Dreamed to Life

I remember so clearly how I sat and literally searched for hours for content that related to my breast cancer. All I wanted was to hear from other local women about their experience with breast cancer. I was really frustrated and dismayed that there was nothing available on social media. I kept wondering where the local content was… I kept asking myself why no one was making this available to others…

Until I decided that I would stop asking and start doing…

I dreamed this project into life in 2012 while sitting in a chair and getting chemo… wondering if and when… pondering my own mortality and sanity…

Until I picked up the camera and was able to record stories from other brave women who have been where I have been! Standing there listening and looking at other women and seeing myself in each and everyone’s stories was utterly heartbreaking and humbling. I am forever grateful for their time, honesty, courage and strength!

Thank you for sharing my vision and allowing me a glimpse of your life!

SAY Channel Introduction
 

PS: This is an ongoing project, if you are willing to share your story please contact me at: sumayyajohaar@gmail.com
PPS: Please LIKE and SHARE and SUBSCRIBE

Shukran! Thank you!

Today Was Rocky

Feeling a bit off today…
Got a call early this morning from a young lady I met only last year when she was diagnosed with Stage 2 Breast Cancer. She informed me that she got sick two weeks ago and that they have rediagnosed her with Stage 4 Metastatic Breast Cancer, her cancer has spread to her lungs…

Whew!
I was dumbfounded… I mean I never run out of things to say really…
But this morning… I had no words…
My lengthy list of curses and colourful expletives were silenced…

I am still trying to process her grief and anguish. I am utterly broken…

Stage 4 metastatic cancer is tricky and your life expectancy is shortened drastically depending on how your body reacts to treatment. I tried my best to stay positive and told her about many other Stage 4 Thrivers on Social Media and elsewhere. But my heart still feels the traitor…

I turn the mirror inwardly because I know what the nature of this disease is… that you are never really cured… it is part of your body and can return without warning and explanation at any given time…

I always get asked how I cope with this reality…
I don’t…
I don’t think about it…
I fill my head with other things… like music, books, children, family, running, praying, reading, working and creating…
So there’s really no time for the nagging insecurities lurking in my subconscious.

But on a rocky day, like today, I think about it a lot more than necessary…

Bad Bad Days

Ofcourse I still have those days… I am only human… Those horrible days when I just feel depleted. I don’t see the point of doing anything really…

I hang out in the quiet solitude of my bedroom and try to breath through the terribly morose thoughts that accompany this awful dread in the pit of my stomach… Sometimes I am not sure if I used to have these really down in the dumps days BC…

During this time every emotion is amplified and the moods are unstable. Every random ache and pain sends me into ‘has my cancer come back?’ mode. And I am literally an unresponsive unavailable sack of misery lying on my bed trying to scour the internet for some reprieve to my incoherent thoughts…

I think about everything… How Motherhood makes me feel like a failure… my kids usually save their best indespicable behaviour for these precise moments of sheer mental ineptitude. And I tend to detach myself from them cos the only thing my mind can process to say is STFU… 

I think about all the irresponsible and shameful things I have done and cringe at my brilliant idiocy. Nothing like some good old Introspection to kick you further into major depression…

I battle to find calm. It’s a bit like severe PMS with a hint of bipolar… the kind that could be lethal to all involved…

I have tried to suck it up in the past and pretend that my mind is not a warzone… but then it makes the battle so much harder and bloodier and violent… So I have learnt to accept these days…

I say ‘No’to everything. No sweets. No dessert. No lekkergoed. No running. No talking. No moving. No laughing.

No No No! 

Why? Because I am having a Bad Cancer Day and because Shit happens…

But I wont give up because this is just a minor setback on a major finding inner peace project where roadblocks and explosive reconstruction is welcomed!

So allow yourself to have your really bad days and tear yourself to pieces… but remember that tomorrow will be a better day because you probably wont remember what you felt like yesterday!

There are many things to be grateful for on this journey… but my saving grace is short term memory loss!

Surviving You

I started counting days. Counting the days since I have last spoken to you…

I am on day 56… FIFTY SIX DAYS – don’t know how I got this far without you telling me to ‘believe in yourself’ or laughing at me ‘jy’s bos befok’! I miss you telling me to be less critical of myself and to just ‘maak liefde’…

Last night there was a screening of ‘Through the Eyes’. All those memories just came flooding in. I heard the opening sequence and for just a moment I thought to myself ‘You can do this’… Then your voice was projected through the speakers. Oh my…

That film was the one that cemented so many things between us. We fought, we laughed, we cried, we respected and believed in each other. Our lifelong friendship, camaraderie and mentorship became visible. Always cheering each other on loudly and boisterously. We were never shy of sharing – everything…

Always sharing… ideas, hopes and dreams – flaws, faults and regrets. We criticised and openly laughed at each other endlessly.

Aaah… the memories enshroud me and my mind has become lost and confused in a treacherous ocean clouded with misty dreams. Some days I am able to find a boulder to cling to, to provide some relief and sanity. Other days the storm rips me away and I literally drown at sea…

But that’s okay because I have made peace with the fact that you were and are still part of my soul. I have not stopped thinking about you. How can I?

I am slowly learning to live without you… even though I want the world to come to a screeching stop!

My head still sometimes screams, yells, begs: Nooooooooooo!!!

I try to forgive people who say stupid shit to me because they don’t know what else to say. Because it hurts too much to say the truth… that this is so fucking terrible… and they look at me vacantly whilst wondering quietly ‘I don’t know how she will survive this…’

I still fall completely and utterly apart and question everything and then wait for answers that never come. I go for long meditative walks and annihilating long runs where the rhythmic pounding forces me to remember that I am still part of this world…

And sometimes I scream of frustration, for leaving me behind…

I apologize for my rage…

I Forgive Myself.

For being alive. For not saving you.

I keep forgiving myself, over and over and over again.

I want to wish this all away as if it were nothing but a bad dream. I want to build something strong and beautiful instead of being this person struggling to stay afloat and barely breathing whilst crossing an endless ocean. I want to rather swim the tides and find my lifeboat so that I can get to the other side and whisper that ‘I miss you’ into the cool breeze… and then scream ‘I love you’ as the rain beats down on me.

Perspective

Life does not accomodate you…

It shatters you…

It is meant to shatter you

Every seed destroys its container or else there would be no fruit; 

Every caterpillar shatters its cocoon or else there would be no butterflies…

– Unknown

There are many ways of looking at your problems and facing adversity. But when we attach value and reason to our perspective it becomes much easier to address and overcome our difficulties. 

Go To Sleep

The only reason I knew which day of the week it was is because I had an overjoyed super excited six year old who could not wait to go to school because she had been off sick with a tummy bug that made me want to hide in a cupboard and not ever come out… Two weeks ago she had mumps and stayed home for a week much to her delight (at first) and then to her dismay (because she missed her friends and teacher).

And as the tummy bug got sorted the eldest suddenly started moaning about sore ears which I dismissed as sheer laziness because she never wants to go to school or even get up for that matter. She got dragged along to the doctor anyways and was given the all clear only to wake me up at 2am in agony with a face much similar to that of a chipmunk! Noooooooooooooo!!!! Mumps… AGAIN?

Do you have any idea what it’s like to deal with a mouthy attitude fuelled 9 year old with Mumps? Let’s just say it is NOT FUN! I just look on in sheer amazement (WTF horror mostly) and wonder what the Hell happened to my sweet docile child of 4,5,6,7 or even 8 years old?

Mumps…. How can you do this to me? I inoculated religiously and still you showed up in both kids…

Which leads me to my next question: Are my kids weakened immune systems my fault?

Apart from the fact that I was awake caring for sick children all night… this guilt trip nearly caused me a meltdown of cringe-worthy proportions. So I tried to address the matter with my husband, who was fast asleep and absolutely NOT INTERESTED! ‘

“Mayya… Really?” he grumbled, rolled over and tried to wrestle as much of the blankets away from me as he could, and as politely (as he could) told me to go to sleep…

But here’s my logic…

When I was diagnosed, my cancer would have been in my body for at least 5-10 years (according to the doctors – which I am uncertain of. What annoys me is how certain they were that I would be dead in 6 months without any treatment blah blah blah…). My kids at this stage were aged 5 and 2. The realisation kicks in! Wait for it…… Get it? I had cancer in my boobs when I had them in my womb!!!

Could this have affected them? Could it have affected their immune systems because mine was not working? Even more alarming was the fact that my beauties were non-milk producing decorations that served only to fill a bra cup! Other than that… ZERO… And I mean ZERO as in NIL lactation advantages. I did not breast feed because there was nothing to feed other than my anxiety of course. The lactation clinic tried to kill me with Jungle Juice and many other concoctions which did not work at all, much to the annoyance of the nursing sisters who were convinced I was the Anti-Christ of Breastfeeding!

So this is what keeps me awake at night… Guilt!

Yoh! My mind is the devil I tell you!

Swiftly Moving Along

I have not written in 4 months! Why are you not writing I get asked so often? And I mostly respond that I am busy writing every day. It’s my job. The question that you should be asking is why I have not written on my blog for so long…

Writing is an intimate part of my daily routine and it is part of who I am and what I do. The last four months has been absolutely overwhelming and has forced me to refocus and re-evaluate everything I do. Nothing like the fragility of life to shake you up and make you realise your purpose on this temporal plane…

I have come across many people who have been patiently waiting for my next rendition of insanity. Much of my silence however, has been due to criticism of a negative nature, and it has led me to question my intentions and doubt my integrity.

I have always understood that I am a Creative Soul. It took me years to embrace this and even longer to make peace with the fact that I love being creative and expressing myself. I see no other way of being and living other than dreaming, creating and making. It is a very sensual and honest way of living that cultivates an immense sense of inner peace and self-acceptance. My creativity comes in the form of words and pictures, and like most artists I am petrified of showing my creations to others because I find criticism unbearable.

I often wonder how other artists deal with criticism…I am always open to professional criticism that could help improve my skills. Unfortunately I do not deal well with personal unconstructive or hurtful disapproval. I basically get extremely angry… And just like that my inner calm dissipates and leaves me thirsty for blood. All my calm hippie feelings drain out of my system and is replaced by sheer Voldemort vibes…

It takes me a few minutes to regain my composure and then wonder to myself… Really… But what have you done? Can you even construct a sentence? I have not realised that so many people actually read my blog and then tell my family members how much they dislike it… or how offended they feel by it…

Now don’t get me wrong, I am grown up enough to understand that realistically if I choose to share and show my work, people are allowed to have opinions about it. Sadly, I have made peace with the fact that we are not living in an ideal world where everyone is kind and acceptable of everyone else!

But I will keep on writing despite the ambivalence, dismissive or hateful remarks. Why?

BECAUSE I WRITE FOR ME!

And some wise words from one of my favourite author Elizabeth Gilbert: “Just smile sweetly and suggest – as politely as you possibly can – that they go make their own fucking art. Then stubbornly continue making yours.”

As I do!