Janet Jay

@painchronic_wordsiconic | contributor
After living with chronic pain since my teens, I'm finally in a place where I can write candidly about what that means, the lessons I've learned, and hopefully how others can avoid some of the BS I've had to wade through. Professionally I’ve spent two decades freelancing in journalism, professional writing, photography, marketing and PR (including social media) and have written for Maxim, VICE Motherboard, Popular Science, MAKE Magazine, and many more. I've also have had the pleasure to work with the US Pain Foundation and INvisible Magazine for the past three years. My interests include dogs (especially the two best, my pups Kismet and Arrow), vinyl, live music, video games, a webcomic named Achewood, and geekery of many kinds. I've lived in Austin, TX for the past decade and I love to spin poi, do craft and DIY stuff, and read more than is probably good for me.

6 Questions People With Disabilities Should Ask Before Getting a Dog

For people with disabilities, getting a dog can be a life-changing experience. In addition to company and love, caring for a dog can get you out of your own head and off the couch at times when you wouldn’t or couldn’t otherwise. Owning a dog is a great way to meet new people and a great excuse to get out in the world (we’re talking pets here, not service dogs). But that doesn’t make dog “parenting” easy, cheap, or something you should get into without fully thinking through all aspects of the choice. For disabled people, getting a dog is even more of an undertaking! If you have disabilities, before getting a dog, ask yourself these 6 crucial questions: 1. Can you afford it? (money) Dogs are expensive… and that’s if they’re healthy. (Ask me about my dog Kismet and her two hip surgeries! Food is expensive (ask me about my other dog Arrow and the prescription food she has to eat now because her butt got too chonky!). Toys and grooming and everything else are, you guessed it, expensive. One thing some people leave out is travel: can you afford to board a dog, or take it with you? (Boarding dogs costs more than you think it will!) Are you willing to stay home if things don’t work out?  You should also consider breed restrictions in your area: even if your dog is a mutt, if they’re primarily what’s considered to be a “dangerous” breed, you may pay more in rent or even lose out on housing options. There are definitely ways to get by on less money! This isn’t to say that no person with disabilities can get a dog unless they have thousands to spare. But it really does add up, even spread over a long period of time …Except for when it isn’t. Emergency vet visits will happen. Your dog might need hip surgery, like mine, or get cancer, like my friend’s dog. How much money do you have/are you willing to spend? Realistically, can you swing a surprise thousand-dollar vet bill? People with disabilities should understand more than the average person that getting a dog who’s in good health now doesn’t mean things will stay that way. 2. Can you afford it? (pain/health) I put pain after money because, shitty as it is, the former can influence the latter. The more money you have, the worse your pain can be, because you can buy toys and equipment and afford to pay someone to walk the dogs when you’re hurting too bad. It’s not just money, though: if you have family members or a partner, or even helpful neighbors, they serve the same purpose. They can be sort of a release valve for when things are just too bad for you to take care of anybody but yourself. If it really is just you without support, look in the mirror and really think about whether your disabilities fit with getting a dog. Are you comfortable making a commitment to walk a dog at least every other day for the next ten+ years? Even when you feel awful? Do you have the spoons to devote to taking care of another living creature? Even on bad days? 3. Can you accept that dogs have innate personalities you can’t train out of them? I got both my dogs as puppies and trained them the same way: the older one ended up smart as a whip, devious, a leader, a little bossy. She can even do a bunch of tricks! The younger one is dumb and sweet and wants to be everybody’s friend and is happy to be a follower. She can sit. And sometimes stay.  (There is one trick I’ve been working on for her entire life that she has yet to figure out, and she’s 9 now.) They’re both crate-trained and better behaved than a lot of dogs I know, but no matter what I do or how hard I try to train it out of her, Kismet will bark at someone that comes to the door every damn time. So I ask you: are you ready to deal with behaviors that fall within the normal range of dog behavior, even if those are unwanted behaviors? As a friend who lives in a big city and got a puppy last year said, “Your dog has its own personality and tendencies. Bringing a puppy home doesn’t mean you’ll be able to fully “customize” a dog’s personality. You cannot program the dog. You can be a friend to dog, and caretaker to dog, but the dog is his own being.  And you will never be completely in control of this other sentient being, no matter how good your training is.” Can you handle that? 4. Can a dog fit into your day-to-day routine and living situation? Is there a place in your world for the dog to be? People with disabilities getting a dog should know beforehand what to expect, especially if choosing a puppy or a large breed with a lot of energy – don’t be like the couple I know from high school who got a Great Dane puppy in a two-bedroom apartment – but it’s important for everybody to ask. Do you have kids or roommates? How often do you travel for work? Do you have a yard, or are you OK to stand outside with them multiple times a day while they go to the bathroom? How stable is your housing? What will you do if your housing situation changes unexpectedly? Is there someone who can take care of the dog temporarily if you are hospitalized or too unwell to care for the dog? What if you die? If a future partner is allergic to dogs, or you have a baby, or you move and it’s hard to find an apartment that lets you have a dog, what will you do? Ask yourself, under what circumstances would you relinquish this animal? If you realize that your dog is not thriving in your care, would you be able to shelve your feelings and rehome it? No matter how much you love your dog, if they have needs you can’t meet, can you find it in you to give the dog the life it deserves? 5. Are you getting the right dog for you and your individual needs? Breeds and individuals have such different requirements: there’s a dog to match any lifestyle and activity level, but not all owners consider this. The difference between a puppy of a large, energetic, wilful breed and an older medium-sized dog is absolutely massive. It’s important for people with disabilities getting a dog to be aware of both size and potential behavioral issues. How are you getting your dog? I asked a friend who runs a rescue organization what new owners should ask themselves, and she replied: “Am I obtaining a dog ethically? Does this purchase or adoption align with my values? Am I educated on issues around dog welfare in my community? Is this dog already spayed/neutered, and do I have a plan to do that?” If you’re getting a puppy from a rescue, do you realize and are OK with the fact that you truly have no idea or guarantee what it will grow into? The “breed” on the card is nothing but a well-intentioned guess. On the flip side, purebred dogs are still dogs and can have characteristics you don’t want. They aren’t insurance against the wrong choice. My dogs sure look different now than I thought they would! Have you considered an older dog? Older dogs are actually perfect for people with disabilities! Because they’re: Already house trained Already spayed/neutered, has all their shots Full-grown, so you know what size you’re getting Past the “constant zoomies, mischief and infinite energy” puppy days Puppies are very cute but in addition to everything above, at rescues, they go fast. Expanding your search to older dogs gives you way more options: odds are that an older dog sitting in a shelter near you would be a perfect fit for your life and needs. 6.  Are you dedicated to being a good owner? Do you understand what a dog needs from you? How much do you know about dog training? Are you willing to learn more? How much patience do you have? How much time do you have to devote to training and petting your pup? If you’ve got a puppy, do you realize that it will wake you up at 5 a.m. and chew on the furniture legs and tear around the house full of zoomies and energy for literally years? Everything you do with a puppy has ramifications later on. If you don’t train them well, the next 10 years aren’t going to be much fun for either of you. Speaking of… puppies turn into dogs, and dogs turn into old dogs. Are you ready for that, emotionally and financially? Still in? Hot diggity dog! This story might give you the impression that dog ownership is hard. That’s because it is! But if you know what you’re getting into, a dog can be an incredibly helpful, rewarding aspect of your life in so many ways. Through some really tough and lonely times, mine have kept me company and laughing. And taking care of them sometimes got me moving, even walking, on days when otherwise I would have been on the couch. So ask yourself these questions… and then go check out a local shelter! (If you’re in central Texas, Austin Pets Alive is an amazing group. That’s where I got Kismet!) All photos by Ken from KenWalksDogs (who is great if you are in the Austin area and need a dog-walker!) except puppy pix or where otherwise noted.

How to Use Pain Scales to Explain Pain (Even Though They All Suck)

The fucking pain scale. If you’ve ever sought treatment for pain, you’ve heard this more than once. Ten means the worst pain you’ve ever experienced. Or else ten means the worst pain imaginable. Unless it means “bad enough to go to the ER.” Or just “very severe.”  My new favorite is “Unspeakable / unimaginable. Bedridden and possibly delirious.” That seems closest to the gist of it. There’s even a visual scale for kids with faces! The pain scale and its inescapable fuckery All those things are completely different, of course. I mean… go look at that sentence again and think about how far apart some of those are. I’ve never given birth, had a kidney stone, or had my arm cut off without anesthesia, but I can imagine how badly those would hurt. If I truly went by “the worst pain you’ve ever felt,” my entire scale would have changed after my L5-S1 disc herniated. Does that mean that what was my 7 was now a 5 because the scale was stretched? “There are lots of problems that come with trying to measure pain,” Professor Stephen McMahon of the London Pain Consortium told The Independent in 2018. “I think the obsession with numbers is an oversimplification. Pain is not unidimensional. It doesn’t just come with scale […] it comes with other baggage. How threatening it is, how emotionally disturbing, how it affects your ability to concentrate.” What does “the most pain you’ve ever been in” really mean? I’ve been thinking a lot about this since I saw a post by someone new to chronic pain who said that they couldn’t understand the arbitrary value of a 1-10 scale of pain. She elaborated in a comment: “Especially when they say ‘10 being the most pain you’ve ever been in’ because yes the pain that I’m in all the time is the most pain I’ve ever been in but I always doubt that it’s a 10.” My response was: “Your instincts are right, you should lowball it. Don’t ever say 10, because they will dismiss you. If you’re not literally on your back screaming in pain, or flat-out unconscious, it’s not a 10. I say that not to be mean, but because I have been through this. Your normal everyday ‘worst pain’ is an 8. At MOST. That’s how you get a doctor to take you seriously.” And don’t ever, ever, ever say it’s an 11. Unless you’re Spinal Tap. Turns Out Doctors Care About the Pain Scale Numbers, Not the Words Here’s what drives me up a wall: the doctors who make us do this don’t know or care about the technicalities. A 10 is a 10 is a 10, I’ve discovered, no matter what the “definition” happens to be. Unfortunately, as someone who lives by words and who is very literal-minded in some ways, that realization took me faaaaaar too long. The Pain Scale: Choosing the Best Version for You (Sorry, They All Suck) Some people like to write their own pain scales, and there are a whole bunch of other all-slightly-different scales that do one thing or another.  For instance, with the McGill Pain Index, created in 1975, doctors ask patients to select from among a list of sensory, affective, and evaluative descriptors for their pain, and assign a number describing their intensity. I’ve filled out this form so many damn times, even in my own medical journey over the last 20+ years (good lord, it’s really been that long, hasn’t it).  But it’s still a subjective measurement that’s treated as objective and forced onto a numerical scale that truly doesn’t describe the situation. Things I Wish I’d Known About the Pain Scale I wish someone had told me at the start that my affect was being judged and noted every time I came in (“affect” in this case means the visible reaction a person displays toward events, often described by such terms as constricted, normal range, appropriate to context, flat, or shallow). I wish I’d known that the numbers on the scale matter more than the definitions that go along with them: even if a poorly-worded definition traps you at a 6, if your pain feels more like 7 out of 10, you should go with 7. Describe Your Pain (Seriously, Actually Describe It) But honestly, it’s better to just get done with the number and move on to the actual description. And that’s the right word, too: don’t just say your pain is bad. Describe how it’s bad. Describe the effect it has on your day-to-day activities. Describe the actual pain as best you can: not just “it hurts” but “it burns, it stabs, it clenches.” My chronic pain started when I was 15. I wish, at the start, that I had the words to describe just how different my pain was at night than it was at 10 a.m. when I might have a doctor’s appointment. My affect at 10 a.m. and my affect at 10 p.m. are, well, like night and day. But just saying “it gets worse as the day goes on” doesn’t really communicate that. Turns out most pain gets worse as the day goes on, but not to the extent mine did, and it took time to figure out how to get that across. Pain Scales: An Imperfect, Objective Measurement of a Variable, Subjective Experience And that’s the crux of it: all these things are trying to objectively classify something that resists that categorization. There are so many types of pain, but even if you only have one (“only”), pain isn’t neat and tidy. So as you answer pain scale questions, keep the bigger picture in mind. Stress out less about the technical wording of the scale you’re using and more about how you’re going to get across the information you need to get across. Think of the pain scale as an intro to a conversation that might really be useful to both you and your doctor, rather than as the be-all-end-all. Or just scream “BEES!!!” and hope they get the joke.

How Selma Blair and Her Cool Canes Support Disability Acceptance

Let’s talk about representation, something that has always seemed like it… wasn’t for me. I’m a white, upper-middle-class kid from the suburbs, and none of my issues are immediately visible. I have an assortment of mental health problems and ADHD and you can’t see that either (well, except for all the fidgeting and doodling). My physical disabilities — fibromyalgia, migraines, a f***ed up spine, a sprinkling of CPRS — are usually invisible, except when the pain forces me to use a cane or a wheelchair. While I celebrate the idea of people wanting to see themselves represented in the world around them, to be able to get Share-a-Smile Becky’s wheelchair inside the damn Barbie Dream House, it’s just never felt like it applied to me. Representation for my invisible pain would be, um, an action figure lying in the corner of a music venue, using her purse for a pillow, trying to last to the end of a set. That’s not a fun playscape. Not a lot of smiles to share there. I don’t keep up with fashion and celeb culture and red carpet anything. I don’t have cable television and I can’t even tell you the last award show or red carpet I watched. It’s just not a part of my life. But when I saw a picture of Selma Blair on the red carpet of a 2019 Oscars party wearing this absolutely stunning, silky, floaty, flowy gown and a badass cane, it absolutely blew me away. Blair posted, “When my life flashes before my eyes, I want this portrait by @markseliger to be front and center.” Staying Sexy: Cool Cane Edition   View this post on Instagram  A post shared by Selma Blair (@selmablair) Selma Blair stands in 3/4 profile wearing a black one-piece bathing suit and holding a black cane with a tan handle The cane didn’t distract from the outfit — the cane made the outfit. She rocked it head to toe — and as somebody who really struggles with staying sexy and staying myself past whatever mobility aids I may have, it was so inspirational. In my experience, mobility aids desexualize you. I can walk around as a moderately attractive person and see people check me out or flirt with me… but put that butt in a wheelchair and any potential interest just evaporates. Which is one reason I’m truly thrilled to see her embracing the cane as an accessory that can be sexy. (Or not, as you choose, just like everything else.) As Blair said, canes should “fit right and look cool… It can still be chic. You shouldn’t have to sacrifice style.”   View this post on Instagram  A post shared by Selma Blair (@selmablair) Selma Blair wearing a black leather jacket, short black dress, and elegant cane. Getting Personalized Support Blair ended up walking the red carpet at the 2019 Oscars with a badass patent leather cane, monogrammed and featuring a pink diamond. “I have met so many people on Instagram who have said that they were always ashamed of their cane,” said Blair. “You want to still be part of the living, not a shuffling person people get out of the way for because they’re queasy. A cane, I think, can be a great fashion accessory.” There are a ton of cool canes on the market, but there’s a lot of ugly, cheap crap too. It takes people like Blair being loud and proud about their use of and need for awesome canes to help convince businesses that there’s a market for them. Not all of us have designer friends who will monogram our canes for us! But we still want to look awesome going out on the town. Limping Towards Acceptance So thanks, Selma, and keep on kicking ass. We need more examples of head-to-toe outfits where a cane is a plus rather than a minus. She didn’t plan to be here, like all of us, but she has tackled her challenges with grace and drive. By being open about her diagnosis and struggle, she has done an incredible service to those of us with invisible disabilities. Sometimes the best support is seeing the details of someone else’s fight. Cane or not, we all need someone to lean on. Blair’s story may help prop you up during a bad time! I’ll stop using cane puns, but in all seriousness: Blair’s story is deeply inspiring, and I am truly grateful that she has chosen to publicly share such a personal journey. I’ll close with a quote that I find really inspiring: In researching this post, I discovered that Blair has filmed a documentary about her struggles, titled “Introducing Selma Blair.” I can’t wait to see it! Here’s more info about it; Blair also recently posted on Instagram to introduce the project.