Easter

Today is Easter. A day of joy, of celebration, of singing trumpet-filled songs about victory over death and the like.

But I don’t feel too much like celebrating. My mom is still dying and I’m too exhausted to be all joyful.

So today during church (first time at church in two months. Score!) I was trying to figure out why Easter, why the resurrection of Jesus is still good news, is still relevant, even as I rebel against the celebration and the joy (but not the candy) that the day provides. How can Easter be meaningful, even to me?

I realized that the resurrection, the fact that Jesus lives, permeates my entire understanding of death. The promise of new life, of a new heaven and a new earth without tears, death, suffering, crying or pain (Revelation 21:1 – 5) is what keeps me sane. The belief that my mother is going somewhere better, somewhere where she’ll be whole and free again is what allows me to say goodbye, to tell her that she can let go whenever she wants to.

Now I don’t know for sure where my mom is going after death. I have no knowledge of who goes to heaven or hell, or what they look like, or if they even exist. But I hope that when she dies she gets to hang out with her mom, her sister, and my dad’s parents. I hope that she’ll watch over me, and look down on me here on earth. And I hope that someday I’ll get to see her again, wherever she is.

So that’s what Easter means for me. That’s what Jesus living again means for me. It means life after death. It means peace instead of pain. And even if I’m wrong it brings me comfort, so I’m going to keep believing.

I'm also going to keep Peep jousting. Mom's pink peep killed Dad's yellow peep first, so she's the winner

Comparison

My friend Alex gave me a book to read. She was really hesitant – she didn’t know when would be the best time for me to read it. It’s a book about death and mourning and the deep and manic pain that comes when a loved one dies. It’s called The Long Goodbye by Meghan O’Rourke.

Meg’s mom died of colorectal cancer at the age of 55. The first half of the book is about the lead up to the death – the journey from the diagnosis to the passing of her mom. The second half (which I haven’t read yet – I’m saving it for later) is post-death, and the aftermath of the loss. It’s brutally honest, and reveals Meg’s pain and the brave and insane ways she deals with this loss. She’s caring, needy, selfish, and giving all in one messy package – it feels like me.

Even though I try not to compare my experience to anyone else’s I can’t help doing it, especially when reading a book where Meg’s mom’s cancer had spread to her brain. Meg’s mom, Barbara, even had the CyberKnife (read: a pointed radiation “knife” that cuts out brain tumors) that my mom chose not to have.

But Barbara didn’t have a stroke. And the cancer spread to her bones as well. So Barbara was in lots of pain, on lots of narcotics, and slowly loosing her ability to function. She alternates between being her old self – aware, capable, focused – and her cancer-created self – confused, unfiltered, declining.

And after reading Meg’s account of her mother slowly losing her mind, I realized I’m really glad my mom had her stroke.

Yes folks, that’s right, I said it: I’m glad my mom had her stroke.

Because if she hadn’t she would have slowly lost her ability to function. She would have slowly gone from speaking normally to being unable to complete full sentences. She would have slowly moved from being able to care for herself to being completely dependent on others.

Instead, she had a stroke. Things didn’t slowly change – in the blink of an eye everything was different. So instead of seeing her slowly decline, we got to see her slowly improve. We were thankful for every word she gained instead of cursing God for every word she lost. We were ecstatic that she remembered us at all, instead of pained that she couldn’t remember who we were. Each word, each thought was a gift that we could have easily not had. It’s still painful seeing her now, slowly loosing some of the words and movement she gained, but it’s easier than seeing her decline from herself at 100%.

The stroke was a mercy. A small mercy, mind you. But a mercy nonetheless. It gave us a new perspective, a new shape to the world. And it gave her a childlikeness that keeps her laughing through it all.

And so Meg, thank you for sharing your story. Thank you for being so honest. Thank you for giving me a community in which to experience my pain, and for a clearer perspective on my own loss.

The cliff and the trampoline

*Disclaimer: this post uses really poor metaphors. I’m not a poet, so that’s just how it goes. 

Last Friday my mom fell of the cliff. Everything that could have happened (you know, other than actually dying) did happen. Her right leg stopped working. Her entire right side lost all strength – she couldn’t sit up; instead she was hunched over and to the side. She was so tired she went to bed two hours early. Or at least she tried – instead of falling asleep she threw up all her dinner. She eventually fell asleep, and woke up at about 11:30pm and had to go to the bathroom. My dad took her to the toilet, and then asked me to watch her while he made the bed (she had wet the bed before we could get her up and to the bathroom).

And then she had a seizure. She was sitting on the toilet, mostly asleep. She was holding onto the guiderail with her left hand, to keep herself upright. But her arm started to get shaky, and she started slipping. So I told her to let go of the bar, and held her upright myself. Then her throat started convulsing, and her eyes opened wide and rolled back, and she started shaking. I yelled for my dad, and we somehow got her into the bed (I remember my dad picking her up and carrying her like you would carry a damsel in distress), got hospice on the phone, and got her head up so she wouldn’t choke on whatever you choke on when you’re having a seizure.

After a total of ten minutes or so she came back to consciousness – she opened her eyes normally, instead of exorcist style, she was able to speak a little instead of having a spasming throat. She was able to fall asleep for the night after a few minutes time.

Then Saturday rolled around, and she was exhausted. She could barely get out of bed in the morning. She could barely stay awake in her chair in the living room. We used the bedside (or chair-side) commode instead of taking her to the bathroom because the bathroom was just too far. Every time she used the commode she was in pain – pain from being moved, pain from trying to sit on this awkward contraption, pain from not being able to sit up straight. We were even talking about a catheter, but she really didn’t want one. She took a nap in the afternoon (which she never does) because she was so exhausted.

And I thought that that was it. She’d fallen off the cliff. The descent was steep – steep and a little violent. This was what it would look like from now on – the bedside commode or a catheter, a barely responsive mom stuck in her hospital bed all day long. I knew it had to happen sometime, but I didn’t think it would happen so quickly. It was too fast, too frightening, too painful.

And then Sunday she must have landed on a trampoline that lives somewhere on the side of that cliff (see, really bad metaphor!). Because she bounced back. She’s still tired, still having a hard time speaking, still forgetting what she’s saying in the middle of a sentence. But she can sit up. She can go to the bathroom with relative ease. Her right leg still doesn’t work, but it works well enough to stand up as we transfer her from one chair to another. She’s back to what she was like before the horrible Friday, back to the slow decline we were expecting her to have.

And all I can do is suck in a deep breath – a breath of anticipation, to prepare me for the worst, but also a pausing kind of breath, because we still have more time.


p.s. I'm giving all this detail not to shame my mom, or to incite pity, or to gross anyone out. I'm giving all this detail because it's cathartic, and because there should be no shame in wetting the bed when you're dying from cancer and you can't control your bowels. I hope these details bring dignity to a woman who has lost control of her own body and who is living as best she can.

Marking the day

Today marks a year since Alex’s mom died.

There’s not much I can say, not much I can do. But Lex, I’m marking this day with you. I’m holding you and your mom and your dad and your brother in my heart. I’m remembering your mom’s life and her struggle and her death, and saying that she and your grief haven’t been forgotten.

And Alex, I pray that you see a hummingbird today. And just in case you don’t, I have one for you.

Gallows Humor

I’m feeling pretty morbid nowadays. So dark comedy really speaks to me. From the well timed dead baby joke to Seth MacFarlane’s quip at the Oscars that “the actor who got most inside Lincoln's head was John Wilkes Booth” (cue boos from the crowd and laughter from me), I’m really jiving with the completely un-PC nature of dark humor.

I try to hold back when I’m in mixed company, but it can be difficult. I’ve been so tempted to say, “I’m giving up my mom for Lent” whenever people ask me what I’m giving up this year. I also help up a sparkly black cocktail dress at the thrift store and asked my friend if it would be inappropriate for a funeral – it certainly wasn’t haha funny, but I chuckled.

So I apologize in advance if I make a somewhat inappropriate joke. And if you have a joke you’re thinking of telling me, and it leans toward the morbid, definitely tell it – I’ll probably crack up.

My dearest Susan

I found an old box in storage when I was rummaging around looking for old pictures of my parents. I can’t remember what it was labeled as, but it was an enticing enough phrase to catch my attention. I brought it back up to my parent’s condo and opened it one evening when my dad was putting my mom to bed.

In the box were cards. Greeting cards from all occasions – your more traditional card-giving holidays like birthdays, Mother’s Day and Christmas, and your less traditional card-giving holidays like Halloween. They were all cards that my mom had collected over the years. Cards from me and my sister (mostly handmade), and cards from my dad.

The cards from my sister and I were adorable, of course. Rough sketches, lots of glitter and crazy colored construction paper. Sweet that she kept them, but more mundane – the traditional childhood craft.

But the cards from my dad.

Each card started out with an address like “My dearest Susan” or “My precious Susan.” Each had a reasonably long (and mostly indecipherable – my dad has horrible handwriting) personal note written in them, next to the standard and cheesy greeting card sentiment. They covered the span of years and of holidays, and the spectrum from comedic to heartfelt. I avoided reading the indecipherable personal notes, so as not to spy, and so as not to be grossed out by the mushy things my dad surely wrote.

And of course, as I sifted through these cards, I cried. It was so beautiful to see how much my parents love each other – my dad in giving so many cards and writing so many loving notes, and my mom in keeping every single one.

I talked to my dad about it afterwards. He said she kept all of his, and he kept all of hers. They each kept these mementos of their love throughout the years – simple and beautiful reminders of their commitment to one another.

So Happy Valentine’s Day, Mom and Dad. Thank you for teaching me how to love.

A gift, maybe

As for inflicting our sorrow on other people, one does not want to go around blathering and crying all the time. But perhaps it is our gift to others to trust them enough to share our feelings with them. It may help them deal with some of their own.  

                 --- Martha Whitmore Hickman

I worry sometimes that this blog is too personal. I wonder if adding new entries and posting links for some of them to Facebook is me just being narcissistic. I get uncomfortable when the tears just keep leaking when I’m with other people, even if I don’t want them to. And to some extent these concerns are valid – this blog is really personal, and Facebook can turn narcissistic real fast, and other people feel uncomfortable around me when I cry.

But maybe that is my gift. Maybe that’s why I’m that crazy emotional person who cries when she’s happy, when she’s sad, and anywhere in between. Maybe my vulnerability, my arm-on-my-sleeve nature is something blesses my friends, family, acquaintances, and random people on the internet.

And maybe, just maybe, if I’m lucky, this blog won’t just be cathartic for me (which it is). Maybe it will also help others deal with their crazy, uncomfortable and vulnerable emotions too.