A healing process

When I was elementary school age, I wrote a letter to Santa on Christmas Eve wishing for my foot to be “normal.” I asked for that and only that because I wanted it so fiercely. I wrote this letter alone in my room and left it by the fireplace on Christmas Eve. I didn’t speak about it to my brothers or parents. This was my personal wish, and I didn’t really talk about my feet to other people at this age as I didn’t quite fully understand my differences yet myself. This was between me and Santa, anyway. I remember the intense feeling of hope, thinking that the magic of Santa Claus could be powerful enough to give me what I wanted. If he could get all the presents children wanted and deliver them all over the world in one night, why couldn’t he do this too? I didn’t even want presents if it meant I could have normal feet.

I remember waking up on Christmas morning, and the first thought that came to my mind was my one Christmas wish. Before doing anything, I checked my feet under the covers to see if my wish came true. When I saw the same two feet under those covers, my heart sank. This felt like my only shot. If Santa couldn’t grant me this wish, then who could? What else could I rely on to have normal feet for once?

I know this story sounds heartbreaking and you’re probably wondering why I’m sharing such a sad moment in a child’s life. To be honest, I only recently unlocked this memory from my childhood but felt the significance of it immediately. Looking back on it, it just felt like such a typical thing for me to wish for a normal body and not get that wish. When it didn’t come true, I didn’t dwell on it or cry about it or even talk about it to anyone. I was disappointed for sure, but maybe deep down I knew that that wish was never going to come true. Like well, figures. I think I knew the truth but didn’t want to face it. Because this was just my life. It always was, and it always would be. Maybe I just thought I would always be wishing for something I could never have.

Not having “normal” feet was a cause of stress for me from a very young age. I never wanted to walk barefoot or wear sandals that showed my bare feet, and when I had to at places like the pool or the beach, I was hyperaware of anyone staring at my feet and desperately tried to keep them hidden. When my friends loved going to waterparks or the public pool, I absolutely hated it. I didn’t want people to see my feet, and I didn’t have fun at those places because I was so anxious about other people seeing my feet and staring because they looked different. Even when I was older in high school, I fretted so much about the swimming and boating unit in gym class that I had my mom write me an excuse to get me out of completing that unit. The thought of being in a swimsuit around my classmates with my bare feet out in the open was absolutely unfathomable.

I remember growing up when the simple act of wearing my shoes was a source of anxiety for me when I was only able to wear one type. Knowing each day that I had to slip on my old white tennis shoes that I had no choice but to wear just gave me a deep sense of sadness. It felt so permanent, so set in stone. This would never change. I knew I would never be able to experience the variety of shoes girls my age could wear. No matter how cute or formal my outfit was, I always had to pair it with those old white tennis shoes and I hated that. The urge to hide my feet was almost natural for so much of my life.

I remember when I was a child and felt the many piercing stares from strangers on a day-to-day basis, always locked on my feet. I felt so ashamed, so embarrassed of the way I looked when people stared at me. It wore me down until what little self-confidence I had became miniscule.

I remember going to doctor appointment after doctor appointment and surgery after surgery growing up. Oftentimes when my team met with me, they would ask me if it was okay that their medical students come in to observe. Before I knew it, there were what felt like 20 people in my room observing me as my doctor examined me. I knew they were learning about my rare disease, but it still felt scary and a little embarrassing to have so many people in there while I was being poked and prodded at a young age.

What I don’t remember? I don’t remember my body before the scars. The two long scars on my bigger foot have been there since my foot surgeries in preschool, so long that it feels like I was born with those scars. I don’t remember what my bigger leg looked like before I got my two scars from both knee surgeries I had in fifth and seventh grade. I barely remember how my abdomen looked before getting the two big scars from two more surgeries in high school. These scars–from the 6 surgeries before I was 18 years old–have always felt like a part of my body as if I was born with them. Scars and surgeries always just felt normal to me.

Reflecting on this, I’ve realized how traumatic some of these experiences were and how much of a lasting impact they left on me. They eroded away any positive sense of self-image I had and caused me to have little self-esteem and poor body image for much of my life, though thankfully I’ve come back from a lot of that in my healing journey. I’ve always known my childhood years were the most difficult for me, but I’m now starting to realize the extent of that and how much they shaped me and my personality.

Now that I feel I’ve healed through a lot of those past experiences, I almost feel that I’ve diminished those experiences into thinking they weren’t as bad as I thought they were. But that’s simply not true. I am valid in thinking that those past experiences were extremely challenging and did impact me in ways that I am still healing from.

I did have a wonderful childhood filled with love, support, and mostly the usual activities of a child and teenager, for which I am eternally grateful. And that is what I have always focused on – the positive. But that isn’t to say that I didn’t also have negative experiences that had a lasting impact on my person and my life.

I feel like my healing process began when I started to feel more comfortable in my own body as a young adult, but now it feels like I’ve started a whole new part of my healing process after self-reflecting on how impactful my negative childhood experiences living with my rare disease were. While staying positive is an important part of anyone’s journey, I think I’ve tried to diminish the severity of these aspects of my childhood by trying to only focus on the positives. You know what? Sometimes things just suck, and we can say that, and we can feel that. I do recognize how heavy these experiences were and how hard it was for me to carry that weight with me through my most vulnerable stage in my life. It makes sense that I’ve always found that part of my life the most difficult out of any other stage in my life.

My intention in sharing this isn’t to scare anyone who might be in this stage or who has a child with this stage of life ahead of them. I just find it important to recognize that sometimes times are hard, and it’s okay to say that and acknowledge the feelings that come with that. Sometimes we have down days or feel sad, and we don’t always have to “look at the bright side” if we don’t want to. In all honesty, this journey is complicated and emotional and filled with ups and downs – let’s actually feel all the feelings that come with that, both the good and the bad.

Yes, since childhood I’ve felt more confident walking around with bare feet or sandals and have found more shoes that I’m comfortable in, but I still sometimes feel my stomach drop in shame if people look or stare at my feet.

As I’ve grown, I’ve felt more comfortable in my own skin and realized how little I care about rude strangers’ actions, but those actions and stares still get to me sometimes and probably always will. Now that I’ve been able to honestly acknowledge and say that, I’m no longer going to hold myself back in actually feeling my natural response to those situations.

While I’ve since come a long way in healing from all of this, I know I still have a ways to go. If only I could visit little Lindsay when she made that Christmas wish, give her a comforting hug, and tell her that nothing about her needs to change. But she would figure that out eventually.

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