TWICE THE TEST?

Twice the Test?

TW: Medical imagery

A blood test is stressful for me in normal times, triggering a variety of memories as well as my low tolerance for pain. When I found out I’d have to get my blood drawn during the pandemic, my anxiety soared. I tried putting it off for as long as I could, but eventually, I realized I would have to get it done.

After procrastinating for months, I’d built up the experience of getting a blood test during a pandemic to a very high level of fear. In addition to the usual pain and fear, I was anticipating feeling nervous because the other patients might not be wearing masks (I am currently in a state where wearing a mask is optional), the environment might not be clean (the outside of the building looks somewhat sketchy from the road), and in general, sick people tend to go to doctors’ offices and labs, so I could get exposed easily and then endanger myself and my family.

My real experience was very different.

I got to the small office right as it was opening, and aside from the nurse, I was the first one in the door. The place was immaculately clean and almost cozy in the arrangement of shelves full of test tubes and paperwork. I’d already filled in my paperwork online so that I wouldn’t have to touch the pen, but when the nurse realized I needed to initial in a few more places, I ended up not being nervous to touch the pen because of the plethora of Purell nearby.

It helped that I was the only patient, so I didn’t have to wait and have time to look around at all of the medical supplies that still raise my anxiety level even when I know they’re to help me, not hurt me. It helped that the nurse said I have good veins (a common statement from medical professionals), and that I could offer my left arm (using my right sometimes means it’ll reopen later from excessive typing if it’s a workday, and I’m very squeamish).

I started to follow my routine just like at any other blood draw, ignoring the pandemic as I took out my phone and scrolled to a cute new picture of my dog I’d taken the day before. I tried to pretend it was just his wet nose when I felt the cold cleansing swab on the inside of my elbow, and when she pulled my skin taut, I thought of how he sometimes pulls my skin like that when he anchors himself on me to stretch. 

And then, practically immediately after it was started, it was done, and it wasn’t even that bad. I got up out of the chair, paid, and left, driving home as easily as ever.

I tend to anticipate worst-case scenarios as easily as I breathe, and whenever I’m going into something that already scares me, I picture all sorts of horrible things. When I was navigating the complicated parking lot, for example, an image came into my head of having to get eight big tubes drawn (the most I’ve ever had to have), followed by the horrible sensation of a numb hand. Maybe the needle could even get stuck in my arm like what happened to me with a flu shot many years ago, or the nurse could miss, causing me a lot of extra pain.

In the end, though, the actual blood test was anticlimactic. I got two vials drawn, one big and one small, and it didn’t even hurt very badly when the nurse put the needle in or pulled it out. It was nothing like the experience I’d imagined, and it gave me hope for other upcoming potentially scary things.

I’ve made official plans to return to Chicago in two weeks, and although part of me is excited to go back to whatever parts of my life I can salvage at a time like this, I’ve been scared of a lot of things. My worst-case scenario planning predicted a lot of things correctly about the pandemic, and there’s a lot I can think of now that I would be terrified of. The one image in particular that sticks in my head is me wandering the apartment alone for hours upon hours, pacing in a frenzy, bored and lonely and desperate.

But this experience has helped show me that not every negative prediction I think is going to come true. It helps to prepare for alternatives, like how I completed the form online so I wouldn’t have to interact with the office supplies, but in the end, there’s no way to predict for sure how an experience will go. I could have had to take a lot more blood; my hand could have gone numb; I could have bled through the bandage even on my left arm. But in the end, none of those things happened.

I’m going to think back to this moment and see what I can do to reframe my thinking in the next two weeks. As I pack and prep, I want to make sure to give myself the best chance of having a successful trip back to Chicago. I don’t want to let my negative thoughts get ahead of me or sabotage me. Just like with the blood draw, everything could just turn out okay, and it’s that possibility that keeps me going as I prepare to live alone once more. 

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

BEYOND THE SMILE: A JOURNEY....Guest Blogger

Trigger Warning: Suicidal Ideation

Today, if you saw me at Trader Joe’s you may think I have it all together. I generally smile in public, sometimes I have a bow in my hair. I speak eloquently and I have a Master’s degree from a prestigious university. However, if you knew what it took to get here, or you knew what was going on inside, you may be surprised. 

I have lived with mental illness for most of my life but I was not diagnosed nor did I start therapy until I reached a breaking point in college. At first it was a relief, wow, I now had a “reason” or some context as to why I was feeling constantly anxious, unsettled and sad. While suicidal thoughts were not completely new to me in college, it was during my sophomore year when things became unbearable and I came close to ending my life one day in January 2012. 

I took a medical leave shortly after that day, I needed a shift and that landed me in intensive treatment. I remember when I first left school, I sat in a new psychiatrist’s office where I was told I would start to feel better and that was unimaginable. However, my extremely hard work in treatment and therapy not only made life “bearable” it also made life worth living. 

What has arguably helped me the most though, a close second to therapy with my life-changing therapist, has been my journey in advocacy. Since I was diagnosed with anxiety, depression and an eating disorder, I felt a responsibility and a desire to share my story, to use my struggles as a way for others to see themselves represented and to deconstruct some of the shame living with mental illness brings for so many. Many of those with mental illness feel like they have to hide, where I have realized “I see you” like I really see you—beyond the smile at Trader Joe’s has been one of the most healing phrases, moments and feelings for me along my journey. 

Over the course of the last nine years, I have embarked on multiple projects, organizations and initiatives to share my story. I have started three social action organizations, created a documentary film and I proudly speak publicly at high schools and colleges/universities. With all that being said,I believe my greatest project so far is “Bake it Till You Make it Org” (soon you be Bake it Till You Make it LLC). This is an organization based in three prongs: creativity, connection and community. 

Creativity: I have published two (almost two) books which combine mental health storytelling and baking. As comfortable as I am sharing my story, mental health continues to be a difficult topic for many. However, I have found connecting baking and sharing recipes with mental health discussion helps make these conversations feel more “palatable”. 

Connection: In addition to the books, I have had the opportunity to create a means for connection for those in my community by hosting events that combine the same elements as the books. Ever watch “Nailed it!” on Netflix? How about enjoying the in person baking and decorating competition paired with a mental health presentation, highlighting the work being done in the community. Or an “Evening of Empowerment”: a night where strangers share stories only to be connected by (I) common experiences and (II) the ”dessert bar” at the end. 

Lastly and maybe most importantly, this organization brings community by forging connections, sharing stories and building bridges between discomfort and understanding. 

I believe one of the greatest gifts to the world I bring is my story, so I often ask others: what is yours?

Dayna Altman's upcoming memoir is titled Mix, Melt, Mend: Owning My Story & Finding my Freedom. You can learn more about Dayna and her many projects at  bakeittillyoumakeit.co or http://tiny.cc/nzqmsz.

REPLAY

Replay

As soon as I get in my bright red car, one of my first steps is to turn off the music.

Instead of the radio, I turn on my phone and go to my Pandora station of choice. I’ve got three set up for the specific purpose of writing, and as I pull out of the driveway, I sink into one of my favorite stories no matter which song comes on.

My playlists are carefully curated to match different story snippets and scenes I enjoy replaying in my head. Even in just the span of a single song, I can sink wholly into a story, on autopilot as I picture what happens to each character in the scene with every beat of the song. Even though I almost completely lack any sense of rhythm, I’ve got songs choreographed to the point that I know what action happens on what beat.

I can see a character dramatically drawing a sword, twirling on a dance floor, fighting a dragon, dealing with an assassination attempt, and taking an important exam - and that’s just the first five songs that came to my head. There are so many more that I’ve been creating for years, honing and refining my ideas until they meet my exacting standards.

Sometimes I’m drawn to a song by the lyrics, and other times, a beat reminds me of my story beats. No matter the song. just about any song-story combo can bolster my mood even in the toughest times. Earlier this week, as I contemplated leaving the safety of my parents’ home to return to Chicago, I started to feel nervous, and even felt tears coming on. I almost turned off one of my newest favorites as it came on. “I’m not in a good enough mood for this,” I thought, only to prove myself wrong as I was smiling by the end of the song. It pulled me out of my negativity and put the idea in my head that just like the character in my scene, I could overcome the fear facing me in that moment.

Of course, coming up with an idea for a new song-story combo is exhilarating, but I find it just as thrilling to relive the songs I’ve come up with for the fifth or even fiftieth time. If I’m in the right mood, I can go through a whole commute replaying one song the whole time, something that I’m aware would seem irrational to many people. After all, I know how the song is going to go, and how the story in my head will progress. It’s the same every time, but just like rewatching the “Lord of the Rings” movie trilogy, it’s comforting, safe, and guarantees a happy ending.

This pastime is my favorite solution for long commutes, traffic, and nearly any situation that requires waiting. I look forward to the time I can spend with my ears plugged, lost in the stories I’ve lived so many times. And even after my interest inevitably fades from a scene, I can still feel the rush of its associated song, and it still makes me smile. I rotate between my three playlists - modern, medieval, and retro - as my interests change, but I can always find solace in an old song.

I’m anticipating the need to use this technique more often in the upcoming weeks. I’m going to be returning to Chicago soon, trading out the safe, easy bubble of my parents’ home for my own apartment where I’ll have to venture out into the pandemic-ridden world a lot more than I have been. I’m working on exposure therapy to help defuse the tension of my fears, but I’m still worried about the time I’ll have to myself. I don’t have a routine for times like these, without going to work, and I know that boredom is one of my biggest triggers for negative thoughts and moods.

Although I’m going to need to turn in my two current fanfiction stories to their collection before I return, I am going to work on some of my favorite stories that always cheer me up. Maybe I’ll even write some of them down and see what people think of them; maybe I’ll expand on them in preparation for this year’s National Novel Writing Month in November.

My creativity has always been one of my favorite parts of my mental health journey. When I was younger, I saw it as a trade-off - that I could do things like sink into stories so easily because my mind gravitated to the “what if.” At various times when the world scared me, I could always find a home in my own head, even when my head was also a place of pain. I could choose to obsess about my stories, listen to a song on repeat until I know every word, and feel good.

When I come back to Chicago, my car will be in my parents’ garage, and I won’t trust public transportation, at least in the beginning. But when my mandated quarantine runs out and I can take walks, I’m sure I’ll take my headphones, and no matter what I see that scares me, I can make something beautiful.

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

MUSIC IS THE OPPOSITE OF NIHILISM........Guest Blogger

Music is the opposite of nihilism.

This is a sentiment I discovered when working through my PTSD. In order to explain it, I have to first characterize trauma. To be clear, the exact nature of trauma is entirely unlike other emotional states—it operates on a plane of the emotional spectrum all its own. It is not the lethargy and disengagement of depression, or the persistent itch of anxiety, although it might contain those things; it is something altogether other. So describing what it feels like is something like describing color or sound. There is a strong sensory and experiential nature to trauma that can only be pointed at, not captured by, language. But it isn’t true that trying to translate it is futile, since it’s based on (or, rather, attacks) something fundamental to the human condition. In fact, it might be the thing that comprises the human condition itself.

That thing is storytelling. People do not respond well to meaninglessness and chaos. The human mind craves order, sequence, sense—and we do this against our will. The part of the brain that recognizes faces (it is a miracle of evolution we see anything other than assorted body parts, much less that we can ascribe consciousness and emotion to people around us based on expressions) works overtime, and we see them in clouds or paintings. We view objects in the world in terms of how they might serve or impede us. We have a conception of our own selves, a reflexive narrative of how we got here and why, and this unexamined set of beliefs guides our actions. Storytelling is the essential function of language—beginning, middle, end, a plot arc, more than just the transfer of raw information—and it might well be one of the oldest traditions we still do as human beings.

 Trauma, essentially, is the upending of meaning. It is the enemy of storytelling. When I was having flashbacks, they weren’t just a confusion of senses and a hurricane of feelings; they were the breakdown of the fabric of reality. In this state, words like ‘sad’ and ‘angry’ do not apply; these feelings might come afterward, when you can process the event, when you return to the realm of meaning. It took me months to fully realize I was enraged about what I had witnessed during my bus accident, because I simply hadn’t yet come down to Earth enough to possess the reflective tools to make sense of it. Without sense, there is no rage. Trauma operates in this world of senselessness, or rather in no world at all; it is the utter tearing up of the systems of the soul that relate in any meaningful way to the events around it. I can best describe it as terror, bewilderment, panic, and a feeling of profound vulnerability. It is a storm.

Many people, especially Jews who received a religious education, are taught that the basic dichotomy of the Bible, Judaism’s Yin and Yang, is “something” and “nothing.” But the substance of creation does not, in the text itself, emerge from nothingness. It comes from chaos. The insertion of nothingness into the biblical account is a much later interpretation. The struggle between order and chaos is a much more primal account of the nature of humanity and the history of the human soul, and in this account, trauma is the ultimate assault on the human capacity to construct order and meaning out of the world. That’s why so many war veterans abandon religion—it isn’t because of a methodical, intellectual conclusion that a divine power can’t explain what they’ve seen and done. It’s much deeper, much more intuitive than that. It’s because their encounter with the profound chaos at the heart of reality just doesn’t square with humanity’s attempt to make meaning, to make the world out to be more than it appears. 

But music is something different. Music can’t be ignored. It’s like a face—you have to perceive it in its totality; you’re literally incapable of breaking it down to its constituent parts and disregarding the whole. When it comes to math, you can study the terms of a formula one at a time, but music is about narrative. It’s about relationships—about meaning. Music is a kind of applied math, but it’s also impossibly more complicated. My guitar students frequently make errors in basic arithmetic because of how involved the math becomes when it’s being used to calculate the relationships between notes in a chord. Imagine doing a basic equation, but every number has a color, and its color changes every time you compare it to another term in the equation, and its color changes even more profoundly and evocatively when you compare three terms at a time. It’s easy to see—impossible not to see, in fact—the emergent color created by the blend of all of the terms. But it’s incredibly difficult, not to mention boring and senseless, to isolate each term. That’s what storytelling is all about—emergent experiences, sequences, relationships. Meaning.

Another thing about music is that it hits your body, not your mind. And your body is the locus of trauma. Some people, especially those who experienced abuse during childhood, lose memories of their trauma, but they continue to engage in behaviors, and often exhibit physical symptoms, as if the trauma were present consciously. The body knows when the mind doesn’t. And that’s where music goes. Nothing is uglier than me dancing, but when you put on a Latin groove, I don’t have a choice. Music demands something of you. It demands movement, demands attention. It demands that you make meaning out of it—and if it’s really good, it demands you make meaning out of yourself.

It’s especially this last trait that rendered music an indispensible tool for my trauma processing. It took weeks before I understood what I had been through—precisely because trauma is all about subverting understanding—and the only feelings I was capable of having about the accident were those trauma-sensations, feelings of stormy collapse. It was only in listening to music that I found myself capable of sadness and rage and loss and grief. Trauma had robbed me of my humanity, and music returned it to me. Maybe in a much broader sense, too, music is an antidote to the nihilism of trauma. 

Gavi Kutliroff lives in New York City, where he works as a case manager for child welfare. A recent graduate of Brandeis University, he's also a musician, a poet, a Wikipedia enthusiast, and an avid fan of indie coming-of-age films. He believes in the value of a public, open discourse about mental health and in the power of writing and communication to help people understand each other and themselves.

STRESS AND SUNSCREEN: WHICH IS EASIER?

Stress and Suncreen: Which Is Easier?

I woke up one morning this week to an email from work that we have a new health plan that can help in various ways. Not only will it offer a credit towards our deductible, but it will also provide helpful tips for living a healthier lifestyle.

The first step to earning the benefits and a place in a potential workshop for improving one’s life is completing a health assessment. I took a while to contemplate the questions, answering them seriously and honestly (yes, I sometimes forget to wear sunscreen; no, I haven’t cut sugary foods from my diet entirely). When the report was compiled, I was surprised to see that my overall score was considered “borderline,” especially since my efforts to curb my emotional eating has led to some weight loss and healthier habits.

I downloaded the report from the website and found the key: an answer highlighted in green was considered correct or good, and an answer highlighted red was incorrect or bad, with some shades of yellow and orange in the middle. Most of the answers for my physical health were closer to the green range, which I was very proud of, but I was shocked to see how many of the answers in the mental health section were red.

The first I noticed is a common question on a depression questionnaire I’ve answered before. Usually, these questionnaires ask questions like “How often have you felt down or hopeless in [time period]?” and there is some sort of scale to indicate the degree of severity. On this survey, it asked me to indicate if I have felt any symptoms of depression “at times,” and there was one that applied to me during the pandemic: I have felt down and hopeless at times. Specifically, I’ve occasionally felt hopeless about life going back to normal as my state spirals out of control, and down about things I’ve missed out on.

This answer merited a pure red highlight even though it’s far from the actual depression symptoms I experienced years ago, and is probably normal for many people right now. My answer was marked wrong, and the correct answer of “none of the above” was written underneath.

The next question covered sources of stress, and asked me to indicate which factors in my life have stressed me out recently. Out of a list of half a dozen, I selected only one, but the system again marked that pure red - incorrect. Once again, I was supposed to pick “none of the above,” indicating that I am not supposed to be stressed by anything at all. I was proud to be able to eliminate all of the factors but one, but apparently, that’s not good enough.

The following questions continued in the same vein: for example, the correct answer for the frequency of stress is supposed to be “rarely, if ever.” And worst of all, I was penalized for indicating that “I find it difficult to stop thinking about my problems.”

The fact that that answer was in red enraged me. I spend so much time and effort fighting back against negative thoughts and ANTs, trying to force myself out of my comfort zone, and moving on from things that have traumatized me in fundamental ways. I know that I’m not “normal” for being affected by obsessive thoughts, but I work with doctors and medication to live the best life I can with my diagnosis.

My life is not “wrong,” even if the survey indicates that I have a lot of room to grow. But this survey can’t see where I’ve come from, and where I might have been if I wasn’t so determined to fight against my head from the time I was little and my young nerdy self saw my OCD as a dragon to slay. I’ve never given up, even through many hardships, and to see the red splashed across the section seemed like a slap in the face of my efforts.

I don’t see why the fact that I sometimes experience stress should be the same as the fact that I sometimes forget sunscreen. One is within my control, and the other is not. I can control how I manage my stress, but living with my thoughts coming into my head is not optional. My medicine helps me, but especially at a time like this - and honestly, even when there’s not a global pandemic - it’s not fair to expect me (or anyone) to be able to live a completely stress-free life.

Although mental health is part of medicine, I can’t help but feel that the objectivity of medicine is misplaced here. The numbers of what blood pressure or cholesterol are “supposed to be” does not equate to mental health. Yes, it would be ideal for someone to have no stress, but that’s a completely unachievable goal, especially now. The assessment reminded me of why some of my friends think health is unachievable - the goals are too unrealistic.

I hope that as organizations like No Shame On U do more to move the country away from mental health stigma, surveys will be more accepting of individuals no matter where they are. I hope that there will be more gray areas in terms of what’s “right,” and for the people who indicate “wrong” answers, I hope for more support than advice to get more sleep and exercise. Especially after the pandemic, when many people I know are confronting thoughts and fears they’ve never experienced before, I hope there will be more room for conversations to expand this gray space and find a better way to assess mental health.

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.