As I am coming on in leaps and bounds, I can almost hardly recognise myself now… I am hoping through sharing all of this with you, I will be able to learn more not just for me but for others, as well as for my brain injury. See that’s a start as well, admitting that I have a brain injury is a big step. This is what it is all about…
Since accepting that I have a brain injury, that I can’t change, I have started to realise and understand that I can change myself around it, rather than try to be who I was, and it’s changed my life.
I am Liz and I have a brain injury. I am 52 and had a subarachnoid haemorrhage in 1993 for which I had surgery and have a clip. I was given a 50/50 chance of coming through the operation and was extremely lucky to have had no real physical effects. At the time my daughters were 9, 8 and 5. Although I looked the same, apart from a hole in my forehead and slight indent on my face, my personality changed. I feel it is important for people to understand how, although I may look the same, both myself and my family have been devastated by this and how we have silently adapted our lives around this.
As my personality changed, one of the worst things was that I could remember the person I was before and have strived to try and still be that person. Where I was out-going (though not the life and soul of the party), I suddenly became very nervous around people as I wasn’t able to talk in the same way.
I wasn’t able to remember words and found it extremely hard to think of the right things to say…
Although my understanding was still there, I wasn’t able to remember words and found it extremely hard to think of the right things to say. I found that this isolated me and the only way I could cope was to avoid situations like having more than 2 or 3 people around. The only time I was able to cope was when I was with someone I felt comfortable with or in a support group situation where everyone else had brain injuries and understood.
My downfall was that I covered depression and hardship by smiling, laughing and joking. People couldn’t understand that when I asked for help it was because I needed it so I didn’t get support that I needed. I allowed people to make all decisions for me as I found it hard to accept that I was finding it difficult.
I lost concentration very quickly, I got angry very quickly, became impatient but laughed it off. As a result of the operation I have been left with epilepsy that has been difficult to control as I suffer only occasional grand mal but have partial and absence etc., that have only just been eventually more effectively controlled so it is only occasional now.
After the injury I had slow memory until present day; today I still have sketchy memories.
Because of the fact that I was able to walk, talk and looked the same my husband couldn’t cope with the change in my personality. As a result of this, we got divorced but it was a very amicable divorce as it was no-ones fault, just circumstances. My children were with me but I found it hard to cope and eventually I let my eldest daughter go back to live with her dad.
My middle daughter had ADD that impacted on everyone’s life and I was unable to cope with her, so was her dad. It broke my heart but I had to put her into voluntary care. I had already been to social services for help with her but was refused it. My 5 year old daughter took charge.
I wasn’t safe cooking so my daughter learnt how to do it herself.
I had a problem not seeing when the house needed sorting out, she helped. For the next 5 years she took over. The one thing that I did do was, with the help from Headway, I got a part-time job working with donkeys at Alvechurch. It was great. I was only with 1 maybe 2 people occasionally and it was also teaching children with disabilities how to care for animals. At least I felt I was doing something…
Over time I found that fatigue was a real problem and reduced the amount of hours I worked until I wasn’t able to do any more. I volunteered at a local taxi firm for a few hours a week answering phones and radios. I was able to do this because I didn’t have direct contact with people, only over the phone and I do have a cheerful voice to be able to pass that off.
I re-married but struggled more as my husband liked for his family and neighbours to come in and out of the house and I couldn’t cope with it.
I found depression was hitting me hard but kept pulling myself through it whilst withdrawing from everyone.
Then 18 months ago we moved into secured sheltered housing. What a difference! It was for over 60’s when we arrived and, although my husband was over 60 I’m not, but through health conditions they allowed us to move in. We have an on-site 24 hour warden (support worker) who comes round every day, an emergency pull-cord in every room and it is so quiet (and to my liking!). I am now able to relax and think about what I do and at an average age of 75 nobody comes in and out.
I began seeing a Headway councillor at home last year and what a difference it has made. I had been diagnosed with COPD 2 years earlier and at the same time as seeing my councillor I started pulmonary rehab, from home as I was unable to attend the group because of the amount of people.
Through my councillor from Headway Worcestershire I began to have confidence in the fact that she also had a brain injury and was able to understand easier the problems I was experiencing. She was able to word questions in a way I found easy to understand and was comfortable about this. I could feel the inspiration coming through from her and the enthusiasm that she had for achievement. This gave me the push to understand and achieve what I am able to do today, which is my walking and craft. I have gone from strength since then. The good part is that it only took 18 months for me to get to know the “new me” and get better. The bad part is that it happened after suffering for 20 years…
Thank you for reading this far. Make sure you come back to read the second part of this series: “My delayed recovery”. “ If just one person is helped by this, knowing they are not alone, then it will be worth it.
About the Author
“Hi. I am Liz and have struggled with acceptance of my brain injury for over 20 years. I’m wishing to share my story as I am sure many people also go through similar problems. I am going to do this in a series of posts; it is the hardest, yet most important thing that I have ever done.”