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To the Girl Who Was Just Diagnosed With a Chronic Illness

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Dear You,

I know your feelings. You feel as though you’ve stepped into a world of unknowns and unfinished sentences. You may feel all alone, but know this: you are thought of often by people you thought didn’t even notice you. You will be thought of when you go for your first test, a CT scan. You will be thought of when your heart is racing as you watch the film go round and round. You will be thought of when your head is in your hands, wondering, how did I end up here?

There are no words I can say that will make you feel better at this point, nothing I can do that will make you feel at ease about your diagnosis. All you can see are stats and percentages that make it look like this will be an uphill battle. And it will be. But I’m here to tell you that you can win this battle, and have fun doing it.

Your fears were once my fears and my accomplishments can soon be yours. You don’t know it now, nor will you know it tomorrow, but you will feel whole again. That half a person you see in the mirror will find her other half. At this point, living until tomorrow becomes your only goal each and every day. Like your doctor says, you have to keep yourself alive and healthy enough until modern medicine catches up to you. The guilt you feel is going to swallow you up, but will gradually become lighter as you accomplish things doctors never thought you would, and as you gain understanding about how the preceding events happened and why.

Your numb walk through life, I’ve walked your path. I’ve felt your numbness, that numbness that has made you so cold, because you don’t want to be hurt again, don’t want your life ripped apart again by one more diagnosis. I can still feel it at times. Hearing the words, you have X illness and medicine hasn’t caught up to you yet, can be earth-shattering. But you will learn to make lemonade out of lemons. You must. But know this: your world, no matter how small it feels like it’s just gotten, how blurry your future seems even though before it was in perfect focus, is beautiful.

You will know your world is beautiful when your doctor is amazed by your recovery from a 30-day hospitalization that only took two days at home.

You will know your world is beautiful when you see the smiles on kids’ faces in the hospital when you do a toy drive for them for Christmas.

Your world will get infinitely bigger when you realize the power of forgiveness when you have to forgive the man who almost took your life, but at the same time saved it.

I know you’re scared.

Every statistic you read makes you more afraid of the unknown than you ever thought possible. Fifty percent of shunts don’t last more than two years. Sometimes in order to face the fear, you have to “go there.” You have to let yourself be afraid to realize that you have the strength to make it through. And sometimes knowing you have the strength to get through whatever it is; is all you need. You don’t need to go through the experience, but just knowing you will be able to get through it, should it ever happen, can allow you to feel like you at least have a little bit of control over your life, even when everything seems just one tiptoe too far. I know the burden of carrying a chronic illness sometimes feels unbearable. And the uncertainties make you feel like there’s no end to all of this effort you’re seemingly putting forth.

I know that at your doctor’s appointment where you got this heartbreaking diagnosis, suddenly that small hospital room feels even smaller, and suddenly the temperature in that room went up 20 degrees. You feel like the entire world can hear your heartbeat, when in reality it’s just you. You feel like as you walk through this illness, you’re always going to feel this alone, always going to feel like no one gets it except you. You’ve heard the words snowflake illness so many times in that one appointment, that you are unsure of what the words even mean at this point. But I’m here to tell you it will get better.

Words can’t help you right now. No number of hugs can help you right now. And God knows more facts definitely will not help. But remember this: as the clouds start to scatter and you can see the sun peeking through, life doesn’t end with diagnosis. A new life is just beginning, and you will learn to live with your new life, you will learn how to take the broken pieces of your old life and meld them into your new life, and while for now, you’re making them fit together with tons of tape and Band-Aids, soon you won’t need them. Soon your life will heal and you will have a scar, but that scar will represent what tried to beat you but failed.

This new life is hard and emotional with lots of ups and downs, but nevertheless beautiful, unique, and definitely wild. You only get one. So enjoy it.



Follow this journey on Ordinary Miracles.

Originally published: July 3, 2019
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