i love ‘running with scissors’

Running with Scissors (memoir)

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The Professor and I headed out to local big box bookstore today to spend the gift card that was sort of an early birthday present for me. (It’s complicated.) The book I planned on buying—”Extremely Loud and Incredibly Close” by Jonathan Safran Foer—was not available at my local big box bookstore, so I whipped out my trusty iPhone and looked for authors similar to him (and, incidentally, Kurt Vonnegut).

And I’m super glad I did.

One of the first hits was for Augusten Burroughs‘ memoir “Running With Scissors.” I’m not very far in, as I’m in the midst of typing up meeting tape and then writing an article on said meeting, but I’m loving it so far. Why am I telling you this? Imagine my surprise when, on page 12, there’s a mention of psoriasis. No, really:

My father was otherwise occupied in his role of highly functioning alcoholic professor of mathematics at the University of Massachusetts. He had psoriasis that covered his entire body and gave him the appearance of a dried mackerel that could stand upright and wear tweed. (Burroughs, p. 12-13)

While not exactly the kindest description of someone with psoriasis, I have to admit that certainly conjures up a vivid image—and one that’s not entirely unrealistic.

Just a few paragraphs later, we learn Dad has arthritis, and—though it’s not explicitly stated—it’s likely he has psoriatic arthritis.

My father had a bad knee. Arthritis caused it to swell, so he would have to go to his doctor and have it drained. He limped and wore a constant pained expression on his face. ‘I with I could just sit in a wheelchair,’ he used to say. ‘It would be so much easier to get around.’

Dad may not be the best representative of us chronically ill, but it’s better than nothing. And, since it’s a memoir, it’s not like Burroughs can change his dad. Regardless, it was nice to see someone with psoriasis and (psoriatic) arthritis in the popular media. So, kudos to you, Augusten Burroughs. And thanks.

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#HAWMC day 27: quotable

I love a good quote. The right one can turn one’s day completely around. It can make you feel strong in the face of a bad day or completely turn your attitude around.

One of my most well-read posts was one where I wrote about the “Litany Against Fear.” It’s one of my favourite posts, so here it is again, for your reading pleasure:

Fear is a funny thing.

Since I am, truth be told, a big nerd, the first thing that comes to mind when I hear or see or write the word fear is a passage from Frank Herbert‘s “Dune.” If you’ve read the book, I’m sure you know the one I’m referring to:

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

I won’t lie: Fear is a big part of my life with chronic illness. A lot of what I’m dealing with is unknown: How will I react to [insert medication here]? Will it help me, do nothing, hurt me, or some combination of the three? Is how I’m feeling right now my new normal? Will I ever go into remission? For how long? Will I get worse? Will there be better treatments or, dare I say it, a cure in my lifetime?

The answer to all of those things: I don’t know. And, to be honest, that really bothered me for a long time; in some ways, it probably always will. But nothing is guaranteed for anyone. No one can say for certainty what the next year, next month or even next minute will look like.

But for all of that, I don’t think fear is necessarily a bad thing; without fear, there would be no opportunities for courage. Chronic illness, like fear, need not take away our hopes, loves, dreams.We can be brave and still chase down what we want. Sure, it might look a bit different than we’d hoped, but we can get there. And that realisation—that I can still expect great things from myself—that was huge. Giant, even. And so very precious.

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
—Nelson Mandela

#HAWMC day 22: more cowbell

There are so many things I wish were actual factual prescriptions for psoriasis or psoriatic arthritis. Take shopping, for instance. I wish at my appointment next week, my NP would turn to me and say, “Nessie, you know what will cure what ails you? A trip to the mall or that awesome thrift store or the flea market. Girl, you need to get your shop on.”

Spending the whole day in bed reading would be another kick-butt Rx. “Nessie, no more of this working hard nonsense. For the next week, you need to spend the day in bed, reading all those books you’ve started but haven’t had time to finish.”

Ooh, I wish eating red velvet cake (or, better yet, red velvet cupcakes!) was a scrip. “We need two red velvet cupcakes over here—STAT!”

Getting dressed up and going out somewhere fun—like dancing or to a show—why can’t that be a prescription?

Clearly, we all need to ditch Dr. No Fun and start listening to Dr. Awesome—the kind of doc that prescribes stuff like I mentioned above. But we all know pretty much all of those things would not really make us feel better. (Well, not for very long, anyway. I’m looking at you, red velvet cupcakes.)

What do you wish could be a prescription? (More cowbell, definitely.)

till we have faces

I am a little bit obsessed with C.S. Lewis.

I grew up on the Narnia series, and, now that I’m older, I’ve found myself really enjoying his other works — “The Problem of Pain,” “Mere Christianity,” “The Screwtape Letters” and, of course, “Till We Have Faces.” I’m currently reading the latter book — a retelling of the myth of Cupid and Psyche from the perspective of Psyche’s older sister — and the imagery and language in the book are really striking. It’s quickly climbing the list of my favourite books, and I can tell it will be one I will want to read over and over.

I can see why the myth would have haunted Lewis, as so many of the reviews I’ve read of that book claim it did. It’s really kind of a tragic story, and the spin he put on it is so poignant and touching. I won’t ruin it for those who haven’t read it, but if you love books and you love words, this is definitely a good read.

I have always been someone who loved to read, and I never really understood people who don’t like to read, who don’t want to lose themselves in books, who only want to read a book once and no more. Ever since I was a little girl, I’ve always enjoyed burying myself in the lives of others — and that’s always meant books to me. Honestly, I hope it always does.

indoor fireworks

That last post was a wee bit self-pitying, so I decided to post some fireworks instead. Because, as everyone knows, fireworks are the best way to end a pity party.

Happy (belated) Canada Day and Independence Day to my Canadian and American readers!

So, this is my life. And I want you to know that I am both happy and sad and I’m still trying to figure out how that could be. — “The Perks of Being a Wallflower” by Stephen Chbosky