Flips page. “[K] has been resisting/refusing to verbalize when attempting to get object nearby.” Flips page. “She is usually very adamant about not participating in an activity when she doesn’t want to.” Yes, two-and-a-half-year-old me! You are a strong, independent woman. Flips page. “Participation with therapist is sometimes difficult.” What can I say? I’m stubborn. “Goal: [K] will cooperate with adult requests 80% of the time.” Okay, that is a lot to ask of three-year-old me when many adults don’t cooperate with adult requests 70% of the time. Flips page. “She tended to be a little ‘stubborn’ with the staff today by raising voice and saying ‘no play’ when asked to say ‘Please’.” Laughs. Like I said, I’m stubborn, and I know what I want.
Five years ago, I could not imagine having these reactions to the pages and pages of detailed therapy reports. Five years ago, when I first found this ominous folder of report after report about every aspect of my development up until age five, my reactions were quite different. Five years ago when I went on my search to find just one document that said when I was officially diagnosed with mild left hemiparesis and instead found two file folders full of therapy reports, medical invoices, and evaluation reports, I could not imagine that one day I would laugh off these comments and admit that these tendencies were just an immature expression of my personality now.
Opens folder.
“Parent Concerns: Not walking independently. Says just a few words.” Eyes glaze over page. “Poor coordination of eyes. Concern about depth perception.” Heart starts pounding. “Recommendations: Speech Therapy. Physical Therapy. Occupational Therapy. Ophthalmologist. Developmental Teacher.” Face becomes flush. Flips page. “Demonstrating some tactically defensive characteristics.” Flips page. “Inconsistent sound play of limited phonemes.” Flips page. “She has trouble following objects in pursuit type patterns as her eyes don’t move quite fast enough.” Flips page. “[K[ is demonstrating a 7 month delay in her fine motor skills.” Muscles tense up. Flips page. “She demonstrates a reciprocal gait pattern, but proper heel strike absent… Balance appears to be compensated as patient must adjust for decrease in dorsiflexion while in swing phase and heel strike.” Googles ‘dorsiflexion.’
When I first went through that folder five years ago, I was physically frozen while thoughts gushed in my head: How could so many things be wrong with me? Why did they have to track every little sound, movement, and gesture I made? Do I still not articulate my words correctly? Can I not see in 3-D at all?
As the days passed after I read through every single therapy report, invoice, and evaluation report, I progressively submitted to those racing thoughts. At the age of 19 I began to internalize what the therapists had reported about my development from the time I was one and a half to when I was five. Remember when I said that I hated wearing the eye patch over my right eye in 7th grade? Welp, I dug that eye patch back out and started wearing it to fix my depth perception. I began agonizing over the fact that my left eye appeared to wander outward.
Eventually these thoughts made me feel worthless and helpless. I stopped having the desire to make plans with my friends. I stopped wanting to interact with people, including my own family members. I have always loved playing games with my mom, but that summer I stopped finding the joy in playing games. I became more agitated with people. One day I snapped at my mom in DSW for the littlest reason and realized afterwards that it was not like me to get irritated with someone – especially my mom – for barely any reason. For the first couple weeks I just thought once I got back to DC, I would be back to my normal self. Since I wasn’t able to get a job that summer, I thought I just needed to get back to being busy again and I would forget all of these thoughts. Yet after almost a month, I realized that I didn’t even have a desire for going back to DC or AU anymore. At this point I started feeling a general sense of emptiness. I no longer cared if I slept at night, and I stopped having a desire to eat. Even just the process of eating sounded overwhelming.
I tried to cope with these feelings. I turned to books and read the entire Narnia Series and five of the Harry Potter books to try to escape my own thoughts. I fixated on The Fosters and watched the series three times that summer. I even bought a book called Everything Happens for a Reason to figure out why I was born with a disability. I tried to spend as much time in the sun as possible, but that didn’t help. One late afternoon I started crying for no reason as I lied on a beach chair in the sun and read my book.
During this month of feeling like my personality was gradually vacating my body, I could tell my mom knew something was wrong. She would ask me if I was feeling okay, and I would try to fake a smile and say yeah. One time when she asked me, I told her I was worried about the amount of loans that she and my dad were taking out to pay for my school, and I was considering if transferring to the University of Maryland would save money in the long run. I didn’t want to admit that something was wrong. However, after having thoughts about death a couple times, I knew I needed help whether I wanted it or not. One night I forced myself to find the courage to tell my mom that I was depressed. I was nervous the entire day. I even planned it out. I asked her to play a game with me after dinner. She said yes. After each round of the game, I kept trying to get out the words, but I couldn’t do it. Finally, after we were done playing and as we cleaned up, I got out the words: “I think I have depression.” She said she thought so too and seemed relieved that I had finally come to her about it. We then sat on the couch as I recounted how I had been feeling. She asked me if I knew why I was feeling depressed. I admitted that it was because of my disability. She responded by asking why I would be so upset by it now. I couldn’t admit that I had found my development folder. At that moment I already regretted admitting that my depression had something to do with my disability, so I simply said “I don’t know.”
The next day my mom scheduled an appointment for me to see the doctor. The day of the doctor’s appointment, I lied in bed that morning just wishing it would all end, but I reminded myself that in a few hours I would be getting the help I needed. I made a list of my symptoms in case I forgot something when I was at the doctor’s office. I had my mom come back with me to the examination room to help me feel more comfortable. The doctor asked me what my symptoms were. After I listed my symptoms, she said it sounded like I had clinical depression. Then she asked the question: “What do you think triggered it?” Unlike the conversation with my mom, I simply answered: “I don’t know.” But my mom said, “Tell her what you told me,” and I admitted that it “might be my disability.” Then the doctor asked us some questions about my disability and my mom explained that I’ve had it since I was born. They questioned why it was affecting me emotionally now. Again, I responded: “I don’t know.” The doctor wrote me a prescription for an antidepressant, and suggested I see a therapist once I was back at school. She said I would start feeling better by the end of the week.
The antidepressants at least seemed to make me feel less numb, and by this point I was only a few weeks away from going back to AU. I had something to try to look forward to, and I tried to focus on being back with my college friends.
As I write this post, I’m a couple days away from seeing the doctor about recurring pain that I’ve been having in my left leg for the past 7 months. Since January, I’ve been anxious to get answers about what could be causing the pain. I originally planned on seeing my previous doctor who has been great with checking on issues related to my spastic hemiparesis in South Bend over spring break, but since that was towards the start of the spread of coronavirus in Indiana, I was scared to make an appointment. Now I’m going to my new doctor in Maryland, and I’m nervous. While I want answers, I’m scared of what those answers will be.
During that summer nearly five years ago, when I thought I needed to and could fix my depth perception, I told my optometrist that I was worried about my left eye turning outward and I was worried that it was affecting my depth perception. He told me that while it was turning out a little bit, any surgery would simply be cosmetic and may worsen my vision. That was not the answer I was hoping to hear. I then found out that while he was examining my mom in another room, he told her that my eye was not turning out. I was shook. He lied to me. Me. Who had always hated going to the eye doctor and refused to admit that anything was wrong with my eyesight. Me. Who after 19 years had finally admitted that something was wrong with my eyes and was advocating for myself. He didn’t take my concerns seriously.
So today that leaves me scared. Will the doctor take my concerns seriously? Will she believe me? Then I think of how reading those therapy reports made me feel five years ago and the downward spiral that caused. What if it is something major? What if she refers me to physical therapy? What if I must have surgery? How will I react to that in the short term? In the long term?
“The thing about having a mental breakdown is that no matter how obvious it is that you’re having one, it is somehow not obvious to you. I’m fine, you think. So what if I watched TV for twenty-four straight hours yesterday. I’m not falling apart. I’m just lazy. Why it’s better to think yourself lazy than think yourself in distress, I’m not sure. But it was better. More than better: it was vital.”
― Tara Westover, Educated
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