You Could Never Have Imagined…(A Letter to Self)
I see you. I understand the inner turmoil that you are experiencing now that your life has been completely upturned by Guillain Barre Syndrome.
It no longer gels with the vision of the person we had for ourselves. The person whom we think we should have been, wanted to be, by now.
This is my letter to self explaining why the person I am now is so much better.
I hope you can find some solace in my words and take what is appropriate to apply to your own life.
Do you remember when you bestowed this moniker upon yourself at the age of 5?
It was the middle name that your parents never gave you; meant to help you feel like you fit in at school amongst a sea of other children who were blessed with that all-important middle name.
What you couldn’t comprehend, Starbrite, was that you were always destined to stand out.
There are defining moments in our lives. Oftentimes they are the moments we have visualised, dreamed about, planned for, such as the birth of a child, landing that dream job, finding your soulmate. For you, dear Starbrite, the defining moments have been the ones you never saw coming.
5-year-old Starbrite dreamed of being a ballerina when she grew up. By the time the teenage years rolled around, studious Starbrite entertained visions of exotic travel and high-powered careers: Lawyer. Cardiologist. Neurologist.
Well, babe, you got the Neurologist, just not exactly the way you imagined it.
You didn’t become a Neurologist; you were treated by one.
At 24 you were on the fast track up the corporate ladder: Ambitious, driven, tenacious, competitive; fuelled by an ironclad determination to succeed in all that you took on. Personal attributes that nearly cost you everything, and yet, ironically, are the very tools you had to call on, draw strength from, to save your life.
You could never have imagined that within 3 days of initial onset you would be lying in a hospital bed, completely paralysed, your body systematically shutting down as the chronic autoimmune condition that is Guillain-Barre Syndrome took up residence.
You could never have imagined that you would need to relearn and relive baby’s first milestones all over again, only this time as a young adult. Crawl, walk, talk, feed yourself, dress yourself …the list goes on.
Knowing exactly what you had lost and how much it would take to get it back only made it harder.
You could never have imagined that wheelchairs, walking sticks, pain medications and physical therapy would become part of your new reality. That you would be legally recognised as a person with a disability, and yet, because you don’t fit the societal-constructed disability mould or ‘look,’ be subjected to constant scrutiny and comments of “but you don’t look sick!”
You could never have imagined that you would be pushed to the brink of physical pain limits day after day, year after year, with seemingly no end in sight.
You could never have imagined you would still sparkle and shine despite the adversity and oftentimes shitty cards you have been dealt.
You, Starbrite, haven’t been beaten; you won’t be broken. The hard knocks keep coming, and even though you are right in thinking that your crap-quota must have surely been used up by now, you take all that life throws at you, all the lemons, and just keep on making lemonade.
Fear not, Tiny Dancer, for the life lens may be different but you are still YOU. You didn’t lose your sense of self, your core, that inner spunk. You have just crutched and wheeled a different path. You live a life that is all the more enriched because it didn’t play out according to your playbook.
Even though you can’t remember what it feels like to live inside a body that works ‘properly,’ without physical pain or fatigue, I’ve never seen you so vibrant, so alive, as you are right now. There is a peace that radiates from deep within that wasn’t present in your early years. Whilst it’s true that you would quite happily ‘return to sender’ the physical ailments that continue to be your nemesis, the life lessons, connections, love and deep sense of self that you have discovered along your journey – those you wouldn’t trade.
Life is messy but it’s a beautiful mess and it’s all yours.
There is no one else you should be, Starbrite, than the person you are, right here, right now.
You’ve got this; we’ve got this.
Bree ‘Starbrite’ Hogan