“Is My Condition Part Of What Makes Me… Me ?”
When I write about my story of Primary Progressive Multiple Sclerosis I write in a personal way… I write about PPMS as if he was a real person , with a real identity…(I have humanised him and even given him a name and a gender, his name is “My Story – and his gender is Male”
There are times throughout my writings where “My Story” himself makes an appearance & he is allowed to have a voice and even writes in the first person, I choose not to write for him (as a person telling another person’s story – in a disconnected third person kind of way)… “My Story” does have his own identity and he in fact as of late has started to identify himself as a comedian… (a self amused writer… as I personally see him).
I do think that in giving a human form to the identity of my PPMS, by giving him a name & a gender, by allowing him to speak in his own voice, in allowing him to identify himself as a comedian I think that I am just putting a lighter side to a diagnosis that exists in my body… that works against me in my everyday life… pushing its boundaries and “kick ass attitude” into my even white knuckled painful daily journey.
I have written before in and throughout my writings about my PPMS about how I feel that I am in my day to day life of having Ms test I know that I am in a fight with myself and my diagnosis to maintain who it is that I am…. and who it was that I was before my diagnosis of PPMS came to be a small part of who it is that I am now. I have written about how it is important for me to maintain my mind, my thoughts and my ability to learn new things.
And I have written on numerous occasions of my fears of how I would struggle to lose the who and the what parts of the very person that I am… what would I do without my thoughts and my mind processing and working abilities?? I would hate to think… my god I think that I would be better off being lost to this world than I would be if I had to live in this world with a diminished reality of whom it is that I am.
And there are times when I share a personal side of my PPMS story and how it affects me … just recently in a post I wrote the following:- “My Story”… I even thank him kindly when he makes me crash head first into the walls of my hallway… I don’t particularly find it funny when he trips me up on my many times folded socks (I have small feet and my socks have a mind of their own, together “My Story” and my socks work hard at pissing me off), but I give them a mouthful.. throwing my sox into the washing basket screaming “you deserve far worse treatment but maybe a spin in the washing machine will teach you who is boss..”
It sounds ridiculous… but getting mad only feeds the pain and symptoms… of “My Story” and my PPMS… I have found that humour humiliates both my symptoms and my ass-kicking socks and momentarily I feel a release of it’s at times overwhelming pain threshold that it can at times have over me.
I do tell people who ask about my Ms… that I Have Primary Progressive Multiple Sclerosis, It Can & Will Kick Me In The Ass When It So Has The Need & Or Want To… But Humour Keeps It’s Hold On Me From Knocking Me To The Floor.
I do choose to get up everyday knowing that at this moment in time that there is no cure for Ms, that there is only trials, treatments and day to day struggles…I have on many occasions been told that I am way to positive about my PPMS diagnosis “Like Really – Was That A Sentence, A Statement Or A Judgement ?”
I have told many people over the years since my diagnosis that there is truly no point in seeing the bad side of my Ms diagnosis, that crying & screaming “why me ?” isn’t for me… I tell people that at times Ms may have a tight grip on my pain threshold, but I believe that humour and giving it an identity like I have keeps the strong hold and the amount of medications that I have to take down to the minimum.
So I say to you my readers …. that maybe I am way to positive or even casual about my PPMS and its diagnosis/symptoms and maybe that positive attitude is too positive of an attitude for some people to handle… but for me, having a positive, humanising, humorous attitude about my PPMS is how i cope and get by from day to day – being positive works for me and whilst my positive attitude may not dwell well with others… I say to that…. What others think and how they feel about my positive attitude is just that “their thoughts” I choose not to weigh into the thinking’s and thoughts of other people… my journey and the way I go about it is what makes my Ms story personal to me…I choose to laugh in the face of my own diversity… ” I refuse to use MS as a crutch or an excuse for the bad days that may block my day-to-day paths, I put on a brave face each & everyday… wearing strength & inner perseverance like a super hero cape even when the days have me feeling like I have no energy to power on.”
Awhile back I wrote the below poem titled “This Is Me”… A summation of the everything that I am… & I feel its a perfect summation of today’s scrawling’s and my inner thoughts.
“This Is Me”
I’m not a stranger to the verbal words spoken behind my turned back
I see the finger-pointing
& I feel the stabbing pains that dig me deep within my heart
Pushing me to my breaking pointing
Expecting me to run
Run as far as it takes where no one can see me
All because they say its fun
To pull away at my inner workings
To see how I tick and toc
They want to see me hurt
They want to feel my need
All so that they can say that they were the ones who saved me!
I walk alone in my own stained glass tears
Pushing forward with all that wills me
Through the barricades of people who hold me back
& onto the footpath that I have built for me
And when the darted words make my life unbearable
I choose to walk tall vowing that my tears will never fall.
Silent moments and a flood of tears
Away from watching eyes and cheers of laughter
Silence becomes my comforter
As my legs raise me to where I am ok again.
I am not scared to have to have an opinion
& I am not scared to make it known
& whilst I certainly do not walk without fear
I am comforted by my guiding morals and values
I make no apologies,
I welcome my strength and know that this is who is me.
And when their words
Try to bend and break my resolve
I put on my brave face
& walk proudly on.
I am me
I am unique
I am the best me that I can be.
& certainly no damn sorry’s
For I am being who it is that I was meant to be.
So… “Is My Condition Part Of What Makes Me… Me ?” …. Hell yah it is… & his name is “ My Story, He Is Male, He Identifies As A Comedian” and together “ My Story & I ” live with a positive attitude that has a humanising element of who & what “My Story” & PPMS” is to me…
PPMS, “My Story” & I are the elements of me that make me; me!
So there it is my thoughts and perspectives on an interesting question came into my inbox.. (“Is My Condition Part Of What Makes Me… Me ?”)… the very thoughts that got me thinking about my Primary Progressive Multiple Sclerosis, and about how PPMS, “My Story” & I are the elements of me that make me; me!
Thank you for sticking with me & my long winded writings and thoughts. I hope that through my words you gained a greater understanding of what Multiple Sclerosis is and how the many of thousands of people who have it get through their every day’s.
Multiple Sclerosis may have altered some of my body’s workings & it may have altered the way that I do thing in my day to day life… but I am strong and I live each day to the fullest with a hope that the generations that will follow in my footsteps will live a life without Multiple Sclerosis or any other autoimmune disease in their timeline.