Tuesday, December 6, 2011

Dear Twelve-Year-Old Me,

Dear twelve-year-old me,

Right now, life is pretty good for you. You've just started High School. You're the Form Captain for your class. You got into the audition-only choir at school. You're in concert band and orchestra playing tenor saxophone, and you were just selected to be the solo singer at the School Easter service. If I remember rightly, your favourite show is The O.C currently and every morning you head to the gym with Mum before walking up to school. Every day is hectic - you're running around from one rehearsal to the next, texting your friends frantically as you hurry around the school. Yeah, right now, life is great.

But on April 15th that's about to change. You're going to fall over at the school bus stop and hurt your ankle. Yep, in front of EVERYBODY. But don't be embarrassed. Everyone is really nice to you and they look after you as you wait for the ambulance. The next few months are going to be pretty tough. You'll go to lots of appointments, where most doctors aren't going to believe you when you say how much pain you are in. But the pain is real. So don't let anybody tell you otherwise. You will be diagnosed with CRPS (Complex Regional Pain Syndrome) 8 months later, which is an incurable nerve condition that leaves you in excruciating pain 24/7.

From now on you're going to rely on crutches and a wheelchair to get around. At first, it will be hard because everyone stares at you, but keep your chin up - people stop staring so much after awhile. School stops being as fun as it was at the beginning. Your friends are going to leave you now that you're "weird" and sick. But next year, you're going to meet some amazing people who will still be your friends for years to come. I know it's cliche to say "it gets better" but it truly does. So please, don't give up hope. Just keep studying and never stop singing. Music will save your life countless times in the coming years.

In 2007, you're going to fall into a coma and nearly die. It's going to be one of the scariest experiences for you and your family, but don't worry. You're going to wake up and you'll be ok. From here on in, you're going to spend a lot of time in hospital, and you'll get to know the nurses really well. Make the most of it - befriend the other patients, and try your hardest to bring a smile to someone else's face every day. You can't change where you are, but you can change how you deal with the situation. You'll be sick of hospital food by your 6th week as an inpatient, but Eryn will come in and swap "real" food for your hospital meals. Remember to thank her. Rehab is going to suck. You're going to hate the phrase "No pain, no gain" and want to scream every time a physio or doctor says it to you. Please don't get too mad. They are just trying to help.

When your CRPS starts to spread, you're going to be scared. That's ok. You're allowed to be scared, and crying is not a sign of weakness. It's a sign that you've been strong for too long. So cry. Let it out. And remember you're not alone. You're going to meet some of the most amazing people because of this disease. You'll make friends with other patients here in New Zealand, as well as those living in California, New Jersey, Canada, Israel, Australia, to name but a few. These people are going to help you survive each day. They understand what you're going through and when it feels like nobody else "gets" this pain, they do. So never forget that.

If I had any advice for you, it's enjoy these last few months of normality. Enjoy playing your saxophone. In 2008 when you stop being able to play it, you're going to miss it more than words can say. Appreciate every step you take without pain, and please try to remember this feeling. I can't. Every time you see something beautiful, stop and soak it up. In 2009 when your CRPS moves into your eyes and you start to lose your vision, you'll miss not seeing the ocean sparkle or your cat rolling about in the sun. When you get that Merit next year in your exams, don't cry. Hold onto the fact that you got 25 other Excellences. Remember that it's ok to say you're not ok. So ask for help when you need it.

When you're diagnosed it's going to seem like the end of your life. But it's not. It's just the start of a new life you didn't imagine you'd be living. But trust in God, trust yourself and your own strength, and keep on keeping on. You'll be ok. Trust me.

Love, Your Future Self.


  1. This is a beautiful post, Ailsa. Your strength is inspirational! xx

  2. This is a great post! It made me feel like I was talking to myself as a younger version.. (though I never played Sax. LOL) just the way it is written is beautifully done and so honest. I loved it!

  3. Hi my name is Melanie and I found out a month ago my daughter has CRPS I found you by chance while surfing the net looking for people in NZ with this awful diagnoses. Her name is Skyla and she is 13yr I see the same age as you where when you found out. Was wondering if you had any advise for school as it's in her right hand/fingers she can't write anything down and the school doesn't think she comes under any founding for a writer for test/exams I'm still trying to find that out myself.. She too is like you with dreams, she is learning the guitar and is a black belt in karate and was going for her first dan this year.. I hope you have a pain free day or less pain soon. I see your from Wellington so are we, It make us feel we are not alone even though I wish this wasn't around to begin with...Take-care peace and love..

  4. Hey Melanie. Thank you for your comment. I am so sorry that you're daughter has been diagnosed with CRPS. CRPS is a beast and dealing with it as a teenager is not fun in the slightest, but I'm really glad you found my blog and realise that you're not alone. Firstly, in terms of the reader/writer for tests and exams, she most certainly IS eligible. I used a laptop to type as holding a pen was too difficult, so either using a laptop or reader/writer is an option. If the school aren't being helpful, approach either the head of the Special Needs Unit/Teacher Aids and talk to them, or go straight to NZQA and get information from them about how to apply for assistance for exams (NZQA will only be able to help for external exams, not internal assessments, however). I used a recorder in class to record all my classes because I wasn't able to write, and I also got photocopies of other people's notes as well as the teacher's notes. That really helped me keep up to date with all my work and stay on top of it. I was also under the hospital school as I spent a lot of time as an inpatient while in High School. As you're a fellow Wellingtonian, if you'd be interested in meeting up I'd be more than happy to meet with you and/or Skyla. CRPS has a way in making you feel like you're going through this all by yourself, and it's really nice to have contact with people not only online but also face to face, to remind you that you're not going through this alone. Are you on Facebook? xx I hope Skyla is having a manageable pain day. I just got home from University and am exhausted and sore, so am resting up on the couch!

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