You know how people drunk text? (Oh I’ve done that. That’s why I delete an Ex’s number the moment we break up.) But I don’t drink anymore. So I write when I’m filled with emotions. Someone should probably take away my keys. (Is that why they call it a keyboard?) I think I use Facebook wrong. I use it to face my fears. I post to face my facts. Maybe I should’ve kept everything at face value. Doesn’t really matter either way. I thought about the idiom “save face.” Yeah. I’d say it’s time I did that.
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 I asked myself if the side effects superseded the benefits.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.
I write my wounds. Every day.
And people ask me why I do. I don’t know. I just do. And often my words come back to bite my ass. Often I’m still the punchline. And even at this age, it hurts to get punched.
Last week I stood in my kitchen and made a grilled cheese (lent) sandwich with provolone cheese. And I thought, I used to work in a deli. All at once I wanted someone (anyone) to know I had worked in a deli. I wanted someone to be aware of that fact. I didn’t want it to be forgotten. And I know how foolish that is. Who gives a shit? But I fear I’ll be forgotten. And I know it doesn’t matter that I worked in a deli. I knew my lack of proportion. But it’s the fact that’s disproportional; it’s not the fear. And I know that.
And I know I’m not read anymore. But sometimes it matters more it’s in words than whether or not it’s read. So. I’ll blurt without edit.
I had such a lovely weekend. I’ve had a lovely week. I thought today about 55. I’m almost 55 years old. You know what’s great about 55? I’ve learned balance. I can do balance.
Physically the weekend has sucked. The medicine doesn’t seem to be working anymore. I’m weak and I’m having trouble breathing. I’m so nauseous and I’m so lightheaded that I’m having difficulty trusting my actions. But it’s okay. I’m not afraid anymore. My foot is now bleeding from three separate ulcers. I’m using 4×4 gauze pads, gauze, & surgical tape to wrap my foot. It’s okay. I’m not afraid anymore.
I took my parents on a car ride today. I wanted to show them the potential theaters for my play. The theater I had chosen is closing May 17, so I’m searching for a space again. While driving around MPLS I saw so many bicyclists and I started to cry. I’ll never bike again. Biking was huge to me. And I’ll tell you why.
When I was a boy I rejected sports. I saw the cruelty of competition so I stopped competing. It was a very difficult moral decision. It meant I excluded myself from most male activities and consequently I wasn’t included in male friendships. I had a lonely childhood. It was easy to label me gay since I wasn’t like most boys. And homophobia was as prevalent in the 70s as pot. I began to question my masculinity. But not my sexuality. I knew I was straight; I worried I was less a man. Eventually I discovered the joy of companionship with the opposite sex and I’ve spent a huge chunk of my life enjoying the company of women. But I did miss male companionship. As I aged, I developed fruitful male friendships. But there remains a gap in every group. I have very limited knowledge and no talent of sports. So in many ways I can’t participate in the sport of masculine conversation.
Until I bicycled.
I love bicycles. I love the physical challenge and the achievement of the physical activity. And in a very real way – I felt more masculine. I felt more like a man.
So today when I saw the bicyclists, I wept.
I won’t bicycle anymore.
And then I saw my sin. My perspective is wrong. I shouldn’t lament something I can’t do. I should be grateful for something I did. And I silently bowed my head with gratitude for the moments of joy I experienced.
Yes. My foot is bleeding. But you know what? At this very moment I have 7 friendships that are direct descendants of my foot problems. I wouldn’t have met these men or formed these friendships without the trauma to my toes. Now I reject the whole Pollyanna bullshit as unrealistic and simpleminded so I’m not going to claim the friendships were worth the costs of my toes. But I am aware that life is a balance of scales.
I’ve had a great life. I have great friends. I’m grateful for the moments of joy I’ve experienced.
I fell in love today.
I sat on an examining table and I fell in love. She took my vitals and I fell in love with her.
I fall in love every day.
It doesn’t matter. It’s not sexual; it’s emotional. It’s not biological; it’s spiritual.
I fall in love every day.
When someone shares his or her humanity with me, I fall in love.
And it’s not infatuation. I’m no longer overwhelmed by the view. I’m accustomed to seeing a soul. Yet the weight hasn’t lessened. When someone shares a moment of humanity, I fall profoundly in love.
And I don’t fall in love with most people. Most people aren’t willing to share the essence of their souls. Most people are guarded; most people are afraid; most people live closed.
I guard myself from being guarded; I fear that I’m afraid; I know I’m close to being closed. But I take each risk.
Because when our moments of humanity and vulnerability are shared, I feel God. I feel gathered together. I sense the synchronicity of His divinity and I fall in love.
I fall into the love of God.
And hope and love and communion are resurrected from their deaths.
I know that God has come again.
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.
“I don’t want to become that guy. I don’t.”
“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.”
“Oh come on Padre. I told you I don’t want to be that guy.”
“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.
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?
On April 1, 2016 I went with a group of friends to a play. Afterwards, I needed a drink. We went to a bar – Me & Julio (where the pic was taken) and I turned to my friends and said, “Well, I can do that. I’m writing a play.” UNZIPPED burst into being. Within 6 weeks I held auditions. Within 5 months the first performance.
In the last 366 days, here’s what I’ve learned:
I’ve learned I could write a play – a controversial, intense, and consummate work.
I learned I could direct, cast, and produce myself.
I learned that edgy doesn’t really have anything to do with intensity. Edgy is all about creating an edge (a boundary) that defines the limits and the limited. Intensity is all about the courage of the corralled to approach. Intense is all about farthest.
I learned a few people will support you and even less will encourage you. It’s a red light/green light world. Most people will turn their backs and most people will send you back to the base if you get too close to the win. But some people love the edge. They love the rush of the approach and they crave the excitement of the risk of the fall.
In the coming year – I’ll have my play on a stage. I have a man who likes the edge and who thinks my play can move. He’s willing to put his cash on my edge. If my health holds, by autumn we’ll have a run.