This is a blog I wrote back in February 2020, which is relevant today, and which I have published on my Facebook page, Chrissy’s Journey. Thank you Kate Swaffer for reminding me of it!
The not so glorified side of Advocating
Often when we talk about our advocating we hear “ must be nice to go to so many places”.
There is a misconception about advocating, at least for all the advocates I know. So let me de-glorify it for you.
It takes months and months of prep work, usually your looking one to two years down the road, never actually knowing if your health is going to hold up that long, long days and nights preparing submissions, writing speeches, writing and making statements. It is more than full time work, the exception is we do not get paid, there is no staff being paid to help us, if we are lucky we have someone who believes in the work we do enough to volunteer and help with proof reading editing etc.
But often we don’t…. and did I mention we have dementia, and while doing all this we must still try to manage in our day to day affairs which in and of itself is often so overwhelming much is not done….you see we have dementia so that means our brain energy only lasts so long, it doesn’t recharge as well or quickly as others, so we have to decide where we spend that cognitive juice, those of us that advocate, out of a want and need to help bring positive change, to help others, for most of us, we do it selflessly with little regard to the enormous price on our own well being, because ultimately if we don’t, how can change happen in the best interest of those living with Dementia….it has to come from those living with Dementia, from those who are willing to open up be vulnerable, expose some of the most difficult and personal parts of themselves.
Those advocates make sacrifices, they spent many more hours fundraising, because very little is funded, ( that’s a whole other column about what’s wrong with that). All the hours preparing, the challenges faced when travelling, fighting the constant fatigue that plaques people living with dementia. Then there’s navigating in strange places, meeting dead lines, getting ready for the next, if you’re lucky, you will have enough energy left to have some dinner, then go to your room to work on the next days needs, in a three or four day span, if you’re lucky you will squeeze in one dinner with others at whatever venue you are attending, and maybe just maybe if all goes smoothly you might get three or four hours to jump on a big. Red bus and take in whatever you can in that time frame.
It is not a holiday, it is exhausting work, it is as in the pictures shown here, sleeping on a luggage cart in JFK Airport in New York, because there isn’t extra funds to give you the luxury of a rest day, which should be in fact a few for people living with dementia. Advocating gives us purpose, it gives us hope, it provides us with the ability to help direct the change, it enriches our lives because it keeps our brains firing. What it is not, is glorified or feeding egos, I’ve been told we are egomaniacs, in fact I have never met a group people who are so selfless, the word ego doesn’t. Even fit in the same room.
None of us wanted this diagnosis we are trying to live with it with as much grace and dignity as we can, the last thing we need is to be beat up and criticized for trying to make things better for all those living with Dementia.