Tuesday, February 25, 2014

Almost a year...

Tuesday, February 25, 2014

This Friday, it will have been a year since Gery died. What I thought was the worst day of my life wasn't - that was actually his funeral, which was March 4, 2013. I still don't have the right words to describe the feelings. I love(d) him, but we were having problems. I can say now that I'm pretty sure they were symptoms of his brain tumor. That doesn't make it hurt less that in the second half of our marriage, I felt like we should be separating and divorcing and that we were staying together out of comfort, habit, and the promises we'd made to God and each other and to Sarah.

I am still, at times, desperately sad and lonely. I am also, at times, able to forget that I am a widow and the mother of a fatherless child. Sometimes Sarah talks about Gery and I'm so happy she has those memories - things they did together, things he made for her, places we went together as a family. Sometimes, she's a very normal 5 (almost 6) year old, and she says things like, "This line is so long that I wish I was dead like Daddy," and I don't know how to respond. She's 5. She knows death. But she's 5 and in her world, nothing is forever. She says forever but she doesn't know that it means he is never. coming. back. Never. Never again. There will be no new memories. And I fear that she'll forget him, and so even though it still hurts a lot to talk about him, I do so that she can remember him. If not through her eyes, through mine.

I'm kind of bouncing around like a pinball. (Pinball analogies? That's what I do now? I was always annoyed by the time the pinball machines took up. I wanted him to do things for and with me and (later) Sarah.) I moved across the state but I'm homesick and want to go back. But I don't want to go back to our house. I want to go to Erie. The next minute, I want to go to somewhere else. What I think I'm missing is that there is no place where I will feel comfortable in my own skin. I've been able to grow where I was planted in every other circumstance in my life, but (to follow the metaphor) my roots have been torn off and my leaves are shredded.

Talk about your terrible writing. I'm a pinball and a plant? Sooner or later I'll be able to write well again, too.

Tuesday, November 26, 2013

Nine months.

November 26, 2013

Ten months ago today, Gery had his seizure. Nine months ago on Thursday, he died. Thursday is Thanksgiving. My favorite holiday. It means so much to me because (long story short) my mother and two of my brothers (she was pregnant with the youngest) and I ran away from my father in Georgia and arrived in Pittsburgh on Thanksgiving Day. We were met by my favorite aunt and came to live with my grandmother. I had no idea then how very dangerous our lives had become or how dangerous the running away was, but I did understand three days on a bus, followed by baths and clean clothes and a lot of food.

It mattered to me to have my family together on Thanksgiving. Gery and I hosted Thanksgiving dinner for the past 8 years. This year, we're not. Obviously. One of my brothers can't come. Two of them will be there. "There," though, is not my house. We're going to my inlaws' for dinner.

This is no longer my favorite holiday. I don't know that I have a favorite anything anymore. Everywhere I go, I feel like I'm on the outside. I'm an extra. An odd number at the table. I drive myself and I leave alone. Nobody holds my hand, except Sarah, and even that is fading because she is a very big girl.

I don't want to be a burden. I don't want to be an outsider or an odd number. I'd rather skip it all. I'm not handling this well and I am irritating even myself because I can't snap out of it. I can't fix it. I feel like I'm whining constantly. Who wants to hear how sad and lonely I am when they're in love? Pregnant? Shiny new baby? Happy family of four on a beautiful snow covered Christmas card? I'm none of those things and I'm bitter.

The things I wanted and dreamed about and planned will never happen. I'm grieving the loss of my own life as much as I'm grieving the loss of Gery's. People tell me they think I'm strong, that I've handled this with grace. Maybe I have. Maybe the reality is that I haven't handled anything and here I am facing what I've ignored, which is that I am alone. It is extremely tempting to isolate myself further because I cannot believe that anyone would want to be around me right now.

I wish I could end this on some happy note, saying that I've realized something profound. I haven't. I'm depressed and sad and lonely and I'm struggling just to get up every morning. To provide any kind of life for Sarah. To connect to my family and friends when I want to close everyone out. I have hope that one day, if I keep trying, that I will feel like I'm in sync with this world again. 

Friday, November 8, 2013

Stop this Merry-go-Round! (I’m ready to get off.)

Monday, January 28, 2013

It was very strange, getting up in the morning after the sun was up. Gery always left for work before me, but because neither of us were going anywhere, we slept in. I took Sarah to daycare so I could make phone calls, but I had to make Gery ride along with me because leaving him alone was just too much to handle. Even for the half hour it would take, I couldn’t have managed to leave him unsupervised after seeing him have those seizures. We went in, I tried to briefly explain things to the director, but she had questions and Gery had a lot to say. 

I called the neurosurgeon to make an appointment. I was transferred to the physician’s assistant who would come to handle absolutely everything for me from Gery’s disability paperwork to my FMLA paperwork to labs and prescriptions and coordination of his many, many evaluations and appointments. She asked me to keep the phone by me so she could get back to me with an appointment time. I assumed it would be a week or so, since Gery was going to be seeing a big cheese. Wrong. The appointment was scheduled for the next day. 

I texted Gery’s parents and sisters to let them know, and his mom said she would come along. I was grateful. My ability to understand all this was limited (though I asked a lot of questions, did a lot of research, and came to know much more than I ever thought possible), and she both knew the right questions and was another set of ears to remember information. 

**Gery was not a reliable historian of the things that had happened that brought us here, and he was still unable to move information from short to long term memory. He was often confused and frustrated, and relied a lot on me and the people he was with to answer simple questions. I came to the point where I would not send him out with anyone who couldn’t keep him from getting agitated. Immediate family and extremely close friends, yes. People who could remember that he liked a steak burrito with hot salsa and no beans at Chipotle, and not ask him what he wanted. It sounds so silly and simple now. Rearranging deck chairs on the Titanic.

I know I called my office and his and spent a lot of time setting up availability for us both to be off, but I don’t remember the details of the conversations. I know I talked to friends from college, to extended family members, and that when I went to talk to him about it, he was asleep. He started napping all the time. He had apparently been falling asleep every day after work – he would pick Sarah up, come home, and fall asleep. She didn’t tell me until after he was gone. Not that it would have made a difference for him; I wish I’d known that she was pretty much unsupervised for an hour every afternoon. 

I woke him, made him ride along to pick Sarah up, and we came home and I made dinner. A normal end to an extremely abnormal day. The next day was even stranger.

Wednesday, August 14, 2013

The smallest things hit the hardest

This weekend, Sarah and I went to a birthday party for a one year old. The one year old's dad is one of Gery's friends from school - probably elementary school, honestly - and they were sweet enough to invite us. As I watched this guy be an awesome dad, and watched another one of Gery's oldest friends be an awesome dad to his two year old, I thought that Sarah got cheated. Gery got cheated. These friends got cheated. They all should have been awesome dads together, doing regular things with their kids, grilling at birthday parties and having a beer together. And then I had to leave the party before I cried in front of people.
Today I took Sarah to Kindergarten orientation. I took her to daycare, went to work for a few hours, and went back and picked her up to go over to the school. I planned to go back to work. That didn't happen.

She is more than ready academically. She's more than ready socially, with one exception - the obvious. Sometimes she cries when she separates from me. That never happened before Gery died, and I'm pretty sure it's a direct correlation. She did not cry today. In fact, when her teacher called her name, she jumped up and ran to the front of the room and got in line with her classmates, and walked out to go to her classroom without a second look at me. I'm proud. It seems like THAT should be a moment that makes me tear up, but really, that's what I want for her. The ability to go forward into a sort of unknown situation and be cheerful about it.

All of orientation was fine. I met her teacher afterward, introduced myself, said that Sarah was very excited for school and that I needed her to know that Sarah's dad had died several months ago. That Sarah has bad days, and on those days, if she asks for me, I'd appreciate a call or an email letting me know. All fine. I didn't cry, my voice didn't crack, I didn't even feel that sick feeling that comes sometimes.

But then as we were getting in the car, Sarah said her stomach hurt. Terribly. Awfully. So bad that she thought I should probably call work and ask to stay home all afternoon, and that I should probably take her to lunch to make it feel better. Then, she very quietly asked me to take her to her Daddy's grave. She needed to talk to him. So I took her to lunch, and then we went to his grave. She hopped out of the car and said, "Daddy, I went to your school today. My teacher knew you when you were kids together. She said you were funny. I miss you and love you!" and she hopped back in the car.

On the way home, she asked me why all the other graves have stones and why Daddy's grass is so green. I explained that his grass is green because it's newer than the other grass, and that I haven't gotten his stone yet because I don't know what to do about it. She wanted to know what goes on the stone, and I said, "His name, the day he was born, and the day he died," so then she wanted to know what day he died. Then she asked what time. And then she wanted to know how I knew what time it was, and I said, "Because I was there with him, baby. Grandma and I held his hands, and Aunt Megan and Grandpap were there too." Her last question is the one that did me in. Usually I can get through and cry later, but this one finished me off. "Did you want to be there?" and I said, "There's nowhere else I could have been."

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.