I woke up today feeling as though lately I have been watching the world, watching my life from some other plane, disconnected from it somehow, yet connected. Yes that even sounds way out there to me, but it is exactly how it feels.
I know some wonder why I am not seemingly as active in some forms of advocacy, or at least the perception some have is that, when in fact I am still actively advocating just in different ways, sometimes from the back room instead of being front and centre. However, I have scaled back a tremendous amount, firstly because I spent the better part of 2021, barely being able to get out of bed, secondly, and the piece that is prevalent now is my inability to deal with time in real fashion, for example yesterday at 10 am I got my first reminder of a meeting at 11 am, I was getting ready for the meeting, the next thing it was almost 3 pm, no sense of how it got to be that and the realization that I again have a complete inability to understand or make sense of the how or why’s I have such lapses of time.
This is challenging me in ways I cannot even put into words, on some levels it is why I am only doing a certain amount and in large part working on projects that I can do, complete and be done. Keeping my calendar less full, instead of more, giving myself the grace to let this new piece of my dementia decide where its taking me. I don’t like to feel like I am letting others down, or not doing my part, and this element of my dementia is making me feel that way, and all I can do is hope that when I miss something, when I am not where I should be that people understand it is not intentional that it is something that somehow no matter how many alerts and reminders, I cannot control the process of my brain. So I hope forgiveness and understanding of an illness that can have one looking so wonderful on the outside, and cause one to judge and think one is doing things like missing meetings, appointments, are done purposely and without care. That most certainly is not my intention and most certainly not the intention of others I know who struggle as well.
I wish I could frame it all in an understandable way, but I can’t and as it feels with all things Dementia, I am just learning to adapt to this new change as well, adapting is key to life with Dementia. I am not unhappy in the changes actually I am finding myself in a very peaceful, happy place, content. I am so very grateful to those that have been able to stay in my life, despite, what for some must seem so totally surreal or unreal. I will continue to advocate in ways that I feel I can and as I can, but I also must give time and space for life, my life, whatever that life may look like today. I think it to is important for all advocates to remember, advocating is important it is something I hope many more will pick up the charge to do, but there is also the other side of dementia, there is life, life that is not dementia, there is family, friends, walking, biking, travelling, everyday life, we can abandon life in pursuit of our advocacy. Humour is also one of the most important things I hope we all remember to bring into our days.
We can do great harm, however unintentional it is when we forget to take part in our everyday life as well as our world of advocacy. Truthfully we can expect everyone to be as interested in our advocacy work or our Dementia, thats the reality, no everyone wants to hear about it, not everyone wants to be part of it, if everyone did then we wouldn’t have to advocate anymore.
I admittedly think that for many of us, yes I have been guilty of this getting so wrapped up in our advocacy and the world of it, which brings us so much richness, so many great friendships, such vast knowledge and understanding, the hope and new found purpose, that we can unintentionally leave out those standing closest to us. We forget to take part in life with them, and leave the work of advocacy behind for a while.
Most leave the work they do after 6 or 8 hours each day for but many in the advocacy arena it continues 24/7. Sharing the laughter and joys of normalcy to whatever degree we are able with those we care about is not only important for our overall well being, but for theirs as well, and we must remember that if we want them to stand by us through our journey, and we want them to join us where we are in that journey then we must join them in their journey of life as well.
These are my rambling and jumbled thoughts this morning, I hope we all do better, understanding and forgiving each other not matter what our plight in life is, life is hard, not just for those with Dementia but for all. Praying we all grant each other more grace, forgive our shortcomings ( of which I many), and remember to offer kindness everywhere we can.