So this swirls around comes and goes, sometimes sparked by and in conversations, other times just by taking part in things and listening, and watching and maybe more than is realized at times and then when sitting in the quiet I think about these things. My views won’t align with everyones and that is ok, actually often my views don’t align with others. Sometimes they are in perfect alignment, and neither is right or wrong.
So when I think about Dementia/Alzheimer’s organizations and groups in context with controlling the narrative, it makes sense in the simplified form that they want to control the narrative for that is how and what they use to meet the organizations goals and agenda. They need to have goals and agenda’s, and the people who are in paid positions should be working whole heartedly to help meet those goals and agenda’s. Those goals and agendas often come on the shirt tails of people living with dementia. Working with people with dementia is great and needed, only those living with the illness have the inside track on the illness and all that it entails.
We, the people living with dementia must just always be careful that we do not allow our narrative to be controlled, advocacy means we are striving to help make changes, but if we have to follow someone else’s narrative instead of our own, then we are no longer actually advocating we are pushing some else’s agenda.
We can be loyal to an organization and still true to advocating in ways that align with who we are, as long as we are not pushed to align only with this organization or that organization or this one’s agenda or that ones agenda. As an advocate, we should be able to work with many organizations while staying true to self, we should be able to work with many groups and organizations so that the voices of those with dementia are heard not controlled.
Working with and in ways with as many as we feel we can manage on a day to day basis, this also holds true for working with research groups, we all have varied interest, and we should all be encouraged and encourage each other to participate in research in ways that help us to feel like we are valued, that we have purpose that we are making a difference.
We also need to be encouraged to look after ourselves first and foremost, advocacy can and often does take over, because we are passionate about wanting to make a difference. Because it does give us purpose, sometimes, we forget about the other aspect of who we are, we are still people, with outside interests, needs and wants.
It sometimes becomes easy to put all those things on the back burner, I wonder if that is partially because we go through such devastation and lose of self when we are diagnosed so when we and if we find ourselves in a place where we feel valued and that we have purpose. Which is something we all need, whether we have dementia or not. This can and often leads to a situation where we feel we need to do more and more, we put this pressure on ourselves and it is then that we forget the other parts and pieces of who and what we are. We are not our illness, but sometimes we become so caught up in advocating about it, that we end up so entrenched, it’s as though it’s all we are, so we become what we advocate we are not.
There are many fine lines to walk, sometimes we cross lines without ever meaning too, this can happen for those without dementia as well. But it is important that when we recognize that we need to pull back, step back, change direction, change focus, then we need to give ourselves permission to do so and hopefully all those groups and organizations will encourage that, and be happy to have us doing whatever we feel is manageable and allowing that to ebb and flow just like our dementia.
We need to be loyal to the point of speaking in a good manner about the groups and organizations we work with, that also doesn’t mean we can’t speak about about things we think are wrong. Both are important. Finding the balance in it all is not always easy.
For me personally I am working with many, I am deeply fond of some, but hopefully have good working relationships with them all. I am not always popular for I do stick to being true to myself, and so if I am not or don’t fall into alignment then I won’t be popular and thats ok, its more important that I remain true to who I am. I truly appreciate the groups and organizations that allow me to be me, Christine, the person first and foremost and then Christine the Advocate, because, being an advocate is just a small part of who and what I am.
I am grateful for the many different ways different groups and organizations have enriched my life, I hope they know that. I hope they know that whatever and whenever I agree to work with them on various things in various ways, that I do so with a good intention, giving the best I have of myself while doing so. I hope that they can and will continue to honour me when I have to pull back, or forgo certain things.
I have to take care of myself, my mental and emotional well being along with my physical well being, my heart and soul. So that I can continue to advocate for a long time.
I also hope that we allow others the grace to do the same. Advocacy is not about being a star, or recognition or being the best or better than anyone else. Advocacy is about all working to the greater good, for the good of many. Knowing and believing we have done our very best to that end should always be enough.
I have been privileged and blessed to have met many great people, made many friendships, since my diagnosis and through all my advocacy work, through all the many groups and organizations that have allowed me to be part of their group. Every time I give a talk, or do a presentation, I meet someone who reaches out, who in hearing their story reminds me of why I continue to do what I do, that is always enough.
I hope that if you advocate you remember to look after yourself, and that it’s ok to do that, I hope if you advocate, you remember why you are doing it. I hope one day things will be so good no one will have to advocate but until then I wish you all love and happiness and hope that whatever you do you do it with a large dose of kindness.
Chrissy's Journey 