For the first time in over 2 years, I felt like I was making headway.
I felt good enough to finish my art courses, and I finally got my high school diploma. I also started cooking my own meals, and I even left the house occasionally with Mom, but something still wasn’t right. Even though I was eating more food than I had in years, I kept losing weight, which was now dipping down into the 90s.
I tried eating even more, but my weight kept plummeting—along with my newly regained energy.
It was like my life force was returning and fading at the same time. Even the slightest bit of exertion (like laughing too hard or going to a yard sale) would put me back in bed for days. This stirred up dark memories of when I was too sick to sit up, and I was scared that I was heading back in that direction. I started to wonder if I was ever going to feel healthy and “normal” again.
I dreaded telling my friends and family that I still wasn’t up for visiting. And if I did commit to anything, I worried about what others would think if I had to cancel or leave early. The last thing I wanted was for everyone to see me as unreliable and flakey on top of being sickly and weak.
This triggered a kind of anxiety that I’d never felt before. Suddenly, the outside world seemed overwhelming and unsafe. Things I used to enjoy (like going to the store or getting together with family on a holiday), sent me into a full-blown panic attack. I started to feel different, separate, and like something was wrong with me—which led to even more anxiety.
I didn’t know what to do with the emotions moving through me, so I started writing about them in hopes of finding some insight and ease. I filled notebook after notebook with thoughts, feelings, dreams, and prayers. My journals became a source of solace and even guidance.
This made me want to learn more about the mental, emotional, and spiritual side of healing, so I joined a remote library program and read every self-help book I could get my hands on (which was a huge deal, as reading didn’t come easy for me). I couldn’t wait for the red zippered bag to come in the mail—delivering nuggets of wisdom from Bernie Siegel, Louise Hay, Andrew Weil, Deepak Chopra, and other pioneers in the field of holistic medicine.
Each book gave me another clue and even more hope that I could heal.
I was still barely functioning, but I knew in my bones it was almost time to go.
Even though I was scared (and Mom was even more so), my gut told me I needed to leave the comfort of my family’s home for this next stage of healing. I didn’t fully understand it, but I knew I had to trust.
Meanwhile, my lifelong dream of becoming a hairstylist was fading away and being replaced with something I never imagined. I wanted to go to college. I didn’t have the grades to get accepted into a university (more on that later), but the drive to learn about nutrition and health was so strong, I was willing to do anything to get there.
As much as I wanted to be fully independent, I knew I couldn’t do this without help—and a LOT of it.
After months of waffling, I applied for an apartment at an elderly and disabled housing development, about a mile from the University of Maine. At first, I didn’t want the stigma of being “disabled,” but then I realized the folks who lived there probably didn’t either. So in the fall of ’94, almost 3 years after I first got sick, I became the youngest resident ever to move into Freeman Forest apartments.
My rent was subsidized, based on the $446/month I received through SSI Disability (which I was darn lucky to qualify for). This wasn’t enough to pay my bills and put food on the table (especially the amount needed to sustain me), so I swallowed my false pride again and applied for food stamps. I spent my whole life watching my parents do ANYTHING to avoid receiving government assistance, and now my entire future depended on it.
The government wasn’t the only thing I depended on. My generous mom also drove 200 miles three days a week to help me with groceries and take me to appointments. We didn’t have Amazon Fresh or Uber back then, so as hard as it was to accept, I don’t think I could’ve done this without her.
I lived next door to a woman in her 80s named Caroline and her cat, Sookie. Caroline was always trying to “fatten me up” with beef stew and cream-laden dishes. I tried explaining that I had trouble digesting meat and dairy, but her offerings kept coming (almost every single day). It became a constant practice of learning how to politely refuse without rejecting her love and care—and figuring out what to do with the food when I didn’t have the heart to say no.
Meanwhile, I continued to explore what I could digest with more gusto than ever.
My entire day revolved around two things: cooking and eating. I challenged myself to try at least one new food every week, no matter how strange it sounded. I sprouted mung beans, marinated tofu, and baked whole-grain flatbreads, casseroles, and pot pies. I fermented kefir from raw goat milk and brewed my own kombucha.
Some foods became staples. Others were just for a time. Either way, I was slowly learning how to listen to my body and how to respond to what it was asking for.
I also began to learn how to nourish myself, beyond nutrition. Even though I lived alone, I tried to arrange my food nicely on my plate, as if I was making it for a good friend. I’d fold my napkin in a triangle and set out my favorite fork or chopsticks. Sometimes, I’d even light a candle. No matter what I ate (even if it was just a bowl of cereal), I’d hold it up to my chin, give thanks, and offer it to myself as a gift.
In a way, food became a vehicle for giving myself the love and care I needed to heal.
Despite all the hearty food and good intentions, my weight continued to drop—now into the low 80s. I chopped off my hair because it overpowered my thin face, and my pants now came from the children’s department.
I tried compensating with heaps of peanut butter (a half-cup or more at a time) and drank protein drinks between meals, but they only made me feel bloated and sick. I told myself it was going to be okay. This too shall pass. All was well. But my positive affirmations only went so far.
The truth is, I felt frustrated, scared, insecure, and very alone.