Sunglasses in the supermarket
Updated: May 30, 2019
The night before the car accident I watched the movie "90 minutes in Heaven" based on the book by Don Piper, about his car accident, death and resuscitation. I had to drop my daughter at school the next morning, and as I was parked at the traffic light, a gust of wind shook the lights that dangled from a pole that hung over the traffic.
I thought, "Anything could happen to any of us at any moment. The wind could blow that traffic light off the pole and it could fall through my windscreen and kill me."
It was a strange thought. It felt like a calm acceptance of the transience of this life, but also a premonition to be careful. The light changed to green and I drove under a railway bridge, merging like a zip as the two lanes converged into one. All the while I said the Lord's Prayer in my mind. I slowed down for the next light and as I drew to a halt, I felt an immense impact from behind.
The sound of crunching metal was awful. I thought I had been hit by an industrial lorry. My head shot forward and backwards - perhaps a couple of times - I don't remember. I looked in my rear mirror and saw that I had been rear ended. I felt an incredible sense of peace. Perhaps it was because I had literally been praying when it happened. It felt as if I was in the movie I had watched the night before - and I know my accident was nothing like that of Don Piper's... but there was a feeling of acceptance. A feeling that the Lord was with me. I felt super aware and spiritual in that moment.
A woman got out of the car in front of me and asked me if I was okay. I said, "Yes. But I think I am going to have bad whiplash." Then I got out of the car and walked to the car behind me. The woman had injured her knee on her dashboard. She was visibly shaken and upset. She told me that the car behind had shunted into her. I walked to the car behind her. The front bonnet was smashed in. The man in the car looked disoriented. I started to tell him to drive to the car park across the road so we could all exchange numbers. He said his car was too badly damaged to drive. The efficient woman, from the car in front of me, took charge. She instructed me to get back into the car so that I could remain safe. She was heroic. She managed to call the police, comfort us and halt traffic, while her child sat patiently in the car in front of me.
I was confused and tried to give my police report to a St John's Ambulance driver. The police arrived and interviewed us. It turns out that the perpetrator of the accident had fallen asleep at the wheel. I was surprised that I held no animosity towards him. In fact I felt sorry for him. He was apparently on a suspended license, had no insurance, and had been working a night shift. Even if that was his story - even if he was texting while driving, or under the influence of a substance - I felt no anger towards him.
In the parked ambulance, they took my blood pressure. It was high. But I felt calm. I was starting to feel rather strange, so I decided to get myself to the White Cross straight away. I probably shouldn't have driven. I was there for three hours. I dozed in the waiting room. I felt dazed.
I asked the doctor to check me for whiplash. He offered me an x-ray, but said that he doubted that anything would show up as he didn't think I had cracked any of my vertebrae. I agreed that it was probably not needed, as my neck was not that sore, just stiff.
I wonder to this day why he didn't talk to me about concussion. I drove home and lay on the couch for the rest of the day, mindlessly watching Netflix and napping. That night I said to my hubby, "I'm going to set an alarm for myself. I feel like I might never wake up." I awoke at 3.30 am to the alarm, and went back to sleep.
At work the next day I felt completely disassociated from the world. I was talking to people, staring at my computer screen, trying to get by, but feeling as if something major had happened to me, and wondering why nobody noticed. There was a barrier between me and reality.
The next day was our last day at school before the holidays. It went by in a blur.
During the holidays, in a car trip to my parents' house, I became overcome with terror. My husband couldn't understand why I was back seat driving. I sat, rigid with fear as oncoming traffic on a single lane road raced toward and past us. It was worse after dark. The lights of the cars burnt into my retinas. I couldn't bear it, and put my sunglasses on. I was short with the kids. Something wasn't right. I wondered if I was just anxious after being in an accident recently.
Back home, I tried to work on "Saving Thandi", my second book. It was almost finished and I wanted to work on the edits that my beta readers had suggested. It was slow going, but I pushed myself. The steel door descended on my frontal cortex.
At that time, I believed that I needed to write and publish a number of books in quick succession in order to succeed in the self-publishing world. Many writers of popular genres like paranormal romance - have built up fan bases who expect the next book in the sequel pronto. I was in an ambitious season - wanting to become a world renowned children's book author, like Michael Morpurgo, Kate DiCamillo or Des Hunt. Before the accident, I had a burning desire to write and promote my writing. But that was all to change, dramatically.
Back at school, where I work as a school librarian, the headaches started. Nasty headaches that weren't relieved by analgesics. The children seemed so noisy, and the overhead lights were blinding. Sometimes my head would spin from left bottom, up and down to right bottom, in an egg shaped oval.
To avoid the classroom noise, I tried to get cracking with data entry. I sat staring at the computer, trying to add $5 to $8. I felt like I had a slow processing unit. My brain needed to process things slowly. Tick, tick, tick ... A grey fog descended in my forehead - like a steel wall had come down over my frontal lobe and was blocking information from coming or going. Inside was an empty vault. Also, everything was blurry.
After a week of headaches, noise sensitivity, light sensitivity and dizziness, I went to the doctor. She diagnosed me with Post Concussion Syndrome. I said, "Are you sure... because the headaches could be hormonal. I might be peri-menopausal, and I also have Hashimoto's Thyroiditis, so maybe some of the other symptoms are because of that..."
I struggled to walk in a straight line and had to speak really slowly, often struggling to articulate. The doctor booked me off work for a week to rest.
I felt mortified. What would people think at work? A whole week off? And I hadn't even banged my head. I didn't understand how I could have Post Concussion Syndrome. However, I took her advice and tried to rest my brain. How I would have loved time off to write when I was trying to juggle work, family and church. Now I had time off, but my brain was bruised. It wasn't even tempting to write. And even if it was, that would be unethical. Most times I couldn't even bear to look at a screen for more than a few minutes. Ironic. Just like life.
I spent most of that week in bed, resting. Occasionally I listened to audiobooks. Joni Erickson Tada and Connie Ten Boom soothed me and gave me a humble perspective. My suffering was minimal. At times I felt peaceful, other times I couldn't believe the vacuousness of my mind. There were days where I hoped for visitors. A few people popped in over the following weeks, but many friends possibly thought I needed space. Or they didn't understand how brain bruised I was and how isolating it feels. There are only so many hours one can lie quietly, alone, in the comforting dark, without beginning to feel seriously isolated. Sometimes the audiobooks lulled me to sleep.
Once, I got a beautiful picture in my head whilst in prayer. I was in a cocoon, with God. It was dark, and so healing. I would need to be in there. To rest and recover - and He was with me. I told my counselor friend and she shared a beautiful picture she had drawn in her journal once, when she too was in a cocoon. I showed my Mum. She thought it looked dark and depressing, but in fact, when you have a brain trauma, darkness is soothing and light and sound are jarring.
Now I don't remember the pattern after this first week, but it was a dance between me and my lovely doctor, with me saying - "I need to get back to work. I feel anxious about what people think of me..." and her suggesting I go in for reduced hours and see how it goes. Then I would go in, and try to cope.
One day the noise of the children was so overwhelming that I got completely dizzy. My vision was blurred and I had to get away. I've learnt in retrospect that is called ""flooding". It is the injured brain's inability to filter out stimuli.
I decided to take my paper to the recycling across the school yard. It was a bright, sunny day and I immediately regretted not taking my sunglasses. The sound of distant birds and truck engines - miles away bombarded my senses. I wondered if my hearing had somehow been turned up. It was like having super-hearing - and it wasn't a good thing. I went into the Principal's office and cried. She was kind and understanding, but I was finding it hard to accept that I needed to listen to my brain and rest as required. Back at the doctors, I was given more time off work.
Soon I was contacted by an Occupational Therapist. She set the wheels in motion for me to receive Physiotherapy, Neurophysio and a visit to a Rehabilitation Medicine Neurologist. When he told me I had a mild concussion, I was furious. I called my OT and she explained that although I had a whole raft of very real symptoms, compared to some brain injuries, it was mild. He wanted to put me on Amitriptyline and I stubbornly refused. Instead, I cooked bone broth, rested, prayed, and leaned heavily on my two angels - my OT and Neurophysio.
The first time the Neurophysio visited me, she noticed my eyes were jumping as they tried to follow a moving letter. I struggled to balance with eyes closed which meant my vestibular system was struggling. I told her about my blurry vision and she sent me to get my eyes checked. I needed glasses at least +1 stronger on each side. I suspected the accident had caused this sudden decline in vision. When I am tired, my left eye still gets very blurry. That is an indication for me to stop what I am doing and do something else. Or rest, if possible.
After many months of eye exercises and balance exercises, the Neurophysio said she would not need to see me anymore. I had been receiving much healing prayer at church, and she felt like my recovery was miraculous. When she said goodbye, I cried. Something about receiving help when feeling vulnerable and mentally impaired made me dependent on her. She was so kind.
I was also dependent on my husband in so many ways. I still am. At night I would wrap my arms around him, like a Koala, and not let go! If I held on to his solid form, I would not float away on the clouds like a wisp of smoke.
My mind was a fog, but he was a the trunk of an ancient tree.
Saying goodbye to my Neurophysio was not the end for me. An old foe (one that I had muted by going gluten and dairy free about nine years ago), reared it's ugly head with a vengeance. Peripheral neuropathy. Although I don't know why it's called "peripheral"... When I get pin pricks, they are in the eyes, hands, legs, feet, stomach, ovaries, scull, inner ear... pretty much anywhere. It is like having pins pricking into one, randomly - and it mostly happens when you are lying down trying to sleep.
After many months, and longer hours at work, a new symptom appeared... I described it to my doctor as "funny leg". As I lay in bed at night, trying to get much needed healing rest, my leg would twitch, and feel restless. Sometimes my joints ached and calf muscles cramped up. I constantly tossed and turned and could not sleep. After battling to fall asleep, I would awake around 4.30 am like clockwork. I started taking magnesium and stretching as per my doctor's suggestion. It didn't help.
My OT said I was spiraling downwards. I knew I needed to do something. I agreed to take Amitriptyline and see a Psychologist. I was put on a low dose. Only 10mg. I did not expect it to work straight away, but honestly, the first day I took the little blue pill, I went to sleep pain and pin-prick free. There were side effects though. Bloating, constipation, a dry mouth, urinary problems, worsened tinnitus, and weight gain. It might sound as if the side-effects are not worth the relief, but honestly, there is nothing like a pain free night.
Rain Rain App for Tinnitus
Another tool that helped me from day one, was the Rain Rain app. I play it every night to help me block out the tinnitus. At first I used Rain on a Tent, but now I prefer Brown Noise. It really does help.
I felt reluctant to see a Psychologist, because I felt like prayer and acceptance were working for me. I only went twice, and she began to look at my values. It turned out that my life is well balanced and she did not have concerns in that area. She reminded me of the usefulness of deep breathing. I use that often.
My physiotherapist is helping with posture and habits that are exacerbating the whiplash injury. My neck often feels stiff and sore, and that may take some time to fully heal.
The Post Concussion Syndrome Facebook page helped me to realise that there are many people going through similar, or worse symptoms. Walking through the butchery and feeling overwhelmed by the noises, or wearing sunglasses and earplugs in the supermarket, is "normal".
Coming home from work and pulling the curtains shut, lying on the bed with a face mask and Rain app on, and blocking out sensory stimulation, is "normal", for someone with a traumatic brain injury.
As time went by, I began to accept that the front of my brain had hit the front skull, and the back of my brain had hit the rear skull, causing damage. My first physio said my brain had been shaken like "jelly in a jar".
Letting things go ...
Accepting that you can't control others' perceptions:
First I had to let go of the idea that I had any control over what other people think. Some people are understanding, some people have been through it themselves and can empathise... some people only see the visible, and since there is no outward scarring, they can't understand why it is taking so long to heal. But I can't control their perception of me. I have had to accept that.
Honestly, I think my faith has been instrumental to my acceptance of limitations. In quiet times with God, I could just be. I couldn't pray much though - because I kept forgetting what I was saying. My brain was like a distracted budgie, flitting here and there. But I kept quietly calling out to Him for help, for peace and for understanding of the "why". "Why did this happen? What am I supposed to learn?" At a woman's retreat, sitting on a bank with my eyes closed, I had a strong sense that it is okay. That I should just keep doing what I am doing (being a school librarian) and to go at my own pace. I had a sense that I have been through worse. Everything is fine. "Reframe the picture". That peace really stayed with me.
But accepting limitations is an ongoing struggle and something I need to continually work on. Previously, I loved outdoor activities with the family - now exercise finishes me off! I loved praise and worship at church, now I often have to put earplugs in because the drumming is too loud. I loved it when the library was a buzzing hive of activity at lunch times - now I have asked the children to bear with me as I slowly build up to doing more with them.
Whenever I am either flying on a high after receiving a positive review for "Trainsurfer", or feeling low because sales are slow, I am drawn into the roller-coaster that is attached to ego. Does anyone relate to this? Selfish ambition is a temptation for me. If I follow the pathway of ego driven ambition, I have come to realise that I am no more than "the sum of every high, or every low" (Lauren Daigle). I am a tail on a kite that is buffeted by the winds of public opinion. That is not a stable way to live.
There is a small, but persistent part of me that wants to write books that are acclaimed. I think all writers might feel this way. Some may say - that's great - it's your dream - chase it! But God shows me that pursuing Him, is more important, and needs to be central. He is critical for my well-being.
After the accident, I had to put my writing ambitions on hold. Holding together a job, a marriage and keeping a positive attitude were tough enough, without piling on the desire to be an author. "Saving Thandi" remains unpublished... (watch this space - I will publish when the time is right) and although I have started scribbling ideas for book three, I can only manage that during the school holidays. There will be books - dear reader - but now that you know my story, hopefully you don't mind waiting for them :)
I am happy because I value my school librarian job, and want to hang on to it. There was a time, when I was feeling the foggiest, that I was afraid I would have to give up my job.
Sometimes you have to almost lose something to realise how important it is to you.
I am happy because I love writing - when I can, and I am in a place where I want to write for the sake of telling a story. What happens to the books after that, is not something I have much mental energy for.
I am happy because eight months after the accident I am so much better.
I try to be grateful always - for Christ, for family, for my health, for what I can do, for my job, friends, community, church, Accident Compensation and all the health professionals who are helping me to recover, the sunshine, the beauty of New Zealand, my therapeutic pets and for hope.
When I feel well, I hope I will be able to live life more fully.
Sometimes I worry.
I tried to ween myself off Amitriptyline when I read it has links to dementia (eek), but the pain immediately came back, the restless legs have moved to my arms now, and my circadian rhythm woke me up at 4.30 am, as it was doing before the little blue pill. So for now, I accept I need to stay on medication.
Some days I worry that I may have developed M.E/C.F.S. I react badly to exercise (P.E.M) and fear that I may have inherited this from my dear Dad - who has suffered for most of his adult life.
But today, I felt well enough to write a blog post!
The sun is shining on my teacher friends (who are striking) - and I am WAY better than I was eight months ago. For that I am grateful.
I hope my story can help someone out there who needs to read it and realise that they are not alone.
Here is the link to the Post Concussion Syndrome support group.