Recapture

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It’s the helplessness. It’s the less of control.

That’s what disease does. It strips your supremacy. Your body assaults you. Stealth. Without threats. One day you’re a prisoner of a war captured by a new reality: impotence.

One day you can’t. Each day the can’ts accumulate. And soon you’re surrounded by the couldn’ts. I couldn’t for more than a year. I couldn’t ride a bicycle or walk a block or lose the weight or heal the ulcer or breathe without labor or say consecutive sentences or risk the heartbreak or control my coulds.

And my will withered.

This weekend I compelled myself. I willed myself erect. I willed myself engaged. I willed myself to accomplish. I stood up, I spoke up, and I achieved. It was difficult standing on that stage. But I did it. I recovered my remains. And I resurrected my hope.

I resuscitated my dignity. I reclaimed the reign of my dominion of myself.

After a performance, I stood beside one of my closest friends. One of the circle who matter most. And my illness attacked me while I was the most vulnerable. I suffered the third most humiliating moment of my 55 years. I spoke my horror aloud and my friend soothed with a simple, “fuck it.” And at the moment – he rescued my pride. An exhale later I reclaimed my control.

I can’t control the attacks against my heart. Congestive heart failure is an insatiable beast. But I can control my reply.

This weekend I replied.

 

Photo courtesy of www.quora.com

Autumnal Leavings

autumn_leaves_PNG3601Tonight: dress rehearsal for UNZIPPED. And yet, it’s not. I don’t have dress rehearsals anymore. I’m too sick. Now everything is a performance. I’m pushing all my powers to perform my necessary tasks.

Yesterday I had lunch with a buddy. As I walked down the hall to the restaurant I grew afraid. I’d never felt so ill. I slid onto the stool and I steadied myself. I considered what I should do. I knew I should go to the hospital. But – I have a play this week. Too many people are counting on me. Too much money is at stake. Coupled with medical bills? Too much debt to incur. I excused myself and walked to the restroom. I balanced each palm on the porcelain and I looked at myself in the mirror. I prayed aloud, “Please don’t let me die.”

An aside about side effects: now I have short term memory loss and sweats so thick it’s like goo. An actor who’s having trouble with his memory on the eves of his performances. And the script isn’t even  horror. An understudy? I’ve overstudied. I’ll perform. I’ve learned how to endure. I’ve endured the last year of heart aches.

At the sink I splashed the coldest water to cool my clammed skin, and I steadied my feet. I walked back to the restaurant and I resat on the stool.

I’m living with a pulse that hovers in the 40s. I can’t lose weight and my body is weighted with the physical weary until I must pace to advance. Chair to chair. Step to step. Task to task.

I’m pushing myself until October 18. Please God – a successful procedure.

Please God a successful play.

I remind myself of O’Henry. I hope this isn’t my last of my leaves. I’ve always wanted to leave my Mark. I just never thought of it all so literally.

The Selfishness of Sickness

I don’t sleep anymore. I’ve spent the last couple of hours watching YouTube videos proving Amy Schumer steals jokes (I’m so over her but I don’t have the heart to listen to the sadness of The BBC anymore so YouTube is my distraction) and now I’m watching the ceiling and accepting the fact I can’t sleep anymore. It’s so difficult to describe how I feel. It’s so odd to have my entire life change so quickly.

Too quickly to accept.

I went to see a doctor about a cold and he said I had an irregular heartbeat and he ordered tests.

And now I can’t walk to the corner with my sister without stopping every couple of houses to rest. How did that happen? How do I accept that?

How do you accept that one day you can’t ride a bicycle or take a shower without sitting on the edge of the tub to rest or that talking takes the voice control you learned in choir just to hold your voice steady? Do you explain that’s why you go hours each day without spoken words or why you don’t answer your phone? How do you accept that you can’t participate in conversations like you used to?

How do you accept that shopping physically costs or that now you’re so dizzy you worry about the responsibility of driving?

How do you accept the waiting? Waiting to see whether the medicines that make you feel so awful will correct a problem that’s deteriorated over the last couple of months of medicine.

How do you accept can’t? How do you explain the difference between can’t and won’t?

How do you accept the fear? The fear of being forgotten?  The fear of being a burden?

How do you accept the selfishness of sickness? How do you explain you can’t listen because all you hear is your pulse in your head?  How do you explain you can’t feel empathy or sympathy because you’re preoccupied with feeling your heartbeats as they run like small sparks across your chest?  How do you explain that you’re consumed with monitoring the illness that’s consuming all your physical strength?  How do you explain you’re heartless because your heart is less?

How do you accept that bed has become your purgatory? How do you accept that you can’t sleep because of the sober spins? How do you accept the exhaustion of attempting to steady yourself and trying to stop the rapid revolutions? How do you accept that the jitters that rob you of rest and how do you accept the nightly terrors that you may not have rest the rest of your life?

But I’m accepting it. I accept I can’t be impulsive.  Impulse.  Am pulse.  Never considered that connection until I just typed it on my phone.  I can’t be impulsive anymore.  I plan my movements.  Everything is measured.  I sat today and I judged when I should stand up because when I stand I have to steady my stance because I’m so lightheaded.

And I accept that the medicines have changed me.  Constant dizziness and constant nausea are the artifacts.  And I need to accept feeling like I’m drunk may be my new normal.

Anyone who knows me knows i constantly examine my conscience.  It’s what I do.  In my youth I was such a liar that now I’m driven toward authenticity.  How is one authentic when every move is measured and every word is guarded?  I don’t know.

But Mark R. Trost isn’t  Mark R. Trost anymore.

And I have to accept that.  I’ve lost so much in the last couple of months.  In a way I’ve lost my identity.  I’m not a writer anymore.  When you measure each action and reaction you lose your confidence.  I’ve lost my confidence.  The impetus of my writing was my confidence in my enlightenment but now I live in darkness of loss.

So now I ask for acceptance too.  I need people to accept that I’m a shell until I find my emotional fuel again.  I need people to accept that I can’t find confidence right now so they’ve got to accept my fragility. I need people to accept I can’t be lighthearted.  My heart is heavy. I need people to accept I don’t want the responsibility of having an emotional response.  I need people to accept that all of this is incomprehensible to me.  And I’m not used to that.  I’m not accustomed to being confused.

I need people to understand “it could be worse” are rote words to my ears.  No.  To me this can’t be worse.  Heart Failure has stolen my actions and reactions.  My very essence as a man was my immediate emotional, spiritual, and intellectual spontaneity.  I lived in every moment and I lived every moment.  And now that essence is dead.  And I don’t know how to accept that.

Enough

Today I sat on the examining table at my podiatrist’s office as he debrided my foot. I realized that my foot has bled for a couple of days shy of 6 months. My heart doesn’t function well enough to send enough blood to my extremities to heal the wound. And as I prepared to leave his office, I occupied the examining room for too long because I didn’t have enough energy to pull on my socks and put on my shoes. As I struggled, I prayed I had enough control to prevent me from vomiting from weakness. As I walked down the hall to the elevator I worried I didn’t have enough energy to walk to my car. While on the first floor I walked so slowly and I felt so exhausted that I didn’t have enough strength to steady myself. A man was kind enough to offer to get me a wheelchair.

I spent the rest of the day worried about whether or not I had enough money to make the necessary arrangements for the end of my life. Now I’m not really a dramatic man; I’ve very pragmatic. I’m nearly 55 years old. I have a poorly functioning heart- with too many beats, an aortic aneurysm, and an ejection fraction of about 31%.  I know my heart isn’t strong enough to maintain itself with 3 different issues attacking it.  So. With the intention of kindness to my loves, I’ve arrived at the conclusion I haven’t done enough. I need to make final preparations. Just in case.

And I realized my perspective has changed since my diagnosis. I’ve written so much about the can’t and the couldn’t.

But today I realized I think about enough.

All the time.

Have I done enough?

Am I good enough?

Do I have enough faith to endure?

Do I have enough time to fulfill my familial obligations?

Do I have enough resources to maintain a sustainable standard of living?

Does my heart function enough to keep me alive?

Will the new medicine work well enough to avoid future procedures I can’t afford and they don’t perform at my healthcare organization?

Are there enough physicians in my state to perform the new procedure? My doctor thinks there are 2 in Minnesota who perform it.

Have I achieved enough to have a worthy legacy?

Have I been kind enough?

Have I offered enough contrition?

Will I ever get enough sleep?

Do I have enough money to bury myself? Do I have enough money for a coffin and a headstone and a plot? I’m smart enough to know that I don’t have enough time to procrastinate.

Do I have enough courage?

Does God know I’ve had enough?

I don’t know how much more I can take.

I need mercy.

Endings.

20170201_092826“So tell me how this ends.”

“I don’t know what you mean.”

“I want to know the ending.”

“Oh. It won’t be sudden. Your heart will just stop. Like it would for someone elderly.”

“Okay. Because I’m afraid to go to sleep.”

“It won’t be a heart attack.”

“Okay.”

“Anything else?”

“So ten to fifteen years? I’m only 55.”

“Let’s be more optimistic than that.”

“Okay.”

I’ve Contained Myself

playpen_by_britishducksI stood in the hall of the hospital and tried to explain myself to a man who knows me well. “I’m not afraid to die. I’m not.” I protested. “It’s just that everything has been redefined. They’ve put me on a timeline. Now I have boundaries. I’m like a child who’s been put in a playpen. Every time I turn I face a fence.”

That’s how I feel: redefined.

And confined.

But I’m not afraid to die.

I’ve never written about death. I’ve never really thought about it before. But now I think of it every day.

Sunday night I sat in a chair and watched a comedy concert. I think Kathleen Madigan’s comedy is genius. All at once I had a thought: my heart is a time bomb. And I felt panicked. I wait for my heart to fail. I don’t know when; they don’t know when. So I wait.

So I’ve thought about death. A lot.

For the first time, I’ve understood suicide. I’m not suicidal. I’m a Roman Catholic. I believe in heaven, hell, and purgatory. I do. Suicide is not an option to me. But I understand it now. It’s about the waiting. It’s about the desperation. It’s a can in the midst of can’t. It’s difficult to be confined in can’t.

I’ve spent a life battling biology with spirituality. I’ve defined myself as a spiritual being. And now I’m redefined as a biological being. Biology has taken precedence over spirituality. Caring for my body is paramount because my body is happening. The spiritual is pending.

And I know that death is just a biological evolution.

I’m redefined in my relationships. I’m the man in need not the man with resources. And I’m confined by the redefinition.

Biologically my body is failing. I can’t control my body’s reactions. I chose actions. And those chosens begat consequences. I can’t control the biological reactions.

I have to redefine my actions and my essence.

I’m not afraid to die.

I’m afraid I can’t live contained.

(Photo courtesy of BritishDucks)

I Want To Get High

man_on_bench_2_by_mleighs-d4iu2nv

I’m thinking about buying a cane. Sometimes I feel so tired I lose my balance and sometimes I feel so weak my knees collapse. I don’t know if it’s the medicine or my heart. My cardiologist is hoping the medicine corrects my blood flow. Ironically, my blood has flowed through the ulcer on my toe for more than 10 weeks. My podiatrist is hoping the CPAP machine corrects my oxygen flow. I need oxygen in my extremities to heal my foot. I’m hoping for all that too.

But I have other hopes.

Yesterday I waited in line at the pharmacy to pick up my Dad’s medicine. I held myself erect by balancing my palm on the center island. I felt tired. It was a long day. I waited as a woman with three toddlers picked up their prescriptions. Finally they left the line and I advanced to the window. As soon as I started to speak I heard the woman yell, “You know it’s my turn! My cab is here! And you know it’s my turn!” I turned around as her three toddlers circled my feet. “Oh I’m sorry. I didn’t know you were still in line.” I returned to the center island. She ignored me and shouted at the pharmacy tech, “You knew I wasn’t finished! My cab is here! You knew it was my turn!” I apologized again from the center island. At that moment I considered a cane.

And I felt myself hate.

I hated her. I hated her attitude. I hated that she dismissed the apology I struggled to speak. I looked down at her son’s cherubic face and I hated myself for hating.

I will not live hating.

I will not die hating.

I turn on Facebook. It used to be fun. Now it’s all hate.

What happened to, “When they go low, we go high.”

Tonight I saw a friend of mine had liked a post. A man I didn’t know posted a rant. I dislike copy & paste. But these are his words and he can own them: “If someone is going to be a racist douche bag on my page, their employers will hear about it.” What? He’s going to report them? Inform on them? Where is this heading?

All the spite and hate spewed over Nordstroms. We’re closing in on McCarthyism. Guilt by association.

What happened to, “When they go low, we go high.”

I’m a liberal and I reject the hate.

We can debate. We can protest. We can stand. We can defeat. But we can’t hate.

Go high or go it alone.

This week I’ve sat beside three of my closest friends. I don’t need someone to listen to me. I have men who listen to me. I don’t need to have someone understand me. I have men who understand me. My friends have gone high. Tomorrow night I’ll sit beside the fourth friend. I’ve never watched any of the Star Wars films. Tomorrow night we’re ordering pizza and beginning with them in the order they were released.

I don’t like science fiction. But at least good and evil is clearly defined. In our contemporary culture there isn’t a side anymore. It’s all low.

My heart has physically broken but this hate will not beat it dead.

I’m going high.

(Photo courtesy of MLeighS)

Can’t.

Today I learned can’t.

“You’ve changed since you’ve gotten sick.” My sister is my closest friend. We’re too old to edit or soften. We’re matter of fact.

I knew what she meant.

I had just made a comment about the car in front of me. I wanted to leave a lot and a car in front of me took a long time to turn into a lane. He signaled right; he turned left. As he moved forward I noticed his signal continuously blinked right. In our past, I would have raved. I didn’t. I simply said, “It’s an old car. He probably can’t afford to get it fixed.”

I have changed. It’s not that I’m more empathetic.

I’ve accepted a few fundamental facts. I’ve accepted my death. I’ve accepted futility. I’ve accepted inevitability.

coffin-case-c-channel-att-compellers-1I stood in Lunds today near the meat counter. I felt so tired. I felt too tired to walk so I balanced my ass against a cooler coffin in the middle of the lane. I told myself I had to push myself. I’m intolerant of weakness. I’m hardest on myself. When I was a boy I’d run around the periphery of our house. We competed to see who could circle the house the most times. I refused to lose. No matter my exhaustion or the competition, I won. Every time. Every year. I refused to quit. So today when I felt too tired to walk, I chastised myself for my weakness and I stood straight and I tried to push my pace. But I couldn’t. And at the moment I learned can’t.

One of my best friends is an internist. But he’s not my doctor. When I was diagnosed with congestive heart failure, we discussed my health. “Am I going to be able to bike?” I asked. “No.” He was matter of fact. We care too much for each other to edit or soften. “The Metoprolol will stop you.” I told myself he didn’t know me. I told myself I wouldn’t quit.

Won’t quit isn’t can’t. Won’t quit has choices. Can’t does not.

I can’t.

Each day I document my decline. I should quit. My words neither soothe myself nor my reader. I don’t see their point. But I can’t allow myself to quit. Writing is my verb. It’s what I do.

I don’t want to conjugate a new verb. I don’t want to exhaust. I don’t want to tire. I don’t want to gasp. I don’t want to shiver. I don’t want to stop.

I don’t care if I entertain. I care if I endure. I care if I continue. I care if I can continue to provide care.

I don’t care for can’t. But sometimes we can’t.

Today I learned can’t.

Weighted Down

scale-149033_640He reached under his pajamas and scratched an itch just above his right cheek. He kicked off his slippers. He looked at them with disdain. They made him feel old; neuropathy made them necessary. He hooked his thumbs inside the waistband and pushed the flannel pajama pants as he lowered them to the floor. He kicked the reluctant leg off his left foot. He didn’t wear boxers while he slept. He only began wearing clothes to bed when the kids moved in. He reached behind his neck and pulled the white t-shirt off his back and over his head. He dropped it near his feet. Every morning he had the same thought. He thought it was ridiculous to remove a t-shirt by crossing his arms in front of his chest and pulling it off by the waistband. But that’s how they did it in films. Their ridiculousness irritated him. He looked down at his left foot and noticed the big toe that soldiered by itself. Diabetes had stolen its neighboring toes. The toe was wrapped in gauze. He maneuvered the toe and tapped the button that activated the scale. He lifted his right foot and placed it over the silhouette that shaped a foot. “It’s like a chalk mark” he thought. He braced himself with his palm against the bathroom wall and lifted his left foot and placed it on the scale. “Three pounds?” he said aloud. “How the fuck did I gain three pounds in one day?” He braced himself and stepped off the scale. “I went to bed hungry,” he thought. He picked up his clothes and tossed them into the hamper. He bent at his waist and removed the gauze from his toe. He examined it. The ulcer on his toe had smeared a crimson stain. It had leaked on the surgical tape that held the gauze in place. He noticed the cloying odor that wafted from the pad. He tossed the two into the trash. He climbed into the shower, twisted the tap, tested the temperature, and stepped closer to the stream. He palmed the antibiotic soap and began his tasks.

He arched his foot as he walked toward his bed. He kept his toe elevated. The towel around his waist dropped to the floor. He ignored its desertion. He noticed the dried beads of blood that blemished his bed sheet. “Fuck!” he said aloud to an empty room. He pulled the sheets from the bed, crammed the sheets into a bunch, and tossed them into the corner. His foot cramped from maintaining the elevation so he pivoted and sat on the naked mattress. He raised both arms and covered his face with his palms. He gave his face a causal rub and reached behind him to grab the roll of gauze and a roll of tape. He returned and lifted his left leg and crossed it over his right knee. He bent at his waist and examined his toe. He noticed his leg was a bit swollen. He stretched his legs and looked for a parallel. The left leg was swollen. “Fuck!” he said aloud to the empty room. “Goddamn it!” He bent and examined his foot. It wasn’t red. It wasn’t hot. It wasn’t swollen. He knew his foot wasn’t infected. Fourteen years since the surgery, he knew the signs of trauma.

He reached for his phone and located the contact. “Hey Diane. How are you?” He listened while she answered his question. Their routine interactions made their voices and conversations casual and comfortable. “Okay, I’m okay. But. I’m not doing the online report today because this morning I noticed my leg is swollen and I’ve gained three pounds overnight. And you said I should call. Could my symptoms be any more classic? Damn.” He listened while she talked. “Yeah, I have an appointment with the titration nurse tomorrow.” He listened while she talked. “Yeah, I’ll ask her. So should I go buy a diuretic or will she prescribe one?” He listened while she talked. “Tomorrow. I see him in the morning. I’m telling you, I love my podiatrist.” He causally strummed the space of skin over his heart and noticed the hair had begun to resprout. He felt the spikes of the stubble. “Thanks. I’m so glad you guys have this service. I don’t know this stuff yet. You’re a great resource.” They exchanged pleasantries and he ended the call. He leaned back on his bed and stared at the ceiling. “Fuck” he said to the empty room.

Fragility

kettle-bell-592905_640So I stood in the midst of the cardiac rehab gym and I felt sad. The cardiac therapist asked me what was wrong and I told her I just hadn’t processed all of this yet. It’s new to me. And, now it’s part of my every moment life. I looked around the gym and I saw the people gathered in the midst. These are sick people. They look sick. They move with such caution. Fragile. Everything seems fragile. I feel fragile. Fragility doesn’t fit me. I’m large and cumbersome and clumsy.

She attached the monitors and led me to the “sugar station.” She checked my blood sugar. I’d forgotten diabetes. Diabetes seems trivial – nearly a nuisance to me now. She took my blood pressure. “It’s good” she said. I can’t claim a triumph. 4 pills a day make it good. I walked around the periphery for 6 minutes at 2.07 mph. I wore a heart monitor like a sash across my chest. My breath is labored. Fatigue and sorrow make my lungs feel dense and hefty.

When my foot was whittled I saw the slash from the scalpel. I see the scar. I trace it with my index finger each morning to look for the inevitable and the impending.

But with a heart there’s no evidence but fatigue. It’s like it’s not real. I can’t wrap my head around the concept of “heart failure.” I can’t see a report card. I can’t see the branded F under my skin. So I can’t get it inside my head.

She showed me the graph sketched by my heart monitor. It paced my steps around the periphery. “Does my heart still have PVCs?” PVCs. It’s an acronym. I learned it. “Premature ventricular contractions (PVCs) are extra, abnormal heartbeats that begin in one of your heart’s two lower pumping chambers (ventricles). These extra beats disrupt your regular heart rhythm, sometimes causing you to feel a flip-flop or skipped beat in your chest.” Like a conjugated verb in childish babble I use PVCs throughout my appointments. “Does my heart still have PVCs?” I asked. “Oh yes. See?” Her finger traced the jerks on the paper. I thought the 4 pills fixed it. I can’t see a heal because I can’t see the hurt. I take her words for it. Like a reader filled with kindergarten words I know the vocabulary. Heart Failure. I say words I can’t understand. My mind rejects the concepts. I’m a man of strong faith. I’ve moved mountains. But I can’t move “heart failure” from concept to concrete. I’m failing to grasp it all.

I walked around the room. I wonder if anyone will remember me. Like a mantra I asked myself that question through my day and into my nights. I’m hurrying to get my play into print. I want all my words in existence. Whether or not they’re read – they’ll be. Birthed.

I’m afraid of “unfinished.” Words, thoughts, emotions. I want it all marked.

I’ve spent my life standing beside a moral ruler. I measured myself each minute. Now I walk on a finite timeline. I hate the hopscotch. My heart is skipping and pushing my pace. I don’t want to pass go yet. It’s too early for home.

“Why do you put such personal things on Facebook? I don’t understand why you do it.” He said. I don’t know. I thought we were friends? So many emotions and fears and hurts unsaid. Unrevealed. Unfinished. Unpolished. I ejaculate my emotions without edit or aim.

Today I felt sad. Because today I saw the scars and the wounds and the failures. They gathered in the midst. They looked so sick. They moved with such caution. Everything seemed so fragile. I felt fragile.

Fragility fits me.