when numbers become infinite…
hospital 21 ! current date – i’ve been back within those white halls, fluorescent lighting, blue curtained rooms, white gowns, steel beds, since the 28/10/21 & just yesterday marked exactly one year since my last hospital admission when my life changed immensely. i am writing because right now all i can do is listen to music and write to distract my trapped, firing, aching, muscles, inside every fibre and nerve in my body. i am writing before i jump out the window that is screwed in tight. right now i am suffering, this pain is unmeasurable and to say it’s hard is an understatement. i can’t move my legs from my hips down, i can’t move my feet or my toes, i can’t lift my back up, & i can’t move my arms to the side or up above my shoulders. i am really in an extreme amount of pain and this hurts badly but i am still managing to keep my smile just like all the times before. i have a lot to say & i will share it in time but for now please keep me in your thoughts so i can find the courage to keep doing, as i do and that is – fight. i still have my faith & hope and a lot of love in my heart & i will prove to you all, no matter the obstacle or adversity you face, you can remove all the limits and no matter what, you are always in control of your body & of your life. i will see this hospital admission through, i will walk out of here, i will prevail, and i’ll be chilling by the ocean and by the coast in no time. i will feel the sand between my toes, the fresh sea water on my legs, cool salty water wrapped around my body, and i will be amongst the calm, the roar and stillness of the ocean. breathing in the salty sea breeze and feeling the sun touch my skin and glisten, warmth from God, like a hug that brings you back home.

i can say this year has been hard work, with ups and downs, some days were easier and some terrible. we have all lived with harsh limits and restrictions but try to turn it up a notch, and then a little more. i’ve lived a new world of restrictions, a life trapped in the limited frame of your body. i’ve lost a lot of freedoms, not able to do most of the things i so enjoyed. i will still never say never and in time i will feel freedom, independence and bliss. when we were all locked in try to imagine a life locked in unable to break through it. breaking through the cracks, putting it all back together and then it cracks again, again and again, you fix it and build it up and it falls again. what would that do to you mentally? physically? emotionally? would you be tired? would you trust yourself? would you have faith? would you crumble? would you fight? i don’t like to over share or say something just to say it. i don’t think i have the right to preach or guide but all i choose to do is help and with that if it helps one then i will keep telling you my story. a story of sixteen plus years that to me – the body and the author, it still makes absolutely no sense, how can it be a reality? not even to myself i don’t even believe this ride of life. please know i won’t post this or write this because i need your sympathy or sorrow so please never be sorry, because I got this and because everyone of you is also fighting a battle of some kind. we have all lost something, lost someone, have suffered and been tested beyond measure. we all hurt, have been lost, and whether we chose to share our battles or face them alone they do exist. some of us unfortunately don’t make it through, some need a helping hand, and others will find their strength and will survive, you can find your hope again. i’ve been working really hard and i know it will all pay off soon enough but now i will just have to keep trying to push through this suffering not because i’m thinking why but because that’s just me, fighting just to live, to continue. God maybe just wants me to pause, maybe i just got too much to learn still, maybe i am getting too far ahead of myself, maybe i’m paying for my wrongs, maybe it means nothing, or maybe it means everything. i’ve had some really special people help me get on with it, help me heal, making days easier because they were there standing by my side. being cared for and supported can be the best thing and i hope all of you will feel this type of selfless, caring, and kindness like i have in my life. just remember when you require help you also have to be willing to accept help, ask for it, and cherish it. what is really strange is i lost so much independence i didn’t know how i could face myself and be alone. i feel anxious and unbalanced, scared and curious, like i lost too much and didn’t know how to get it all back. i know when you have suffered loss like this all you can imagine and focus on is the things you can do, no matter how short the list, there is always something, you can always find purpose, passion, love and freedom, you always will find it i promise. something that won’t stop me is the fact when it’s night and you’re laying in your bed alone, those are the moments when you will face your fears, your mistakes, your demons and you will go through the motions. you can’t help but wonder and question your life especially when you nearly die so many times… i don’t show or share all the details and i’ve definitely experienced my share of so much good and so much bad and that is life regardless of your story, you have a powerful story just the same.

within this year i’ve suffered two AVM strokes, one this june which i battled silently with 24/7 care at home & another one just last week in october, where i am now still currently in hospital learning to move, function, & walk all over again. my progress and all my hard work never truly seems to last & my body just won’t be able to stop this from happening again but i’m still not giving up. i will always be appreciative of every positive moment, and everyday i wake up is a good day. i will continue to work for every blessing moment & gift and i will take this on because my hard work & perseverance is why i am still here today holding onto life. i don’t know what this will mean for me but this AVM can try but it still sure won’t stop me from trying to move, walk, be happy, & achieve my dreams & goals. i have been working way too hard & soon enough it will all fall into place & i can’t wait to share some really positive & exciting news that i’ve worked so hard on this whole year. my reward for better times, a future, of independence, of purpose, are all coming together and i can’t wait to share this with you all soon.

i may not have chosen this life but i’ve taken it on and i’ll keep fighting because it’s what i want to do and because i know i can get through it and because there is just no other way. at this point i don’t even know what my mind is thinking or how I feel in my heart, i am a bit numb, i feel nothing it’s just meh… like again? again x21 right of course it has to be the same, my body just can’t sustain a life of movement i don’t know i guess this will forever keep happening and i don’t know maybe it will get easier or maybe it won’t. i walk through these halls and i’ve stayed in every room, in every bed and some bed numbers more than once, so is it depressing probably. i have memories of trauma, of immense pain, i see tears flowing down my cheeks, i see victories when i see the flight of stairs and hallways. i see comfort when i’m by the lifts looking out the window seeing my past and where it all began. i remember every moment in this hospital, in these rooms and these halls and it replays in my mind. love is in every space here that is because most of you left that love here and it’s lasting in my heart that I know for sure.

when you read this list below you will see my challenges but please remember I am more than just my challenges. i am just a girl that will always find the sunshine, and who will always find the positive, on her own path discovering her own pieces of happiness.

16+ years chronic pain
21 hospital admissions
20 times learning how to walk again
10 times paralysed
4 times quadriplegic
5 separate life threatening AVM haemorrhages
5 AVM strokes
1 in 25 million
functioning quadriplegic
inoperable AVM located base of brain, inside and around spinal cord from C1-C4 with numerous inoperable aneurysms inside, plus permanent spinal cord damage from radiation therapy C1-C5 and hardening of the spinal cord completely.
incomplete spinal cord injury
but i am still… ALIVE and well xoxox