What happens when you lose control of your mind: Letting go of stigma & shame
Mental health and declining cognitive function is often stigmatized — a source of shame, fear, and secrecy. Prior to my father’s seizure and metastatic cancer diagnosis, he was exhibiting signs of declined mental acuity for quite some time. I definitely saw small signs of decreased cognitive function but I tried so hard to ignore them. I felt internalized shame and fear — I thought to myself on occasion, “surely my father isn’t losing his mind?” as that might indicate I was also at an increased likelihood for a genetic predisposition to some awful neurodegenerative condition. Unbeknownst to me at the time, he didn’t have dementia — he had metastatic “salt and pepper cancer lesions sprinkled throughout his brain”, in the words of his neuro-oncologist.
My dad always loved to create things. He was creative and hard-working and was always working on side projects around the house and helping friends with home renovations. When his heart condition prevented him from being able to have a job, he was always itching to undertake a small project at his own pace. Menards (for my non-Midwesterners, this is basically Home Depot on steroids) was his go-to store. He’d make trips to hardware stores at least once a week, seeking comfort in the plethora of tools they had to offer that he could rummage through and plan his future creations.
Two weeks prior to his seizure, my father went to his favorite hardware stores and racked up a few thousand dollars in credit card debt. To a stranger, his purchases would have seemed like the most random assortment of items. He bought everything from tools to mugs, t-shirts to drill bits, bird-houses and feeders to gardening gloves. During my first visit home when he was still in the hospital recovering from the seizure, I unpacked each item and tried to rationalize why he felt compelled to purchase these specific items. What made him want three plastic hummingbird feeders? Why did he think we’d ever need five bright-orange screwdrivers? My family encouraged me to stop trying to rationalize what we then knew was a compromised mental state but I wanted to understand what was going through his mind. I didn’t know if he’d make it out alive and I wanted to know what he was thinking of during his last trip to his beloved Menards.
I placed each of the items on the floor of my childhood bedroom. A few items jumped out at me:
Hummingbird feeders and bird-houses.
My dad and I bonded over our love for animals. He was so excited to get a new dog and he loved my stories detailing my ornithology excursions. My fondest childhood memories revolved around fishing trips and bird-watching adventures on Lake Michigan. I like to think he purchased these to relive those moments or his subconscious just had an inkling for the past.
Gardening gloves.
My mom had a pair of brightly colored gardening gloves that our dog chewed up. My dad purchased six pairs of similar gardening gloves — did he remember?
Menards mugs and t-shirts.
Whenever I returned home from Cornell or postgraduate life in Boston, I would bring my parents a little souvenir. My father loved baseball caps and branded t-shirts, so I often purchased him signature “Cornell DAD” attire. He’d proudly wear the apparel the next day.
I contemplated keeping the items but the thought of being constantly reminded of the horrible circumstances prompted me to drive to our local Menards and ask for a refund. I didn’t really care about getting the money back, I just wanted to get rid of the reminders. I stocked two carts full of my father’s purchases and wheeled them into the store. At first glance, the cashier gave me a dirty look and then demanded to know why I was returning a hoard of items. It took everything I had to not cry from embarrassment. I was terrified of her judgement and everyone who was now staring directly at me. In a hushed voice, I explained the situation. My faith in humanity was restored, as she quickly nodded and called over three other employees to assist the return, no questions asked.
When I drove back home, I thought about the interaction that had transpired. I wanted to block it out of my memory. I felt shame and embarrassment. I couldn’t help but feel anger towards my father for putting me in this situation. It took me days to stop feeling ashamed and acknowledge that what happened was normal, given the circumstances. My dad had lost control of his ability to think rationally — it happens to many individuals. We shouldn’t feel ashamed for mental health issues and loss of mental acuity.
When my father returned home from the hospital, I wanted to ask him about the purchases. I really wanted to rationalize why he felt compelled to buy these specific items in bulk quantities. I never got around to asking him because I realized I did not need an answer, as much as I wanted one. He is in a different world, mentally, and I have to make peace with never knowing. I believe that mental health and loss of cognitive function are so heavily stigmatized because as humans we’re trained to fear the unknown and we want to rationalize actions. We don’t really know what an individual who is cognitively impaired is thinking, and for individuals who drift in and out of lucid thinking, we don’t really know how much they’re comprehending.
We fear and dismiss the unknown. There are times when we need to make peace with not knowing.
