The Life Sentence

When I taught my younger sister how to read a clock, I sat her down with a massive clock poster with movable arms. I told her everything I knew, quizzed her, and when she had finally passed all of my tests, I not only felt proud, but more importantly excited for her that I had somehow let her in on the big world secret that was time. As children, time always felt unfair - we wanted more time to play, less time doing boring things, bedtime was too early, we wanted to sleep in later, we wanted to grow up faster. Learning to tell time was like learning the language that I’d misunderstood for so long, it gave me access to understanding the measurement of life.

There are very few things in life that last forever. Our shoe size changes, but is perhaps the same at some age onwards, our favorite food changes, our medications change, the place we call home changes, our jobs change, our cars change, our world changes. What is there in life that tangibly lasts forever, that we can hold in our hands and, despite our evolving life, stays the same?

Here’s the point: saying that IBD is chronic and lasts forever is a trick. We don’t really know what that means, we don’t really understand what forever means. It’s different than when we complain about waiting - “That took forever!” - it’s different than a slogan - “Stars and stripes forever!” Try as we may, we can’t really truthfully understand what it means.

A few days ago, I went outside to say hi to one of the little kids I babysit who lives up the street - we’ll call her Gracie. I told her I had something inside the house for her, and she walked with me, hand in hand with her Mom trailing behind, to get her little gift. My Mom had been clearing out my old things, and had come across a Barbie magnet set that had never been opened. I offered it to Gracie, who accepted it with big, glassy eyes, and then I was talking with her Mom. A couple of minutes later, Gracie - who had been running her three year old fingers around the border of the magnet package - looked at me and said, “Can I keep it forever?” Besides the obvious fact that it was adorable - my sister would groan if she knew I was retelling this story - it struck me as an interesting way to ask the question. It’s hard to picture it now, but one day little Gracie will be a teenager driving a car and listening to whoever the teenage idol will be in over a decade - and the furtherest thing from her mind will be if that old magnet set half-missing in her garage is really hers to keep forever. But today she’s three, and her forever is based on experience.

Maybe it’s like having a really, really big meal and thinking you’ll be full forever and will never want to eat again. Forever is rarely an accurate interpretation of now until the cows come home, it’s more like a measure of now until what-I-think-I’ll-feel-like when the cows come home.

We can change many things about our bodies and our lives. We can dye our hair, paint our nails, go to the gym, eat Oreos, and do pilates. But we can’t change that we have IBD. Sometimes it’s like how the classic lion tamer held a stool and a whip trying to subdue the lion back, the stool probably wasn’t very effective, but we try desperately to beat our disease back into a corner nonetheless. Even though we can’t really understand it, we will always have IBD - not to say we will always have symptoms or be sick or feel helpless or hopeless or frustrated.

Once upon a time, everyone thought the world was flat and that you’d just fall off if you went too far. No one thought that would change, they thought the world was forever flat and unforgiving. But the key is that the perception did change, and with it, experiences changed. Here’s the analogy: today, IBD is incurable and chronic and stigmatized, but that doesn’t mean that it will be that way tomorrow, or next month, or in three years. Our forever does not have to be humanity’s forever.

Here’s what our doctors didn’t tell us - IBD isn’t the only thing that’s chronic. We can be chronically determined, chronically optimistic, chronically fighting for our lives. And who knows, maybe one day not too far away, our chronic fight will win us a forever of health.

Jennie