REFLECTIONS ON DYING

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There was a time when I was taking twenty-seven pills a day. Every day. Every day was the same tiring routine for me. Twenty seven pills is a lot of pills to take, especially for someone who has always found swallowing pills to be a hard business. I kept them in one of those brightly-colored, plastic pill containers you can buy at any drug store or grocery store with a pharmaceutical aisle. Red, yellow, blue, purple. Four plastic rows of four colors that separated my pill-taking in to four times of the day– morning, noon, supper, and bedtime – although I was not all that prompt about taking them. My nutritionist told me that  missing occasionally was okay, as long as I was making the attempt at taking them, which, of course, gave me an excuse to cheat and sometimes skip a morning or evening.

Evenings were harder for me than mornings. By evening  of any day I am tired and I just want to go to bed.  Pills and the world took a back seat to my desire to just get to sleep and put one more day behind me.

I took this conglomeration of pills because sometime back in the 1980’s, before there was proper screening, I received a pint of infected blood. I went almost twenty years without even knowing about it until one day I decided that as part of my routine yearly physical, I should have the doctor do a complete blood panel.

His follow-up letter was terse and to the point. Something not right with the blood test. An anomaly of some sort. We want you to come in so we can retake your blood and find out what exactly is going on. Something is not right. I didn’t think much of it. I had been healthy for decades, never having had a major surgery or illness that I could remember. Probably nothing.

It turned out to be Hepatitis C.

So why do you take all those pills every day? And what’s this about a “nutritionist?”

The simple fact is that after I did a little online research of the illness, I didn’t like the odds stacked against me with the use of what is termed “conventional medicine.” The standard treatment is a drug – if you can call it that because it is found normally in the body – called Interferon. It is quite expensive, the full spectrum treatment costing around $50,000 for a year’s dosage, but it works only about a third of the time, and makes the person taking it as sick as a dog. I mentioned this last part in the form of a question to the nurse in the office of the gastroenterologist  to whom my family doctor referred my case.

“Oh, yes!” Her smile was cheery. It wasn’t she who was about to enter into a journey of misery.  “We recommend you take your shot on Friday so you can be sick the whole weekend.” Again with the big smile.

I squelched a desire to say something profoundly nasty to her, walked out of the office, and the following week drove to see an old friend at her health food store. Marta listened intently, then described to me the various herbs which would attack the virus and detoxify the liver to help it rejuvenate. It’s a marvelous organ, this giant filter for the body. Cut one in half and it will regenerate the missing half. I had microscopic beasties trying to destroy mine, eating away at the cells, pushing me towards liver failure. It was war, and I in turn declared war upon them and began to supplement myself with all manner of good things which would aid my liver by detoxifying it and helping it regenerate. The only sad part of it all was an elongated and very sad farewell to Yuengling Lager. No sense in helping the little bastards kill me.

A few months later, my family doctor showed me a copy of the letter the gastro doctor had sent to  him. It was filled with all sorts of impressive sounding medical jargon, describing in detail the numbers and factors in my blood test which proved I indeed had contracted Hep C. I found the last summary paragraph to be profoundly irritating. It said something to the effect of  “Mr. Hara has decided to pursue a course of vitamins and supplements by which to treat his infection. We expect to see him when he is finished with his little experiment.”  The tone was unmistakably snotty. I wanted to call him up and tell him what a pretentious ass I thought him to be, but I decided I had better things to do with my life. Never setting foot in his office would be one of them. That was twenty years ago. I’m still alive and doing fairly well. He’s probably dead by now.

I was doing well for a number of years, or so I thought, but a visit last year to my second wife’s gastroenterologist showed that I had progressed from Stage One, where I had been for many years, to Stage Three.  Stage One is the beginning stage. Stage Four is “You need a liver transplant – NOW – or you will be dead within months.”  To my lifelong gratitude – however many years I do have left – Dr. Scudera and his marvelous assistant, Rachel, got me on one of the new medications which do actually effect a cure rather than give false 30% cure-rate hopes.  I am now, as of last month, officially free of the virus.  The next part of this horrid little adventure is to hope that the scarring in my liver does not turn into cancer.  We will have to keep an eye on that every six months, but for now, I am alive, my liver damaged but functioning, and my future much more hopeful.

Back to the pills.  They were a daily reminder of my mortality. None of us likes to think about such grim business as death, but the combination of pills and the general aches and pains of a sixty-five year old body were undeniable reminders that my days are growing shorter.   Four years later now, I am even closer to that day which is marked on God’s celestial calendar as “Edward Hara comes Home today.” I think of it fairly often, the slowing of my energy and numerous problems reminding me that I am not going to live forever. I have already outlived a number of my friends who died too early. We say that – “died too early” – but believing as we claim to that all is in God’s hands, they really died right on time. It was just too early for us, for our friendships, for the time we wanted to spend with them and didn’t get to. Sometimes I see obituary notices for famous people and I am led to think, “Hmmm….he was three years younger than I am.” and it again prods me to double check my will. I believe there are some loose ends that need to be tightened up.

So I spend a lot more time nowadays thinking about death from time to time. What is it going to be like? No one knows. Oh, I’ve heard the “bright light” stories of those who claim to have died and been brought back to life on the operating table. I find them unsatisfactory at best. For one thing, the accounts tend to be contradictory and lean towards the particular religion of the person who “died.” Catholics see the Blessed Virgin Mary. Protestants don’t. Okay, can we get our stories straight here?

I’m embarrassed to admit that I’ve had three members of my immediate family die and I wasn’t there when it happened – by deliberate choice. My father was the first. I laugh at how long he lived – a few months short of ninety– considering how badly he took care of his body as a young man. A medium to heavy regimen of cigars, cigarettes, and booze and he absolutely refused to see a doctor for a yearly checkup. Dad simply had no time for them. He was a stubborn old cuss about it, too, despite my Mom’s nagging him to get a checkup. A bum hip joint finally tightened up to the point that he couldn’t ignore the pain. Old bones grinding together until he could no longer put on his tough guy face and pretend everything  was okay. An operation, a nice, new titanium hip replacement, and even after all that, it was still a chore to get him to see a doctor.

A few years later he wound up in Doctor’s Hospital in Lanham, unable to breath through what was left of his lungs. He was transferred to Georgetown Medical Center where he died one night, alone and without the benefit of anyone being by his bedside. I kept thinking that I should go down and be with him, even though he was unconscious, but the hospital was three hours from where I lived and I couldn’t justify in my mind going there and waiting and waiting and waiting, not knowing how long he would remain. So my father died alone and I stayed in Pennsylvania to take care of my wife, who was also sick.

She was the next to die.

Karen was healthy until the infamous Three Mile Island incident took place. I had the fortune of being out of town on business – a convention in Atlantic City which my employer insisted I attend in order to learn about new products and meet some of the clients we represented. She was alone in the mobile home, only ten miles from the power plant as the reactor melted down and a cloud of radioactive materials was sprayed all over the surrounding landscape. Without a car – Karen never learned to drive and didn’t wish to – she was there for the whole weekend. Two years after that, her thyroid began to act up, followed by adult onset diabetes. The two packs of cigarettes she smoked daily didn’t help either. By the time my father died, Karen was on oxygen, dragging the little green tank around behind her on wheels or using the portable sit-down unit as she sat on the couch watching TV. I spent four years watching her slowly waste away, an ugly business made even worse by spending the last two years in a coma after a stroke took away her ability to move and communicate.

One day, our adult children came to me, before the first of two strokes reduced Karen to an immovable mass of flesh, a person trapped in a world without motion or the ability to communicate anymore. We could all see her going downhill and they sat me down for an important discussion. One by one they agreed that they didn’t want to see Mom put in a nursing home.

“We can all take care of her.”

The mood and the subject were serious but there was upbeat determination. Mom would stay home, surrounded by loving children and husband. That was the plan, the ideal we all thought we could pull off until the social worker who cared for Karen’s medical payments and other issues got wind of our plans. She made us sit down with a home care nurse, who gave us a very detailed explanation of just what it is like to care for someone with her level of illness. We listened, our faces becoming more somber with each detail until we understood that the job would entail far more than we could handle at her level of illness. A few weeks later, the first stroke settled the issue and Karen died at York County Nursing Home on September 26th, 2006. She was fifty-four years old. And again, I was not there for the death of someone in my family.

Nor was I there for my mother’s death. Mom lasted a long time – 97 years to be exact – which is really somewhat amusing to me because all her life she made people think she was constantly on death’s doorstep. I grew up hearing her litany of complaints, her aches and pains, and the constant swirl of doctors for every malady. Maybe my Dad’s refusal to go to any doctor was backlash against it all. My brother took care of her for the last ten years of her life after Dad died, and he deserves a medal of some sort for doing so. Mom was always demanding and insistent on getting her way, but as her mind began to slip into foggy moments of dementia punctuated by semi-lucidness, all the latent impulsiveness came out and was taken out on my brother.

He once told her that her hair appointment had been cancelled and in response she screamed at him and shoved him. Even though she was only about eighty pounds at the time, she almost knocked him over and down the steps to the den because it took him by surprise. During the last six months of her life he called me weekly to unload a torrent of complaints punctuated by angry swearing. He couldn’t afford a nurse round the clock and because of that, he wasn’t sleeping, which made things even worse for him. Every time he would manage to doze off, as if some devilish radar operated in Mom’s mind, she would call him to be picked up and put on the toilet. He screamed, he yelled, he cursed in frustration, yet three months after she died, I spent half an hour on the phone trying to alleviate his guilt for the times he screamed at me, “God, I wish she would just die!”

I saw her the night she died. She barely weighed fifty pounds. At under five feet tall, Mom had never been a large woman to begin with, yet the shrinking of her already tiny frame made her look strangely like a little girl. She appeared not at as a woman who was almost a hundred, but a rather, a five year old child, small, delicate, frail. We talked for around an hour. She asked me about her grandchildren – over and over and over again – because her short term memory was gone. I gave her the same answer each time, kissed her goodnight an hour later, and left her in the care of my brother and the hospice nurse. He called at seven the next morning to tell me that she was gone. And I wasn’t there either.

This has been my relationship with death. I haven’t wanted to see it, stalking, taking people away, making them do the things they do in the last moments of their lives before they give up the ghost. But now it stalks me and I am not only aware of it, I realize that there is no getting away from it. I cannot deny it. Every ache in my body, every time I am sick, which is more frequent now, reminds me that I am not young anymore.

I admit now what you, dear reader, have probably already realized – I’m scared of death. I am embarrassed to say this because I shouldn’t be.  I shouldn’t be because I profess to hold a religious faith which teaches that there is life beyond the grave, and a very beautiful one at that. Nonetheless, it is too….too unknown for me. Will it hurt? What will it feel like? What will it be like to be conscious on the other side of this life? I am a person who likes answers. Mysteries intrigue me, but only because I enjoy figuring them out and coming up with answers, something tangible I can grasp with my understanding. Death evades such clarity and understanding. Death mocks me with unknowingness, a mystery unwelcome by all.  I mean, really, who spends free time pondering death? It is not the invited subject of the cocktail hour or the dinner party. It is the unwelcome one, the dark, slinking visitor who whisks all away without warning. The hope of every man and woman is to go to sleep and simply not awaken, yet all about us we see violent and painful death impose itself upon mankind. The reality of such potential ugliness scares me, and my inability to figure it out, to come up with any form of answer as to what that moment will be like, scares me even more.

What will it be like and when? I don’t know. All I do know is that I am a lot closer to it than I was ten or twenty or thirty years ago. The day continues to move ever closer. Perhaps if I had not been such a coward – if I had taken the time to be with my loved ones – perhaps the mystery would not be so imposing. My daughter, Jennifer, who was with her mom at the moment of death, said that she suddenly sat up, took a breath, and died.  I had a friend do the same thing.  I have read in stories of people who see family members, who see the bright light and feel peace.  Will that be my experience?

I have run from death, and in doing so, have created a terrible mystery for which I have no answer.

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