Donna Kivanc woke up at two in the morning with a feeling of moistness on her face. Preferring to sleep on her stomach, the right side of her body lay splayed disjointedly against her bed while the other half was exposed to the cool air of her downtown Hamilton apartment. Upon trying to get up, she realized that she couldn't manage to pull herself from where she laid. As panic started to creep in, she came to a dark realization: the wetness that coated her face was not sweat nor leakage from her water bed. It was a drool.
Spontaneously, at the age of 26, my mother was paralyzed.
After spending a grueling hour crawling out from her loft and downstairs to the front door of her building, my mother used the working half of her body to drag herself down the dirty pavement of Hunter St. in hopes that somebody would find her. Plenty of cars and people passed by in the early hours of the morning until an ambulance spotted her and rushed her to Hamilton General. There, after an MRI disqualified a stroke, doctors asked her to explain to them what had happened prior to them finding her lying helpless in the middle of an intersection.
My mom, unable to speak or move half of her body, used her remaining functions to brokenly scribble a note on a post-it: "Went to bed fine. Woke up like this." The medical team, confused, left the room and returned an hour later. It's then that my mom learned she suffered from a rare brain deformity called Chiari malformation and that it was unlikely she would ever walk again.
Sometimes referred to as Arnold-Chiari syndrome or more simply as Chiari, the condition that befell my mother is one in which a defect in the lower-back part the skull causes the cerebellum to squish toward the spine, thus causing increased pressure both in the brain and on the spinal cord. Since the cerebellum controls movement and coordination, and the spine is responsible for delivering the signals for basically everything else, the syndrome, while not always fatal, is essentially a one-two punch for permanent disability if left untreated.
After spending a month in the hospital, my mom was able to leave, but it would take multiple years of physical therapy and soul-searching before she was able to both come to terms and live with her condition. Even while typing this, I'm aware that my casual use of the word "mother" is something that at one point wasn't guaranteed either. During her recovery, my mom was advised to look into surrogacy due to the high risk of complications or even death during the birthing process for Chiari suffers. Today, she bares an 11-inch c-section scar as a snub to the disease...
Now in her 50s, my mother walks with her own two feet and spends most of the day hustling on them in the service industry. Although you may not know it immediately by looking at her, some signs of the incident some 25 years ago still remain: her resting facial expression is slightly uneven, her spacial awareness often leads her careening into the corners of walls and tables, and more recently, she's told me that the pressure inside her skull that she used to feel in her 20s has begun to return.
Despite her doctor's insistence for her to do so, my mother never had an operation done to help relieve the symptoms in fear that it might not have worked and may have actually made things worse. The main type of surgery used to combat the malformation, called posterior fossa decompression, is an incredibly tricky and risky process involving the removal of a postage stamp-sized section of the skull in order to help relieve pressure from the cerebellum and allow it to adjust back into place. Hopefully, at least: while 80 percent of patients notice some form of relief, more than half complain of returning symptoms or no change at all. Smaller percentages report worsening and even permanent paralysis.
My interest in the disease piqued recently when a throbbing behind my right eye and in the back of my head became increasingly hard to ignore. I noticed it originally last year when working in a pizzeria, which, as you can imagine, was a highly-shitty place to work and caused me a great deal of stress. Add an angry manager and a stuffy, smelly kitchen to the mix, and you have cause for a physically-debilitating level of said stress, so much so that I was being watched by doctors for a possible aneurysm. Fortunately for my brain, I quit that job before university and got sidetracked with living in a new city. Thus, my pursuit for an MRI went on the back-burner -- until now.
Knowing all this now, it's fascinating to look back on my life and plot all the intersections where my mom and I seemed to be alike in ways my dad couldn't understand. The constant bruises on our shins, elbows and shoulders from clipping objects as we walk by them or standing up only to trip over a chair leg. The way we both know exactly what each other is talking about when we talk about "real headaches."
Now, I patiently wait on a list nine months long in order to see if I drew the short end of the stick. It's both comforting and frightening to know that, no matter the outcome, it's completely out of my control, and in a way I'm okay with that. I like to believe that adversities in life either become your identity or give you a reason to forge one, and if my mom's story has any meaning, it's that the latter is certainly possible.
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