Today’s blog post has been spurred on by the movie “Still Alice” – is based on a novel of
the same name published in 2007. The novel was written by Lisa Genova, a neuroscientist who was inspired by her grandmother’s development of Alzheimer’s disease to write about the disease from a firsthand perspective. Still Alice is a compelling debut novel about a 50-year-old woman’s sudden descent into early onset Alzheimer’s disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University.
Alice is a celebrated Harvard professor at the height of her career when she notices a forgetfulness creeping into her life. As confusion starts to cloud her thinking and her memory begins to fail her, she receives a devastating diagnosis: early onset Alzheimer’s disease. Fiercely independent, Alice struggles to maintain her lifestyle and live in the moment, even as her sense of self is being stripped away. In turns heartbreaking, inspiring and terrifying, Still Alice captures in remarkable detail what’s it’s like to literally lose your mind.
Please be aware that this daily blog post is an abridgement of my daily written works.
The part of the movie “Still Alice” that got me to writing down my thoughts in yesterday and today daily writes is this:-
” I’m still alive. I know I’m alive. I have people I love dearly. I have things I want to do with my life. I rail against myself for not being able to remember things – but I still have moments in the day of pure happiness and joy. And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be part of things, to stay connected to whom I was once. So, ‘live in the moment’ I tell myself. It’s really all I can do, live in the moment. And not beat myself up too much… and not beat myself up too much for mastering the art of losing.”
These written words have become very dear to me, they mean the everything that my heart is screaming out to those people who are both curious and worried for me and my PPMS kick ass moments.
I want people to know that there are days where my PPMS Diagnosis & its alter ego “My Story” get together and kick my ass from one end of my days path to the very end of its last second of its days time. There are days when I am left feeling pushed beyond my limits, there are certainly days when I question who it is that I am and who it is that I will become, and of course I do grieve for the life that I had, the hours that I spent playing with my kids, the hours I worked hard to bring home a pay check that would buy my family new adventures and new foods to try, I will forever have the memory of jumping into my car – turning up the stereo and zipping down the road to a place that comforted my soul… but in the end I am not unhappy for all the things that my PPMS has altered, varied or taken away… I know that I can still do these things, I just now have to be aware of how go about things & how I use up my daily energy allotment.
Like Alice “I Am Still Alive” – I have a great family and some beautiful friends that except me and my attitude’s against all odds… I know who it is that I am & I know what I am able to do, I know that I have a varied skill set and I know that my PPMS diagnosis doesn’t define who it is that I am. I know that I have had to and will continue to have to alter my daily schedules and the how’s and the when’s that I will be able to do things… but I know that I also have a lot to live for and a lot to look forward to… Alice may have contemplated suicide – ending her life by taking a bottle of pills ““You are not living the life you want to live,” Alice writes in the note, which provides her with instructions on how to take a fatal dose of the pills she has hidden in a drawer. “You have chosen an outcome that is the most dignified, fair, and respectful to you and your family,” the note assures her” but have no want for my life and its journey to end…
I love my life and who it is that I am in it… even if that means that I must live the years that I have left with my shadows PPMS & “My Story” busily working in the forefront working hard to trip me up with its designated companion “Funky Walk” working along side in their team. I love with all that I am those people in my life that I treasure… my Family and Friends are my everything and my inner circle is the strength that keeps me pushing forward for the everything that we deserve in our lives.
I to have many things that I want to do with my life… for now my want is to write and write and write… I want to journal and blog about my life.. detailing my stories, my sorrows and my most intimate thoughts and feelings…. there is apart of me that wants to return to my studies of in the counselling field “finish my bachelors” but I am now torn between writing a Colum, Journalism, Writing For The Media, or Becoming A Full Time Blogger. Writing is where I find myself being the happiest me that I know how to be… I feel free and at peace with my life and my story when I am busily writing.
Right now my PPMS isn’t affecting my memory… I know oh to well that this may in my future become the case.. writing now will be my memory that I will gift to myself when and if my memory begins to fail me and my ability to write… just like Alice my phone, my notebooks, my scrawlings, my daily writes, my blog and my every written word are what keeps me going – they mean a great deal to me… writing is my muse, writing is who I am in all my rawness & and in all my truths.
The very moments in the day of pure happiness and joy are very much wrapped up in what I have written above… My Family, My Friends, My Writing… I am certainly not depressed or looking to place a tag of anger on what is my life… I am contented and I am finding the good days in my PPMS diagnosis that is now having to learn to live with and beside me.
The ending quote of what drives me to write about the movie “Still Alice” – And please do not think that I am suffering. I am not suffering. I am struggling. Struggling to be part of things, to stay connected to whom I was once. So, ‘live in the moment’ I tell myself. It’s really all I can do, live in the moment. And not beat myself up too much… and not beat myself up too much for mastering the art of losing.”
I am indeed not suffering… I am chronicling & recording my life in a factual and detailed way. Maybe this way is hard-headed and even confronting… but living my life as authentically as I can is important to me… I am driven by my moral standings to stay true to who it is that I am. Like I wrote above “I am not bullshitting to myself and I am certainly not bullshitting any other person who find a sense of curiosity in what has been happening to me and in my PPMS dilly dalling world… I stand for what I know is the truth in me and within my life’s story. I am struggling. Struggling to be part of things, and I do struggle to stay connected to people who have different ideas of who it is that I should be, or for that matter how I should be living in the wake of my PPMS… I work Hard to maintain my relationships that I love and hold dear with others… but someday’s I find that I have to give myself permission to say “Not Today & Maybe Not Tomorrow” – people have and will have to learn to see that someday’s I just need to get lost and be alone with myself and my thoughts.
As for not beating up on myself and or not taking the burdens of the words of others to heart.. well this part of my “need to do for me list” will take just a little longer to accomplish and or learn to do… don’t hold your breathe though… I am not one for being selfish and I do take to heart all that people say… I am after all an empath – (An empath is someone with the strong ability for this – to feel the thoughts, emotions, and energy of others and generally, people who are empaths are affected by these influences sometimes to the point of it becoming debilitating). I will never be that person that beats myself up for mastering the art of losing… I am not loosing… loosing “what am I loosing” I am gaining the person that I am, the person that has always lived in me… and if that isn’t enough of a self appointed conviction ” I have gained the Author in me that see my dark days and raise them into the light and share with them the beauty in my happy moments, the happiness in & for those who encircle me & I am most defiantly not loosing out on living… PPMS – “My Story” & I may not be friends or even close acquaintances but we are written into each others unpaved paths… we will have to learn to guide ourselves and our varying ways; through, around and over the terrains in our way.
Primary Progressive Multiple Sclerosis doesn’t define me, its try’s to trip me up from time to time… but it has given me the kick ass attitude that will not allow me to disappear behind the diagnosis that now part of my life.
Author. Tanya Kelly