Bad Pain Days And Teaching Moments

For those of you who are new here are a few key things you need to know to make it through this post:
– I was born with a genetic mutation called Ehlers-Danlos Syndrome. My collagen is a mess. I’m hypermobile. I can dislocate any joint with ease. I’m usually in a lot of pain.I was diagnosed at 11 and I’m now 35. It hasn’t killed me yet, but sometimes I wish it would.
– I am a Young Women’s Counselor for the Church of Jesus Christ of Latter-Day Saints (LDS/Mormon), meaning I teach kids ages 12-18, specifically working with the young women, but advising all of them. It’s like the equivalent of a Youth Pastor in most evangelical churches.
– My personal pain scale has natural childbirth (kidney stones for those who haven’t had pregnancies) as a 1. My everyday pain is a 2-3, which means multiple dislocations that would put the average person in the hospital on a morphine drip.
– Because of another fun genetic mutation my body does not process most pain killers. Aspirin and Tylenol? I thought those were placebos. Morphine? Might as well have an IV of sugar water. All the drugs they give you at the hospital for pain? None of them have ever worked.
– This isn’t a post about religion, so you’re perfectly safe reading on. ūüôā

Here’s what happened on Sunday…

Sunday morning I woke up in agonizing pain. Somewhere around an eight on my pain scale. Last time I hurt this bad I threatened to buy a gun and shoot myself in the hip because three consecutive doctors refused to believe I was in pain. After finding a doctor who believed me, we found I’d dislocated my hip and knee and both had been wrongly placed for several months. I haven’t been in this much pain in almost a year. Physical therapy and a very careful regime of self-care that involves heating, icing, massaging, and using electroshock therapy usually keeps me mobile.

But I woke up in pain, and I couldn’t stand up.

You may have had something similar. Even if you don’t have kids and a class to teach in two hours it’s not a fun experience.

My physical therapist has a series of stretches I do multiple times a day to keep my muscles from cramping, locking up, and ripping my limbs from their sockets. I tried those and found my entire leg was locked up. Tip of my toes to the top of my hip, all cramping. Remember getting a charlie horse in gym class where your calf muscle cramps up? Imagine that, but with every muscle in your leg. Yes. Ouch.

My best guess is that something dislocated, pinched a nerve, and sent the muscles into a death spiral while I was sleeping. But who knows.

It took an hour of massaging and heating my leg for me to be able to stand and walk slowly.

As my muscles warmed up, I felt well enough to head to church. So I packed up the kids, headed to church, and went to teach my lesson.

Now, I won’t get into religion here because I know not everyone will agree, so you’re safe there. But it’s always interesting when you have an invisible disability and let people know about it.

Over the years I’ve learned not to be shy about my pain. Smiling through it does not make anything better. I have a short temper naturally, and when I’m in pain it’s worse. No amount of lying is going to make things better. So my policy is to let people know I’ve had a dislocation, I’m in pain, and that I won’t be putting up with any nonsense today, thankyouverymuch. The first time I do this to anyone they tend to look askance, but once they realize I’m not joking, they adjust. Usually… some of them don’t, but we don’t worry about those people, do we? We do not.

Anyway, by the time we hit the end of church I had propped my bad leg up on a chair and I was getting curious looks from my teens.

This is where the teaching moments are, at least for me. The girls there today were young, 12-13, and most of them haven’t dealt with someone who has a disability like mine. They’d seen me dancing on Tuesday, and Sunday I could barely walk. Adults who have seen this often think I’m faking. Because… why wouldn’t they? If I could walk well one day why on Earth wouldn’t I be able to the next? Is that how diseases even work? [SPOILER: that’s exactly how disabilities like Ehlers-Danlos work. It’s one of the reasons people who can walk also have disabled parking passes. Because – surprise! – we have bad pain days.]

Teens are a naturally curious lot, so I explained to them what happened. I explained I have bad days where it is hard for me to love. I explained that I have days where I can be fully active.

We plan on hiking this summer. In fact, I’m going hiking with my sons Cub Scout troop on Saturday.

But today I couldn’t walk.

And that too is a teaching moment.

Bad things happen. Bad days happen. Bad years. Bad lives. We all have times where we can’t move. Whether we are physically or mentally stuck, we sometimes find ourselves in a situation where we’ve lost control. Where something bad has happened and we can’t get to the next part.

Even with an action plan (I spent all day trying to reduce my pain with minimal results) the bad thing doesn’t vanish overnight. It’s not fun, but it is life. And, when you hit the spot I was in, you only have two choices. You either deal with it, or you die. It’s really simple. And I won’t like and say I don’t sometimes feel depressed or suicidal on bad pain days. There is nothing noble or inspirational about being in the kind of pain I’m in.

But I came home cheerful anyway. Because I’d been able to advocate for people like me. Because I was able to help people who will hopefully never be in a situation like mine develop some empathy. Because the teens I talked to today won’t be the adults who look at someone and say, “You’re faking it. You can’t really be that sick.”

They also learned that if they do have a day like that, if they’re ever disabled or in pain, that someone they know has been there. And they’ve seen an example of someone surviving and living with this. It was disability rep, pure and simple.

It’s always tempting to hide away on a bad pain day. To lie to people and say, “It’s not that bad.” Doing that leaves everyone happy for the moment, but it helps no one in the long run. Being visible, and being honest about my disabilities, makes it so no one has to feel alone on their bad pain days. It means making a space for the disabled and disabilities in the public view. It means claiming a space for myself even if I don’t wear size four jeans and if I’ll never do more than limp through a 5k hike again.

Today… I took up space. And I’m staying here. Disabled and visible.

 

 

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Disabled People Destroy Science Fiction!!!!

It’s worth the extra exclamation points!

I’ve actually been sitting on this piece of news since early June. Elsa¬†Sjunneson-Henry, one of the editors for Uncanny Magazine’s issue of DISABLED PEOPLE DESTROY SCIENCE FICTION reached out to me and asked if I’d be willing to write something for this, which is an amazing honor. I’ve loved all the DESTROY issues Uncanny Magazine has done and I’m very excited by who is involved in this project already.

To make this a reality we will need your help. Donate to the Kickstarter. Spread the word. Write and submit, especially if you are living with a disability of any kind. Cheer our editors and writers on.

When I was working on this I made the unfortunate mistake of looking up lists of disabled people in fiction. It’s a short list. And it’s a male-heavy list. And it’s a very limited list when it comes to what people choose to write about. Which I found very depressing.

Most the authors were themselves able bodied human beings (not all but most for the lists I found). There were very few #OwnVoices stories about disabilities, and when there were they tended to be either non-fiction (fine) or inspirational (Danger Ahead!). I had trouble finding women, in science fiction especially, who were disabled and stayed disabled.

I have Ehlers-Danlos Syndrome. I was born with it. I will die with it. There is no cure for the crippling genetic mutation that affects 90% of my body. This is a genetic defect found throughout the human race, in every country and genetic group, and it’s unlikely to self-select out of the population. Short of a terrifying eugenics campaign, Ehlers-Danlos is going with humanity to space. A lot of genetic diseases are.

Amputations, hearing loss, blindness, anxiety, depression… we’re probably going to take those to Mars, or the Moon, or Jupiter, or even right out of the solar system if we ever get that far. We need to see that in fiction.

I want to see people struggling with imperfect health in space, because – let’s face it – most of us get sick. The majority of humans are only temporarily abled. Age and accident will eventually changed 90% or more of the population into disabled people. And we need to stop seeing disability as the end.

There are things I can’t do as I get older and Ehlers-Danlos does more damage to my body. There are activities I’ve had to give up. My dreams of being a martial artist are probably shot. I’m not going to get a black belt. My body would take too much damage and I don’t want to go to the hospital. But that doesn’t mean I should dig a grave and jump in.

I’m alive, and while I’m alive I want to see more people like me in fiction. I want to see someone dealing with their advancing disease and not getting a cure, but finding the strength to keep moving on no matter how much their illness slows them down. I hope that’s what you want to see too.

Because, SPOILER ALERT! that’s what I’m writing. Check out the Kickstarter video and all the deets, then get back to me and tell me what disabilities you think we’ll see in space! <3

You can check out the Kickstarter video here. 

DETAILS:

Over the last three years, Lynne M. Thomas & Michael Damian Thomas ran Kickstarters for the Hugo Award-winning Uncanny Magazine Years One, Two, and Three. We promised to bring you stunning cover art, passionate science fiction and fantasy fiction and poetry, gorgeous prose, and provocative nonfiction by writers from every conceivable background. Not to mention a fantastic podcast featuring exclusive content. Through the hard work of our exceptional staff and contributors, Uncanny Magazine delivered on that promise. All that fantastic Uncanny Magazine content is freely available over the web and available as eBooks, thanks to your support. The Space Unicorn Ranger Corps, the Uncanny Magazine community, made it possible for our remarkable staff and contributors to create this wonderful art for all of our readers. THANK YOU, SPACE UNICORNS.

If you’ve been looking for an opportunity to join or re-up with the Space Unicorn Ranger Corps, now’s your chance!

This year, we’re back with a new mission, passed along from Lightspeed Magazine.

It‚Äôs¬†Uncanny‘s turn to¬†Destroy Science Fiction.

Uncanny Magazine proudly presents a special issue: Disabled People Destroy Science Fiction!

Disabled People Destroy Science Fiction will be in the same vein as the previous Destroyspecial issues (Women Destroy Science Fiction, Queers Destroy Science Fiction, and People of Colo(u)r Destroy Science Fiction), featuring editors, writers (both solicited and unsolicited), and artists with representation from all across the sliding scale of disability. There is already a stellar team of guest editors in place for this special issue including:

  • Editor-in-Chief/Fiction Editor: Dominik Parisien
  • Editor-in-Chief/Nonfiction Editor: Elsa Sjunneson-Henry
  • Reprint Editor: Judith Tarr
  • Poetry Editor: S. Qiouyi Lu
  • Personal Essays Editor: Nicolette Barischoff

From Guest Editors-in-Chief Elsa Sjunneson-Henry and Dominik Parisien: 

Disabled People Destroy Science Fiction is a continuation of the Destroy series in which we, disabled members of the science fiction community, will put ourselves where we belong: at the center of the story. Often, disabled people are an afterthought, a punchline, or simply forgotten in the face of new horizons, scientific discovery, or magical invention. We intend to destroy ableism and bring forth voices, narratives, and truths most important to disabled writers, editors, and creators with this special issue.

 

GO SUPPORT THIS AWESOME PROJECT! 

Ehlers-Danlos In Fiction

I never meant to drag my illness into fiction. In fact, it’s been something I’ve intentionally avoided. Ehlers-Danlos is a weird genetic mutation. The things it does would make most editors frustrated.

It turns out: it does frustrate editors. A lot.

Without planning on it I accidentally gave the Lee sisters in BODIES IN MOTION Ehlers-Danlos symptoms. Arnoia’s pregnancy is threatened by a late-stage placental tear, something that ended six of my mother’s pregnancies. My mother miscarried in the later part of the second trimester with each one. With modern medicine I might have had older siblings, but with what was available in the late 70’s and early 80’s there was nothing to be done.

Rowena has the fragile Ehlers-Danlos skin although it’s protected by her augmentation. And that’s what my editor picked up on. She noticed a later chapter of BODIES IN MOTION where Rowena cuts the palm of her hand with her nails. “Not possible,” my editor said.

I looked down at the scratches on my hand, deep grooves left from a midnight mosquito bite and itching in my sleep. Nails can most certainly cut skin! But not all skin. Just skin like mine… papery thin, velvety to the touch, changed because of a mutation in the body’s connective tissue.

Changing Rowena and Aronia would have required very little. I could have given Aronia other pregnancy problems, there are many. I could have had Rowena express her rage another way. But I’m not going to.

I won’t name Ehlers-Danlos in text because BODIES IN MOTION is not an Earth-centric novel. There’s no mention of Earth, or the cultures we know, and I want that separation. I am not dwelling on the disease in the book. No one is getting magically cured. No one is going to be debating the worth of their life because of having Ehlers-Danlos. This isn’t a novel for the inspirations market, it’s unapologetically SF and SFR.

But it will be in the series.

So, if you are an EDS spoonie and want a book with a hero like you (or anti-hero/antagonist/whatever Rowena winds up being), here’s a pair of fighter pilots and warriors with genes like you. Ehlers-Danlos is found the world over in every genetic group. It’s hard to diagnose, autosomal dominant, runs in families, and can be undiagnosed for years if not generations. It’s a disease that will undoubtedly follow humanity where ever we go. Now it gets a face to go with it. I have full faith Rowena will Ehlers-Danlos regret trying to hold her back.

 

Pre-order the print/ebook combo now from Inkprint Press. 
Pre-order the ebook from Inkprint Press | Amazon | Barnes and Noble | Kobo
Add BODIES IN MOTION to your GoodReads shelf. 

Another Fight

Someone asked me today what they should do if life is just too overwhelming. When you hurt, and depressed, and you’ve been kicked down so many times by life that you can’t remember not being in the mud… I’m not sure I have an answer for that.

It’s a good question though. The very same question led me to make a list of medical problems and finally go have a sit down with my new doctor to try to get pro-active with my health. I don’t like asking for help. I especially don’t like going in for medical things because I feel that a normal person has a body that does repairs on its own. You cut yourself, the body heals it up. Boom and done. No extra help needed.

But my health hit a point this summer where it’s frightening me how bad it is. Even with physical therapy my mobility is limited. Even with my iron pills and migraine meds my iron levels are plummeting and my migraines are getting worse. I know the trigger is stress, but I can’t really reduce the stress in my life, because life is stressful. So, I went in, expecting a lecture on healthy eating and a list of exercises to try.

Instead, the doctor peppered me with questions. When was the last MRI on my head? What tests for inflammation had been done? What other drugs had I tried?

The answer was never, none, and none. My previous doctors either weren’t educated well enough to handle my condition, or didn’t care enough to do any more than prescribe a pill. My last doctor had been particularly bad, and it took changing doctors to get a referral to physical therapy.

This doctor stared at me in confusion. Four years of migraines and not a single MRI? He said it’s unheard of.

Here’s the thing… four years ago I started having migraines that incapacitated me for 2-3 days at a time. They left me unable to cook, eat, drive, walk in sunlight, listen to music, or even talk to people because the pain was so bad. And, for four years, I accepted that as my base line for health. Migraines, usually one or two a week, lasting 36-48 hours. That’s on me.

I let my poor health throw me into the mud and I stayed there because it was easier to take the pill and not question WHY? until the migraines started endangering the lives of others (my vision started blurring this summer… not a good thing!).

The good news is… I’m not dead yet. Which means I still have the option to get out of the mud and punch life in the nads.

And that is my answer. If you aren’t dead, you get back up and fight. It doesn’t matter how broken you are. It doesn’t matter how much you hurt. It doesn’t matter that you can’t win. You can make the bastard (in this case Life and Ehlers-Danlos and migraines and bad health in general) pay. You might lose in the end, but you will make it a Pyrrhic Victory. And you’ll do it every time someone takes you down. Because anything else is being dead while your heart is still beating.