Leaving the Nest

For the first time in over two years, I felt like I was making headway.

I finally had the energy to finish my correspondence courses—sketching animals and people from books, magazines, and the Sears catalog. This gave me the credit I needed to officially finish high school.

I 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 began steadily losing weight. I tried eating more, but my weight kept plummeting—along with my newly regained energy.

It felt like my life force was returning and fading at the same time. Even the slightest bit of exertion (like going to a yard sale or even laughing too hard) put me back in bed for days.

I dreaded telling my friends and family that I still wasn’t up for visiting. And if I did commit to anything, I worried myself sick about having to cancel or leave early, or most of all, getting stranded somewhere while feeling nauseous and miserable.

The outside world began to feel overwhelming and dangerous. Things I always enjoyed like going to the grocery store or holiday gatherings, sent me into full-blown panic attacks.

I doubled down on my positive affirmations. “All is well” and “This too shall pass” became my daily mantras, and I filled my journals with long proclamations about how strong, capable, and safe I was.

But saying it wasn’t enough. I needed to see for myself.

Leap of faith

Even though I was scared and still barely functioning, I knew deep down it was almost time to go. I felt like 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 listen.

As a trial run, I rented a family member’s camp about a mile down the road for the summer with my new friend, Ann from New York. Ann and I met through a pre-social media penpal program for kids diagnosed with CFS. Ever since our first letter, I knew we were meant to be friends. We shared the same interests in nutrition, natural medicine, and spirituality, and we both had an unshakable determination to heal.

And we both ate a LOT of vegetables.

Our camp refrigerator, packed to the hilt.

Ann and I spent the entire summer cooking, eating, sleeping, and sharing our dreams and aspirations. We didn’t venture far from our little camp on the river, but this experience showed me that I could take care of myself enough to live on my own.

As much as I wanted to be fully independent, I knew I couldn’t do it without a lot of help.

At the end of the summer, 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 September of 1994, I became the youngest resident of Freeman Forest apartments.

My rent was subsidized based on the $446/month I received through Social Security’s Supplemental Security Income (SSI). This wasn’t nearly enough to pay my bills and put food on the table, so I swallowed my false pride again and applied for food stamps. I spent my whole life watching my parents do anything to avoid government assistance, and now my entire future depended on it.

The government wasn’t the only thing I depended on. I still wasn’t up for driving or shopping, so my uberly generous mom drove over 200 miles three days a week to help me with groceries and take me to appointments. As hard as it was to accept, I couldn’t have done this without her.


My next-door neighbor, Carolyn, quickly became my adopted grandmother. She 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 kind offerings kept coming. It became a practice of learning how to politely decline 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 the foods I could digest with more gusto than ever.

Aside from taking one course at the University, my entire life revolved around cooking and eating. I tried to eat at least one new food every week, no matter how strange it sounded. I sprouted mung beans, marinated tofu, and baked flatbreads and whole grain casseroles.

Some foods became staples, while 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. But it wasn’t just what I ate that was important. I was also how.

Even though I lived alone, I arranged my food nicely on my plate as if I were preparing it for a good friend. I’d fold my napkin in a triangle and set out my favorite fork or chopsticks. Maybe 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.

Food became a way of giving myself the love and care I needed to heal.

Despite plenty of hearty food and good intentions, my weight continued to drop—now into the low 80s. I tried compensating with heaps of peanut butter (often a half-cup at a time), and I drank protein drinks between meals, but it just made me feel sick.

The gesture of self-love became desperate attempts to gain weight. I started seeing food as calories, fat, and carbohydrates, and I panicked if I didn’t get enough.

I cut my hair short so it wouldn’t overpower my face, and Mom bought me pants from the children’s department. I tried staying positive, but I was dreadfully self-conscious of my waiflike state. It didn’t help that others were constantly telling me that I was “too skinny” and that I needed to eat more.

I was literally wasting away, and I there was nothing I could do to stop it.

Or so I thought…

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14 Responses

  1. Sharon,

    The unfolding story of your journey is both painful to read, and yet so inspiring, since I know there is a happy ending ;) Having lost 30 lbs myself, at one point, from my already tall and lean frame, I can so relate to the fear and anxiety of not being able to eat and/or assimilate food due to digestive distress. So scary. I felt I looked like a skeleton and felt such shame to be seen by the world. The fact that you turned this around with self-care, by educating yourself, and through determination and perseverance, just keeps me in awe of you!!

    1. I feel you, Amy. There’s the fear and distress from feeling sick, and then there’s the pain of seeing ourselves as “less than” or unattractive (which can happen no matter what size we are). Tending to either of these things can be a life-long practice. At least it has been for me. And thank you, Amy. The awe is mutual.

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Hey there.

This post is part of a series called “Peeling the Onion” about my adventures healing from life-threatening digestive issues.

To view the full story, click here.