Dec 9, 2017

The really big question.

So, there’s the friend I’ve spoken of in the past whose spouse went through a most horrible accident. This was now almost 18 months ago and the interim has been far from easy for her.

There a broken nose, broken legs, medically induced coma... hospital to rehab to hospital to ICU to rehab and the cycle just keeps going on. In the meantime, my friend has spared no effort in doing everything in her power to try and ‘fix’ things.

As an observer you always looks at what is going on with the people around you and sometimes put yourself in their position in a better attempt to understand them and their feelings and empathize with what they’re going through.

In the past eighteen months there has been this incessant struggle with infections and ventilators being on and off a breathing tube and being fed through a tube and just a constant struggle. There have been a parade of physical therapists and musical therapists and people to engage someone who hasn’t spoken since the accident.

You hear things and you wonder. The thing that I’ve wondered throughout all of this is that while I admire my friend’s tenacity. would I want to be the patient.

My friend talks about as long as there is life, there should be a battle to preserve it but I have to wonder. In one sense I thought, after everything and with a history of brain injury before this even happened to be a potted plant while going through this (and yes I know that’s more than a little indelicate) might actually be a good thing.

Nothing could possible be worse than awareness.

I know how that feels... I had in my late teens two Grand Mol Seizures in a single day hours apart from each other. I had had an event several months earlier where I nearly lost my life and was seriously injured and at the time of the seizures was working this insane schedule where I had two jobs, one that required me to be up at 2:30 am (or 3:30) to deliver newspapers to home delivery folks after which I would go to a second job working outdoors in the hot summer sun from 6 in the morning until 2:30 or 3 in the afternoon.

Ah to be young!

Anyway, the memory of the first seizure though I was conscious for only a brief portion of it stayed with me for several years afterward and to say it was terrifying would be an understatement. We take for granted (if we’re lucky) that our body will obey our commands, that our brain will remain in charge but to be trapped and aware but not to be in control is truly horrific.

There were a few brief moments before I lost consciousness where I was well aware that my body was not following the commands I was giving it, all the while as I dropped in what seemed like slow motion to the ground all the while turning.

That memory stuck with me for a very long time, hanging there off to the side, being that thing just hovering like a storm cloud because there never really was any determination why it happened (although I think it was the event of the few months earlier working itself out).

The thought of my friend’s spouse being a prisoner in a body seems like the worse punishment I could visit on a hated enemy. Being mindless under those circumstances would be far preferable, ignorance being bliss and all that.

So, it’s been a roller coaster for her but you listen and you wonder sometimes, are you doing this for him or are you doing this for yourself or are you punishing him on some level by not just letting go?

Then I was shown a video taken with a phone of the patient in bed and I really found myself fighting back tears because it almost seemed like there was a person in there and if that was the case I could only think what torture that must be each and every day. Is there pain? What about just being bedridden, not having control over anything? Being poked and prodded, moved and manipulated. How much time do you think of life before? How much time do you wish for an end if there is nothing better in the offing?

This past week my friend fired a music therapist which was well long overdue but there was this back and forth. Not my problem just watching it though was telling. At the end of it, my friend said that she got feedback in the form of blinking, one blink for yes two for no.

Is it real? Is this wishful thinking? Is she holding on for something, anything out of desperation?


And she said, she had asked the questions about firing the music therapist and through the blinking the patient had made the decision (supposing that he could understand, supposing that it wasn’t a reflex).

My thought though was this... if you really believe that he’s in there. If you really believe he’s responding and that’s what you’re telling people to push forward and to use as justification for your actions in keeping the patient alive because there’s a response, have you asked the right question?

The simple question, the important question, the one that matters above everything else?

Have you simple sat down and asked the patient if they want to go on?

I know there was a point, I took care of my father for many years and his health got progressively worse over time. There was a stroke and the recovery but finally there was the big thing that put him in the hospital and right upon the threshold of death’s door.

He didn’t want to go to the hospital and I understood that but there was no other choice. He had to go and honestly in retrospect if he hadn’t he would’ve died that very day.

On the drive to the hospital though we talked, and I pointedly asked him one thing, I said... ‘Tell me what you want me to do.’

I did it because like many of us he didn’t have a plan for these things but the one thing I wanted to be sure of was that if I was in the position where I had to make a choice on his behalf I would follow his wishes.

I went through a year and a half after that where I had to face those choices again and again and I always made sure I did what he wanted. More than anything because it was what was the right thing to do and in retrospect I never felt as if I failed and it’s what I would want someone to do for me but then I wonder are there people who ignore that and can’t let go and in the process cause someone they care about far more pain because they can’t?

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