An Affirmation: My Story is Valid

A few months ago, To Write Love On Her Arms wrote on their Tumblr that they were looking for writings to potentially be shared on their blog. As I hold this organization in a special place in my heart, I immediately responded to their request and sent them my story.

Here is how I introduced the submission:

My name is Mary Kate and on my better days I consider myself a warrior. I have grown up with anxiety that develops into depression. This especially got worse when I lost all my hair due to alopecia totalis. I once was near ending my life, but I kept living because I wanted my story to fuel a purpose in this world, to spread light.

Anyway, aside from the cliches, below is a draft of my story. I would love to write something specific to body or self image, but wanted to contact you in advance to ensure that I have the kind of story you are looking for.

Thank you.

Below is their response to my email. I have added their message to my collection of things I keep tucked away to refer to on my darkest days. They understood me. They found my story valid. They believed in me. My favorite organization believed in me. Words cannot describe how much their email means to me.

Hi Mary Kate,

Thank you so much for taking the time to write in and share a part of your story with us. We are so inspired by your words and bravery. Thank you for your patience in hearing back from us, we have a lot of blog submissions and take our time to read and respond to each one.

It is so great that when you posted your story on Facebook you got so much praise and support. It is wonderful to hear that you even had someone reach out to you and now you two have each other for support. We are firm believers in the power of people connecting with other people, we are so proud of you for speaking out.

We think your story is beautiful and are so thankful you shared it with us. Our blog posts are typically 700-900 words of text. We also will not post blogs with content that could be triggering to some of our readers. You are welcome to submit us a blog, we just want you to be aware that we unfortunately cannot post most of the blogs submitted to us. The blog, Why I Choose to Celebrate by our former Intern and now staff member Rebecca, may give you some ideas on what it looks like to write about a physical illness for us.

We are so glad to hear that as you chose to own your story, a weight began to lift off of your shoulders. We hope that you are continuing to open up to professionals about your thoughts and feelings. We firmly believe in the power of counseling and we hope your doctors are encouraging the same thing. We hear you when you say you thought of your problems as a burden. We want you to know that we as people are meant to take up space in this world. You are worthy of help and support and we hope you never forget that.

We think your line “Our outer shells will never depict the beautiful minds we possess inside of ourselves” is such beautiful text. It is so true that our beauty cannot be measured by continuously changing hair styles or makeup trends. Our beauty is inside our hearts, and Mary Kate, you have a heart of gold.

Thank you so much for taking the time to write in and share your story with us. We are honored you have allowed us to be a small part of your journey. While you may only consider yourself a warrior on your better days, we consider you a warrior everyday. Warriors do not give up, so when you are having those extra difficult days, know you are proving your warrior title even further. We believe in you and we see your unfading spark.

With Hope,
TWLOHA

 

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The Mind/Body Dialogues: Covers & Chapters

My body is the cover to my story: Dark under eye circles, thinness, a curly pixie cut.

My mind is each chapter: Anxiety, love, self-doubt, optimism, perfectionism.

My body is constantly telling me to stop.
“Slow down.” “Be happy.” “Breathe.” “Listen.” “Accept it.”
I ignore the warnings until I crumble in surrender to fatigue.

My mind is having multiple conversations every minute.
“You’re worthless.” “You’re worth it.” “You’re a burden.” “Your presence matters.” “You’re alone.” “You’re loved.” “You’re broken.” “You’re strong.”
I cannot ignore my mind, hence my crumbling and surrender.

My body is both my enemy and my security.
My pieces do not fit.
I am not a finished puzzle.

I’m supposed to be healed.
I’m supposed to be healthy.

My body is a vessel around the mess that is my mind.
It is an illusion of optimism and health.
It suppresses the realities of my thoughts.

My body is an anchor, but my mind is searching for air.

My mind needs to be heard.
It can no longer be silenced.
It aches for recognition.

My body is weak, but it is capable.
My mind is a mess, but it is capable.

My body has transformed dead roots into beautiful vines.
My mind has transformed death from a solution to a fear.

My mind and body were once the villains of my story
They have built the foundation
Upon which I have risen.

Where It All Started: My Story

“And it took cutting back the prettiest parts of myself to finally realize that this shell does not define me. For I am so much more than the flesh and bone that case the beautiful tragedies of my heart and mind.”-Becca Lee

Like a lot of people, I’ve always struggled to enjoy my appearance. However, I at least felt like I had control of it and could improve it with the help of a straightener and mascara. Midway through my freshmen year, this was no longer enough. The summer prior to college I discovered a few small bald spots on my scalp, but they were not noticeable and I told myself they’d solve themselves on their own. Although more spots formed over the following months, I continued to remain optimistic because I was able to cover them with a simple change in hairstyle.

In February 2015, I accepted defeat. My hair continued to fall out and hair alone could not cover it. I started seeing a dermatologist and wore a hairpiece as a safety net. My mental health was incredibly unstable. I have Anxiety, both over superficial stuff and deeper stuff, that worsened as I accepted defeat. I was hopeless, lost, depressed, and angry. At the time, I felt like I was being punished and my body was killing itself much like my brain was. I became the person I never wanted to be. I let my conditions foster hate within me and towards myself and push me to the bottom of rock bottom. I convinced myself that I was losing my hair as punishment for being an awful person, and thus accepted no sympathy. I spent nights staring blankly at the ceiling absolutely numb . I’ve never felt that numb before, and it’s really just indescribable. I had no hope for my future and was worried about what either I or life would do to myself. A year of college and I had no control of the wheel. I can honestly say this was probably the darkest time of my life.

The summer after freshmen year, I tried to take control. I spent a lot of time alone, recovering from the past 4 months of what felt like absolute hell. However, I still felt empty. I felt like an absolute waste of space. This feeling didn’t start going away until a few people realized I needed support and offered me some encouragement. I am forever thankful for those people almost two years later. Most of the hair I lost grew back and I was looking forward to a new start as a sophomore in college.

To my surprise, this new start was not what I hoped it to be. Within the first week of school, my hair started rapidly falling out. I’d spend every morning collecting piles of it and throwing it in the trash. I’d have to unclog the shower drain every time I showered. I’d wake up to it all over my pillow. I’d peel it off my neck at the end of the day. It got so bad that even just putting my hands through it would pull out a decent amount of hair. I felt disgusting. After all my progress, I lost control again, and was forced to watch the beautiful parts of me fall into my hands in less than a month.

My coping skill was repressing my emotions. I felt that this wasn’t as much of a problem as what other people around me were going through. I was ashamed and felt weak for being so upset about this, so I pretended it didn’t exist outside of the comforts of my dorm room. I carried the secret on my back and on top of it were piles of emotions I wouldn’t let myself feel. So I became numb to it, or at least, I told myself I was numb to it. If I walked outside to a blustery wind, I was worried that all I had lost would be visible. I would literally avoid my reflection in the mirror most days because I was always worried about what I could see.

I kept a brave face on for most people, but would go home and fall into a deep depression because I’d have time to think about the severity of my condition and the realities of it. Home was where I was forced to go when I couldn’t fight this battle alone, and thus all the repressed emotions would come back up quickly. I had to skip a few family get togethers because my anxiety about my appearance and ability to cope with possible comments was too much. I refused to let people help me, and kept my walls up.

I felt that I needed to deal with this on my own, and that I was a burden that didn’t deserve any help. If someone brought my walls down, I was honestly terrified to see them again because they had seen my vulnerability. I wouldn’t let anyone in because I was convinced they wouldn’t accept the real me. My wig and makeup became my mask that I desperately clung onto to protect my self esteem and keep my story hidden. I felt like my situation was not worth any worry considering all that was happening around me.

A part of my story that I don’t always realize is incredibly significant is that I’ve grown up with a twin sister with severe Autism. Most of my childhood was spent in waiting rooms with my mother for her various therapies and doctor’s appointments. Theoretically, I was the “healthy” child. The one who was in a regular classroom. The one who didn’t need much support. The caregiver. The one who was “okay.” That’s changed dramatically over the past few years. As a result, I struggle with the feeling of being a burden. I feel that this has caused my likelihood of putting my walls up and promising I’m okay rather than accepting help. I’m no longer a crier, which I think is unhealthy for myself as I bottle up my emotions rather than let them out.

Another semester ended, and although I was in a much better place socially, I carried a lot of regrets. Once again, I had time to dwell on everything going on in my life and all the mistakes I had made. I reached my breaking point during a visit on campus during Winter break, when I had one of the worst panic attacks I can remember. I didn’t sleep and felt like everything was flashing before my eyes. Every regret, every repressed emotion, every opportunity I didn’t take because I was constantly terrified; it came flooding back at once. The day following, if I thought about what triggered the panic attack it would nearly start again. I realized how fragile I was and realized I needed to get help. I changed my medications, which significantly lessened my fatigue to my surprise. I met with the counseling center weekly and tried to be more proactive in “healing.”

Shortly before returning to school for another semester, I suddenly felt the urge to share my story, so I did. I wrote a short article describing all I had been facing and put it on facebook. I worried I had made a mistake and that I looked like I was seeking pity. I now realize that this was not the case. I received a lot of praise for sharing my story, and even received a Facebook message from a girl I went to highschool with that also has alopecia. We check in with each other every once and awhile to see how things are going.

On what felt like a whim, I chose to own my story. A significant amount of weight was lifted off my shoulders, and progress was being made. Months later, I decided one night to let go of my crutch, my wig. As you can see, my hair is growing back thanks to the medication I am on. Letting go of my wig was not easy. I spent a few nights sleepless because I felt vulnerable. I struggled finding ways to feel attractive at first. Since most women my age do not have this kind of haircut, I feel as if I am a walking story. I have come very far, but I am not healed.

I’m forever paranoid about my appearance. My mom makes fun of me for using too many bobby pins to tame the mess that is this hair. I’m blessed with curls and healthy new hair, but it needs some work in the morning. That is what it is; but wind is still a trigger and I always have the anxiety in the back of my head that one day I’ll lose this hair again. However, I can look at myself in the mirror now, I no longer fear my appearance. I’ve learned to embrace myself, and it’s the best decision I’ve ever allowed myself to make. I still can convince myself that I’m too fragile, too broken, too much of a burden, and not deserving of love. Depressive disorder is now a part of my long list of medical complications in my doctor’s notes.

However, I watched the “beautiful” pieces of me literally fall into my hands as clumps of hair, and then used those same hands almost a year later to remove my wig for the last time. I’ve grown from someone that would avoid eye contact with the mirror into one who can walk to class without the fear that the wind would reveal all I had lost. I no longer fit the typical standard of beauty, and I never will, but I have never felt so at peace with myself as I do now. I want to share my story to remind anyone of the power of embracing our inner light and entering a life of self love. Our outer shells will never depict the beautiful minds we possess inside of ourselves. It will only be in using my story to heal others that I can come to the terms with what happened to me and how it ultimately changed me for the better, and I can fully accept a healing in myself.

The “spark” has become a symbol to me, similarly to how many people identify with the semi colon. When I was going through my darkest days, my mom always told me this was a transformation. I couldn’t believe her then, but as I watched my body destroy itself and then rebuild itself into something beautiful, I understood what she meant. To me, my inner self is my spark. It’s the part of me that has ignited into a light that I am finally ready to embrace. We all have that spark, we just have to believe that we have it.

A Strength that Compensates A Weakness

Despite all the mountains I struggle to love myself.
Loving others is easy, for their healing is my medicine.

While my visual glamor has diminished
My inner light has flourished.

My empathy is a spark
And my potential to love others is what will create a beacon.