Two roads diverged in a wood, and I –
I took the one less traveled by,
And that has made all the difference
Life is a journey with many twists and turns. Some people are dealt a hand of cards that throws up so many obstacles it becomes hard to imagine. For me the word is ‘imagine’ and what I constantly refer to is that mental box that exists for me. I sought and seek so often to explain to others what this is but never convey its reality and impact on my day to day life and the necessity for constancy and routine. The “Box” as I refer to as my consciousness, I have so often written about, not knowing if I was able to convey the meaning. Regrets, maybe it is just pure selfishness or maybe there are reasons, I have only a few of them. I am to busy trying to live the day I am within, with no imagination going forward, and amnesia related to past memories, and all I retain is few memories without the autobiographical function that applies to most people. Eleanor Rose (mum), in her feisty 86 years of fearless life asked me to go to Co. Clare, that she would drive the 140 miles and we could stay in Ballyvaughan; visiting those places we so often visited in my childhood and beyond; meeting with relatives and old friends. I said No; it was that hideous fear that prevented me from this opportunity of a holiday with my mum, sharing the old stories, thinking about those who I deeply loved and who have passed on, over the decades. Maybe this was meant to be because it gave my niece Molly the opportunity of having a holiday with her grandmother and learning a little about her life and that of our family.
Traumatic brain injury significantly changed my life and in particular the relationships I had with family and friends; my marriage did not survive it either. I constantly seek knowledge as to what it is that brain damage does and because of the impact on memory I am forever trying to pass on the information to others especially KT who is ‘Mensa’ and seek reassurance that they understand. Mum as a general practitioner, a real country doctor for over 60 years was the person I most wanted understanding from and that never seemed to be possible. Only once, in deep anger Rose said to me “I know about it; my mother sustained a brain injury as did Uncle James who was a lawyer” (my grandaunt Emily Blake-Forster died from a horse riding accident also and this was enough said.
Am I religious? No. Rose has given me many sets of Rosary beads and little seeds of wisdom about the importance of having a belief system. I constantly said that all my family and friends who had passed on are continually with me. Ironically, now Rose is there. I can’t visualise these people but in September of this year, as I have written about in Chapter 10, my curiosity was to follow a journey that lead me to Professor Adam Zeman, University of Exeter, a doctor who named the condition Aphantasia in 2016. Is this Eleanor Rose saying to me, I now understand and I leading you in a direction to help me understand what I so often try to explain without the ability to really comprehend myself? You will have to be patient with me as I try and connect the reader with this extraordinary path provided. The coincidence moves one stage further with the name Eleanor Maguire and for two reasons; Eleanor as my mum’s name but Maguire is the name of Jim Maguire, my psychiatrist, who became a friend but most importantly a mentor.
The marvels of the internet age is that deficits can be challenged and you can engage in a virtual world that connects you direct to the source, therefore this reply is a real treasure for me. The wonder is that this eminent Professor took the time to reply to me as follows:
Many thanks for your message.
We have much to learn about this still, but I promise to remain curious about it!
September 5th, the day after my visit to St Vincent’s Private Oncology for my second last Herceptin infusion, I received the first response from Professor Adam Zeman, University of Exeter Medical School, Devon, UK, with four links. As an activist mainly through writing emails in relation to the poor provision of mental health services in Ireland, I was very surprised to receive such an informative and inclusive reply from Professor Zeman, Exeter University, with an apology for a delay in replying, due mainly to the volume of mail he receives. He said it would be helpful to the project if I could contribute some more information. I answered the two questionnaires. The first one was a well-established test of imagery vividness known as the VVIQ; the second questionnaire explores your personal experiences of imagery in more detail. Respect and engagement of the patient is essential and so often in the elitist field of medicine is lacking. To consolidate the connection through my email to Professor Zeman and his reply, they asked for confirmation that I wanted them to keep me informed about future updates. Aphantasia was only named in 2016 and it is possible to assess the progress of the work via the Eye’s Mind Study website: http://medicine.exeter.ac.uk/research/neuroscience/theeyesmind/
These findings are gathering considerable momentum and for me personally I am relieved because traumatic brain injury and its effects form such a part of the great unknown and you are constantly side-stepped because brain injury has invisible/silent symptoms and what is so very real a deficit to you as a person with brain injury, is glossed over with the reassurances by the medical profession, academics and people in general, who with professional authority, state that every brain injury is different which leaves you further in the darkness of your reality. I have countered this by knowing one reality of what happened with the brain injury, I was left completely deaf in my right ear so for me this is one tangible that I know, and it reassures me that other deficits apply too. Now Aphantasia, coined by Professor Zeman in 2016, gives substance to what the Mind’s Eye entails. I cannot imagine. As I read all that is available on the internet, I can identify with what is researched. This in turn for some people with brain injury, it is about acceptance and providing other mechanisms of coping. Medical research now more than at any other time can tap patient engagement by the simple use of an email and a reply. The global media coverage, on Professor Zeman’s research, resulted in more than 10,000 people worldwide, coming forward to be involved.
The internet, youtube, TED talks, Nobel Prize Org, Harvard or just googling the word ‘Aphantasia’ and the term which was coined by Professor Zeman in 2016 is described as “the lack of ability to summon imagery to the mind’s eye, as we do when we count sheep or visualise an absent relative.” In doing so, he gave voice to people whose experience differs from that of friends and family. My mum past away Christmas 2017, at a time this Mind’s eye research was nominated for “Oscars” of Higher Education (Times Higher Education Awards 2017). I cannot visualise my Mum or remember meetings every week. However I can say that amnesia and the inability to form memories has one positive advantage, I have little recall of breast cancer and what I know to be in place, as described by Professor Crown as ‘the sledgehammer to catch the fly” approach, for one year now. KT constantly reminds me but I rely on him too and his extraordinary memory to add normality to my day. This concept of people who cannot visualise was first identified by Sir Francis Galton in 1880. It has taken over 120 years for it to receive the attention it merits and this is from the engagement of what first must have been a concept to research to findings by Professor Zeman and his team. To give significant endorsement of what this finding called Aphantasia is, I will quote Blake Ross, the Facebook technology innovator who founded Firefox:- http://www.independent.co.uk › News › Science
Blake Ross wrote how his “mind was blown” when he discovered he had Aphantasia. In his Facebook blog that was shared over 15,000 times, he said it explained what he had always experienced as being “stupid-smart” – intelligent at many tasks but lagging behind when visual memory was involved. He wrote the discovery of aphantasia was “as close to an honest-to-goodness revelation as I will ever life in the flesh.
To me, aphantasia tells me stop trying to explain to others. The gratitude list idea of Ariana Huffington, Huffington Post http://www.theatlantic.com/technology/archive/2018/01/does-counting…/549638/ is another great gift and add to this the routine that KT helped me create. KT recognised that I needed on a daily basis a routine, the constant reminders, the limitations of actions, the importance of going out every day, the essential of keeping my curious mind active and for this there were books, magazines, conversations with different people, watching comedies on the TV (films are beyond my memory capacity, sequence can be difficult and then amnesia means you forget). Conversations are particularly difficult for me, I tend to state words based on facts but the sequence can often be a problem especially if I am tired and KT comes to the rescue and puts the story together. Yes ‘Stupid Smart’ is the paradox. KT has ensured at all times that the computer is the foundation of each day, noting that emails give me information within the day, this in turn enables me to write on topics which the technique of using pre accident memory, most likely my teenage years and childhood, to compose emails which most often relate to social injustice. The discovery of Twitter has in 2010 opened up such a vista … because I can use it to augment my memory. This is done by other people with brain injury also. For us, Twitter becomes are own version of artificial intelligence.
Twists and turns, well here comes another for September 2018 and perhaps it is my mum saying now she understands. Earlier on I highlighted the name Professor Eleanor Maguire http://iris.ucl.ac.uk › IRIS and the associations with both names. Trawling through all the newspapers, there was a glossy magazine enclosed. It was the 2018 UCD publication. What caught my attention was the heading “Exploring the human brain” on page 34. Eleanor Maguire was named as one of “Twenty Europeans who changed our lives” http://alumni.ucd.ie/awards/awardees/2016-awardees/. Eleanor Maguire, a UCD graduate, has been prolific in breakthroughs in the understanding the human brain. If you have an interest in this area of neuroscience, I recommend this 2014 lecture http://www.youtube.com/watch?v=gdzmNwTLakg
Her research proved that patients with amnesia cannot imagine the future. Her other research breakthrough was on London taxi drivers, observing their brains are more highly developed than their fellow citizens.
Immediately I was captivated by amnesia and not being able to imagine the future. But added to this was the concept of spatial. In my prior life, I had no problem with spatial memory. It was this loss that caused me such frustration and upset and then in turn it caused such anxiety and fear leading in the early years to agoraphobia even to the point that I would not go out onto the balcony of the apartment based on fear. I returned to live in areas that I had pre-accident memory consolidation. Holidays became such a traumatic events for me because I just could not get spatial organised in my head. This all consuming fear most likely was the reason I could not go on that last holiday with my mum and I was unable to overcome the fear.
I had to make contact with Professor Maguire to find out if she could even give me some links to help me understand her research. Professor Maguire, Wellcome Trust Principal Research Fellow and Professor of Cognitive Neuroscience at the Wellcome Trust Centre for Neuroimaging at University College London http://www.fil.ion.ucl.ac.uk/ where she is Deputy Director, took the time to reply to me as follows:
Thank you for your email.
I attach a paper we wrote on this topic a few years ago – it has some technical jargon in it it, but hope the gist is still clear.
Professor Eleanor A. Maguire
University College London
Professor Maguire heads the Memory and Space research laboratory at the centre. In addition, she is an honorary member of the Department of Neuropsychology, National Hospital for Neurology and Neurosurgery http://www.uclh.nhs.uk/OurServices/OurHospitals/NHNN, Queen Square, London. Ironically in 1993 it was Jim Maguire, psychiatrist, who when I sustained the brain injury recommended I attended the only neuropsychologist in Ireland at that time – and perhaps this is part of ‘making all the difference’.
I have transcribed this link 2013 http://www.youtube.com/watch?v=gdzmNwTLakg; it helps me to better understand the content and I have to say it is essential for people with brain injury; their medical teams, their advocates, their carers to watch this. The research relating to London taxi drivers is fascinating and especially in the case of the taxi driver findings where he had brain damage.
You may ask why the brain? Why not? Too often I have heard the word ‘secondaries’ or metastatic cancer and although in my case breast cancer was identified and dealt with early, you realise if you talk to other people with cancer that while they often have remissions the cancer tumours still come back and now that we live longer, it becomes more probable. I have known of several people where the secondaries relate to brain cancer and like pancreatic cancer, it is acute and terminal. The brain in the case of stroke, traumatic brain injury, and cancer depending where the tumour is, can throw up all kinds of hidden outcomes and it helps if you understand and this is why this is included.
I include a piece from the Abstract titled Mind-wandering in people with hippocampal damage by Cornelia McCormick, Clive R. Rosenthal, Thomas D. Miller and Eleanor A. Maguire Journal of Neuroscience 12th February 2018 http://doi.org/10.1523/JNEUROSCI.1812-17.2018 which is relevant in my case.
Two prominent features of mind-wandering are mental time travel and visuo-spatial imagery, which are often linked with the hippocampus. People with bilateral hippocampal damage damage cannot vividly recall events from their past, envision their future or imagine fictitious scenes. This raises the question of whether the hippocampus plays a causal role in mind-wandering and if so, in what way?
Having the opportunity to research people (all males) with bilateral hippocampal damage for several days, they examined for the first time what they thought about spontaneously, without direct task demands.
Findings: Controls thought about Past Present and Future, imagining vivid visual scenes, “hippocampal damage resulted in thoughts primarily about the present comprising verbally-mediated semantic knowledge”.
…”However, hippocampal damage changed the form and content of mind wandering from flexible, episodic, and scene-based to abstract semanticized, and verbal.”
The findings expose the hippocampus as a key pillar in the neural architecture of mind-wandering and reveal its impact beyond memory, placing it at the heart of our mental life.
For me, I feel so ecstatic to have in writing the foregoing because I wholly identify with these findings. As a person who is the service user, the patient, the person whose life was significantly changed beyond comprehension as a result of sustaining a fractured skull in a horse riding accident, daily I seek reassurance. The personal trauma for me resulted in much frustration, anxiety and depression, chronic fatigue and now breast cancer but it also had a significant impact for family and friends also. Long ago and far away people who had a brain injury were often referred to as having had a personality change, part of which often included those closest to them, be it spouse, family, friends being embarrassed by the dis-inhibited behaviour especially if part of the dis-inhibited phase resulted in the revelation of all that was deemed secret within the family. As I have said before. My marriage ended in an acrimonious divorce.
Traumatic brain injury, bipolar, anxiety, breast cancer, and dementia. Fear is a component that runs deep within and it delves so deep it into your emotions that it is a prominent factor in how you live your life daily and within that strict routine, stepping of life is just one step from the brink. My mum really understood this fear and how it haunts me because she knew first hand from the early months that passed into years of the outcome of traumatic brain injury which involved constant falling; very poor balance; aphasia dis-inhibited behaviour and speech, often talking about the past which should have remained hidden. This link provides clarity and details of what is the silent aspect of brain injury and especially how I fear the onset of an early dementia related to TBI and now the fear that if the cancer spreads that it would be to the brain http://www.traumaticbraininjury.com/symptoms-of-tbi/severe-tbi-symptoms/. Mum knew that for me having early onset dementia would mean that I would want to walk off this stage called life. My preference would be death rather than dementia; it hard enough to survive with dense amnesia. The ‘Schrodinger at 75’ forum was held in Dublin, Ireland, in September 2018 and I gained some re-assurance. I did not attend but Anthony King, The Irish Times, reported on the Early Diagnosis of Alzheimers Outlined http://www.irishtimes.com/…/spatial-tests-could-reveal-early-sign-of-alzheimer-s-says… at the ‘Schrodinger at 75’ forum and the importance of how initial detection is key to treating disease. Every day I find ways of trying to manage forgetfulness and so far it has worked well for me and has been outlined many times in this book. The routine is rigid. It is basic but then too much ‘fluff’ confuses me and that is not a good place to be and fear then further complicates it.
We are back to the importance of ‘Spatial Awareness’ and how simple tests could allow clinicians to spot early indications of Alzheimer’s disease. Herein is another twist or turn to understanding for me. Professor John Keefe (I highly recommend that people especially those with brain injury, cancer, stroke, their carers watch Professor O’Keefe’s youtube lectures particularly when he received the Nobel Prize for Medicine http://www.nobelprize.org/prizes/medicine/2014/okeefe/facts/). Again I have transcribed the youtube talk and can identify with his findings and research at a deeply personal level. Professor O’Keefe, a neuroscientist at University College London (UCL), told the conference that early detection was critical for treating this disease, since Alzheimers as we now understand is believed to start decades before patients are diagnosed. Professor O’Keefe is renowned for discovering “place cells” in the brain. These cells start firing off signals once we are in a place.
Teamwork between such cells allows us to build a mental picture of, for example, a new city we visit, Professor O’Keefe explains further, “The idea of a place is an abstract concept that is created by the mind itself”. What is important here is that this map is created in a part of the brain called the hippocampus (and we now know and we need to explore further that Alzheimers disease starts in this part of the brain.
To update health-care systems in the face of the increasing burden of multimorbidity will require a shift for physicians from specialists to generalists, likely through changing payment models to incentivise improved patient outcomes… Another shift will be greater patient technology to support self-management of conditions. Integrating care in creative ways, such as treatment centres for multimorbidity clusters (for example, hypertension management within HIV clinics), could provide other scalable options.
Multimorbidity is a challenge that we all face as we live longer. I fall into this category and have engaged where possible with technology to enlighten me. To add yet another twist. Youtube has provided me with great support in particular since I was diagnosed with breast cancer through the connection with music of my era. At this moment in time I am listening to Frailty (Sting and Stevie Wonder) which is so appropriate, empowering and soothing when discussing multimorbidity http://www.youtube.com/watch?v=gnZgNYoZkeU. In earlier years I wrote a lot on depression (diagnosis Bipolar) but this book relates more specifically to the impact of a brain injury and and laterally breast cancer (with much illness in over two decades). You may ask why in this final chapter I am so entrapped with the brain which is because as a consequence of traumatic brain injury I have derived so many anomalies that neuroscience especially since the 1990’s is on elevation towards just how important the brain is. To return to the words twist and turns I read an article of major significance recently by Sylvia Thompson, Life Sciences, Irish Times http://www.irishtimes.com/…/science/how-tuning-in-to-music-can-stimulate-the-brain… about the importance of tuning in to music which can stimulate the brain. I have written previously about fear and its impact on your sense of being human. Add to the power of music which conjures up different emotions, those historic memories before the brain injury, fond memories of childhood and so much more which you encounter when it is dense amnesia is the outcome of a fractured skull.
Another academic who kindly replied to my email.
Thank you Dr Catherine Jordan, neuroscientist, who is Atlantic Fellow at the Global Brain Health Institute in Trinity College Dublin whose research is music and memory.
As an Atlantic Fellow for equity in brain health. Dr Jordan has a specific mandate to seek social and public-health solutions to reduce the scale and impact of dementia….
Researchers have found that playing a musical instrument engages motor, auditor and visual parts of the brain which results in more grey matter – the clusters of neurons in the brain and spinal cord. “Music engages higher order congnitive functions such as organising and monitoring and brain image have show a larger corpus callosum – the bridge between the two brain hemispheres – in musicians.”
Albeit a mere patient (person who suffers from Greek) or to be more commercial, a service user; my experience tells me I must agree with the finding “Researchers have also found that musical memory is one of the last types of memory people with dementia lose. It is also interesting that there is some theoretical evidence that suggests musical memories are stored in a different part of the brain to other forms of memory”.
Traumatic brain injury can leave you with a very simplistic view of life; partly explained by the foregoing but maybe therein are benefits too as encaptured in the quote of the remarkable Stephen Hawking
“I am just a child who has never grown up. I still keep asking these ‘how’ and ‘why’ questions. Occasionally, I find an answer.”
My last day for Herceptin infusion at St Vincent’s Private Hospital, 3rd floor, Oncology. Professor Crown had given me the name of his researcher Karen Culhane because I explained that I had been writing this in book form on my WordPress site and wanted it to be published as a book with part of the proceeds being donated to Cancer Clinical Research Trust http://www.ccrt.ie/. My assumptions were so simple but by the time I wThe Cancer Clinical Research Trust is dedicated to reducing the burden of cancer suffering through the development of improved treatment for cancer patients.orked out the process I had traveled all over St Vincent’s University Hospital. The irony is that it never dawned on me to phone Karen (I had the wrong name too) but luck was on my side and I met a person who worked with Karen and all was solved when we met up at Centrepoint, SVUH. You see, I operate like TT on the “A” roads with all that goes in between having no existence in my grasp of what I do day to day. I can hone in on Facts but details therein are the difficulties. Karen told me about the Caroline Foundation http://thecarolinefoundation.com/about-the-foundation/ where a father and step mother have undertaken to raise e1 million for research for CCRT. The Cancer Clinical Research Trust is dedicated to reducing the burden of cancer suffering through the development of improved treatment for cancer patients. Conscious as I am of all the scandals related to charities in Ireland, I was pleased to hear that Professor Crown, also former Senator, Dail Eireann), runs a “lean” research trust for cancer incorporating UCD and DCU. Karen said Professor Crown will make a contribution too.
Beautiful piece written by Gaynor French in the Irish Examiner concerning Dignity in Death; I cannot add any more words to what is contained herein but I share so Gaynor’s views http://www.irishexaminer.com/breakingnews/ireland/i-have-lived-with-dignity-i-want-to-die-with-dignity-838693.ht
“More may have been learned about the brain and the mind in the 1990s – the so-called decade of the brain – than during the entire previous history of psychology and neuroscience.” ~ Antonio Damasio
Hope is a powerful word and sometimes it can leads to what is awesome. The Nobel Prize in physiology or medicine:- http://www.sciencenews.org/blog/science-ticker/cancer-immunotherapy-wins-2018-medicine-nobel-prize
James P. Allison of MD Anderson Cancer Center in Houston and Tasuku Honjo of Kyoto University in Japan have won the Nobel Prize in physiology or medicine for advances in harnessing the immune system to fight cancer.
All previous types of cancer therapy were directed at the tumor cell, but Allison’s and Honjo’s approach was to remove brakes that keep the immune system in check, unleashing it against tumor cells. These “checkpoint inhibitor” therapies have greatly increased survival of cancer patients and may produce even greater results when combined with traditional therapies.
“The brain is the organ of destiny. It holds within its humming mechanism secrets that will determine the future of the human race.” ~ Wilder Penfield
Age 12 my mother Eleanor Rose gave me the family signet ring in gold which can be used as a stamp (again of another era in time). The title of this book is the motto
Fortuna Audaces Juvat
Fortune Favours the Brave
But therein what is essential is Courage
I am going to publish this and ask a question. Is there anyone who can help me make this an Amazon book. Hard copy was part of my plan but I feel given the content that the links are so important that I aim to remain on the internet.
Would greatly appreciate some assistance here…. Michelle
The Scoping Inquiry Judge Charles Meenan