Tag Archives: disability

Get Out of Your Mind

Last week I talked about The Secret Garden and how Colin’s entire disability was a product of misconception and rumor. However, my mind didn’t stop there. I was struck by how many of Colin’s problems could have been and/or were fixed by just giving him something to think about besides everything that could go wrong in his life.

One of the most common reactions to disability in life, as well as other media, is the thought “my life is over”, or “they’ll never do anything for themselves again”. Even if the reaction isn’t as strong as that, it’s an insidious little thought that can find its way into the most rugged of souls. “Why do I push myself so hard?” “Is it really worth all this pain?” Sometimes we do need to step back and re-evaluate where we’re putting all our energy. But I also think it’s really important not to let pain, fatigue, fear, and complacency take away our passion or drive us into damaging introspection.

Self-awareness is usually a pretty good thing, but I know for me personally, I have a tendency to think too much, to worry and second guess, to live in my own head. That’s where the depression starts; it’s where I lose my passion and the will to push through – in my head. Sometimes the answer is just finding something that distracts me from worry and second guessing. The less I think about it, the smaller it gets until suddenly the problem is bite-sized; not this looming, all-powerful thought chasing me around the inside of my skull.

If we let the fear and complacency win, we all become Colin, lying in bed waiting for the end so we can finally escape the misery and boredom. That’s where we need a challenge, something to inspire us and work towards. Without it our own thoughts get the better of us. Without it we become more disabled.

And our challenges don’t have to be earth shattering. Colin lacked even the motivation to get out of bed in the morning because everyone told him he couldn’t. Standing up can be a challenge. Taking a step. Just sitting up and thinking about something other than pain and fatigue instead of rolling over, back into that familiar, wasting mindset.

Find a hobby. Find a friend. Find a goal that takes you out of yourself and away from your fears and your doubts. Strength is elusive if you’re not searching for it.

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Redemption and Domestic Chores

The Secret GardenMary Lennox is a lonely girl who only becomes more lonely when her parents die of cholera and she’s sent to live in her uncle’s huge, foreboding manor. But it is there that she meets her cousin, Colin, a boy just as lonely and neglected as she. He has lived his whole life in bed, believing he is going to die. Together the two embark on a mission to find a secret garden, and in the process, find the love and care they’ve been missing their whole lives.

My mom read this to me when I was a kid. At that point, I loved secrets and the idea that two ten year olds could coax a garden to life with no adult supervision was a thrilling one. I also really liked Mandy by Julie Andrews Edwards, a book about an orphan who finds an abandoned cottage and makes it her own. I guess I had a fascination for independence… and domestic chores. Not sure what that says about me. But now I’m grown up and certain things have happened to me, and when I picked this book up to read it again, I was drawn to the memory of Colin. I wanted to see what Frances Hodgson Burnett had to say about living with a disability (especially in 1911). Funny thing though, about three quarters of the way through I finally realized it’s not about living with a disability at all. It’s about the perception of disability and the perils of living too much in your own head with nothing but fear for company. It’s about the transformative powers of challenge and determination. It’s about redemption.

Colin’s illness is a direct result of the fears and misconceptions surrounding disability and infirmity in the world as a whole and Mistlethwaite Manor in particular. There’s nothing physically wrong with him. But his father is a hunchback (really just some severe scoliosis), and from his birth everyone around Colin assumed that he would be the same. The assumptions grew and multiplied until it was whispered that his back was weak, his legs were crooked, he was half-witted, and it was only a matter of time until he died. Even if all that were true, his ears worked just fine, so is it any wonder he believed all the horrible whispers, especially since no one ever bothered to say anything nice or positive to counteract them?

That is, until Mary shows up. I love the symmetry of Mary and Colin. It takes a sour, miserable little girl to shake a sour, miserable little boy out of the prison of his thoughts. It’s through Mary that we can see under the tantrums and the imperious demands to find and comfort the terrified boy underneath. Colin doesn’t want to die. He doesn’t want to wake up one day and find that his back has started to twist. But no one has ever bothered to give him something else to think about and hope for. Mary cuts though his despair with her own kind of harsh wisdom, giving him such simple childhood gifts like laughter and a belief in magic.

Normally, I’m not a fan of stories where a disabled character is healed (whether miraculously, magically, or through their own hard work), but since Colin’s disability was a product of fear and his unwillingness to test his own strength, his recovery was about something more than just slapping a pair of legs on a crippled boy as a reward. Colin’s healing was his redemption. He grew from a miserable, nasty child into a strong healthy boy determined to leave his “queerness” behind. He triumphed over his own mind, his fears, and his beliefs.

Colin’s recovery fit. But what bothered me at the end of the book was that his father’s return and their joyous reunion seemed to reinforce Colin’s belief that if only he were strong, if only he were well, then his father would love him. Archibald Craven’s feelings regarding his son aren’t very well defined. He wonders what he should feel when he visits the sleeping boy. And he only returns because of a vague feeling of happiness and the nagging of a local mother. In the Broadway version, it’s much clearer that Archie loves his son and only stays away because he’s been led to believe his presence would disturb Colin and make him more ill. Their reunion in the garden is bittersweet as they forgive past neglect and move into the future with hope and promise. However, I was very dissatisfied with the ending of the book. I wanted Archibald to be redeemed and Burnett obviously wanted us to believe he was but it just didn’t ring true to me. Too little, too late, Archie.

And not only does Archibald Craven’s love and care for his son seem to hinge on Colin’s new strength and ability, but also, Mary disappears. In remembering his son, Archibald is still forgetting the other young life dependent on him. Though given Mary’s independence and the lessons she’s learned, I think she’ll probably do just fine, even if her uncle can’t get his act together.

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Consider Yourself At Home

I’ve mentioned PHAMALY before, but this came up in my inbox and I had to share. I find these men and women so encouraging. I watch them perform and think, “what amazing things could I do?” But I hadn’t considered it from the actors’ perspective before. Some of them were pursuing careers in acting before they became disabled. Now they encounter prejudice and discrimination based not on their acting ability, but just on how they would look in a part.

I was not particularly athletic before my injury. As a student, a writer, and a gamer I didn’t feel like I’d really lost the ability to do something I loved. But three years after my injury I started Physical Therapy school. Here was a career I was passionate about, and one I’d be really good at. Two semesters in I was asked to withdraw because the school would not modify the program to accommodate my disability. I don’t believe it was the right choice but I understand that they felt like it was. This isn’t meant to bash my school or the professors and colleagues I respect. I’m just saying that I know what it’s like to be barred from something so important.

I love that PHAMALY provides a place for these actors to feel safe and strong. They don’t have to hide their struggles, and when they’re performing you look past their disabilities to see what’s really important: their passion and their talent. And PHAMALY is doing more than just providing a home for disabled actors. It is changing the way we view, understand, and treat those who are different. As an organization, PHAMALY is as much an inspiration as the men and women who are up on the stage.

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Living, Not Waiting

I recently finished the book Where Is God When It Hurts? by Philip Yancey. I tried to read this back in college just after my injury, but pesky things like school and life got in the way and I had to put it down before finding the answers I was looking for. Funny that I decided to pick it up again now after I’ve found those answers for myself. I didn’t need Yancey’s words to guide me through my pain, but I did notice that a lot of my struggles and growth were reflected in the pages.

Yancey talked to two people with quadriplegia. Brian Sternberg and Joni Eareckson Tada. About Brian he said: “Although he recognizes that God has providentially used his pain to bring good, he rejects the notion that God might allow such a condition to continue for the rest of his life. He has gambled his faith, and almost his theology, on the hope for healing.”

I have to admit, I found Brian’s story rather bleak, whereas, Joni’s words might as well have been my own. Yancey says, “She had to accept herself as a quadriplegic and search for new ways of coping. The process was painful. When her boyfriend would put his arm around her and squeeze, she felt nothing. At these times and others she kept fighting a temptation to close her eyes and fantasize, imagining what it would be like if she were well again. A fiancé, a sports car, long hikes in the woods, a place on a college lacrosse team – the possibilities were endless. But they were also worthless, and Joni realized that dwelling on them did not relieve her suffering and only delayed the process of self-acceptance.”

I believe in miracles. Whether that’s experimental therapy or something more along the lines of Jesus heals the paralytic. But I know that if I put all my hope and faith, time and energy into waiting for my miracle, I’ll miss something more important. My life.

I know God will heal me in His own time. He’s got it covered, which means I can put that particular worry in a box and pack it away in the crawl space next to the knick knacks I no longer want but can’t quite bring myself to throw away.

Joni felt the same. “I now realize that I will be healed,” she said. “I haven’t been cheated out of being a complete person – I’m just going through a forty- or fifty-year delay, and God stays with me even through that. I now know the meaning of being “glorified.” It’s the time, after my death here, when I’ll be on my feet dancing.”

I’m content. I’m happy. Which means that when my personal miracle shows up I’ll be pleasantly surprised, instead of looking at my watch and saying, “You’re seventy years late”.

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Resistance is Futile

When technology and humanity collide, one woman’s life is changed forever…

Woman Gains Full Mind Control of Robotic Arm

How amazing is it that this quadriplegic can pick up a pencil again. Or brush her hair. Or pet her dog. Or do any of the millions of things that we take for granted every day. I’m constantly floored by the incredible leaps and bounds being made in fields like physical therapy and bioengineering.

I can’t help but think what the implications could be for me. I mean, I can walk just fine, and I only use the char when I’m tired or I’ve got a pressure sore. But the implications… I’m imagining a chair with legs. Wheels are great but they can’t climb stairs, hills and curbs are a pain, and grass and underbrush are nearly impossible. With my striding chair I’d be able to hike through the wilderness, climb to the top of a lighthouse, and navigate the rubble at the end of the world (by the way, I’m still here, how about y’all?).

Also, the article mentioned how her reaction speed and strength were equal to normal reflexes, but one of the common thoughts for robotic prostheses is that one day they’ll be better than what the rest of us have. Better, stronger, faster…and all that. So how long will it be before people are voluntarily chopping off limbs to replace them with shiny titanium or carbon fiber bits and bobs? The article mentioned Luke Skywalker but what about the Borg? We’re no longer limited to what we can just strap on our bodies. These prostheses are actually integrated into human flesh, using the framework and electrical signals our bodies provide. Why would I need a striding chair when I could replace my faulty legs with awesome walking machines?

Don’t worry, I’m not ready to lop off bits of me yet. But I will definitely be interested to see what the future holds.

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A New Kind of Romeo

A few weeks ago I caught this stand-up routine on Conan O’Brien. Samuel Comroe is a brilliant comedian and actor with Tourette’s Syndrome (I freely admit, I had to look up how to spell it). I thought his act was amazing and wonderfully done.

I’ve always been drawn to comedians with self-deprecating humor, but I think there’s something particularly courageous about not only using your disability as comedic material but standing up in front of complete strangers and drawing attention to your differences. Too often we’re ashamed by our differences; we either try to cover them up or ignore them. Comroe actually highlights them and makes us laugh along with him.

As y’all know, I’m all about finding humor in crappy circumstances, so it’s no wonder this guy caught my eye. But what made me sit up and watch was that Comroe isn’t just laughing off his struggles the way you laugh off the twisted ankle you got tripping over the dog on your way to the bathroom in the middle of the night. He uses his disability to his advantage. Check out how he works with the ticks and pauses to effect his own comedic timing. The Tourette’s becomes a part of his style of humor.

So all in all I was really impressed with this guy. And impressed with Ricky Gervais and Conan O’ Brien for recognizing his talent and giving him an opportunity to showcase it. I’ll definitely be looking forward to more of Samuel Comroe.

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A Step Back to Roll Forward

Our new houseOver the last few months I’ve felt myself slowing down. I’m only 27, but ADLs (activities of daily living) seem to take a lot more work, chores are anticipated with a physical kind of dread, and at the end of the day, I’m exhausted after doing nothing more than living. After six years, I think my body is finally tired of yelling at me and has decided to strike until I agree to more reasonable working conditions.

I’m not a weakling, but I’m also not a hoss. No extreme sports for this bookworm, please. But when a spinal cord injury laid me out three months before my wedding, I worked my butt off in order to walk down the aisle. And after that, I just sort of kept going on the same way. I stuck my chair in the basement, determined never to pull it out again. That lasted for a couple years until I got pressure sores on my feet. The only way to get rid of a pressure sore is to stay off of it and give it time to heal. Well, it’s pretty hard to walk and stay off your feet at the same time, so I caved and brought out the chair.

It felt like a cop out. I mean, I’d spent all this time and energy getting out of the chair and there I was plopping back down at the first little setback. This was totally not true – just another lie I believed. I really did need to get off my feet to heal, but it felt like a step back. What I didn’t tell anyone was that under the frustration and depression was a profound relief. Suddenly my feet didn’t hurt, my knees didn’t crackle and my back didn’t ache.

So I started to use my chair for getting around large places like airports and zoos. But it still went in the basement when we got home. After all, I only needed it for long walks, right? There’s nothing shameful about that. Except there shouldn’t be anything shameful about using my chair at all. Looking at it now, I can’t figure out what I was fighting against. Was I trying to prove something? I think I was trying to show myself that I wasn’t less than I had been. And now that I’ve done that maybe I can focus on what’s best for me.

The chair makes my life easier. Why would I balk at using just another kind of tool? I buy Pampered Chef stuff all the time because it makes my life easier. I don’t say “well, I’m not going to use a knife to cut my vegetables because I want to prove I can do it without”. And then what? I gnaw an onion into submission? See how silly that is? Now that we have a new house with wide doorways and wood floors, I can get around without a moment’s hesitation. I don’t have to struggle up a flight of stairs to get to my books (halleluliah!). And guess what? I have a lot more energy throughout the day. I can get chores done and still have the umph to sit down and write. I’m not giving anything up. In fact, I’m gaining something. It’s called freedom.

It’s taken me six years to admit it, but I don’t want to walk everywhere. I get around my house with a weird mix of walking, rolling, and crawling. I know it looks odd but it works for me. Y’all are probably thinking “Why was this so hard to admit?” Well, I’m pretty stubborn by nature and sometimes you have to beat me over the head with an idea a couple times before I’ll even consider it. This was one of those times. And I find clarity when I write my thought process down, so you get to experience the inner workings of my mind. Lucky you. But in writing this post I realized I’m not trying to justify my choice to you. I’m trying to convince the girl I used to be that it’s all going to be okay. That poor young woman who ached to be up and walking for no other reason than to say she could. This is for her.

 

I promised y’all an update on the new project I’m working on, but after starting it I realized it’s going to take a lot more work than I originally thought. Research! And interviews! So I’m postponing the announcement until I’ve got a better grasp on my timeline. I know, you’re sooo disappointed, but I’ll have to make it up to you later.

 

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My Kind of Smart

Hazel, the protagonist of John Green’s The Fault in Our Stars, has been living with cancer for years. She goes through life knowing that death is just around the corner, stalking her patiently.

I know I usually write about disabilities, but if dying of cancer isn’t a disability, I don’t know what is. Now, I wouldn’t have said my difficulties are anything like those of someone diagnosed with cancer – I’m not dying of anything; aside from the bum legs, I’m pretty healthy – but I found a lot in this book and in Hazel as a character to relate to. Much of the story was wrapped around Hazel’s favorite novel, and she talks about how she feels like the author knew exactly what she was feeling, sometimes even before she could find the words to express it. In many ways, that was how I felt about The Fault in Our Stars.

I watch John and Hank Green’s videos on youtube and, holy crap, are they awesome. So, I have to admit, I was worried this book would be too smart for me, like the classics everyone else thinks are amazing while I’m sitting alone in the corner wondering what I’m missing (To Kill a Mockingbird and Catcher in the Rye, I’m talking about you. Don’t worry, Dracula and Dr. Jekyll and Mr. Hyde, you’re fine). But Green’s book ended up being my kind of smart. It was about making the best out of crappy circumstances. It was about finding humor where you could, and it was about living with pain. If you’ve read some of my other posts on living with a disability then you know my philosophy. You know how I try to find things to laugh at, things to take pride in, despite the pain. And Green seems to have hit that nail on it’s admittedly narrow head.

And there were plenty of other details that I saw as reflections of my own life. At the Anne Frank house in Amsterdam, Hazel worries about holding up all the other tourists while she hauls her oxygen tank up the stairs. If I had a nickel for every time I’ve worried about the line forming behind me on stairs, my library would be a lot bigger.

She hates the empty words of encouragement everyone gives her, but when faced with someone else’s pain, those same substance-less phrases find their way in her mouth. You’d think it would be easy, but it’s horrible how hard it is to share comfort for your own kind of pain.

And Hazel knows what it’s like to be asked “are you okay?” when you’re obviously not. You say “I’m fine”, because it’s simpler than “well, I’m dying of cancer, but besides that, everything’s hunky-dory” or “well, I’m supposed to be getting married in three months and suddenly I can’t walk down the aisle, but thanks for asking.” I’ve come far enough that now, when I answer “I’m fine”, I almost always mean it. But there was a time when that question stabbed me like a bread knife (huge and serrated) and all I could do was smile through the pain and hide the blood. And just like Hazel and her idolized author, Green has captured that exact feeling of maintaining two faces, one for yourself and one for the world.

I could keep going in the same vein, but the entire point of this blog is not to bore you, so I’ll quit while I’m ahead. So after all that, I would like to say this was not on my favorites list – yes, it’s a list, there are too many good books to pick just one favorite. I thought the dialogue was unreal, and not in a “hey man, that concert was totally unreal” kind of way. The main characters were way too grandiloquent and verbose. Existentially fraught basketball shots? Seriously, who talks like that? No one. Especially not teenagers. And let’s not forget the protagonist is a dying teenager. A bit too depressing for me. A Nickolas Sparks fan I am not. However, I’m not going to deny that the book affected me. Deeply. (Deny? Good grief, who am I kidding. I just wrote an entire post on it.) My imaginary hat is off to John Green for the amazing and almost creepy, stalkerish way he’s put my feelings on paper. So long as his other protagonists don’t sound like pretentious Harvard professors, I’ll definitely be checking out some of his other works.

So, random question: how many books do y’all think are on my favorites list? The person who guesses closest gets a prize: their choice of an excerpt from Cinderella, Robin Hood, or the brand new (translation: unedited) Beauty and the Beast. And for the cheaters out there, the list on my goodreads isn’t complete, so tough luck.

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Blind But Unbroken

The Broken Kingdoms is the second in N.K. Jemisin’s The Inheritance Trilogy. I found the first one, The Hundred Thousand Kingdoms, well-written and intriguing, so I went ahead and picked up the sequel, and lo and behold, I found another disabled character to talk about. I’ve got a whole list of books to read because someone somewhere has said they have something to do with disabilities, but I really love discovering them on my own. It’s like turning over rocks to find bugs, only a lot less squirmy and squishy.

Oree Shoth, the protagonist, has been blind since birth. She can “see” magic, but that doesn’t really help her on a day-to-day basis. To me, it didn’t feel like Jemisin had an agenda for writing a character who’s blind. The disability was just a part of the whole, something that added another dimension to who Oree was. I really admire an author who can take an impairment that affects all aspects of life and treat it as just another character trait. It makes disabilities feel a lot more normal – see, I’m really not all that different from everyone else – and it helps everyone else see disabilities in a different, more intimate way.

Now, I’m not blind, so I don’t have any experience to compare Oree with, but from my limited perspective, the details Jemisin provided seemed pretty consistent and thought-provoking. Oree always recognized people by scent or sound rather than physical characteristics she couldn’t see. She could tell plants and pigments apart just by touch or smell. And Jemisin did something really cool to highlight Oree’s different perspective. There were moments in the book where there was so much magic around her that Oree could actually see, and she marvels at the experience. Things that never would have crossed my mind became the defining details of her narrative. She wonders at things like depth perception, the way her eyes try to focus, and how her hands look. She did do the stereotypical face feeling, and I’ve heard several people who are blind scoff at this, saying, “No, I don’t want to feel your face. Do you want to feel mine?” Oree does it more to tell what emotions people are feeling, but I still wasn’t buying it.

Oree really values her freedom and independence. She uses tools and has a routine that allows her to live and work independently. She fights for her freedom and chafes when it’s taken away. However, she recognizes that it’s okay to need help occasionally. I loved watching as Oree struggled to teach this balance to another character. Maybe because I was almost as stubborn as he was about accepting this simple life lesson. No one can do everything, except maybe Superman, and who wants to be him? Have you ever tried changing in a phone booth? Though I’ll admit the flying thing is certainly tempting. Whatever, my point is that I can ask for help without sacrificing anything of myself or my pride.

And Oree had a really subtle strength. There were plenty of moments where she seemed weak, where she accepts all she can do is run away, but when it finally came down to the line there was no one else to pick up the slack, she stepped up and saved the day. There’s something about that kind of hero that appeals to everyone, I think. Not all of us are capable of being the big, blond guy with the stainless armor and sword, and the smile that goes ting. Some of us are more like Oree, bruised and bowed, but unbroken, with a subtle heroism if you’re willing to look beneath the surface.

Yeine and Oree’s stories might be done, but the trilogy concludes with The Kingdom of Gods.

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Wheelchair Waltzing

Phantom Waltz by Catherine Anderson

After losing the ability to walk in a barrel racing accident, Bethany Coulter considers herself lucky just to be able to function as independently as she does. She has reconciled herself to never being able to ride or dance or date ever again. But when she meets Ryan Kendrick Bethany begins to hope that she can find love and happiness despite her disability.

 

I’ll start by saying that I’ve found I’m more critical of books that feature disabilities similar to mine. I want them to be good. I’m invested in their success. So I expect more of them, like a teacher with their star pupil. Or like Scrooge standing over Bob Cratchit’s desk with unreasonable expectations. I haven’t decided which yet. That’s why I was so excited to start this book. A heroine in a wheelchair? So up my alley that it’s parked in my driveway and knocking on my door. Except… it wasn’t. I think somehow it got the house next door.

Bethany Coulter has an incomplete spinal cord injury at L2. For those who Spinal Columnaren’t anatomy nerds, that means her spinal cord was damaged at the second lumbar vertebrae, the lowest portion of the spine. If the reference means anything, mine was at T9 (T for thoracic, the middle portion of the spine). One thing Anderson did right was provide a lot of specific details. What bothered me was that most of them seemed wrong for Bethany’s injury level and the functionality she should have had. In my experience, L2 is a very low injury. In fact, they don’t get much lower than that, which means she should have normal upper body strength and pretty good core balance. So why is she in a power chair? What was her occupational therapist thinking? Power chairs are great for those without the strength and balance to push a manual wheelchair, but they’re huge and heavy and have to be recharged every night. It didn’t make sense that Bethany used a power chair when a manual one would have served just fine. Unfortunately, this incongruity was present all through the book. Bethany was very clear about how she needed a dressing sling in order to get dressed, and what I can only describe as scaffolding, in order to go to the bathroom.

Now, I know that every injury is different, especially incomplete ones, and my experience is not the be all end all of SCIs. But from the information given, Bethany and I should have been very similar. I know I’ve never used a dressing sling (never even heard of one), and I don’t even need to use the bars in the handicapped stalls to go to the bathroom. At most, I sometimes used a sliding board for particularly tricky transfers, but I eventually gave it away because I stopped needing it. I’d love to read about heroines with such low functionality, but if Anderson really wanted her protagonist to actually need all the equipment she uses, she should have made Bethany a quadriplegic, or at least have a much higher level injury. It would not have changed the story any, and the details would have been correct.

Aside from all that, I had a hard time liking Bethany as a character. She was always telling people about how she wanted to be independent, but she acted so helpless when she was in trouble that I had a hard time believing it. And she was always explaining how hard things were, or how she couldn’t do something specific instead of trying to work around her limitations. She did manage some heroics (yay for crawling to save your man while a bear’s on the loose!) but in the end it just didn’t make up for her overall wimpiness. Maybe it was just that her philosophy was so different from mine. All I know is that I kept wanting to yell at her, “Go for it! You deserve better! Why can’t you be with him? He built you a ramp for pity’s sake. What better expression of love and commitment does a girl need besides a ramp?” But as usual, my cries went unheeded.

At the last, Bethany did learn that it’s better to live your life to the full, accepting the risk that you might get hurt, than to live safe but unhappy in a box of your own making. As far as themes go, this is one I can definitely get behind. I want disabled characters to figure out how to continue doing the things they love instead of sitting around whining because that’s what I want for myself. I wasn’t an athletic person before my injury so I’m not missing a lot, but I can guarantee that one of these days I’ll figure out adaptive sailing because I really want to sail again. Though it might have to wait until we live near some water. It’s hard to sail in a desert.

Although I agree with this theme, I want to point out that I think finding a balance is equally important. I can fight to find ways to do the things I love while accepting there are other things that I will never do again. I’m perfectly capable of taking short hikes around the Rockies (so long as I’m okay with being in some pain afterward), but I will probably never climb a fourteener. I’m sure there are other people with disabilities out there who have, but to me, it’s not so important. So I’m going to accept it and move on to the things that are.

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