@LetterToMyYoungerSelf……………IT’S OKAY TO SHAKE
This title – IT’S OKAY TO SHAKE - may seem a strange thing to say to one in their younger years of life but for me this message would have been a life saver. As an older person I hope this story is not only cathartic for myself to write but useful for any person (younger or older) living with a neurological condition. My story is a story of epilepsy and its stigma shadow.
How could I share a dialogue with my younger self in a captivating way that would at the same time endeavour to be a myth buster around something that has hindered my younger years - stigma. To this end, the word STIGMA in this story is presented in the form of an acronym and provides a frame for what I wish to share with my younger self – it’s okay to shake.
By using the acronym framework, I am encouraging my younger self (and any person with a neurological condition) that it’s okay to shake! Had I heard or followed this advice I would have begun life with no stigma to hide and saved myself from many unsettling life moments that were to follow.
Before I start, I will define the word stigma - ‘a mark of disgrace associated with a particular circumstance, quality or person’. The fact anything associated with a stigma is a disgrace is reason itself to bust this myth. Let’s begin this stigma myth busting story for the benefit of my younger self.
S – secret – Hey younger self secrets are not always good and can sow the seeds for stigmas
Being born in the 60’s and writing this story in my 60’s is a gift that only reflection can offer. Being the youngest of four children I was also the ultimate surprise. Being first generation Australian with British lineage I was fortunate to come from a loving household but one that was extremely British and even more so extremely religious. Stiff upper lip and don’t stray from the rules - you don’t want to go to hell now do you!
In these words, I share there is no blame to my parents for a life of extremes, but life was full of expectations and anything that didn’t fit these was squashed, stopped or most importantly kept a secret. The casing point is when you have a child like me that had moments - that I now know to be seizures - it was best to keep them secret.
So, pay heed to this oh younger self because a secret (like having seizures) when kept as a secret plant the seeds of a stigma. In my case the secret was not only kept from the world but also kept from me. If you find this scenario difficult to understand the best way for me to explain this scenario is via a sneeze.
A sneeze is natural so when you sneeze it simply happens. For me because my seizures were natural – to me – because they were kept secret when I had a seizure, I simply thought I was having a ‘shaking turn’. I knew no difference so by default went along with the secret.
My message to my younger self is a strong one. Having secrets by default help to create a stigma and if you let that be part of your life then over time it prevents you from living or being your truth. I use the term living or being your truth as if I had been more open about my seizures or ‘shaking turns’ it would have set the scene to be better at speaking my truth which is an important key to unlock your future self.
T- trauma – the story and hold of trauma – it ends with you
I would most definitely not have told my younger self her future traumas.
Being in a tragic car accident and becoming a widow at the age of 23 is a big trauma to navigate and I don’t wish it upon anyone at any age. What I would have told my younger self though was to embrace and feel her trauma – embrace the neurogenetic tremors and shakes of fear, anger, exhilaration or joy but don’t close off to your feelings.
With a particular focus on my younger physically and emotionally damaged 23 year old self I would recognise her trauma and rather than celebrate her attempts to almost overnight get on with life I would invite her to recognise the disruption to her life. I would also nip the secret and its shadow - stigma - in the bud and encourage her to source support and feel the feelings that were bubbling to the surface. Its good to feel – it’s good to shake.
Escalated by the car accident my seizures increased and instead of sharing I even lied to the medical support. This action only shackled me tighter and further into a stigma trap. Over a 30-years period I chose to keep the secret alive telling very few about my seizures and by default this action was a form of stopping myself from any form of feeling. Oh, how I would tell my younger self how this was the wrong decisions and how much better it would have been to find her voice by simply starting with the phrase ‘I have epilepsy’.
Not only encouraging her to take this stand and be proud to shake but most importantly to encourage her that accepting her truth was the most important first step in healing any trauma.
Now on the other side of the thirty years and having lived on earth into my 6th decade so much more is known about trauma. Even the impact of inter-generational trauma which I am convinced was the silent partner to the reason why my parents chose to keep secrets - especially for those situations that stimulated a stigma shadow. The trauma of early years and generations can be passed on for 7 generations or more and for my parents being children and a by-product of World War 2 there was plenty of trauma bubbling below the surface.
Being cognisant of traumas whether they be generational, ‘big T’ or small t’ traumas is something I would share with my younger self as then she could take the necessary steps to shake off the shackles of trauma – it ends with her – or us!
I – individual – Me myself and I
‘Me myself and I’ is an adage that I would highlight further for my younger self and help her recognise the importance of self-love and self-care in this brave new world of it being okay to shake. One way could be to recognise that every time she had a seizure it was nature’s way of slowing her down - a gift from nature rather than a stigma.
It was the stigma of seizures that prevented me from being honest with others which also meant lying to myself -the wrong kind of self-love or care. Yes, it’s finally good to be in a space where my self-love and self-care is at the forefront of all my decisions - but hey younger self, did it really need to take 60 years and the rite of passage in my life before I could step aside from this stigma around shaking.
An important point to be made to my younger self is how my reluctance to being honest regarding my interventions (such as medicines not working) was so wrong and selfish. As a result, this meant it took so much longer for the right support to be found – how much unnecessary stress did my body, and my significant others had to endure because of this action. This was selfish action and very avoidable.
If I had a plea to my younger self, it would be to not keep the secret of having seizures alive. Instead, break this inter-generational trauma and stigma and begin to celebrate the body’s ability to communicate in unique ways. Hey younger self why not consider your seizures and shaking as a superpower - after all it makes you very adaptable to uncertainty in an era where uncertainty is the only known.
In a Jungian kind of way, the individual is the new collective. By this I mean to truly make a difference in this world to achieve whatever your purpose may be and for the better of the collective what you do matters. The sooner my younger self hears and learns this the better her world and future will be.
In some way having this dialogue with my younger self may have better prepared her to be stigma proof and just as a baby comes into the world with nothing but self-love, she would be more ready to love and accept herself and shake.
M- Menopause – The Mmmmmmmmm word
Menopause is a tricky conversation to have with your younger self as it often represents the twilight, later part or final chapter of life – or does it! Now that is the message I would give my younger self which is to look at menopause as a rite of passage to the best part of your life. Yes, being younger is great but when menopause knocks on your door (men have it too) consider it as an honour and opportunity to be bold.
My personal menopause journey took me a while to consolidate this wisdom and in fact became the period of my life where I began to speak my truth and embrace my seizures - in some way, give myself permission to shake.
It is a time when our bodies shift into a different hormonal status and as individual as our fingerprints are, so will be experiences of menopause. But to look forward rather than fear its pending arrival I posit (not just my younger self) to anyone who is either in or having/had an opportunity to experience menopause fortunate. This thought is primarily based on the fact the opposite of not living to and beyond menopause is not a preferred option. What is that saying - only the good die young – well I don’t wish my younger self to die.
Another part of this menopause twist being more of a bonus, that I would like my younger self to know, is the boldness that comes with menopause and how it can be put to such good use. In fact, you don’t have to be in menopause to be bold, but it is the combination of boldness and lived experience where the gold nugget lies (often referred to as wisdom).
So, what does menopause, boldness and wisdom have to do with shaking and stigmas you may be asking – I know my younger self would be. Research has found that menopause physically changes your brain – referred to as menopause transition. I am therefore keen to let my younger self know that in change old behaviours can also change and this brings windows of opportunity. Any opportunity to change is an opportunity. The biology of menopause changes the brain’s structure, energy consumption and connectivity and eventually compensates for the new direction.
If nothing else menopause brings a licence to change and for me, it was finally a licence to shake. My wish for my younger self is to know they don’t need to wait until this time of life to be okay to shake.
A -Attachment and long may it stay
New directions are another way to explain attachments and I would want my younger self to pay attention to their attachment’s past, present and future. Although I have not put any age range to my references of my younger self discussions, in this final letter of the stigma myth busting acronym it suggests the earlier the better – at the beginning of life.
Without going into the heavy detail of attachment theory there is so much to be said around the importance of bonding and how this begins while in the womb with the birth experience being fundamental. So, in this case I would tell my younger self that at the very beginning is where attachment is so important.
Sharing some of my early life experiences with my younger self is possibly a moot point but an opportunity to at least raise awareness - how the knowledge and importance of attachment has become.
What really happens when babies are left to ‘cry it out’ is a great conversation starter and one, I would like to have with my younger self. Being a babe of the 1960’s this method of sleep training was a given (in most families in the western world). Yes, a grand generalisation but the 21st century represents an evolving shift of children from only being seen and not heard to more than 6 out of 10 parenting advice books still endorsing some form of ‘cry-it-out’ approach.
Well, that was way back then and now the importance of attachment and its long-lasting results to prepare an individual for adulthood and beyond is widely recognised. Having said this the attachment experience is a precious one for my younger self to embrace, having the confidence to shake with no stigma is surely a sign of positive attachment in action.
The end of the story – but it’s not the end
In sum, especially for my younger self, and at any stage of my life (especially at my beginning) I would encourage these 5-stigma myth busting steps to be taken:
· be more wary of secrets
· lean into traumas but always be led by self-care
· recognise the importance of individual actions and collective connections
· consider menopause as an opportunity to celebrate than fear the change
· treasure and celebrate important attachments throughout all of life.
If these steps had been part of my younger life maybe there would have been no stigma around my epilepsy journey. This leads me to wonder maybe my younger self through this STIGMA acronym would be the one to bust the stigma myth and tell me…… IT’S OKAY TO SHAKE.
Dr Jayne Meyer Tucker aka @DrJMT
30 August 2024