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

Just A Number.

I’ve learned a lot today. Today was a big day.

I sat in my ophthalmologist’s office and waited for my eyes to dilate. An elderly man – Tom – asked me about my orthotic shoes. He wondered if Medicare paid for them. When I informed him I wasn’t old enough for Medicare, he began a monologue about his insurance. I listened – strictly because I felt the obligation of synchronicity – and my body began to profusely sweat. A thick goo wet my hair and head. Soon I felt too nauseated to concentrate or to participate. I began to pray, “Jesus help me. Oh my God.” And at that moment I didn’t know how I’d endure. The nurse called my name and I stood up and steadied myself. I flattened my shoes and locked my knees. I asked myself how long I’d be able to go on. How long could I tolerate feeling so awful? I asked myself if the side effects superseded the benefits. I don’t know. I don’t have answers.

My light fixture in my dining room didn’t work. I replaced bulbs. But I’m literally in the dark about electrical repair. I asked my buddy Greg if he’d fix it. He said he would so today I went to Menards to buy a new fixture. Menards is a double storied warehouse and the electrical department is on the top floor in the corner. I rode the elevator to the second floor and walked toward the light fixtures. And I felt too weak to walk. I began to pray, “Jesus help me. Please don’t let me die in this store.” I worried who would tell my parents when I didn’t come home. I felt so nauseated, weak, and lightheaded that I sat on the two story stairs until I felt strong enough to walk. People walked around me like I was a drunk. I didn’t care. I felt too sick to care.

I went home and sat on a chair for 90 minutes and tried to restore my strength and settle my stomach.

When my buddy repaired my fixture (it was merely the wrong light bulbs – I had non dimmer bulbs in the sockets and I have a dimmer) I insisted on taking him to supper to repay his kindness. We walked quite slowly into the restaurant. I sat and tried to get strength. And then I knew.

I can’t. I don’t have the strength.

I can’t socialize. I don’t have the strength for conversation. Hell, I’m too tired to listen. How can someone be too exhausted to hear? I don’t know.

My new mantra: “I don’t think I can do this.” I pray it all day long. Sentence after step. “God I don’t think I can do this.”

Tomorrow – heart tests. Monday Cardiologist appointment. Jesus let’s hope they’ll do the procedure and repair me. Soon. I don’t see the electrophysiologist until mid May. Maybe the play after the procedure. We’ll see.

I’ll continue to take the new medicine. It gives me an hour each day to function enough to accomplish my necessary tasks. But this new medicine is hard. It makes me so sick.

Have you ever been too sick to care? Just numb? I’m numb.

I’ve always prided myself on my grit. I’ve always been the one who wouldn’t quit. But today I learned I’m not the same. Will has nothing to do with it. I just don’t think I can do it.

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.

Unbecoming.

 

“I don’t want to become that guy. I don’t.”

“Which guy?”

“Sick guy.”

“I don’t follow.”

“It’s a beautiful day today. I’m glad you moved us outside.”

“You seem to have more energy.”

“I think the new medicine is good. I have a window in the afternoons when I feel as good as I ever did. But then I crash.” He stretched his legs the length of the barren patch in front of the park bench.

“A couple of weeks ago you struggled to talk.”

“True. I wouldn’t mind it so much if this is my future. But the P.A kept telling me the medicine is toxic. That’s the word she chose. Toxic.”

“What did she mean?”

“I haven’t a clue. But I’ll tell you something, she was hot. We have official confirmation that my heart is strong enough for the blood to flow below my waist.”

“Mark …”

“Oh come on Padre. I told you I don’t want to be that guy.”

“Explain that.”

“Sick guy.” He stood up and stared at the trees across the park. “You know what no one ever talks about? How exhausting it is to be around the sick guy.” He turned around and looked at the priest on the bench. “See someone you love gets sick. Really sick. And you care. Because you love them. And the sick becomes everything. Every conversation. Every reference.  Every yard stick.  And then the sick person starts getting sicker and is scared and weaker and starts to vanish. And what you have left is like um,” he struggled for the word until he saw the unraked park, “a fragile leaf left over from the fall. And so you press them into this memory … book … and you suppress how you really feel. And you don’t love them anymore because they aren’t who they were. They’ve been replaced. They’re this vulnerable and usually bitter shell. And you resent the shell because it stole the person you loved and just sort of marks the spot where he was. And the guilt. Well you feel guilty for not loving this living … corpse …like you did. So you chastise yourself for being a dick. But the truth is the person you loved is dead. He died the first time you looked at him and saw he’d been replaced. And all that’s left is guilt and responsibility and burden. And that’s the truth. I’m not saying you don’t still love them but you love the was.” He turned away and faced the swing set across the park. “I’m not becoming sick guy.”

“That’s not entirely true. Love evolves but love is still present.”

“Well, we’ve just have to disagree. Because I’ve obviously thought about this a lot. The other day I noticed I’m becoming sick guy. I’m watching my death.  I’m fucking dying every day. I will not be sick guy. Do you know I’m dying every Goddamned day? Mark the biker. Dead. I started to walk to the corner the other day and I couldn’t. I’m too tired. Remember how I used to walk all the time? Mark the walker is dead. You know how fast I talked. I can’t. Mark the talker is dead. Dead. Even I don’t know what I am anymore. But I know I can’t allow myself to get bitter.”

“You’re not bitter. I’d say you’re …”

He interrupted, “sad. I’m sad.”

“Sadness is a valid emotion.”

He returned and looked him in his eyes. “Good thing because sad’s where I’ve landed.”

He walked beside his friend and held his hand while they watched the ducks waddle along the shore.

Beaten Path

It’s 2:56 am and I can’t sleep. It’s so disquieting listening to one’s own heartbeat in a dark and quiet room. Coupled with the jittery physical sensation caused by my new meds, and I’ve got my personal horror show with a rhythmic soundtrack provided by the erratic metronome of my heart.

Heart failure is a powerless position. I’m a problem solver. So I’m trying to figure out what to do. I guess the power is in compliance.

It’s so odd to realize a day arrives when your body works against you and becomes both the enemy and its torture.

Why post this shit? Because I can’t walk into the street and scream and the jitters are forcing the ejaculation.

And I know I’m running out of time.

Too soon my heart will beat me to death; too soon the sounds of my broken heart will become rote.  How much longer before my heartbreak provides a soundtrack to a beaten path?

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)

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.

Drained

pexels-photo-167704He sat at the center island and watched as she moved through the kitchen. She stood on her toes and reached for a box of cereal. Her stretch made her t-shirt rise above her hips and he lingered on her nude frame below her waist. “I’ve forgotten what a great ass you have.” He reached down and adjusted himself through his boxer briefs.

She turned and looked through him and walked to a cupboard behind his back. “Now you’re interested.”

He sat back and scratched the center of his chest through his t-shirt. “What does that mean?”

She walked to the refrigerator and took out the milk. “That’s the most boring sex I’ve ever had.”

“Okay.”

“Seriously. Could you have been more bored?” She reached for two bowls and put them on the table.

He sat erect and leaned into his elbows until they touched the counter top. “I wasn’t bored.”

She crossed her arms over her chest. “I was.”

He took his hands and put palms down on the counter and used his arms to lift him until he stood straight. “Shit.” He stood still. “I’m not used to these pills. I get so damn dizzy.”

She walked over to a drawer beside the sink. She took two spoons from inside the drawer and turned and put them on the table.

When he felt oriented, he walked out of the room. He closed the bathroom door behind him and stood in front of the sink. He put a hand on each side of the porcelain and looked into the mirror and saw his dulled eyes. They didn’t match his mood. He leaned toward the mirror and dropped his head and looked at the drain. He leaked a sigh and whispered, “fuck” to the middle of the sink. He walked to the toilet, lowered his boxers with his thumb, and looked at the stenciled paint. He pulled his boxers back to their place, flushed, washed his hands, and walked back into her kitchen. “Look.”

She had poured the cereal and the milk and looked up while she chewed.

“This was the first time I had sex since this heart thing started.” He sat down and lifted a spoon. “Is this skim milk?”

“Yes.” She spoke through bites.

He swallowed. “Well, I was worried.”

“Why? Just eat the cereal. You don’t have to drink the milk.”

“No,” he said with a full mouth. He swallowed. “No. I was worried about having a heart attack while we were having sex.”

She sat back and looked at him. “You’ve really changed.”

“Well, this is a new thing to me. I’ve got to get used to it.”

“That’s not what I’m talking about. Even your conversation is tentative. Have sex? Since when did you talk like that?” She spooned another bite. “I don’t like it.”

He sat back on the chair. “Okay look. So I was too cautious. Fine. I get that. I’m sorry. But don’t take it personally. It had nothing to do with you.”

“But that’s the part I don’t like. You walk in here. You’ve gained weight. Okay. And you’ve nervous. That’s obvious. I can understand that. But the part I liked before was that you were the only man I’d ever known who totally lost himself during sex but still concentrated on me. That was the best part. You were like out of control but you knew I was there. Tonight was like neither of us were there.”

He silently sucked in his stomach and tried to roll the roll under itself. “I knew you were there.”

“No you didn’t. You were so careful you barely touched me. I bet you’re not that careful by yourself.”

“Okay you’ve got to understand that I don’t know my limits yet. I don’t know what I can do and what I can’t.” He pushed his bowl away from him. “And mentioning my weight is just goddamned mean.”

“I’m not the kind to be so cautious.”

“I have to be. Couldn’t you have just been nice to me? Would it have hurt you to be kind?”

“Apparently everything is about you getting hurt. I told you you didn’t know I was here.”

“That’s not true.” He felt too tired to fight.

She stood up and took her bowl to her sink. “So that’s it then?”

He stood up. “What?” He rinsed his bowl in the sink and set it on top of hers near the drain.

“You’re going to be cautious?”

“I have to be.”

“Until when? Is there any chance your heart will get better?”

“I don’t know. But I have to be careful. Look where carelessness got me.”

“Well, now you’re just like everyone else.”

“What are you saying? I’m too tired for this.”

“Everyone’s too cautious. Now you’re just another one. I’m going to bed. Just let yourself out.”

He sat down and watched the door swing into place.