Tuesday, June 5, 2012

The World Slowly Empties #RememberMeNot

I have been having such tough time with words these days. It seems, in some ways my mom's loss of language resonates in me and makes me fall into a silent place where only my own thoughts circle round and round. And memories of her, of our family. Sounds a bit dramatic maybe, but the thing is: this is not an easy time to express what lies within, or worse, in front of us. Yes, my mom's "world slowly empties" and I have seen it happening. Unable to stop it since I found out about it about this terminal disease - with its research so under-funded. My own world slowed down and sped up simultaneously - determined by her loss of being.

And then a small miracle happens: Dementia SA and M&C Saatchi Abel teams up, and do something spectacular: visually, beautifully, and strikingly true - and real, very real: an application using FaceBook titled #RememberMeNot > www.remembermenot.com You can also watch the app via YouTube below if you are hesitant (no need really) to give it access via FaceBook:

I became vaguely aware in the periphery of my mind about this app with some scattered tweets mentioning their good work:
But it was only this evening, via Kayli Vee Levitan @KayliVee in a direct message that I really sat up and paid attention. Too much has been happening I guess. My mom takes in fluids with a needle. But I am glad I paid attention, because this app does what I have failed to do so far - or so it feels. (And I am determined to spread the awareness about it, and its message). It asks what I have hesitated to ask: just try and understand this illness for the sake of those you love: Alzheimers & Dementia steals life and it leaves emptiness. On 31 October 2009, I wrote the Afrikaans poem "sy is gesteel" about the loss I felt, created by this empty space of her. Do not leave as well. Do not "unfriend" in real life - how much worse can it get for her? (Find my mom's page in FaceBook: "Vriende van Joey Steenkamp")

The irony is that it is often not the sufferer of Dementia that forgets. It is the onlooker, the trusted long-time friend, or beloved family member, by their choice. My mom has been loved all her life, but the past few years she has been forgotten by so many that could not bear to come close to her forgetfulness and confusion, and her suffering - from early on already, and especially now that she enters the final phase of her life. She did not forget to love, but has been left standing on her own - emptied of people - not because she cannot remember their names, but because it is easier for some not to remember her right now (I think).  

Quite a few say, "I really don't want to see her like this" and then I cannot help but wonder: what about her not seeing you? (And I truly understand, because I do not want to see her like this either. I, her confidante and only daughter, have other memories I wish to hold sacred and superior in my own memory banks). Or another would be concerned, "she would not recognize me any way". Hang on, don't you realize that she will feel less isolated and more loved when you are close? Hold her hand. Say a prayer. Watch some TV together. Not being recognized is a small price to pay for what she gains in return: being recognized. Being less alone. Less emptied. Please, I do not blame any one, I am just so sad and so disappointed. I cannot bear to think of the cruel emotional treatment she suffered due to ignorance of this illness, like talking about her when she stands right there next to me. And I see her hurt. But now I think, instead, of the kindness I have seen with others that love her. Or even those who care for me, without even knowing her. It helps me carry on.

Thank you so much for this application. I like Dementia SA. I have wondered if my mom would have liked FaceBook (like some of her friends, her age - like Gwen Olivier, her school pal). I have come to the conclusion that it is better she was never in social networks herself... so many faces and too many clever quotes, and many many beautiful pictures, but too few tea time talks and even less human touch. This is what we know and remember of her - her ability to love in real time. To give in spite of herself To live a life filled with people. Not things. And not empty.

My mom is a dignified woman, and maybe (if she could) she would say: Please #RememberMeNot as the illness or my mind broken like it is now. It does not define me. #RememberMeNot for the words I used, or did not have - or the choices I made when I did not know a better way. When no-one knew. Remember me for the way I cared about you. For my heart.

Lief vir Moeks.

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