#rarediseasejournalingchallenge Day 3

This is a fun one and a good way to reflect on who you were, who you are, and how far you've come.

Think back to a time before you received news of your child's medical condition. Write a letter to this "pre-diagnosis self." If this doesn't apply to you (i.e., if you are the one with the rare condition and have had it since birth), choose a significant moment in your rare disease journey (in my case, for example, it might be dialysis or kidney transplant) and write a letter to the "pre-" you.

Remember to be gentle with yourself. Chances are, you have a tougher skin now than you did then! Isn't that one of the great side effects of rare disease? It challenges us and grows us, and the things we couldn't have imagined handling well (or at all) years ago are now situations we've successfully dealt with hundreds of times. Per day. Ha!

Here's the first journaled page of my letter with the complete text of it typed below.

Dear Jessica,

You will fight everyone this year: your parents, your doctors, yourself. You will be brought to the mercy of a machine, but in your pride you will never cry uncle.

But keep in mind that you are not the only one with challenges. While you harbor resentment toward your parents for keeping a watchful eye on you as you take your medicine every six hours - exactly as they have ever since discovering the transgression of your secretive noncompliance four years ago - remember that the thought of you being ill breaks your mother's heart.

And the doctors who hurt you only seek to help you. You will soon meet one who will drive this point home and finally touch your heart with his stethoscope.

As for fighting yourself, it will only harden your heart.

(Perhaps the overall theme of being sixteen, then, is not the war - but the heart. You just don't see it that way yet.)

Have you heard that old cliché, that the things that happen to you now won't matter in ten years? That all those seemingly insurmountable obstacles will soon be inconsequential?

Nothing is inconsequential. In this life, in this childhood, in this adolescence, in this year - from the pre-calculus tests you'll ace to the kidney function tests you'll fail; from the worn path you've created on the linoleum floor between the bathroom and the refrigerator in your endless cyclical quest to satiate your thirst and empty your bladder to the bed where you spend so much of your time these days; from the candy, sodas, and sweets you've never tasted to the French onion soup at Mimi's Café that you devour to answer your body's cry for more salt to replace what it's losing; from the strangers who judge your height to mean that you are younger than you are to the friends who know nothing of cystinosis owing to your own conviction that you are normal - there are no small things.

Everything is shaping you into who you are and into who you will be. Even your act of ignoring it all is slowly molding the person I know so well.

You live a double life: you can go from high school cheerleader eyeing the football players in one instant to hospital patient fighting for her life in the next. But neither of these are accurate descriptions of who you are.

At biennial cystinosis gatherings, you shut yourself off to closeness with others. You learned a long time ago that just when you build a friendship with someone, she might not be around for the next conference. Though you don't do it consciously, you smile for photo ops and then turn your head from those who remind you of who you are: a temporary, mortal being.

But someday you will learn that all things, ephemeral or enduring, should be cherished for what they are while we have them. And relationships live on in your heart long after a person has passed away; there are also huge, happy reunions awaiting us in heaven. So in those moments when it seems possible amidst all the obstructions to create a clearance for your heart, allow yourself to love, connect, feel.

I hesitate to share these things with you, because I am intimately familiar with where you're at and I know that I will only make you more obstinate. That's okay, too. I do not seek to make you somehow less cerebral and more emotionally aware of what you are going through. Perhaps your current denial is what you need. It is your therapy, and that is why you resent the words of doctors who would claim that you need to have yet another conversation with a social worker who wants you to talk about that which you have eliminated from your mind.

There is no need for me to change your present, my past. You have to walk through this valley, and you'll have to walk through one that is even lower, deeper, wider, lonelier. Like the mighty Colorado River created something beautiful when it carved the Grand Canyon, the turbulent waters of being sixteen will rush through you and deliver wholeness in the midst of the chasm. God will make sure you don't get carried away with the flood.

You'll make it. That life you visualize when you close your eyes? The one where you are no longer at war with the world around you? It is here. I am here, exactly like you know you will be. I'm not telling you anything you don't know. You'll find your place and realize that the battle is already won.



P.S. That boy who is currently breaking your heart into a million pieces? Let him. Have faith that eventually he will put the pieces back together.

P.P.S. You're going to stand atop Mt. Kilimanjaro one day, as well as the tallest mountain in the Lower 48 and a quite a few other gems. I'll leave you guessing whether or not there will be escalators to take you to the top, since I know you can't imagine getting up a mountain any other way.