

As the plumes of smoke rose and turned lazily, the kitchen ceiling gradually took on a sick, brownish hue. In summer, some clean air came through the screen door, but in the predominately cold New England weather, our doors and windows were naturally closed most of the time, trapping the smoke, and encouraging it to creep around the walls and the ceilings like malevolent, wispy vipers.

 

This was the air I breathed for years. Second hand smoke was my constant companion. Once again, I am not so much angry now, but saddened that everyone's health was compromised for the sake of sucking on several thousand cigarettes over the course of however many years my parents did so. To be fair, I am really not sure if the smoking had that much effect on my lungs, but it certainly could not have helped matters.

 

I am sure of some other things, however. Every morning, my father would awaken and launch into a hacking cough that you could hear up and down the our street. This is no joke as my childhood friends tell me they could hear it. He was an executive at a savings and loan, and in his considered medical opinion, he did not have a problem with smoking. He attributed his orgy of coughing to a dreaded condition known as “post nasal drip,” i.e. mucous moving from the sinuses the back of the throat. They only treatment for post nasal drip was Dristan, an over the counter drug always at the ready in our medicine cabinet. All the Dristan in the world, however, did not seem to stem that morning ritual of labored, ragged and sharp coughing fits.

 

When I worked briefly at the savings and loan as a teenager, I saw he had a good sized mound of cigarette butts on his desk as well. It seemed the only time he did not smoke was when he was asleep. Perhaps even then he dreamed pleasantly about lighting a Newport and taking a nice, long drag.

 

At 46, my father developed pneumonia, slumped then crashed onto our kitchen table with the stained ceiling above him and died on a bleak February day. As a teenager, I did not appreciate the thought that 46 is far too young to die like that.

 

At 65, my mother, though she had finally quit smoking a few years earlier, developed emphysema, a painful constriction of the airways that keeps you from exerting yourself for lack of air. It is a slow, maddening disease. Watching someone die from emphysema is like witnessing a crucifixion. The person is still alive, clinging to live, but you know it is simply a matter of grueling time before the inevitable occurs. She was bed ridden and had hospice care for about a month, until she, too, died on a bleak day in February.

 

It is not unusual to bury your parents, on the contrary, it would seem the natural order of things, but there is something disturbing about watching them die unnecessarily from a mundane vice. I am fortunate, I do not smoke, not because I have some great moral rectitude that forbids it, rather because I do not like it. Perhaps I got enough of it as a child. Nowadays it does not seem exotic or hip to me. I never preach at anyone, but when I see smokers, I feel the urge to ask them if they ever imagined what it is like to be gasping for air in a hospital bed. I meanwhile at 44 am wrestling with what I have been told is end-stage cystic fibrosis. Perhaps it is stubborn denial, but somehow I still think I will live for years, in spit of what my doctor calls the “disease process,” i.e. the gradual damage happening to my lungs as infections occur. It would be nice to get past 46 and at least outlive my father, so to speak.

 

MUCOUS WAS MY FRIEND

On a practical level, cystic fibrosis is all about living with mucous and lots of it. There is an ongoing need to expel it, a need that becomes particularly crucial when an infection causes even more mucous to accumulate, threatening to block your ability to inhale air. As a youth, long before I knew I had cystic fibrosis, mucous was my friend, one might say, a sort of amusing plaything.

 

During a certain phase of their development, spitting is extremely important to boys, either as an act of aggression, a way to mark territory or some odd attempt to look cool. It is not uncommon for boys to have spitting contests for distance, or to while away the hours spitting at a wall. Because my mucous was unnaturally thick, it had more mass and was easier to pitch forward with greater force for longer distances. It is easier to throw a golf ball than a cotton ball because the golf ball has greater mass. Due to this scientific principle, I was able to distinguish myself by employing my mucous as a weapon of sorts, inhaling deeply and blasting the gobs as far as possible. There was also a small thrill when the gunk would land with an actual audible slap against a wall or other surface, during that blissful period in a boy's life when anything gross and disgusting could not be more enjoyable. The other boy's mere saliva was paltry in competition to my mucous. They spat a few feet while I launched veritable intercontinental ballistic missiles that cruised through the air for an appreciable time before it splattered with great effect on the pavement.

 

According to a sort of unwritten Geneva Convention, we did not spit on each other generally, but wherever there are weapons, of course, things can unexpectedly go awry. One afternoon at our neighborhood hangout at a substation behind a shopping plaza, most of the gang were not present. It was only myself and Ellen Harris. We were not particularly found of one another, nor were we very mature about dealing with the opposite sex. Ellen stood sullenly on one side of the substation and I on the other, unable to see her. After a while, out of sheer boredom, I decided to see how far I could spit straight up into the air. With a hearty thrust, I blasted a glob of mucous surprisingly high into the air. Rather than go straight up and down, however, it rather described a parabolic arch, hurtling downward toward the other side of the substation. A heart rending scream rang out. Ellen had been hit. She might have cried “Medic!” Instead asserted angrily, “I'm going to get my brother to kick your ass!” For my own part, I was initially horrified, but then rapidly the humor of the episode overtook everything and I laughed. Fortunately, Ellen never made good on her threat, or perhaps her brother did not think spitting on his sister was any great infraction.

FOLLWING DOCTORS ORDERS

The staff at the cystic fibrosis clinic at Rhode Island Hospital are very patient and helpful. Dr. Donat is very knowledgeable, thorough man with a slightly whimsical bedside manner. Pam, a nurse, is very efficient and kind-hearted. Stephanie is a nutritionist and has a charming German accent. She quietly radiates iron will.

 

“You will have peanut butter and crackers for a mid-afternoon snack, yes?”

 

Replying anything other than “yes” to her seems unthinkable.

 

Their initial assessment is that I need to gain weight and follow a regimen of medications so as to make myself a good candidate for a lung transplant. Cystic fibrosis is making my lungs deteriorate. I very much hope to get a lung transplant. They give me loads of milkshakes, vitamins and enzymes to get me stared.

 

I did well at first, but there is a very old saying, “The spirit is willing but Kenneth R. Mahan is weak” or something to that effect. Partly out of sloth and partly depression, my compliance with the regimen became inconsistent.

 

At the same time, the pronounced fatigue that was making me cling to trash cans on my way to the Daily Bread was getting worse. At my desk at work, it was difficult to hold my head up. I would retreat to a men's room that had a small couch and sit with my head in my hands, wondering how I could be continually be so tired. Moving around the office, I kept an eye out for empty chairs where I could sit and collect myself before making that final 75 foot trek back to my desk.

 

I went to see my doctor, unsure if he could really do anything about this problem. To my surprise, he quickly concluded that the time had come to put me on oxygen 24 hours a day. I was perpetually tired simply because my lungs, damaged by years of infections and pneumonias, were no longer absorbing enough oxygen from the ordinary air. For the foreseeable future, I would be unable to work.

 

I look at the cool, grey sky, my lungs burning and I beg forgiveness, for a chance to redeem myself and end the roiling pain in my chest.

Ken died several days later, on December 18^th, leaving behind an army of friends and writing colleagues.

*****

The last time I read this article was nine years ago. I found it the other day while digging through a drawer fishing for some batteries. Once again, perspective rears it's wise head. As I re-read this, I didn't think of Ken, but of myself. Aren't I a selfish bastard?  The person I was then, nine years ago, is a bit different than the one today.   It's been nine years, so this story of his reads different to me.  

You get older, you learn about yourself more and more. There is a clarity that comes with age and it advances always. Though in my case, I tend to need certain mileposts to make me aware, like the re-read of the the story above.