In the beginning of 2018, I had my third (and hopefully last) brain / spine and neck surgery, and literally and figuratively confronted myself. I saw a picture that brought back this memory today, and would like to tell this story. I might have shared a piece of this story before, so forgive me if I have. I find that life goes by quickly, and I enjoy looking back and reflecting on the past to think about myself now and into the future.

I flew into New Hampshire with my Mom a few days after the New Year. We drove up to Dartmouth where a few of my surgeons resided still. It had been almost 15 years since the second surgery, and they welcomed me still with open arms. New Hampshire was beautiful - covered in snow, and quiet after the holiday. I enjoyed riding in the car with my Mom because we didn’t always have to talk - it was possible to just enjoy the peace and calm and one another’s company. As I do now, I found myself lost in the beauty around me, and in my own head, the perfect state to not have awareness of one’s body. I didn’t want that awareness, because I felt weak. I had been making slow recovery since graduating, but I was not well - slowly going back to being underweight, not sleeping, and trying to sqeeze positivety out of whatever I could find. I know my Mom felt it too. I remember I could see it in her eyes.

On these days, finding positive around me meant giving hugs to the gigantic stuffed dinosaur in the gift shop, picking out some snacks to bring home to my Dad, and posing my stuffed Pusheenasaurus around the hotel room in funny ways. It also meant making funny faces to make my Mom laugh in our hotel room, and a few crude jokes too (side note, the best one involved a curtain blowing very strategically on top of an AC unit that made a ghost variant of something I will not name - I got my Mom in hysterics for that one)! But deep down, I was scared. Having lived in warmer climates for over a decade, a return to the North East I found that everywhere was freezing. But I knew I had just this one more time. I was tired of having screws go into my head around the circumference that left holes in my hairline. I wanted it to be the last time the gigantic tree scar down the back of my neck was opened. All of this said, these details somehow didn’t bother me. Over a decade of shit happening makes you hard, or at least makes you tune out or just choose to ignore the bad things. I have a memory of lying in a warm bath of the hotel and just staring at my toes, and enjoying it. The light that reflected from the mirrors was bright white, and it made my eyes sparkle. It was an economy hotel in the middle of nowhere but it felt so fancy. I loved it. The avocados from the single grocery store nearby were a bit hard to eat, but they were enough.

It was the day before, and my Mom and I decided to explore a small town area around the hospital. I don’t remember which, but there was a coffee shop with some appropriate name (given the circumstances) like “Lucky” and a small yarn store. The store was glorious - I remember walking in, and seeing little tightly knit creatures and small action figures all over the place (there was an avocado)! My Mom was very carefully choosing some yarn to purchase for entertainment while I was under. I knew this was just a distraction, for the most part, because I doubt she would have been able to really enjoy knitting while being worried at the same time. But then, I stopped in my tracks. I looked up, and I saw myself.

It was a small, rectangular drawing of a girl with flowers on her head, with dangling earrings like I wore, and looking off to the side. She had a uni-brow, and a small upturned nose that mirrored the tip of mine. And the eyes? They were mine. The picture, in its entirety, is what I thought I might be if I were fully healthy. It might have been a variant of Frida Kahlo, but it had the strange elegance that I’ve always carried. What captured me most, however, wasn’t her features, but the look of subtle sadness to her gaze, which was completely disconnected from the viewer. I stopped in that shop and I just stared at her. In a world where I was losing sight of myself, the world was placing me directly in it. I had to travel many miles and randomly stumble into a yarn shop in a small town, but there I was.

I bought that picture, because I couldn’t leave her. It was both haunting and meaningful at the same time. This was the last of a handful of larger surgeries I had during graduate school, most of which I tried to hide from the world and try to survive, and during those times I often found it hard to imagine a future where I was fully a part of the world. I either lived in a bubble, or had such severe limitations to what I could do, I wondered why should I bother. Strangely enough, those limitations have given me superpowers, because I find that I can not just survive, but thrive with very little. You’d think you’d wake up from a major surgery and be ornery and in pain but me? I was more happy that I could pretend to be ET for a few days.

But being silly aside, these events have given me perspective about the fragility of it all, and how everything that we take for granted - waking up and feeling OK, feeling strong and healthy, or just walking, could go away, and permanently. It’s why, during this pandemic, I don’t take any risks. Sometimes we have to lose the basics that you take for granted, whether that be our health or people in our lives, to appreciate them fully. If we are lucky, we can get them back, as I did with my health. And in case you are wondering, aside from having an immensely powerful immune system that might do more damage first, and losing the strength of my lungs and heart to run, if I ever needed to be on a ventilator, or intubated? It probably wouldn’t work.

In medical terms they really do call it a difficult airway. You can read the sign to see what that means, which was posted in multiple places around my room and on the door. My upper spine is fused, and has been that way for over half my life. It hugely changed my appearance and took away all mobility from left to right, which now I only have due to incremental, tiny movements of the other vertebrae down my spine. It brought me great sadness to lose the person that I had grown up seeing, because I used to feel beautiful and elegant, and after I was fused in a permanent position that removed a lot of the outline of my face. At the same time it was also a blessing because I learned to value myself based on qualities that were everything except for physical appearance.

But the long term implications for future emergencies were not great. The only way to intubate me is optically, and while awake, which means a small camera diving into my lungs bringing down the tube while I watch on the screen and cooperate. The only way to do it is with my assistance, which means I need to be conscious. Side note - probably not many people have seen the insides of their bronchioles . They are very cool! The one case in college where there was an emergency and they had to intubate me (still breathing on my own thankfully) it took them three hours, and in that time a large piece of an essential organ was dying. I woke up (thankfully) a few days later completely intubated, and when they painfully removed all the tubes, they came with old blood and immense swelling in my mouth all the way down my throat. It was terrible. My point here is that many people take it for granted that if something happens to them where they might go unconscious, the standard medical practices will work. They won’t work for me, and so I don’t take risks that might lead to that outcome. I’m supposed to wear a medical bracelet or necklace but I don’t. The last part of this story is the most beautiful memory of the entire thing, my Mom meeting my Dad at the airport.

I had always hoped that someone would love me that much, but not everyone is so lucky. But now that I’m older, I have a different perspective. Love is not wanting something or someone for yourself - it is completely unselfish. The entirely of it manifests in our head, and that means that you can love someone without having them, in the traditional or expected sense that we are shown in movies. It is finding a person in the world that, maybe for the first time, you always place them before yourself. It is seeing how beautiful or handsome they are, not because they match a model of beauty, but because they are them. It means seeing them in sickness and feeling nothing but affection and warmth. You will do just about anything for their happiness, whether that be longer term, hard work, or a fleeting moment of laughter. You want to see them strong and successful, and when they smile? You live for that. You want to sit in their silence, to hear their voice, and would be happy to just have their company. It is getting peeks at their vulnerability and loving them more, supporting them when you can, and wishing you could when you cannot. It is being willing, at the drop of a hat, to climb mountains or do the impossible if that’s what they need. This is how I experience love. It’s the most beautiful thing, and I’ll cherish it for however many years it endures. We cannot control the people that love us back, nor can we control the choices that they make, but we can take the love that we have, like an intensity burning inside of us, and let it thrive and come out as joy. And the scars that we carry with us make us stronger, whether they are once, twice, or many times the charm. I’ve certainly lost count. It’s been just over six years since this story, and more than half a life time ago since it all started. I can sometimes lose perspective about things, as we all do, but remembering how grateful I am for my life, health, and ability to find joy, is what brings balance.

Suggested Citation:
Sochat, Vanessa. "Seeing Yourself." @vsoch (blog), 15 Apr 2024, (accessed 12 Jun 24).