People often ask why I bother to advocate if we are not paid, but what is payment? If we do everything in Life only if there is a $ amount attached then, we’ll then in my humble opinion we get the kind of messed up world we are seeing at the moment. Sometimes we have to look beyond the obvious, look beyond the $$$, and yes we often receive a gift card of thanks, sometimes some type of remuneration, but not paid in $$$ as most who work do, every hour contributed you receive a set amount of money or contract work. I am always deeply grateful for any gift cards or forms of Thankyou s I get, it truly makes a difference for those living on disability. But I am more grateful for the immeasurable payments I have received that no amount of $ could ever be attached to. That comes in the form of opportunities that if not for my Illness I would never have, opportunities to work on projects that change policies, create changes within groups, influence how things are viewed and seen. It comes in the form of meeting people, incredible people who otherwise our paths would never cross, people from across the country and around the globe, often forming deep and lasting friendships. It comes in the form of being invited to attend and participate in conferences where you get to learn and have input on things that are being done that otherwise you likely would not ever know. I am just winding down a busy fall from Participating in the CCNA’s Science day, which offered me to opportunity to doing a session with the head of the CCNA’s and Canada’s Health Minster, from that to attending the Agewell Conference in Regina, where I gave a 15 minute talk and had many opportunities to meet many researchers, see their work and talk to them about their work. From there on to Toronto where I have attended the CCNA’s first in person meetings of their cross-cutting EPLED team, of which I am so proud to be part of, incredible days spend with researchers, building connections with those we have only ever met with via zoom.
When I think about all that was packed into those events, when I think about the richness brought to my life through those, when I think about the impacts and take always of those get togethers it’s overwhelming. I can’t emphasize enough about the value added to my quality of life through it all, the relationships, that carry on and the first moment of deciding to get involved after diagnosis to want to help make a difference for others. It was getting involved that brought relationships that have lasted and build year after year, these are important relationships, it is a community of people who truly care not only about the work they are doing but caring about each other in deep and personal levels, beyond the work or contributing things you bring. It is deeply gratifying, meaningful. It is something that I cannot emphasize enough for others people diagnosed, so important to find that place where you contribute to whatever level you can, for caregivers, these are not support groups, this is working to make a difference. So many people don’t understand or have a completely ( I was one of those at one time), misconception about what research is, who researchers are, research scares many but if you get involved you will see and look at things through a whole new lens. Research matters. I have had the opportunity to work with some very incredible researchers, and they want to work with you, people with the lived experience, care partners, you are the link to them being able to do the work we the people with lived experience need them to do. They are not scary, they are as real as you and I, they are kind, caring, giving, warm people. I am so honoured to know them, I am grateful for the incredible work they are doing on things that do and will add value and quality to the lives of so many. I believe fully that working with other living with dementia and care partners, as well as everyone doing the research at universities and hospitals around the world, it has not only improved my quality of life in real time, it has I believe been the reason I have been able to help slow my progression, it has contributed to my well being that absolutely no $$$$ ever could. If you would like to get involved please reach out, no matter where you live, we will help get you connected to the researchers. There is many types of ways to be involved to whatever degree you feel is a good fit for you. I know I am forever grateful to Dementia Alliance International for introducing me to the world of advocacy.
Monday will be seeing me fly home I have had a tremendous time, it will take time to fully process it all. I am beyond grateful.