Reaching the 18 Month Milestone post brain haemorrhage with The Brain Game Changer Host Melissa Gough
Welcome to Season 2 of The Brain Game Changer podcast. I am your host, Melissa Gough. As we conclude the final episode for season 2, it is just me in front of the mic that probably also has a dash of vulnerability with a spoonful of feelings and honesty as I share some aspects of my journey in getting to the 18 month milestone post brain haemorrhage.
I discuss experiencing a subarachnoid brain haemorrhage, where that took place in the brain and how it impacted every aspect of my life, especially physically and emotionally. The discussions were not easy as I was learning to navigate my new world, especially with those around me. I give some tools that have helped support my recovery and the continual journey of living a new way with a brain injury, that may be useful for yourself or someone you know going through their own adversity.
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Melissa Gough 0:05
Welcome to The Brain Game Changer: where heartfelt stories, awareness and education can change the game. My name is Melissa and in each episode, I talk with inspiring humans and organisations from across the globe, who share significant adversities, triumphs after tragedy, and those game changing moments to provide you with some useful tools and resources to take with you into your everyday life.
So today's episode is a little different, it's just me in front of the mic with my cup of tea that probably also has a dash of vulnerability with a spoonful of feelings and honesty as I sit with you and share some aspects of my journey in getting to the 18th month or the one and a half year milestone post brain haemorrhage.
It is also our last episode of season two. I cannot believe that I'm saying that out loud!
We'll be kicking off season three in the new year. But in the meantime, here we are. Those of you hearing the podcast for the first time, welcome! My name is Melissa, and I'm the Host and Founder of The Brain Game Changer Podcast. I'm usually sitting on the other side of the mic, being the host and interviewing inspiring humans and organisations to create awareness and education through the power of sharing stories and events, and talking about some resources or tools that have helped them and the many that they are supporting.
For our regular listeners, it is with gratitude that you are here again, thank you, thank you, thank you for your continued support and inviting me into your space. As I sit in this moment, I reflect on the many layers and many different experiences that have happened in the last 18 months. I could do a whole season about this! In future episodes, I'll take themes and experiences and talk about them in a bit more detail. However, in this episode today, it is just an overview of walking this new adventure. Never in my wildest dreams did I ever think I'd be saying these words out loud…I have experienced a brain haemorrhage, I could have lost my life! There were times there that I honestly thought I was going to. I'm not here today to be all about doom and gloom. What I am hoping to achieve is to give a little bit of insight, some understanding, awareness, about this unique significant life changing event, so it may resonate for some of you or what it may do, is, it may also provide the opportunity for you to have a conversation with someone you know, so you can be in a position to hold space with them and possibly support them through their significant journey or adversity.
In episode eight of season one, I talked a lot about the day that the brain haemorrhage occurred and what was going on during my stay in hospital and where I was at the time that we were having that conversation. It was with the wonderful human Amy Voss who held space and support for me to share it with you. However, I will state again, I'm not a qualified medical practitioner, I'm an educator by qualification and profession. As it says on the TV commercials, if you are feeling any symptoms that you are concerned about, please seek professional medical advice and consultation.
We all have a brain. Yes, we all truly do!
Even the times when you're looking at your partner, or family member or loved one or even your pet or that crazy driver who cut you off and you're just thinking what is going on inside your head? Well, the brain is the most complex organ in the human body encased in its protective skull, thinking its thoughts, feeling those bills and guiding the rest of our body to keep us alive in many ways. Because of its complexity, it has more named features and landmarks than any other part of the body. Some of those you will hear in this episode, however, we will ease into that slowly. I don't want to make you feel like you're back in high school. Being traumatised by the memories of your biology, or chemistry or your physics lessons, I'll go into more brain depth and landmarks in future episodes.
At the time of recording this episode, we have just passed the 8 billion global population mark, which means that there are 8 billion different brains functioning in some capacity on this vast land called Earth. Believe it or not, no two brains are exactly alike, even between identical twins. We really are unique and it starts with our brain.
Well my unique brain decided out of nowhere, back in May 2021 to experience a non - aneurysmal subarachnoid brain haemorrhage. That is a mouthful! It took me a long time to be able to say that clearly in one sentence. A subarachnoid brain haemorrhage, or an SAH for short, occurs when bleeding takes place into the subarachnoid space, the layer surrounding the brain which contains the cerebrospinal fluid. The bleeding is often thought to originate from a small vein or an artery at the base of the brain.
I've had conversations where people have asked if it was an aneurysm, and that seems to be a word associated that people can resonate with or recognise when it comes to a brain haemorrhage. My diagnosis did not have that, however, I'm going to do my best to explain my understanding through research about the differences. So as I just stated, an SAH bleeding occurs into the subarachnoid space. Whereas with a brain aneurysm, it's a bulge in a blood vessel caused by a weakness in the blood vessel wall. Usually at a point where the vessel branches off and both fall under the broad umbrella of a Stroke.
Melissa Gough 6:02 .
The two most common types of strokes are ischemic, and that's when the stroke is caused by a blockage to the artery and a hemorrhagic which is caused by bleeding. Even though an SAH is traditionally included as a type of stroke, it is a distinct clinical entity with acute onset symptoms and requires immediate evaluation in hospital. That is me in that unique 5%. I'll talk about those symptoms as well and they definitely are acute. The cold hard facts from a study published in the National Library of Medicine stated that around 43% risk death at its immediate acute stage, and then there can be a 57% mortality rate post the first six months. So here I am, 18 months down the track, certainly not the same person I was, but damn blessed to still be breathing!
In my instance, there was no prior warning, no signs that it could possibly occur. It literally came on incredibly quickly, aggressively and completely out of nowhere. There was suddenly severe pain at the back of my head, neck pain. In my instance, it felt like the neck seized up, there was aggressive vomiting, it was like I painted the room with my body parts. Apologies, I know that's a bit of a gruesome visual, but that's the best way to describe it. Parts of my body went numb and it felt like it was shutting down and I was starting to lose consciousness during periods of that time. These are prominent symptoms of an SAH and I experienced them all.
Hospital was a mixture of ICU, which consisted of CT scans, MRIs, many tests, and some of them I was not conscious of at the time. From the ICU to the High Vision Unit on the Neurological Ward, and then eventually out onto the General Ward. During this time, there were a lot of tests, conversations, confusion, pain and shock, and for me, this has been another layer of trauma within the actual SAH itself.
Each minute, each hour that you are still alive, with this vital medical support is a step in the right direction. It took nearly a week to get my formal diagnosis. My brain was scanned and also internally examined during my time in hospital. That second one was one of the most surreal experiences that I've ever encountered in my life to be awake while they have been inside your brain taking a look…. I'll save that one for another episode, but it is surreal! The area in my brain that was impacted the most was the occipital lobe. It is the smallest of the four lobes of the cerebral hemisphere, and it's located under the parietal lobe and above the temporal lobe near the back of the brain. It is the part of the human brain responsible for interpreting information from the eyes and turning it into the world as a person sees it as well as memory formation.
As a result, my sight was impacted and I was experiencing photophobia. That terminology means fear of light, and it is a heightened sensitivity to light and brightness. I can tell you it is painful and intense. I would either have to have the lights off, curtains closed or have to wear an eye mask, as the exposure to light was incredibly painful, especially earlier in the recovery. I've come a long way from then, however from time to time, I have to be mindful about anything that requires me to see flashing lights or strobing lights, which can trigger a sudden onset of sharp pains in the back of my eyes or my brain to fatigue.
Even though I stated earlier this is not going to be a conversation all about doom and gloom, the reality is, a stroke is profoundly disruptive for a young person's identity, productivity, relationships and emotional well being. At 48 years of age, I was considered young for being a stroke patient.
It was an amazing yet surreal feeling getting home! I will never forget that scene when I was wheeled out of the hospital by a nurse, with my brother and staff saying well done and waving goodbye. I was excited to get home yet I had anticipation. Even though I was in the right place, for all the wrong reasons, there is something very comforting knowing you can ring the buzzer beside your hospital bed. I was still incredibly fragile, but good enough to be home. I knew that I was seeing my GP within the next two weeks, and I was having another MRI in the next six weeks. Besides that, I had no idea what to expect. Everything was uncertain, I was confused. I really felt like my whole world had been flipped on its head!
In speaking with Professor Julie Bernhardt from The Florey Institute, who featured in one of my previous podcast interviews, stated this is a common theme amongst young stroke patients. Please check it out, it will give you some more insight. I had lost a lot of weight, my appetite was all over the place. I was on some pretty serious medication to prevent any further stroke, severely sleep deprived because I had to take medication every four hours over a 24 hour cycle. When I got home from the hospital, I had photophobia and I was wobbly moving around on my feet. Under the strictest of instructions cannot be exposed to stress! I was not allowed to drive, step up on any form of ladder, cannot have a bath, only allowed to have a shower and work, my employment was signed off for the coming months. it was like keep low and rest, rest, rest.
Telling friends and family and making people aware of what has happened to you, this is a big one. Luckily initially, there were people to share the news with those who needed to know, so that sort of created a buffer of support and took away a bit of that stress. However, when you start speaking with those in your life, you will encounter responses of shock and disbelief, as well as the most heartfelt conversations, and initially, there will be an abundance of support. I also put a post up on social media nearly a month afterwards, explaining it all, so I did not have to continually repeat myself, as at the time my energy levels were fragile, and very limited for activities at the time.
Tears and expressions of love and support, stories and memories, and the prospect of you no longer being in somebody's life. Those words, those conversations, those moments I will treasure. I've also been reminded of some special conversations, especially in those first early months, as during that time, some of it is a real blur, and others I just don't remember due to the condition I was in, but have appreciated it immensely, when the person I was speaking to shared their encounter of it.
As humans, we gather like a herd, a tribe, a community during someone's significant event to help them navigate through the shock and all the emotions that you feel during a time of such adversity. You feel truly loved and supported. For me, this was a massive motivator for my healing and my recovery. Over time, this does taper off and people go back to their lives, however, in mine, a brain injury is still very much part of my everyday life. There are parts of it that won't grow back. These millions of cells and neurons that were damaged, they're gone. However, due to the plasticity of your brain, your neural pathways start to develop in a different way so you can navigate through your everyday life and digest the stimuli around you. I will also talk about that in future episodes.
Melissa Gough 14:11
It's scary and fascinating all at the same time! At the time of experiencing the SAH we were in a global pandemic. I was living in a city that was experiencing some pretty significant mandatory lockdowns. People were heightened and fed up and I was getting asked really overwhelming questions. There was an assumption that it was because of COVID, or because I got the vaccination that I experienced a brain haemorrhage. I'm not going to go down that rabbit hole about COVID or whether people choose to get vaccinated or not vaccinated, I'm just sharing with you what I experienced.
In those moments, I was experiencing a new way to advocate for myself. I was getting a projection of their medical views and opinions, and it was a lot to process, and at times it was really upsetting. I'm trying to understand and deal with the shock and grief of what's happened to me, as well as getting everybody else's views. It was hard at the time.
As humans, we all mean well, and most have the best intentions. As the saying goes, you don't know what you don't know. You know, not everyone's heard of a subarachnoid brain haemorrhage, and I'm probably one of the last people everyone expected to hear that from, I was so happy, so healthy, life was in a great space. Then bang this happened! Some people, they just needed to provide solutions, they just needed to go into that fix it mode and turn up with their toolbox. What I've observed is we don't always have to understand what's going on. Yeah, it might help things, but you can ask questions, you can research, you can talk to somebody to help you understand, it then doesn't become about you. You know, when someone nearly loses their life, it's hard to show up, you don't know what to say.
By default, people run away and don't do or say anything, but just show up and hold space. I had a brain haemorrhage, I can tick that box! However, I have never broken a bone in my body, and I'm touching wood, big time. The common thread of both though, is that both are obviously painful, medical attention is required. Both in their own ways will impact and hinder your life, your movement and your everyday functioning. There is that internal recognition of such factors. However, all forms of recovery, the layers of trauma, the grief, the shock, the pain, how it happened, how someone feels through these moments through those recovery moments. It's not all linear, and it's not the same.
I was getting my brain haemorrhage compared to someone walking into an office and quitting their job, lots of comparisons to symptoms of COVID. There was this need for me to self protect my energy, my emotional well being, and anything that would impact my recovery. I valued and treasured the people who just wanted to turn up and be calm and hold space. I cannot begin to tell you how wonderful that is. Advocating for myself in these new conversations and environments was really uncomfortable at times. Even though you're speaking up for yourself, because you're trying to give your own self value and self worth what it needs. It's not an easy or enjoyable experience. There are often feelings of walking away feeling guilt and shame within that process. Now, there are two conversations that stand out to me when I said please stop comparing what happened to me to other examples, especially as they are not about an SAH. Challenging someone in those moments truly shows how they respond. One person registered, and maybe it will come up again in another conversation at another time, and we'll broach that topic again. However, another got defensive when I was incredibly emotional and trying to talk about a difficult part of my recovery. In the end it became about them.
We all have different tools, abilities, life experience, resilience and environmental conditioning. It is confronting for some people when they are in a situation that they feel they cannot handle or control. However, I'm going to refer to a game changing book that was recommended to me during the time of my recovery, especially within probably the first six to 12 months. It is called The Gift by Slovakian born American psychologist Edith Eger. She is a Holocaust survivor and specialist in the treatment of PTSD. She explained something really different. There is no hierarchy of suffering, there's nothing that makes my pain worse or better than yours. No graph on which we can plot the relative importance of one sorrow versus another. This kind of comparison can lead us to minimise or diminish our own suffering, and for me, this resonated so much. When interviewing the amazing guests on this podcast, this has been a common theme in discussions. The impact of our adversity, our traumatic event is profound, and it truly does test the structure and foundations of the connections with those around us. Value those who want to walk the recovery path with you. There will be different versions of those friendships, the empaths, the practical friends, those who bring an amazing hug, those who will just want to feed you and nourish you. All will play their role in your recovery and life going forward.
Unfortunately not everyone will, people will leave friendships and will taper off. However beautiful humans will prevail. Friendships will deepen, and new friendships will show up. I'm not going to take away the sadness that I felt with such losses of those who I cared about and respected. I'm no longer with my partner who was with me when the SAH occurred. However, in a way, I feel richer for it. There are two beautiful quotes that I'll add here. The unexpected kindness is the most powerful, least costly, and most underrated agent of human change, and trauma heals in the presence of an empathic witness.
Melissa Gough 20:53
Routine, a word that inspires people and also stresses people. However, there are so many personal development books and research into the benefits of a routine. I feel even more so as part of the recovery of a brain injury. As James Clear states in his book Atomic Habits, it is so easy to overestimate the importance of one defining moment and underestimate the value of making small improvements on a daily basis. In my case, day by day, week, by week, month by month.
Rest is vital during this time, and it is a significant agent in the brain healing itself. Initially, it was hard to establish a routine, I felt I was totally bound by what my body was telling me. Even getting up to have a shower was initially a huge effort, energy wise, and I often go straight back to bed afterwards. In the first 12 months in particular, I felt like I'd slept 10 years worth. And luckily, I did not find or resist it, I did not have a choice, my body and brain was sending pretty strong signals. I was going to bed early, waking up early, pottering around in my small apartment, having an afternoon sleep, and then going to bed early again. This felt like it was on repeat for at least the first three months.
As more time went on, then I was able to establish a routine, my body and brain was healing, I was getting stronger, and you start to gain some more perspective and a little bit more confidence. The shock of everything has worn off, and you now start realising that this is my life. This is my new normal. My employment situation had changed, and my physical abilities were a continual work in progress.
However, my energy levels were slowly, slowly, slowly improving. I was at a stage where I feel I'm in a space where my daily routine is setting me up for continued growth, recovery and abundance. Research has shown if you can still perform an activity, then you can still retain your sense of personal power and independence and continue establishing a familiar pattern of events. This can help transfer the schedule of a daily routine into the long term memory portion of the brain. So I sit here with you now, just past the 18 month mark. As I've said, this is just an overview of some routine strategies that have been working for me.
The night before I work out what is happening the next day. Sometimes factors prevail, and it's not doable. However, it is something I really try to keep persisting with. I do a double check on the calendar to see what is on. So one thing that was recommended to me by an Osteopath who specialises in Neurological Disorders is to put a large calendar on the fridge, but don't overwhelm yourself. Just put the major things that you need to put on there to help you navigate through your week, through your day, and I regularly check in with that. So I can organise myself and can regulate some brain breaks each day. Every day will be different, go easy on yourself. It does not need to be rigid, it does not need to be perfect. This is just an overview. Look at it as managing your energy not so much about your time. So if you're doing something that you feel is going to sort of really require a lot of brain stimulation or brain energy, make sure you give yourself some extra breaks that day, or what you might decide to do, is the day after you really keep the calendar free, so you can rest.
I tend to wake up around 630 each day. It can vary depending on if I have been asked to work as a relief teacher, or if my body and my brain requires more rest. I do a daily meditation whilst lying awake in bed for about 15 minutes, then I'm up. I get my body moving and it is vital to expose it to sunlight early in the day. It supports the immune system and gets those necessary hormones active in your brain to boost mood productivity. Then it is breakfast, supplements and yoga a couple of times a week and on the weekend. I was able to incorporate yoga into my life around the eight month mark. However, I was not allowed to have my head below my heart until my body got stronger, and my brain was further into its recovery.
So at the moment, there's walking and yoga in my life. We're looking at doing some strength training next year, some swimming. It's all part of the process, as well as doing things that I've never thought I would do before. I also cannot believe I'm saying this out loud that I've also started learning about playing golf, I've already had a session. Anyone who knows me golf, and Melissa, we're never two words that would be in the same sentence!
But hey, you go through an adversity like this, and it leads you into new and different directions, and believe it or not, golf is really good for the brain. Dinner is no later than 730. I go to bed early, it's usually between 9pm or 10pm, depending on what's going on. I usually start to dim the lights a good hour or so before then when I'm in bed. I do my best to read for about 30 minutes, and move away from that activity that we're all guilty of doing and that scrolling through our mobile phone.
I cannot shout it from the rooftops enough here, especially if you have a brain injury! If you are having a good day, still do your best to not overdo it. I know it is easier said than done! There are parts of you still remembering, functioning and thinking that you're just as capable as you were pre brain injury, especially as you start to get stronger. However, what I have observed at times is you do not know how your brain is going to always react to stimuli, until you're right in that moment. I was given that valuable advice, from a wonderful senior nurse who oversaw my care in the hospital. Try your best to not beat yourself up about it. It's just your brain's way of saying hey, we gave it a go, we're just not ready for this yet. Or, today, it's just not the day.
I'm going to use the wise words of Julie Kuch, the Brain Injury Life Coach who I featured in a previous episode in Season 2. She states to all her clients, there is no such thing as a bad day, it's a recovery day! So as I wrap up, I'm incredibly blessed to be achieving and reaching each milestone. Each of them I have done something to celebrate myself in some way or another. At the 6 month mark, I sat at the beach, ate lunch and enjoyed the water and just absorbed the beautiful surroundings with such gratitude. At 12 months, I took myself off to a really swanky lunch, and enjoyed being in that moment with wonderful food just being present and giving my body a real treat. At 18 months, I went to work and saw that as part of progressing forward. I'm certainly not the old me. However, I feel like I'm taking the best bits of that person with a combination of what I value and what is important to me now, and creating it to evolve as a new and better version of myself. I still go through the ebbs and flows of a brain injury, that's going to be lifelong. The progress and recovery is not linear.
However, I'm at a place of accepting that it is part of me now. There can still be fear and feeling scared, which is incredibly normal. Your body has gone through hell and back. There are layers of grief of sadness as you mourn your old way of life. I also appreciate those who are still in my life. I'm thankful for the lessons that I've learned about myself and those around me. Even though painful at the time, it has awakened me, made me wiser, made me calmer, made me more accepting, and I have an even healthier sense of value for myself.
So as I finish this episode, I'm going to leave you with a quote because I love my quotes. I'm going to finish this one with a quote by Napoleon Hill, ‘every adversity, every failure, every heartache carries with it the seed of equal or greater benefit.’
Thank you again for listening to another episode. Thank you for your continued support. See you in Season 3. Take care.
Thank you for listening to this episode, and I hope you found the show really valuable. If you'd like to learn more about the podcast, our guests and the topics we discuss, please head over to our Instagram page @ thebraingamechanger. Make sure to subscribe and tick those five stars so you never miss an episode. In the meantime, continue embracing those game changing moments. Have a great week and see you again soon. Take care.
