On Death: 1. Hart Proof

This is the first instalment in a series about death. Their purpose is to share my reasoned beliefs and hopefully, offer solace to those who feel torn, afraid or grief-stricken. I want to emphasise my intent is not to challenge someone’s spiritual conviction. Rather, it’s a personal account of how I arrived at my current view and consequent peace of mind. If it offers one person some solace in their time of need then this series has served its purpose.

---

One fateful Tuesday night approximately a year ago, I was watching a show with Jodi (my house-mate and live-in carer/assistant/BFF) as she fed me. Breakfast, lunch and dinner are when we watch a series. Eating takes approximately 30 minutes, and the show can take her attention away from watching me eat with my mouth open. She sits to my right, feeds the fork to my mouth with her dominant right hand while we both face the screen. Because my tongue isn’t powerful enough to turn the chewed food with my lips closed, I need to turn it by eating with my mouth open. Facing the screen also saves her wearing some of the food if I suddenly cough or choke. This is why I won’t eat with a group: hygiene and aesthetic reasons.

Half-way through the meal, I suddenly start to feel slightly faint. Within another minute, I feel like I’m going to soil my pants and pass out.

“Toilet. Now!” I said.

“What’s wrong?” Jodi sees my concern and jumps off her chair. “Jorge, what’s wrong?”

“Toilet. Quick.”

I didn’t know what was happening apart from feeling my blood-pressure take a nosedive. All I kept thinking was that I didn’t want to soil myself on the chair unconscious. If I was going to go, then I was going to go on the toilet. It’s incredible what concerns us in dire straits. If I could get to that toilet in time, I was going to try. But by the time I rolled the few metres to the restroom door, I had deteriorated further. A sheen of cold sweat spread over my body like moss, and I was using every method I knew to remain conscious. I flexed my calf muscles quickly, repetitively but impotently. I laid on my knees and took a few quick deep breaths to bring oxygen to the brain.

“Jorge, you should lay on the bed,” Jodi said in a firm tone. “If you fall, I can’t pick you up.”

She was right about the possibility of falling, but I knew I could make it. I may have been passing out, but I was surprisingly calm and rational.

“No! Toilet now! Quick.”

As she held my wrists, I swung forward and up to a standing position. Quickly leaning onto the door frame for support, I took a few deep, slow breaths and evaluated the 1-metre distance to the toilet seat — no problem, one step at a time. I can step and lean onto the bathroom cabinet then another step to the toilet seat. If I could just stop the walls closing in and rising nausea I’d make it.

“Nearly there,” Jodi said. “You can make it.”

Jodi held my wrists tight and led me to the front of the toilet seat where I faced a wall with a grab rail. She placed my clammy hands on the rail for stability and in one move, pulled my pants and underwear down my legs. This is why I wear elastic-waist pants; they’re easy to remove in a hurry in possible toileting emergencies. Grabbing my right arm and shoulder, she stabilised my descent to the toilet seat. As soon as my skin touched the plastic, I slumped back into the cistern as my head rested on the wall. I felt extremely hot, yet, my profuse sweat felt like ice.

“Oh, my God. Jorge, you’re white as a ghost.”

I thought ghosts were translucent.

“Are you alright?” Jodi looked very concerned.

Did I look as bad as I felt?

“Your lips are white!”

“m..b..ans,” My mouth was dry and sticky. If my lips were white, then there was a severe lack of blood flow to the brain. The only thing that could cause such an unexpected fast drop in blood pressure was a heart event. Did I have a heart attack?

“What? I don’t understand what you’re saying.”

My breathing was becoming increasingly laboured and shallow. I strained with every ounce of strength to stay upright as I felt my eyes roll back in their sockets and back again. Jodi was going in and out of visual focus and the colours were losing their hue. Yet, while all this was escalating, my mind was calm and focused. I can’t explain it.

“am…ben…se,”

Damn this, my tongue’s useless. The words won’t come out, and I’m one syllable away from passing out. One more try.

“AM-BOO-ANSE.”

A heart attack? Where’s the radiating chest, neck or arm pain?

“Ambulance? You want an ambulance?”

“Ye,” I whispered as I slumped to my knees.

“Jorge, get up,”

“No, I’m fine,” I slurred.

I was attempting to bring blood to my head to stop fainting by lowering it. However, I have to be honest. Because I’ve never experienced an event like this, I felt and believed I was going to die right there after I deduced this might be a heart attack. Cardiac problems run in the family. My maternal grandfather died instantly of one while talking on the phone at work. One minute he was chatting cheerfully to someone at the other end of the line, the next he was face down on the concrete. Quick and painless, similar to this.

I’m going to die now.
Dying is so easy.
I’m ready.

Oh Shit! I haven’t finished a living Will or power of attorney. I can’t die yet.

These were my sincere thoughts as I lay on my knees, awaiting my brain to lose consciousness and then my life.

Jodi was on the phone with 000 calmly organising an ambulance to hurry along. I felt very proud of her composure and supportive presence. She never showed panic, only concern. She was following my instructions perfectly. I’ve made her promise repeatedly that unless I was unconscious or completely incapacitated, that she was to follow my instructions to the letter and never betray my wishes. I may be paralysed, but I’m fully autonomous, and I’m going to protect that agency until my last breath. After the phone call, she rechecked me while telling me they’d be a few minutes and proceeded to place cold, wet towels on my face and neck to cool me down.

“Are you alright?” she asked.

“No problem. I’m okay.”

The feeling to go to the toilet subsided uneventfully, and the faintness seemed to be easing.

I should get off this toilet before the paramedics get here. They have enough to deal with.

After a few more minutes, I felt well enough to attempt to get to my chair. I still felt like passing out, but I didn’t feel at death’s door anymore.

“Chair,” I told Jodi.

“Are you sure? Wait for the paramedics; they’ll help you up.”

“Chair. Please.”

Jodi grabbed my arm and pulled me forward while I stood upright, thankful my legs are still unaffected enough to stand. With a quarter spin, I leaned against the wall and locked my knees straight for support. She pulled up my pants, straightened my clothes and grabbed my wrists again for the long three-step journey to my chair.

Once in the chair, I felt myself recuperating as fast as I had deteriorated. It had to be a heart issue affecting blood flow to the brain; perhaps an arrhythmia. I thought it might have been food poisoning at the start. Feeling nauseous in needing the restroom seemed like a possibility. But by the time I sat down, it became apparent its speed and severity were heart-related.

The paramedics wired me to a portable ECG machine and didn’t find the slightest irregularity in the 30 minutes of supervision. Blood-pressure was average, as was my heart-rate, blood-oxygen level and blood sugar. Their conclusion was the same, possibly an irregular heartbeat episode failing to supply enough blood to the brain. They left, and that was that.

Except for one minor thing that was puzzling Jodi: the huge smile and calm plastered across my face.

We both thought I was dying before, because in over a decade with ALS nothing remotely similar to this ever happened. She’s never seen me like this; heck, I haven’t seen myself like this. But why was I so contently calm?

Why wasn’t I concerned?

Why wasn’t I terrified of death?

Stay tuned for the next instalment in this series regarding death.