Chronic Pain

This Cosplay Photographer Uses Superheroes To Fight His 10-Year Headache

A cerebral spinal fluid leak led to a headache that never goes away. Imagining alternate universes through cosplay photography brings Shaun Simpson pleasure despite the pain.

Cosplay photography is a bridge that ties together my love of photography, and of all things nerdy. There’s a female cosplayer in the States who makes $100,000 a month on Patreon.When Shaun Simpson was in his early 20s, he started getting severe headaches. Usually, these were related to him working out or doing something strenuous, but one New Year’s Eve at a friend’s cottage he was leaning down to put something in the oven and almost fell in because the pain hit so hard. His doctor believed it was muscle related and suggested massage, then muscle relaxants. Another doctor told him to take Advil. None of these things helped and it took seven years and a move from the small town of Miramichi, New Brunswick where he was born, to the city of Halifax, Nova Scotia,  to find a doctor that ordered a CT scan and a neurologist appointment.

Shaun Simpson.

Simpson then discovered that he had Arnold Chiari Malformation, where the occipital bone of the skull grows in too far and puts pressure on the cerebellum. Our brains are supposed to float freely in our skulls, but Simpson’s was getting caught on that piece of skull bone and that’s what was causing the headaches.

In most cases, this is something that’s discovered at birth, or sometimes in-vitro, and it can be a severely debilitating or even fatal condition. Simpson’s was a minor form of the condition, without a noticeable misshaping of his skull, which is why it had gone undiagnosed for so long. He had a decompression surgery where they removed part of his skull bone and patched him up. Unfortunately, the patch didn’t hold and he has had a CSF (Cerebral Spinal Fluid) leak ever since. While the unending headache is the worst of Simpson’s symptoms, the CSF also causes dizziness, hearing issues (muffled sounds, tinnitus), blurry and double-vision (causing depth perception/balance issues), light and noise sensitivity (photo- and phonophobia), and neck pain/stiffness. A CSF also brings a highly-increased risk of contracting meningitis.

Simpson is now 38, and there have been several unsuccessful surgeries following the one that caused the initial leak. Simpson jokes that his headache turned 10 years old in February 2018.

You’d never know by looking at Simpson that he lives with chronic pain, and the many fans of his cosplay photography (he happily describes himself as a geek photographer) have no clue of exactly what it takes for him to make the alternate universes he creates with his camera and Photoshop skills. Cosplay, if you’re unfamiliar with the term, is the practice of dressing up as a character from a movie, book, or video game, and those who do it often take it very seriously indeed. We asked Simpson to explain how he manages, and creates such beautiful work despite the pain.

How did it feel to finally find out there was something behind the headaches?

It felt so good to know that I wasn’t crazy. It was also really bizarre because about the same time my friend Chuck went into see a neurologist and got diagnosed with a brain tumor, and ended up dying about eight months later. He got his diagnosis first and I just kept thinking, “Please don’t let it be that.”

And you were told there was an effective treatment for your condition?

I was told that there was a 99% success rate with the surgical treatment. They would remove part of the bone and it would fix everything, and I wouldn’t have any headaches anymore. The neurosurgeon said it was a relatively easy procedure and I wouldn’t have anything to worry about, the worst that would happen is that I would have a spinal fluid leak and those are easily treatable. I still had headaches after the surgery, and it took them almost a year before they realized that it was not just a side effect of the surgery. I had multiple spinal fluid leaks. This was determined through a series of spinal taps to determine spinal pressure – these are not a lot of fun – then I had three procedures where they tried to patch the leaks. Those didn’t work, and the headaches are now worse than they ever were before the surgery.

A riff on the post-apocalypse RPG Fallout, edited by Simpson.

Can you describe how bad the headaches are?

It’s like a blackout pain. You almost lose consciousness from that level of pain, and I can’t really think of anything that compares to it. They refer to it as a spinal headaches, these start in the brain as a pressure issue and then mess with your entire system so you pretty much forget how to function. My condition has many of the same symptoms as a brain injury or brain damage, such as double vision or losing balance and I get tongue-tied occasionally.

You work though, and do photography despite this.

I have a steady government job as a web analyst, and my photography has become more of a hobby lately because of my health but there was a point where I was considering making it my full-time gig. It was just way too hard on my head to keep up with the level of physical work it required. I’d be shooting at the studio but then wouldn’t be able to concentrate properly on my day job or edit photos until the headache went away. I was starting to use a lot of sick time from my day job because I couldn’t handle the headaches the photography was giving me. I had to make a choice to focus on my day job over being in the studio shooting, because with that job came medical benefits and paid sick days, which I have to rely on.

Should you still be doing photography?

You have to do things that are important to you, and photography is what I’m passionate about

I’ve had a lot of doctors look at my case over the years and they all say that I should be staying in bed and not getting out of it unless it’s absolutely necessary. That’s a ridiculous thing to tell somebody in their mid-20s, and even now I’m not ready to give up like that. You have to do things that are important to you, and photography is what I’m passionate about. My day job is very technical and logical and when I get out of that I want to be able to do something creative. I need that creative space to relax in. I just concentrate on the shoots that bring me the most pleasure these days, and skip the corporate photography jobs that I used to take.

A cosplay Harry Potter by Simpson.

Why the interest in cosplay?

I’ve always been a huge computer/sci-fi geek, and I’ve been reading comics since I was a kid; I’m still part of a monthly graphic novel ‘book club’. Cosplay photography is a bridge that ties together my love of photography, and of all things nerdy.

Cosplay photography is a bridge that ties together my love of photography, and of all things nerdy.

Once everything has been photographed, I’ll sit in front of the computer for hours to recreate scenes and special effects around the cosplays. The editing process is encompassing, time seems to move at a different pace, and it helps to separate me from some of my CSF leak symptoms.

The part that means the most, is being able to help fellow geeks really see themselves as the characters they love, complete with superpowers. Geeks don’t always have the easiest path in life, navigating through social norms and expectations; if I can help bring a smile to someone’s face by giving them some photoshopped superpowers, and helping bring their character to life, then the effort is more than worth it.

How did you get into taking these kinds of photographs?

I met my friend Mike Hamm at a Halloween party one year where he dressed as Robin. I took a few shots that night, and he started getting some online fame from those so we talked about doing other shoots together. Images from those went viral, and he became part of the international cosplay model circuit. He gets invited to cosplay conventions all over the world. We’ve done 10 shoots to get content for him, and I shoot with a bunch of other friends who are into cosplay, some of whom worked on costumes and props for movies.

I had no idea that there was an international cosplay model circuit until you said that.

Yeah it’s crazy. There’s a website called Patreon where people can subscribe to see exclusive content from cosplayers and other creative people, and there are few people on that who are making their entire salary and living wage off it. Mike uses that site to make an income, and this all came from us taking those photos. I know there’s a female cosplayer in the States who makes $100,000 a month on Patreon.

Simpson’s take on Superman, protrayed here by Matt Aucoin.

Do you get offers to go to these conventions to shoot?

There’s a female cosplayer in the States who makes $100,000 a month on Patreon.

Yes. I have people contacting me because they want to do the same thing, but a lot of people don’t get it, they don’t realize the work that goes into these cosplay shoots. They think I must just have a closet full of superhero costumes that they can throw on. It’s the cosplayers that actually build the costumes themselves and put all that together.

I do get a lot of people inviting me to California and other places to shoot with them. If I wasn’t sick I would definitely take those opportunities. If I ever get my brain fixed, I’d love to be able to do that; traveling around with my friends taking photos all over the world and get booked to do shoots. I have a lot of limitations now so I just have to focus on what I can do.

No one looking at you would realize there’s anything wrong. Is that an issue in itself?

I feel like people don’t always believe it like I would like them to. When you tell people you have a bad headache they don’t really get how bad it could be. Up until five years ago I was being prescribed morphine derivatives as my main painkiller. I was just constantly pumping them into my system to keep the pain at bay. People believed me then because it always seemed like I was out of it. Finally I went to my doctor and said I can’t live like this taking these pills, because they’re wrecking my system. I went to a pain clinic and talked some other doctors and eventually got moved over to medical marijuana as a pain treatment. That works way better for my pain with much fewer side effects.

Problem is, as soon as people find out that is what you are on they suddenly have a different view of what is or isn’t actually real. I get a lot of people who think that I’m joking or just doing it for the medication, like I’m faking it or something so I can get high. That’s really frustrating. Before my prescription I had never even tried marijuana before. I didn’t even drink alcohol until I was 24. I was such a goody two-shoes.

We’ll be honest: we don’t know who this guy is. But Simpson made him look cool anyway.

Are there any other treatment options?

They could try and patch the leak again, but it is risky and there’s no guarantee it will work. Because my leak is around my C4 vertebrae, if you mess up when you’re in there you risk severing the spinal cord. They need to keep me awake during the procedure to make sure that I don’t die or end up paralyzed. They’ve done that three times and it’s such a bizarre procedure, because the drug that they give you is so strong. Imagine the wildest night of partying where you drink too much tequila, you’re kind of in that state, this spinning blurry place where you can’t focus or anything and everything is a bit of a joke. You’re messing around and they’re telling you to stop moving, but you can’t tell somebody who’s drunk half a bottle of tequila to stop moving. It’s pretty nerve-wracking for everybody else in the room, though I’m flying high at that point.

I just have to wait until they find a new technique or procedure to patch it up. I went in to see a doctor at Christmas time and I asked if they had come up with anything else to fix this. His literal response was, “Ha ha ha, no. It takes a while.” I said it had been 10 years but he said it would take longer than that.

Basically every time this happens I just have to wait for my spinal fluid to replenish itself for the pain to stop, and that tends to take about 24 hours. For now, I’ve learned to negotiate with the pain a little bit and work my way around it. You know what you can do to alleviate the symptoms and when to just stop and be quiet in the corner somewhere when it gets too bad.

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