I have received several messages with people wondering if I am OK, I want to say thank-you to all of you, your kindness has definitely, made this last stretch easier. I have not been reading for two reasons, one I am away from home and will be for the next undetermined amount of time. . , I am away for personal reasons, family reasons, but the particulars are not for me to tell or discuss, it is not my story to tell, so I won’t. Just know that I am ok, that due to being remote, wifi service is not reliable, but I will return to meetings, groups etc. as I can for the coming weeks.
This sudden and unexpected events, has brought to my attention just how very important the connections and friendships, and support from all those various groups and organizations are to my well being. Being without them the last few weeks have been challenging, but I am figuring ways to get busy while away from my home.
There is a lot happening in the advocacy/ activists dementia world, I do wonder how much is actually being heard given the state of the world these days. No matter how much will actually change during these challenging times the work must continue, the momentum for change must stay strong, we need to get more people engaged in working with the researchers, more people advocating, pushing for change. We must not and cannot let this slip and no matter how often we think we aren’t seeing change happen quick enough, each small little piece eventually adds up to big change. The biggest hurdle I see is that we need more people to step up, open up and be willing to help propel things forward. As we all know, this disease will progress at different rates for us all, so we need to be doing a continuous drive to encourage and mentor others, so that as many of us experience changes and may need to slow down or change how much we do there is plenty of others ready to step up. Advocating is not or in my opinion should not be about wanting to be the best known etc. it is about seeing change and making things better for all those who come after us. So it needs to be a selfless act of work. Doing it for recognition, or accolades, is the wrong reasons, if you receive those in and while doing your very best to make a difference that that is an honour not to be taken lightly or for granted or letting it go to your head.
i am while way working very hard not to let stress, override my well being, ensuring i am getting my walks and rest, having my little Phoebe with me is super important, for my well being and we are staying in an RV, so we have our own little space to retreat too. So really trying not to let my own wellness be impacted. My doctor is checking in on me, I was in the hospital just before this and he will be doing more with me on my return.
So I may not be writing as often at the moment getting to meetings and things are dependant on things that are changing day to day here, but I miss you all, please be well. Thank you for all your emails and messages.