A Letter to the Person I Was Before Chronic Illness

Dear Emma circa February 2021,

A lot has happened since we’ve talked. I’m not sure I want to tell you everything you’re going to go through, as honestly it’s better to just go through it and keep on moving. (Like the Dora the Explorer quote: “you can’t go under it. You can’t go around it. So you’ve got to go through it!”)

As you go through it, I want to remind you of how strong you’ve been before, and how much stronger you are than you think. Idiopathic intracranial hypertension (IIH) seems impossibly hard, but hey, it’s July, and we’ve made it this far. What’s a little farther? Like Dory, we’ve got to “just keep swimming. Just keep swimming. Just keep swimming.” So swimming is what we shall do.

If I’m remembering correctly, one of my biggest fears was that all my friends were going to up and leave me at the first sign that I couldn’t always support them. I want to remind you friendship is a two way street, and you’ve got to give yourself friends more credit than that. They love you more than anything I can describe, and you feel the same about them. So lean into their support, instead of being so worried they would think you are weak. The strongest people are the ones who admit when they need help.

I want you to know that on the flip side, some of your other fears, like losing your job and pushing off the start of college, they do come true, but it’s not as terrible as you thought that would be. Of course, the grief and loss of what could’ve been is real, but you’re going to come to the conclusion that it’s the best decision you can make; for your health, and for you. Just because it was your original plan doesn’t make it the right one.

You are going to feel alone. You will feel like there’s no doctor who wants to treat you, no friend that can make time for you and no family that cares. Those moments usually come when you haven’t slept, haven’t eaten enough and need a shower, not when those things are true. You will (at a snails pace — we are still working on it) build a team who wants the best for you. They are going to do what it takes to get you functioning again. I believe that wholeheartedly —and so should you. Your friends, like you wanted to, have jobs. They will make time, it just takes time to get a break in their schedules. And waiting for those breaks are worth it — I promise. And you and I both know — after a good nights sleep — your family loves you to the moon and back. They would do anything they could to get you out of this mess, but since they can’t, they will love and support you through it. So remember that as creepy as it sounds, you are never truly alone.

So, past Emma, all this to say is that I can’t promise the next couple of months will be easy. I can promise you have the support to get you through and the strength to keep going even when it feels like you can’t. And hey — you graduate high school along the way — and that’s pretty cool if I do say so myself.

Best of luck to you,
With all my love,
Emma circa late June 2021