Life

I’m very open about my traumatic brain injury in 2003. I have shared that my art is a direct response to this trauma. Living with it is a daily thing and I will carry its aftermath until I die. What I have not been explicit about is my business being the only feasible course of action to build a career that can financially sustain me the rest of my life.

Disability, and I am disabled, has become less taboo in the past decade. But it is still a taboo. Disability is isolating and we humans are meant to live in communities. I remember the summer after I was injured I had an out patient neuropsychologist. I had been in the hospital about 30 days and during this time my surviving grandfather who I was very close to died. When I was released I was sitting with his loss and just wanting to be normal and go back to college in the fall. The neuropsychologist was to see if I was mentally equipped to do so. All I knew was that I cracked my skull open. In fact I hadn’t- mine was a closed head wound that was only discovered because the EMT who came noticed blood coming out of my right ear and knew the ramifications of that fact. This “white lie” was the first round of misinformation I received that led to 18 years of acute suffering post injury.

I saw my neuropsychologist, who I liked. The final day I got my report. I still had a very high IQ and my short term memory for number sequences was below average. He then went through my injury day by day with CT scans and MRI’s. This is how I learned that I had two epidural hematomas surgically removed, numerous clots within my brain, extremely high brain pressure which was scarily close to my low blood pressure, a transient ischemic attack or mini stroke caused by a blood clot from my central line going through a previously unknown hole in my heart that hadn’t closed. This clot dissipated within 24 hours and so it was a mini stroke. He then showed me a different colored spot on the scan and said this is a clot that didn’t go away and is permanent brain loss in your left frontal hemisphere. I remember him saying “it’s not empty space in your brain, there is still matter there that’s like jello, except it can’t receive any signals anymore. This was my final appointment with active care for the injury I had at 20. This information staggered me.

I remember telling “friends” of mine through school as I needed to share and share my own incredulity of it all. I remember one guy sat me down one night and said “Christina, people don’t want to be around you. You make them uncomfortable.” A close friend at the time said a similar thing when I asked— you talk about it too much.

The workers compensation at my college told me I was normal and so very lucky. You are recovered! You are cured! You have no side effects and as such any financial assistance is unmerited. I asked about the part of my brain I had lost. I was told “that loss has no side effects. You are normal.” And my insurance case was closed.

My college gave me a parking space in front of my dorm and semester visits with the dean of students. No one told me I was disabled and had disability rights. I had no advocate trained to help me return to classes. My family is 100% Norwegian with a stoic make it work attitude. I built walls around myself and graduated on time .01 away from a magma cum laude. The year after I stuck around and went to get health insurance. I was told I was uninsurable. This was the first I heard of pre-existing conditions. This was when I felt another level of being other.

I have never not been an artist. So I followed my art. I got accepted as a 5th year student at RISD. I then got accepted as an associate artist at the clay studio in Philadelphia. I ended up working in stained glass. Really manual labor that paid me $10 an hour. After an 8 hour shift and the 1.5 hour daily commute I would be too tired to do much of anything. I was running on steam. I spent Saturday and Sunday at the studio. I remember being told that I shouldn’t be as tired as I am. Everyone has grueling jobs.

I got accepted into Cranbrook Academy of Art and did my MFA. After I was a resident artist at Red Dirt Studio in Mt. Ranier, MD outside of DC. I was adjuncting and wanted to get a job at a museum in a registrarial capacity and sequestration hit in 2012 and the market dried up. I found myself back in the situation I was in before grad school, facing 40 hour a week low paid jobs without the energy to create the work that is my calling.

So I moved back in with my parents and was at a loss for how to find a job that could use my talents and support me at more than minimum wage. I had always done ceramic abstract sculpture and as a Hail Mary asked myself if I could put my conceptual voice on functional work. Could I make cups, bowls, pitchers that could stand sculpturally along with their daily use?

This is how and why I started MÖBIUS KERAMIKK. I bet on myself and that I would rather not earn a ton of money following my passion than not earn a ton of money working a low end job and not having the energy to create art. I am so fortunate to have talent, a network and perseverance as this dream has continued to work, adapt and grow since its inception. The pandemic forced me to move out of my studio in Charlottesville (my home town). This is when I did my second Hail Mary and moved back to Brentwood/Mt Ranier as I loved the artist community. The cost of living isn’t that much higher than Charlottesvilles.

I found my dream studio, made a body of work in 2 months, took it to a trade show and got big sales. I also found a therapist. On boarding with her when talking about my TBI she asked if a fund had been set up. When I said no her face gave it away that something was wrong. So I went on a deep dive. I got my medical records, looked up TBI aftercare, found the Brain Injury Association of Maryland, found a weekly check-in-chat and discovered that I wasn’t normal. I was disabled. That there is long term TBI, of which I suffer from the majority of. That long term TBI explained all of the trouble I had for the past 18 years— poor follow through, lazy, not able to meet the life plateaus my brother and close friends had. This knowledge was so freeing as it explained me— that all of my “issues” weren’t character defects but a medically understood ramification of brain trauma.

It was a shock to learn that I had been living with misinformation for 18 years. That I was knocking on 40 thinking “maybe this time I’ll figure it out and solve my issues and able to meet the challenges my peers do.” I learned there are disability funds that are protected. I could have had one set up for 18 years and working to invest in it as much as I could.

This was when I decided that I wanted to do whatever I could to make sure that other survivors don’t have the experience I had. It’s when I first created NeuroMaps from drawings I do while learning. These drawings help me remember information I hear since short term memory deficit is one side effect of my brain loss. I cannot wait to share more about this with you as we are planning to launch in March of this year! Spreading awareness of TBI and starting an entrepreneurial grant which will help other survivors find ways to turn their passions into part time or full time employment is so important.

The reason I am sharing so much of my story in detail is that this year has started with another trauma. I moved into a new house in DC with a friend. I am so happy with this house, its kitchen, and possibility! Sadly last Friday the man living in the basement shot and killed himself. My roommate found him Friday afternoon and our world turned upside down. The two of us spent last weekend beginning to clean up the basement and come to learn more about him including mental illness, transitional housing he’d lived in and more details of what was going on. I don’t like the term mental illness. Most of us are mentally ill in some way or another. I take prescribed anti anxiety medicine.

What has come up for me is the parallel of our stories especially in terms of isolation. It’s now ok to openly talk about being depressed or anxious and taking medicine. But when you get into more severe diagnoses, fear is often the societal response. Like my college friends telling me that talking about my traumatic injury made them uncomfortable and, as a result, there was no one I could speak openly with about what was going on- this is part of what enabled me to go 18 years without a proper diagnosis or understanding of the event that had permanently changed my brain.

It also makes me think about how flawed our health care system is and the immense power insurance companies have over us. It is scary to know something is wrong with you. It is scarier to know that you could not afford to go to a doctor as you could not afford to foot the bill, or like my downstairs neighbor, that there was no one for him to speak openly to about his mental state.

I also think about minimum wage and the wage disparities that occur in this country. It is hard being poor. It is terrifying to take a risk and to try and change the perimeters you are living within. One of the jobs I had before I became a full time artist was as an activities leader at a retirement center. (I maybe made $11/hour in 2016). I really liked working in the nursing unit where most had early stages of dementia. I was working 35 hours a week and didn’t have the physical or mental energy to go to my studio and create. I realized if I earned double the pay I could work 50% less and have more time to prioritize my art. I then found catering where I could work one day a week and earn enough to cover my expenses, taking me one step closer to a full time artist. When I moved to Maryland in 2021 and learned about long term TBI and its side effects I chose to not look for a second job and be a full time artist and business owner. It’s incredibly scary to take a leap and believe in your self worth and talent. Especially with a disability that most folks don’t know about or understand the long term effects of.

When you are different and isolated it is so hard to say and to believe that your life is important. That you are worth more than your situation. My heart goes out to this man and the situations that made him feel this was the solution. I wish the systems in this country supported people more effectively. I wish health care wasn’t controlled by insurance companies and their deep pockets. I wish that we didn’t fear things we don’t know or understand as much as we do.

I have lived and sat with trauma for more than half my life. The opposite of trauma is healing. This is what I work to explore in my art. The space between the two and the push and pull we have from disparate emotions. I am still excited about this house. I will have an upstairs studio along with a bedroom. I plan to move my paints and easel in soon and know that this experience will come through in my next body of work. Let’s all do our part to make our communities stronger, more welcoming, and support each other.