I suppose I'm starting this site the same way I started my own experiences with caregiving. Unexpectedly. Cautiously. Carefully.
This is my second go-around with caregiving in my life and yet I find I'm no better prepared to navigate it than I was the first time. Things have only gotten more complicated, more confusing and more challenging. Add in trying to manage my own life and a full time job and this is a rough road.
For the vast majority of us, it’s a matter of when, not if, our lived experience will involve navigating the complexity of life with a chronic illness, short- or long-term disability, or complicated aging. Personally, I've lived with chronic pain and migraines much of my life. I've experienced short-term disability on a few occassions. And I'm currently in my second instance of being responsible for and managing the care of a senior relative experiencing complicated aging. My experiences are my own and while I can't understand exactly what another is going through, I can empathize with all the things that have to be navigated.
As I've learned more and more about what I can do, what I should do, what I need to do, I've also been meeting a lot of people like myself. Juggling too many things all at the same time and just trying to figure out how to put this puzzle together.
I've been a professional journalist, writer and researcher for the past decade. My day job is literally finding information and I struggle on a regular basis to find all the pieces, let alone understand how to make them fit together in order to best take care of the people I care about. That's why I decided to start CareFully.
The idea behind CareFully is to dedicate space to documenting, organizing and structuring all the different resources, services, systems and planning that goes into navigating life with or caregiving for someone navigating life with chronic pain, chronic illness, short-term disability, long-term disability or complex aging.
This will be a slow-project. I'm doing this along side my primary job, but my hope is that through slow and steady work, this site will become a useful resource as we all do our best to navigate systems that are—bluntly put—complicated, confusing and intimidating.
The goal is to speak plainly, respectfully and frankly about navigating life when the body or mind doesn't quite cooperate the way we'd like it to. I endeavor to use language that is respectful, appropriate and mindful of the preferences people have when it comes to describing health conditions, the experience of aging, and the identities that come along with both. I will use person-first language, however if I speak to someone who prefers to be referred to in a specific way, I will respect their choices. There is a wide spectrum of feeling and opinion on the use of language and I respect the choices of people who want to re-claim certain labels or terms for themselves. I am always open to feedback regarding this and welcome you to get in touch with your thoughts.
As much as is possible, I will always endeavor to consider and reflect the ways that various identities impact people's own experiences and this site and any associated community spaces will always be welcoming to people of all backgrounds, races, gender and trans status, orientations, abilities, and beliefs.
Transparency, accountability and open communication are a key aspect of how I approach this work. As much as I wish it were true, there are few simple answers or easy plans when it comes to this topic and everyone will have different experiences with these life events and the systems, services and resources that are available.
As for how you might interact with this site and its content...if you read anonymously, subscribed to newsletters, sign up or comment in any way, your information will never be shared or sold. These are sensitive subjects being discussed and your privacy will always be respected and handled with the utmost care.
What can Carefully become over time? I'm not sure. I have some small ideas and some big ideas, but what I hope most is that it will always be kind and it will always be useful.