Tag Archives: Love

Don’t Look Now, It’s a Seizure!

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This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

As hard as epilepsy is on me, I think it’s harder on my family.  They have to watch when I lose consciousness.  They are the ones who see me seize.  My husband and children are the ones who lose out on days of parenting.  They are ones who get snapped at when my brain is mushy and confused and can’t process sensory information.  My family bares the brunt of that.  I yell at them that they are too loud.  I complain about the light.

I am wracked with guilt that I am sick.  I know logically it’s not my fault, I shouldn’t feel bad.  But I do.  I feel like a burden.  My daughter once had to stay home from school to watch over me.  She was 10 or 11.  That felt like a big fat F in the parenting column.

When I was pregnant with her, I was given a list of things I should no longer do unsupervised.  I was told I was no longer a full-fledged adult.  I required observation…  at all times basically.   The outside world isn’t safe for me to go alone.  My doctor told me so.

While writing this, I made some sort of sound and my husband whipped his head around.  Then he told me, “It’s the million little things that are nothing that are the worst.”  Some sounds are nothing.  Some sounds are seizures.

Many times I have been alone in my room, I’ll laugh something I’ve read, and my family shows up with terror in their eyes.  It’s a special kind of look.  The look says, “Are you having a seizure?”  It’s a sad, puppy dog look, wrapped in fear and sometimes annoyance.  

Once I got stuck folding laundry for a minute or so.  I folded a towel over and over again.  Then I was back and had no memory of it.  My kids had to tell me.  I was physically unhurt.  I didn’t grind my teeth into my tongue.  I did not fall to the floor or onto the table.  I felt more or less okay.  They still had to change their plans to care for me.

Kids with sick parents have to be older than their age.  We joke that driving will be their chore, not a privilege.  They will HAVE to get their license to drive me around.  It’s a joke, but it’s not.  We try to keep it light, but remind them: Life isn’t fair.  But we have to go on, I guess.

I wish my kids didn’t know what a “normal” seizure looks like over an emergency.  There’s a difference and they know it.  My seizures have so many side-effects it’s hard to keep track of them.

I’m not what I would call healthy.  But I can pass.  For a while.  A few weeks, a month, maybe longer if I’m lucky.  But epilepsy will call my name and my family will have to pick up the pieces and tell me where I am and what’s happened.  They make dinner and get me ice water.  I’m like a baby again. I need to learn to talk all over again.

When I was most distraught, I asked my husband what I was supposed to do?  How was I supposed to go on?  He said, “Pick yourself up off the floor and go on. You do it all the time.”  It was a revelation for me.  I do.  I wake up on the floor and I have to get up.  I hit rock bottom and get up again.  My husband and children help me up.  They lend a hand when I can’t stand completely.  

I don’t like to consider what my life would be without them.  Who would tell me I was folding the same towel repeatedly, just like I’m stuck buffering?  

It’s okay, I’d rather they laugh about it than cry.  Although I know they do that too.  My son gets in trouble in school after I’ve had a seizure.  He’ll try to hide it but the fear bleeds through.  Seizure days are the worst.  We are all on high alert.  My kids are latchkey kids so they can get in if I’m having a seizure.

I don’t know how I’m so lucky.  My family still loves me despite it all.  The rage, the tears, the seizures, the mood swings, mania when I don’t know I’m manic..  They have to live with it.

Thank you, Adam, Zaria, and Dax.  You give me light in the dark when I can’t see.

NEXT UP: Be sure to check out the next post tomorrow by Maureen Knorr at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the fullschedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET

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Filed under Essays, Living w/ Epilepsy, Non-fiction

My Grandmother’s Deathaversary

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It’s been a year since my Grandmother died.  She died one year ago today.  She went into the hospital only a few days before.  She was lucky that way.  She was healthy and able up until the end.  I had seen her only days before; she was sitting in her home talking about the thirties.  I told her she was the strongest person I knew.  She brushed me off.  I’m glad that I got to tell her.  Then my grandmother and cousin and I talked about Christmas.  I asked about what I should bring to Christmas Eve.  Her answer was a wave of a hand and, “Whatever you want.”  Every year for my entire life, we had gone to my grandmother’s house on Christmas Eve.  Last year was the only year that we didn’t.  She was buried only a few days before.  I didn’t know that we had already celebrated our last Christmas with her.  I would have remembered more of Christmas 2011 if I had…  This picture is from then, I’m glad to have it.  My memories of the years of Christmas Eves at her home are all overlapping.  I can’t remember what year things happened in. But they always happened at Grandma’s house.

I am convinced that December is the worst month to lose a loved one.  It’s always terrible.  But right before the holidays is just brutal.  Last year I spent the days before Christmas crying, watching my Grandmother die.  It didn’t seem like a holiday.  I keep hoping nobody dies this December.  Even though she was gone last Christmas, it still somehow feels like this is the first Christmas without her.  It is the first Christmas that we know in advance that she will not be there.  No pierogies, no Christmas cookies, no tales of Christmases past.  We will actually have all of that.  Just not with her, and not from her.  I regret so much that I never made pierogies with her.  I cooked with her on occasion, she taught me to make her noodles.  But I should have written it down.  One of the first things I did in the weeks after my grandmother died was to copy some of her recipes.  How priceless they had become!  I never thought I would so acutely miss food.  What wouldn’t I give for one last Christmas cookie, a thumbprint or a pizzelle?  I wanted to go into her house and raid the freezer.  It is not her home anymore.  I no longer have freezer privileges.   There are no more frozen treats for me.  No more borscht or broccoli soup.  No more pierogies, made by the hundreds at a time and frozen for future use.  I have dreamed that there were pierogies still in the freezer.  There aren’t.  I am so thankful for all of the times she fed me.  She was an excellent cook and always put so much love and work into her food. She would cook for hours before we came over for dinner.  Every Sunday.  I didn’t appreciated it enough as a child.

Luckily for me, my grandmother lived until the ripe old age of 97.  I had many years of adulthood to appreciate all that she gave me just by being there.  Still, I thought I was going to have a few more years yet.  I thought for sure she would live to 100.  I thought she could someday be on the Today show, the oldest woman in America.  She was so strong up until the very end.  She went peacefully.  As peacefully as death can be.  She died in her own bed surrounded by her loved ones.  We held hands and hugged and wept and prayed over her as she died.  She would have been so proud.  My last gift to her was the Hail Mary.  What a lucky death.  If only everyone could live a long full life and die surrounded by family!  It is what she would have wanted, with so many of her non-Catholic “heathen” granddaughters praying for her.  “Pray for us sinners now and at the hour of our death.”  We did.

She is everywhere now.  I almost wrote her name down on my Christmas list.  I’ve nearly picked up the phone to call her more than once.  And I wish that she was here so I could ask her if my son was like her youngest son as a child.  Just for future reference.  So I can keep the matches well hidden.  (Wink wink to my uncle. She never held it against you.)

I am glad for all the stories she told me.  She was more than willing to talk about the twenties and thirties and forties like they were only yesterday.  She was quick to share any story you asked about.  Even the grimmer stories, she shared.  Perhaps it was the G or PG version of the past.  I now see that.  But she told me anything I asked.  Lucky for me I am an asker.  I always have questions to ask.  Some people find it offensive, or so I have been told.  I guess not everyone wants to reveal personal things about themselves.  But, if you don’t ask, you won’t know.  So I ask.  I like to know everybody’s stories.  My grandmother told me anything that I asked.

She actually told me a story that I hadn’t heard before on our very last visit in her home.  Or rather she told me a story I had heard many times before, but there was a revelation that changed everything.  I never knew that my eldest uncle was alive when my Grandmother’s first son died.  Somehow I never knew that timing before.  I always assumed he had not yet been born when Peter died.  When I realized my uncle was alive, it changed everything.  I knew now how she survived losing Peter.  I had wondered that for years.  My uncle, just a baby, kept her alive.  I thanked him for that at the funeral.  She was a tough old lady she really was.  She survived so much and truly kept an open heart.  I wish I had more time with her.  But we did have a lot of time together.  35 years.

I was lucky.  I lived in the same town as her for most of my life, college years excluded.  I am so thankful for that.  I have hundreds of stories and memories over the years.  She came to every single one of my birthday parties and my childrens’ birthday parties.  ALL OF THEM.  She had come to my son’s birthday party only a month and a half before she died.  She had to come in the back door since there were less steps.  She was never able to come in the front door of my home.  She had long since stopped going upstairs to her own home.  Years.  A decade or more?  She couldn’t handle the steps. She had no cartilage in her knees and her achilles tendons were shortened.  She should have been wheelchair bound.  She only rarely submitted to this horror in the end.  She used a cane, but should have used a walker at least.  She told me she was afraid if she used a wheelchair she would never stand up again.  I understood her fear.  I respected her resilience.  But I really wished she had submitted to some help.  For her own sake.  She could have been relieved of at least some of the pain involved in walking.  But nobody could tell her anything.  Why should we?  She far outranked all of us.  97 years offers you wisdom and respect.  Plus she was humble and pious and totally had God on her side.

She was what the Catholics call a saint.  No, really.  She should be a saint.  She made over 47,000 rosaries to be given to the children of the Roman Catholic Diocese of Erie.  47 THOUSAND.  That’s alot of prayer.  She met two Bishops.  Right before she died, she met the new bishop and he thanked her for her service.  He told her she was a blessing to the community.  She was at peace with her God.

Because of her I am here and so are my children.  Without her struggle and labor and love and salvation, I would not have been born. Because of a single woman there are now 26 new people in the world.  My grandmother had 7 children, 12 grandchildren and 7 great-grandchildren.  So far.  She was so proud of us all.  I am so proud of her.  I marvel at all that she lived through.  I miss her everyday.  Especially today, the day the world lost a saint named Helen Elizabeth August Trocki.  I like to believe in heaven for her.

Thank you for everything Grandma.

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