I went up to the attic to get something the other day and looked over at the mountain of papers, boxes and manila envelopes that spilled from one corner out into the middle of the room. It was the avoidance pile, the place to which we’ve relegated everything we’ve wanted to save or maybe ought to save or perhaps would enjoy reading again someday. But now it’s thirty years later and we don’t even know what’s in the mountain anymore, much less have any use for the stuff. It’s just been sitting there, growing and growling at us for a very long time.
I decided to purge. At first I was going to just toss it all. But then that same ‘what if there’s something I might want or need’ syndrome took hold and I resigned myself to dig through the intimidating slop.
For the past week I’ve sat on the floor and re-read the pages of my life. It’s mostly been those titillating bank statements from 1983 and of course each and every canceled insurance policy cuz you never know when you might need those again. There were thousands of slips of paper dating back as far as twenty five years ago that we’d kept in case the IRS ever singled us out. Every homework assignment the kids ever did was in there. Not as fascinating as I’d thought they might be all these years later.
Most of the stuff should have been relegated to the shred pile a long time ago, but not all of it. Buried within the layers of useless time keepers were treasures and tid-bits of our life as it has passed through the years. In the middle of the pile was a manila envelope labeled “Donna’s Freelance Writing.” In it was a piece I’d written years ago about my mother and my step-father. The story reminded me of the perspective I always want to have; the one I often write about in this blog. So, I decided to post an excerpt from the story. Even though I wrote it more than twenty years ago, I think it still holds meaning for each of us. The piece is titled The Great Masquerader.
It was six in the morning. The sun spilled through the window and onto the blanket under which Stan lay motionless. At first the light had warmed him, but now it was making him hot. It occurred to him how cruel it was that he could not push the covers back himself, but then he dismissed the thought. It had been years since he could manage even the simplest task and years since he had stopped agonizing over the fact that one of the harshest fates had sought him out. In the quiet stillness of early morning Stan waited for Ellie to wake up and come down to the living room where he now slept in a hospital bed. Ellie could pull the covers back for him.
Stan was forty eight when he was diagnosed in 1973. He and Ellie had been married less than a year at the time. Theirs had been a later-in-life romance that anyone might hope for. Stan was handsome and vibrant. His winning personality was hard to resist and Ellie fell in love quickly. They sang together and held hands and danced. Stan was an excellent dancer. Their days were dotted with long walks on the beach and candlelit dinners by the fire.
Double vision, a slight limp and numbness in his right hand brought Stan to the doctor that first year. Tests were inconclusive. Certain illnesses were eliminated. In the end, he was diagnosed with Multiple Sclerosis, or MS. There was no test to confirm the diagnosis. MS masquerades as other conditions, lurking behind symptoms that could be many other things, but then they’re not and in the end your doctor concludes you have MS. It is a disease of the central nervous system. There are four types and they vary in severity but each of them takes from the patient at least some of what he used to have.The Fast Progressive strain takes it all.
At first Stan and Ellie were hopeful. Odds were, since Stan was a male and already middle aged, his would be a mild case. The only test would be that of time. They had no choice but to see what course the disease would follow. They waited and worried as their assailant worked its vicious way upon their lives. One by one symptoms came and never went. Stan’s case would not be one of the easy ones.
At first he was weak on his right side. Then he couldn’t write. Soon he needed assistance to walk. From a cane he went to a walker; from the walker to a wheelchair. Finally he couldn’t get out of bed. In a very short time the MS had summonsed Stan from the building of his life and taken him down.
The progressive physical debilitation was, in many ways, not as difficult for Stan and Ellie as the emotional and psychological impact. Stan had to quit work, so they could no longer afford their home. They moved to Ellie’s family cottage in the boondocks of New Hampshire. As Stan’s speech became affected and his ability to control bodily functions diminished, it became increasingly awkward to be around him and friends began to drop away. Stan and Ellie felt hurt, then angry, then simply alone.
Stan lost the fighting attitude early on and became consumed by his fear and disappointment. It didn’t take long for depression to set in. Ellie couldn’t get him to do anything for himself or with her and, gradually, the affection between the two lovers began to fade. Eventually, Ellie became little more than a nursemaid whose drudgery consisted of not only her own ablutions each morning but Stan’s as well. After that she cooked for Stan then fed him then hoisted him in the lift so she could change his sheets and dress his bedsores. She counted out his meds and spent hours on the phone with various agencies.
Years passed. During the first nine of them Stan was still angry. The only available target was Ellie. She was healthy and he was not; it wasn’t fair. So he began to resent her, even though she was the one keeping him alive; the one who stood between him and an institution. Eventually, though, even the anger went away and left nothing in its place but the horrible suffering of a man who was locked within himself, unable to move, to speak or to do anything but lie there in contorted pain. It was so difficult to watch, so utterly heart breaking. What must it have been like for Stan as he passed through the countless days that threatened never to end?
In 1988, after fifteen years, Ellie could no longer care for Stan at home and she had to move him to the V.A. Hospital about an hour away. She visited him every day and sat with him as he lay curled in the fetal position. One day she got there and he had died in the night. They said it was heart failure. We always wondered if someone hadn’t put him out of his misery.
Now it’s 2013. As I sit in the attic and look through the envelopes that detail the last thirty years of my life, I rediscover dusty and faded memories. I feel enriched again by the wonderful experiences and relationships that have visited themselves upon me. When I think of Stan, I realize how lucky I am and I hope never to complain about anything again.