May 25, 2015

I just Want to Live & not have to live Heroically.


I had given my husband a massage and it turned out not to have done him much good.

By the time we went to bed about an hour later, he was still in pain both physically and emotionally.

I just wish I could turn over,” he uttered.

He was on his stomach holding himself up by his elbows—he was too weak to lower his weight fully onto the bed or move himself into another position. Finally he gave up, saying that he would just flop over onto his back.

I was sitting under the covers in the bed beside him, reading. He preferred that I pay him no attention when he was struggling like that, and that was what I was doing. Not paying attention. Or, I should say, that was what I looked like I was doing.

The fact was, I always paid attention. No matter what he said. I had to. He needed help and he needed support and he didn’t know how much he needed it, or didn’t admit to how much he needed it, but I did know and I hadn’t gotten to the point yet where knowing it was a burden for me.

I’m f*&king exhausted,” he spit out at the ceiling. “F*&king exhausted.”

The next morning, when I moved over next to him in the bed he turned over to his left side to cuddle up behind me but it didn’t work. He couldn’t take the pain in his shoulder.

I moved away.

Let me lay on your shoulder while you lay on your back,” I suggested. He rolled onto his back as if his entire body was pushing through cement.

He had watched a college basketball game a few nights before and during the game his team had pulled ahead and then dropped behind then pulled ahead again. In the end they lost the game.

I feel just like I’m the team in that game,” he said, lying there looking at the ceiling. “Like I’m pulling ahead and falling behind and like ultimately, I’m really gonna lose the game.”

His analogy was perfect, for both him and for me. It was exactly why I didn’t watch college basketball— the pulling ahead and falling behind only to lose the game was getting to be too similar to real life.

I just want to be an ordinary guy instead of one who has to conquer the buttons on his shirt every morning,” he complained. “I’m tired of having to allow an extra hour to get dressed instead of being able to just get up and get going. I wanna play a game in which nobody keeps score instead of this f*&king Parkinson’s Disease game that I can’t ever really win.”

My husband’s admissions of exhaustion had been occurring more frequently over the previous several weeks. His defense against the disease that threatened to overtake him, his having to “do battle with it” and his exhaustion had been topics he had brought up several times. I had taken his positive attitude for granted back when he still had it. I didn’t take into account that to remain positive in the face of a brain disease that threatened to engulf your every movement required concentration and steely vigilance. I didn’t take into account that it was exhausting for him.

Eventually, my husband would decide to go on the drugs that had been developed for Parkinson’s disease. Eventually his life would improve somewhat. He would drive again—short distances. Turn over in bed again—at least once a night. Get dressed and go out again—so long as I shaved him and buttoned his buttons. He would watch basketball again without feeling like he was always on the losing team.

I just want to live,” he would finally say, “not have to live heroically.”

It wouldn’t be until after he and I separated almost a decade later that I would realize that over the course of those terrible years of struggle, all those years in which I focused all my attention on him and on his illness or his wellness I too was playing a game that I wasn’t going to win.

It wouldn’t be until after we separated that I would realize that I too was exhausted. I was exhausted from trying to hang onto the picture in my mind of the man he had used to be while keeping the picture in my mind of the man he would become from crowding it out. I was exhausted from the concentration and steely vigilance and sheer physical endurance it took to take care of him, to give him his daily massage treatments, to shave him, bathe him, listen to him, help him grieve and accept what had happened to him, all the while ignoring that, in a way, it had happened to me as well.

It wouldn’t be until after we separated that I would realize that I deserved the luxury of just living life—without having to save him from his and that I would be able to say to my self the very same words he had once said.

I just want to live, and not have to live heroically.”


Relephant Reads:

An Open Letter From Someone Living with Chronic Illness.

10 Life Lessons Learned from a Chronic Illness.


Author: Carmelene Siani

Editor: Alli Sarazen

Photo: jeronimo sanz/Flickr

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