Tuesday, August 14, 2012

How Much Time is Enough?

I was talking to my boss today, letting her know that I wasn't going to make a meeting on Monday and trying to explain why.  Monday is my mother's birthday, and my dad and I are going to take her to the zoo.  She hasn't been in a long time, and she wasn't able to go when Dad took her to the aquarium to see the penguins, so we're taking her for her birthday.  It's going to be a small inconvenience, as far as work is concerned, but the conversation kept bothering me anyway.  I went to the gym, went for a run, which usually clears my head, but didn't this time.  I came home and collapsed on the couch and somewhere between awake and asleep, I realized what it was that was bothering me.  It was something I hadn't said, an unspoken statement that I'm afraid to say:

I have to take my mother to the zoo because I don't know how much time she has left.


We knew something was wrong nineteen years ago.  My mother had been horribly sick when she was pregnant with Youngest Brother, though she'd had problems with fatigue long before then.  When my great-grandfather lived with us over the summer of 1996, he would peer into her room, trying to figure out why she was lying down in the middle of the afternoon.

I'm not sure when the word "lupus" came up.  But soon the piano lessons she gave to kids from town stopped.  She did her last wedding cake the week I got out of the hospital at the beginning of 1997 when I was 12--a friend came over to help her.  She had to decide where her energy was spent, and at that point, it was in homeschooling us.

We knew she couldn't do as much as she used to.  Things I remember from my childhood slowly slipped away as yearly activities.  But she was still Mom.  She was there to hug and hold and talk.

Until the end of 2009.


When Mom was diagnosed, the doctor told us that we'd have ten good years before things got bad.  We were lucky.  We had about twelve.


Lupus is an auto-immune disease in which the body's immune system turns on the body and starts attacking connective tissue.  It starts mainly in the joints, which was why Mom had to give up teaching piano and decorating cakes.  We thought we were doing good, because Mom's lupus had stayed out of her internal organs.  But during the course of 2009, as I moved away to get my Ph.D., things got much worse.

First, one of the medications to fight against lupus has serious side effects.  She had to start weaning herself off of it (a process that is still ongoing) before the medicine killed her.  That's when it struck, taking advantage of the lull in immuno-suppression (despite lots of other drugs to do the same thing) to attack her central nervous system.

They haven't been able to stop it.


In 2010, things were bad enough that The Boy and I considered moving up our wedding, though it would have put us only a month after Younger Brother's wedding, because we weren't sure she would make it all the way to December.  After consultation with her neurologist, we kept our date.  But slowly, over the course of 2010, things improved.  Youngest Brother sat her at Younger Brother's wedding by wheeling her wheelchair down the aisle.

By our wedding, my brothers were on each side of her holding on, but she walked herself down the aisle.


They took her off a lot of medication that was fogging her up.  Hallucinations stopped in the course of 2010.  She'd not driven in a while, and we knew she wasn't ever going to be able to again, but that was okay. She made more sense more often, could come up with coherent arguments, and while she was still obsessing over things, we thought, "yes! It was the medicine! She'll be better!"  There was damage done and we knew it, but we'd stopped it!  We could keep it from getting worse.

And for a while, we did.


She's hallucinating again. Seeing and hearing and feeling things that aren't there.  She's having new kinds of seizures, though the kind where she goes stiff and zones out have stayed gone for now--now, we can't really tell she's having one, except that she stops making sense.

In many ways, the last few years have been like what you read about dealing with Alzheimer's patients.  Or a five-year-old.


But at the same time, we also see moments of child-like glee and wonder in my mother, as if she's been gifted with the ability to once again shunt away adulthood.  Going to the zoo will be an adventure, but I know what she will do.  She will clap her hands at the sight of the giraffes, and squeal with delight at the penguins and marvel at the tigers. 


We're running out of time. Yes, you run out of time no matter what goes on, no matter who.  People can be taken away from us in a blink of an eye, and we are all left with regrets, thinking "Oh, if I'd only spent more time with them."

I know what's coming.  I know it's coming too soon. Now, more than ever, I have to make use of the time given me.

So I'm taking my mother to the zoo.