Day Seven

I wish that I could get some kind of perspective on all of this.  I know that in some ways, it’s too soon.  Or maybe impossible, because there’s been so much.  But I sit here, and I can’t bring anything into focus.  I can’t feel the bad; I can’t feel the good.  I can’t imagine how we got here.  I’m trying to remember the times that were happy and hopeful, but it’s so, so hard.  

Things were best when it was just the two of us.  That’s the ultimate truth.  When it was just us, there were fewer problems, and, in a way, we were the best we could ever be together.  And maybe if the illness hadn’t taken over… illness and age and blood sugar and the long-term effects of carrying that kind of weight around.  Maybe, just maybe, we could have made things work.  But the deck was so stacked against him, against both of us.  I can’t get in touch with the anger, but it’s there.  Anger at fate, at karma, at my own stupidity, at Michael for not being able to make positive change, for not being willing to accept any advice from anyone when he could have, and then blaming me for not being able to help him.  I say that, and it breaks my heart, because it seems so unfair to him. 

Oh, Michael.  I am so sad for you.  And so angry for you.  And so sad and angry for me.  And Jonathan and Caitlin and my mother and for everyone touched by this.

It will be three weeks tomorrow.

He used to say, when I would worry about things between us, “it’s not that fragile.”  And it never was.  And it isn’t now.  It’s a depth of love that is beyond all the awful things that happened, all the ways in which things didn’t work, all the ways in which we hurt each other, all the ways in which we let each other down.  It’s there, that cool, still river, and my hope is that somewhere that Michael-consciousness is understanding this.  Because if there’s somewhere to be going later, I’ll be looking for him.

Day Five

There was a time when I believed that this would all work.  Or I thought I did.

It’s easy to look back and imagine rosy things, a time when everything was perfect.  It’s not that there weren’t ever moments like that.  But they were moments.

And even before Michael came here, there were doubts.  Or at least a hell of a lot of foreshadowing of things to come.  I looked at the things that I’d written in the months before Michael came here.  The paragraphs are sad, and they show so many of the things that would be problems later.  Then we called it dissociation.  Now… I wonder now if he was having some kind of porphyria spells long before he ever came here.  The physical symptoms, the weakness… those things first occurred in 2007, although it would be a long time before any of it was ever put together.  But maybe the mental symptoms, some of them, came long before.  It’s possible, although it wouldn’t change the dissociative aspects.  No one will ever know, of course.  More idle speculation.

But I see how unhappy I was so much of the time then… plus also the moments when it would seem perfect, when he would make one of those statement that would just make my heart melt.  “Let’s make everything like you imagine it.”  Because he’d mean those things, and the way that he’d say it… I’d believe him, right up to the very end.  He’d say, “everything will be all right.”  And I’d believe him.  I always wanted to believe him. 

I am so sad.  And I miss him so much.  Not the Michael of the last year, but the Michael of the past, and it breaks my heart… everything that happened, especially the last year, and I wonder endlessly if there was something more that I could have done, something that I could have done to reclaim that old Michael.  He’s right, in a way, that I abandoned him, because I couldn’t bear it.  I couldn’t bear seeing what he’d become, knowing what was going to happen one way or another.  I just couldn’t stand it.  So a lot of the time, I took my head and my heart somewhere else.

But Michael, I am so sorry.  So sorry that there wasn’t a magical key that made it all work, that there wasn’t something that I could do.  Sorry that you felt that I failed you.  Sorry that life handed you one raw deal after another.  And handed it to me, too, to us.  There is so much of me that will always belong to you, whether you realized that or not.

Day Four

When my grandmother died, I was miserable.  But she was in her 90s, and it wasn’t exactly unexpected.  Losing her was, in a way, losing my childhood, my last safe place.

When my uncle died, I was heartbroken.  I loved him so much, and I never knew how to be close to him.

When my other uncle died… honestly, I felt, right or wrong, that he’d abandoned me long ago.  So on some level, I mourned that loss long before.

When my mother died, I was devastated.  And disbelieving.  And, more than anything, angry.  I’m still angry. 

This time around, I’m just numb.  Numb with occasional spells of weeping.

I miss him.  And I don’t.  I wish it were one thing or the other.  There’s not much of anything in the last year and a half that I miss.  But I miss so much before that.  Lying in bed playing Scrabble, doing crosswords, being silly with laughter, and just lying there holding his hand.  Sleeping all night with our hands together.  Talking and talking, when we used to talk about something besides disease and death.  The jokes that only the two of us would ever understand.  All the years and all the history.  And the commitment. 

But it all went so wrong.  So wrong that I can mourn the beginning, the man, the love, but at the same time… 

Michael, my love, I am not sorry that you are free.  I am not sorry that I am free, even though I have no idea what to do with my freedom.  You and I will never be free of each other, in a larger sense, and I would never want to be.  But the things that we did to each other at the end.  These things I cannot miss.  I would never in a million years want to hurt you.  I know that you would say the same thing.  But I’ve never even imagined such constant pain.

I don’t want to do that anymore.  I don’t want to do it with anyone, ever again.  I’m not sure that I’ll ever begin to get over it.  

I want your arms around me.  But on the other hand, I wanted that all the time when you were here, and mostly it didn’t happen then, either.

Day Three

The story that Michael always told about his mother’s suicide went like this:

“One day, things had gotten so back that basically, I took the shotgun and told her that it was her or me.  In the moment, she finally realized what she was doing to me.  And that night, she killed herself.”

He had been her caregiver for 14 years.  She had had countless unnecessary operations.  She threatened suicide frequently, and he never knew if he’d come home to find her dead or alive.  She begged for the pills that stopped the pain all the time.  She was diagnosed with paranoid schizophrenia because she had the delusional, paranoid spells that are not uncommon in some kinds of porphyria.  He tried to have her institutionalized at least twice, but she either could not tolerate being hospitalized or the people who were supposed to care for her could not handle it.  And so she came home. 

And things got worse and worse for Michael.  But he tried to pull himself out of it.  Eventually he started to lose some weight and work out, and he found a girlfriend on the internet, who opened a window to a different life, and he started to pull away from his mother, I think.  In retrospect, this all seems kind of familiar.  That window into a different world let him get some perspective and pull his head out of the tunnel a bit.  He started traveling to America, to Baltimore, to see that girl.  And even though that relationship was troubled, too, it was still an escape.  And, I’m guessing, his mother could feel the pulling away, and that escalated her depression and craziness, and, well, we all know the end of that story.

He always said that he had no regrets.  I’ve always wondered to what extent that was true.

But now I think, probably pretty true.  Because he’d been through a hell that was much longer than mine, and the relationship was different from his and mine… filled with resentments and anger as well as some kind of love. 

And so I sit here and wonder about that.  I wonder if I will tell this story to someone else one day, and be able, at some point in the future, to say, “I have no regrets.”

Because in some ways, I have no regrets.  I did everything that I knew how to do.  And then, when I ran out of things to do, I tried desperately to stay alive, to put myself out of the tunnel that he’d led me down.  It’s not what he wanted to do, but it’s what he did.  I could not figure out how to save someone who could not help himself at all, and so I had to save myself.  As surely as he gave that ultimatum to his mother, he forced that choice on me.  And I loved him, will always love him, but I love my son and my niece, too, and I love my family, and all in all, I would like to stay alive.  I have fought very, very hard to be the person I’ve become.

I can’t say that there are no regrets, though.  I regret so much I could not save him, that I could not make him feel loved and safe, that I could not give him the will to live, that I could not track down a solution that would really work, that in the end he was angry with me, and that if he had to die and end the pain, I could not hold his hand and be with him.  Or do something more than close the door because I could not bear to look.  That part breaks my heart more than anything.  I regret the future that we didn’t get to share, the person he should have been allowed to be, the pain and sadness.  I regret that I can’t remember the happy times without the sadness, and I regret that I can’t tell the illness from the person, in a lot of my memories.

I would like to step back from this, somehow, and say, no regrets.  But I cannot imagine it will ever be like that.

Day Two

I bought some books about grief.  I haven’t looked at them yet.

I don’t know where to start.  It’s like a mountain of All The Things.  The immediate things:  Michael’s death and my sadness and, to some extent, guilt, and just trying to put the pieces back in place and go to work and do the things that I need to do.  The things before:  the last two years and Michael’s gradual erosion and refusal (inability?) to do anything different; his increasing vagueness and forgetfulness, the depression and anxiety and control and everything else that was pushing me straight off the edge, too.  The long years before the porphyria diagnosis.  My mother’s death.  The early years of marriage, the conflicts with my son, trying to keep everyone happy all the time, the walking on eggshells.  The years before… the years that we were in separate places.  What it was in me that thought I could help, that let love for my best friend and my own need to be with someone, to be wanted, override common sense.  But I still wonder… I still wonder if this could have had a different ending.  Or were we both so damaged that this result was inevitable?

Michael used to ask me if I would do this again.  For four years, the answer was always yes.  I would have done it more wisely, I would have had better insight into what some of the problems would be, I would have learned things and done things better.  I would have been braver.  But the last two years… the answer was hell, no.  I never said that to him.  But it was the truth.  I could not bear watching him slowly die.  I could not bear watching him do things that were directly counterproductive, sending people out for junk food, making excuses to eat, not doing anything to help.  And it was so hard for him, I know.  I know that he tried so hard… but yet, he could not try in a meaningful way, a way that would stick for more than a day or two.  He would make plans, and they would come to nothing.  I would offer to help… but there was nothing to help with, no plan, and any plan I tried to impose was just a battleground.  I would not do the last two years.  Most of all, I would not do the fall of 2011, when every night I was taking pills and drinking just to be able to tolerate being there at all.  I was so depressed and desperate and exhausted, and I had no idea what to do or even how to ask for help.  And I could not bear how he treated the kids and other people.  Constantly sniping and complaining and being irritable with other people just existing around him.  I understand a lot of the whys.  It would probably have been easier for him with just the two of us.  But it would have killed me.  The kids were my support, when they should not have had to be.  It might be different if I’d felt that I was, say, bringing him joy in his last days or something.  But it wasn’t like that.  We just hurt each other over and over again.  Ironically, it was just before he died that I really thought that there was a chance that things were getting better.  But maybe I was hearing the wrong things.  So many things, in retrospect, that I should have listened to differently.

The most awful thing is that I know how much he loved me.  That he loved me as much as it is possible to love a person.  That no one will ever love me like that again.  And yet that love wasn’t enough to make it through the dysfunction and the childhood issues and the dissociation and the illness.  True love isn’t the magic spell.  I cannot be sorry that he’s dead and free, but I would give anything to be able to put my arms around him again and just hold him and tell him how much I loved him, and have him truly understand that.