I was standing on the platform for the 6 train on the Upper East Side of Manhattan, sipping my double latté – it was happening. Again.
My hair caught between my shoulder bag and my armpit as I spun around, shocked at the pain that ripped through me. Struggling, I unbuttoned my light summer jeans, strangely tight around the middle. I turned. Though I did everything in my power to get up the subway steps and into a nearby restaurant to relieve it, my cold, shaking body had to let go three steps from the top. The problem in a situation like that, I have since learned, is that walking makes it worse, and stopping gets you nowhere.
For the past ten years, almost half of my life so far, I had been struggling with both thyroid and Crohn’s disease. It started as a small lump that I found when I was sixteen and had grown to include excruciating stomach pain, tumultuous moods, high anxiety, and fatigue. I was in my twenties, but I felt like I was in my eighties. Frankly, I wasn’t much fun to be around. I was sad, sick and tired, pretty much all the time. But I hid it, like a secret, as deep as it would let me, because I wanted to be free and fun and sexy like my friends. Until the secret came bubbling to the surface and I couldn’t hide it anymore.
Now covered in a film that no one could mistake for anything else, I sprinted in shame to my gym, a place that had been my salvation for the last five years. I rushed into the shower with all my clothes on, peeled them off, pumped bright green body soap into the crotch of my jeans, and threw away my balled-up underwear in a naked dash from the scalding shower to my locker.
They had said this might happen. When the doctor first diagnosed my Crohn’s disease he had used the word “urgency” to describe one of the major symptoms.
“What does that mean?” I asked.
“Well, for some patients, not all, but some, it means that they have to go to the bathroom very quickly.”
I listened silently, quieted by disbelief.
“What happens to them?” I asked.
“Well, sometimes they don’t make it.”
To underscore his words, he handed me a pack of adult diapers saying, “Many of my patients like to carry one of these in their bags.”
The package of diapers was bulky and crinkled when I tried to stuff it into my oversized purse. My face burned with shame as I took to 54th Street with it poking out of the top. At the end of the block I took the diapers out and threw them into the trashcan. Urgency was not going to happen to me.
But I had been wrong. When I was finished, I sat on the cold metal bench with towels draped over every part of me, my jeans and tee shirt and bra draped over the bench. I caught a glimpse of myself in the mirror across from me. My hair was plastered against my face in wet ropes. My big eyes, the ones I sometimes got compliments on, were swollen into slits, the skin below them red and raw. How could I possibly live a normal life like this?
I should tell Nick it’s over, I thought. Nick and I had been together for seven years already. We were living “in sin” according to my jesting grandparents, in a small apartment in Downtown Brooklyn. I was an art teacher, part time, but it was becoming too hard to get to school every day so I was thinking of quitting. I had no idea how we would pay the rent without my miniscule income. Nick worked in urban design and made only a little bit more. But Nick was a dreamer, full of life and overflowing with the word yes. We had met in college and though we tried to break up for a while here and there we had found ourselves intertwined in each other’s lives and hearts much before it probably behooved us too. We were still so young. We’d barely lived yet.
And when I was feeling particularly bad, and there was no trace of youth left in me, I found myself thinking he really might be better off with out me. Let him find a woman who is healthy and strong, always ready for life, I’d think. Not one who has a new life-altering disease every five minutes.
At the same time I felt as low as possible about my life, I felt elated at having escaped the stomach pain that had overtaken me a half-hour earlier. It was blissful, this pause, like a welcome inhalation of normalcy.
A delicate young woman wearing a black, gym-staff tee shirt came over to me in the locker room.
“Are you okay?” she asked me.
I nodded, unable to speak. A rising ball of humiliation threatened to choke me, almost like the giant walnut within me.
“Do you want me to dry those for you?” she asked gently.
I sighed with gratitude, and she threw them on the top of her laundry basket. I nodded my thanks and sat in tiny white towels for the next forty-five minutes while a woman I didn’t know dried my stained clothes. She handed them to me in a CVS bag someone had left behind. I had no choice but to put them back on. I proceeded to walk home, seventy-three blocks and two avenues and one bridge, just so I wouldn’t have to get on the subway again.
When I walked in the front door, Nick was sitting on the couch by the window. I tucked my hair, now air-dried and frizzy, behind one ear.
“You didn’t answer your phone,” he said. His face screwed up with worry, like it tended to be. But there was something else there as well, a glimmer of anger, a shimmer of disappointment.
I sat down on the arm of the oversized chair, perched and peaked, still shaking from the experience and the long walk home.
“I can’t even talk about it.”
“Fran, what?” I couldn’t get over the shame to say all of the words I needed to say to him to explain what had just happened. Nick’s face went soft, pity replacing frustration.
“What they said might happen with Crohn’s just happened, and I was all the way on the Upper East Side.”
“I’m going to shower.”
Nick never liked to make a big deal of bad things. I think that may have been a mechanism to counteract my (possibly justifiable but always intense) exaggeration of my ailments, or maybe because he just never really knew how bad it was. There was a certain naiveté about Nick, always; like he was still the teenager I had met in college, like the world was as exciting for him as it was scary for me. I’m truly not sure he “got it” for a long time, just how sick I was. How every time I felt well I knew it was only a momentary reprieve. How living a day without pain was my first goal, and hiding the intense sadness I felt about this from anyone around me was the second.
The embarrassment from the day choked me, and I turned and headed to the shower. We had known each other for years, but as my body gave out, he had had to know me in completely new ways. He now knew every part of me, the sick parts particularly, the weak parts, the holes. It shamed me to know this.
“Remember, Gina’s coming over tonight.”
I remembered then, Nick’s friend from college was bringing some friends over for dinner. The plans were weeks old.
“Oh, Nick, I don’t know if I can.”
“I’ll take care of everything.”
He didn’t offer to cancel. He never did. I never blamed him for that. If he canceled every time I didn’t feel well he would never go out, and never see anyone. Like me. But at that moment, all I wanted was for him to understand how brutal the day had been, and to offer to hold some of that brutality for me.
I used to get mad at him for this. I used to cry that he couldn’t possibly understand me, or any of it. I used to blame him for a lot of things I felt about my inability married to his ability. My lack of luster compared to his lust for life. But it never lasted long. Because part of Nick’s charm is that he is incessantly optimistic. He may not relate to my struggle, but he’s in it with me. Even then he was. And though he didn’t want to wallow in it with me, and that may have been a youthful, slightly selfish decision to make at that moment, it also taught me a lot about how to put things into perspective; how to look at this part of my life as a piece of a bigger puzzle, one that Nick and I were going to figure out together.
I nodded, but I am not sure he saw it, because I was already shedding my clothes on my way into the bathroom.
I used every ounce of hot water in the building for my forty-minute shower. I came out in my clean dry sweats, dripping but cleansed, ready to take on the evening.
photo by http://www.dnainfo.com/
4 thoughts on “How It Started”
Thank you for writing this down and sharing.
Loved the voice in this text.
wow, you are an inspiration. I have some of that invisible disability… fibromyalgia, osteoarthritis, many injuries, surgeries, constant pain. I have just begun to blog out loud about stuff. Go on, sister.