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Sarah 2.0: Recovering from Traumatic Brain Inflammation

Posted by Peter Barnes on February 5, 2020 at 3:19 PM

Close up picture of pink sole from running shoe in a park on a sunny day-1What happens if you suffer chronic brain inflammation?  How does it affect you, physically, emotionally and cognitively?

And what can you do to help you recover?

Sarah Rasborsek, a young, healthy, successful woman enjoying her life, was stricken by brain inflammation.  Her world was turned upside down. I met her via a Learning Success Podcast interview in February 2019, where she explained what had happened and how difficult her life had become.

Now  a little over a year later, Sarah spoke to me again on another episode of the Podcast. She has made significant progress in her rehabilitation. But she explains she will be unlikely to return to how she was before the inflammation. She describes herself as a new Sarah - Sarah 2.0.

Listen to the interview 

Topics covered

  1. Progress on rehabilitation after brain inflammation
  2. Effects of brain inflammation including:
    • Auditory processing difficulties
    • Chronic pain
    • Paralysis
    • Fatigue
    • Mental & Physical weakness
    • Vertigo
    • Memory loss
    • Postural orthostatic tachycardia syndrome

People & organisations mentioned

  1. Dr Norman Doidge
  2. World Age Group Triathlon Championships,

Resources/books/articles/places mentioned

  1. The Brain That Changes Itself by Dr Norman Doidge
  2. Fast ForWord – cognitive and language training program
  3. Yoga
  4. Reading Assistant – online reading aloud practice & coaching

If you would like to read the complete podcast transcript, here it is:

Episode 109 of The Learning Capacity Podcast

Sarah 2.0: Recovering from Traumatic Brain Inflammation - a 12 Month Update

Peter Barnes:                Today we catch up with a remarkable young woman who first appeared on the podcast a year ago. Her name is Sarah Rasborsek and she told us, 12 months ago, how she was rebuilding her brain after she suffered a chronic brain inflammation.

Now 12 months later Sarah has come back to give us an update on the progress she’s made in recovering her life. She actually hasn’t succeeded in returning to how she was prior to the brain inflammation. She describes herself as Sarah 2.0, a new version of herself.

For those of our listeners who didn't hear our first conversation, Sarah, would you mind just giving us a bit of a summary of what happened?

Sarah RasborsekSarah Rasborsek :          Thank you, Peter, for having me on the podcast. It's great to be back. My last podcast, we spoke about how I'd represented Australia at the World Age Group Triathlon Championships, which is like a Masters type event, in Amsterdam. That was for my 30th birthday. And then, I'd just completed my first ocean marathon, which is a 10k swim. So, I was not professional but I was definitely fit and loving life and running around and being very busy.

Then I had one more race, a triathlon, up on the Gold Coast. Basically, after that race, which I finished in normal time, a normal race, after that, I had a headache and the headache never went away. I never really got out of bed after that.

Peter:                           And that was for almost a year and a half. Is that what ended up happening?

Sarah:                           Unbelievably, but yes.

Peter:                           Oh, terrible. And you had difficulty getting a diagnosis, I believe? But eventually you did and you've given me a list of things that were diagnosed about your condition. Which, the main one was brain inflammation, correct?

Sarah:                           Yes, that's right.

Peter:                           I've got a list here. I'm going to just read a few of them and then perhaps you can fill in the rest. Things like chronic inflammation, postural orthostatic tachycardia syndrome, which I don't know what that is. Maybe you can tell us about that.

You had vertigo. You had constant headaches. Chronic pain, fatigue, mental and physical weakness, muscle weakness. You were paralysed down the left side of your face. Your hands were paralysed. You had tremors. You had complete memory loss. It's just a litany of horrible things. Tell us about it.

Sarah:                           It is a nightmare to read or remind me, but yes. All those things happened quite fast after that race and then they got worse as the 18 months went on. The postural orthostatic tachycardia syndrome, that you mentioned, that means when I stood up my blood pressure dropped really low. That's why I was stuck in bed for 18 months.

The part of my brain that regulated my blood pressure was injured, so I couldn't get out of bed. I couldn't get off a chair. And combined with all the other things you mentioned, vertigo, chronic pain, headaches, all those things. But putting them altogether, it was just devastating.

Peter:                           So, you were totally wiped out. From your previous life where you're a highly motivated, successful athlete/businessperson, you went into complete collapse.

Sarah:                           Yes. The brain controls everything, so when the brain is injured or inflamed, it can't put the signals out to regulate your heart rate or regulate your breathing. So, all these things became non-automatic for me. The control system couldn't regulate everything about my body, which...

Peter:                           And this all got triggered about two years ago. Now almost two years later, you're here sitting in front of me. We're having a chat. You've travelled an hour and a half to get here.

Sarah:                           Yes.

Peter:                           And you describe yourself now as Sarah 2.0, yes?

Sarah:                           With much affection, yes.

Peter:                           Well, that's very nice. Well, let's hear about Sarah 2.0 in a bit. In the meantime, let's talk a little bit more about what this chronic inflammation of the brain caused in you. It's not just those diagnoses we've talked about. There were functional things. You were unable to drive, all sorts of things. Tell us a bit more about that. And you had auditory processing difficulties.

Sarah:                           Yes.

Peter:                           Can you talk to us about those things?

Sarah:                           Sure. Like you mentioned, I couldn't drive. Well, I couldn't get even out of bed, but that's a good example to give you an idea. My family tell me I looked like an Alzheimer's patient. So, I'd putter around the house. I would not remember where I had come from or which room I had just been in. I moved back in with my parents, so I was staying in the room that I grew up in for 30 years. So-

Peter:                           And did you remember that room from-

Sarah:                           No, I did not. I knew that it was my room but I had no memories. I knew my parents were my parents but I didn't have any memories about them or my sister or my brother. So, to give you an idea, that's how bad it was.

Peter:                           Wow. So, you were sort of untethered from your past. You had no idea. Did you know you were Sarah? Did you know that?

Sarah:                           Not really, no. I didn't know my middle name or my last name. People kept calling me Sarah, so I was like, "Okay, I must be Sarah." That's when I thought of the name 2.0. "I guess I'll have to work towards that."

But honestly, just those simple things I couldn't do. I remember one day trying to sort the cutlery into the cutlery drawer and I couldn't figure out which was a fork and the knives. It was just too hard for my brain to process that sort of information.

Peter:                           Wow.

Sarah:                           That's a very simple task.

 Another part of my brain that was really affected was the language center. The inflammation was mainly on the left side and that's where all your auditory processing is, the speaking skills, your reading skills.

Actually, there was a time, for months, I couldn't speak properly. I was communicating through text messages or writing notes. But then my handwriting, I didn't know how to write the alphabet so I just had to do my texting. And being unable to communicate locked me into this dark hole. Okay.

Peter:                           That sounds just absolutely awful and terrifying. Emotionally, you must have been in a bad way.

Sarah:                           It's weird. I was but I wasn't. I actually became very apathetic. Because of the inflammation, I had no access to my emotions. So, it's almost like they've been put on hold until now. I am a bit better and I can start to process what I went through and now I'm starting to feel really scared, what I went through.

And I'm really sad and grieving. That's the process I'm going through now. It was terrifying. Absolutely.

I remember a girlfriend ringing me during that time and she said, "How do you feel? Are you depressed? Are you sad? Anxious?" And I said, "I actually feel nothing because there's nothing there. My brain is inflamed. It's not working."

Peter:                      Wow. But now it's working and you've got those emotions back and they're coming back strongly, yes?

Sarah:                           I would say yes, I am catching up.

Peter:                           You're catching up.

Sarah:                           Yes. It's like I have a backlog of emotions to process. Really, two years have been kind of out of my life and I've been put into this weird space and now I'm getting my head around what I've been through.

Peter:                           Did you have people to help you process this? I mean, you undertook a lot of therapies. We'll talk about that in a moment. But throughout all this, did you have a someone, a family member, a friend, a professional, to help you handle what was happening to you?

Sarah:                           I have my beautiful sister who is sitting here in the room with me, Nicole, who gave me a lot of emotional support. And my parents. I said I moved back in with them.

Peter:                                You've told us about how this happened, where it happened, how it's affected you. You couldn't sort cutlery. We got to the point where, in a time sequence, about a year after this happened to you, you and I had a chat on the podcast. At that time, you seemed to be getting better but then you relapsed you've told us, yes?

Sarah:                           Yes.

Peter:                           But you're out of that period and coming good and you're heading for Sarah 2.0, yes?

Sarah:                           That's the goal.

Peter:                           Okay. So, what can you do now that you couldn't do six months ago?

Sarah:                           Now, life's looking a lot different and a lot more fun. I did have a little, I guess, relapse. The body was still dealing with a lot of chronic inflammation and that made some things worse, even though when we spoke last I had made a lot of gains, especially I was able to learn to speak again. That was a big gain.

But then other things went downhill like thyroid and hormones and all these other things.

But up until now, I've had a good six, eight weeks. I can swim. I've just jumped back in the pool. It's a joy for me because that's my favourite sport. So, I've been swimming a couple of times a week, just like 20 minutes. It's just lovely.

I have driven around the block a couple of times but it's quite full-on. There's a lot going on. I think I had to check my speed. The other day I think my sister and I were driving and I ran into the gutter.

Peter:                           There's a lot-

Sarah:                           She was very patient with me.

Peter:                           There's a lot to process when you're driving, isn't it? There's stuff happening everywhere. You've got to do stuff with your feet. You've got to look. You've got to listen. Is that sort of you don't notice all those things or they just overwhelms you and you have to kind of focus in. How does that work?

Sarah:                           I don't remember to check speeds or look certain ways. It's just too much information. I've done a few test runs but I'm going to keep myself off the road for a little bit longer, I believe.

I've been able to walk my dog now every day, which is beautiful because I had vertigo for nearly two years and that low blood pressure. So, to be able to walk again makes me feel less disabled and more independent. I can walk to the shops now or walk to the train and I can be an adult again instead of feeling like an Alzheimer's patient.

I've even managed Westfield for an hour or two, which I've been told by my able-bodied friends that's quite-

Peter:                           That's a big experience.

Sarah:                           ... for even a healthy person-

Peter:                           An hour at Westfield Shopping Centre at Christmas time is hard work.

Sarah:                           Yeah. Memories returning have been amazing because as you know, memories are recreated every day as we remember things. So, the things that we remember about our lives and the things we choose to remember about us. So, for me to remember where I went to school and things like that has helped me remember who I am on a really deep level. And to lose that and not to remember who I am for 18 months, two years, was...

Peter:                           So, you lost 18 months to two years and some of it you got back but you're getting memories back from prior to that? Do you remember all of what happened to you during that 18 months to two years?

Sarah:                           Not really. It's quite hazy.

Peter:                           Which is probably not a bad thing, really, because it was pretty horrible.

Sarah:                           I'm glad not to. I have kept a lot of diaries during that time and when I read back what I went through, it's just harrowing. It's like day in, day out, I'm waking up in bed and I'm like, "Where am I? What room am I in? What house am I living in? What suburb? What country is this?"

Peter:                           Wow.

Sarah:                           It's really scary.

And then, I used to write up, it's like prompt cards. So, I'd keep them next to my bedside table. I'd wake up in the morning, have a panic, "I don't know where I am," so I'd pick up these pieces of paper. It's like, "Okay. I'm Sarah. I'm living at home. This is the suburb I live in with my family. You've had a brain injury, but you're recovering. That's a positive thing, isn't it?" to remind me. Just little strategies like that to get me through the day.

Peter:                           Wow.

Sarah:                           One beautiful thing that's happened in the last couple of weeks is... You mentioned my left side of my face was paralyzed, which often happens when someone has a virus. It causes brain inflammation, which is where my doctor is thinking this has originated from. So, the left side of my face is numb and you can't see this on the podcast, but my smile was lopsided. I had trouble chewing on that side. And just a couple of weeks ago I noticed my cheek was waking up and I was able to...

Peter:                           Oh, right. Okay.

Sarah:                           Yeah. But for me, that plus the memories makes me feel like Sarah again because a smile is such an important part of who you are. Like, someone sees you and you just smile. I didn't recognize myself in the mirror without my proper smile. That gave me a lot of hope.

Peter:                           Great. Sounds like you had a lot of hope throughout this thing. One of the things that strikes me about your story, and I reflect on our earlier conversation, how if you weren't you, you could still be back in that bed not knowing who the hell you were or where you were.

And it must be related to your sporting focus, the ability to focus on the future, to set goals, to be positive. I'm not a medical person or anything or a psychologist, but that seems to me to be an important piece in how you've managed to come from where you were.

Sarah:                           Absolutely.

Peter:                           What do you think of that? Is that-

Sarah:                           Yeah, I agree. Those habits, those neural pathways that I had developed to get to the World Championships probably has saved my life in this circumstance or prepared me to get through this situation so that... Where I'm lucky also, that they were there, but that they weren't damaged so much by the brain inflammation. It hadn't affected all of my brain.

Having those habits there and that habitual positive thinking and I've got a goal chart up on the wall and every day I knock off what rehab I've done and what progress I've made. Those habits are already there from the athletic side of things.

Peter:                           And the other thing I think I had noticed in your notes that you also do is you just mentioned then you reward yourself when you have a success.

Sarah:                           Mm-hmm (affirmative).

Peter:                           So, you're continually reinforcing the positive gains and the effort.

Now Sarah 2.0...never going back to Sarah 1.0

Sarah:                           That's been very important. I mean, that's for anybody trying to learn something new, to celebrate the small wins and the gains. You see that sense of movement forward and improvement. I have met a friend who had a similar injury to me and he said to me, "I won't be happy until I'm 100% back to where I was in my life."

So, he's desperately unhappy because he's not well. In reality, I'm never going to get back to where I was because this has changed me. So, I need to celebrate the little steps forward. I'm never going to be that Sarah 1.0. I've got to be Sarah 2.0.

Peter:                           You've recalibrated your expectations of yourself.

Sarah:                           Yes. Absolutely. Every experience we have changes who we are. I can't change this. 

Peter:                           Very powerful.

Sarah:                           Thank you.

Peter:                           So, Sarah, in this journey, no doubt when it first happened you started to seek a diagnosis so you could undertake therapies for a cure. That wasn't easy, I understand. You saw heaps and heaps of specialists and it took you a while to get it figured out, point you in the right direction. Talk to us about that, please.

Sarah:                           That part of my journey has been the toughest. Going through the medical system with, you read out my symptoms earlier and they're quite severe. For example, I went to hospital and had all these nasty sorts of tests on my brain. Unfortunately, nothing showed up in the tools and the scans that the hospital had and I've had to seek alternative diagnoses or doctors.

That was really frightening to be put through the medical system and being told, "Oh, this is all in your head because we can't see it in your blood or we can't see it on a MRI." That was really difficult and to keep believing in myself that, yes, something was wrong.

I did see a lot of specialists and that's where it was tricky. With my range of symptoms, I needed someone that would look at the wholistic picture and that's not something that, say, Western medicine generally is good at.

They're very good at zoning in on one thing and then forgetting about everything else. It took 18 months to find a doctor who would take me as a whole package.

Getting out of Limbo Doctorland

Peter:                           So, you found a Western doctor to do it? Or, was it an alternative?

Sarah:                           Yeah. A integrative GP. Finding him got me out of Limbo Doctorland, which-

Peter:                           Limbo Doctorland?

Sarah:                           ... which was not a nice place to be.

Peter:                           I understand you've been doing all sorts of therapies to move you from Sarah 1.0 to Sarah 2.0.

Sarah:                           Mm-hmm (affirmative).

Peter:                           Tell me, what have you been doing?

Sarah:                           I've done a lot of research myself, actually, to find things that would help. I'll just tell you, before I tell you what I've done, is I'd often see a doctor and I'd be sitting there looking like this Alzheimer's person and they'd say, "Sarah, you'll never get better. This is how you're going to be for the rest of your life. Forget sport, forget triathlon, forget ocean marathon swimming. Here's a script for an antidepressant."

Peter:                           Oh, no.

Sarah:                           It made me so angry and I was in that brain fog and had no idea who I was but I knew that this person is lying to me or had a false impression and giving up way too early.

So, I've sourced these rehabilitation work for my brain, myself. Some of these you'll probably know or they're just normal habitual things that people do. Like, I've been going to yoga every day. I mean, most days. I think I've done 250 classes in the last year, so I made sure I got up there every day. I've done tai chi, qi gong, which has been around for 5,000 years.

These things we know about, but I think it's just being committed and dedicated to relearning the patterns and the rewiring the brain, because that takes time. It's very tedious.

I mean, think about when you were a kid and how long it takes to learn something like ride a bike or learn to write your name. So, I'm re-learning some of those things.

Peter:                           And you're focused. When you started yoga, for example, I imagine you weren't all that good at it?

Sarah:                           No, I'd never done yoga. I thought it was boring. It wasn't fast enough.

Peter:                           Fast?

Sarah:                           Yeah.

Peter:                           But you had to focus and you kind of knew, instinctually I guess, that you weren't good at it then but if you did it regularly, consistently, there was a possibility you could get good at it, which was pretty much the theme of your rehabilitation, it seems to me.

Sarah:                           Repetition. With neural pathway rewiring it's repetition and focused work and that's the best way to get neurons to fire together again. I guess that's the phrase. But it was very important to do yoga and things like that, especially the breath work in yoga.

Earlier, we talked about how the part of my brain that controlled my breathing was inflamed. It was injured. I had sympathetic overdrive, so basically I was in fight or flight for nearly two years. That's like adrenaline and heart racing. So, to go to yoga every day was actually a life saver for me.

For a symptom like that, I mean, you can't take a pill for that but you can do things. I had to trust that it would work. And here I am. Thank God I did.

 Another fun thing or sort of fun was hypnotherapy. I had never tried that before, but that helped get my brain out of this... I was in like a constant nightmare situation. Especially I was so frightened I didn't know who I was or where I was living. The hypnotherapist helped me think of positive things and same with counselling and therapy and meditation, as well, which I would do every morning and night. That was important.

But the main therapy that's made a really big difference is the main injury that I've received, which is to do with an auditory processing. Which means the part of my brain that processes sound was inflamed or injured. My ears are fine. My hearing is perfect, but when the sound enters my brain, my brain doesn't know what to do with it.

And it gets really frightened when it hears loud noises, for example, or if someone speaks to me quickly about a new topic that I'm not ready for, I'm like, "Ah, shut up. I can't handle it."

That's been a big part of my rehabilitation. Recently, I had my auditory processing tested. That's not a hearing test. This is to test what's going on in my brain. I suspected my left ear was a bit funny because I couldn't hear things out of that side. What I found out was overall, I've got 25% hearing of a normal person.

Peter:                           So, that's your hearing? Or your auditory processing?

Sarah:                           Oh, sorry. Auditory processing.

Peter:                           So, auditory processing is what the brain does with what your ears hear.

Sarah:                           That's right, yes.

Peter:                          So, you've got 25% of what you should have in terms of processing what is coming into your ears? 

Sarah:                           Yeah.

Peter:                           Wow.

Sarah:                           So, three quarters of what I'm hearing is not being put in my brain. I see a lot of lips moving.

Peter:                           You learned to lip read?

Sarah:                           In a way, yes.

Peter:                           Yes.

Sarah:                           Well, a lot of communication is non-verbal, so luckily I can read body language and can lip read a little bit.

Peter:                           The sound is going in. Your brain's only getting 25% or whatever it is, so you're filling in the gaps of that meaning by looking at people's physical appearance, their lips, their-

Sarah:                           Tone of voice, yeah. nAnd making an educated guess of what they're going to say next.

Peter:                           Right, right. This is what kids who have auditory processing disorder must be doing in classrooms?

Sarah:                           I imagine so, yeah. Yeah. And it's so confusing and it's so fatiguing. Like, I try so hard to process what I'm hearing all day and I go to bed I'm exhausted. So, I can only imagine what a child in a classroom is going through. And then the teacher's talking to them all day.

Peter:                           Yeah, there's all this noise around, the other kids and everything.

Sarah:                           That's right.

Peter:                           This outing you're having today, coming from home an hour and half to hear, sitting here talking to me, recalling this stuff, answering questions, is that going to be tiring for you with this sort of processing issue you've got?

Sarah:                           Yeah. I'm already starting to feel quite fatigued and the lights in this room are starting to feel a bit bright and your face is getting a bit blurry.

Peter:                           All right. Okay. Well, we'll get to the end of this, soon.

Sarah:                           I'm getting used to feeling like that. Yeah, it takes its toll because I'm putting more energy into trying to listen. But what I was saying before about my left ear, in the left side, when I'm in a noisy environment, actually, like, say, a café or there's background noise like a TV is on or something, the auditory processing in my left ear goes down to 1%. I'm basically not getting anything in the left side of my ear.

Peter:                           So, whatever is coming into your left ear, in the brain it's only getting a tiny bit of it. Is that what you've just said to me? Yes?

Sarah:                           Yeah. And that's when there's background noise. But in a quieter room like this, it's manageable. But something I love to do is go out with my girlfriends, have a cup of tea, and I just cannot do that at the moment. It's really disabling and it's invisible, so nobody has any idea why I'm-

Peter:                           No, you wouldn't.

Sarah:                           ... having a meltdown in the middle of a café.

Peter:                           Oh, my gosh. Yeah, because you look like a normal healthy young woman, right?

Sarah:                           Mm-hmm (affirmative).

Peter:                           But you've got this massive disability that's been caused by this brain inflammation.

Sarah:                           Mm-hmm (affirmative).

Peter:                           So, in your view of Sarah 2.0, we're skipping ahead here a bit to the future, will Sarah 2.0 overcome this auditory processing difficulty?

Sarah:                           Yes, she will.

Peter:                           Very good.

Sarah:                           It's just a matter of time. I mean, with most things, it's a matter of time, I think. The therapies that I've found for auditory processing have helped and I'm repeating the Fast ForWord program that I did earlier in the year.

Peter:                           And you found that through reading Dr. Norman Doidge's book, The Brain that Changes Itself.

Sarah:                           I did.

Peter:                           Yes.

Sarah:                           Thank God he had written that so I could find this and thank goodness the internet is around so I can source. This has come from America and luckily I can access that now.

And I've added two new programs to my list. Reading Assistant, which is a program on the computer where I have to speak into a microphone and the computer hears what I'm saying and it corrects me as I go.

Actually, I've found that very tiring, of course, but my family have said that they've noticed I'm speaking better and clearer, because I was speaking really softly. In reality, it sounds like you're whispering to me and everybody, it's like they're whispering. So, then I whisper back because I'm like, "Oh, well, everyone's speaking very softly."

Peter:                           Oh, I see. Right.

Sarah:                           So, Reading Assistant, this program having to speak into the computer has made me pronounce my words better. I had no idea I was speaking differently.

Peter:                           Right. So, Reading Assistant, you're reading a text on the screen.

Sarah:                           Yeah.

Peter:                           And you're reading it aloud.

Sarah:                           Yes.

Peter:                           And if you make a mistake, the computer says, "No, it wasn't that word it was this word."

Sarah:                           Yeah, I would just skip half the sentence.

Peter:                           Right. Okay. So, how long have you been doing that?

Sarah:                           Two months now.

Peter:                           And you've said that seems to be making a difference to your ability to speak clearly?

Sarah:                           Pronounce words. And it's helped with coordinating my breathing. I said earlier my automatic breathing was injured. When you speak you need to breathe deeply and with your diaphragm, so for me to do that that's where the yoga comes back in.

Peter:                           It's all connected.

Sarah:                           It's all been a very wholistic approach to this. I do a little bit of everything each day.

The other really great sound therapy that I've done is another I found in the Doidge book, and he's not paying me to say this. There's a therapy where I wear headphones, really good quality ones, and every day I listen to a certain frequency. The theory is that my eardrum has become damaged from the inflammation and it's forgotten how to pick up different frequencies.

So, every week I have a new frequency and I listen for a little bit longer. It's like I was told training the eardrum like a muscle. Like you'd lift weights, every day I listen to a little bit more. It's very slow. It increases by one minute each day. It's a tedious process but already I am noticing differences like my tinnitus has significantly gone away. It's still around but it's become a lot less annoying.

Peter:                           And tinnitus was something you didn't have before?

Sarah:                           Oh, I had it when the heatstroke and the brain inflammation.

Peter:                           But prior to that.

Sarah:                           I never had it before that, no. It just came on suddenly. And then I've been able to watch a movie for the first time, because I haven't been able to hear what people are saying. I watched movies with subtitles.

Peter:                           Wow.

Sarah:                           Oh, this is such a joy. I've been able to call some friends and have a conversation. Having an auditory processing disability, if you want to call it that, is so isolating, so socially cut me off from everything. I mean, I can still text people but there's nothing like hearing your friend's voice and having a chat.

Peter:                           So, I'm imagining all these children, I don't know what percentage, there's a significant percentage of the population that has auditory processing disorder, and so they will be experiencing the sort of things that you've been talking about.

Sarah:                           Yeah. I can't imagine.

Peter:                           The isolation and the difficulties communicating and keeping up with conversations. I mean, if we started talking to each other and there were three or four people in this room, how would you go with following that conversation?

Sarah:                           I would not cope well with that. Because this is a one-on-one I'm doing all right. But that's the other thing. My brain can't switch off certain sounds. So, at the moment, my eardrums are focusing on your voice and the frequency. It's trying to block out the background noise. Like, I can hear the air conditioner. It's quite loud. But you and Nicole here probably can't hear it.

Peter:                           I didn't. Nicole? I didn't hear that.

Sarah:                           It's quite irritating to me. And I can hear electrical plugs that are plugged into the wall. There's like bzzz. It's almost as if my ears are set at the wrong frequency. As I understand, that's what children with autism have.

Their ears aren't set frequency of the human voice so they miss things. So, I feel like I'm a bit in that sort of situation. So, if you put three people in the room now, I would have trouble switching between everybody's different voices and then following the topics.

Peter:                           But you will get there.

Sarah:                           I will get there, yes. The brain can learn. It can relearn. We've just got to stick at it. Yeah.

Peter:                           Well, you're living proof, aren't you?

Sarah:                           Thank you.

Peter:                           You're writing a book. Before we talk about the future a little bit more, you're written a book.

Sarah:                           Yes, I am. Well, it started as a blog about a year ago when I couldn't speak. I just had enough brain power to start to and my emotions had just started coming back and I was like, "This wave of grief is coming over me," so I was like, "Okay, I have to do something with this or it's going to turn into something nasty." I had to get it out, so I started writing a blog each week, which was a big effort. Like, it took me three weeks to write, I think, 600 words.

Peter:                           I read some of those earlier blogs.

Sarah:                           Thank you.

Peter:                           So I should get back and re-read them. Or, I'll wait for the book.

Sarah:                           You can wait for the book. I've just continued on. I kept writing. And now that's continued on. I've written about 100,000 words. I mean, it's not edited. It's like a verbal vomit. When I have a bit more brain power I can edit it into something cohesive.

That's part of the process of when you go through such a life-shattering experience that I need to go through that writing a book to understand who I am now because I'm not who I was. I didn't have a near-death experience but I really feel like my mortality now and I feel like I lost lots of abilities and skills and I really feel life is so precious.

Every bit of sound, hearing, I get back and every new word that I learn to speak again, it's just such a gift. That's just changed my perspective and I need to be able to express that and get that out.

Peter:                           So, am I hearing that there are some positive things about this experience like your ability to feel the world more intensely? Is that what-

Sarah:                           Feel in my heart, yes. I feel life more intensely. I mean, I'm not saying this is easy but I'm trying to find the meaning in the suffering because that's the only way to heal, as I understand. Now I feel like I'm going to cry. Yes, it's been very special to be given something like this. I mean, I'm 32 now, but I feel so much has changed inside me. We'll see where that goes.

Peter:                           Well, it depends who it's given to, too. I mean, it was given to you and you had those attributes of the focus and the goal setting and the celebrating success, all of that stuff. For someone who didn't have that, this thing could have ended up very differently.

Sarah:                           Yeah, that's a good point.

Peter:                           Do you have a title for the book yet?

Sarah:                           At the moment it's called My Happy Place.

 And how that has changed since before and during and after. And what I hold onto now is my safety and my happy place. It's definitely changed me on a soul level because my brain got taken away, my identity got taken away, even my bodily functions like heart rate, blood pressure, got taken away. So, I thought, "Who am I after being disconnected from my body and my memories?" So, that's what I'm exploring. I'm still writing it so we'll see how it ends.

Peter:                           I'll look forward to seeing the story.

Sarah:                           Thank you.

Peter:                           We're pretty much towards the end of our conversation. I can see you're getting tired.

Sarah:                           Mm-hmm (affirmative).

Peter:                           We've covered a lot of ground. Thank you for sharing all this with us and adding the update from last time. Just before we finish, can we finish on this?

You've said that you went to someone who said to you, this is a Sarah 2.0 thing, that you need to have more appropriate goals to work towards than becoming a champion triathlete or whatever. Can you just talk to us about that as a final end of our discussion today?

Sarah:                           Sure. Yeah. This particular medical professional was trying to rein me in. I guess this was early on, a couple months after the injury had happened. I was still on my trajectory to sport and glory. That word, thinking of more "appropriate" goals really stuck in my mind. "This person has a point, I guess." I said, "We'll see what happens," but these are my more appropriate goals for the future.

I will continue on my auditory processing because my goal is to just sit in a café and have a cup of coffee. Well, I don't drink coffee but cup of tea with my friends. I'd like to swim in the ocean without my blood pressure dropping and my heart rate going down and my thermoregulation going. That's another one.

I really want to say a speech because then I would feel like I've overcome the word recall and the short-term memory loss and just like then I stumbled over my words. That would be something. And to get my memories back, like really solid memories. And publish my book.

Peter:                           Well, that sounds like they're very, very appropriate goals and I'm sure you'll achieve them.

Sarah:                           They're appropriate.

Peter:                           You'll achieve them all. And once you've done that, no doubt you will set yourself some other ones.

 

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