Great Expectations

by Jan 8, 2020Recovery2 comments

Hi!

I’m Sarah

I’m recovering from a brain injury. But there’s more to me than that.

The cool weather continues, typical of Sydney summers, a pattern of several stifling days in the 30’s followed a few in the 20’s. The sudden drop in temperature is a relief, I dig around for my winter track pants, it’s not that cold, I feel cold comparison.  

 

I am resting today, and like my change in wardrobe, I feel very ill. The last three Sundays, I’ve been to the 9:00am gentle yoga class then wandered home through the local shops, and sunk into the comfort of bed. When my injury forces me to stop and rest, I’m glad for the cooler temp.

 

The sudden change in weather, the drastic shifts, the seesaw of hot, cold, reminds me of living with chronic illness. One day I’m up; out and about, brain functioning, energy to participate in conversation, write a blog post, prepare dinner, the next I’m down; barely able to remember what day it is, fuzzy, foggy feeling in the brain, no writing, laptop remains shut, rummaging through the freezer for a meal I pre-cooked on a better day. 

 

I am tormented. The voice tells me, you are in bed, you are not getting better, you are going backwards. It constantly compares my progress to yesterday, the unforgiving taskmaster with high, false expectations; healing is a linear line up, up, always upwards. For the voice, lying for that long, in one spot, signified complete defeat. It will never let me forget. 

 

I am aware of these mind games. I usually catch them in time. I counter it with a blast of meditation, an audiobook or whipping out my gratitude journal. The best technique I found is a huge calendar poster, each day I’ve filled in with the progress I’ve made. The poster sits opposite my bed, in my face, so I can never forget how far I’ve come: 365 reminders of the tiny steps forward towards wellbeing. Shut up negative voice. I say to myself. This – my progress – is what I’m focusing on. You have no place here. These acts of defiance quiet the voice for a time, granting me some precious peace I continue essential bedrest. 

 

What I’ve learnt (and relearnt time and time again) healing happens in stages, often no set pattern or known path. I know these bed days are important; there are periods of stepping back, catching one’s breath, gathering the mental and physical strength to face another day. 

 

This week, I listened to “How to Be Sick” by Toni Bernhard, an audiobook, my eyes too tired to read. At first glance, the title seem defeatist, counter productive, who would want to learn how to be sick? Toni is a retired law professor and a long time practising buddist writes how she’s endured nearly two decades, mostly bedridden with a chronic illness. She’s learnt over the years to be a better patient, and a better person through her experience. I’m comforted and challenged at the same time by her approach to ill health. How could I find more peace in my own situation and shut that voice up, once and for all? 

 

As I lay listening to sage-old wisdom, a particular word keeps popping up for me: self-compassion. The act of extending kindness and comfort to one’s self, like how you would behave towards a friend. I find this easier said than done. Logically, it makes perfect sense. I deserve compassion, my body and brain have been to hell and back and I need time to heal. Despite this harsh fact, the inner voice has a different agenda.  

 

The voice has expectations. I am 32, and it tells me: I should be up and about. I should be working. I should be driving. I should be doing stuff. I should, I should, I should… it goes on… forever, it never stops. 

 

The cruelty of the voice is intertwined with grief for the loss of what I expected to be doing during my 30’s. I grieve for the life I’m not living. For the people I would like to meet, the places I’d like to go and the fun things I’d like to be doing. 

 

For now, I stay in bed, cocooned in blankets like a caterpillar waiting to become a butterfly. As the audiobook speaks words of sage old wisdom to me, I hope some rubs off onto me. My mind wanders to the future. One day, on that magical day, when I am well, I hope I can enjoy the days I’ve been given and forget the pain of these years. I hope I can leave behind any bitterness for these days, weeks, months lost in bed. On that day, when I am well, I hope I can enjoy the life I have left to live.

 

2 Comments

  1. Avatar

    Hiya. I walked into the new Bunnings Nowra today and totally overwhelmed and brain fogged up as my damaged brain filters found it hard to filter out all the colours, goods and visual information overload. I walked out of Bunnings with my Tarp and was dazed.

    Reply
    • Sarah

      I hear ya.

      Kindness is essential.

      Reply

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