rodeokitchen

Ok, so they are actually called Parkwood Points and it’s my newly discovered road-map to recovery. St. Joseph’s Hospital London designed this tool as the clinical guideline for brain related care. Where the Glasgow coma scale ends, Parkwood begins. It is a journal based system used to track quantitative information from qualitative data, triggers and stims. Every week, a concrete number of points is assigned by my physical therapist. Positive points are given to stressors, negative points are things that reduce stress. Pain = Stress. The goal is to stay out of the Neurofatigue ‘Danger Zone’. Neurofatigue, while known to be fatal, is often referred to as “victim mentality” or “sissy pants crybaby syndrome”. Neurofatigue, It’s literally not even in the spellcheck dictionary.

Each morning, I start the day by giving my discomfort level a number. I must be mindful of the previous day’s ending point total. My schedule is adjusted as necessary to respect the daily values assigned by my PT. Ideally, no single task will be more than 2 points or the activity needs to be broken down into chunks. Realistically, I can only do 15 min of screen time every hour. Listening tasks are the most stressful; phone calls to strangers have a limit of 30 min per day and never first thing on the morning. Using this equation helps me remain present and accountable for my behavior. Checking in with my body, and ‘Barry’ consistently throughout the day empowers me to make the right choices before I tip into the ‘Danger Zone’.

(I will introduce Barry later, he’s my TBI and he deserves his own blog post).

I aim for zero points. Yet, no one is quite sure if I have ever been at zero. Doc said I have been living in the proverbial ‘Danger Zone’ for too long. “Fifteen points a day MAX for the next two weeks, we’ve got to get you back on track” she says. It’s possible I was rolling with a solid 65 a day. What does it feel like to NOT be in pain? Does my body even know? Has it ever known? I sing the line of a 90’s country song to lighten the mood “How Do I get there……… from here?”

All Good Questions. There are doctors and friends and doctor friends I check in with along the way. I promised them I would document my journey. At one time my recovery was considered a medical miracle. Two years in, summer 2019, I seemed to be progressing at an excellent speed. My asthma and reoccurring pneumonia were finally under control, so the doctors weren’t feeling like any of my concerns were acute. That dang brain needs oxygen to heal, and I wasn’t getting nearly enough through wildfires’ smoke. I relaxed my mission to find a neurologist and speech therapist. Nearly all of my therapy was self taught, and it was certainly self directed. I tried homeopathic and alternative diets, continually aware of the 3 and 5 year bench marks for recovery. I was tired and sore, but running my own small business, who isn’t? My eyesight was still a bit wonky, so I patiently waited my turn on the waiting list of a nationally acclaimed neuro-ophthalmologist in Northern California.

Fast forward to today, December 2020…Surprise!! Extreme Regression.

None of us understood the level of pain I have been experiencing. When you have a neurological injury, mental and physical anguish is combined. It’s not entirely possible to separate that chicken from it’s egg. No one knows who came first. The brain is designed to protect it’s human. The more intelligent a person is, the more drastically a brain will mask symptoms. I’m over here acting like a crazy grandma; all I know is every thing is too loud, bright and fast. Meanwhile, my head feels like the ear was impounded 3 days ago with a hot branding iron, still jack-hammering into the hole, slowly twisting and pulling each hair out by the roots.

“it’s fine. everything’s fine. yup, a.ok. fine”….

Undoubtedly, the most difficult lesson to learn is that a brain will turn off pain just like morphine. Known as disassociation, it is very dangerous when not currently experiencing a true emergency. At it’s best, singing along with my favorite songs helps me work through a headache. At it’s worst, the chore of making executive decisions based on survival at a cellular level. My brain will always choose to keep my heart beating, even over the ability to swallow. My body requires oxygen to survive, this is the brain’s top priority. So here I am, constantly evaluating what will keep me alive in real time.

Let’s talk about ‘Jesus taking the wheel”. Fight or flight took over and saved my life when I was in a car accident Spring 2017. Everyone has heard the story of “so and so” who lifted a car all by themselves to rescue the person trapped underneath. Pure adrenaline saves the day with superhuman strength in the time of need. For me, this phenomena occurred when my body was able to pull itself out of my mangled car after it went airborne. In fact, it was all so surreal, the police and EMT’s believed I was the passenger of a drunk driver who fled the scene.

When I came to, I was pushing hard on my chin to hold my airway open. I could feel my right arm stretched out over my head, turning the key, cranking the engine with incredible force. When I opened my eyes I realized I was UNDER the steering wheel, my right knee pinned to my chest, head resting on the stick shift, seat-belt intact. The timeline on my cell phone shows I called 911 nearly an hour and a half after leaving my hotel that morning. Yet, the hotel was less than one mile from the site of the accident. There is no real explanation for what happened. I believe I was unconscious for over 25 min. It’s difficult to imagine that I was walking around by myself, in and out of consciousness for close to an hour on the side of I-10 .

In the Hospital, I refused pain medicine. I asked “what do I need to do to get out of here?” I welcomed the feeling of pain coming in. It turned me on in every kind of way. It was itchy and tingly, any sensation meant I was alive. I did not feel connected to my body, whatsoever. In the beginning, I could not tell the difference between dreams and reality, very much believing my state of lucidity was the afterlife. For months, I told the doctors I felt like I was watching someone else do all the things. It seems odd to to most, why I still prefer to deal with the constant pain than indulge in pharmaceuticals. Crippling withdrawals are not worth a temporary melancholic relief. I want to manage my pain, not pretend I’m cured while my mind slowly disintegrates.

Not so big reveal: Brain Injuries are bull honky horse shit and it’s incredibly hard to deal with, FOR EVERYONE INVOLVED. There are blissful, childlike, beautiful silver lining moments; like snow falling on my face for seemingly the first time. Generally speaking though, it’s a lot of stinky caca. It’s hard to keep my head up, mentally and physically because the small muscles in my neck are the most damaged. It’s often humiliating, degrading and terrifying. There is an unwelcome amount of not being able to communicate or express yourself appropriately, mixed with a heart breaking amount of disbelief. It isolates you from your friends, family and career. I have not been able to use my words, my own vernacular since my accident. I also have not been able to read a book. Currently, I have lost the guaranteed use of my arms, hands, legs, and left eye. They don’t always work on command. I try not to talk, read, or stand while I eat or shortly after eating for fear of choking or confusing my heart.

Some regression is expected as the body and mind relearn how to store and retrieve information. Recently the change seems dramatic and it’s rapidly deteriorating my quality of life. Weekly physical therapy, reduced driving, no alcohol or sugar have helped some but not enough. The new team advised we start over from day one after my car accident. Apparently, I have never allowed fight or flight to let go of my nervous system. No one can legally confirm if there is an additional physiological concern. Any suspected tumor, bleed, clot, lesion or cyst can not be diagnosed without the cooperation of the healthcare conglomerate. Best case scenario, it’s a wicked migraine. The outliers -a negative reaction to an asthma medicine, the pneumonia vaccine, or even the covid 19.

A stream of irony and divine intervention.

Today an MRI is (finally) scheduled, 402 days since the ‘big shakers’ started. Yes, I’m scared this is my version of the mean pinks. It’s been a paperwork and red tape nightmare. Transferred to 6 different primary care physicians in 3 years, none of which had less than a 9 month waiting list. My records have been lost, or keyed incorrectly countless times by multiple facilities. Fires, Floods, Road Closures and Power Outages are common in California; Basically like a low key Armageddon preventing any timely form of a reliable professional care plan. Then Covid 19 roared it’s spiked and ugly head- more appointments were cancelled. I have never had any follow up care documented from the car accident. I have a new team now, advocates and therapists and specialists who know I am doing my best and I need help. I need the right help now. I guess this means I get a do over? The 99th time is a charm. Practice makes perfect. Today is Thursday, December 10, 2020. My choice is to listen, breathe, and accept this healing opportunity.