Disability

You Don’t Know my Disability As Well As I Do

          As I make my way through life with a disability, I learn what tasks I can and cannot do.  I know I cannot open the fridge with my hand, so I use my wooden spatula to push it open; I know I cannot do my hair, so I ask my mom to braid it or put it in a bun for me; I know I cannot buckle my seatbelt, so I ask my mom, or whoever I’m driving with, to do it for me.

          Oftentimes, when I ask someone to assist me in completing some sort of task, they seem shocked that I cannot do it myself.  There have been times where I ask someone to help me and their response is, “I think you could do that if you tried.”  When this happens, my only response is, “How do you know I haven’t tried?” It shocks me that many other people think they know my body and my disability better than myself.  If I thought I could open my own food, I wouldn’t have bothered asking for help—it’s much more convenient for everyone if I do things on my own, so why would I ever waste time asking for help if I didn’t really need it?

          Because I enjoy being as independent as possible, I try doing things without help often, and I sometimes find that I can do new things.  Most of the time, however, I can go through the process of the task at hand in my head and know if I’ll need help without even attempting it.  

          The bottom-line here is: when I ask you to help me with something, whatever it may be, please trust that I do, in fact, need your help.  I know my body and my disability better than anybody else, and I’m not trying to be lazy when I ask for assistance with certain things that are difficult for me.  

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Disability

Why You Shouldn’t Laugh When I Mention Harry Styles

          Let’s face it, everybody that knows me knows I’m “obsessed” with Harry Styles.  It’s easy to listen to me ramble on about how much I love him—or simply mention his name—and get annoyed.  But let me just tell you: there are some things you don’t know that you should.

          Ever since late 2010, I’ve loved, admired, and supported One Direction, particularly Harry Styles.  Posters adorn the walls in my room; my camera roll is full of pictures of them; my lock screen is me with Harry Styles; and I have all their albums on my phone.  To most people, I look like any ordinary teenage girl with a boyband obsession, but that’s not true.  My “obsession” is more than that, and here’s why.

          Living with a chronic illness such as Transverse Myelitis can be difficult.  As a fifteen-year-old girl, I visit way more doctors and hospitals than most people my age, and I endure so many painful tests and experiences that I shouldn’t.  Although I’ve learned to accept that this is the way my life is, things haven’t always been the easiest for me.

          When I was just ten years old, I was battling depression.  At such a young age, I didn’t quite understand why my mind was filled with such dark thoughts of pain and sadness.  There were nights when I would cry myself to sleep and wish I wasn’t alive, or I would think of how to hurt myself while I should’ve been concentrating at school.  I was only in fourth grade and I should’ve been living my life like any normal little girl, but I wasn’t because of TM, which brought on my depression.

          Honestly speaking, I would not be here if it weren’t for Harry Styles.  During my particularly rough bout of depression between 2012-August 2014, I always reminded myself that I had Harry to keep me happy when I needed him.  And so, One Direction’s music blasted through my speakers at my times of crisis, their videos took up my YouTube likes, their song lyrics became my mottos, and I didn’t ever feel depressed when I thought of them.  When I’d start crying myself to sleep, I no longer did so for hours, because the happiness Harry brought me kept me going.

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Harry and I with my first book.

          The greatest moment of my life was when the Make-A-Wish Foundation granted my Wish to meet One Direction in August 2014.  I have never been as happy as I was the day I met them.  All the boys, Harry especially, were so incredibly kind.  They didn’t act bored and simply pose for a picture—they spent valuable time with me and shared conversation.  I presented them with my first book, 5k, Ballet, and a Spinal Cord Injury, and Harry was extremely impressed and enthusiastic.  As Harry and I hugged and exchanged “I love you”s, I knew that I would be happy forever.  Since the moment I headed to their concert with tears of happiness streaming down my face just after meeting them, my depression hasn’t returned.  Who knew it could take so little—a conversation, hug, smile, and “I love you more”— to cure something so big?

MEMORIES

          Aside from One Direction’s music cheering me up, their concerts have been the greatest experiences of my life.  Whenever I need to travel on a medical trip, my mom takes me to see them perform in order to make a not-so-fun trip amazing.  Starting with my first One Direction concert in Minneapolis, I’ve made so many incredible memories on trips that normally wouldn’t have been fun because of One Direction.  They completely changed my outlook on these medical trips, because now, good memories are associated with the cities I visit for appointments.

          My greatest, most memorable One Direction concert was in Baltimore on August 8, 2015, almost a year after I’d met them.  I was there to see doctors at Johns Hopkins Hospital, but having their concert to look forward to made me excited to go to Baltimore for once.  I had been expecting to have a wonderful time, but not this much of a wonderful time.  From the moment the concert began, Harry paid attention to me—he blew kisses at me, waved, gave me peace signs, and communicated with me throughout the entire show.  The best moment was when he knelt down in front of me, pointed at me, and tossed me his towel.  It sounds crazy and stupid to most people that I’d be excited to get a sweaty towel, but the fact that he remembered me almost a year later and so very intentionally gave me his towel (that he normally carelessly throws to the back of the crowd) was simply amazing.  No words other than “amazing” can describe that experience: my favorite singer remembered who I was, read my book, and treated me like I was the only fan he saw in a crowd of 80,000.  It was no surprise I was bawling as I told him thank you, and it was no surprise he smiled back and gave me a thumbs up.

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Harry and I talking at the concert in Baltimore.

          Baltimore is one of my favorite places because of Harry now.  Every time I’m strolling through the city, memories of Harry treating me like a princess come back to me, and a smile makes its way onto my face.

          So … yeah.  You can laugh when you notice Harry Styles hugging me is my lockscreen on my phone; you can tell me I’m too “obsessed” with him, but I hope you understand just how much I need him.  Without him, I might not still be here.  Harry is the reason I’m able to smile every day, and I couldn’t be more thankful for that.  So, thank you again, Harry, for giving me Something Great, helping me Through the Dark, and giving me a reason to keep going.  I’m honored to call myself your most special fan.

 

Disability

Why You Should Think Twice Before Telling Me I’m “Lucky”

          I’ll admit it: I am extremely fortunate.  Instead of staying a quadriplegic like I was at eight-years-old, I’ve made a tremendous recovery, even though I’m not perfect.  I am, indeed, lucky that I’ve regained so much that I once lost—I can walk, move my right hand slightly, and use some parts of my arms.  This is something to be happy about, because I am “lucky” that I’m not still a quadriplegic.

          However, I am not lucky because I get accommodations or privileges because of my disability.  When I got to meet One Direction for my Make-A-Wish trip, I was not “lucky.”  It’s easy to say that I am because jealousy takes over our rational thought, but, really, why do you call me “lucky?”  Would you rather have transverse myelitis and get to meet your favorite band, or would you rather be healthy and not have that opportunity?  The truly lucky ones are the healthy fans that get to meet 1D—not me or anyone else who had a Wish trip.

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Me with One Direction on my Make-A-Wish trip in 2014.

          Meeting One Direction was the happiest moment in my life, and nothing else will ever replace that.  I felt truly happy when I was with them, and you can see that in my eyes.  To me, I deserved that happiness for all that I’d been through.  Those who call me “lucky” due to their uncontrolled jealousy and irrational thought don’t understand the harmful words they’re saying.  Sure, it is not fair that some fans get to meet them while others don’t, but it is unfair to call me lucky for it, because I’ve had to go through medical tests and unpleasant things that you didn’t.  So, who really is the “lucky” one here?

          This situation doesn’t just apply to meeting 1D, either.  If I am more comfortable sitting in a chair than on the floor because my neck hurts when I don’t have a chair, I should get a chair—and having that accommodation given to me does not make me “lucky.”  Skipping the entire line at the Richard Rodgers Theatre to see Hamilton does not make me “lucky,” because I needed to get inside ahead of everyone else since my disability inhibited my ability to stand for extended periods of time.  The phrase “you’re so lucky” works better the other way around—“you’re so lucky” that you have a healthy body that allows you to not need the accommodations I need.    

          I know, it is too easy to get jealous; we’ve all been victims of jealousy before.  I’m not angry at those who tell me I’m lucky; I just want them to understand why they should think twice before telling me that.  Because, really, which choice would you make?  Would you rather be “lucky” that you receive accommodations and privileges due to disability or “lucky” that you’re in good health?  The answer is easy for most.

 

Disability · The Books

How Writing a Book Really Goes Down

          As an author, a common question I get asked frequently is, “How long did it take to write your book?”  For 5k, Ballet, and a Spinal Cord Injury, my answer is always “thirteen months,” and for Determination, my answer is always “about two years.”  Everyone has their own reaction to that, but most people are shocked by the amount of time spent solely on writing a book.  But let me tell you—I’m not!

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Jen (left) and I (right) with our first book: 5kBalletand a Spinal Cord Injury.

          It may seem crazy to you, but those thirteen months and two years were not all spent just on writing only.  I feel like readers think their favorite author sits back, cracks his or her knuckles, and spills their writing out into a masterpiece, but I’m here to tell you that it simply does not work that way.  There were times where neither me or Jen Starzec, my co-author, would be in the mood to write, and so we didn’t.  Sometimes these moods lasted for a couple hours; sometimes they lasted for a couple weeks—it all depended on how we were feeling.  Writer’s block didn’t take over us too terribly often since we both were writing about real events, but it was still there occasionally.  

          Writing books with a co-author isn’t always a walk-in-the-park either.  Despite the fact that Jen and I are such good friends we’re more like sisters (read: my first post), there were still a few disagreements and misunderstandings.  If you’re going to write a book with a partner, you both have to agree on things, and that’s where some trouble arises.  Whilst writing 5k, Ballet, and a Spinal Cord Injury and Determination, we bickered over the most trivial of things (as mentioned in the acknowledgements of Determination), such as whose name would go first on the cover, whose chapter began first, what the cover art should be, etc.  Of course, all these disputes were solved and apologies were exchanged, but it wasn’t easy.

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Signing books in Baltimore, MD.

          In all honesty, most of the thirteen months and two years was not spent writing.  At the beginning, we wrote a little bit in each book before we got bored and decided to take a break.  Months would go by without writing a single word.  For both books, we picked up the pace at the end of those time frames; in fact, most of Determination—about half of it—was written in the last two months.  I may or may not have written almost all of that second half at school as well (whoops)!

          Aside from actually writing the book, Jen and I had to work together on other things as well.  Since we weren’t “professional” authors, we had to find our own editor and figure out how to publish our books on our own, which was a challenge.  We read each other’s chapters aloud on FaceTime in order to catch any mistakes or awkward wording before we passed 5k, Ballet, and a Spinal Cord Injury on to Jen’s dad for editing.  For Determination, we were pressed for time once we finished writing the book, as I wanted to present it to my sick aunt, who I dedicated my portion of the novel to, so we were left to fend for ourselves and trust we caught all the mistakes.  That’s right: Determination had no editor, surprisingly.  And I still treasure it more than 5k, Ballet, and a Spinal Cord Injury.  (Although, I do treasure both our books.)

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          Throughout the writing process, although parts of it may not always be the best, I learn more about myself and Jen; we’re brought closer together.  Some of the chapters we write are emotional, as we discuss our disabilities and thoughts and feelings, and that’s okay.

          I think it’s wonderful that we’re comfortable enough to be vulnerable in front of each other and the world, because every sentence we write has an effect on readers in someway.     

*Both books can be purchased on Lulu and Amazon.* 

Disability

How Having a Disability Can Make Friendships Stronger

          Friendships are integral parts of life; they’re relationships between special people who understand each other and stick by each other’s side.  It is important for our development and mental health to have people in our lives who care for us and love us, and friends can provide both those things.  Every person is unique, of course, and that quality we all possess makes the world go ‘round.  But friendships are also unique in their own way; there are no two friendships that are exactly the same, and that is special.

          For some disabled people, it can be difficult to find true friends, simply because there are some people out there who are just too lazy to take the time to get to know them.  Able-bodied people, especially teens, are often afraid to make friends with disabled people for many reasons—they might not want to be seen with them, help them, or take the time to appreciate them as a person who is no different than anybody else.  And that is wrong.  I am lucky to have never experienced this cruelty, but I know it happens, and it shouldn’t.  I have a group of wonderful, supportive friends who have taken the time to understand me and my disability, and I appreciate it so, so much.  My friends are there for me when I need help no matter what the situation, and I can count on them for almost anything.  

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Jen (left) and I (right) in Baltimore, MD, March, 2012.

          When I met Jen in 2012 in Baltimore, MD when we both were at Johns Hopkins Hospital for doctors appointments, I knew we would have a special friendship.  With most of my friendships, it takes time to really understand each other and become close.  But Jen and I?  We were close within four hours of knowing each other—and here’s why.

          Jen and I both have transverse myelitis, a rare, neuroimmune disorder that damages the spinal cord, and it affects us in similar ways.  While TM wasn’t a major topic of discussion when we first met, as we were only ten and fourteen, it has brought us together.  There are times where we need to rant about how annoying our body is being or whatever, and we’re both there for each other.  I can rant about my disability to my friends at school all I want, and I know they’ll listen and do their best to understand, but they don’t truly get it like Jen does, because they don’t have TM.  Jen and I can make dumb disability jokes and laugh about our terribly working bodies without there being an awkward silence or chuckle, as if the able-bodied people don’t want to “offend” us.  When I get to visit Jen in person, I’m always there to glare at anyone who knows better than to stare at a person in a wheelchair, and I do it proudly.  (Because, really.  Little kids are fine, but teenagers and adults?  My glare surely scares them away.)  Jen and I complain about medical tests and odd questions we receive and our lacking independence and everything in between.  

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Credit: Danielle in Chicago for Flytographer.

          Of course, there are times where we simply laugh together and have a great time as any normal friends do, and it’s wonderful.  Our age difference makes us more like sisters than just friends, and I find myself going to Jen for advice more often than not, and her guiding me through stages of life she’s already completed.  Like I’ve said, all friendships are unique, but especially mine and Jen’s; our disabilities didn’t hinder our friendship, but instead strengthened it.  I mean, really, what friend would help you take a shower when your mom isn’t around?