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Rebuilding a Brain after Chronic Inflammation: Sarah Rasborsek's Story

Posted by Peter Barnes on March 17, 2019 at 1:03 PM

Can you imagine what it would be like to suddenly forget your past, to have pounding headaches, dizziness and tremors?

To be unable to find words when you wanted to speak?      Sarah Rasborsek

To experience an extreme loss of energy, have your blood pressure drop dangerously low, and find yourself uncomfortably sensitive to sounds and sunlight?  

And to feel that as well as having no past, you have no future? 

Sarah Rasborsek did.  She experienced all that and more when she "fried her brain" and suffered chronic brain inflammation during a triathlon on Queensland's Gold Coast in January 2018.

Since then Sarah has been rebuilding her brain, using multiple therapies including cognitive training described by Dr Norman Doidge in his book, "The Brain That Changes Itself".

Sarah told me her story - it's one of tragedy and suffering but it's also inspirational and hopeful at the same time.

Listen to  our discussion on the Learning Capacity Podcast

 

 Topics covered

  1. Rehabilitation after brain inflammation

People & organisations mentioned

  1. Monique Peters at Learning Well MacArthur
  2. Dr Norman Doidge
  3. Dr Bernie Siegel
  4. Celine Dion

Resources/books/articles/places mentioned

  1. The Brain That Changes Itself by Dr Norman Doidge
  2. Fast ForWord – cognitive and language training program
  3. Gold Coast, Queensland, Australia

 

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

Episode 93 of The Learning Capacity Podcast

Rebuilding a Brain After Chronic Inflammation: Sarah Rasborsek

Peter Barnes:                  Welcome Sarah.

Sarah Rasborsek:           Thank you. Thanks for having me.

Peter:                                What happened to you in January 2018, on Australia's Gold coast, on a very hot, humid day.

Sarah:                               Well, I'd entered a triathlon race that was a qualifier for the triathlon world age group                                                                  championships, which was my biggest dream. Actually the year before I'd represented Australia,                                              and I'd raced in Rotterdam.

                                           The next year coming up was going to be held on the Gold coast, in front of the home crowds. I                                               was very excited. I wanted to race with all my girlfriends, so it was a big deal.

Peter:                                 And you're an elite triathlete.

Sarah:                                I would love to be. No, I'm like a master's level.

Peter:                                 Oh, well that's-

Sarah:                                 Let's clear that up.

Peter:                                  That's pretty high up on my totem pole of triathletes.

Sarah:                                  Yeah, okay. So this sort of race I'd raced like a dozen times, in those similar hot conditions, but                                                for some reason when I crossed the finish line I started to get his incredible headache,                                                                pressure in my head. I felt like my brain was going to explode out of my skull. And then after                                                    that I don't really remember what happened. It all sort of goes blank.

Peter:                                   Wow. So we're a year and a bit more on from that, and we'll talk about what happened to you                                                  in that year, but before we do that, can you just tell us a little about your life before the                                                              triathlon.

"Life was good, I was living the dream"

Sarah:                                 I was living on the near North Coast, New South Wales, in a small town, and running my                                                             business, marketing business, and being involved in the community, which I really enjoyed. I                                                     was president of the local tri-club, involved with this lovely mermaid swim group, which was                                                     just great.

                                            And like I said, I represented Australia the year before, and just before this race, just done my                                                  first ocean marathon swim, which is a 10K swim, which, for me, was opening up a whole new                                                    sport for me. I do like triathlon, but I was like, "Wow this is really cool." I could do something                                                      with this marathon swimming. So yeah. Life was good, I was living the dream.

Peter:                                   Yeah, sounds like it.

Sarah:                                  My dream.

Suddenly the world changed for Sarah

Peter:                                  Sounds like your success in multiple areas of life, and things were going really well for you.                                                        Then you did the triathlon. And you have that terrible feeling afterwards. So can you describe                                                  what your physical, your emotional, how your thinking processes were affected.

                                              I've read some of your blogs, and you mentioned things like headaches and vertigo, loss of                                                        energy, low blood pressure, lymphedema, extreme sensitivity to sounds and sunlight.

                                             Do you want to talk about some of that, and maybe other things that might have happened to                                                 you that are just awful?

Sarah:                                 Yeah, when you read that back to me, it makes me feel sad. Yeah, I remember in the race I was                                               starting to feel a bit ... I must have started. The race was going to normal. I did my normal time                                                 and everything. I think I did a really good swim, but I remember feeling very emotional at the                                                   back. I wanted to cry, and I don't know.

                                            That must have been the beginning of what was happening to me.

                                            But yeah afterwards it was immediate headache, and migraines. It happened so suddenly that I                                              just couldn't hear anything, the world was too bright, it was too loud, it was incredible that it                                                    could happen so fast, and I had vertigo, memory loss, double vision, constant nausea, really                                                      weird feelings. It was just horrible. I hate remembering it, actually.

Peter:                                  I'm sorry to ask you.

Sarah:                                  Yeah, so ...

Peter:                                  And when you say fast, was it ... You came off the triathlon, and then all of this then happened,                                               or was it over a period of days or weeks?

Sarah:                                  Some symptoms happened straight away, and then some developed over a six month period,                                                  but I definitely very quickly lost all my cognitive skills, and I deteriorated really fast, so my                                                          memory, and I couldn't run meetings.

                                              I remember sitting in a committee meeting and I was seeing double vision. I had to get                                                              someone to read the agenda, because I couldn't even talk or read anymore. So some things                                                      just happened very fast.

                                             My hair started falling out, I had a tremor in my hand. Sometimes I'd start passing out in the                                                     middle of the day. I was all dressed for work and then ... I work from home office, so I passed                                                   out for three hours, then I wake up and I was all dressed for work, and I was like, "Where am I,                                                 what's happened?"

A total brain shutdown

Peter:                                   Sounds terrible.

Sarah:                                  It was.

Peter:                                   So your life just totally changed?

Sarah:                                   Yeah, it was terrifying. My brain just shut down.

Peter:                                    And what did you do to get help?

Sarah:                                   Well, I was in such a blur, I couldn't even ask for help. I was in a really bad, bad way.

Peter:                                    But did you eventually see doctors, and medical people, and ... So, Sarah what did the                                                                medical people say about what happened to you, and what did they tell you about your                                                            prospects of recovery?

Sarah:                                   I was told I had brain inflammation, and actually chronic inflammation and lymphedema                                                           throughout my whole body. So I basically had cooked myself, unknowingly, but yeah. Sadly it                                                   had gone throughout my whole system.

                                               So that swelling, all that pain I could feel in my brain was fluid build up basically. So they were                                                   confident that they could reduce the inflammation, but that's not really the end of the story                                                     for me, because of how inflammation works, and the effects on neurons in the brain.

                                               It does some damage while it's up there, and swells.

                                              So some connections get lost, or they get shocked, or they go to sleep. So they're not really                                                      sure, but it causes a cascade of nasty things.

Intensive rehabilitation schedule

Peter:                                   What's been your rehabilitation schedule?

Sarah:                                  So, I had six months of cold laser therapy to reduce the inflammation in my brain. And that                                                      involved a trip to Adelaide for intensive treatment.

                                              I had three hours daily of lasers being shone into my brain and all over my body, because it                                                      was everywhere. So that was quite painful and tiring, because my body had to process                                                              everything and get it out. And that took a good six months to work.

                                             And after laser finished, we had to ... well, I naively thought that it would be all over and I could                                               go back to my old life that I was enjoying, but actually, it wasn't finished, and that's when I                                                         discovered that I'd lost a lot of connections, and I may have to relearn a lot of skills that I                                                           thought I'd have for life. So that's when my rehabilitation is really starting.

                                             And that's the stage that I'm at now. And where I need to retrain my brain. I'm about two                                                           months into intense rehab.

Rocking chair, cold laser, yoga, meditation

Peter:                                 Right, we'll have a chat about what you're doing to retrain your brain in a bit, but before that, I                                                want to ask you about you're using a rocking chair to help restore your balance. Can you tell me                                              about that? And any other unusual, or old-fashioned, or alternative, if you like, if that's the word                                              for it, treatments that you've tried, and what worked and what didn't?

Sarah:                                 Yeah, sure. I'm really fighting to get my life back here, so I was willing to try anything and, you                                                   know, if anything seemed unusual, I was happy to give it a go. And the rocking chair came up,                                                   because I had severe vertigo for ten months.

                                            Something in my brain, my balance sensor was unwired so the rocking chair came up as a                                                        treatment idea. So I combined that with another treatment that I found, which was a machine                                                  that moved me in a 360 degree angle.

                                            So I did a bit of rocking at home, and go to this other treatment. So them together stimulated                                                  my inner ear, I guess, and helped the vertigo to go away, which is lovely, because vertigo, if                                                        anybody's had it, it's so debilitating. You just can't do anything.

                                            Some other things that I've done, I've got a big, long list here, that ... Well the laser therapy that I                                              had is considered alternative in Australia, but around the ... Yeah?

Peter:                                 You said it was cold laser therapy.

Sarah:                                 Cold laser.

Peter:                                  For people like me, who don't understand what that is, what is cold laser?

Sarah:                                  Well, hot laser is to let's say cut things, like laser eye surgery. Cold laser is a gentler type of                                                        light. It actually is a healing light, and it's the same wavelength as the sun, so it goes into your                                                  cells, and it helps the cells actually heal themselves so that they do the work in your body.                                                        Sometimes cells get shocked, or they turn off, so sunlight help ... I mean the laser helps them                                                    do that again.

Peter:                                   So laser, the rocking chair, and the 360 degree movement thing all helped you? I understand.                                                  What else?

Sarah:                                  Just started yoga and meditation, which has been around for thousands of years, so it's quite, I                                                guess, old fashioned, but it's been wonderful to retrain my parasympathetic nervous system.                                                    Just help my breathing, because that's all gone out of sync, I guess.

                                             And during meditation I have some amazing experiences of flash backs of ... because I had                                                       amnesia. I've lost all memory of like, say, where I went to school, or primary school. I had no                                                     idea here I went to school. So I'd sit there and meditate, and then that would start to come                                                       back. So all these things combined have been really incredible.

Peter:                                   That is incredible. What sort of meditation are you doing?

Sarah:                                  To be honest I can't remember. It's a blend of ...

Peter:                                   Okay.

Sarah:                                  Whatever they do out there at the studio.

Peter:                                   It's working. It's working for you, though.

Sarah:                                  That's right. I don't have time to get into the details.

Peter:                                   Okay.

A blog to practice writing, spelling and grammar

Sarah:                                  I'm also writing a blog to practice my writing skills, my spelling and my grammar, which just                                                     disappeared on the day of the triathlon, which is a struggle, but it's helping.

                                             Everything I can do to help myself. And also I've just been doing some hypnotherapy, which has                                               been surprisingly incredible for my brain to ... My brain's quite lost in where it's at. It's hard to                                                   explain, but I wanted to put some good vibes back in there, and good connections with positive                                               thoughts and positive memories, because it's been through so much distress, I guess.

Peter:                                   Yeah. Have you taken any, or been prescribed any drugs, pharmaceuticals?

Sarah:                                  No, no I haven't taken anything. As far as I know there aren't any anti-inflammatories that can                                                  cross the blood-brain barrier, so that's why the laser was the option. Even people that have,                                                      say, a concussion or a brain injury, I believe they don't have any drugs for them, but I'm not an                                                expert, but yeah, nothing was offered in that sense, for me.

Peter:                                   Right, and now one year after the triathlon, how would you describe you now? How are you                                                      feeling? How far have you come?

Exhausted at the end of each day

Sarah:                                  I have come a long way. It is still early days back in the recovery. I'm taking one day at a time.                                                    Each day is ... To get to the end of the day, I think, is an achievement with all the things that                                                      I'm relearning to do, and I go to bed each day exhausted with my rehab, so that's where I'm at.

                                              I don't have any plans at the moment for the future, but I'm just focusing what I can do with                                                      what I've got at the moment. I've still got really severe light and sound sensitivity. So I'm                                                            wearing earplugs, and I can't get out in public much at all, because it just irritates my brain.

                                               I've still got a tremor in my hands, sometimes low blood pressure and circulation, which                                                            makes it awkward if I'm out somewhere and I need help, and memory loss is still quite                                                              prominent, and my speaking skills, you can probably hear. Sometimes I just can't find the                                                          words, or I'd like to make sentences up, but it's just so much work for me at the moment. I've                                                  actually, to go on this broadcast, I've actually done a lot of prep.

                                             Probably about a month or five weeks of prep, and I've made a lot of notes, and I'm trying to                                                     read them, but I'm still struggling with that. I just want to be honest with you, but ... no, sorry,                                                   my-

Peter:                                  Well, you're doing really well. I mean what you're talking about is just a fascinating, and scary,                                                    and also inspirational.

Sarah:                                 Thank you.

Peter:                                   I mean clearly you've focused on rehabilitating yourself, you just haven't sat around, or lie                                                        around, you've really worked. You've been working from everything you're telling me. Have                                                      you ever given up hope of recovering in this last 12 months? Did you ever just despair that this                                                is how you're going to be for the rest of your life?

"I had lost all sense of who I was"

Sarah:                                  Well, sometimes I guess. No one could ever tell me what really has been wrong or what my                                                      outcome might be. My greatest fear in life is going to prison, being stuck in cell and just                                                              wasting your life away, and not being able to do anything. And when my brain shut down, after                                                the triathlon, it felt a bit like that, that I was shut down, and I was stuck in my body, and I                                                            couldn't communicate, and I couldn't say anything. I just lost all sense of who I was.

                                              In those bad moments it felt pretty bad, yeah. But as time has gone on, and I just thought I'll                                                    just hold on, and do one more day, and if one more day was too much, I'd just to one hour and                                                if one hour was too much, I'd do a minute. So as time has passed through that, I feel a bit more                                               hopeful about the future, yeah.

Peter:                                  Good, good, good, good. And tell me about the effect on you of the social isolation you must                                                   have endured since the triathlon. I mean before then you had a challenging career as a                                                             marketing professional, you were running your own business, you were interacting with many                                                 people, you were participating in sports with hundreds of other people, you had a social life.

                                             But after your brain inflammation, all that disappeared, didn't it? And you were sort of on your                                                 own. You just mentioned in some ways it felt like you were in a prison cell.

Sarah:                                Yeah, it felt like I was trapped inside my head, in my body. Yeah. You're going to make me cry                                                  again. Yeah, I come alive when I'm with people. I need to be around people. Like you said, I was                                                always in a crowd, or doing things.

                                            So I guess part of the injury, the loss of my community, and especially living in a small town                                                      where you know everybody, has been heartbreaking, and I think some ways that's been harder                                                than other physical pain that I've had. The migraines, the headaches, they were just shocking,                                                  but you lose your place with your friends, and your girlfriends, it's just terrible. And I mean the                                                worst was I couldn't talk, so ...

Peter:                                  Wow, serious social isolation.

Sarah:                                 Yeah, for 12 months.

Don't know where you've been or where you're going

Peter:                                    In one of your blogs you write about how you lost memories of your past, and how, in your                                                       words, you don't know where you've been, and you don't know where you're going. How scary                                                 was that, or is scary not the way to describe what you felt?

Sarah:                                   Yes, it is scary. I mean I'm just reliving it as we talk it. There's always talk about living in the                                                         moment, and that is a really great thing to aspire to, but I can tell you, I've been living in the                                                       moment for 12 months, with no idea of my past or ideas about my future, so I couldn't                                                               connect, up in my brain, who I had been for 30 years, but I didn't even know that I'd run my                                                       own business.

                                               I'd trained myself for 18 months to go to the world championships in Amsterdam, and I didn't                                                  even know I'd done it. And I just like, what's the point of anything. I don't know where I come                                                    from. I don't know what I'm capable of. I don't know what my strength is, or am I a strong                                                          person, or am I determined?

                                               I just had no connection with where I had been. The things ... you know we all have an                                                              autobiography that we keep in our head, and we tell a story of ourselves. Of where you went                                                     to school, or what you did after that, and all your achievements at work, and I had lost all that.

                                              So, that's what I mean about being stuck in the moment without the past. And how does that ...                                                you can't use anything to inform your future. I didn't even know what I liked to do. That's how                                                   bad the amnesia was. I forgot I had dog.

Peter:                                    So the brain inflammation just totally untethered you from all of that? So you're sort of                                                             floating alone in a way.

Sarah:                                   Uh huh.

Peter:                                    Wow, wow. But now you're speaking with a lot of insight into what's happened to you, now, is                                                 it coming back? The past. And who you are, and your strengths?

Sarah:                                   It is gradually, and thank goodness, because I don't know how much longer I could've handled                                                 that. It's like being half dead and half alive while you're alive, but you don't know what's                                                             happening to you. So yes, it is gradually coming back. I woke up this morning and had a flash,                                                   or something like a flashback, and I was like, "Oh, I did that." So it is starting to come back,                                                         which is so nice.

The Brain That Changes Itself by Dr Norman Doidge

Peter:                                    And I understand you've been doing a cognitive training program to help retrain your brain to                                                 try, and recover some of the connections and neurons that were all scrambled, or lost, or                                                         burned out by the inflammation. That was inspired, I understand, by you reading Dr Norman                                                   Doidge's famous book, "The Brain That Changes Itself." Can you tell us what that cognitive                                                        program is, and is it helping, and how is it helping?

Sarah:                                  Uh huh. Yes, thank goodness for Dr Norman Doidge, and that I had read it about 12 years ago,                                                and it was in my brain. And luckily that little connection hadn't been lost, because I found it                                                      mentioned, a program called Fast ForWord, which sounded wonderful for me. And let me tell                                                   you, Peter, throughout this whole experience and meeting all these medical people,                                                                  neuroplasticity was not ever mentioned.

                                              It's not a word used in hospital. I was actually told to just accept here I was at, and just get on                                                    with my life, and get over it, and get some more therapy to help me accept my disability. So I                                                    did my own research and found this program, which really focuses on language, reading and                                                    speaking, that you can hear I'm struggling with, but it has ... I felt that was essential to my                                                          recovery.

                                              Like I was just saying before that I'd lost all sense of myself, and I was unable to communicate                                                  with others, and I was unable to communicate within myself, and it's hard to explain that to                                                     someone with a healthy brain. But for 12 months I didn't even have that voice inside my head. I                                               couldn't talk to myself.

                                              I couldn't say Sarah you're having a good day, or just keep going, Sarah. That ability had gone,                                                  so I knew I had to find something to help me.

                                              So luckily I found this program, and something about what Dr Doidge said in there was that                                                      this program does help with language, which I needed, but it also had this spillover effect                                                          throughout the whole brain, which I wanted, really, to latch on to. So I thought oh, if this can                                                    spill out all over into my brain, that would be great, because it needs a whole makeover, so to                                                   speak.

                                              I'm halfway through the ... Oh no, ten weeks into the three months program now, and I do an                                                  hour a day on the computer, of reading, listening, comprehension skills. It's written for kids, so                                                it's a lot of fun, but a lot of hard work. An hour on the computer, I feel like I've just training for                                                  a triathlon, like a 10K run, or something, that's how tired I am afterwards. And I have to go                                                        have a rest, so I know it's working.

Peter:                                   Giving you a workout, yeah.

Feeling the brain connections happening - a buzz of energy

Sarah:                                  Oh, yeah, yeah. I'm getting my training hits from that, because I'm missing out on the ... but it                                                  was incredible. In the first week of doing it, I felt ... Before my brain felt like a jumble. Like                                                          spaghetti up in my head, but after the first week of doing it, I felt this ... I actually could feel the                                                connections happening. I felt this buzz of energy, like a waterfall running down the side of my                                                  left side of my head, which is where all the headaches were.

                                              And it's just like oh, things are just working, and talking to each other, it's ... You know, before                                                  this injury I'd never thought about my brain, I'd never thought I could feel it, but now I've                                                             experienced that it's a pretty amazing thing that we have up in our heads.

Peter:                                   Wow, I'm almost getting goosebumps listening to you describe that.

Sarah:                                  In the second week of doing the program, my memory started coming back, even though this                                                  program's not focused on memory retrieval. I woke up and I remembered where I went to                                                        primary school, and I could picture it, and I could picture my friends.

                                             And that was incredible to get that back. And the program's about language and English and                                                     listening. So it spilled over quite quickly for me, which is so wonderful.

                                             By week three my parents were saying, "You're more talkative."  The big win for that week was I                                               was able to ring up a girlfriend, and she didn't answer but I left a voicemail, and I wasn't able to                                               do that before, and I used to get my words all jumbled up. Doing it a bit now, but not ... Before I                                               just had to send a text, so by week three I was able to do that.

More talkative, starting to read again, listening improved

                                             By a month I could start to read a book. I wasn't ... I could only read like a paragraph or two,                                                     and then put the book down, but even just the fact that I could pick it up and start to read. I                                                     mean I love reading. I read Anna Karenina when I was in primary school. So to be able to start                                                 to get those skills back, and remember I was saying earlier I couldn't even read that agenda in                                                the committee meeting, so ... And this is like 12 months after the injury.

                                             So it's just mind blowing what it's done for me. By week five I was starting to dream of talking.                                                 So I could start to ... was dreaming that I could hear myself talk in my head, and that was just a                                                 skill that had completely disappeared. I heard myself speak, when there was silence in my                                                         head. And you can not imagine having a silent mind until you've had it.

                                             It is the ultimate idea of ... you know that voice in your head going, "You better go do this, you                                                   got to go do that. Go get this done by the end of the day." But I didn't have any of that. It was                                                   very lonely and quiet up there. So to hear myself speak, it actually said, "Sarah, go back in your                                                 room." Must have needed a clean. Can you imagine that's the first thing I heard. And then by                                                   week five this really just opened up my world, right?

                                            By week six I could listen enough, because I was teaching my listening skills. I could listen well                                                  enough to go to yoga, gentle yoga class, and then listen to the yoga teacher.

                                            They talk a lot in those classes, you know, "Put your arm here, do this, bend over, do that." And                                                I was able to keep up and start some yoga. And then, you know, that's helped my other parts of                                              my rehab as well. But I couldn't even contemplate that six weeks before.

                                            And then it just kept getting better, and better by every week. I dream of writing my blog in my                                                head. I could just hear it being typed out in my mind.

                                            And then by week eight, I just had to start asking my family to stop finishing my sentences,                                                       because I would start a sentence, because I'd be like, "Uh, uh, uh, uh, uh." And then they would                                               finish it up for me, because I sort of had an idea of what I was saying, and I was like, "Why are                                                   they doing this. It's so irritating."

                                           But I didn't realize how quickly I had gotten some skills. And this whole process has been mind                                                 blowing, watching a brain come back to life when it's been shocked or stunned. It's been slow, I                                               guess, but fast in some ways, so ... that's it, sorry.

Peter:                                That's totally, totally amazing. And I'm amazed how you've kept a chronology of this thing, and                                                 you described what's been happening to you week by week, and that it's just ... You've                                                               obviously come a long way from way back when all that happened.

                                           And while you're using this cognitive program, this Fast ForWord, I understand you were getting                                               support from a learning specialist. A lady called Monique Peters from Learning Well MacArthur                                                in Sydney. Can you tell me how that worked and how it helped?

Sarah:                                Yes, retraining a brain is tedious, persistent, hard work, and it's not fun relearning things that I                                                learnt, say, in primary school, or before school. So having Monique here as my cheer squad                                                      leader has been essential. We talk once a week on the phone, and she encourages me to stay                                                  focused on my abilities, not my disabilities.

                                           On my progress, and not what I still can't do. And we celebrate the small wins along the way,                                                   because that's really important when you're building new neural connections. It just takes time,                                               and every little win is a win, because once ... I forget the saying.

                                            Once a connection is wired, then it stays with you, so ... unless you do another triathlon, but                                                      yeah, you know what I'm saying.

Peter:                                  Yeah, I do.

Sarah:                                 She also offers email support, so I can send her all my questions and get some tips, because it's                                               not easy to do. Brain rehab needs a lot of support. It's like supporting a child going through                                                       school. They need encouragement, I need encouragement.

                                            Monique and I were talking about this, that excitement, and joy, and happiness helps about the                                              task that I'm doing, even though it's quite boring to be honest with you. We need that                                                                excitement that I'm getting better to help build the dopamine and the serotonin to help support                                              those connections really bind. So she keeps the energy up when I'm like, "I'm feeling so tired                                                     from doing my exercises." And .... Sorry.

A cognitive coach helps when the going gets tough

Peter:                                 It sounds like Monique Peters is, in the cognitive world, the equivalent of a coach you would                                                    have in the sporting world. It sounds like she's been motivational, which is a real ... One of the                                                  big, big jobs of a coach is to motivate the athlete, or the participant, or the student to keep                                                        going when the going gets tough.

                                            Is that what Monique's been doing for you, I understand?

Sarah:                                Yeah, absolutely, and she got the big picture in mind, which I haven't been able to keep in my                                                  head. I haven't had any ideas about the future, then she's kept me going, moving me forward.                                                  And yeah, reminded me how far I've come.

                                           Another key thing about how we talk and keep this space positive, is that we focus on the                                                         fascination of the brain relearning, and not the frustration of me having to do my grammar and                                               spelling skills, and my singing skills that I learnt, maybe when I was like eight.

                                          And she actually pushes me too, because I have done well, but she gives me new challenges, like                                            I get to do my timetables soon, which I'm really pumped about. And she also got me to start a                                                  video blog to practice speaking as well, so you know, anything that I can keep pushing myself and                                            keep my brain ... Use it or lose it, right? Keep it going.

Peter:                               Wonderful, wonderful. Hats off to both of you.

Sarah:                              Thank you.

Peter:                               One of the things you wrote about in your blog was about music and Celine Dion specifically, and                                            how you used to have ... You couldn't remember when you heard a Celine Dion song now, you                                                couldn't ... You'd lost all the memories you had of hearing her music when you were younger.                                                  What were your feelings about that, and has that changed? Have those memories come back?

Sarah:                             Yes, you're right. I had lost all association with music, because music can remind us of a time, or                                             a place, or a feeling, you know. You put music on to change a mood of a room, right? I had none                                             of those lovely memories, and no memories of listening to Celine as a kid.

                                         But what I was saying in that blog that you're talking about, was I couldn't even hear music. I had                                             no ability to process music.

                                         So it's like ... It's hard to explain. It's like ... You know when you go traveling in a foreign country,                                               and you can hear people talking the other language. You can hear it's noise, it's sound, but there's                                           no meaning attached to the words for you, and you have no idea what they're saying.

                                        And that's what it was like for me for 12 months. Could hear music, but it had no association, or it                                          didn't sound like a song to me. It just sounded like, "Buzz." It was irritating. So I had to turn                                                        everything off.

                                         But about 10, or 11 months after the heatstroke I just randomly, this is after the laser                                                                 treatment, I was at home and I just ... Couple of lyrics just wandered into my head. It wasn't                                                       playing on the radio, or anything. It just wandered into my mind. And I heard some Celine Dion                                               song. And I thought, "what? who is that?" because my brain is silent, dead. And that was the                                                     moment I thought, "Oh, I think my brain's waking up. I think maybe I can ..." I had some hope                                                   after that.

                                        It's been really bizarre, and I don't know if I can explain what it's like to live in a silent, meaningless                                          world, but it's a depressing place. And for me to hear something again was ... It just really lifted me                                          up again.

Peter:                              I'm sure. Amazing. And I guess the cognitive training, the Fast ForWord work that you're doing                                                  with Monique Peters, has helped that. The lack of language and the processing connections,                                                    and the listening. Would you agree with that? Am I right there, or am I off the mark?

Sarah:                              Yeah, absolutely. When ... I'll just go back. When I heard that little Celine Dion lyric, it was just                                                    two lines, and then it was gone. That was before I started the program, and I couldn't listen to                                                  music. But now that I've ... ten weeks in I can now tolerate some music, and I can start to listen.

                                           I mean I'm listening to you now. Thank goodness you're not talking too much. And yeah. It's                                                     given me some skills to listen. I couldn't even watch a movie. I'd have to put it on silent with                                                       subtitles, because I couldn't understand the words.

                                            They were just talking too fast and my brain couldn't keep up with the speed. So the program                                                  has helped me, and given me some skills, and that quality of life back again.

Peter:                                 So what advice do you have for someone who finds themselves in a similar brain situation that                                                 you've experienced?

Sarah:                                 Well, I've got lots of ideas. Maybe we could do a whole podcast about this.

Peter:                                  We could, we could absolutely do that.

Sarah:                                 Look, there is a doctor that I love, Dr Bernie Siegel, and he was a surgeon in the 80s, a cancer                                                   surgeon. And I always follow his work.

                                             He said, "Be an exceptional patient, be an active participant in your recovery and your                                                               treatment plans. Ask questions, be annoying to doctors, shake their hands, ask them to look                                                     you in the eye, and get the help that you want to get your questions answered, because it's                                                       your life, really." So I take my lead from him, and it helped me move forward with my rehab                                                     ideas.

                                              I'd say to anybody who's in a similar situation, you are the expert of your brain, and you know                                                 what's normal for you and where you want to get back to. I was lying in hospital. I had low                                                         blood pressure, couldn't get out of bed, and said, "Look doctors, I can't remember anything. I                                                   don't know what year it is, I don't know what country I'm in. Don't even know my middle name,                                               or that I even have a dog." Well, my sister reminded me.

                                            So they say, ""Okay, here's a memory test." And because I passed the memory test, I was able to                                              read clock faces, and to identify an elephant, they said, "Oh, there's nothing wrong with your                                                    memory. So get out of here, basically."

                                             But only you know what you're capable of and what you've lost. You really got to fight for what                                                 you want to get back, which is hard. Those are challenges of any sort of invisible injury or illness                                               that people cannot really see, but you know.

Peter:                                   Great. Great advice.

Sarah:                                  Thank you.

Peter:                                   So, anyone who is in this situation, oh it's just extraordinary what you've done. And now one                                                    year after the triathlon how you seeing your future now?

"I call myself Sarah 2.0 - like a software upgrade"

Sarah:                                  To be honest, I ... It's hard to answer that. I'm not being negative, but I don't know how long it                                                  will take for rehab, and I haven't got any plans. I'm just leaving an open ... obviously every day                                                  I'm doing everything I can. Everything I do is to build a new neural pathway.

                                              I don't waste my time doing anything else, but I've got to just keep going in that way. For now, I                                               don't know what recovery looks like. I don't know ... This has obviously changed my brain. It's                                                   changed how I'm wired, so you know, it's going to ... The new me will be different, and I call                                                       myself Sarah 2.0, which is like a software upgrade.

Peter:                                   Sarah 2.0? That's ...

Sarah:                                  And that's all I can say. I don't know when it'll be released. You'll have to just wait patiently. But                                                what I try to just do every day is accept who I am now, and who I might become as a result of                                                    this, and the new connections that I make. And that's all I can do for now.

Peter:                                  Sarah thank you so much for sharing your story. It's a story of tragedy, but it's so inspirational                                                  to hear how far you've come and how you focused and took charge of your rehabilitation. 

Sarah:                                  You're welcome. Thank you for having me.

 

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