Maybe life is a joke…

I’m particularly aware life probably is one big joke, as I had thought my blog had been set to private, then on the weekend through Twitter and Facebook, I discovered they are still publicly available.

Hello. Here I am again, posting a rambling blog.

So much for feeling the need to be more private!

It really has been a shit of a year (that is the only word I can think of to express it, that is not too offensive), and I have desperately needed to be more reclusive.

Anyway, what the hell, I decided, maybe it is ok to still have voice, here and elsewhere.

However, I do wish to stress, the opinions I express on my personal blog, do not necessarily reflect the opinions of all or any of the members of Dementia Alliance International.

But seriously, I had thought I had set my blogs to be private.

After shutting down my whole website, then spending many weeks trying to work out how to do some ‘reconstruction’ on the website and blogs, it seems even when I listed the blog page as private, my blogs are still available.

Hmmm…

So much for knowing what the hell I am doing. It seems, my invisible disabilities are becoming more evident, and, I really do need to laugh more, and just accept that life really is a joke.

And futher to the ‘life being joke comment’, not long ago I spent some time with some ‘family’ members, and learned that a brother in law took umbrage with the cruel defamation article about me (not him), published in a local newspaper a few years ago. Wowsers, he was even upset the reporter didn’t contact him for comment!

If he bothered to seek the truth (the reporter chose to publish lies, and it most certainly was not me who chose to publish a defamatory article about myself), perhaps he’d have chosen to either talk to me, or even ask those so called ‘close family and friends’ (RG, CC and PP-B) a few questions, for example 1) why they lied about me, and 2) why they lied about my (and therefore his) family.

So, it seems, life really is one big joke.

Sadly, I have more than learned that the hard way the last few months, through personal experiences that have nothing to do with having dementia, or being publicly defamed.

I am longing for that private island, somewhere in the South Pacific.

19 thoughts on “Maybe life is a joke…

  1. Pingback: In the Blogs – August 2019 – When The Fog Lifts

  2. Come stay with us anytime Kate & we’ll take you to some really wild & beautiful “nature refuge” islands.
    (Feeling a bit like you ATM but the struggle continues…”la lutte continue”) ❤

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  3. Hi Kate, Sufrani here from Alzheimer Dementia Namibia. Want to dedicate the below to you, written by my dad (Founder of ADN) and I. You are a huge inspiration!

    ****
    In nearly one decade, we are involved with Dementia. Trying to understand Dementia and the world of people living with Dementia: We have studied many courses online, read many books, googled many websites about Dementia BUT it is the very first time that we’re reading a book that was written by someone living with Dementia.

    Kate Swaffer was diagnosed with Semantic Dementia (SD) at the age of 49. The next few sentences at the beginning of her book (What the hell happened to my brain?), slowly but surely, is helping us with a paradigm shift.

    We begin to understand the slogan of DAI (Dementia Alliance International) of which Kate is a founding member of. An organisation who only accepts people living with Dementia as members:

    “NOTHING ABOUT US, WITHOUT US..”

    She writes:

    “This book was born out of a lack of representation of people with Dementia. I have read many books, blogs etc…..some of them deeply moving tributes to loved ones with Dementia, informative, offering support for care partners etc, BUT about people of Dementia BY people without Dementia.”

    She continues:

    “Sadly, I mostly find them, as well as many of the care partners’ presentations I have seen online, highly distressing as so often the person with Dementia is being written or spoken about in terms of how much of a burden they are to their family, and how we have “faded away” or are ‘not all there’, which exacerbates the vast number of myths and stigma that go against the flow of living beyond Dementia, and increases my guilt for having Dementia.”

    September month is World Alzheimer Month and 21 September World Alzheimer Day BUT us as ADN, we refer to as Dementia Day and Dementia month, as Alzheimers is only 1 of the almost 100 terminal brain illnesses, which falls under the umbrella term “Dementia”, describing signs and symptoms of these brain illnesses.

    The theme this year: “Let’s talk Dementia: END THE STIGMA!”

    As CEO and Deputy CEO of ADN, we hope that everyone who really cares for people living with Dementia in Namibia, will individually take part to END THE STIGMA.

    You might ask us “… but how”….?

    1) Try your utmost to read Kate Swaffer’s book, in order that we really can understand and support people living with Dementia.

    2) Sit down with someone who was diagnosed with Dementia and ask him/her to share with you what it is like to live with Dementia.

    3) Those of you who have someone who was diagnosed with Dementia, STOP hiding the person and avoiding the subject, as if it is a huge shame or curse that was inflicted on you as family.

    4) Stop saying “I want to remember my loved one as he/she was before Dementia” and if he/she is not living with you, start visiting them again.

    5) If you are employed in the corporate world whose clients are human beings, demand that your company needs to be informed about Dementia in order to keep on respecting people living with Dementia as their clients.

    6) If you are working in the Health sector, be an advocate for people living with Dementia and be a whistleblower where ever you see them being maltreated or discriminated against.

    7) If you are working in the Education sector, demand that students be informed about Dementia as a disease and the brain as a very importnant organ which needs to be protected.

    8) If you are a student/learner, ask your lecturers/teachers to be informed and to inform.

    9) If you are in the Judiciary sector, make sure that laws are in place and applied to protect the Human Rights of people living with Dementia.

    10) If you are employed in the Media sector, make sure that the voices of people living with Dementia are being heard.

    Much love, Berrie, Sufrani and the entire ADN team.

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  4. As you well know, choosing to put your head above the parapet only draws increased fire. You can rest assured that there are plenty of us out here to leap to your defence. You know you have the love and respect of your global family xx

    Liked by 2 people

  5. Hi Kate so pleased to read a blog from you but sorry to hear life has sent you some extra challenges recently. Hang in there my friend your voice is being heard and heeded by those who most need it much love Ness 😘

    Liked by 1 person

  6. Two points; life is a joke; you make great plans, then wham along comes dementia and knocks them all away.
    Secondly; the media, and some people, just love to knock others…

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  7. Gregory had a saying, “if you want to lead a quiet life, go unnoticed.“ But you, Kate, have chosen to be an advocate for so many who do not have a voice. And you have done such an amazing job where others have just failed . You have made this life better for so many of those diagnosed with dementia as well as for those of us who love them. I wish I could make everything OK for you but the most I can do is send my love and admiration. Your friend Michael

    Liked by 1 person

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