On my story

Storytime.

This is the most difficult thing I have ever written. It feels gigantically important.

Warning: it’s by far my longest post. It takes me about half an hour to read.

Also, the side notes I wrote a while back still very much apply.

So, where to start… I guess at the beginning there were my parents. When they met in their late twenties, they both thought they didn’t want children. They both had horrible childhoods, something they bonded over. But their love changed their minds, and so they decided to start a family and have a baby. Me.

Can one ever describe how they were in their first years? I look at pictures, I listen to anecdotes, and from that I piece together the kid that I think I was. I would never sit straight in high chairs, always had a leg swinging on the side. My parents took me to all kinds of places children don’t usually get to go. I remember being aware of music, and I imagine I must have been highly sensitive from the get-go.

It’s extremely difficult to find the words to talk about what happened next, which makes what happened before seem irrelevant. When I was three years old, my sister was born. Everything seemed normal until her birth, when it became clear that, well, she wasn’t normal. No one knew exactly what she had until she was seven years old, when by chance one of her doctors saw a case with a kid that looked just like her. Only then did we get the actual diagnosis of her syndrome. Like with Down syndrome, except it’s a different rarer syndrome, a spontaneous mutation on one specific gene created a ripple of consequences all over her development.

I’m used to describing my sister’s story in a detached clinical tone, because I’ve learned that sick children is one of the most heart wrenching subject. The events of her early life were very dramatic. She spent the first six months of her life in intensive care. She almost died, couldn’t eat on her own, and had a bunch of other problems. When she finally came home, she had to be forced fed at night. So our room became the ICU. It took two adults to set up, my parents having to become expert nurses overnight. She had to be restrained with special orthotics so she wouldn’t pull on the tube that went down her nose to her stomach. Later she would make herself vomit to have it come out. Can’t reason with a baby that feels tortured by what is keeping her alive. Every single night, all night long. For three years.

I remember nothing from this time, I blanked it all out. If it isn’t clear already, this is the first source of my post-traumatic stress disorder, though I didn’t understand that until a few years ago. I was told that after my sister was hospitalized, I became the perfect child. I don’t know what that means exactly, but I do know that my subsequent struggles are related. In the work that I have done on myself since, I’ve uncovered some of the agreements I made with myself back then. One of them was, if my sister dies, so will I. Completely irrational of course, but it’s the kind of thing a three year old would come up with. Bargaining with magical thinking. I use a lot of psych jargon by now, but it all boils down to one thing. What was happening was overwhelming and I did not have the resources to make sense of it.

Those early years were the worse, but that’s not to say that the following ones were easy. Her physical, intellectual and emotional health were, and still are, a rollercoaster of challenges. She’s doing pretty great these days, but it’s been a hard road getting there. And as for normal, she never was nor ever will be. But normal is overrated, and I can say that from actual experience. My parents and I became a tight knit team around her, bonding over everything she had to overcome. As can be imagined, I got to grow up too fast and never again was quite the normal kid either.

How to continue… I guess school years. That’s a tale of extremes, highly tainted with the misunderstood context of what was happening to me through what was happening to my sister. At first I went to my neighborhood school, which turned out to be quite rough. I always had a lot of ease with academics, something that was due to my parents encouragements and to being kind of gifted. During the three years that I was there, I remained the kid no one could relate to. I never once made a friend. I was either bullied or ignored. At times I was bullied by parents. I was too different to ever fit in. Teachers had no idea what to do with me, and as the weird quiet ultra mature kid, I certainly wasn’t their priority.

The principal ended up summoning my parents to plead with them to take me to a different school. That’s when my fortune turned around. Because of my sister, I got sibling privilege to attend an alternative school. It had barely a hundred kids, the classes were integrated with different ages and different disabilities. It was based on a self taught, project-based pedagogy. I can honestly say that this school changed my life. I immediately made a bunch of friends, my family life became integrated with my school life, and I found my voice. We would make our own schedules and create our own projects. We never had normal exams, but instead had evaluations that focused on how we felt. How do you feel about yourself? Oh my god. Those questions opened up my soul. I got to know me, everyone got to know me, and I felt like I belonged.

Then this dream time, which is still the model for what I believe life can be, ended. Sadly, there were no alternative options in my city for the next grades up. So I got hit by puberty at the same time as I re-entered the nightmare of conventional schooling. I switched schools four times in five years, and never found continuity in any community. That’s when my psychological health unraveled. Out of paradise, out of latency, most aspects of life stopped making sense to me, and the pains that had been repressed inside blossomed into a big time mess.

The one redeeming element was that I started seeing a psychiatrist. I had been asking for one for years, ever since having been once to the therapist that was following my parents after my sister’s birth. Whenever I asked though, my parents would say that I should just talk to them. But I couldn’t. One day when I was eleven, I heard that my sister was going to see someone and I lost it. I said it was unfair that she could get one but not me. That seemed to do it. I got very lucky when the senior child psychiatrist who was supposed to refer me to someone else decided to keep me. I started seeing him once a week exactly a year before I was officially diagnosed with depression. And I remained in therapy with him for exactly a decade.

My first break down was all about my sense of having no control over my life. It started slowly, mostly over issues surrounding school. I started seeing my psychiatrist multiple times a week. He would have my parents over at sessions to explain that I needed to be given some slack. He told them that it would help for me to have my own room, which I ended up getting. He gave me permission to pick one day a week when I didn’t have to go to school if I didn’t want to. I realized later that he was trying to create a safe space for me to to find myself but also to fall apart, because that was just bound to happen.

I got lucky again the following year when I could enroll in a special school that used to be reserved for ballerinas. It was module-based, and you could complete it at your own pace, wherever you wanted. I finished most of my classes in the first two months. Then I focused the rest of my time on myself. This period turned out to be both alienating and fascinating. How else could you describe the experience of a fourteen year old, walking the streets of her city alone, journaling in coffee shops and hanging out in cinemas, feeling herself slowly reach rock bottom? I remember the exact moment I reached this bottom. Strangely, it felt good even though it felt painful. Like I knew, even back then, that this wasn’t the beginning of the end, it was the beginning of the real.

I paid for my unusual lifestyle myself. I started earning money when I was nine years old, recording radio jingles. My career as a talent ended quickly though, because they wanted older kids who could sound young, not young kids who could sound older. But I kept on working jobs throughout my entire adolescence, babysitting then being employed in a business owned by an extended family member.

That’s also when I started taking anti-depressants, which I took for five years straight. I still don’t know for sure whether that helped me or fucked me up even worse. Probably both. I do know that the SSRIs I took are not recommended anymore for people under 18. But based on the information we had back then, I guess it was the right call. There were legitimate questions about my staying alive, and I think my psychiatrist wanted to use all the tools at his disposal to make sure I would. And I did, so that’s that.

The following year I started again at this same special school. By then word had spread and a few more alternative souls had joined. During one of the first weeks, I wrote an essay about my experience with depression. Somehow almost everyone got to read it. A bunch of people flocked to me afterwards, sharing similar or different experiences. And just like that I found myself in a tribe again. I would still spend most of my time in coffee shops, but I wasn’t alone anymore. I started getting better and better, envisioning a future for myself. I thought this was it, my ticket to real life. Then right after Christmas, they announced that the school was closing, and my mother was diagnosed with breast cancer.

Had to take a break from writing here, to let the tears flow. This is the second source of my post-traumatic stress disorder. And that’s another time of my life I don’t remember very well. I know that the day my mom went to her first surgery, I was wondering if there was anything in the house I could take to make it all go away. I know that while my friends were making plans to land in the same school, I was busy taking care of my sister while my mom would undergo chemotherapy. I know that for some obtuse reason, I ended up enrolling in a far away school that no one else I knew was going to be at. I know that I started going everywhere with my mom, became her nurse, and even her assistant as she started a business to try to keep herself attached to life. But all I could really register was the feeling of being hit on the head by a hammer as you’re in the middle of getting up. Surefire way to get knocked back down.

My mom got better and the worse was over when I had to start school again. I had spent the summer working for her and taking care of my family. I felt chewed up by life. I felt old. And I must have looked it, because everyone at this new school thought I was a new teacher. Students and teachers alike. I was fifteen years old going on forty. This was a traditional huge high school, and my presence there was the epitome of surreal. I lasted two weeks. Then I started skipping school again. But this wasn’t the type of place where that was allowed. So I would lie, even though of course I would get found out. I didn’t know how else to manage. When I look at it now, I see how exhausted I was. I had stayed strong for as long as I could and it left me burned out. My psychiatrist started advocating for me again, recommending that I should be allowed to stay home. I got appointed a home school teacher, which turned out to be an extremely awkward experience.

That’s when my familial situation reached a breaking point. I was falling apart at exactly the time when my mom needed things to get back to normal. We were all still reeling from the stress of almost losing her. Struck by some sort of temporary insanity. My parents started questioning my psychiatrist’s choices and decided they wanted a second opinion. He had to agree so he took us to a colleague of his, who was the head of the psychiatric unit at a youth hospital. We all went there on a Monday at 10 am. I have a journal entry that says what I had for breakfast that morning and that I had planned on doing yoga that afternoon. No one had anticipated what happened next. After hearing my case, this other doctor said that if I was too sick to go to school, then I should be kept for observation to confirm that. Somehow everyone agreed, and when it was my turn, I didn’t know how to disagree. My parents left and my mom came back with some clothes so I could spend the next 72 hours there. At that point, alone with her, I begged her to take me home. I cried and cried and she cried but it felt out of our hands. So she left and left me behind.

Now tears are just pouring down my cheeks as I write, because this experience still breaks my heart. It was completely the wrong call. I was actually re-traumatized in having to be in a hospital and in having my consent taken away. I would like to write more about how I felt while in there, but the whole thing is a blur despite feeling so cutting. The lockdown came to an end and I was switched to an outpatient status. My mom would drive me every morning to make sure I would go. That lasted a month. I don’t know exactly when but at some point my soul retreated deep within me, into a hidden place. Out of harm but also out of reach. Everything became grey, and I stopped trusting everyone. My parents. My new psychiatrist. My old psychiatrist. Myself. The world.

The painfully ironic thing is, their official diagnosis for me was that there was nothing wrong with me. I was depressed, sure, but I wasn’t anorexic, I wasn’t bulimic, I hadn’t actually tried to commit suicide, so my not going to school was just me being temperamental. Which is why they kept me as an outpatient. I was told that I could either go back to school, or stay there. Blackmail by any other name. I dreaded the school so much but I couldn’t take the hospital anymore, so I went back. I finished the year a ghost of myself, eating lunch in bathroom stalls, pretending to be alive. I know that no one intended to harm me, and that everyone had good intentions. But no one actually helped me, and at the end, everyone seemed satisfied with my faking it. No one ever acknowledged how deeply I had been broken. I am still trying to get over this. I’m terrified of losing control like that again. And yeah, this is the third source of my post-traumatic stress disorder.

Everything that happened afterwards is tainted by how locked out of myself I remained after my hospitalization. That’s really the worse thing about it. Once I was out, we never talked about it again. My relationship with my family became fake. I remained in therapy with my old psychiatrist but it was never the same. I would walk through life, doing what was expected of me, feeling dead inside. I switched to a school for dropouts in order to finish my high school degree and even went on to get a college degree but I went through all of it feeling like a fraud. I pushed my truth so deep within me that I lost touch with it.

Admittedly, my time in college almost felt like the real deal. I just wish I hadn’t been plagued with deep feelings of shame and dissociation. And that my entanglement with my family didn’t always take priority over my social life. I did have a few amazing experiences despite my constant struggle with myself. When I was eighteen, I went to an extended language course in another country. For three weeks, I got to be a carefree fun young person. I made friends with a bunch of other misfits and we went out every single night. I ended up having my first romantic sexual experience there. I’m so grateful I got to have a healthy first time. The following year I continued experimenting, but ended up only having affairs with older men. Back in my everyday life, I didn’t really have the context for any usual form of relationships.

When I graduated college, instead of feeling successful, I felt cheated. I was involved in a big project with my mom that became a nightmare to manage. I didn’t know how to navigate it while respecting my own integrity. That summer I went on a long trip by myself and that’s when something in me started becoming unhinged again. I spent three weeks in a big European capital, but slept through most of it. I had a complicated affair that revealed just how desperate I was underneath my facade. When that ended, I traveled aimlessly for a few weeks, feeling how truly lost I was.

Then I went to visit the brother of a family friend. We had met in person the year before, had corresponded, and I knew I liked him. He was older but healthier and kinder than anyone I had ever met. I got to his place and somehow the stars aligned for us. We spent an entire month together. I let him take charge of everything and just dropped into being taken cared of. I told him everything that had ever happened to me. Talking to him is how I learned to talk to myself again. He became my safe place. We’ve actually been together ever since.

The following years were a cacophony of trips and moves that were all about the challenge of individuating from my family so I could have a life of my own. I moved in with my partner, who had relocated in a different city on my side of the ocean. I spent a year there, traveling back and forth, battling the pull of my co-dependency. Every single time I left one place, my fear of loss and my separation anxiety would get triggered. Each goodbye on either side felt like tearing a psychological muscle. I ended up moving back to my hometown for a year, living with roommates but working for my mom again. Then a year later I moved back with my partner so we could move to Europe together. So far away from my old life, I thought maybe I would be free to create something new. But my past kept haunting me, and I felt trapped in old patterns. I became depressed again, unable to participate in life, unable to really function.

We moved back to our American city, renting a room that felt like living at the Chelsea Hotel. The walls were painted bright yellow with a shiny gold fish pattern that looked like wallpaper. It became the jar for the darkest phase of my transformation. That’s when I discovered complex post-traumatic stress disorder and self-diagnosed myself with it. Learning to manage PTSD made the pieces of the puzzle come together. I was supposed to be in that yellow room for three months, but I stayed for three years. The first one disintegrating into my rawest state, the second one incapable of leaving it by myself, and the final one slowly rebuilding myself like a soft shell crab.

And then I moved back to my hometown. Yes, again. I did it completely earnestly, thinking this was my destiny. I needed to be there for my family, for my sister. After a month, I was at the lowest point I have ever been. I wanted to die so badly, the only thing that would calm me down was imagining myself dying. My partner didn’t want to leave me alone for more than a few minutes. I couldn’t ignore the signs that this was absolutely not the right place for me to be. And I had to tell my family. That brought up a pain that felt excruciating. The night before I was set to talk to them, I had the worse panic attack of my life. Funnily enough, when I did tell them, they knew, and they understood. There’s no helping others in denying yourself.

So I left again for my other city, where I still am. It’s been a few years now. I’ve been slowly but surely creating a life for myself there. This process got a booster shot a couple of years ago, when something I have dreaded all my life almost happened. My sister needed to get a pacemaker for her heart and during the procedure the anesthesia needle pierced one of her lungs. They didn’t realize it right away, so she went home but became very ill as her lung collapsed. It all happened very quickly. I knew her surgery had gone well and yet the next day I woke up with a terrible feeling. A few hours later my dad called, my sister was in the emergency room. I traveled the many hours that separate us in a night bus, sleepless. A strange feeling came over me as I watched the landscape pass me by. I have spent my entire life getting ready for this. Most people who have my sister’s syndrome die as kids and none are older than fifty. I have worked my ass off to develop the maturity to be able to live with this reality. And here I was, this was it, I was going to have to say goodbye to her. That’s the moment I realized, if she dies, I am not going to die. That’s the moment I realized that I can be ok with that. I have found enough reasons to live, I have become enough of my own person, that I know I will figure out a way to outlive her.

But her story isn’t over, and she didn’t die. When I got there, her lung was being restored and I watched her skin go from grey back to her beautiful mocha. My sister is extremely resilient, she’s already gone through more than most people ever will. She bounced back like a champ, walking out of the hospital on her own two feet a few days later. I followed her example and went back to my life. A week later I got sick, the stress having taken its toll. My stomach would hurt all the time, but something about it felt right. I started to feel my insides again, whereas before I couldn’t feel a thing. It was like being thawed unfrozen. I had to take care of myself and, for the first time, I actually could. So I nursed myself back to health, from what seemed like a lifetime of sickness. I lost fifty pounds in the process. I felt more like myself than ever before. I felt like I could finally love myself. That’s when my project started. And that’s where the timeline bridges to now.

So, this is it, my hero’s journey. The way I cried while writing it shows me how necessary it was for me to go there. This was the next step I needed to take. I have suffered a lot in my life from feeling like no one could understand me. Feeling trapped because I didn’t know how to show the people around me who I was. This is an attempt at rectifying that. To own my story, to reclaim my past. Now that this is out there, I feel like I can write about anything I want. And now that this is out there, I feel like I don’t have to care anymore about what anyone thinks. Everything that happened to me isn’t cause for shame, it’s cause for pride. My odyssey already has many chapters, but that’s exactly how I made it here.