Yearly check-ins are a quiet reality when you live with a lifelong illness.
This year’s visit wasn’t much different. The same waiting. The same low-level anxiety. The same wondering whether the brain scan would show changes from the year before. You brace yourself for news before it even arrives.
And then came something I never expected to hear.
“You might not have to take forty four tablets a day anymore.”
Relief doesn’t even cover it. Ecstatic comes closer. Because those tablets are a daily reminder. A reminder that my brain works differently. A reminder I sometimes try to avoid by forgetting them on purpose, just to feel normal for a moment.
But hope, with illness, rarely comes without an asterisk.
“We have to be cautious,” the doctor said. “Your brain disease is rare. We don’t have the data. I don’t want you to be the patient we experiment with.”
And just like that, relief tangled itself with confusion. With sadness. With the possibility that forty four daily tablets might still be my reality.
It’s a strange emotional balance. Being grateful for the chance of change, while also sitting with uncertainty. Feeling lucky to be monitored, supported, looked after, while still wishing things were simpler, clearer, easier.
I don’t know what the next year will bring. I don’t know whether the number will change or stay the same. What I do know is that living with a lifelong illness teaches you how to hold multiple truths at once.
Gratitude and fear.
Hope and caution.
Relief and disappointment.
And above all, gratitude for the opportunity to keep checking in, even when the path isn’t certain.