“In my 30 years of practice, I have never seen anything like this before. I think it’s all in your head.”
This was a psychiatrist’s explanation of what was going on in my brain while I sat in front of him, literally speechless.
I had come to the personal, and uninformed, conclusion that I had a brain tumor destroying my frontal lobe. I was experiencing difficulties remembering, processing information and speaking in ways I had only witnessed in people affected by Alzheimer’s or a traumatic brain injury.
Here I was explaining — or trying to, at least — symptoms no one could understand. This wasn’t the first time I’ve found myself in this position. So instead of relying on professional answers, I came up with a conclusion of my own: either I was dying or my brain was broken.
After a few months, I finally found a neurologist who was my saving grace and who diagnosed me with functional neurological disorder (FND). In short, FND is caused by a disruption in how the nervous system sends and receives signals. While the symptoms resemble those seen in structural or degenerative neurological conditions, there is no structural damage or cause. Instead, the body and brain become controlled by a hijacked nervous system. The progression of the disorder is rapid and the causes are multifactorial. It has been previously referred to as conversion disorder, so it is presented with physical symptoms that have a psychological root. FND also varies across patients: It can cause a disruption in speech, motor movements, sensory processes or cognitive functioning, chronic pain, seizures, paralysis and more.
The comfort of knowing what it was quickly faded when I discovered there is no cure, no physical origin, no specific cause and no standard treatment. I couldn’t make sense of my thoughts, let alone my words. Again, I was left speechless. Another label to simplify my identity; another diagnosis to make sense of my pain.
Will I ever be able to speak, interact and function like I used to?
What would a life look like with a “damaged” brain?
How am I going to live without a brain that makes me, me?
But really, how much pain can I endure before I give up?
My response to pain is similar to my response to scary movies, so my coping mechanism is pretty reliable: avoid at all costs.
We are conditioned to create a “pain-free” life, so we construct black and white rules to lead us there. We follow a rigid path to fit the ideal mold: pretty Instagram pictures, perfect GPAs, socially accepted identities, special talents, high salaries and enviable social status. We reject our own pain and judge how others experience theirs. We avoid understanding what pain has to teach us because we can’t bear letting go of the controlled life we aspire to have, the life we have been taught to aspire to — one that comes with shining moments, numbers and titles. Aspiring to a beautiful life has been replaced by crafting a perfect one. Pride is usually entrenched in this way of living because we are covering up this truth: Perfection doesn’t exist, so we are also afraid of this truth: Pain is inevitable. We keep our pride and pretend instead. Our pride pushes us away from others, but our pain brings us to them. Most tragically, pride and an obsessive desire for control keeps us from having a relationship with ourselves.
I am recovering from that way of life. Control seemed like my path to happiness and “success” (whatever that meant). Then I met deep, horrible pain. The kind of pain that quite literally robbed me of a functioning mind and stopped me from living. It kidnapped me from the path of stability I strived so hard for. Instability has followed me throughout college, having had an intense battle with personal demons and mental illness, leaving me, more often than not, preoccupied by how I can disappear forever.
When did I become so averse to sifting through pain and seeing what it has to teach me? In the moments of intense despair, I was most afraid of how I was going to live through it. I thought pain wasn’t there to teach me anything; it was just an unwelcome interruption to who I was supposed to become. So I coped by replacing my pain with shame and covering myself in it. For me this was followed by my battle with suicidal ideations — a default I hadn’t learned to reset.
Writing now from a place of stability that I never imagined knowing, I understand that so many of those demons grew from a fear of pain. I wanted rescue from an inevitable human experienc; however, rescue was not what I got. I submerged deeper into the fear and pain with the assumption I would never leave, but instead, I rose. Pain and rising are a cause and effect relationship; I cannot experience one without the other. I lived in the deep, horrible pain, which in turn gave me the strength to rise. I rose to a perspective of gratitude and a season of healing. The pain did not kill me and neither did my fear of it.
I got to know that my demons and pain had both nothing and everything to do with who I am. Pain is born from wars we willingly wage and ones that erupt without our consent, but we have to move through both if we want to learn how to rise. I did not “get better,” or return to a “pre-illness” state. Instead, I came to a revelation that my stigmatized demons are also my superpowers.
Pain opened my door to healing.
Pain introduced me to resilience.
Pain taught me about human connection.
Pain gave me purpose.
Pain set me free.
Pain let me rise.
I am no expert on suffering, as I, at 22, am only speaking from my experiences. I want to continue learning more about others’ individual pain, so I can learn how to be a better friend, sister and ally. Stepping into someone else’s pain is the most powerful way to communicate love and respect. It shows them you see the whole picture and choose to support their lows just as you would their highs. We all deserve an ally who can brace our fall and encourage our rise. The challenge will be to not let their pain scare us. We are all scared enough of our own pain, so the best way to support someone else is to help take fear out of the equation. Be the voice that reminds them they will survive the fall and one day will also rejoice in the rising. This process is hard and the timeline is unknown, but, in order for it to work, we all need that unconditional, unwavering ally.
I do not know what my future holds or what pain I might encounter, but I will continue to use my voice as my superpower. I could experience a relapse of my mental illness and return to that darkness. I could also lose my speech and face the other symptoms my functional neurological disorder causes. However, it is just as likely that neither of these things will happen. Either way, I will survive.
I have survived that darkness before and I can survive it again. I know that pain is constructive and shame is destructive, so I can finally reject judgement from myself and others. I live honestly now from the inside out and speak my truth without apology. I no longer abandon myself or my personal needs. And most of all, I know how to rise.
Statement Contributor Annika Severson can be reached at annikase@umich.edu.