Learning to Grieve

My dad is dying.

In some universal sense I always knew I would have to say that at some point in my life, but it feels different when I’m actually facing it. I mean, parents live forever in a way that normal human beings don’t, right? No? Oh. Anyway, my dad has a rare neurological disorder called PSP (progressive supranuclear palsy) that often presents like Parkinsons but it specifically deteriorates body and eye movement, and there’s no treatment or medication. Eventually people with this disease can’t breathe or swallow properly, and cannot walk or control the body’s movements properly. It’s not something I want my dad, or anyone, to go through, especially when we’re forced to face the end of his life approaching rapidly.

Grief is an odd beast. Sure there are stages of grief, but no one tells you about how you can grieve for someone who is still alive. My dad was my comic relief in life. He entertained my weird ideas more than any other human ever would (or probably should). I have cassettes of us on road trips going to visit my brother in college, and while talking on the tape, I suddenly break into a gameshow host impression.

I say, “Hi ma’am, I’m Dr. Gameshow! We’re glad you came on the show today, tell us a little about yourself,” and I pointed the recorder at my mom.

She says, “What in the world are you talking about? What show?”

I say, “Okay, thanks for being here. Sir would you like to tell us a little about yourself before we start the game?”

Without missing a beat my dad says, “Hi Dr. Gameshow. Yes, my name is Bob, I have three kids and a pet bear, and I’m really happy to be here.”

I say, using a Minnesota/North Dakota accent for some reason, “They-ah-t’s great sir. Doncha know, we’ve got some killer prizes on the show today. Your pet bear will be so gee golly thrilled to see you after ya win these gosh durn prizes!” We proceded to put on an entire gameshow, complete with me cutting to my mom periodically, who consistently refused to be weird with us. Then when the joke ran its course we just went back to driving like nothing had happened. That recording is on a micro cassette and I almost didn’t play it, fearing I would break it, seeing as it was about 27 years old. But it held up and I’m so happy I got to hear it again and hold onto that memory.

It’s hard watching this disease take my dad from that person who could run with whatever I threw at him as a kid and even as an adult to someone who can no longer get himself around the house or focus on an entire conversation. He has days when he can’t get himself to the bathroom and back, and he used to be able to dismantle a broken toilet, rewire an electrical outlet, repair drywall, and almost everything in between at a moment’s notice.

Mentally, he’s the same man he always was, and that’s the hardest part of this disease to deal with. His body is failing him, and it affects every part of his life. It affects what he’s able to eat, how he sits, his sleep schedule, how much energy he has/doesn’t have, how he talks to people/can’t talk to people, how his daughter, who at age 5 he used to help to the bathroom in the middle of the night because she was scared to leave her room, has to help him to and from the bathroom. Physical illness affects mental and emotional health, always. He’s depressed and anxious for the first time in his life. It’s understandable, but it’s difficult to watch him go through this, especially when he seems just a little different every time I see him. We still have our rapport though, even if it’s modified now. Our conversations go something like this:

Dad:  How does blue tooth work?

Me: You have to pair something with something else and they talk to each other. I’m really not good at technology questions.

Dad: Don’t sell yourself short! You’re great!

Me: Okay fine, I just don’t like teaching technology to old people.

Dad: Well who does? Now how do I turn on the internet?

Me: No.

Dad: Hmmmmmmm…

Grief for a parent is a unique grief, especially when you start grieving a parent while they’re still alive. Because the disease seems to progress slightly every time I see him, he has new challenges every week. Every week it feels like the grief stage cycle starts over anew. But he’s the one telling me that I inspire him. He says that watching me struggle with type 1 diabetes and depression over the years, seeing how I pushed through and worked hard to accomplish things in my life has helped him realize that he can handle living with this disease. He even told me that he was always intimidated by me, even as a kid, because I was always so strong. He’s the one telling me this! It’s just so discouraging to know that he’s getting worse and suffering and there’s absolutely nothing I can do about it. But seeing that he’s still able to smile and be funny, and knowing that somehow, just by being myself, I was able to help him takes the edge off a tiny bit.

It’s not about me, though, or making me feel better. It’s just a type of grief I’ve never known before. The stages of grief are real and true and all that, but they do not go in order. I have days where I snap-to in the middle of whatever I’m doing, and I’m not sure what’s real or what isn’t. Like the seconds after waking from a dream, but I could be in the middle of a conversation with someone, or driving, or walking the dog. I still don’t really understand grief other than to know that it’s constant, and that it’s a strain on my already tenuous mental health.

That’s not to say that I’d change anything, though. I’ve realized how precious the time I have left with my dad really is. Even if we can only say a few words to each other, or even if the only time I see him that day is to help him into his pants. There will be a day sooner than anyone (except him) wants when I won’t have the chance to do that anymore, so I will be honored to spend whatever time I have with him.

dadchipmunk

Journals From Past Allison

Journaling has been an important survival tool for me ever since the year 2000 when my therapist at the time turned me onto it. I have saved all my journals since that year, and sometimes I like to go through them all and find the same date in different years and read them. I do this more out of curiosity than anything else, but it can also help me track my progress, or lack thereof, through the years. The evolution of mental illness is fascinating, as is my level of denial in the early years. But simply because I kept writing, I kept following hope.

All of my journals either have titles or quotes at the beginning of them, like they were books. And they kind of were because I would fill every page of every journal I ever wrote in. I’m not sure where those bragging rights would be relevant, but that’s kind of impressive, right?

Here are some of the quotes in the beginning of my journals over the years:

For a second, two seconds, they had exchanged an equivocal glance, and that was the end of the story. But even that was a memorable event in the locked loneliness in which one had to live.
-George Orwell, 1984

Forget about what you are escaping from…Reserve your anxiety for what you are escaping to.
-Bernard Kornblum,The Adventures of Cavalier and Clay

Pretty Pink Suicide Notes
– journal title, Allison B. Hollingsworth

I feel a little down today
I ain’t got much to say
You’re gonna miss me when I’m not there
And you know I don’t care

Life is hit or miss, and this
I Hope, I Think, I Know
And if I ever hear the names you call
If I stumble, catch me when I fall
‘Cause baby after all,
You’ll never forget my name
You’ll never forget my name.
-Oasis

There are two ways to look at life…The first view is that nothing is stays the same and that nothing is inherently connected, and that the only driving force in anyone’s life is entropy. The second is that everything pretty much stays the same (more or less) and that everything is completely connected, even if we don’t realize it.
-Chuck Klosterman, Sex, Drugs, and Cocoa Puffs

For Posterity
– journal title, Allison B. Hollingsworth

I’ve compiled a list of excerpts below that Past Allison wrote in a gesture of recognizing her journey. I hate the word journey, but I love Past Allison. At least I’m learning to.

Continue reading “Journals From Past Allison”

The Sticker Shop Is Open!

The Sticker Shop is now open! I am so excited for the opportunity to share these stickers with you. We all need Stigma Busters like these around us at all times.

All proceeds from he sales of these stickers, with the exception of the Semicolon Sticker, which will go to Project Semicolon, will go toward helping me pay down my hospital bills from my most recent psych hospital stay. So your support is greatly appreciated. Plus, stickers are awesome. That’s just a fact of life.

Shop Now!

Coming soon: sticker packs and sticker sheets – stay tuned!

Enjoy!