Tim was driving his daughter to school when he suffered a series of epileptic seizures. It's not until a year later that he was diagnosed with a benign brain tumour that would go on to change his life.
A little bit about Tim
I was driving my daughter to school one day in 2005 when I suffered a series of epileptic seizures. It took the paramedics more than an hour and a half to bring me out of them. After being rushed to the hospital, four hours later I was discharged and told I had epilepsy, and that I’d eventually be sent for an appointment with a neurologist.
I struggled with memory and concentration. It didn’t take much for me to feel tired and run down. I was training to be a counsellor, but I had to drop out because of my ongoing struggles. At my first neurologist appointment, I discussed the issues I had been having, and was basically told that they would go away, without explanation. This went on for more than a year, by which point my wife and GP had lost faith with this consultant, and my GP referred me to another hospital and consultant. While I was waiting for that referral to come through, the original consultant rang my doctor and said they had found a benign brain tumour, but that it wouldn’t be causing the symptoms I said I was having.
This impacted my mental health so much that I hated the new me. I couldn’t see how anybody would like me.
I lost friends. Some family members have never understood the true impact of my brain injury. I guess this is the issue with it being a hidden disability. My wife and children have been my rock through all of this.
Finding the right support
My first appointment with the second consultant was a godsend. Even with him only having my old scans, he diagnosed me with a second brain tumour and what he thought was a hypoxic brain injury from the length of my original seizures. This diagnosis got me a referral to the community brain injury team, who ran lots of tests that led to me being diagnosed with:
- Cognitive issues
- Short-term and long-term memory issues
- Trouble with planning and organising
- Difficulty remembering the right words to use
- A constant headache that would turn into a migraine, resulting in the left side of my face drooping like a stroke
The team referred me to my local Headway (Headway East Northants, or HEN for short). I’m lucky this is literally a few minutes’ walk from my front door. I began attending for one morning a week. I’ve been there now for about 15 years. They have helped me to come to terms with the life-changing effects of my ABI, as well as helping my wife Michelle and my two children, Lindsey and Thomas, understand the impacts my brain injury has caused.
After about seven years, with the help of HEN and my church, I managed to get a counselling qualification. Wanting to give something back to HEN, I asked if I could volunteer, and they invited me to join the board of trustees, which I did. They asked me to help with a new peer support group they were setting up. I work with Wilson, a fellow volunteer, to run this group, and we both find it just as helpful as the clients do. It is a safe space to discuss any problems or issues they have had in the past week, whether brain-injury related or not. We try to help them through this and we always have positive feedback from the client and the family.
When COVID hit, the centre wasn’t allowed to open, so we were asked if we could do a peer group via Zoom, which was a totally new thing to learn. But we managed it, and we still hold this session even though the centre is now open again, along with the session in HEN. In 2022, I completed a peer support group leader’s qualification. This was only possible with the support from HEN and my wife. I also now run a monthly peer group for clients who aren’t able to attend the centre.
Moving forward after brain injury
In 2022, I was asked to be the opening speaker at the Acquired Brain Injury Forum Northamptonshire conference. Thanks to the help and support from my wife and the team at HEN, I managed to do this in front of about 200 people. After my teary speech about life with a brain injury, several professionals came up to me and said how much of an impact it had on them to hear how hard life can be. Since then, I was asked to speak at another conference, and this has given me the passion to speak up for all those who have suffered from a brain injury. I have tried to turn what has been a negative part of my life into a positive thing. I say it’s a type of grieving process, as you see what you used to be able to do, and it is easy to just see the negatives and not see any positive. I hope I can help my fellow ABI survivors in their journey forward. I also want to help the families who are going through what my wife and I went through. Having to transition from wife to carer in the matter of a morning requires adjustments. I feel they need the help and support as much as the survivors, as they have to live with the brain injury just as much as we do.
My recovery journey up until now
I still suffer from the effects of my brain injury, especially the fatigue and memory problems. I have had to learn to pace myself and listen to my body. If I need a rest day, I take it. This has taken me a long time to admit to myself, and this is one of the themes I cover in my peer groups, as it seems to be a common issue. There are still times where I feel frustrated about not living the life I had planned for myself. I feel lucky I managed to get my driving license back, as I have a classic car that I enjoy driving to shows with my wife.
My advice to other survivors
A fellow volunteer said that I was a great example of post-traumatic growth, which was hard for me to see. But after writing this piece and looking back at all that I have achieved since my brain injury, I can now see it. I highly recommend that if you think you are in the right place in your recovery, you should look at writing down your new life story. I have found it empowering, and I’m thankful for all that I have achieved, which is only possible with the right help and support from my family and everyone I have met via HEN. I also suggest not beating yourself up about what you can’t do since the brain injury, try and find the positives without dwelling on the negatives. I can’t say enough how important it is for the rehab to be offered as soon as possible, not only for our recovery but for our mental health as well.