6 Weird Realities of My Life With an Awful Superpower
Superpowers are awesome. But did you know that they can exist in real life? They're just not quite as comic-book-worthy. Take me, for example. I have Ehlers-Danlos syndrome, a little-known disease that causes your bones, joints, and skin to always be growing, and to never truly settle into place. This has bestowed upon me many abnormal abilities, none of which would probably help in saving my city from Dr. Prehistoria and his sinister robot dinosaur army. But hey, you gotta try anyway! My name is Stephanie Erdman, and here's my terrible application to join the Justice League:
Giant Stature (Along with Giant-sized Growing Pains)
Usually, when you see super-growth in comic books, it's folks like Plastic Man, Mr. Fantastic, or some vaguely racist Native American caricature shouting power words and instantly growing 75 feet in a second. Strangely enough, they then proceed to move about and fight, as though having every inch of your insides stretched like a Caramello bar wouldn't just leave them a giant sobbing wreck, screaming on the pavement.
I know this because I, too, have hyper growth powers. I'm 6'2", which is pretty damn tall for a woman. And even though I'm 28, I still have "growing pains," and I might end up taller by the time you're done reading this article. That's because with EDS, your growth plates simply push out more and more bone over time as opposed to stopping at age 18, like they do in most people. My growth plates are like old professors with tenure who suck at their job but refuse to retire, bringing the entire student body down as a result. Or in my case, up up and away.
Most teens grow an inch or two during their growth spurts -- mine were typically measured in half-feet. The worst was the summer between my sophomore and junior years of high school, when I went from 4'11" to 5'10" in just three months. That was probably the most pain I've ever experienced in my life. I have permanent stretch marks on my torso from my body expanding faster than evolution ever intended.
And it made shopping for clothes a total party, especially since my waist didn't expand along with the rest of my body. Ask a Walmart worker for jeans in a 32 waist and a 38 inseam -- they'll just shake their head and walk away. Partly because they work at Walmart, and are not super helpful to start with, but also because you may as well be asking the impossible. See, I quickly learned that when they say "clothing for tall women," they mean 5'8", not 6-foot-plus. And since The Man still insists that we not walk around naked in polite society, I was forced to either make my own clothes or wear men's clothing. That's right, you could have naked giantesses wandering around right now if not for the stupid government. Write your congressman.
Insane Flexibility and Near-Painless Dislocation
Right around the time I turned into Stretch Armstrong, I also discovered that the tissues in my joints were not gluing everything together as they normally should. This resulted in Elastigirl-style flexibility and joints that dislocate more frequently than a GPS narrated by Christopher Walken. Observe, but first turn your volume up for maximum crunch.
That's just the start. When I say I'm flexible, I mean I'm basically a contortionist. Martin Riggs escaping from that strait jacket in Lethal Weapon 2 is amateur hour stuff. As I mentioned earlier, I'm WNBA tall, yet I can twist and screw myself (not that way ... as far as you know) until I can fit inside a small suitcase. One time, I slid myself inside a tuba case simply because my friends dared me. They closed the top, locked it up, and applauded. Unfortunately, they didn't think to immediately open it and let me out, because I came within seconds of getting thrown into a bus along with the other luggage. I guess what I'm saying is: step up your game, Riggs. You're embarrassing yourself out there.
I may not be able to stretch around the block, but at times, it is like a power. Thanks to my knack for dislocation, I have never actually broken a bone, despite being in multiple situations where I absolutely should have. In college, I was in a nasty car accident that should've cost me my lower leg. However, my knee simply dislocated, and my floppy leg survived fully intact. But while extreme dislocation and flexibility is good fun, helpful in tough situations, and more than a little kinky when you're in the right mood, you have to remind yourself that some things in life are actually painful to other people. When I see an athlete on TV tear their ACL, everybody in the room cringes except for me. Suddenly I look like some sociopathic, inhuman monster. It strangely does not help when I start twisting myself into a pretzel by way of explanation.
Super-Stretchy Silly Putty Skin
Perhaps you've seen this gentleman on TV:
That's Garry Turner, holder of the Guinness World Record for stretchiest skin. Obviously, his is an extreme case if it can get him into the record books, but if he's the Michael Jordan of EDS, then I'm at least the Scottie Pippen. I (and other EDS folks) can manipulate ourselves like that because our skin lacks the collagen necessary to provide the structure and solidity found in regular skin. In fact, if we don't know our limits and stretch too far, we could tear the skin clean off. Though imagine the looks on your friends' faces when you say "check out this trick I can do" and then pull half your arm-skin off right in front of them.
My skin isn't just stretchy though -- it's also pliable. Remember how you would roll a wad of Silly Putty over the Sunday newspaper and make a copy of that week's Beetle Bailey, because for some reason you needed more Beetle Bailey in your life? My skin is sort of like that. Pinch it, and it will keep your finger indents for several minutes. Press a gingerbread man cookie cutter onto it, and I will have a snazzy new gingerbread man tattoo. Slap my ass and the cheek will look like Andre the Giant got lusty.
The Obligatory Superhero Weaknesses
Thanks to EDS, I'm klutzy and awkward almost all the time, and not in an adorkable Zooey Deschanel way. EDS brains are prone to short-circuiting, which causes them to perceive the body as a floating, limbless torso. This cerebral blindness often results in our being completely unaware that our heads, arms, and legs are actually a part of ourselves. As far as my brain is concerned, most times I'm just a disembodied torso with boobs, like a serial killer's wet dream.
I trip over everything, run into doors, get impaled on every table edge that crosses my path, and have slammed my fingers in so many car doors that it's a wonder they're not permanently crooked. I'm terrified of running into one of those sobriety checkpoints. Even when stone-cold sober, those things are a terrible ordeal for people like me. Walk in a straight line? No thank you, officer. Stand upright on one foot? What are you, insane? Touch your nose with alternating fingers? Mind if I just poke myself aggressively in the eye with alternating fingers, instead?
And what's more fun than being ultra clumsy? How being ultra clumsy and nearly blind? Imagine Daredevil, only without any heightened senses. So like ... just blind, basically. That's me. Debate continues as to why this happens with EDS sufferers, though it's likely either because of the lack of focusing muscles in my eyes, or a misfire in the occipital lobe of the brain. It's intermittent, too. My eyesight is so bad that I pretty much see the world in 2-D. And then sometimes I don't -- it's like someone stealing your 3-D glasses halfway through the movie. When driving, I have to memorize the shape and size of every vehicle in front of me so I don't accidentally rear-end them when my eyes flip out. Because if I do, and I get out of my car all stumbling and poking myself in the eye, I win a not-free, no-expenses-paid vacation to the drunk tank.
A not-insignificant portion of my daily regimen simply goes toward not falling apart like a Jenga Tower built by a drunk. Because my tendons and ligaments are more pulled taffy than rubber band, my muscles don't hold my skeleton in place so much as I do. Very early on, I learned to memorize every detail of the K'Nex set that is my interior, since an unexpected cough or sneeze when my guard is down could easily dislocate a rib or five.
You know what requires your guard being down? Sleep. Whenever I rise to greet the day, I typically find I'm all over the place. Literally. You know that scene from The Godfather where the guy wakes up next to a horse's disembodied head? Imagine that, only it's your own arm, dangling helplessly inside its baggy skin jacket until you unceremoniously pop it back into place. That's my routine every morning: stretching, flexing, and reassembling myself into something resembling an actual person instead of a Blue Light Special T-1000.
The Immunity to All Pain ... Medications / The Ability to Tap Into the Secret Side Effects of Prescription Drugs
Pain and EDS have a strange relationship. On the one hand, stuff like dislocated joints and stretching your skin until you become your own raincoat usually doesn't hurt. On the other hand, everything else does. I'm the anti-Wolverine: my wounds and scars take so long to heal that I forget how they got there in the first place.
And good fucking luck finding medication to help you deal with the pain from those wounds. EDS patients have very strange reactions to medicine. We're the ones who experience those rare side effects that commercials are legally forced to mention, even though nobody seems to get them. "Try our new grape-flavored cough medicine! May cause melted kidneys."
You laugh at that, but the message is meant for me.
I cannot take Benadryl, because my condition triggers a super-rare side effect known as "tripping goat balls." Usually, you need to down an entire box to experience Benadryl's hallucinogenic effects (not that you should do this, because don't do this). In my case, all I need is one pill. During my freshman year of college, I got sick and the RA gave me some Benadryl Cold and Flu. When she came back to check on me, I was wrapped around the legs of the futon, screaming that the floor was falling away from me. Though in my defense, it totally was.
The most common reaction, though, is not reacting at all. A lot of medicines, particularly the morphine and opiate derivatives that help manage pain, simply have no effect on EDS patients. I don't feel Vicodin, which would've been awesome to know before recruiting it to battle a gnarly case of E. coli. And if I catch poison ivy, it puts the lotion on the skin, but the lotion doesn't do shit. A friend mine also has EDS. She doesn't react to the anesthetic lidocaine, and if you've never gone to the dentist and stayed awake feeling absolutely everything, you lose the right to complain. Also, the epidural they gave her during the birth of her daughter did absolutely nothing.
Admittedly, it's hard to think of a good use for that superpower. Maybe there's like a drug-themed villain who puts all the other heroes to sleep, and it's up to the EDSquad to take the Mighty Morphine Power Ranger down?
The Mandatory "Hero Loses Their Powers" Story Arc
Every decent superhero has a weakness that can drain them of their powers. Superman has Kryptonite, Green Lantern has the color yellow, Wonder Woman gets tied up by dudes, and EDS people have arthritis. Some weaknesses are sexier than others. With non-EDS patients, arthritis over-stiffens joints. In our case though, it pretty much brings them up to normal levels. Suddenly, our joints actually join together for once, and our limbs finally start behaving like proper limbs instead of rebellious noodles.
Here's a sentence you won't read often: arthritis has already started in on me, and so far it has been a godsend. I can finally grip a pencil without dislocating the end of my finger. Chronic pain can develop, but eventually I hope to get to the point where I can clap my hands without devolving into a wacky waving inflatable arm-flailing tubegirl. That being said, time won't steal away all my powers. I'll still have stretchy putty skin (combined with Grade-A grandma wings perfect for swinging all those grandbabies), and my eyesight will be as shitty as ever -- probably moreso with the normal ravages of age. I'll still be clumsier than Dick van Dyke in a room full of ottomans, and I'll still have the healing powers of Glass Joe. Plus I'll have to continually remind myself that bones can break and dislocations hurt like crazy. But that's okay -- every great hero has to overcome great obstacles. It makes for dramatic storytelling.
What do you say, Justice League? Are you going to start working on my spandex leotard yet? I wear a 32 waist, 38 inseam. Yes, 38. What do you mean you don't have one? Look in the back, goddammit.
Author's note: I also wish to recognize that there are also several terminal forms of Ehlers-Danlos syndrome, and my experience isn't the same as that of people with those forms. Also, invulnerability to pain meds has actually led to suicides, because the disease becomes impossible to handle, leading some of us to self-medicate. Sorry to save all the bummer for the end.
Stephanie spends her days holding it together and fishing grossness out of vacuums and pursues a Masters degree in English by night. Please direct hate mail (or accolades) to Facebook or Twitter where you can also see brain-ramblings and pictures of her dog. Jason Iannone writes columns, edits articles, does layout, and interviews people, very few of whom call the cops on him. He Facebooks and Twitters like a man possessed by a really apathetic spook.
For more insider perspectives, check out 4 Things Nobody Tells You About Food Allergies. And then check out 23 Horrifying Diseases You Won't Believe Existed.
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