A glimpse of acronyms intended to make sense of my injuries, diagnoses and complications along the way.
The Complexity of my TBI in Common Language to Provide Insight and Relatability
ER, TBI, MRI, IC , 44, PT, OT, PTSD, EKG, BMI, ED, YYZ, COL, AN,ERC, PCA, AFRID, ACUTE, CNA, ERC, EDCD, IOP and OP – a glimpse of the acronyms along my recovery journey. The following is intended to make sense of my injuries, diagnoses and complications along the way.
Cerebrocranial Trauma and Orbital Fractures
My skull was fractured; simply the right side of my head and the eye socket were broken. The swelling and bruising that resulted made for a colourful, unrecognizable me.
Vision Loss: Ptosis, Paresis of Upgaze
As a result of the blow to my head, nerve and muscle damage to the oculomotor nerve resulted in drooping of the eyelid. Both eyes have been affected though far less noticeable on the left side. The impact left lesions to midbrain area responsible for vertical movement of the eye meaning my right eyelid does not open thus I appear as though I am permanently winking. Further, I am unable to control eye movement or to raise my left eye above midline. Though the left is less severe, I have to lift my head to see above the horizontal access. Consequently, I am unaware of objects, trails and people on my right. I am startled easily and quick to internally spiral into negative thoughts and frustration when this happens. This is a specific area that I am working on and know that with continued support, time and effort will improve as I know it does not bring out the best in me.
My left eye struggles to focus, has limited range of motion. In order to have accurate depth perception, you must have binocular vision. Because my eyesight comes solely from a limited range within my left eye, I am forced to rely on other visual cues to gauge depth. As a result, my depth perception is less accurate. Determining distances between objects and the ability to tell if something is near or far away is helpful in trail running. Camouflaged roots and rocks, stumps and stones make trail running exciting yet in my case often more bloody. My brain has adapted, as has my patience and frustration levels, yet slopes of shale and scree around the globe have taken the best skin from my knees.
Cognitive Change
Complications from short-term memory loss, organizing, problem solving, attention, anxiety to appetite loss all have led to hundreds of hours with Occupational Therapists, Speech and Language Pathologists, Psychologists and other specialists to develop a better quality of life post TBI. Social situations are beyond my comfort zone. Crowds, chaos, and loud sounds quickly overload my brain.
Avoidant/Restrictive Food Intake Disorder (ARFID)
Based on my past negative experience with the food following the initial accident, when nausea set in as I lay listless, I was diagnosed with Avoidant/Restrictive Food Intake Disorder. An aversion to all foods associated with that time of trauma along with a severe loss of appetite resulted in life threatening complications. Dependent on a nasogastric then a gastro-jejunal feeding tube, months of intensive treatment, therapy and a team of world renowned medical experts collectively provided life saving medical stabilization, weight restoration and got me safely back on my feet.
It would be easy to focus all on that has been lost as a by-product of my accident: vision, appetite, sense of self, confidence, trust, independence, flexible thinking, patience, relationships, career, German residency, material things (e.g. apartment, car, driver’s licence), etc. however, I aim to stay mindful of that which I have gained including new perspective, gratitude and vision for a meaningful future. No longer having to gaze at the Rockies from a hospital bed, I am embracing the life I nearly lost, one mountain at a time.