Writing is healing. I don't edit these after I write them.

Diversity in ability

FEB 17, 2023

Diversity is found to improve a group’s ability to tackle complex, non-routine problems (Phillips, 2014).  Diversity is often discussed in terms of race, gender, sexuality, age, and socioeconomic status, but rarely in terms of ability. And even when disability is brought up, it often stops at conventionally "noticeable" disabilities of immobility, hearing, or vision. 

But there’s more to disability:

Neuropsychological: depression, anxiety, addiction, insomnia, personality disorder, eating disorder, substance abuse disorder, post-traumatic stress disorder, obsessive compulsive disorder

Motor: tremor, rigidity, gait deficit, turrets, weakness

Cognitive: ADHD, Dyslexia, Alzheimer’s, Dementia, Head Injury, Stroke, Aphasia, Autism, Asberger’s Syndrome, Down Syndrome

Health: chronic pain, chronic fatigue, chronic nausea, chronic tinnitis, maldigestion, allergies, immuno-compromised, diseased, injured, epileptic, diabetic

When groups don’t have representation from disabled folks they are at risk of perpetuating ableism, which is the negligent exclusion of those with non-mainstream abilities. In addition, the group will lack the perspective and creativity that comes from brains wired differently.

As a traumatic brain injury survivor, I’ve learned firsthand that the medical field often lacks perspective of the people most reliant on it: the disabled and chronically ill. Stephen Hawking isn’t on the given list of scientists for this assignment but deserves to be discussed for his contributions to science while managing neurodivergency and progressive disability with ALS. 

Born in World War II-bound England in 1942, Stephen wasn’t a top student but had abundant curiosity (Famous Scientists, 2018).  At age 17 (1959), he reluctantly accepted an invitation to the University of Oxford to study natural sciences, which he worked on erratically and infrequently. He became increasingly clumsy with inconsistent motor control. At age 21 (1962), doctors told him he had an incurable, progressive illness, eventually diagnosing him with ALS. He was told he had two years to live and slid into a dark despair. He eventually resiled with the assistance of Richard Wagner’s operas and falling in love. 

Ready to finally pursue his obsession with cosmology, he moved onto the University of Cambridge for his PhD. In addition to his brilliance, Stephen’s neuro-atypicality was exhibited in his frequent outbursts towards his advisor, Fred Hoyle, with whom he publicly debated singularity theorems of space-time. 

As lab work became impossible during his declining control of his limbs, he leaned into theoretical work. In the 1970s he published numerous papers on thermodynamics, relativity, and quantum mechanics, laying the foundation for topics discussed in my own classes today of chemistry and physics. These are important for my goals of becoming a neuromodulation specializing physician one day. 

In the 1980s he traveled frequently for cosmology conferences and guest lectures. However, immunocompromised due to ALS, Stephen contracted pneumonia. His wife was told by doctors that the only way to save his life was perform a tracheostomy surgery, which took away his natural speaking voice. Stephen frustratedly communicated with spelling cards and eyebrow movements until Intel developed a computerized voice synthesizer system. His new communication challenges taught him lessons of brevity so he published A Brief History of Time, a book which made complex science concepts comprehensible to anyone. He published various other accessible books in the 1990s while also pushing the envelope on quantum gravity, wormholes, time travel, and other space-time topics. 

During his elderly years, Stephen, opened the 2012 Paralympics, collaborated on popular science media projects, enjoyed a zero-gravity flight, won prizes for his Hawking radiation theories, raised public awareness for ALS, and received the highest civilian award from President Obama.  All while prosthetic-bound and speaking through a machine. 

In 2018, at age 76, Stephen Hawking’s ashes were laid to rest between Sir Isaac Newton and Charles Darwin (Estate of Stephen Hawking c/o United Agents LLP, n.d.).


Other disabled scientists that have contributed greatly despite the abilities they were handed: 

Harold Brewer Hartley, biochemical engineer – arthritis

Ruth Fairclough: mathematician and statistician - paraplegia

Sara Ranklin:  leukocyte and stem cell biologist - dyslexia

Jazmin Scarlett: volcanologist - chronic pain, chronic fatigue

John Ambrose Fleming: electrical engineer - deaf (Royal Society, n.d.).



Phillips, K. W. (2014). How diversity makes us smarter. Scientific American, 311(4), 43-47.

Famous Scientists. (2018, August 17). Stephen Hawking - Biography, Facts and Pictures. https://www.famousscientists.org/stephen-hawking/ 

Santi Visalli/Getty Images. (n.d.). Stephen Hawking. Biography. https://www.biography.com/scientists/stephen-hawking

Estate of Stephen Hawking c/o United Agents LLP. (n.d.). Stephen Hawking Biography. https://www.hawking.org.uk/biography

Royal Society. (n.d.). Celebrating scientists with disabilities https://royalsociety.org/topics-policy/diversity-in-science/scientists-with-disabilitie

scribbled self portrait in black ink

what they don't tell you about recovering from tbi

SEPT 23, 2021

Recovering from traumatic brain injury isn't linear. Or ever really "over." Here are some things my medical team and rehab therapists didn't tell me outright so I learned the hard way.

1. Your recovery is up to you, Carlie.

It sounds so silly to say now, but for the first 9 months after my accident (May 2019), it didn't occur to me that my brain was only going to get better if I put in the work to exercise it.

I spent month 1 comatose and wildly hallucinating. There were a lot of post-injury complications so my medical team's biggest task was to get me awake and eating.

I spent months 2-4 in Day Rehab at Shirley Ryan AbilityLab in Chicago. For seven hours per weekday, I practiced picking up beads with my fingers, moving my head and focusing my eyes on the same spot, and writing a bulleted list of items to buy at the grocery store if I wanted to make sandwiches for lunch. I thought rehab was super dumb and wanted to get back to Philly to have coffee with my friends.

In months 5-8, I convinced my parents to let me move back to Philadelphia and go to outpatient rehab at Penn Rehab part-time. Like I said, I didn't understand that rehab was of the utmost importance at this stage but was instead fixated on regaining my independence, being near my friends and boyfriend, and the living the life I had grown accustomed to during college.

During this period, I battled debilitating fatigue. The everyday level of fatigue felt like I was super hungover, had run a marathon, taken the ACT, got broken up with. All of it at once. Add severe intellectual disability to it and I was essentially as cognitively developed as a five year old. I did only what my parents, therapists, and doctors made me do...which was about 5 hours per week of occupational, speech, and physical therapy combined. Would you expect a 5 year old to understand initiating themselves to set themselves up for success in the rest of their life? In November 2019 I was discharged from Penn Rehab for plateauing. The rehab therapists couldn't bill my insurance any longer because they weren't proving any improvements from it.

Since Penn Rehab couldn't help, and because I was privileged, my family and I decided we'd try the extreme: go to the Surrey Neuroplasticity Clinic (SNPC) in British Columbia, CA to do the PoNS Treatment. There, I met other TBI survivors that had been living with disability for many years. One woman, Heather, was at SNPC to work on her balance and gait, which were major disabilities for her despite having obtained her injury 20+ years ago. She went on about how "every day is a chance to recover!" Every day she wrote herself affirmations, then she did a 20 minute balance exercise, then she read the newspaper. After taking a nap, she went on a power walk, and cooked dinner.  I was floored by her commitment to improve even though decades had passed and she was still quite disabled. Heather's attitude was so shocking to me because my clinicians at Penn Rehab made it seem like I was sentenced to a life of disability. Meeting Heather was the beginning of the inflection point that occurred when I did the PoNS Treatment.

2. Exercise is key. Even my neurologist admitted it seems more effective than the SSRIs she prescribes, but patients never like to hear it.

3. Find your tribe of survivors ASAP. Let's be real. You can't fathom a brain injury unless you've had one.

4. Adopt a growth mindset and get used to failing all day every day. Time will pass and you'll realize how much you've recovered.

5. Brute force gratitude journal, even if you don't believe the things you write down.

6.  Desperate times may call for desperate measures, little of which the medical community is willing to consider or help you with.

A. I took psychedelics.

On mushrooms I found trust in myself again. With my brain injury I lost my entire sense of self. Not only were my abilities and "potentials" gone, I no longer had the feeling of confidence in myself and how I interacted with the world. My accident coincided with my college graduation, so when I was contemplating what I would do with my life now that I was disabled for good, my community had moved to new cities to start new jobs, new relationships, and new lives. There were unreturned texts and visits that never came. COVID started and to deal with my new reality without my community. Pre-accident, I think I would have trusted my judgement enough to say to myself, it's a them thing, I'm not taking it personally. However I didn't have such a foundation to fall back on and I internalized my loss of community as deeply personal. It's because I'm a bad person. It's because I no longer provide social clout to them. And never will. It's because my personality is gone now. I don't feel like a person and I'm not being treated like one so...I must not...be one?? I had tried the whole "just believe in yourself"  or "just love yourself" thing to no avail. But I deep down just didn't. I had read that psilocybin helped former NHL player Daniel Carcillo recover from  symptoms and PTSD following his multiple brain injuries. So at about month 28 post-accident, I was suicidal and didn't have anything to lose by trying mushrooms.  On them, I was able to actually agree when I told myself, You are good, Carlie. You're on the right path. I've taken a 1-4 gram dose every 6 weeks since. I firmly believe in my self worth and am able to trust my feelings and instincts again.

On ketamine in a club in Bushwick I saw Old Carlie in a mirror.  Old Carlie was attractive, confident, and seeing techno in New York. She was in her twenties doing things that people in her twenties do. Seeing Old Carlie that night was jarring because at that point I had already accepted Old Carlie had died when New Carlie was born. New Carlie was heavy, awkward, and too anxiety-ridden or tired or head-ached or overstimulated to go out. But I was still Old Carlie. Old Carlie hadn't died fully, she was just hibernating and recovering! That single night on ketamine  fundamentally viewed the way I see myself.

B. I did the PoNS Treatment before it was FDA-approved, against the recommendation of my physical medicine physician and neurologist. I will shout on the rooftops until this treatment is available to everyone in need of some neuroplasticity.

I have to study for my chem quiz. Will finish this later.

hellish metaverse

SEPT 23, 2021

This is mostly a journal entry. Didn’t edit it. 

I’m absolutely not okay with giving up more data to tech giants. They have my digital fingerprint, which includes my community, education and economic history, interests, & political beliefs. It’s very jarring how much they know about me. I feel like my parents typing that out. 

What tech giants don’t have a full picture of is how my brain reacts to the world in real time, when I’m not being tracked. While they can predict what I might buy if they can nudge me about it enough times and in a certain influential way, no AI could predict how I might change as a person while I go through the incredibly unpredictable “life” thing. Thank God. AI is limited by how much data it has, and the hopeful part about our current relationship with AI is that 24/7 data collection isn’t occurring. 

I’m mostly afraid of entering such a space where Meta and its affiliates firstly store and secondly interpret data points about my feelings, thoughts, and real-time actions, which are largely inaccessible to the giants today. The more often they can keep me in the metaverse, the more data they’ll have, which they would love to have. Next, they have so much data that they can create a model for my neuropsychological functional network. With that, they will create events, content, and functionality to my metaverse that literally massage my brain to change in ways that are optimizing for some KPI that Meta desires (money, power). Having worked in Martech, I now there isn’t really a limit to the AI models that can be used to predict things about users. Before I even have the autonomy to decide on my own or let my brain react to the universe as it naturally, spontaneously occurs, I am a Meta peasant, reacting to the metaverse, which is more crafted than spontaneous. Let’s not even go into how our brains have evolved in the natural universe, not some AI-driven metaverse. 

Anyway, if the outcome that Meta was optimizing for was utilitarian, I actually would be fine with entering the metaverse because I guess I don’t think reality in itself is necessarily a gift. For the first month after my TBI, I was not in touch with reality – I was convinced I had a sex change surgery that entailed implanting Stegosaurus spikes on my back, that my hospital was lesbian-run (??), and that my best friend admitted to me he was in love with me. None of this happened in “real life”, but from inside of the reality I was experiencing, I was at least neutral. I was like “huh, yeah, I guess this is what’s going on”. Dreams are like that too – as weird as they are, you’re like “okay, sure”.  

Unsurprisingly, I would much have preferred that to the one I woke up to where I was disabled, extremely ill, selfless, confused, and hopeless. Because of that experience, I’m not here to claim “real life” reality is the only way, just because it seems natural. Schizophrenics report that during their most intense periods of illusionment, they were incredibly happy – as long as they weren’t harming themselves or others, I don’t think their experience should be labeled as inherently negative. At the peak of my suffering in the aftermath of my accident, I begged to re-enter a happier universe, the bizarre sex-changed one included. It was very hard to accept that I had three options: become dependent on street drugs, kill myself, or just be steadfast with my situation and make it work. Escaping to a happy metaverse wasn’t an option and I’m SO glad today that I chose steadfastness. 

But let’s say there was a happy metaverse to escape to if “real life” reality is pure suffering. This is a vision that techies get thrilled about and I’m sure even Mark believes he will build this. However, I guess I believe in the fact that brains are ultimately self-serving. Our capitalistic society is evidence of that, no? Mark Zuckerberg and Co. have already proven that money and power are their core KPIs. See Facebook and Instagram. They exploit our human need for socialization, apply AI algorithms that optimize engagement (addiction), and make a huge pile of money on ads and e-commerce. Is there really hope that they’d create a utility-optimizing metaverse? I’m not excited about society handing over their brains to Meta. 

scribbled self portrait in black ink


may 20, 2020

Neurological disorders are uniquely horrifying to experience because unlike literally any other trauma, you do not have the comfort of yourself to rely on. Knowing how

 your brain – ho

w it problem solves, how it experiences emotions, how it regulates the rest of your body, how it exists in space

unidentifiable scribbled self portrait with black ink

on cancel culture

July 21, 2020

Throughout the polarizing events of 2020, I spent time both in Philadelphia and rural Wisconsin.  I started working part time in April and the transition was difficult. More difficult was doing this while quarantining alone in Philadelphia. So I went home for a few months. I saw at dinner tables with my conservative family who ridiculed the mask mandate, the economic shutdown, and BLM continuously. I sat there often thinking, Hey, I’m pretty sure…I learned some things in college and I don’t agree with you. But what was it I disagreed with? I couldn’t label it. Like most specific topics, these politics were wiped from my brain during the accident. I wasn’t armed with rebuttles and even if I had been, I wouldn’t have been able to articulate them in a debate. I was still quite cognitively juvenile. So I sat there, being scoffed at for my “delusional thinking” at supporting various left-leaning movements. Wait. Am I delusional? Am I a bad person for thinking what I think?

So I went to my friends from college, asking for advice on how to defend some of these political topics. They replied sparsely and at the time it felt like they were nearing canceling me for even entertaining conversation with those hopeless bigots who were my family members. 

Regarding the recent accidental offense by the Dean of USC’s Marshall School of Business, I appreciated the school’s Susan Hermling's point about society’s current combatant method of canceling. She said, “the only way out of difficult situations like this one is through dialogue and understanding. There are no shortcuts; only dialogue and understanding will work. The alternative is further suffering and pain for everyone involved.” 

I agree that our method of combat shouldn’t be canceling by default. Situations like the one at USC can occur, but it’s also an ineffective way at getting the Right to listen. Many of the conservatives I know don’t acknowledge the potential validity of most cancelations at all (which, as far as lacking open-mindedness, is undoubtedly a character flaw on their part). But in order to change a person’s mind, we sometimes have to be willing to play their game unfortunately, and being conscious of the method with which we combat is one way to get closer to winning. 

somewhat recognizable scribbled self portrait in black ink


April 28, 2020

Amidst Covid-19, I have finally re-entered the workforce at 20 hours per week. The combination of the two has me thinking about gratitude.

Since my accident, I have been suffering with a lot of things my injured brain struggled to properly: working memory, memory formation, attention, processing speed, decision making, social and emotional intelligence, creativity, stress regulation, learning, thought organization, external stimulation regulation, metabolism and appetite, balance, leftside coordination, blood pressure regulation, and more. Because all of these systems were hindered , it meant that my body has had to work extra hard. Take out activities like exercising and working and my brain is still exhausted by the tasks required to be alive; I am chronically fatigued.  This is not even touching on the fact that my entire life was uprooted, which was emotionally difficult to reconcile. Though it wasn’t back to normal, my quality of life drastically improved during PoNS because a lot of things those background tasks were automated again, meaning activities were easier and I wasn’t baseline fatigued. I felt like myself, like good ‘ole Carlie – engaged, passionate, curious, goofy, busybodied, energetic. Newly reminded of what it felt like to have a healthy brain, it became clear to me that all 22 years of the life I had lived before my accident were done so completely unaware of the degree to which I was fortunate to have a healthy brain. 

That’s the thing about gratitude: if people never experience trauma, I believe the human mind is literally incapable of fathoming it. And though I had such a manic period of enlightenment after PoNS, I have recently felt like I have regressed backward because my health once again is wavering because of how demanding this new job is for my brain. Every day after working just four hours, I feel like I have run a marathon, I’m starving, I probably have a migraine, and I need to go straight to bed. Despite how peaceful and happy I felt before starting this job, I am reminded every day that indeed I am not as recovered as I thought. This recovery feels like it has been lifetimes, like a bad psychedelic trip that never seems to end. 

Amidst the suffering, depression, and existentialism of late, I came across a piece written by a Covid nurse in a New York City ICU. The grief she described she was witnessing was, as I already had accepted logically during my first gratitude enlightenment months ago, unimaginable to me, a person who should be well-versed in trauma, right? Reading her piece though, my whole heart dropped so deeply into my chest. My first though was: the grief she has watched makes my TBI look like a cakewalk. 

I’ve spent the last 28 hours wrestling with how scary it is that suffering has no limits. Infinity, just like gratitude, is a concept that the human mind cannot truly grasp. Reading about the patients and families she has cared for, I realized that despite everything this last year has been, and debilitating the chronic fatigue and migraines are,I would give anything to be in the exact situation I’m in at this moment if I were in the shoes of her patients or their families. 

I think perspective is necessary to truly hold gratitude, but  perspective itself requires a degree of comparing one’s misfortunes to those of others. Comparisons, by nature, necessitate a standardization of units – the apples and oranges concept, you might say. The mother of a young deceased Covid patient could be much more traumatized than I have ever been during the last year, especially because I didn’t lose any loved ones. However, if she were capable of grasping what it’s like to lose her mind, perhaps she’d say I have it worse off and feel grateful for the fact that during the grieving of her son, at least her brain was working well (she had control of her body, she could problem solve and think with clarity, she had energy to go about her day, she trusted and knew herself). 

But comparing the grief associated with losing her son and the grief of becoming severely brain injured just doesn’t seem right. For this reason, gratitude and mindfulness must be an actively approached part of our daily lives if not handed to us upon risiling from an unforeseen hardship. Though I’m entitled to feeling my own pain, I must at the same time savor every phone call I have with my loved ones; though the mother of the young patient will wail for her son, she must take note of her ability to easily make decisions and communicate effectively in the moment of crisis climax. 

This is the first longform piece of writing I have done in more than a year and maybe it doesn’t make any sense to you, but there is some clarity in it, at least for me. It’s been hard to clearly wrap my head around such complicated conceptualizations but I’m working on higher order tuning in addition to surviving a part time job right now. This took a lot of concentration –––fuck, i was supposed to rest for the rest of the day. Hope tomorrow goes okay.

gaunt scribbled self portrait in black ink