Portrait: Emily

A little bit about Emily

I was diagnosed with epilepsy 17 years ago and the medical professionals concluded that it was a seizure that caused a fall. None of which I remember as I had lost my memory for over 1 week, apart from a few snippets. My husband told me I had fractured my skull and a couple of bleeds in the brain.

There were times whilst in hospital that I didn't know who my husband was. It was COVID times where there were no visitors allowed. Once he left after a visit I was clueless and the lady next to me told me to look at my hands and I noticed the rings. She assured me that the 'man in the red coat' was my husband. I realised that our wedding vows of ‘for better or worse’ came into play very quickly.

Symptoms experienced following the brain injury

The medical professionals said I had post-concussion syndrome. We were given 'timelines', that in 3 months the 'big and difficult symptoms' would go away. Some of those symptoms were severe headaches, severe earaches, sensory overload, speech difficulties and movement problems. Those 3 months came and little had changed. It was only in September that I was diagnosed with a TBI.

Specialists involved in my recovery 

My husband and I have had to fight for medical professionals to take me seriously. We’ve had to fight for appointments and have taken matters into our own hands. I have met amazing medical professionals who work in the healthcare system and medical professionals outside of the healthcare system that have kindly wanted to help me.

They have since diagnosed me with other medical conditions due to the TBI: hyperacusis, aphasia, losing smell and taste, ataxia, chronic fatigue and palinopsia. The specialist neuro ophthalmologist we met said he had never met someone who had this condition and he didn't know what to do. He has however gone above and beyond to help. 

I've also had to relearn skills, eg. read, write, climb the stairs, walk properly, learn how to speak again, etc.

When my memory came back, I was unable to speak to my husband as the words were at the tip of my tongue but nothing came, which is important as I am a public speaker for children and young people. All of these I am continuing to learn. I know that there will be other skills that will 'pop up' that I will need to relearn. There's a long road for me getting back on to my beloved bike, but I will get there.

The medical professionals said that there were online support groups that I should try and I did. I personally found them to be a bit negative, which had an impact on my mental health. We eventually decided to require the services of a counsellor but he had limited knowledge of TBIs so this approach didn’t work well either. As someone that really did struggle to speak and find the right words it made talk therapy less effective.

What is missing in terms of support  

I think the hardest thing about all of this has been that, like epilepsy, this is a medical condition that can't be seen. It's not like I've broken my arm and have got my arm in a sling so people can physically see something is wrong. I look 'fine' and 'normal' yet there's so much that's happening that people don't see. It's something that not a lot of people know about. There is a need for more awareness around brain injuries. 

I've tried to explain it to my family and close friends and they have really struggled to understand it.

What has been helpful during my recovery 

My faith has been really important in this journey of recovery, which I know will continue forever. As a Christian, I believe that God is a God of hope and this is what I’m constantly having to remind myself. Someone from my church that didn’t understand TBI’s but understood recovery through her battle with cancer said to me ‘Take one step at a time’. I hold on to that nugget of wisdom. I’m trusting the journey, I’m trusting the people that are helping me along the journey and am so thankful for them. With every little step I take, I have hope that it’s one small step moving forward in my journey of recovery.

Moving forward 

Some people compare where I am currently in my recovery with the ‘old Emily’. I do have new medical conditions that come with their own obstacles, but I don't see these as obstacles, I see these as challenges to overcome. I am still the SAME ME - I still have my faith, I still have the same values, I still have the same likes and dislikes, I can still be truthly blunt in love, I can still laugh at jokes, I love spending time with my husband and family, etc. 

People struggle to see this and I have lost friends because of this, which I have had to grieve.

In spite of all this, I have questioned whether I have changed. I have asked my husband and family whether this is the case but through talking to them, I am reassured that I am still EMILY.