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
Tonight: 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.
I just had a conversation with the nurse who’s taking care of me. I’m very open in my life so people share with me. She’s very sick. I won’t reveal her illness. But it’s severe. We talked about two things. We talked about having an illness that isn’t noticeable. The wound nurse treated my foot ulcer last night. It’s an open bleeding sore. It’s obvious. But when you have an illness someone can’t see, it’s dismissed. We talked about not wanting sympathy – merely wanting acknowledgement. I told her that I’ve lost most of my friends since I’ve been sick. I didn’t know why. And then she told me. I love she had my answer. “People don’t want the emotional responsibility of you.” I love that. So true.
And then we talked about hatred. I’ve noticed there’s an undercurrent of snide and snippy in conversations. I feel like people are ready to pounce. I had a conversation with a buddy the other day. As I spoke I felt like he snatched the words from my air. It was nearly violent. And the nurse and I talked about it. She feels it too.
Lately I feel sad and bitter and hopeless and full of hate. That’s not like me. That’s not who I am. I need to change that. I won’t let my soul become wounded. And I can’t inflict my sadness and hopelessness on others. So. Hopefully the docs will be able to adjust my meds to a reasonable and livable baseline. I’m going to concentrate on my play. And I’m going to tuck my writing aside and not gush until I’m certain I can control the flow.
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.
“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.”
“So ten to fifteen years? I’m only 55.”
“Let’s be more optimistic than that.”
An IV bag dripped into the crook of my left arm. Or my right. I don’t remember. I remember the afraid. Ablation. I mulled the word through my thoughts. Ablation. Isn’t that a Church word? Latin isn’t catalogued in my mind like it was in my past. Away. Something about away. His name was Trevor. Kind and gentle. He talked to me as he prepped. I asked if I could raise my arm. He said I couldn’t. I told him I just wanted to make the Sign of the Cross. I’d be awake during the procedure. I wanted to pray my rosary. I made the Sign of my Faith on the roof of my mouth with my tongue. A technician above my head told me he’d say the prayer for me. “In nomine Patris, et Filii, et Spiritus Sancti. Amen,” he recited. I listened for the pitch of ridicule. Absent. The technician is too young for the Latin to be loaded in readiness. “Were you in the seminary?” I asked. “No. Just a lot of years in Catholic schools.” Trevor raised his voice, “I know the Hail Mary in Spanish.” I turned my head to my right and looked into his eyes. “8 years in a Catholic school in San Diego,” he offered. I listened to him pray and recognized the words from Spanish 3. “San Diego? Why are you here?” I asked because the day was cold; why would anyone be here without purpose. “The obvious reason.” We laughed. “A woman,” I said. We laughed. I watched Trevor as he negotiated the electric pink razor over my chest and abdomen. Prepped from thighs to collarbone. The tufts of hair waved and swayed beneath the V of his scrub top. Trevor doesn’t manscape. I don’t either. This was only the second time. And neither time had I held the razor. The monitor said the ablation wasn’t necessary. The PVCs (premature ventricular contractions) are controlled by the medicines. Trevor pulled out the tubes. I pulled on my clothes. I waited the required thirty minutes and my sister drove me home.
I stood in front of the bathroom sink and pulled the tape from my arm. The bandaid was stained with a dot from my dried blood. I looked into the mirror and saw my smoothly patched chest. Clumps of hair lined the surfaces outside my nipples. I didn’t recognize myself. My body looked featureless and soft and absent of color. Like alabaster from some Sherwin-Williams collection. Freshly stirred. Smooth. I felt embarrassed. Feminine. Perverse. The opposite of clean. Not clean shaven. I didn’t recognize myself. I had a habit. Since college. Or before. I habitually rubbed the space of skin that cocooned my heart when I thought. I strummed the space with a rhythm that echoed a flamenco beat. Rapid. Too rhythmic to be a tick. I leaned into the mirror. My belly met the porcelain. I looked into my eyes and rubbed my heart. My palm grazed. Cold. Clammy. Like touching the unresponsive skin of a woman. I pulled my hand away.
I thought of her. I remembered our game. A clawed bathtub sat on a cracked tiled floor haloed by a spackled baseboard. The ceiling dampened and stained by the absence of a fan. “Let me shave your legs!” she giggled. It was a new tease for her. We were young. Sex was as much about the new as it was the desired. Once she had painted my toes; shaved legs wasn’t a leap. In the dead of winter – only the two of us would know of our game. I allowed two inches up my thigh. “Stop.” I didn’t demand; she didn’t insist. “How about this little part here?” She plucked the patch in the center of my chest. I had been bullied as a boy. Hair on my chest was an accomplishment. A proof of my masculinity. I spent my youth in the era of the hirsute hero. Tom Selleck didn’t shave; I didn’t want to return to the prepubescent; I didn’t want to return to the pursuit of a woman. I returned the razor. There wasn’t much to shear. It was gone with a couple of whisks.
I stepped out of the shower and grabbed a towel. As I dried my body I saw the stripes. Shaven from grin to groin. I looked centered but I don’t feel centered. I didn’t recognize myself. No ablation but no solution. My heart was broken. I felt vulnerable and weak and out of control.
I stood and stomped my feet to warm myself. I pushed pleasantries from my face and tried to be upbeat despite the excessive random heartbeats. An insult was hurled; the target was absent. Usually I raised a defense but I remained silent. I felt weak and vulnerable and unable to raise my confidence. A young man raised a rebuttal. I admired his risked. It wasn’t his crowd; he wasn’t our age. Yet we shared the same sex and sentiment. Soon I became the punchline. An insult aimed at my heart. I lacked the confidence to defend myself. My pride was soft and fleshy and pliable. He raised my refute. I silently stood back. I recognized myself in his deed. He reminded me we’re men.
I sat on a bench inside the store. I wanted to catch my breath; I hadn’t. I asked the man to pack the bags as lightly as possible. “I have a bad heart,” I apologized. I felt embarrassed and emasculated. “I’m not a man anymore.” I told myself. He packed less than twenty items in more than three sacks. “I’ll carry them for you,” he said. “Thank you. I’m so embarrassed,” I whispered. He walked alongside me as we walked to my car parked in the handicap space. I didn’t look handicapped. I’m embarrassed. But it’s too far to walk. As we walked to my car he told me his story. A car accident. A tailgate. He was animated and although he struggled to speak my language, his patter was brisk and energized. I listened and returned his passion. He felt outraged and relieved to hear my echo. He shook my hand and closed my trunk. We both smiled with the joy of our communion. I watched as he walked back into the store and recognized myself in his gait.
So 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.