A letter to my 10 year old stroke self

My name is Jonathan and I had a stroke in 2002 when I was ten years old. The stroke left me unable to walk, talk or do most things a 10-year-old should be doing. 

I was sitting in my Doctor’s office when I went a bit funny and the GP told my parents to get me straight to hospital. There they ran a myriad of tests, only ordering an MRI two days later which is when my parents were given the diagnosis of stroke.

What we didn’t know before the stroke was that I have MoyaMoya disease. 

I was in hospital for three months and then for a further twelve months as an outpatient. Occupational, Physio, and Speech Therapy appointments became the fabric of my days. It was tough, I never told anyone how tough it was for me, I just kept telling myself everyday not to give up. 

If I could talk to my 10-year-old self, this is what I would say………

Jonathan, you have had a stroke, it is not the end of the world, but things are going to be very different for you from now on.

You are going to do lots of repetitive exercises and tasks, they are to build your body and brain back up. It will be painful and hard, and it will be worth it in the end. You will keep getting better physically. This work will get you back to school, playing sport and going out with your friends. This body is going to get you all the way to University. First a biomedical degree and then a Master of Occupational Therapy where you will reach your goal to help other people -  like you.

Please don’t forget to deal with the emotional toll that stroke has had on you. I know that you fear hurting your parents again, but you must be honest with them. Stop hiding your feelings with a smile and a nod of Okay. 

Focus as hard on your feelings as on your physical rehab. Your emotions may be forgotten in the everyday grind to get back to your life, but if you don’t address them you will still be dealing with the fallout as a man.

Ask your parents to make sure that the hospital is giving you the psychological support that you need and ask them to find a peer (strokekid) that you can talk to. Because even though you love your friends and they treat you the same, which I can’t thank them enough for, you will still feel lonely – everyday. 

It’s hard to express yourself when you are a kid, remember it’s alright to explode when the emotions get on top of you and you can’t keep a lid on your grief. But recognise you will have a lot of confused family, friends and teachers if they don’t know you’re not coping mentally. Try to be patient, people are trying to help the best way they can.

Your teenage years are going to be really, really, hard, every moment will feel like a battle for you. But you are going to do it. You will complete your school work even though it takes longer. You will get a date even though you were afraid that you wouldn’t, and you will reach most of the goals that you set yourself.  

You have more resilience than many of your peers, and you will understand the value of hope.

Jonathan is on the left