RECORD STORE TALES #977: “Love Is Hell”

In my 20s and early 30s, I used to think I would love nothing more than I love music.

It’s an easy conclusion when people let you down, but a good song never would.

When love hits you for real, everything changes.  You have to redefine everything.  What once seemed crucially important now seems trivial.  What used to have your undivided attention now competes with something nearer and dearer to the heart.  It happens.  There’s nothing wrong with that; in fact it’s a good thing to have in your life.  I don’t think Paul Stanley will mind that there’s something more important to me now than a collection of songs.

Love is heaven, and love is hell.

Love is hell when the one you care for is sick and it kills you inside every time to see them hurt.

Love is hell when their suffering stabs you in the heart and leaves you in agony.

Love is hell when there’s nothing you can do about it.

Epilepsy is hell.

It’s hell for the person who has it and it’s hell for the people who care.

Epilepsy is hell when you see someone in a seizure and can do nothing until it has run its course.

Epilepsy is hell when someone falls and you’re too late to stop it.

Epilepsy leaves marks.  Sometimes, you don’t even know where they came from.  “You must have fallen,” I said to Jen.  But when?  How could she not know?  Purple bruises decorate her chest, her arms, even her face.  People see bruises and they judge.  They assume.  They look at you funny.

I would have done anything to catch her fall.  But how can I when I can’t be everywhere all the time?

The facial bruise stares back at me, and it makes me turn my head.  I can’t look at it.  It’s horrible.  It makes me want to break down and cry.  How could this have happened?  But there’s nothing I could have done.  I wasn’t there and she has no memory of it.  We can only guess and sometimes that leads the imagination to come up with far worse, far scarier scenarios.

Even when the seizure is over, the afterburn can go on for hours.  Sometimes it’s like sleepwalking.  She’s completely unaware of what’s going on, but she’s able to unlock a door and leave the house.  It’s happened before, at least three times.  Once I found her wandering the hallway, bumping into a wall.  Once she left the house in the middle of the night and I only realized she was gone when the phone rang.  She was trying to buzz herself back into the building, terrified.  She had no idea how she got out there.  The third time, I noticed the house had gone quiet and she was nowhere to be found.  I discovered her walking in a daze up King St., in the cold, with no shoes on.

I’m usually able to stop her.  No mean feat; she’s strong.

Yesterday was awful.

I was working on a project.  I heard her coughing, and I ran out into the living room.  She was fine, just something went down the wrong pipe.  I admonished myself for panicking.  But then, 10 minutes later, there was more noise, like mumbling.  I ran back into the living room to find her in a full-blown seizure.  Her lips were blue and she was making unintelligible sounds.  It passed quickly and she laid down on the couch to rest, completely zonked.  Then the worst came.  The next sound I heard was the door opening.  Sure enough, she was on her way out again, unaware of her situation.

I don’t know how, but I somehow managed to race out there and position myself between her and the already open doorway.  It is like a blur to me now and I have no idea how I did that.  It was teleportation, or a miracle. I slammed and locked the door and kept myself jammed against it.  Even in her dazed state, she kept unlocking the door and reaching for the knob.  She kept repeating, “Sweety, I have to go,” but could not respond to questions.  She had no idea she had no shoes on.  I stood there in front of that door for a solid 10 to 15 minutes, as she tried to move me out of her way.  I resisted, but she is strong, and I was terrified that if she pulled at me and I didn’t budge, that she would fall backwards and hurt herself worse.

The neurologist wants me to try and get video of these kinds of episodes.  How??

I struggled, wrestling with her, trying to keep her hands away from the door knob.  She cried in pain when her wrist twisted in my hands.  It was the worst feeling in the world — for me.

After what seemed like millennia, she grew weary or perhaps forgot what it was she was doing.  She went back to the bed, to sleep it off.  It took almost three hours of sleep for her to return fully to normal.  Or at least, whatever passes for “normal” when this is the life you have.

My “normal” now is a constant state of alert.  I am always listening.  I have to be.  It’s a constant state of anxiety that rarely subsides.  It is the life I live now.  It’s like when the Starship Enterprise is at yellow alert.  I’m at yellow alert almost all the time.  I go to red alert when she’s in danger.  Red alert happens every few weeks.  It seems like I’m rarely in condition green.  We have a system where she’s supposed to text me every 30 minutes when she’s out alone, which helps keep me calm.  It’s not perfect but what else can I do?  You could say “just don’t worry about things you can’t control”, but after 10 years of conditioning, my nerves are shot.  It’s hard to make a plan for your night, let alone your life, when this happens.

But here’s the thing.

Love is hell, but the truth is, it is also heaven.  The good always outweighs the bad.  I would not trade my place with anyone.  I am where I want to be.  With the person I love.  Through good and bad.  Sickness and health.  That’s what we swore to, and that’s the way it is.  If this is my life, so be it.  I just have to learn to live with it, and I’m trying every day to get a little better at that.