Under A Cloud of Uncertainty

by Aug 18, 2020Recovery5 comments

Hi!

I’m Sarah

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

I am hunched over when I sleep, at yoga and at the dinner table. Pain is lonely. It is the thief that robs my joy and spontaneity. It takes my freedom. I’d like to make jokes again. Laugh more. Frown less. 

 

At yoga, I use a chair. I can not put my head below my heart. All my blood rushes to my brain. I get an instant pressure headache and dizziness. I complete the class seated. My friends say to me, “You are strong. You are dealing with so much in a positive way.” I smile and thank them. I don’t feel strong. I don’t feel positive. I want to scream: “can’t you see I’m falling apart. I need help.”

 

I imagine myself as a dung beetle rolling a giant ball of shit up a hill. In this case, the ball is too big for the beetle. It crashes into the beetle’s face. That’s how I feel: a tiny insect covered in shit. 

 

The burden I carry is my unknown future. I am unable to make plans. I don’t know what’s wrong. I am forced to live day to day. My parents want to retire. They are uncertain if they can. I consider applying for the disability pension. I didn’t think it would come to this. My family doctor and occupational therapist agree I should apply. 

 

I am undecided on which way is forward. Should I do what the medical professionals say: accept my situation and stop looking for answers? A part of me thinks this may be my fate. I am unsure about who to believe and trust.

 

Life is a mystery. All we know is the ending. We die. But what happens in the in-between? Nobody knows. We are all in the same boat. Though into the mix my mysterious illness and this fact of life, the uncertainty is too much to bear. I want to know will I be like this for the rest of my life? 

 

Laney is a friend in my swim group. Her nickname is Sunny. You can guess why. Laney was diagnosed with breast cancer during the time I became ill. Both too sick to swim, we join our friends on the shoreline as they cast off. 

 

Our friends splash us. Their cries interrupt the early morning stillness. “Laney! Sarah! You’ll both be back here before you know it.” They dive in like a pod of dolphins. The beach is quiet. Laney takes a photo. I make a mental note for my blog. Do I know that though? Will I be back? 

 

Laney wears two beanies. She told me its cold without her hair. She turns to me and asks, “How are you feeling Sarah?” 

“I’m unsure of my future. There’s so much unknown”. I reply. 

“It must be hard – not knowing. I’d rather have cancer than an unknown illness like you.” 

I look at her in disbelief. Laney’s been through surgery, radiation and chemotherapy. I can’t imagine what that was like. 

“In a way, yes, because I have eighteen months of treatment set out for me. Now I’m going through the motions.” She smiles. Her positive outlook amazes me. I am slightly jealous of her situation. 

“You, well, you have no plan.” 

 

Before my injury, I swam everyday. My favourite aspect of the ocean was its unpredictability. I reveled in it. The conditions are wildly different from each day to the next. Calm and flat days were followed by rough and choppy waves. The swell lifted, pushed and rolled me around. I won’t go far if I fight the currents. Daily swimming helped me handle life’s randomness. A reminder to go with the flow. It grounded me. I needed it. I need it still. 

 

Now my life is over-structured. I use lists. The day begins with breakfast, a shower and getting dressed. Tick, tick, tick. The basics. Next is rehab, doctors appointments and rest. Tick. The lists aid me when my memory and concentration falters. Lists are my lifesavers and my jailer. They take away my ability to be spontaneous. I need to both plan and be flexible. It is necessary. It takes away the flow. It does my head in. 

 

Number one on my list: find the reason for my illness. This item has been my list since January 14, 2018. I channel all my energy into this task. I obsess over it. I spend hours on Dr Google. I join online forums and dig for clues. 

 

I am obsessed. I know it. I also know the squeaky wheel gets the grease. I keep the ball rolling forward. Forward to where? I email my integrative doctor, “Is there anything else I can do? I feel awful.” He replies quickly. “You are doing well Sarah. You are slowly healing. We need to take our time. You have been very ill. Yes, there is more I can do for you.”  

 

The only certainty is this: if I stop pushing that ball – it will surely smash into my face. I keep a shoulder to it. I don’t know what my next steps entail. I wait by my laptop for the next email from my doctor. I hope to find a way to stay strong through it all. Stop it from smashing into my face.

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Sarah Rasborsek

Sarah Rasborsek

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Sarah is author of Healing My Brain, My Way. She writes for people who are ready to live a deeper, richer life. She posts everyday here: instagram.com/sarahrasborsekRead her latest book here

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5 Comments

  1. Avatar

    Hi, Thank you for another interesting post. My son had an attack of viral encephalitis over 12 yrs ago, the medics could not tell him why – what caused the infection. This has left him very afraid of any and all sources so he cannot use public transport and cannot drive because of severe fatigue.

    This has left him worrying about his future, it is the uncertainty which also causes many anxieties. Although he has a very supportive partner, it also worries my wife and I who consider ourselves responsible.

    I too have worked well past my retirement age and we worry about what may become of him when we are gone. I fought with our government work and pensions department to get him benefits as he couldn’t work, but he would not have been able to put up with the hassle and frustrations.

    It is the uncertainty which causes so much anguish and pain.

    Reply
    • Sarah

      I hear you. <3

      Reply
  2. Avatar

    Sarah, my daughter who has been unable to work for past 8 years because of ME/CFS and concurrent PTSD managed to get a Disability pension after several years. It was stressful for and I helping her do the paperwork and going for the interviews but honestly, you are entitled to it. It just takes some of the pressure off financially re alternative appointments, treatments, etc. It does not mean she will stay on it forever, but it is very helpful right now.

    Reply
    • Avatar

      I spent almost four years looking for my answer. I nearly drove myself crazy trying to figure it out. The answer finally came in October 2018 after a spinal tap revealed I’d had West Nile encephalitis. An arbovirus panel and a good neurologist gave me hope that I can live again. Yesterday I did a 3.2 mile hike. I thought I’d never make it back to the top of the mountain, but I did. Keep fighting for your answer.

      Reply
      • Sarah

        Thanks Leslie. I’m still searching for my answer! I won’t give up! Well done on the progress you have made. Enjoy life

        Reply

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