This is a place of encouragement, a place to discuss body image, insecurities, self-esteem, and everything under the umbrella of fighting self-hate and finding self-love.
No matter what you look like, what color, what gender, sexual orientation, what size or however many "flaws", healthy, not healthy, working on it, abled, disabled, we are all human, we all deserve to be happy, we all deserve to love ourselves. With this blog you will see all kinds of REAL bodies, REAL people, REAL stories.
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Maintaining positive body image with disability, chronic illness, and chronic pain
Body positivity is especially difficult when your body is not a healthy one.
When you spend every moment fighting pain, struggling with basic tasks, and rearranging your life around your limitations, it can seem impossible to think of your body as anything but an enemy. Acceptance probably seems far-fetched, and love surely sounds like a joke; however, I’ve learned that it is crucial.
I spent the first eighteen months after my disabling accident desperately trying to cope with the changes in my body, and my initial focus was solely on recovery. I focused on research, diagnoses, treatment, and cures, and when none of the professionals could help me I slipped into despair. I had placed every single one of my metaphorical eggs into the “basket” of healing, and when I continued to decline I became completely lost.
It was not until I shifted my focus from healing my ailments to healing the relationship with my body that I found peace.
The journey is different for everyone, but I am going to share a few of the things I had success with along the way:
- Accept Your Body (in it’s current state, limitations and all!)
I am a very visual learner, and so for me this took a very concrete form. I created an art journal where I utilized many art therapy techniques which I learned in eating disorder recovery in my early twenties. I drew pictures of myself with exaggerated positives and negatives and I made collages about pain and disability. I wrote lists. Lists of things I was still physically capable of, lists of (reasonable) goals, lists of strengths, lists of positive things and things I love. I also wrote letters. Letters of love to my younger self, letters of apology to my disordered self, letters of recognition and appreciation to my current body.
For you this process may be less visible, but it is just as important. Unresolved conflict, grief, anger, and self-hatred cause internal turmoil and interfere with the goal of self-love. Attempt to identify where you have nagging, negative, emotions and figure out a way that works for you to resolve them.
- Accept Your Disability
This is similar to the first one, but different in that the goal is to focus on your limitations. As strange as that may sound, it is a vital step.
When I stopped obsessing over getting “better” I was able to make life so much more livable. Accepting the label of “disabled” actually opened many doors for me, because it enabled me to recognize my restrictions and then work around them to empower myself!
It is very difficult to sort our accommodations until you know acknowledge that you need them.
Instead of fighting your body, learn to listen to it and figure out what is needed to increase your quality of life.
This Valentine’s Day, love your sick and disabled body, and watch as it changes your entire world.
Part 2 will discuss beauty and hygiene, and Part 3 will go more into relationships. Let me know if you’d like me to add a topic!
Where to begin. I’ll start from the beginning, sparing the gross details. Also, THIS IS REALLY LONG AND OH GOD I’M SORRY
I was born with a lipoma and a superficial dimple on the base of my spine, a mild form of Spina Bifida. My doctors concluded that in addition to these maladies, which I still don’t fully understand I had what is called “Tethered Spinal Cord Syndrome”, a neurological condition where tissue wraps around the base of the spinal cord, preventing it from moving freely, and stretching during periods of growth, causing nerve damage. When I was 6 months old, I had a surgery to untether it, and after a few months, I had normal nerve function. The symptoms started to come back around age 7 (balance issues, back pain, among other more embarrassing things), so I had another surgery in the summer of 1999. This time, I had to relearn how to walk, and used a walker for about a month. Going into 2nd grade, I felt different and separated from the other girls (I went to an all girls school K-12), from my friends, like they didn’t understand who I was anymore. I had some residual nerve damage, so I had to quit ballet (my favorite), and sit out of gymnastics. Girls in my class wanted me to talk about it, but I didn’t want to. I chose who I wanted to tell using little notes.
By 5th grade, things were better. I had forgotten all about my difference. Middle school was eh, nothing interesting happened. The regular bullshit.
In October of my freshman year of high school, I found out I had to have another surgery for it, and that this time it would be a longer recovery process because I was older. By this point, I was surrounded by friends who supported me - the night before my surgery, I had a little get together with about 20 people, and served cheese-its and cherry garcia fro yo on the roof of my building. I was in the hospital for 1 week, including Thanksgiving, and then a rehabilitation center for 3 weeks. Friends came to visit very frequently, even those who I wasn’t very close with. I cried in front of my friend Anne for the first time when they took a drainage tube out of my back, and she held my hand. My roommates were all very different than I was - one was a girl from China who spoke no english, one was a girl from texas who had a hip replacement surgery, and another was a girl from the Bronx who had been shot. They were all between the ages of 18 and 20, and I was 14. It was a good experience to get along with people who I would not normally live with. At the time, my father said that a movie could be made about my experiences. Little did he know what the next 6 years would hold. (I really adamantly think that he’s right. But I’ll continue.)
I went back to school in February, and was able to catch up with the things I had missed over the previous 2 months or so. Things were okay, but I started gaining weight because my mobility had decreased. I couldn’t run through the streets of New York as I used to, but I was still somewhat active. I really liked my friends brother, a senior, and he really liked me, but as soon as he made that clear to me, I ran, because I was terrified. I still regret it.
In 10th grade, my friends had narrowed down to about 2 close ones, but the rest I was still very friendly with. I started having more back and leg pain, and numbness in the fall, and had a surgery in January for a herniated disc, and after it reherniated, another in April. After missing 4 months of school, I caught up with most of my classes, but my mobility had decreased again.
In my junior year (the first time around), the symptoms for the Tethered Spinal Cord started to come back, and exhausted after making up so much school in the previous two years, I decided to withdraw and come back the following year with the class below me. Before surgery, it had gotten to the point where I had to use a cane to walk. Almost all of my friends had flaked, so I was pretty much alone. In this midst of this, a boy I really liked, and had known forever, told someone that he was disgusted that I liked him because I was “obnoxious, rude, and unattractive.” That put a huge dent in my self esteem. I had surgery in July of 2009 (it took them that long to realize that the same thing was wrong) and was in the hospital for 2 weeks, then a rehab center for 4. This time around, the rehab center was one of the best experiences of my life. It was an adult rehab center, so I was the youngest, but I became very close with most of the staff and one patient in particular. He was previously an iron-man competitor, and was hit by a car while on his bike, and slammed into a tree. He was expected to be a quadriplegic for the rest of his life, but the doctors cooled his body directly after the accident, which prevented further nerve damage, although he had damage in his legs. You can read his story here: http://www.slowtwitch.com/Interview/The_wild_journey_of_John_Carson_1358.html . He was about 30, and I 17, but we played tricks on each other, ate lunch together, went to therapy together, and supported each other. He left using a walker, and has now gone back to doing triathalons. He is one of my heroes. I met several other inspiring people there, and learned a lot about myself and what I was capable of.
After 4 weeks, I left rehab using forearm crutches and leg braces, and went back to school. Those in my new grade thought I was still friends with the seniors, and the seniors thought I was friends with the juniors, so no one really talked to me. I became good friends with librarian, who is one of the most lovely people I’ve ever met. It was a lonely year, and from my further decreased mobility, I gained a lot more weight. In the meantime, I started going on webcam chat sites, and talking to skeevy guys to make me feel better about myself. They wanted to talk to me, they thought I was pretty, and they didn’t know about all my physical shit that was going on. As a result, I have a very hard time trusting guys, and need an extreme emotional connection to open up to someone.
I started out my senior year of high school in a wheelchair - I had an ulcer on the bottom of my foot that would not heal (by this point, I had no sensation in my legs, but could still move them). The ulcer became infected several times over the year, so I spent a week in the hospital here and there. During this time, I became severely depressed, feeling completely inadequate and inferior, and used this to attract friends through pity. It was a self-fulfilling prophecy; I didn’t want people to pity me, and expressed that to people, which in turn solidified my pity-case state. I depended on them for everything, one girl in particular, to fix me, to make me feel better about myself. At one point it got so bad, and I was so low, that they told the school, who said that if I didn’t get help, I couldn’t come back. I felt awful, unwanted, and like a problem. Over Christmas, I went to a mental hospital, where I met 2 girls I connected with, and became very close with my therapist. It was a nice break from reality. I sorted out why I was so dependent on this one friend in particular, who had stopped talking to me after I got drunk at her birthday party and was taking out my anger at everyone. In the midst of all of this, I had separated myself completely from my parents, who insisted I go to BYU, but they ended up letting me go to Sewanee, a liberal arts school in Tennessee by my cousins house. I finished my senior year weary, but glad to have finished high school.
Amidst this, I went through a sexuality crisis. I thought that maybe I was a lesbian, because “how could any boy like this”, “maybe a girl would like me”, shit like that. I started talking to this one girl, who ended up falling in love with me. We dated for about 3 months, but I was terrible to her, and also to myself. I did sexual things because I thought that maybe it would convince myself that I liked her, because I wanted to like her. The things she said about me were wonderful. I was her first, and she was my first. I broke things off, because I was going to college, but I realized that I was fooling myself the whole time. I still haven’t forgiven myself for it. It’s way more complicated than I am stating it, but if you’ve gotten this far, you deserve a medal, so I’m keeping it concise.
Sewanee. It was beautiful. My ulcer still hadn’t healed, and by this point I couldn’t walk distances anyways, so I begrudgingly went in my wheelchair. On my second day of classes, I met a boy, Charlie, who sat next to me in the hallway and introduced himself to me. I had never fully trusted someone so much upon an introduction. There was not a hint of condescension, pity, or humor in his voice. I could tell that he would be an important person, and he still is. Over last year, I fell for him completely, although we didn’t see each other much, but I knew he would always be there for me. He still is, and we talk more than ever, especially through his love crises, which unfortunately don’t include me. I’ve never met someone who has understood me so well, and who I am not afraid to give myself over to completely. He was one of the few good things to come out of my year there.
When I would go out to the frats in my wheelchair, it was miserable. If the frat WAS accessibly, I would always be in the way, people would spill beer on me, people would be so condescending, or stare, and one guy came up behind me and grabbed my boobs and left. One time, a guy tried to “Dance” with me, by pushing me and pulling me around and slamming me into people. One girl told me that guys would want me if it wasn’t for the wheelchair. Every time I went out, I would have to force myself, telling myself it would be better than the last time. Eventually I gave up, and just went to my cousins house every weekend, which was lovely. That’s when I decided to go to BYU, where there are no drunk guys and girls don’t have sex with someone in the same room as you when you’re trying to sleep, and I wouldn’t be the only person with a disability. At Sewanee, there was one guy who was blind, David, but I never spoke to him, because I didn’t want to be put in a token disabled person group, and because I’m a terrible person.
So, now, I’m at BYU, and had 3 other surgeries that I forgot to mention, and another one coming up in the next few weeks that I have to go home for. I use my wheelchair except when I’m around the house, and have chronic pain in my left knee, right leg, and lower back. I’m struggling to maintain my weight, but am trying harder to accept my body. It’s really easy to hate it. It hasn’t been very good to me. My sister always compares her weight to me, like she’s doing a good job if she’s skinnier than I am, and sometimes I justify my weight by saying that I’d look skinnier if my boobs were smaller. Sometimes, it really sucks that I’ll never be able to climb a tree, or run down a hill, or do ballet again. I have to remind myself that others have it worse, but at the same time, balance that with the fact that I don’t have the best deal either. A guy asked me out, and came over, and didn’t respect my personal space, but maybe I wouldn’t trust him enough even if that didn’t happen. I’ve been thinking about it, and I have to either disconnect myself emotionally completely, or be completely head over heels, in order to feel comfortable. It has proved to me that someone can, and will, find me beautiful, perhaps instantly, even with all of my body’s physical problems. Through all of this, music has been my one companion. I’d love to be a part of it for that reason alone, to give back, or melt into the strange material that has made everything bearable and sometimes beautiful. I’m still struggling, but the one thing that is pushing me forward, is that someday I’ll be able to use all this shit and make something incredible out of it, something that many can admire and appreciate and love.
This has been a jumbled personal post. Hey Jude just came on shuffle. How timely.
Michelle Lelwica (via internal-acceptance-movement)