Amy

Age at interview: 59

Brief Outline: Amy and her husband were involved in a car crash in 2003. She sustained a traumatic brain injury and broke her back, neck and sternum. He sustained some physical injuries too.

Background: Amy is married to DJ (Interview 40). They have two grown up children, aged 35 and 40. She is a researcher, conducts brain rehabilitation and is a Christian missionary. Ethnic background' White American.

More about me...

Nine years before they took part in this research, Amy and her husband DJ (Interview 40) were involved in a car crash. They were at a stop sign when someone hit their car from behind. Amy sustained neck, spine injuries and brain injuries. She doesn’t remember what happened next, including the hospital where she had neck and spine operations. 

 

Amy had extensive rehabilitation, including occupational therapy, physical therapy, surgeries, neurology, acupuncture, massage, laser and medication. She found alternative therapies like electronic acupuncture helped her ongoing physical pain. One of the best forms of rehabilitation she did was aided by her five-year old granddaughter. Amy said she felt ashamed that she had difficulty with counting, reading and spelling after her injury. Her granddaughter taught her how to use her ‘Read a Rabbit’ programme, which is designed to educate children. This showed Amy how much more work she needed to do. 

 

After a brain injury Amy found there were several things she had to relearn. She explained that she didn’t “have the same degree of social grace or discussion”, so she said everything that came into her mind. She also said it takes longer to think, so there can be misunderstandings in conversations with other people. Amy said that after brain injury, people can look perfectly normal, but other people don’t feel comfortable around them because they’re “not working within the social norms that everyone’s comfortable with”. 

 

In addition to striving to get her life back on track, Amy also helps rehabilitate other survivors of brain injury using a computerised cognitive rehabilitation programme. She finds this work exciting and the first thing she does is to “build back hope and get them to a place where they can improve even a little bit”. 

 

Amy described her husband as her best friend and supporter. They were well supported by their two children after injury because, as they were both injured, they couldn’t really be there for each other. 

 

Amy said that after a life-changing injury, “the most important thing is not whether you fall, but whether you get up again”. She is currently studying at a prestigious university in the UK and wants to do a PhD. 

 

Since her injury, Amy has had opportunities to do things she wouldn’t have done before. She is...

So I also work with doctors and students in developing nations where I act kind of as a mental health consultant and I also help them prep their papers for journals because their papers are really good but they're some other kind of country English so when they send them to an English journal or British journal then they're not accepted because they're not in quite the right format. So we fix some of that up and we edit and we put them together and it's; just has been the experience of a life time, all the wonderful things that I've been able to do that I would; if I hadn't had the brain injury I would never have had a chance to. So although I'm not grateful for the brain injury and I wouldn't wish it on anyone. Any kind of injury that you have it's not, it's not the end of the world and…

 

People say did it make you more compassionate and I would have to say no. I was compassionate before as much as I could be. I might be a little bit more aware but mainly it's just opened up other unexpected and amazing doors and I just would like to encourage anyone to not think of yourself as always in recovery or as a brain injury survivor or a spinal injury survivor. You're more than a survivor, you're a person and you're a person for us before you're a survivor and it's so critical to know that, just to see yourself instead of a victim. See yourself as victorious as doing something in life and not to look at what you can't do but look at what you can do and go forward and give it a hundred percent. If people disrespect that that says more about them than it does about you and people are encouraged now sometimes they meet me and they hear my story or different parts of my story and they feel more comfortable with me now than they did before I had a brain injury because before I had the brain injury they didn't feel that I was approachable or that I made mistakes which of course I did just like anyone else but after the brain injury they were so obvious there was no hiding them. That, but in a way it made people more comfortable so do remember in life you know it's , it's, we're all in this together. We have a limited time and so let's each one of us make the best of it.

 

Amy’s siblings didn’t really understand her brain injury. She said they “acted out” to try and...

Now let me see with my family – the more distant family like brothers and sisters that had moved away, that was more difficult because they didn't really understand, they didn't understand what had gone on. They understood that there was a change in the person that they knew and I think that everyone in a family close to people or far away from them, they mourn the person that was there and they want that person back and a lot of times people act out to try to get that person back. So they'll do things to get attention or to provoke or they'll get angry because of their own grief and so it's important to realise that that is the part of the process and not to take that personally, just to realise that they need time to realise that things have changed and there's no going back really. So that's about, that's about it with my family I guess yeah. 

After her brain injury, Amy contacted brain injury experts and for advice. She tailored her rehab...

I emailed people because they told me that there was nothing that could be done. So I actually started emailing neuro-scientists, anyone that had something where it; it seemed they actually knew what they were doing and I found out what they were saying that worked and then what I did was I found programmes that seemed to be able to carry some of that out and I matched them to the areas of my brain that were injured because I figured that it would; it's almost like going to a gym in that if you've injured a shoulder then you might not necessarily be able to directly exercise that shoulder but you can exercise all the muscles and the ligaments and everything around that shoulder and strengthen it and protect it and then eventually get to the shoulder and make the difference. So I took all the areas like attention, processing speed, memory, executive function and I found out where I could work and kind of tailor made a plan for me and I do that a lot for people now. I do a lot of consulting in that field. And what people don't realise many times is they think that they can buy a computer programme off the shelf and if they're doing crossword puzzles or if they're doing something that says its brain training that it's going to make a difference and many times it's not. It really needs to be targeted to that person's specific deficits and those deficits need to be built for it to make like a long lasting difference because otherwise what we find is people get good at the games but they don't get any better at life which, you know isn't so helpful. Maybe they get a little bit of self-esteem but if, if those strategies are used correctly they can make, they can make massive gains. 

As part of accepting her brain injury, Amy held a funeral for her old self because she wanted to...

And to persevere – I think when people have been severely injured whether it's you know neck, brain, spine, hips whatever you can get an idealised picture of what you think you were and that old person becomes a big hero and the new person becomes like, why am I even here on this earth and I advise people to do what I did, is I had a funeral for my old self on the inside and I said goodbye she's never coming back, just said goodbye and I'll build again. Because life is not necessarily what you expect, it's not what you planned but life is what you make it, you know you can produce your own show as a you go along and unexpected things happen and it's not so much what happens to you but it's how you're able to respond to the things that happen to you that will make the difference in how your life turns out. For instance, the things that happened to me I wouldn't have wished them on anyone but in the end I met absolutely phenomenal people. I ended up doing things I never thought I would be doing. 

Since her brain injury, Amy feels she doesn’t have the same level of “social grace”. She often...

What were the sort of problems that you had that were associated with your brain injury?

 

You don't have the same degree of social grace or discussion. So if something came into my mind I would just say it, whereas normally a lot of things came into my mind and do today and I don't necessarily say them and there's a reason that you don't necessarily say them. Also it takes longer to think, so many times when you're listening you don't hear the whole conversation so what you're responding to is only a part of what people said and misunderstandings can come from that, and I think that in many cases in the areas of face recognition and in the areas of expression, all of those things, once someone's been injured they have to be re-learnt and they can be re-learnt in many cases. But if they're not then a person can look perfectly normal on the outside but the person that's dealing with it feels that, 'Oh like this person's a little off,' or, 'this person doesn't like me,' or, 'why did she say that to me?' They don't feel, they don't feel comfortable because you're, you're not working within the social norms that everyone's comfortable with.

 

Amy is working on a project called ‘Think Well’ which involves helping patients become informed...

And another thing is people read a lot and watch on telly or their friends tell them of all these research miracles that are out there you know and you see them on the paper – Alzheimer's cure, brain injury people, paralysed man walks – and people don’t know enough about research and they can it's not that hard. And so one of my projects right now with , with Dr [name], is to, we're working on a project that we call 'Think Well,' so we're putting in the public at the heart of research so we can share with them, without math but with principles and with teaching tools, how to take apart research for themselves and so that they can become informed health consumers because I think that anyone with an injury or with a neurodegenerative disease that a huge part of recovery is becoming an advocate for your own care and also it helps if a person is unable to be their advocate. Another important thing is to have family members or friends that can advocate for you. So we're putting that information out there and hoping to make a difference and you know that's something, I hadn't expected to go in that direction. 

As part of accepting her brain injury, Amy held a funeral for her old self because she wanted to...

And to persevere – I think when people have been severely injured whether it's you know neck, brain, spine, hips whatever you can get an idealised picture of what you think you were and that old person becomes a big hero and the new person becomes like, why am I even here on this earth and I advise people to do what I did, is I had a funeral for my old self on the inside and I said goodbye she's never coming back, just said goodbye and I'll build again. Because life is not necessarily what you expect, it's not what you planned but life is what you make it, you know you can produce your own show as a you go along and unexpected things happen and it's not so much what happens to you but it's how you, how you're able to respond to the things that happen to you that will make the difference in how your life turns out. For instance, the things that happened to me I wouldn't have wished them on anyone but in the end I met absolutely phenomenal people. I ended up doing things I never thought I would be doing. 

Amy used software to convert written information into audio format. She felt that walking around...

For reading the disability assessor had me work with a programme and my reading was very, very slow in the beginning and now it's very fast. But the difference that was they had me work with a coloured overlays and now I colour the screen on my computer and it made a huge difference because it retrained my visual processing and so if I read with the colour the comprehension was better, the understanding was better. There's not a lot of good research on it but it made a huge difference for me and I'm sold for compensation. I can read more quickly. What I did a lot in the beginning is I not only read, it's important to use all your senses because each of, each of your sensory aspects has its own memory so if you can engage a certain smell with what you're doing. If you can hear it so I would put my papers and my text books on pdf, then I would send them over to an internet programme called Spoken Word and then a mechanical e-person reads your texts back to you and I would play that while I was walking because also when you're walking and engaging your motor cortex there's also links to areas of reading. So I would walk and I would listen and then I would read again and that would make the material more deeply processed and ingrained in my memory cells. That was one way of, a couple of ways I guess of compensating.  

For Amy, the only way to happiness is to focus on what she can do and embrace life.

A lot of time we want to focus on the things that we're not going to be able to fix and sometimes people pin their happiness – if only I had, if only I could. But the thing is that the way to happiness is not grabbing what is not there. The way to happiness is taking in both hands and embracing life that is there and that's one of the things that I've learnt to do. So it's a combination of strategy and it's a combination of rehabilitation and hard work and acceptance. So accepting the limitations is not giving up, accepting limitations is taking a realistic look at what's there; but doing everything you can to work around it first and then if it can't be done then you will learn.