Be your best self.

The Truth About Failure.

The Truth About Failure.
Carly Jacobs

About 5 years ago I was studying to be a jeweller. I was also working as a casual relief teacher in several different special needs schools. Every winter this one particular school would call me in to teach in the same class for a week while the regular teacher was on camp.

The first year I taught there I met a boy called Dylan*. What struck me most about Dylan was that he was running around and playing football and carrying on perfectly fluid conversations with the staff, a bit unusual to see at a high-needs special school. I asked one of the other teachers about him. She told me he had a degenerative disease similar to Muscular Dystrophy which basically means that his muscles were slowly deteriorating until eventually he’d die. Probably before he was 20 years old. I’d never met someone like this in a special school before. He was a completely cognitive, active, behaviourally appropriate 15-year-old. Wearing trendy sneakers with gel in his hair. We spent the afternoon playing an intensely competitive game of basketball.

The second year I taught Dylan, he was in a wheel chair. He could still push himself around but his speech had begun to slur. He could still tell me to shut up when I teased him about his stupid sideways cap and he could still try to convince me to let him watch M-rated movies in class. He could also still bear weight on his legs just enough so that he could go to the toilet on his own. It sometimes took him 45 minutes to do it, but he did it.

The third year I taught Dylan he was in a motorized wheel chair that he controlled with the little movement he had left in his arms. He could no longer eat and had to be tube fed. He also couldn’t see anything unless it was ten centimetres from his eyes. I put my face inches from his and with a big smile I said ‘Hey Dyl! Where’s your lame baseball cap?‘. His eyes focussed and unfocussed and focussed again. The corners of his mouth twitched upwards in a brief smile. I heard the faint words drift from his stiff lips ‘Shut up!‘. He was still in there. Later that day the burly male assistant in the room needed my help to take Dylan to the bathroom. When he was settled on the toilet he beckoned me to come close to his face. He whispered in my ear ‘Please turn around. I quietly excused myself and asked the assistant to yell for me when he needed help getting Dylan back in his chair. I’m really not an emotional person at all. I never cry. But that moment broke me a little. Dylan broke me a little. This gorgeous, funny, intelligent young man whose body was failing him. Failing him to the degree that he hadn’t taken a shit or piss on his own for the last two years. This amazing kid, who at the age of 17 politely asked a young woman (who was hired to help him) to leave the bathroom so he could maintain a tiny shred of independence in our short friendship. He held on to every scrap of dignity he had until his body literally ripped it away from him. He never stopped trying. To do things that most of the world don’t even notice that they’re doing.

I don’t like to write about that part of my life because it’s not mine to own. I don’t feel that I have the right to tell the stories of these kids and their families but Dylan’s a really cool kid. He’d think it was awesome if he knew I wrote about him, like he was famous or something.

He doesn’t know it but he serves as this constant reminder to me to harden up. If I get cranky because I don’t want to go to the gym, I think of Dylan. If I don’t get a part in a play that I auditioned for, I think of Dylan. If I don’t land an awesome writing gig that I really wanted, I think of Dylan. I get to walk, run, dance, fall over, get hurt, have sex, earn money, travel and hopefully grow old.  I’m not a person who takes anything for granted but if I ever catch myself having a moment where I’m feeling a little too sorry for myself, I think of Dylan. I don’t have this bullshit hero complex where I feel like I have to succeed for him but I feel like he’s taken away my option to not try. Honestly, it’s really hard to complain about having gained a few kilos when you’ve spent the day with a kid who can’t chew because his facial muscles have deteriorated. It doesn’t matter if I fail or hurt myself or make a mistake. Because failure is a privilege and I’m so lucky that I have a body and a mind that lets me do that.

And at the end of the day if I can take a shit in peace without the help of two strangers, it’s a bloody great day in the life of me.

* Name changed to protect identity.

P.S I recently read this fantastic article by Stella Young called We’re Not Here For Your Inspiration about able-bodied people using people with special needs as their ‘inspiration porn’ as she calls it. I’m not into inspiration porn at all. Dylan is an inspiring person. Not an inspiring person with special needs.

26 Comments

  1. Nadine Armiger 12 years ago

    Oh, wow. Brilliant.

  2. Grit & Glamour™ 12 years ago

    I love this post. I have a cousin in a wheelchair who was paralyzed at age 16 in a motorcycle accident. I haven’t had the opportunity to spend time with him in many, many years, but when I was 15, he bought me a bottle of wine and we got drunk together, and he appreciated my quirkiness and I noticed that he never, ever complained. Not when he had to break down his own wheelchair to put it in his car and drive himself around, not when he was tired, not when he had to change his own colostomy bag. He was always funny, open-minded, and optimistic, and has been my lifetime inspiration to never take my able body for granted. To this day, it’s why I walk so much…you never know when that walk might be your last, when a simple walk on two legs again could suddenly mean so much.

    Thanks for sharing your story. This is why I keep blogging and reading blogs. For beautiful, real, poignant, and inspiring reminders just like this one.

    • Author
      Smaggle 12 years ago

      Thank you love! It’s important to talk about stuff like this occasionally.

  3. Alex 12 years ago

    Beautiful, thoughtful post Lady Smaggle. Thank you for this story, and the reminder it serves as.

    • Author
      Smaggle 12 years ago

      I actually spoke about Dylan as a guest lecturer and realised I hadn’t written about him. x

  4. Amanda v 12 years ago

    Carly u have me in tears! Such a
    Beautiful post well done xxxx

    • Author
      Smaggle 12 years ago

      I thought you’d like this one. 🙂

  5. Fiona 12 years ago

    I hate Duchenne’s. HATE IT. 🙁 🙁

    • Author
      Smaggle 12 years ago

      It’s one of the worst things in the world to watch. Worse with Dylan because his disease was quite rare which meant he was completely able bodied and very suddenly ended up wheel chair bound.

  6. Sugandha 12 years ago

    I loved this and goddamn these hormones, but it made me tear up. Maybe it’s because I have a 17 y.o little brother, but more I think,because we need people like Dylan in our lives.

    • Author
      Smaggle 12 years ago

      I agree! He’s a legend.

  7. Denver 12 years ago

    Loved this post, you’re absolutely right – we complain so easily when what we have to deal with is hardly anything compared to others.

    I also read that post by Stella Young – definitely on the money.

    • Author
      Smaggle 12 years ago

      I loved that article so much. That’s why I wanted to be careful when writing this article.

  8. Sarah Von 12 years ago

    This is one of my favorite things you’ve ever written <3

  9. Nina 12 years ago

    It’s awkward when you start getting teary on the bus…

    ? this post, Carly

  10. Nicole 12 years ago

    I loved this story. My grandfather (who I’m very close to) has Klippel-Trenaunay-Weber syndrome (
    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001205/) has, over the years, lost so much of his independence to an awful disease. His leg is affected with excess bone and tissue growth and varicose veins, his heart is under immense strain due to the effort it takes to get the blood around his body but he doesn’t complain. He can still go to the toilet by himself (depending how his leg is going) but has lost his license and can’t get around without either a scooter or frame. He’s also developed Parkinson’s Disease and is in hospital once a month for transfusions which have helped him enormously. When people complain about getting old or having wrinkles it infuriates me; it’s a privilege to get old and wrinkly. It’s a privilege to have tired legs and sore feet, to be able to just duck to the shops and it only take 5 minutes instead of an hour. Dylan sounds like an awesome kid and helping him retain some dignity during an awful experience shows you have a great heart.

    • Author
      Smaggle 12 years ago

      It really is a privilege to grow old. x

  11. edg 12 years ago

    <3

  12. Sarah Rooftops 12 years ago

    Stella Young’s article is wonderful, isn’t it? It’s so thought provoking. I’ve been feeling a bit uncomfortable about all the macho advertising of the Paralympics (in the UK; it might be different elsewhere), and it helped me to clarify what it is I don’t like about it.

  13. JessB 12 years ago

    Wow Carly, how super touching. Lovely writing, and Dylan sounds lile a realyl great kid.

  14. Katherine 12 years ago

    Thanks for the perspective.

  15. Rach // In Spaces Between 11 years ago

    Tears! Thank you for writing this Carly. I’m a big believer that everyone comes into our life for a reason, and the lessons – or reminders – here about humility, determination and perspective are really beautiful. Through your sharing, we’re reminded as well. xx

Pingbacks

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