Survivors' Stories

Joanne’s Brain Injury Survivor Story

Joanne had a seizure and was rushed to hospital where a large mass (grade 1 brain tumour) was found on her brain, a craniotomy was done to have it removed:

Hello my name is Joanne… Most people call me Jo. I am 45, married to Paul and mum to 2 girls. My job is a sign language interpreter for the deaf.

June 2016: I was in signing class for deaf children, I had a seizure resulting in a facial droop and temporarily lost my speech, my mobility was fine. Staff at the school panicked and thought I was having a stroke, they held me down. All felt calm until then, I could still sign but they held my hands down as I tried to explain there was something wrong “I can’t speak”. This upset me and I got very distressed. I was rushed to hospital, my speech came back but it was slurred, this was very frightened.

Scans later I was told a large mass was found on my brain. I was transferred to Salford Royal that day and had a craniotomy to remove a large grade 1 brain tumour. It’s all a bit of a whirlwind that I just went with, there’s no time to really think what you’re going through, the enormity of the impact on your life and the life & death situation you have gone through. You just do it.

I had been having periods of fuzziness, fog, migraines and blank moments before the big seizure. I had 4 trips to the doctors before because I knew something wasn’t right, however I was only given blood tests and antibiotics with no investigations.

My brain tumour is now a case study, it’s rare, possibly growing over 20 + years—no one really knows.

So now I am in recovery, gosh it’s slow and frustrating. The operation was a big deal, I hadn’t realised until the bandage came off and there was this massive snake scar and my head was shaved. They had cut a large part of my skull to remove the brain tumour, I have even seen photos from the surgery before and after… Not many people have actually seen their own brain!

So I’ve learned to speak again. I used sign language at first to help me ‘hook’ a word in my brain and put speech to it. It was laboured, slurred and mixed up, now 7 months later it’s fluid and has lots of vocabulary but is massively affected by fatigue. My anxiety is high, confidence has been at an all time low but is starting to re-build. Stamina is difficult, I swim and it’s getting easier but I’m so slow. My poorly brain can’t cope with lots of stimulation, noise, smells and busy places… They drain me.

My days are carefully planned so I succeed and don’t get stressed, otherwise I will have a set back. But I am alive and have learnt so much about what really matters: Work, friends and family have been very complicated in this illness, I have been let down but also so overwhelmed by kindness. It’s made me see what I value with those who built me up and support me. Also, what to leave and walk away from because it takes away my peace and gives me stress.

I am learning to look at life from a different perspective. It’s hard, emotional and exhausting living with a brain injury but I believe I will become a better person and will be able to help others in this experience.

I have lots of scans, hospital appointments and rehabilitation in lots of areas, yet I am glad of the help. Some days are really bad because of my fatigue, or when my brain doesn’t operate well processing information. That what used to be so easy can easily get you down. Then you have the good days when you discover and enjoy a task. Laughter which is not often can lift your spirit. It’s a new way of life for me now.

My neuro psychologist says I am now a tortoise—In the story of the race between the hare and the tortoise. Life is at a slower pace and plodding along but you will win the race in the end!

So to all you brain injury tortoises keep going, keep plodding along, you’ll get there in the end.

5 thoughts on “Joanne’s Brain Injury Survivor Story

  1. Thank you for sharing your story. It must have been scary. My brain damage from a concussion is minimal. But I,too, have a big problem with fatigue and getting overwhelmed easily. You are right about having to plan only one or two small “projects” a day. If I take on too much for me, I’m wiped out for two or three days and can accomplish almost nothing during that time.

    You are a brave lady and I wish you well.

  2. Thanks Linda, keep plodding along, you are learning to manage your fatigue well, keep to small tasks and rest. I found rest very difficult at first, when your used to living life full and fast it’s very difficult to get your head round fatigue. Rest means restore, the very thing that your poorly brain needs to mend itself. Keep going, it’s slow, but you win the race in the end. I wish you all the best. Jo

  3. Brilliant post Jo it helps us to understand what is happening. Keep going we are all praying for you and here if you need anything ( Don’t forget if you fancy a whizz round the park!)
    Pat X

  4. Jo you are a real inspiration, the purest of honesty fill me with the deepest of respect . What you have taught us all is perceptive, reality and the purpose perhaps of why we are all really here. ~ your loving cousin

    1. Hi Catherine, I have just seen your comment. It will be a year on the 11th June since the brain surgery, I can’t believe that I’ve been plodding along tortoise pace, for a year, yet it seems that it’s just happened.
      The more time has gone on, I have come to realise how massive this is. I try to remain positive and think this life changing event for me, can be an opportunity to live differently in a good way.
      Some days I am still consumed by fatigue and anxiety, other days I see a little of my old self and that makes me smile.
      We have a choice how we respond to what comes our way in life, I choose to get up and get on, and if I can’t then I will rest and try tomorrow. Thanks for your support x

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