The truth about being Crohn’s-free is you are never truly free. The disease is lurking in the shadows at all times, waiting for the moment you let down your guard and inevitably weaken to the clutches of a horrible world. You will always worry and apprehend your stresses before letting them take over your subconscious. You will always look behind every corner and into every alleyway and duck before you need to, apprehending the monster that will surely block your path to happiness.
I live with that fear everyday. Regardless of the second Crohn’s remission of my lifetime (and hopefully the last), I will never shake that stone-cold chill in my bones when I remember the consequences of letting go, for even a moment, of the responsibility I hold to myself to keep the condition far away and out of my life. It’s the greatest responsibility I’ve ever had and the most frightening mission I’ve ever had to undertake. That feeling of being careful yet grateful every single day remains ingrained within you, and every moment you don’t feel pain and feel somewhat normal is a blessing.
An innocent, nauseous event or a random stabbing pain in my stomach jolts me to attention as I force myself to shake off the uneasy panic rising in my throat. It’s absolutely nothing, I think, just a human body being normal. How disappointing would it be to every single person in your life, including you, if you returned to the days of full, inexplicable darkness and self-abhorrence?
But what is normal, exactly? Is a remission-Crohn’s patient ever truly normal again?
Is normal the day you forget what the hospital walls were like when you briskly walked through them looking for an exit? Is normal the day you delete calendar doctor appointments because you no longer need to start your day with a daily dose of fleshed-out reality? Is normal the day you can finally write “N/A” under existing health conditions? Is normal the day you can close your eyes and no longer see a painful review of your most excruciating moment seeing the doctor write you another prescription to yet another unsolvable problem?
Normal is the day you can guarantee it won’t come back, no matter what you do. Normal is the day you can remember your past without the sounds of tense whispers and heavy, shallow breathing, then nothingness. Normal is the day you can hear about your medical history without feeling your skin lift up and roll within itself. Normal is the day you can brush away the tears that fall when you remember just how far you have come and how much further you forever will be from a relapse.
I wish I could say normal will be possible, but the truth is, you will never be or feel normal. However, you will never want to be. Because when you cross the street and get to the other side, you feel the breeze on your face and your hair in the wind, and you know this is life. You are living it. You survived what almost took away those basic, human experiences. You overcame the obstacle that almost stripped you of what it means to be truly alive. There are no fancy words or prescriptions in the world that could heal the heart that broke when you were first diagnosed, but now is a step towards fulfilling your desire of feigning a normal existence.
I know how exhilarating it feels to daydream of a better dream—the days you will no longer need to live and the feelings you will no longer need to feel. The emotions you suppressed for so long will pour out and your own mind can’t wrap around the prospect of Crohn’s no longer following you, like a mark on a hunted prey. You will no longer need to ask its permission to have a decent day.
Maybe I am forever afraid. Maybe I will be forever careful. Maybe I will always take a moment to remember how it felt to be unaware.
Maybe I will relapse one day, because that’s just how life goes—it goes into darkness before it ever shows you light.
But maybe I won’t relapse. Maybe you won’t either. Maybe you’ll live an entire full life without ever seeing the horrors of its treachery again.
I can’t imagine how exciting it must be to envision a world without a broken you.
Crohn’s never defined you. You thought for so long you were defined by the condition that broke and rebuilt you. Then you came to understand your condition never ever did that for you.
Your survival did.