Brianna’s Story

My name is Brianna Elizabeth meaning woman of strength by grace. My dad named me that because I was born exactly two months early. I wasn’t expected to survive, and my name was chosen while my dad was singing the James Taylor classic, “You’ve got a Friend” to me in the NICU in Quincy, Massachusetts. I love my name, and it’s a lot to live up to.

I was diagnosed with cerebral palsy when I was a year old. Cerebral palsy is caused by a lack of oxygen to the brain and is a direct result of my struggle to survive my birth.

I am the oldest child in my family and have a sister and a brother. It was really hard to watch my siblings participate in sports growing up, because I couldn’t do them. I often feel trapped in my body. It’s hard to explain what it feels like to have a body that simply won’t do what I want it to. I felt really alone when I went to my sibling’s sports games and would often imagine what it would be like to play with them.

When I was eight years old, I had surgery for my cerebral palsy that would allow me to do the things I had been missing out on. I was really scared at the prospect of having surgery, but my eight-year-old brain thought it would solve all of my problems. Having surgery was a really hard and traumatic experience for me. I developed what I now know is PTSD and intense anxiety. I had physical therapy at home for more than a year. I felt so much pressure to walk perfectly. The adults around me acted like I was an able-bodied person in training. I tried so hard every day. I thought that maybe if I tried hard enough, my disability would go away. It seemed like my worth as a person was measured by my ability to walk. I couldn’t let all of the people around me down. I had to hide my disability. I worked so hard in physical therapy and pushed down all my anxiety and fear and eventually left my mobility aids behind. I never felt good enough and often experienced panic attacks about my cerebral palsy returning.

It was around this time that I transferred schools. I had previously been in a self-contained special education class because of my disability. None of the teachers in my previous school taught me much of anything, because they assumed I couldn’t learn. I’m so grateful my mother managed to pull me out of my first school, and going to a new school in second grade and being behind academically was really hard. There were some great parts to that year though. I made my first real best friend, and I had a great teacher who helped me catch up. I also realized how much I love singing and I sang in a school play that year.

I had pretty much forgotten about my disability until fifth grade. I was singing in a rehearsal for the musical “Annie Get Your Gun,” when all of a sudden, the muscles in my legs became really rigid and I felt like if I moved them, I would fall. That’s a common experience for people with cerebral palsy. My brain doesn’t communicate with my legs very well. This often causes random and involuntary movements. I didn’t know this when I was eight, and I lived in constant fear of my body tensing up and me not being able to control it. I was struck with the realization that my cerebral palsy didn’t really go away and that the surgery didn’t work quite like I had hoped. I tried so hard to hide my struggle, which led to difficulties with appetite, due to my intense anxiety.

I went into sixth grade and was bullied by my peers for the first time. It was also the first time I wasn’t the smallest girl in my class. I felt a deep sense of failure, because I was no longer the smallest. People were mean to me, and I no longer had being the thinnest to fall back on. I was coping with everything okay until one day, a popular football player ran into me on the playground knocking me down and causing a concussion. Everyone said it was an accident, but it wasn’t. I could tell by the way he looked at me, just before I fell. My mom picked me up from school and after a visit to the doctor, took me to get ice cream. I struggled to eat it and decided I wanted to be the smallest girl in school again, because that is all I felt I had.

My anxious lack of appetite didn’t actually become an eating disorder until ninth grade when we started learning about calories in health class. I realized that I couldn’t control my cerebral palsy, but I could control my body size. This realization comforted me greatly. For the first time, I felt like my body actually belonged to me instead of being something that’s sole purpose was to cause me anxiety and fear. I finally found something that made me happy that I could be good at. My eating disorder was something I kept secret for many years. The people closest to me in my life didn’t notice, because I had so many excuses to explain away my behaviors.

People continued to bully me, and I felt more and more alone. I was told by many adults in my life that people just didn’t understand disability and that my peers reactions to my disabled body were “developmentally appropriate” and that I needed to show the people that bullied me relentlessly compassion. It is never okay to treat someone with a disability like a second-class citizen. I think so many people forget that people with disabilities have souls just like able bodied people. We have dreams and goals and want to have friends just like anyone else. I wish the kids at school remembered that when nobody let me sit with them at lunch.

Since I was told I couldn’t outwardly display my anger towards my classmates, that anger fueled my eating disorder instead. I thought that if I was thin enough people wouldn’t notice that I walked differently or maybe it just wouldn’t matter. If I could be pretty enough, nice enough, thin enough then maybe people would overlook my disability, so I became those things. In seventh grade, I started wearing makeup and spaghetti strap tank tops. Hair straighteners came out during that time and my previously frizzy hair became sleek. I also started making really good grades. Some people were still mean to me, but they respected my academic achievements and I felt good about myself.

I went to a new high school in tenth grade and that’s where I feel like I finally broke. The boys in my class really didn’t like my disability and frequently pushed me into lockers. I felt constantly unsafe, because I was. The psychologist my mom took me to recommended that I keep attending school, because she said socialization was good for kids with emotional problems. I know she didn’t realize the extent of the bullying that I faced and neither did my mom. I wish adults realized just how emotionally traumatizing and unsafe bullying can be. Socializing is amazing for people with mental health challenges, but this wasn’t socialization, it was a survivor game.

My younger brother did realize the extent of my struggles. One day a boy shoved my head into a locker. This was normal for me, so I just tried not to cry and continued walking to class. It turns out that my brother was just around the corner and saw the whole thing. So, as a freshman he started and won a fight with a senior. He got suspended from school which prompted a conversation with my parents. My brother and I didn’t attend school for the rest of the year.

I went to college the next year. I was really excited about it, because I looked at it as a new beginning. In many ways it was. The relentless bullying stopped, and I finally was able to live on my own. I didn’t mind my disability as much because it was no longer the center of my world. I made so many new friends and had a lot of fun. I even met my best friend Stephanie on the bus that transported us from the dorms to class. I couldn’t find a seat which made me anxious. She invited me to sit with her and then decided to have the whole bus scream sing the Shania Twain song “Man I feel like a Woman” to make me feel better. I had a lot of fun times like that with her throughout my time in school. Unfortunately, my eating disorder made my college experience really difficult though because it turns out, that eating disorders cannot just be switched off when a sufferer’s quality of life improves. I struggled most intensely during a time before eating disorder treatment of any kind was covered by insurance. So getting any sort of help on a college student budget wasn’t possible. My parents have never been helpful in my recovery at all for their own reasons which I have very limited understanding of.

Even though aspects of my college experience were hard especially with not being able to access support for recovery, I started doing a lot of research on eating disorders which I’m really proud of. In my research, I learned several really important things. I learned that eating disorders are genetic and people that struggle with anxiety like me are more likely to have them. I also did a survey on Facebook and learned that fifty percent of people with cerebral palsy struggle with food. Most importantly, I learned that people of any weight can struggle with any eating disorder. My best friend Stephanie struggled intensely. She lived in a larger body, so I started doing research on what is now known as “atypical” anorexia and learned that restrictive eating disorders occur in people of all sizes. This is common knowledge in the eating disorder community today but was really groundbreaking in 2005. Stephanie and I started a support group for eating disorders at school and made the first recovery community that I participated in. My friendship with her was one of the best things that ever happened to me and helped me so much. I loved my college experience, but I was really excited to graduate and work so that I could afford help for my eating disorder.

I remember so vividly the first time I walked into therapy. I met this therapist through the one singular recovery group my parents let me attend in high school. I remembered her, and after writing an essay on recovery to receive a sliding scale rate, I made an appointment. Working with her was different than any therapy that I had in the past, because we worked directly on my eating disorder. The experience was helpful, because for the first time, I felt like someone actually understood me. I continued to struggle though because outpatient therapy wasn’t enough for me, and it was all that I had access to. My therapist was not an eating disorder researcher by any means, and constantly told me that at least I wasn’t as sick as the other women in the support group I attended. I tried explaining to her that eating disorder severity isn’t based on weight, but she didn’t want to hear me. It was really hard at that time because my dietitian sided with my therapist because they were best friends. They refused to look at the research I had gathered and the surveys I made during college about body diversity and eating disorder prevalence. So, I felt stuck because like many clinicians at the time, they didn’t think it was possible that a twenty-two-year-old could know more than they did about anything, much less the subject they devoted their careers to. I really wanted to find a new team at that point. There weren’t other providers available though. So, I made the best out of the situation until the miracle happened.

The miracle happened slowly, but I had this feeling that something beautiful was going to happen from the start. My mom had just completed her master’s degree in organizational leadership. She’s a nurse and on a Tuesday afternoon in late September she received a message on LinkedIn about a nursing job in Denver, Colorado. She didn’t like her current job, so she called the recruiter. She wasn’t truly considering the job until one day she did.

I still can’t believe that I landed in snowy Denver with my parents in March of 2015. It was beautiful and peaceful, and I fell in love with the city instantly. The city also offered some of the best eating disorder treatment in the country.

My therapist there was amazing. She is so kind and insightful and knew just as much about eating disorders as I did. She helped me with many things, and she was the first therapist that I processed my struggles with cerebral palsy with. She really helped me come to terms with and accept being disabled in a way that I never had before.

The city of Denver is breathtaking and very accepting of all people. For the first time in my life, I could start a conversation with a stranger without immediately being questioned about my disability. I started going to yoga every day and met really great friends. I learned so much and accepted myself in ways I never imagined I could. While living in Denver, I started accepting my sexuality a little bit at a time. I’ve always known I am a lesbian. I never told anyone though, because as the younger generation says, I didn’t want to be “too extra.” I thought that with my disability and eating disorder that being gay would be too much especially for my very conservative parents. I didn’t tell my family I was gay at that point, but accepting myself was a really big step for me.

Everything was going really great for me with friends and recovery for a few years. One night, I had a very vivid dream that I was getting married to a woman in the mountains in Estes Park, and that my favorite yoga teacher, who is also an urban priestess, was marrying us. The wedding was attended by all my friends who loved and accepted me. I woke up and realized I couldn’t be a closeted queer person anymore. I felt really stuck and I relapsed into my eating disorder. My friends all wanted to support me and asked me what was wrong, but the thought of telling anyone about my sexuality in any detail was terrifying. I stayed really stuck until one day one of my friends changed that. I’m going to read a post I wrote in the recovery community about that experience.

My beautiful friend Maddy FaceTimed me on a sunny Thursday afternoon in late April. I smiled when her picture popped up on to my screen, and quickly clicked accept. I have always admired her for her authenticity and the way that she accepts herself and others and joyfully said “Hello!” But she was crying. “What’s wrong?” I said. “I have to eat something, before I can leave the hospital. Can you eat with me?”

I quickly grabbed a snack and as I contemplated eating it, I realized I couldn’t eat either. Maddy and I both struggled with eating disorders. I had been doing well for quite some time. I could blame my recent issues with eating on a relapse, but that just wasn’t what was really going on. Maddy urged me to eat first…but I couldn’t. I needed to say something, but doing so would force me to acknowledge it myself. But then again, we were both stuck not eating. I wasn’t sure I could do it. I also knew we both couldn’t be stuck with eating disorders forever.

My mind flashed back to a trip I took to South Carolina with my mom and sister. We got stuck in an actual hurricane on the beach one afternoon. I told my mom I couldn’t walk back to the condo because of my disability. She replied, “Sometimes, it doesn’t matter whether you think you can or you think you can’t you just have to.”

This was definitely like the hurricane but somehow worse. I did get out of the hurricane eventually, but unlike the hurricane, talking about this would alter my life permanently. It wouldn’t be temporary. I reminded myself that being stuck with an eating disorder is hard too. And we were both stuck not eating. That by any definition isn’t sustainable.

“I’m a lesbian,” I said to Maddy and started crying before I finished. “Good, welcome to my team” she said enthusiastically. She has always been a very out person, and although she’s struggled with people not accepting her, she’s never let it stop her from being true to herself.

I noticed that we both started eating. I was telling her how proud I am of her for always being so open and taking the big risks like being the only person that was openly in the LGBTQIA community in her high school. I told her that if she was that brave at fifteen, she could be brave now. We finished eating with tear-stained faces.

We are both recoverED today and open about our sexuality most of the time. Maddy continues to inspire me. We don’t have to go through anything alone. Everyone has resources that can be used to help other people. I don’t think we are supposed to have all the resources, because if we did, we wouldn’t need each other. I’m really glad I need Maddy and that we were both able to free ourselves.

Everyone has at least two seconds of courage. That’s really all that it takes. Do something hard with a friend. Be honest about something. Finish the food. Do a thing that terrifies you. You aren’t alone.

My experience coming out to Maddy helped me tell other friends that I am a lesbian. I love that the universe has a way of helping us out of situations, when we feel really stuck.

Things got better really quickly after I started being more open about my sexuality and engaging in recovery again with my treatment team. My therapist went on maternity leave in December of 2018 after struggling with infertility for a long time. When she had her baby, I felt really inspired to give recovery a real try. I met an amazing dietitian that really helped me and my first eating disorder specialist medical doctor. My Dr had a really big impact on my life in many ways. We had a lot of conversations about recovery and why I kept getting stuck. She asked me about my struggle with cerebral palsy in the most compassionate way I’ve ever experienced. I told her that I really disliked one of the treatments for my cerebral palsy, because even though this treatment allowed me to walk independently, it negatively impacts my brain function, making the writing and research that I passionately love impossible. She helped me come up with a plan to stop this treatment, and then helped me pick out a walker to use instead. She was the first person that asked me what I wanted to do as far as medical treatment and didn’t automatically assume that walking without a mobility aid was better than using one. She helped me realize that I care deeply about research and finding effective treatment for eating disorders. Writing and doing research for me means using a mobility aid. For the first time, I felt like I had a say in my own life.

In the summer of 2019, Stephanie died of her eating disorder. I thought a lot about whether I was going to share this part of my story, but ultimately decided that it is important. Stephanie died of malnutrition. She lived in a larger body and because of her body size, clinicians refused to treat her for anorexia, and because of that, she’s not here. We shared the same terrible therapist in college. He once told her that she was faking her eating disorder and wasting his time. She never got over that comment. Stephanie struggled so much, and I’m certain that having that therapist’s voice in her head made things so much worse. I don’t have a best friend anymore because of weight stigma. Eating disorders can and do occur at any body size. I miss Stephanie so much, and I hope to honor her by continuing to advocate for better treatment for eating disorders.

Things were going well for me until March of 2020, when they stopped going well for everyone. Working in a grocery store during the pandemic was incredibly traumatic. I had to stick with it though because people need food to survive, and I needed money. During that time, the recovery community came together in a beautiful way and offered many meal support Instagram lives. I met so many wonderful people who saved my life during that time. One of the people who impacted me the most was Monika, the executive director of MEDA. She helped me so much. She’s the only human I’ve ever encountered who has significantly helped me with the PTSD symptoms I struggle with. Through her, I started going to the MEDA recovery groups. MEDA is an amazing community that has given me so much. I remember the e-mail I sent Monika asking to be a moderator for the new recovery community she was starting. I was certain she would say no. I thought I needed a lot more experience than I currently have to be a moderator. I’m so happy that she told me I could do it. I am so proud of all of the moderators and the whole community.

I’ve done really well in recovery since I decided to give it my best effort. I’ve learned so much about myself and the world, through the process. Overcoming a life-threatening eating disorder taught me so much. I’ve had to unpack a lot of things to survive. I’m going to share a summary of what I’ve learned now.

Ableism sucks and is a powerful and extremely destructive force in our world, just like diet culture. Our world will need to continue to radically change, while learning to value the contributions disabled people make to society to overcome it. It is never okay to make fun of someone with a disability or consider it “developmentally appropriate” for a child to make fun of another classmate. Disabled people do have souls and need a friend to sit with at lunch just like everyone else. Asking a child or an adult to handle their bullies with grace, and to accept that they might not have friends, because people “don’t understand” is inappropriate and traumatic. If you are part of the LGBTQIA community, any discrimination, you face is wrong. Nobody is ever “too extra.” People with disabilities are not able-bodied people in training. The amount of pushback I’ve received from people in my life regarding my decision to stop a treatment for my cerebral palsy, in order to persevere my brain function, is wild to me. Disabled people should not be encouraged by society to pursue walking independently or do anything that they struggle with, without first evaluating the cost of that decision. Walking is not everything. I’m still valuable even if I can’t do it well. I’m not your inspiration. My disability is the consequence of my traumatic birth that I almost didn’t survive. My sole purpose on this planet, is not to miraculously overcome my disability and help you feel better about your own less than ideal circumstances. You can do that yourself. I think some able-bodied people truly believe that disability causes a person to be unhappy. I know deep in my soul that this is false. Happiness comes from being able to live a life that brings you joy. Happiness certainly isn’t defined in ableism. For anyone in this community struggling with an eating disorder, disability or anything else, there is always hope and recovery is possible. It is also possible to live a beautiful life in the midst of struggle. Thank you so much to everyone in this community for allowing me to share my story. I love this community deeply. Thank you for everything you have blessed me with. Your story matters. Keep trying in recovery and in life and know that especially when it is scary, it is so life-giving and necessary to close one chapter and begin again. The most beautiful things are yet to come.