My twin sister and I were born eleven weeks premature, each weighing less than a bag of sugar. We survived against all odds. However, as a result, I have cerebral palsy, affecting my legs.
Twenty years ago this week, I underwent major surgery that turned my life upside down and back to front. I never wanted the surgery but when a doctor told me in no uncertain terms that without it, I would be confined to a wheelchair by the time I was thirty, I didn’t have much choice. I felt backed into a corner, unable to see any other way forward. I was promised greater mobility and independence than I’d had for several years and I knew that I couldn’t let that chance pass me by. I was concerned about the impact such anaesthesia would have on my already fragile stomach, but everyone put those symptoms down to my hormonal age and did not see any reason to postpone the multiple operations I needed.
So very nervously, I had the first one and knew as soon as I awoke from the 3-hour ordeal, in which the consultant broke and re-positioned both my femur bones, that something was extremely wrong. I could not feel my legs at all (no one told me or my parents that I would be given an epidural for pain relief) and I went into complete shock. As it happened, my whole body shook internally and the agony I felt over the next few days was the beginning of a decade of pain. Devastating, exhausting pain. After more major surgery, which required me to wear plaster casts from hip to toe (made all the more undignified and ghastly by the arrival of my period!), more anaesthesia, antibiotics, morphine and almost a year off school, my dear, sensitive body pretty much collapsed. Life was never the same again.
In many ways, I am grateful for it. My journey to health and well-being led me on a path of deep self-discovery, and ultimately to incredible blessings. But in this moment, I want to acknowledge all that was lost to me in those years, and the utter despair I felt as a teenager when the promise of a new freedom vanished into thin air. I want to reassure her, to comfort her and let her know what I know now, what I’d tell her if I could meet her in some kind of parallel universe…
Dear 14 Year Old Me,
I know you are scared. I know you do not want to do this. I know that everything feels out of your control. But those caring for you truly do have your best interests at heart.
It will be hard. It will be very hard. But you will never be alone and there are beautiful Angels protecting you always. You will not die, no matter how difficult it may seem to stay alive. You are safe.
Your life has not been wasted. It has just taken a different route. You’ll see.
Your dreams may feel shattered but you will dream new dreams and surprise people in ways you cannot imagine right now.
Doctors know a lot. But they don’t know everything. Listen to them but listen to yourself most. Your body, your heart, your spirit know what they need.
Medicine will only go so far – there are so many other ways to feel well. Take the medicine without guilt if that’s what gets you through this moment. But know that you will also find other ways to heal.
Tell others how you really feel. Talk to people you trust. It’s OK to ask for help and it is not a weakness. Ever.
No-one will ever truly understand what it’s like for you and friends will come and go from your life, but you will meet those who see you for who you are. Be patient for your ‘tribe’. They are waiting in the wings and will arrive steadily throughout your journey.
Breathe. Consciously breathe. Let yourself relax as much as possible.
Time heals a lot. It doesn’t make anything disappear but it does improve. I promise.
Don’t worry so much about school. Education is important but it isn’t as important as your health and will never be as important as the lessons you learn in life; nobody will ask for your grades when you’re an adult, anyway!
It’s a GREAT gift to be ‘different’. You’ll get to do exciting things and meet brilliant people. You don’t need to do what everyone else is doing to be happy or successful.
You will learn what true success is. You will learn who you are.
It’s not easy to watch someone you love suffer every day. Your family are all doing the best they can with what they know, as are you.
Whether you walk freely again or not, you will move mountains in your life and you will, one day, teach others that anything is possible.
You are not to blame for any of this. No-one is. Sh** happens and you will never know all of the reasons why things turned out as they did. Accept that as much as you can. It’ll make everything much more bearable.
You are strong. You are capable. You are wise. You are perfect as you are. You are LOVED.