The Story Collider

View Original

Cures: Stories about getting better

See this content in the original post

When it comes to mental health problems, there aren't really "cures," but in this week’s episode, both of our storytellers share how they figured out what worked for them.

Part 1: Deandra Anjahlee decides to study psychology to try to understand what is happening with her mind.

Deandra Anjahlee is a community centered educator, leader, and fresh storyteller. She is a proud Brooklynite with Caribbean roots. Themes of identity and equity ground her work on and off stage. She is passionate about creating safe spaces for intergenerational learning, growth and joy. Her storytelling evokes laughter, nostalgia, and encourages introspection. When she’s not on stage, you can find her sneaking explicit music in at your kid’s prom, or catching the last bits of sunlight in Prospect Park.

Part 2: After all other treatments fail to treat Nick Caruso’s 25-year long depression, he gives transcranial magnetic stimulation a shot.

Nick Caruso is a proud Michigan native living in Brooklyn bliss with his amazing partner and a bunch of plants. He's a lifelong lover of comedy and cinema, an entertainer at heart, and a career writer/editorial director/multimedia presenter. Nick is passionate about the intersection of storytelling and education and is always on the hunt for professional (or not) opportunities to craft and communicate new, additive narratives. He’s also an ordained minister, amateur mechanic, and aspiring 'Wait, Wait, Don't Tell Me' panelist.

Episode Transcript

Part 1

It took me 10 years to graduate college, 10 years. That's an entire fifth grader's life. And I know that's a lot because by the time I was in fifth grade, I had already been in love, I had been out of the country several times, I had my first black girl hair‑straightening rite of passage. And I was really smart, like, I was smart. I completely embodied and embraced that gifted and talented title that they used to throw out.

So much so that I got accepted into one of the most reputable high schools in the country, Brooklyn Technical High School. And when I got there, I hated it. Oh, I absolutely hated it. It was like a slow and torturous death.

Deandra Anjahlee shares her story at Caveat in New York, NY in December 2023. Photo by Arin Sang-Urai.

Suddenly, my mind just stopped working. I couldn't do homework. I could barely do classwork. I could not get to school on time, much less get there every day. Every morning, I would sit on the edge of my bed, wrapped in my towel, just paralyzed for at least a half an hour.

And I was so sad. I was so sad. I knew that this had to at least be depression.

So, I went to my mom and I said, "I think I need to talk to somebody."

And my mom loves me, loves me down, and she's one of the greatest humans I've ever met. She said, “We're too poor to talk to somebody.”

I knew “poor” wasn't really about money. That was code. That was code for being in danger.

My mother was an undocumented immigrant. So the idea that someone would be taking a closer eye or investigate me or the household, all of that was scary. That was dangerous. That could mean deportation.

And so, it was a whole lot safer for me to just hold onto these feelings and deal with it by myself. So that's what I tried to do.

I did my best. I was able to graduate from high school and I got accepted into college. I went straight in and I decided to study psychology, of course. Because I figured, at least, maybe I could figure out what the fuck was going on with my mind, or maybe I could help myself, or maybe I could even help other people.

I would start off each semester super amazing. Professors loved me. I would be at the top of the class. And, without fail, sooner or later, I would just lose it all. I would lose motivation, drive, attention, and focus. And I would feel so guilty that, most of the time, I just stopped going to class.

And this kept on going. It was a rough cycle. Until around my seventh or eighth year of undergraduate. I had already taken abnormal psychology at least twice by this point and so I started to recognize myself in these textbooks. I decided that ADHD was responsible, and I decided it was the right time to talk to someone.

I went to the counseling center on campus and I let most of it out. I was offered the opportunity to get a psychiatric assessment, which I declined. I just wasn't ready. I wasn't ready for a diagnosis. I wasn't ready for a label and all of that transparency.

Deandra Anjahlee shares her story at Caveat in New York, NY in December 2023. Photo by Arin Sang-Urai.

But I did get help. I started to learn ways my mind worked and didn't work, how to manage my anxiety and how to manage my time. I even quit my job so that I could focus on college for my last year.

But there was something else going on. Something strange. I began to feel these incessant urges, these trance‑like states when I would be playing with my hair. I remember one time, I was sitting in class, I was twirling and I was searching. I was looking for the most perfect imperfect curl. This was a curl that would throw off the whole landscape of my fro. It would be the curl that stuck out a little bit too much or it would be a Z in the middle of S curls, or like a wave in the middle of my corkscrews. The moment I found it, I knew I had to get rid of it. Like, how was I going to pay attention in macroeconomics? This was urgent.

And so I raised my hand to go to the bathroom, and my heart was racing because I was walking right past the bathroom and right past the security desk, out the door. I didn't have my coat. I didn't have my bag, I just had my wallet. I knew I was going straight to the beauty supply aisle of the pharmacy across the street. I needed to buy some hair cutting shears.

I took my loot back to campus and I remember standing in the bathroom mirror just staring at myself, struggling. Struggling with this calling to enact the ritual of search and destroy, section by section of hair. The only reason why I didn't go through with it was because I was afraid that someone would walk in on me and I would be outed.

So I went to do some research. I found something called BFRBs, body‑focused repetitive behaviors. There were hashtags all over Tumblr about this. I started to learn about skin picking and teeth grinding and trichotillomania, which is obsessive‑compulsive hair pulling. I, again, I started to see myself in these descriptions.

Around this time, I was also given a new therapist by my school, and so I decided this was a fresh start to be open and honest.

There was only one lonely article, peer‑reviewed journal, that mentioned trichotemnomania, which is obsessive‑compulsive hair cutting, shaving and grooming. So I went armed with this to my new therapist.

And she was real. She let me know she really had no idea what we were dealing with. I was like, “Okay.” She did reassure me and let me know that we were going to work through it together.

I started to feel like I was getting better. I had a few more curls by the time I graduated and I actually graduated on the Dean's List. But then once I graduated, I actually was too poor to keep talking to someone about this. So between 2016 and 2020, I was dealing with the anxiety and the depression by myself.

I'd have lots of highs and then there would be lows where a memory would come back or something painful would happen. Suddenly, I would be right back in front of the mirror, cutting and trimming and rolling up little balls of hair in toilet paper so that I could discreetly throw them away without being caught.

In 2020, in the middle of the pandemic, I found myself on a DEI team, as many other people of color did. We were tasked with the responsibility of crying out against the injustices. And because it was the pandemic, I was on Zoom all of the time.

So I started to notice something unusual was happening. My eyes. My eyes were actually getting bigger. They were protruding out of my sockets. And not only that but I was sweating all the time. I had dropped a ton of weight. In some days, I was so weak I could barely stand up in the shower

So, I went back to the interwebs. I went to the WebMDs, the Google Photos and I drew some conclusions. I didn't waste any time. I went straight to the doctor and I said, “Run this bloodwork.”

My conclusions were correct and I was diagnosed with hyperthyroidism caused by Graves' disease.

Now, of all of the trash, terrible symptoms that Graves' disease comes with, one seems to be, like, fated, almost kismet. Hair loss. So I found myself in this peculiar position where I have this autoimmune condition where, intermittently, my hair will just race down the drain in the bathtub. If I sneeze, there's going to be strands.

Deandra Anjahlee shares her story at Caveat in New York, NY in December 2023. Photo by Arin Sang-Urai.

And, man, it changed things for me. Suddenly, I would do everything I could to keep every inch, every strand of my hair. This one thing that I could manipulate and control at will was now completely out of my hands.

And I won't say Graves’ disease cured my trichotemnomania, but it absolutely changed the relationship with my crown. I would wear scarves and braids and every protective style. Sometimes, I would just wear wigs so I would not have to touch or see the patchy mess that I could so easily become.

Well, it's been about three years since then and, I mean, check the volume, check the flow. You all can ignore these stress bangs that are just crowned up the front of my face. This is still a journey I'm on. I'm still navigating all of these things. I am currently an educator, a counselor, a community leader, and I support young people wherever they are with whatever they don't feel comfortable speaking up about yet.

I started working with a new therapist a few weeks ago, and this is the first time since college. I officially have an ADHD diagnosis. I have been working with a team and I'm getting support and I finally feel like I can breathe a little bit easier. I haven't told my therapist about my hair‑cutting yet, but I do plan on sharing my story with him.

Thank you.

Part 2

My dad died last year and I have been thinking a lot about my inheritance. My genetic inheritance. There is, like, no cash.

I already look exactly like my dad, like a facsimile. We are tall, thin, except we had a belly, bald before 30 and killing it. And there's a lot of intangibles about my dad that I would like to think that I have inherited or will. He was cerebral and sensitive and kind and wise, creative, but there was also a lot of bad that Dad had, and it all had to do with his health. He had bad eyesight and bad guts and bad arthritis. It seemed like if there was a weird condition, my dad was going to contract it.

In his early 70s, it was mid‑2015, his memory began to fail. We noticed. He was old, it seemed normal, until he got lost driving around my hometown where he'd lived for 50 years.

Told my mom, obviously, and they did tests, and yada, yada, yada. In 2019, Dad was diagnosed with Lewy body dementia. Not dementia and not Alzheimer's, but a very aggressive form of dementia that forms proteins in the brain. Those proteins rapidly degrade your motor skills, your speech, your cognition.

Dad was really good at delivering bad news, though they chose after dinner on Father's Day that year to tell us, which is a strange choice, but said there were medications that could slow the progress, that they would try very hard, give up his license.

Nick Caruso shares his story at Caveat in New York, NY in July 2024. Photo by Zhen Qin.

But the disease progressed much faster than any doctor had expected and it was harder on all of us than I could have ever imagined.

Dad lost his phenomenal capacity for words, he lost control of his body. And I would wake up every morning in my Brooklyn apartment and wonder what part of Dad would disappear forever that day, a thousand miles away in Michigan.

Or if I were home, which I was frequently, I would wake up when he did, five or six times a night. Often, I would have to pick him up off the floor and help him shuffle to the bathroom and clean him and put fresh clothes on and get him back into the hospital bed that would only fit in our dining room, and convince him to sleep. I did that many times. A friend of mine said I was doing laps, Michigan-New York-Michigan-New York.

One visit, I was home. It was winter, late winter, and we were up very late again with Dad. It was a particularly rough night, and I think that's probably why it suddenly dawned on me. I realized that Dad had degraded so much that he had no idea what he had lost. He didn't know what was gone and he did not know that he would die soon.

That was way too much for me to handle in the moment so I retreated to the bathroom that he and I had remodeled when I was a kid. I holed up in there and I just wept with rage and fear and exhaustion and futility, because I didn't want to care for my dad. I wanted to save my dad. And I panicked and spiraled all in the matter of a few minutes. It all congealed into one thought, this bastardized thought that I would do anything I could to make my dad better.

But Lewy body dementia doesn't go away. There is no treatment, there is no cure. Maybe I would have literally done anything, but there was literally nothing that could be done. And when I realized that, this whole world opened to me. I saw how deep into hopelessness and worthlessness and desperation I had sunk, and I imagined how far I would go.

Dad eventually required around‑the‑clock care, which Medicare wouldn't provide and my parents couldn't afford. Though he did get into a memory unit at the very end, he didn't live even a month once he had moved.

Monsters are real. This one took my dad and it ruined fundamental parts of my spirit, permanently. Lewy body dementia, a monster, my inheritance. Because research shows that if dad's disease was caused by a certain few genes and I inherited just one of those genes, that I have a disturbingly high likelihood of also contracting Lewy body dementia.

I didn't allow myself to consider that for a long time, but a couple of years ago I did. When I did, the decision was pretty quick. I would, if I were ever diagnosed, I would end my life while I was still living.

Nick Caruso shares his story at Caveat in New York, NY in July 2024. Photo by Zhen Qin.

A month after Dad was gone, I was back in New York City. The Canadian wildfires were raging. We all remember. The city was apocalyptic and I was a zombie, 20 pounds down, drained, exhausted because I had spent so long helping my dad die. Then I held his hand and I touched his face and he did. But all of that fear and anger and sadness didn’t stop when he did. It kept going, but it didn't have an outlet and it started to compound within me and fold in on itself over and over and over, like a black hole. It became inescapable.

That summer, I also, coincidentally, got so sick that I was hospitalized for a couple of weeks. In the fall, I was fired from my new job because I couldn't perform. Right after that, I had to have emergency surgery on my eyes. So, by December, my body was wrecked and my mental health was worse because I have been clinically depressed for the better part of 25 years.

At baseline, I've been sad, disappointed, unfocused. No drugs, no therapies, no treatments ever seemed to really touch it. And now, with poor health, no job and without my dad, I found a new record low.

Luckily, my partner Hannah works in psychiatry. She was with me and with my family throughout and supported and encouraged and cared for all of us, including my dad. After Dad was gone, cared for me as I declined.

I isolated myself from my friends, from my family. My outlook was bleak and my cognition was pretty much nil. Throughout everything, she saw how much I was hurting and how terrible things were for me and recommended a little too often, looking back, that I seek some new form of help, some new form of treatment, including some many sort of extreme ideas.

But one of them is pretty well recognized. It's called transcranial magnetic stimulation, or TMS. Because treatment‑resistant depression is chronic, over time, it erodes pathways in the brain, the healthy ones that we need to think clearly, and replaces them with these deep, unhealthy ruts that are hard to escape. TMS uses electromagnetic waves to almost directly pulse the cortical region of the brain to reinvigorate those pathways that have all but died in the hopes of reviving an atrophied brain.

Which sounds like a blast, right? At that time in my life, the idea of going through a hefty round of casual head electrocution was not super appetizing, and I resisted, mightily, for a long time, until early this year in January at our anniversary dinner. Something, call it fate, call it love, helped me put the pieces together and it finally clicked.

See, my dad had many, many, many superpowers, but among them one of his best was his ability to accept. He could accept other people, he could accept circumstances, and he could accept himself. Even in his later years when he was declining so rapidly and he was so confused, he could not have handled himself with more grace. Against a backdrop of looming death that he could not even recognize, his ability to accept everything was innate and incredible. I really want that to be part of my inheritance too.

Nick Caruso shares his story at Caveat in New York, NY in July 2024. Photo by Zhen Qin.

TMS is a logistical event. I had to go to a midtown office for six weeks, every weekday, so that they could place an insane thing on my skull and zap my brain to try to stop the sadness. It was wild and it worked. I had been so sad for so long and, suddenly, things cleared up. Suddenly, I was back, which is really bizarre for someone who's been through it for a long time.

Because clinical depression feels like extreme, excruciating pain everywhere. At the same time, it feels like nothing. It is seductive, and it lures you into this safe retreat where you can just hide from everything, from stress, from life. Then it tricks you into staying there when you don't need to be. It is like a heavy weight inside you. It's not on you, it's in you. And you're tearful and you're fearful and you're incapable.

For 25 years, I went through that up, down, and then really bad, really recently, and then suddenly, it just stopped. There was that absence I was looking for. I couldn't have asked for a better gift, couldn't have asked for a better outcome. And it's all thanks to Hannah and to magnets and to my inheritance.

So thank you, Dad.