To my 12-year-old, newly diagnosed self:
For a long time, you will regret your decision to tell your parents that you were hurting. You will wish you had kept the pain and the blood and the fear a secret so that you wouldn’t be different and sick. You will wish it very much, using up your wishes on birthday cakes and fallen eyelashes. But first, let me tell you, you did the right thing and that not telling your parents would not have kept you from getting sick.
Right now you believe it is your fault that you are sick. You look in the mirror and see someone who looks shrunken from herself; you can see that you are different from your friends and the kids at school. You wonder if they can tell you are sick and what they say to one another about you when you are too sick to go to school. You feel guilty because your family is hurting for you; you can hear your parents trying to console one another after you go to bed, but you’re not sleeping, you’re awake and sometimes crying.
You do not believe any of this is real. It feels like an alternate reality where you are yourself but gravity doesn’t exist and nothing makes sense. You sit by the phone in the kitchen for hours waiting for the doctor to call to tell you it was all a mistake, and every minute that passes without his phone call breaks you at your core a little bit more.
You are frightened, scared, and you feel tremendously alone. You don’t believe that anyone understands you and you don’t want to talk about it, because talking about it means it exists, and it doesn’t, so you don’t talk. You don’t take your medication either, because that would be giving in and resigning to a chronic illness you did not agree to, and that is not fair and the world is supposed to be fair. You feel robbed of the glimpse of independence being 12 provided you; you are envious of your peers who are not worried about where the closest bathroom is and who don’t know that colon and large bowel are synonyms. They are oblivious – this frustrates you endlessly, but you also think it is beautiful in its naivety. They are sheltered while you unknowingly ended up in the middle of the hurricane without even a raincoat.
You do not know what any of this really means. What about school? Or college? What about a boyfriend or even eating out? What are you supposed to tell your friends? What happens if you don’t get to a bathroom in time? You have so many questions, but don’t know how to ask them and when you try you just end up with a lump in your throat that feels like it’s choking you. When your brother whispers in your ear ‘where there’s a will there’s a way’, it makes you sad because you can’t figure out how you have gone from healthy to sick without being able to save yourself.
Your biggest fear at your first GI appointment is that you will have to have a bag. It is the only question you ask the doctor and you are terrified. I want you to know that one day you will need surgery – and you will have chosen it – you will earn your ostomy and be genuinely and sincerely grateful and happy to have one. You will see your ostomy every day and will not once regret your decision.
In so many ways, you and your family have no idea what the next ten years will bring – you are ill prepared for the realities of your own disease, but even though this makes you overwhelmed, this is something that will help you. That sounds confusing – but you don’t have any preconceived limitations. Your parents will encourage you to pursue your goals fearlessly and relentlessly and the core of your being will not change because you will not let it.
Right now the mere idea of getting involved in an IBD organization makes you feel sick, but I want you to know that ten years from now you are involved in so many IBD organizations and projects that every time you talk about them, your mom can’t keep them straight. Know that you lend your voice and become an advocate for everyone with IBD; know that you can and will make a difference.
And when you are asked why you are involved, you will tell them this: “I do it because of that 12-year-old version of myself who was scared and unsure and alone. I do it because things should be better for the children that come after me.” And know that, in a small part because of you, things are better.
You will write that you hope to “rise above your disease and excel”, and since then ‘rise’ and ‘excel’ are the two words you always come back to. You will be very sick for a very long time, and while the end of the illness is far from being on the horizon, it does not mean that your life will be void of meaning, worth, excitement, joy, friendship, or success (if anything, it will be full to the brim of it all).
So rise and excel, shoot for the moon and don’t accept anything less. Because, I’ll tell you a secret, ten years from now you are doing just that.