With every passing week, even with every setback, I was slowly learning to navigate the world in a new way. I was seeking a new normal, but it felt anything but normal to me. My mother hadn’t been wrong all those years ago—people don’t want to hear about your illness, and I had some very good friends who drifted away. I tried to be as social as I could, with my low energy level. I would meet a friend for dinner or go to an event for a good cause, but there were always barriers—stark reminders that I was anything but “normal.” Either I would eat and get ill, or I would refuse to eat, and then everyone would ask me questions.
I remember one evening, sitting at the table at an event dinner. A gentleman at the table watched me for awhile. Then he said, “So, you’re one of those actresses who don’t eat? You’re all the same.”
“Actually, no,” I said. “I have celiac disease.”
“Oh, wow!” he said. “My wife just got diagnosed with that. For years, I thought she was just so frickin’ crazy.”
Lovely.
At another social dinner, I tried to speak discreetly to the waitress, but the table of people I was sitting with heard me. They all knew I had celiac disease, but they didn’t know what that meant. I remember one woman saying, “Jennifer! She said the chicken is fine! Just take the breading off! It’s not such a big deal!”
That made me feel really awful. I tried to explain, but then I realized it wouldn’t help. (Funnily enough, I recently heard that that particular person just got diagnosed with celiac disease. She’ll soon realize why breading on the chicken is a big deal, even if you wipe it off with your napkin.)
Then a friend of mine, whom I’ve known for twenty years, invited me to her house in the Hamptons. I began to travel out there on the weekends with Frankie Beans and Betty Boop and a bag of gluten-free food in the backseat. It took two or three Xanax and a stern talking-to-myself just to get there. I was still dealing with extreme exhaustion, compounded by the antidepressant, and although the panic attacks were less extreme, they always bubbled just beneath the surface. I spent maybe a month of the summer at my friend’s house, going back and forth, and it was enjoyable and relaxing to sit by the beach and have a few laughs with friends.
But it was difficult, too. This particular friend of mine is a great friend to me, but she really doesn’t understand celiac disease. She is a “pick yourself up and dust yourself off and move on” kind of person, and that’s a wonderful thing for her, but I felt as though she was frustrated with me. She tried to hide it, but I could see it. I couldn’t stay up late and drink with everyone. I couldn’t join in what they ate. I couldn’t go to restaurants. I had to cook my own food. I guess I seemed like a party pooper, and that’s how I felt, even though I kept reminding myself that I was just trying to keep myself alive.
I’m sure nobody meant to be cruel, but I was an alien in a strange world. I often made excuses for myself. It got to be that I would say anything to get out of a social event, just so I didn’t have to say I was ill. And then, one day, on the beach in the Hamptons, I met a guy.
IT WAS NO time for me to be getting into a relationship. Brian was as lost as I was at that moment in his life, but we began a fast and furious relationship. He was a nice, simple person and he was company for me more than anything else, during a time when I was so, so lonely, sad, and scared in this strange new world. I wasn’t able to work during this time, and he wasn’t working, either. My money was dwindling, dwindling down…and then I turned around and found out I was pregnant.
I was beyond frightened. We had been together maybe four or five months at this point, and as soon as I took that little boxed test, my first thought was: I can’t even get enough nutrients to keep myself healthy. How is this body supposed to nourish a child? I didn’t even want to think about the money situation, or the prospect of putting this into a relationship that didn’t really seem to have much of a future.
But I’ve always believed things happen for a reason. I’ve had to believe this because it was the only way to make sense of the many, many things in my life that didn’t make sense. I have faith that the universe knows what it’s doing, so I thought that maybe this was my road. Maybe this was a blessing.
But pregnancy was brutal on my body. I felt extremely ill. I made an appointment with the gynecologist and she confirmed the pregnancy with a blood test. They did an ultrasound and showed me a picture of this little tiny spot in my uterus. I sat down with the doctor.
“Look, I have celiac disease. I’m very ill. How am I going to do this?”
“First and foremost,” she said, businesslike, “You’re going to have to get off the antidepressant and all your anti-anxiety meds.”
Um…
“You’re not understanding me,” I said. “I can barely function even with that stuff. My nervous system is completely shot. There is no possible way I can go without those.”
“You’ll have to,” she said. “They cause birth defects. Take folic acid.”
I looked at that ultrasound picture every day, trying to focus on it to get through the hell I was feeling, being off my medication. I’d never been one to want children, particularly. I didn’t dislike them, but it just hadn’t ever been my goal. Growing up to have a family and children and a white picket fence? That wasn’t my ideal. I wanted to be an artist and travel the world and live in Italy. Dogs were great, but a child? The whole idea shocked me to the core, but I kept reminding myself that maybe this was meant to be.
All this happened over Thanksgiving, my absolute favorite holiday. But this was my first Thanksgiving knowing I had celiac disease. There were so many things I couldn’t risk eating, and the pregnancy was making me sick as a dog anyway, so I decided to skip it. My sister was making the dinner, but even though she had her own gluten issues, she wanted to make a traditional dinner for her children. I couldn’t stand to sit there and see all the food and be there with everyone and not participate, so I stayed home and made a gluten-free version of Thanksgiving dinner for Brian and myself. It was a melancholy day, and I missed having that treasured holiday with my family. When Christmas came, I felt so sick, I spent the whole day in bed. It was the blackest holiday season I’d ever experienced.
After Christmas, I was still barely functioning without my meds, so I decided to get a second opinion about whether I could take something to stabilize me a bit. I went to another doctor, and they did another ultrasound. The doctor came into the room looking concerned.
“I’m sorry to tell you this, but you’re not pregnant.”
“I’m sorry?” I said.
She explained what had happened in a technical way I didn’t totally understand, but the gist of it was that the sack had formed, but there was no fertilized egg inside. Something had gotten started, and then it had stopped.
“This could be due to your celiac disease,” she said. “There is a high risk of infertility.”
Nobody had ever told me that, either.
When I told Brian what had happened, that ultimately led to the end of our relationship. A few days later, my parents took me to get a D&C at the hospital.
IN THE WAITING room, I filled out all the usual information on the forms: name, previous history, all that stuff. Then I came to a big box that said: Autoimmune Disease. The choices, with check boxes were: multiple sclerosis, lupus, HIV, rheumatoid arthritis, and a bunch of others. The autoimmune disease they didn’t have on the list was celiac disease. I asked the nurse for a red marker and I wrote CELIAC DISEASE in big red letters across the whole box. Then I circled it. Then I underlined it, for good measure. You couldn’t miss it.
I gave the form to the nurse and we rolled into an archaic-looking operating room. They put me under, and the doctors who do such things did what they had to do.
I woke up later in a recovery area. When I opened my eyes, I saw a middle-aged nurse, maybe fifty years old.
“Can you hear me?” she asked, peering down at me.
“Yes.”
“I want you to start some fluids and have some food.”
She handed me a tray. On it were saltine crackers, a cup of Jell-o, and a package of juice. I looked at her, and even in my groggy state, I thought about the form I’d filled out, and the big red letters.
“I have celiac disease,” I said. “I can’t eat this.”
She looked right back at me, as if I were some kind of troublemaker. “You have what?”
I thought maybe, in my post-anesthesia state, I wasn’t speaking clearly. I cleared my throat. “I. Have. Celiac. Disease.”
“I’m sorry, I don’t know what you’re saying,” she said. “You have what disease?”
Oh, for God’s sake. “Celiac disease!” I practically shouted.
She looked at me blankly. “What’s that?”
Are you kidding me? I’m in a New York City hospital and they don’t know what celiac disease is? I closed my eyes. I didn’t have the energy to explain. I shouldn’t have to explain. I wanted to go to sleep for a week. “I don’t want anything, thank you.”
“You have to eat,” she insisted.
I opened my eyes again. “Ma’am, I told you that I have celiac disease, and you’re telling me that you don’t know what that is. But I am telling you that it means I absolutely cannot eat the food you are giving me.”
She squinted at me. “I’ve been a nurse for fifty years and I’ve never heard of that,” she said. By her tone, I could tell that what she was really saying was, “You’re crazy.” I just shook my head. “I’m not going to eat anything. I’ll have water,” I said. Then I lay there in that bed and cried—for how misunderstood I was, for everything I’d lost, for how alone I felt, even for the child that I never wanted, that apparently never even existed—and that probably never would.
IT BECAME A year of healing on every level. I was still trying desperately to find ways to feel normal, but they were few and far between. One afternoon, I was in the kitchen, making myself a salad and chewing on carrots. Plain carrots. I was disgusted by them, but I was hungry and I wasn’t sure what else to eat. I was feeling depressed. If there was ever an appropriate time for comfort food, now was definitely it.
As I crunched on those carrots, I thought about all the foods I’d had to leave behind—foods that had always brought me so much joy. The zeppolis at the Italian street fair in Brooklyn. The sleeves of Oreos I snuck with my father. The pie at Thanksgiving, the cookies at Christmas. The comforting bowls of pasta and breakfast cereal. Even the bagels and Saltine crackers I used to eat to soothe my stomach, before I knew they were the very things making me worse. I missed them all and mourned them all, and everything else I’d lost—friendships and relationships and even my own identity, not to mention just feeling good in my own skin.
Then I looked down at that big bag of carrots, and a thought came to me. I remembered my aunt’s carrot cake, so famous and beloved at our family gatherings. I remembered how good it was, how grown-up I’d felt because I loved something that wasn’t chocolate, and how much I missed it—the spicy-sweet, moist cake and the cream cheese frosting.
And then I thought about that gluten-free baking class I took, and how much I’d learned. Carrots. Teff flour. Amaranth. Garbanzo. Xanthan gum. Baking, with all of these unknown flours and ingredients. I had always loved to bake, and it was a hobby I missed terribly, but could I actually make a cake from all these unfamiliar things? That day, I decided I’d had enough of plain carrots, so I went to the store to pick up those ingredients and answer that question for myself.
When I got home, my pups were following my every move. “I’m going to do this,” I told them, and I started grating carrots. I was going to make a carrot cake and it was going to be delicious and I was going to eat the whole damn thing.
After a few hours of experimenting, and getting flour all over the kitchen, my clothes, and the pups, there it was—a carrot cake. Of sorts.
It wasn’t the carrot cake I make now, and it wasn’t exactly like my aunt’s carrot cake, but it was a carrot cake. It was a real carrot cake. When it came out of the oven smelling fragrant and spicy and warm, I screamed and danced around my kitchen with the pups, like an idiot. I was so happy in that moment that I had found some little bit of normalcy. I wanted some cake, so I baked one. I baked a cake! And it wasn’t just normalcy. It was control—a tiny piece of control over this absolute, uncontrollable disease that was still kicking my ass. Screw you, celiac disease! I’m having cake!
I had my cake, and I ate it, too. Over the next few days, I ate the entire cake. And I felt normal. And I was thrilled.
And that’s when my life started over.