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.

IMG_4167
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.

 

Advertisements
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!

1964809_685029504876445_941853873_n
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.

ST signing
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.)

books

          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.  

flashback
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.  

girls 1
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?