Its been a rather peaceful and quiet week, somehow I thought it was set up to be busy with projects and meetings, some I made it too others forgotten or I was on the wrong day, or wrong time, but I busied myself organizing cupboards and drawers, lost in my own little world and it was a happy place to be. I even managed a couple of visits with a couple friends I haven’t seen for quite a spell, of course it was at their thinking to make it happen as I loose all track of time days weeks months. . I had a chat via messenger with another friend last night who also lives with dementia and she wondered how I was, re changes etc with my dementia. I said at one time I would work really really hard to try to navigate with as little of the challenges being visible to others, it was exhausting, I said I no longer do, if I mess up my words, my thoughts, make mistakes, forget or whatever, I just don’t worry about it, it is what it is. Its too exhausting to try to fit into a world that everyone thinks is normal. My days are spent doing things that bring me joy, that make me happy, yes something as simple as organizing some cupboards can bring joy. Pictures below.
The world of advocacy seems to be shifting and changing, the projects I am involved in are important, there is many great ways to try and make an impact. Sometimes even in advocacy the seemingly smallest and simplest work is and can be the most impactful, and leave you feeling like you are making a difference in ways that really matter. I have been blessed to have had the opportunities to make a difference both globally and nationally, and more recently much more at the more local level. Even though I had to change things due to my extreme health conditions last year, this year I am happy doing what I am doing and not over taxing my system.
I guess we are always learning and growing despite health challenges, despite dementia, we still have the capacity to learn, and I am definitely learning. And I may not be doing the things I once did, or in the ways I once did, but no matter if its advocating, or organizing if I can feel at peace then I am doing exactly what I should be in that moment. As long as I am not putting myself in harms way , and actually even if I am, I can live at risk, isn’t life a risk for each of us each and everyday anyways. We have no guarantees in life, whether we have dementia or not. I am grateful that my dementia got me off of the hamster wheel most of the world lives on thinking they have to be busy all the time, don’t stop long enough to hear yourself think, don’t spend anytime alone. I understand myself in ways I never would or could have if I was still running the marathon on the hamster wheel.
There was a time I kept myself so busy, go,go, go, and even when I convinced myself I wasn’t that “I was taking a vacation,” it was busy, no time to hear my own thoughts. Dementia changed that and after the first difficult few years trying to figure out what and how and who I was know, a difficult and challenging time, devastating in many ways. I don’t believe it was until actually the last couple of years that I started to see, recognize and acknowledge many things that the hamster wheel had allowed to always be pushed to the background. Unknowingly doing damage to my health. Traumas, losses, heartache, sadness, unresolved grief, Always thinking I was happy, but now understanding there is a vast difference to thinking we are happy and actually being happy.
Its that deep seated happiness and peacefulness I am talking about, when you don’t need to keep yourself so busy that you can’t hear what your body and soul are telling you. I love the peacefulness, the quiet of my mind, body and soul. I love that I took all those deep buried things out and examined them , accepted they are part of who I am, looked at the good, bad and ugly, and could then see the things that can and do still bring so much joy to my days, from the crows, which I love to talk to and listen too, to watching the seeds sprout offering hope for another season. I have my dementia to thank for that, for kicking me off the hamster wheel, to bring me to this place.
I know it is only the policy makers, the people who decide how and what care can and should look like that can disrupt that, so my advocacy must continue, because I cant stand by and allow anyone or thing to disrupt this peaceful place within me.