Month: April 2023

There is No “Right” Way

/ Kaiyuh Cornberg / Leave a comment

I come home from school, and sling my backpack onto the floor by our dining room table. I have been busy today and I am finally home, alone. C is still at work. After changing into my “comfies” I retire to the kitchen. I am making baked salmon and roasted vegetables. I pull out a bag of russet potatoes from the cupboard and take out four large-ish specimens. They are going down and they don’t even know it. Now, people have been dicing up potatoes for quite some time. Like, a long time. My mother taught me to cut the potato in halves, take one half and slice them lengthwise, keeping the slices together so you can rotate the slit potatoes and chop them into little cubes the other way. There you have it. Now, a curmudgeonly potato farmer’s wife might shriek and throw a potato at me if there is–if she has–a better way to do it, and I have offended her deeply. So, I’m still here, still roasting potatoes, and the only consequence I experience is eating delicious cheesy potatoes with C for dinner while we swap stories of our days. No angry Potato Throwers. It’s all good. My way was enough.

My way is enough. As long as you are not hurting yourself or anyone else and you are speaking and living your truth, then your way is enough and right for you. I’ll just tell you that the gist of this blog post is that there is no “right” way. You might want to stop reading here and that’s okay, you won’t know what dad jokes you’ll be missing.

When I was sixteen I studied at a very well-respected liberal arts boarding schools in the North-Eastern US. I had been living in Taiwan (where I was raised) and this was the first time I had been to school in the states. I was accepted and flew across the world by myself. Scenes of Wellesley College (where I wanted to study after high school), and Harvard (where I wanted to get my doctorate), and the school I had just started at swirled in my teenage mind. There were other things going on in my mind, but these weren’t so positive. I became increasingly paranoid that the ballet majors were talking about me, sneering at each other as they imitated my serious and quiet demeanor. They weren’t, of course. They were actually very kind to me. Everyone there was kind, but I became convinced that eating was dirty (according to delusions starting to blossom) and was sure that the administration was conspiring against me to derail my progress and my trajectory to writing the next pulitzer and attending an ivy league college like Wellesley or Harvard. It was decided that I was not healthy enough to be a student there, so I was sent to eating disorder treatment. I won’t go into details but let’s just say I lost my shit.

The summer after my first round of inpatient eating disorder treatment (was difficult. The behavioral aspects of anorexia nervosa, which I was diagnosed with upon being admitted to a locked eating disorders unit, are under scrutiny these days as we find out more and more about the neurobiology of eating disorders. This is hopeful because I truly believe that eating disorders may start as behaviorally motivated, they very quickly become physiological. I’m not looking for an argument, and I have over a decade of lived experience. Your body and mind literally feel like they are conspiring to kill you. The schizophrenia didn’t help the situation. I tried time and time again to go back to school, eventually got my GED, and then did a semester of college. I was a biology major heading for the pre-med track. I was so excited, but so sick. I lasted a semester–with a 4.0 I might add–and then crashed for six months. If you are reading this let’s just pause here. Below are the stats on going back to work and/or school over the past ten years:

Spring 2012-tried to go back to boarding school, did not work

Summer 2012-got my GED

Fall 2012-One semester of college, then crashed

Not sure on the year, but lasted two weeks in retail

Spring 2016-registered for classes, which I did not take because of the illness and an emergency hospitalization

The next four years I was in and out of inpatient hospitals and finally three years in a state hospital in Massachusetts

In fall of 2019 I became engaged to the most wonderful human ever (in my opinion)

See? See all the failures and gaps. The stutter steps. I am in college now, thriving in the first class I have taken for about a decade. While the above probably sounds horribly cumbersome and exhausting and disheartening. You are right. It also made me who I am today. I am resilient. Now, we’ll look at the past eight months:

Summer 2022-started Clozaril for the fifth or sixth time, and it starts working and I get out of the hospital

October 2022-spent three days inpatient for a tune-up, setting my record for shortest hospital stay EVER

Spent the next six or so months, following a routine, taking a print making class, spending time with family

Spring 2023-complete a 20 hour introductory course to Trauma Centered Trauma Sensitive Yoga

Spring semester-took my first college class in an awfully long time, have loved it more than amy class I have ever taken, and I am finishing it up at the end of the semester, in early May

Spring semester-applied to and was accepted into the BA Psychology program, which I will take at the college in my hometown. This was a big deal

So what? you might wonder. I can only describe my circumstances and it’s up to you to empathize or not. I don’t need anyone’s attaboy. I know what I had to do to get where I am today. I might not have known it a the time. I felt like I had meandered off the path of success and would never find my way back. It took a very loving partner C and my amazing parents to hold my hope flag while I was not able to carry it for myself. I realized that I had not actually wandered off the path. I was on MY path. So I kept going. What choice did I have? I had tried to die many times, and each time I failed. I figured, not without humor, that I wasn’t sane enough to make a plan successful. I came pretty close, but was obviously thwarted. I thank the universe, God, whatever is out there with all my heart. There is no right way to live a life worth living. Some folks have linear paths and don’t think much of it. Others, like me and maybe you, are forced to take the “scenic” route. We didn’t ask for this. Nor can we do anything over again, the “right” way. There is no right way. You are on your way, and that is enough.

Your Symptoms Do Not Determine Your Worth

/ Kaiyuh Cornberg / Leave a comment

I used to have a tendency to determine my worth based on the symptoms I was having. If I was hearing a lot of voices, feeling demons stroking my arms with their horrible talons, I felt as though I was a the worst of the worse. A base creature. Below cockroaches and earth worms. No offense to them. One of my most common delusion was that I was in terrible trouble, that I was going to be accused of a terrible, unforgivable crime that I did not commit. In the hospital, I would meander around the unit, asking people repeatedly if I was in trouble. Some days I was so paranoid that leaving my room was not an option, except to get my meal tray. Sometimes not even that. The voices that rolled around my head all day sometimes made me feel so horrible that I obeyed their commands to injure myself. This happened a lot and at times was very serious. I always felt like I deserved the pain I inflicted on myself. I hated myself so much. I hated the voices. I hated the people I feared, which was at times, anyone who looked my way. It was a sorry state of affairs. Things are much different now. Sometimes I cannot believe my good fortune, the gifts that materialized in my life, the uncharacteristically good choices I made that moved me towards being part of the community sand not a forgotten patient on the back ward. The back wards were my stomping grounds. Not anymore.

I have been out of the hospital for six months. I have been on a medication called Clozaril for almost nine months. Every day my head is a little clearer. I feel like my thoughts–Kaiyuh’s thoughts–take up more space now than the voices. Now as I write this, I am not experiencing any voices. They are usually there right when I woke up, but lately, I have been having beautifully quiet mornings, too. Sometimes this doesn’t seem real to me. I feel good about myself, not because I am less symptomatic, but because I know how hard I worked to get here. And I am grateful for the support of medication and family that I hold dear. I don’t glorify the days of heavy, disturbing symptoms. I dream about them sometimes, and wake up shaken, checking my mind for deficits or things that should not be there. I won’t go too far into the extent of my institutionalization, but believe you me, it was deep, hard and still haunts me to this day. I would be lying to myself, and to you if I said I didn’t have work to do on my trauma. I just try not to take it out on anyone. I am much stronger now, stronger than I have ever been, but I am not perfect. Nor am I striving for that. I am going for steady. And so far so good.

I had a tough passage about a week ago. I began to slow down, catatonia creeping in. I alerted my family as soon as was humanly possible, and my parents came immediately to our yurt, where I was lying in bed, willing myself to feel better. My mother administered medication for both catatonia and psychosis. I bawled that I would NOT be going to the hospital. That was the absolute last case scenario. I refused. I kept saying it even as they assured me I wouldn’t be going to the hospital. C came home early. I was grateful, but I felt a little silly for upsetting everyone’s days. They were so loving and helpful. Let me tell you folks that my family members are my heroes. I want to be like them when I grow up. Or right now. Am I grown? Yes? Partially? We’ll find out. I am also aware of the immense privilege I have being a white woman with serious mental illness. I do not have any addictions or secondary medical diagnoses. I know this sounds strange, but I am glad I “only” have schizophrenia. Maybe that is why I am so hard of myself. Let me explain. I used to want to berate myself for any increase in symptoms. I couldn’t accept that because of my brain and the fact that I could not control it perfectly made me angry. I refused to cut myself any slack or show any compassion because other people had it so much worse. It has taken me a long time to realize that I am doing everything I can do to live a meaningful life, and comparing myself to others was a losing battle, and completely unfair. I believe fully that it is possible to recover from schizophrenia. To go into remission. It might take time–a lot of time–but it is possible. I am not there yet, but I am moving toward health and stability. It is a daily process, but it is one I am up for. I will never give up on my dream to become I clinical psychologist and a Trauma Centered Trauma Sensitive Yoga teacher. If you are out there living with schizophrenia or anything that creates obstacles as you strive for your goals, know that you are not alone. Reach out. Ask for help. Be the hero that you need. And never forget, you are worth the struggle.

Sometimes I wonder if I am just pandering. That I am just spewing platitudes. The truth is, sometimes I don’t have the words to describe my internal experience. Sometimes I don’t want to share my internal experience, because it is mine. I will say that breathing, meditation and yoga are not cure-alls. They are great, don’t get me wrong, but some mental illnesses need more than journaling, daily walks and talk therapy, though all of those things contribute to a life worth living. The truth is that most folks living with schizophrenia need pharmaceuticals to manage severe and unrelenting symptoms. I was in denial, my family was in denial as I cycled through antipsychotics that gave me tremors, pushed up my weight by twenty to thirty pounds. Though I wish I could say that this med or that med will help you, save you from the pits of psychosis, but the hard reality is that you are going to have to find what works for you. You might feel great on the first med they try, you might have to keep looking. Clozaril is a last ditch effort, I was a last ditch effort. But I am well, now. More well than I have been in a decade. I know I talk about this a lot, but if you are reading this, you know it is not to brag or glorify myself, but to show you that healing is possible, and that you are not alone. Don’t give up because you can and will surprise yourself. Again, this blog is non-prescriptive. I am not telling you to take meds or not to take meds. I am talking through my own lens of experience. Youve got to do you.

Thank you for reading this tome. Wasn’t sure where it was going, or even where it went, but such is life. Sometimes all we can do is meander until we find ourselves again.

29

/ Kaiyuh Cornberg / Leave a comment

Today is my birthday. Way back in the early 90’s, I was squeezed out of the birth canal in a hospital in Alaska. Unfortunately, I don’t remember any of it. On the other hand, that might be a good thing. Birthday parties have always stressed me out to the point of breaking down I was three years old, in my party dress, refusing to play with the other kids who had come to celebrate with me. To be fair, I was three, and was probably just tired, cranky, and hungry for cake. That was the last big party I ever had to endure, as my parents picked up on my reservations when it came to playing games and eating finger food with a herd of children. Despite being a child, I didn’t much like other children. They didn’t make sense to me. They didn’t feed me or play the games I wanted to play. I was a spunky kid, but for some reason I always had a tough time with birthdays. Until now.

When I woke up this morning in C’s and my bed in the loft of our yurt, I felt instant butterflies. My birthday! No two ways about it, today is my birthday. I am 29. C and I shared a sweet morning, smuggling while listening to our song, shoveling the deck and Emerson’s paths behind the outhouse, drinking our favorite coffee in front of a mercifully hot fire (it has been chilly this week). We took a long walk up the road and back, talking and laughing as our boots crunched through the newly packed snow on the winding country road. I felt very peaceful. Dozy, even. I attributed that to the Clozaril, which I think is working better and better for me. I am slowly coming off some of my other medication (under my doctor’s careful watch, of course), and my energy is a lot less “jangly.” I use the word (actually I’m not sure it’s a word) jangly to describe a kind of nervousness that makes focusing on one thing difficult. One particular med was causing this, and I finally realized that I had found the culprit. Decreasing it has already made a significant impact and for that I am grateful. And of course, the walking. Never do I feel as good as when I am outside walking with my family. This hour or so walk was a birthday gift in and of itself, that and the wan sun I peered into, wishing my vitamin D levels well.

C and I work well together. After our walk we cleaned the house–vaccuming, Swiffering (dry and wet), dusting, arranging. I felt so at ease, so energetic, yet also calm, and hungry. I have been nourishing myself with healthy, soul-filling food and my weight is stable. I am in the best shape of my life, if I am being honest (and tooting my own horn a wee bit). I’m just grateful for my body’s resilience. I strive to take care of it as if it were a very precious object. Some might say our bodies are in fact precious objects. I would agree with them. When I was not in a good state of mind, I could care less about my body. This can be a symptom or reaction to many different life events or circumstances, and you reading this might relate. Living with schizophrenia also means care-taking your body and mind. For many years I relied on others to do this. Now I have taken that power back. I choose to take as best care of myself as I can. Good food, regular bowels, sound sleep, daily movement, supportive relationships and purpose. Of course, I don’t have these all figured out to a T, but I am pretty good at checking in with myself for all of these focus areas, and today, on my 29th birthday, I would say that I am a fully functioning adult and participant in society. I am a student at a university, a student of yoga, a loving spouse and daughter. I make art. I write. I run and ski and rock climb. What better way to celebrate my 29th year than to do the things I love to do. Today it happened to be snow shoveling and relaxing in bed with C. And dinner and cake with my parents of course. My sweet, hilarious mother is making me a yellow cake (kek!) with chocolate frosting. And I am very excited to have a piece. I don’t need to give my birthday away to an illness. I am not that illness. I live with it, but I am not it. I am Kaiyuh, and it’s my birthday. I honestly thought, many years back, that I wouldn’t make it this far. And here I am. I love proving myself wrong. I also love being alive. For now, I cannot complain.

No Longer a Patient

/ Kaiyuh Cornberg / Leave a comment

I used to be fascinated by hospital bracelets. I’ve been to hospitals on both coasts of the contiguous United States, and three hospitals in Alaska alone. That’s a lot of bracelets. Sometimes they would remind me of my name, as I weathered delusions of being Joan of Arc, or an evil ghost. Sometimes I would leave my bracelets on for a week or two after discharge. This was in my late teens and early twenties. By my mid-twenties, I would rip them off as soon as climbed into my family’s car when they picked me up on discharge day. I wanted to burn them, because every time I came home I claimed it would be the LAST TIME in the hospital. October 2022 was my last time in the hospital. I got out after only three days on the unit. I was ready to go, and they let me go. That was the last time, and I proclaimed nothing, except for a very small pledge to myself that I would do anything and everything I could to stay home. I cut off my hospital bracelet and cut it into pieces, then pushed it to the bottom of our kitchen trash. It was over. No more bracelets.

It is April now, and the closest I get to the hospital is when I go to my psychiatry appointments, which take place in a building kitty-corner to the main hospital building. I sometimes catch myself smiling as I drive past the turn to the Emergency Room, happy not to be going there. I also feel solemn, feeling my privilege–I’m on meds that work and are accessible to me via insurance and a caring psychiatrist. A lot of folks out there have no insurance. I am able to drive a car. A lot of folks out there have no car and no access to what little public transportation my town has. From a standpoint of intersectionality, I am pretty darn lucky.

Over the weekend I was changed. I changed. I chose to change. I took a 20-hour Trauma Centered Trauma Sensitive Yoga class. In many ways, it was like many classes that I have taken in the past–slideshows and note-taking and yoga practices. In many ways, it was not. in many ways, it was the most pivotal class of my life. I learned that the language used in TCTSY is purely invitational, not prescriptive or coercive. In my 18 years of nurturing my personal yoga practice, I have always just followed my instructors blindly, doing whatever they told me to do. There is nothing inherently wrong with more prescriptive sorts of yoga. For some people, it makes them feel powerful and they want a workout to boot. I practiced for years like this, primarily for exercise and strengthening my body. I was lucky to have never in all my time practicing, hurt myself in a yoga form. As someone who has experienced trauma, my body remembers. As soon as the first practice of the class began, our instructor’s voice helped me shift into a container in which I could feel my body. At first it was difficult. I couldn’t quite locate my body in the space around me, which as a practice is called exteroception. I could just start to feel inside me–something called interoception. All forms (called “poses” in most yoga classes) are invitational. I was not told what to do, but was invited to try each pose in my own time, in my own way. I felt safe. There is so much I could say lauding the evidence-based success of TCTSY, but I will save my breath on that for now. I will say that I fully intend to become a Trauma Centered Trauma Sensitive Yoga facilitator in the near future. I will serve the underserved in my community, joining a cadre of colleagues (yoga teachers, TCTSY facilitators, and clinicians) on my path toward my own healing, and eventually, empowering others to make choices toward healing. In lieu of waxing on and on, I will share a much wiser Woman’s words. From Lilla Watson: “If you have come here to help me you are wasting your time, but if you have come because your liberation is bound up with mine, then let us work together.”

Aligning myself with this quote and all I have learned through the training, I no longer view myself as a patient waiting for the next time a bracelet is slapped on my wrist and I am carted off to the psych unit. I am not a patient. I am a woman living with schizophrenia and PTSD and high functioning autism. I am living in the community as a student, a partner, a daughter, an artist (or maker of things if I’m not taking things too seriously). I have many blessings that have allowed me to take this path toward facilitator/clinician and away from victim/patient. I don’t even like the word victim. Survivor is okay. We’ll go with that. I am a survivor, but I am not helpless. Quite the opposite. I am not going to tell you “it will all be okay” or “you are strong.” Those platitudes usually don’t help much. In fact, they can be triggering. What I will say is that I hope that on your healing journey, you feel that you have choices to do the things you need to do to take care of yourself. Life is tough. You know this. Healing is tough. You know this, too. At the end of the day, as survivors, we were denied choice when it mattered most. And now we are left with a frightening situation. If we have more choice, it might feel overwhelming. If we are still being denied choice, we are still living in fear with not control. It doesn’t matter that “you are not alone.” That doesn’t even mean anything anymore to me. Sometimes there are no words to say to someone who is taking back their power, in the light of trauma, either repeated or an isolated situation.

I am choosing to take care of myself. To take my medication as prescribed, to go to therapy and psychiatric appointments, talking with the people closest to me. I hope you can find ways to make choices toward yourself and your agency. I hope that you can find settings and folks who empower you. I hope you feel like you are enough. Because you are, but this is something you will have to believe for yourself. I cannot make you, but I will invite you to take a pause, and consider yourself as someone who deserves peace and healing. Because you do.