Spinal Cord Injury

Join the Conversation on
Spinal Cord Injury
2.5K people
0 stories
194 posts
About Spinal Cord Injury
Explore Our Newsletters
What's New in Spinal Cord Injury
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Making A Statement

Hi everyone, I wanted to share an important press conference I was so grateful to be apart of. It was regarding my personal heath journey, and speaking out about the difficulties with health insurance. I wanted to speak out publicly for everyone who’s enduring this battle and to know you are not alone! Please watch www.facebook.com/share/v/p5zkjhmpFx9ASJi5
#Grief #Depression #BrainInjury #SpinalCordInjury #AlopeciaAreata #Anxiety #MentalHealth #Addiction #ChronicIllness #JointHypermobilitySyndrome #ChronicFatigue #Loneliness #MightyTogether

(edited)
2 reactions 2 comments
Post

Books Featuring Thespians With Health Challenges

A lot of people use performing arts, such as theatre, as an outlet. It turns out that a lot of fictional characters do, too! Here is a list of books featuring thespians with health challenges:

1. “The Chance To Fly” by Ali Stroker
Thirteen-year-old Nat Beacon loves a lot of things: her dog Warbucks, her best friend Chloe, and competing on her wheelchair racing team, the Zoomers, to name a few. But there’s one thing she’s absolutely OBSESSED with: MUSICALS! From Hamilton to Les Mis, there’s not a cast album she hasn’t memorized and belted along to. She’s never actually been in a musical though, or even seen an actor who uses a wheelchair for mobility on stage. Would someone like Nat ever get cast? But when Nat’s family moves from California to New Jersey, Nat stumbles upon auditions for a kids’ production of Wicked, one of her favorite musicals ever! And she gets into the ensemble! The other cast members are super cool and inclusive (well, most of them)—especially Malik, the male lead and cutest boy Nat’s ever seen. But when things go awry a week before opening night, will Nat be able to cast her fears and insecurities aside and “Defy Gravity” in every sense of the song title?

2. “Cut Loose” by Ali Stroker
The showstopping sequel to “The Chance to Fly”, “Cut Loose!” by Tony Award–winner Ali Stroker and Stacy Davidowitz is an uplifting story about embracing your strengths, standing out, and standing up for what you believe in. It’s the beginning of eighth grade, and Nat Beacon is nervous. Not only will she be the New Kid, but the New Kid in a Wheelchair. And the school year starts off No one seems friendly, and she can’t get to the cafeteria without help. But there are a few bright spots. Namely, her best friend, Hudson; her boyfriend (swoon!), Malik; and her very favorite theater. This year, there’s a middle school theater competition, and any production that wins their regional competition will get the chance to perform—on a real Broadway stage! Nat couldn’t be more excited. This is her chance to make it big and prove she belongs at her new school! She wows the director and gets cast in the school Footloose! But rehearsals are super stressful. Dance diva Skye wants more complex choreography, Malik keeps flaking for band practice, and Hudson gives Nat the cold shoulder, leaving Nat confused and alone. Nat starts to wonder whether she can really carry the show to Broadway and whether, without her friends, it’s worth doing theater at all.

3. “Fade To Us” by Julia Day
Fade To Us is a story about found families, the bond of sisterhood, and the agony and awe of first love. Brooke’s summer is going to be EPIC—having fun with her friends and a job that lets her buy a car. Then her new stepfather announces his daughter is moving in. Brooke has always longed for a sibling, so she’s excited about spending more time with her stepsister. But she worries, too. Natalie has Asperger’s—and Brooke’s not sure how to be the big sister that Natalie needs. After Natalie joins a musical theater program, Brooke sacrifices her job to volunteer for the backstage crew. She’s mostly there for Natalie, but Brooke soon discovers how much she enjoys being part of the show. Especially sweet is the chance to work closely with charming and fascinating Micah—the production’s stage manager. If only he wasn’t Natalie’s mentor… When summer comes to an end, will Brooke finally have the family she so desperately wants—and the love she’s only dreamed about?

4. “Short” by Holly Goldberg Sloan
Julia is very short for her age, but by the end of the summer run of The Wizard of Oz, she'll realize how big she is inside, where it counts. She hasn't ever thought of herself as a performer, but when the wonderful director of Oz casts her as a Munchkin, she begins to see herself in a new way. As Julia becomes friendly with the poised and wise Olive—one of the adults with dwarfism who've joined the production's motley crew of Munchkins—and with her deeply artistic neighbor, Mrs. Chang, Julia's own sense of self as an artist grows. Soon, she doesn't want to fade into the background and it's a good thing, because her director has more big plans for Julia!

5. “Say It Out Loud” by Allison Varnes
Charlotte Andrews is perfectly fine being quiet—in fact, she prefers it. When she doesn’t speak, people can’t make fun of her stutter. But when she witnesses bullying on the school bus and doesn’t say anything, her silence comes between her and her best friend. As if that wasn’t bad enough, her parents signed her up for musical theater. Charlotte doesn’t want to speak onstage, but at least she doesn’t stutter when she sings. Then, just as she starts to find her voice, the arts program is cut. Charlotte can’t stay silent anymore. So she begins to write. Anonymous encouraging notes to her classmates. Letters to the school board to save the school musical. And an essay about the end of her best friendship—and her hope that she can still save it. Words could save Charlotte Andrews and everything she believes in… if she just believes in herself enough to speak up.

6. “Scars Like Wings” by Erin Stewart
Ava Lee has lost everything there is to lose: Her parents. Her best friend. Her home. Even her face. She doesn't need a mirror to know what she looks like—she can see her reflection in the eyes of everyone around her. A year after the fire that destroyed her world, her aunt and uncle have decided she should go back to high school. Be "normal" again. Whatever that is. Ava knows better. There is no normal for someone like her. And forget making friends—no one wants to be seen with the Burned Girl, now or ever. But when Ava meets a fellow survivor named Piper, she begins to feel like maybe she doesn't have to face the nightmare alone. Sarcastic and blunt, Piper isn't afraid to push Ava out of her comfort zone. Piper introduces Ava to Asad, a boy who loves theater just as much as she does, and slowly, Ava tries to create a life again. Yet Piper is fighting her own battle, and soon Ava must decide if she's going to fade back into her scars . . . or let the people by her side help her fly.

📚 Happy reading! 🎭

#themightyreaders #performingartistsonthemighty #SpinalCordInjury #Paralysis #AspergersSyndrome #Dwarfism #Stuttering #burnsurvivors

1 reaction
Post

Middle-Grade Books Featuring Protagonists with Physical Disabilities

Common physical disabilities like cerebral palsy are sometimes featured in children’s books, but it is even more rare to find other physical disabilities in books. So here are some middle-grade books featuring protagonists with physical disabilities:

1.“Insignificant Events In The Life of A Cactus” by Dusti Bowling

Aven Green loves to tell people that she lost her arms in an alligator wrestling match, or a wildfire in Tanzania, but the truth is she was born without them. And when her parents take a job running Stagecoach Pass, a rundown western theme park in Arizona, Aven moves with them across the country knowing that she’ll have to answer the question over and over again. Her new life takes an unexpected turn when she bonds with Connor, a classmate who also feels isolated because of his own disability, and they discover a room at Stagecoach Pass that holds bigger secrets than Aven ever could have imagined. It’s hard to solve a mystery, help a friend, and face your worst fears. But Aven’s about to discover she can do it all . . . even without arms.

2.”Monumentous Events In The Life of A Cactus” by Dusti Bowling

The sequel to the critically acclaimed “Insignificant Events in the Life of a Cactus” follows Aven Green as she confronts yet another challenge: high school. Just as Aven starts to feel comfortable in Stagecoach Pass, with her friends and schoolmates accustomed to her lack of “armage,” everything changes once again. She’s about to begin high school . . . with 2,300 new kids to stare at her. And no matter how much Aven tries to play it cool, nothing prepares her for the reality. In a year filled with confusion, humiliation, fears, loss, and just maybe love, can Aven manage to stay true to herself?

3.”The Chance To Fly” by Ali Stroker

Thirteen-year-old Nat Beacon loves a lot of things: her dog Warbucks, her best friend Chloe, and competing on her wheelchair racing team, the Zoomers, to name a few. But there’s one thing she’s absolutely OBSESSED with: MUSICALS! From Hamilton to Les Mis, there’s not a cast album she hasn’t memorized and belted along to. She’s never actually been in a musical though, or even seen an actor who uses a wheelchair for mobility on stage. Would someone like Nat ever get cast? But when Nat’s family moves from California to New Jersey, Nat stumbles upon auditions for a kids’ production of Wicked, one of her favorite musicals ever! And she gets into the ensemble! The other cast members are super cool and inclusive (well, most of them)—especially Malik, the male lead and cutest boy Nat’s ever seen. But when things go awry a week before opening night, will Nat be able to cast her fears and insecurities aside and “Defy Gravity” in every sense of the song title?

4.”Pixie Pushes On” by Tamara Bundy

A young girl learns bittersweet life lessons on the family farm after her sister gets polio, in this poignant and funny novel set in the heartland in the 1940s. Pixie's defenses are up, and it's no wonder. She's been uprooted, the chickens seem to have it in for her, and now her beloved sister, Charlotte, has been stricken with polio and whisked away into quarantine. So it's not surprising Pixie lashes out. But her habit of making snap judgements—and giving her classmates nicknames like "Rotten Ricky" and "Big-Mouth Berta"—hasn't won her any friends. At least life on the farm is getting better with the delivery of its newest resident--a runt baby lamb. Raising Buster takes patience and understanding—and this slowing down helps Pixie put things in better perspective. So too does paying attention to her neighbors, and finding that with the war on she's not the only one missing someone. As Pixie pushes past her own pain to become a bigger person, she's finally able to make friends; and to laugh about the fact that it is in places where she least expected it.

5.”The War That Saved My Life” by Kimberly Brubaker Bradley

Ten-year-old Ada has never left her one-room apartment. Her mother is too humiliated by Ada’s twisted foot to let her outside. So when her little brother Jamie is shipped out of London to escape the war, Ada doesn’t waste a minute—she sneaks out to join him. So begins a new adventure of Ada, and for Susan Smith, the woman who is forced to take the two kids in. As Ada teaches herself to ride a pony, learns to read, and watches for German spies, she begins to trust Susan—and Susan begins to love Ada and Jamie. But in the end, will their bond be enough to hold them together through wartime? Or will Ada and her brother fall back into the cruel hands of their mother?

6.”The Meaning of Maggie” by Megan Jean Sovern

Eleven years old. The beginning of everything! For Maggie Mayfield, turning eleven means she's one year closer to college. One year closer to voting. And one year closer to getting a tattoo. It's time for her to pull herself up by her bootstraps (the family motto) and think about more than after school snacks and why her older sisters are too hot for their own good. Because something mysterious is going on with her cool dude Dad, whose legs have permanently fallen asleep, and Maggie is going to find out exactly what the problem is and fix it. After all, nothing's impossible when you're future president of the United States of America, fifth grade science fair champion, and a shareholder in Coca-Cola, right?

7.”Braced” by Alyson Gerber

Rachel Brooks is excited for the new school year. She's finally earned a place as a forward on her soccer team. Her best friends make everything fun. And she really likes Tate, and she's pretty sure he likes her back. After one last appointment with her scoliosis doctor, this will be her best year yet. Then the doctor delivers some terrible news: The sideways curve in Rachel's spine has gotten worse, and she needs to wear a back brace twenty-three hours a day. The brace wraps her in hard plastic from shoulder blades to hips. It changes how her clothes fit, how she kicks a ball, and how everyone sees her -- even her friends and Tate. But as Rachel confronts all the challenges the brace presents, the biggest change of all may lie in how she sees herself.

8.”Short” by Holly Goldberg Sloan

Julia is very short for her age, but by the end of the summer run of The Wizard of Oz, she'll realize how big she is inside, where it counts. She hasn't ever thought of herself as a performer, but when the wonderful director of Oz casts her as a Munchkin, she begins to see herself in a new way. As Julia becomes friendly with the poised and wise Olive - one of the adults with dwarfism who've joined the production's motley crew of Munchkins - and with her deeply artistic neighbor, Mrs. Chang, Julia's own sense of self as an artist grows. Soon, she doesn't want to fade into the background and it's a good thing, because her director has more big plans for Julia!

9. “Freak The Mighty” by Rodman Philbrick
Two boys—a slow learner stuck in the body of a teenage giant and a tiny Einstein in leg braces—forge a unique friendship when they pair up to create one formidable human force. A wonderful story of triumph over imperfection, shame, and loss.

📚 Happy reading!

#themightyreaders #LimbDifference #SpinalCordInjury #Polio #Paralysis #MultipleSclerosis #Clubfoot #Scoliosis #Dwarfism #MorquioSyndrome

(edited)
3 reactions 1 comment
Post

I’m new here!

Hi, my name is dapperbass58721. I’m here because I’m being financial abused by my mother, I have cauda equina syndrome, anxiety and depression and on a day to day basis I get screamed at and told horrific things to hurt my feelings, I live with her, I have a spinal cord injury, I can’t walk without aid, I’m incontinent in bowels and bladder, I have a super puebic catheter and I have to manual evacuate. I’ve lost all 4 nerves in my legs, can’t feel my toes, can’t feel my bladder or my bowels, and my sexual functions are also destroyed. I spent 13 months before being diagnosed back and fourth from the GP, hospitals and spine units being told that it was Sciatica - until it was too late. A&E completely wronged me and now I’m suffering for the rest of my life, my mother blames me but because It seriously hurt and I was crying all the time because I couldn’t handle my nerves trapping between my spine, I had to have two operations and spend months in hospital, she told me to keep doing the exercises and screamed and shouted at me, and said I was making it up in my head. I’m looking for any advice or just people to talk to in general because I have no friends, nobody to really talk to and she’s convinced my full family that I am to blame for everything, she’s definetly twisted everybody’s opinion on me. I’m worried about her finding out about this site, she keeps all the money and tells me what I can and can’t buy, she says I’m wasting money on things I don’t need for example a monthly pill organiser as I’m on loss of tablets and find it hard to keep track. I don’t have any general knowledge about how I should go moving out when she takes everything, always has done. council I’m sure won’t help as they have enough going on and I don’t want to be homeless on the street. I have mental and physical health issues and I need equipment, commode, shower stool, walking sticks, as I have no power in my feet I have to drag myself around and hold up with my arms. this is a very traumatic situation but I’m curious as to what advice people can help with..

#MightyTogether #Anxiety #Depression #Abuse

7 reactions 3 comments
Post
See full photo

Shocked by being shocked! 😮

Every day, I put on nerve relief and muscle relief on and around the battery pack generator. It helps but yesterday, it shocked me! The tip of my first finger. I had to finish putting it on and it kept shocking me. I was shocked 4-5 times and one of them shocked BOTH the first finger and the second one. I was very surprised because it has never happened before. It shocked me just now when I was putting it on again. I have to use it because like I said it works. It’s Theraworx. You can buy it on Amazon. Yes, that is spelled right. I got the 5% lidocaine patches from my doctor. I wish they could prescribe 10% if there is one. It seems at first it works like the 4% but when I stopped using it and then needed it, it’s actually much stronger. But the whole point, the battery generator shocked me!

I wanted to show you my doggy best friend whose owners are my Aunt Mom and Uncle Dad. She knows my name. She stays by my side the entire time when I go over there and spend a few nights there. I like to get her squeaky toys because she pushes her nose on it to make it squeak and then she tears it apart. 😂😂 no worries, she doesn’t swallow them and we clean it up right away.

just a thought,

Cat

#CRPS #ComplexRegionalPainSyndrome #scs #spinalcordstimulator #SpinalCordInjury #Sci

(edited)
1 reaction
Post

Perplexed

Neurosurgeon looked at my xray and said it was normal however, I don’t know why but he took another look at it and said the leads of the SCS have moved. The biggest thing is that it causes severe pain. Something is compressing my nerves or spine or something. I think the battery pack or generator is either the culprit of the compression or the leads are or both. They asked me if I wanted a revision or removal. After all the hell I have been through with the SCS, it’s definitely a removal. I’m so happy to get this thing out of me! Now, this isn’t exactly normal for SCS so don’t get discouraged. This is quite rare but all my life of medical problems, it’s always been rare. Anyway, I got to make an appointment to discuss this with Neurosurgeon and I’m assuming about the surgery to remove it and make sure I really want this. I’m going to ask him if the severe pain from the leads are the same symptoms as sciatica or the cause of degenerative changes. But he has said he’s just a surgeon which made me laugh when my mom told me. I wasn’t paying attention. I was very out of it that day. If he says anything about the SCS and pain, I’m going to quote him, “that doesn’t happen”. 🤣🤣 sorry, I can’t help it. I like f-ing with people.

I have found the best nerve relief and muscle relief products. Theraworx. It’s on Amazon (I’m obsessed) and it’s of huge help. It’s kind of a pain in the ass because you put it on, let it dry and repeat but it’s completely worth it. You can do it as many times as needed but give it time to work. It won’t take long. It dries fast and then you put it on again. It’s for everyone, not just for CRPSers and possible sciatica. I sent my mom the link to a sciatica brace because the one we ordered was a scam. I felt like that was cruel. Like, how could you but this brace is on Amazon (I told you I was obsessed) so it should be good. I’m still SMH, though. I’ll update when I see Neurosurgeon.

Oh! Rep still hasn’t said anything. I told him about the leads which he would respond but he didn’t. Either he’s really swamped or he’s giving me the silent treatment.

#CRPS #ComplexRegionalPainSyndrome #scs #spinalcordstimulator #SpinalCordInjury #Sci

(edited)
Post

(SCI)

That’s that. I’m having to write all over again. I got a SCS ( spinal cord stimulator) which is a device with a rod in your spine and a generator in the back hip and it’s supposed to make the pain not go haywire. CRPS (complex regional pain syndrome) is the worst incurable pain (nerve) known to man and it’s called Suicide Disease. It’s incredibly painful. There’s no cure, research or treatment for CRPS. It’s definitely coming out.

it was great in the beginning! But all things must come to an end. The rep asked me if I believed that there was damage to the SCS. We were talking about that. He called the neurosurgeon because we couldn’t get an appointment and TA-DA, he got us in. After my parents bombarded the neurosurgeon with questions. I immediately started shutting down. I didn’t feel like it was my appointment anymore or if I was going to have any time to say something. Well, I wasn’t paying much attention but it seemed like my parents were done. I told him that I was feeling like the SCS was causing me more pain than usual with the rep standing off to the side nodding with support, Neurosurgeon said that doesn’t happen.Then that’s it. I don’t remember anything else. It’s possible I had an absence seizure since I do have epilepsy. I don’t remember leaving the room.

The thing that is bumming me the most is that Rep used to answer me right away.Lately, after that appointment, I hardly hear from him. He’s seen a little bit snappy in one of the messages. Maybe he’s just really swapped and kinda took it out on me for a minute. I’ll just not say anything and leave it in his hands.

Besides that, I have a caregiver who’s been nothing but of major help, my mother. Yes, I have felt like a burden but she says how can you be a burden when it’s not your fault. I try to remember that. She has her days where she’s exhausted from being a caregiver but she always gets back up and do the best damn job she can do. I love her and I don’t know what to do without her.

just A Thought,

Cat

#CRPS #RSD #Sci #SpinalCordInjury #ComplexRegionalPainSyndrome

(edited)
3 reactions 5 comments
Post

Trying really hard.

My health (both physical and mental) has been so insane these past 2-3 years. Autoimmune diseases, neurological issues, spine issues, endo, fibro, possibly lupus, spine surgery that didn't quite work not to mention panic disorder and bipolar 1. Everyday is a struggle, I'm really trying to do the best I can, one day at a time. But I feel like a failure, I'm trying to run an online business with very little help, and keep myself together. I need help for a lot of basic things like cleaning my house bc physically it's really hard. Now my mental health is acting up too and I'm coming down a manic and then mixed state. I feel like I'm deformed, like a failure, like I'm letting everyone down and I can't keep up, trapped, isolated. I'm overwhelmed and exhausted.

#Bipolar1 #BipolarDisorder #MentalHealth #BodyDysmorphia #Fibromyalgia #Lupus #HashimotosThyroiditis #Endometriosis #ADHD #Anxiety #Arthritis #SpinalCordInjury

18 reactions 8 comments
Post

I'm new here!

Hi, my name is Giftwhubbard. I'm here because I suffered a spinal cord injury and now live with a pretty high level of chronic pain, and am hoping to join some support groups so I can chat with others who can relate. Thanks.

#MightyTogether

Post

I'm new here!

Hi, my name is SusanJC8. I'm here because I received a spinal cord injury two years ago and the result is an ability to walk only very short distances due to pain. We are talking maybe 50 feet. I am having a hard time accepting this and hoped I could benefit from other people's experiences.

#MightyTogether #Depression #RheumatoidArthritis #Anxiety #EatingDisorder

4 reactions 1 comment