Wednesday, July 31, 2013

Post-ictal family dinner

Sunday, January 27, 2013

***Post-ictal is a word I learned from the paramedics who assessed and transported Gery to the hospital.  It means the period immediately following a seizure in which the brain is still recovering.  I'm using a little poetic license because it's usually not more than an hour unless the seizure was very large (and Gery had a series of large seizures).  

Family dinner was and is a staple of our lives - every Sunday, we have dinner together.  We talk about the things that happened that week, we have inside jokes, we catch up on each others' lives, we have wine, we eat off of each others' plates, we yell, we argue, we love each other and I can't quite capture the essence of it other than to say it can be the best and worst part of my week.  Nobody holds you accountable like the people who love and know you best.  

We walked into Gery's parents' house together like we'd done so many times before.  Sarah exploded through the door because she had a lot to say to her grandparents, her aunts, and her cousins.  She had gone sled riding on a big hill, ridden in the back of a pickup truck, slept in a sleeping bag... her weekend had been amazing.

I knew there would be meatloaf.  It was Gery's favorite.  Mine is okay, but nothing compares to his mom's.  I haven't eaten meatloaf since he died.  He seemed a little confused and kind of awkward, like he wasn't sure what he was supposed to do or say.  I was relieved, honestly.  I had gotten him to his mom, a nurse with a lot of experience and education, and I had done it without further incident.  For a couple hours, I was not in charge.  I did have some of the answers, though, even though we all had many more questions than answers. All I really knew was that I would call the neurosurgeon on Monday, and that I wasn't going to work because I didn't know what to do with Gery.  He couldn't be alone, and he couldn't drive, and he was still easily confused and very quickly tired - so I was off work to make a plan.

I wish I could give details of the conversation, or of the questions, or of Gery's reactions, but the whole thing is a blur to me.  I was so physically and emotionally exhausted (though I had no idea that I was at the very beginning of what I would end up being able to handle and stand up to) that I just checked out and let someone else pay attention and take care of him until it was time to go home.  

Monday, July 29, 2013

The long drive home

Sunday, January 27, 2013

Once the decision had been made that Gery needed to come to Pittsburgh (again, something we were both happy about because we got to go home), they moved pretty quickly in releasing him from the hospital, giving me prescriptions to fill and phone numbers to call, and sending us on our way.

The friends who had picked Sarah up from me right after Gery seized came and visited, brought us breakfast and me some sinfully delicious sweet coffee concoction that did a lot to perk me up and restore my sense of balance ("When in doubt, have dessert," is a pretty good description of my life's philosophy), and made me promise to keep them updated.  My brothers brought Sarah to the outside of the hospital with perfect timing to keep her from seeing her daddy in the hospital, because at that point I was still concerned with her not knowing too much.  And we hit the road for a drive I made every other weekend for 3 years, then monthly for the next 5 years, and only recently was able to do again.  Erie to Eighty Four.  We were going directly to Gery's parents' house so that they could see and touch him and know he was okay, and so we could talk about the plans from here.  I knew that of all the things that would come next, I could not do any of it on my own, and that I didn't have to.

But I cried after Gery and Sarah fell asleep.  I cried from Edinboro to the split (and only those of us who have made this drive know what I mean - it's about an hour and a half).  Big silent tears rolling down my face as I thought about the possible outcomes.  None of them were good.  While the neurosurgeon in Erie had said the tumor was "on" Gery's brain and led Gery to believe it was between his dura mater and his skull, I had googled "hemangipericytoma" and the name of the neurosurgeon he'd been referred to. The neurosurgeon was the chief of neuro for all of UPMC, and the tumor was rare and not much was known about it.  And it was in the center of his brain according to the MRI images we'd been shown, not between his skull and dura mater.  But we were in the car, heading home. 

Later I would know that his anti-seizure medication levels were subclinical, meaning he could have had another seizure at any time.  Later I would understand that I had been given just enough information that if he were to have another emergency, I would be able to make the first responders understand that he was medically fragile.  Later I would be angry that I had been put in the position of being responsible for things I didn't understand yet.  But at that moment, I was just sad and scared, and determined that I would do whatever he needed me to do.  I would be whomever he needed me to be. 

And then he woke up and he wanted to know how much longer.  What?  How could he not know this?  He went to college in Erie and he made the drive just as often as I had, and since my family was there and his was in Eighty Four, we'd made this drive together many, many times.  How could he not know we were just 45 minutes from his parents' house?  He was the one who knew every sign and landmark in every place he'd ever been.  He was the one with the map of the world in his head.  I need GPS, but Gery knew every place and how to get home from there. 

I said, "45 minutes," and he went back to sleep, and he didn't wake up until we were on his parents' road. 

Sunday, July 28, 2013

Five months

Sunday, July 28, 2013

In five months, you can be halfway done gestating a baby.  It's almost two seasons long.  It's not quite anything, five months.  And yet, five months feels like five minutes and five years at the same time. 

Gery died five months ago today.  I didn't do anything to commemorate it.  I hate going to his grave.  That hole in the ground has nothing to do with who he was and everything to do with what isn't possible anymore and I hate it there.  I don't go to church anymore.  I went to Easter Mass and sat there and sobbed the entire time because all I could see was Gery's casket in the front of the church and all I could feel was how I'd had to be held up by Gery's dad, my brothers, the firemen, and Gery's fraternity brothers.  At every moment, I had to be held up.  And instead of remembering that we were married there, that we were in his sister's wedding together while I was pregnant with Sarah there, that Sarah was baptized there, that both our niece and nephew were baptized there... all I feel is the crushing sadness of a life we no longer share.  Not the joy of new beginnings but the pain of an early ending.  It's not sharp anymore.  It's just a piece of me.  It's dulled and so have I. 

I cleaned his things out of the closet and put them in the basement.  Not today, that would have been too much.  But I did it because I needed the space for the shopping spree I've been on for the past five months.  Four, really.  I was numb and paralyzed for all of March.  Sarah's wardrobe is similarly expanded.  It's a rebellion, really.  Gery was the most frugal person I've ever known.  His friends used to call him "tighter than two coats of paint."  And I have so many new clothes, new furniture, new paint in the living room and plans to paint everywhere else, new, new, new.  Anything I have that's a memory does not get worn anymore.  A black dress that I loved and wore constantly?  I wore it to a wedding and there's a picture of us.  I wore it to a Christmas party and I'm wearing it in our last family picture.  And I wore it to his funeral.  I will never wear it again, but it hangs there.  It's a symbol.  One day I'll be able to put it away or give it away and I'll know on that day that I am normal.

On a daily basis, I'm fine.  I know I'm fine because I get up every day, I get Sarah up, I get us both ready to face the world, and I show the world what it wants to see.  It wants to see that a 31 year old widow isn't going to shut down and hide and so I don't.  I don't take the medications that I have so readily available to me.  I don't want to do that because I understand complicated grief and I know that my grief is not complicated.  We didn't have "unfinished business," unless you count the next 50 years that we should have shared.  I said everything I needed to say to him and the last thing I know for sure he heard from me is, "I love you," because I was sitting there talking to him when he came out of the first surgery and he was conscious and coherent (which is a story for another day). I don't need counseling. This is how it's supposed to be for someone like me.  It will get better because it has to. 

In a lot of ways, it's already better.  I'm no longer paralyzed.  I don't cry very much, and when I do, it's not for hours.  I have continued to spend a lot of time with his family and I'm spending more time with mine.  I'm lucky enough to have friends who knew and loved him and want to stay in touch with me. I'm also lucky enough to have friends who did not know him, were indifferent to him, and love me for who I was before and who I am now and it's not painful for them to see me be different than I was then.  I know when it hurts people to see me and I try not to do that to them. 

And so.  Five months.  It's not that long, but it's forever. 

Saturday, July 27, 2013

The day everything started to change, part 3

You may want to read part 1 and part 2 first.

Saturday, January 26, 2013, continued

Gery was admitted to UPMC Hamot in Erie and moved to a regular room.  At this point, he seemed pretty normal, except that he kept asking me the same questions over and over again.  He wanted to know which hospital we were in, and why we were in Erie.  Where Sarah was and who she was with.  He wanted to know what happened, and when I told him, he wanted to know if the car was fine. He wanted to know if I'd called his parents, and if I'd canceled the hotel room and dinner reservations.  Then he'd watch tv for a little bit, and start the cycle of questions over again. 

A neurosurgeon came in and pretty excitedly explained that Gery had "a mass" on his brain.  He specifically said "on," and not "in," and I didn't realize then that I was being snowed in order to get us out of Erie and back to Pittsburgh.  He showed us digital MRI images and said that with contrast, the mass "lit up like a Christmas tree," and that preliminarily, he thought it was either a meningioma (most likely benign) or a hemangipericytoma (most likely malignant).  He gave me a name and number for a neurosurgeon at UPMC Presby to call on Monday.  He talked about Gery's tumor being "interesting" and maybe that there could be research about it since it was pretty rare, especially in a 34 year old man. 

A neurologist came in and talked about Gery's seizure history (febrile seizures as a toddler and nothing until now) and about the medication he would be taking.  They put me in charge, basically.  I felt pretty confident that I had everything under control.  When they said I'd be driving him home on Sunday, I thought that things could not be that bad.  If it were terrible, they'd put him in an ambulance, right?  Not send him in the car with me with a referral to make a phone call.

Through all of this, Gery was making inappropriate jokes and comments.  He told a nurse in the ER that she had "nice tits, but her roots needed done," which was true but out of character for him.  He told me that I looked like hell and I should go wash my face and fix my makeup (thanks, honey!).  In retrospect, he'd been heading this way for a few years and it wasn't until this day that it became obvious that he wasn't just being a jackass.  My socially awkward, nerdy, pinball machine and train set loving, electrical engineer of a husband had become the kind of guy that makes everyone cringe because he's so far over the line. 

I took a picture of the MRI image and sent it to Gery's mom.  I wanted her to see it so that she could tell me everything was going to be okay.  She did not tell me that.  She said she loved us and keep her updated. 

Several friends stopped by the hospital to take care of me, and I will be FOREVER grateful.  I forgot to eat, to drink, to do anything but try to get the information from the doctors and send it to Gery's mom to be my backup memory, and keep Gery from being agitated.  My brothers still had Sarah, and people brought me dinner, brought me coffee, brought me snacks and magazines, and made sure that I paid a little attention to keeping myself under control.  You guys are the best. 

About 4am, it all hit me.  I was pretty sure he was asleep, and I was in the chair next to his bed, and I just absolutely lost it.  We were in Erie, two and a half hours from home, on a last-ditch effort family vacation to save our marriage and our family, and I just knew he was going to die young.  That I had chosen the very best dad for my very special little girl, and she wasn't going to have him dance with her at her wedding.  That we were never going to get the chance to fix what was wrong with us because even if he lived, I would be his caretaker.  I was absolutely terrified and shaking and sobbing, and he said, "Hey, come here. Don't cry like that."  I reached over and held his hand, and he asked me to get in bed with him.  I didn't want to because of all of the lines and monitors, but somehow we made it work, and I cried myself to sleep in bed with him.