(Photo: not always a poster boy!)
[Apologies in advance to those I offend with the following post.]
A friend of mine used a term the other day: compassion fatigue. A numbness to the horrors of a particular situation, usually due to overexposure or experience. It’s a risk to which all front-line healthcare and caregiver professionals are exposed and unfortunately, often succumb.
I’ve been thinking about this recently because I’ve been wondering how I can pass along my experience and (dare I say) wisdom for the greater good. Working with parents and families who are struggling with this journey seems like an obvious option, but I know that as a ‘calling’, it’s not for me. My compassion fatigue is just too high.
It’s not the stories themselves I have a problem with. I think sharing and venting can be helpful. It’s more the identification and attachment to the stories I get impatient with.
I wonder, as I wade through the masses of blog posts and articles and stories I compulsively read every day: (Get ready – this is going to sound SOOO awful…) So what?
Yes, it’s hard. Yes, it stinks. Yes, we’re all tired and we hate the government and the schools and the people who stare and the diapers that leak and the pumps that break and we hate even the very IDEA that all of this is for a reason… Yes, yes, yes.
I ask again: So what?
And I add: And so now? What are you going to DO about it?
Don’t get me wrong. I have been SOOO stuck. Absorbed in my life as THE MOTHER OF A CHILD WITH DISABILITIES. I have been there many times and no question, will be there again. (It takes many forms, by the way. Fatigue, despair and worry, sure. But also a hyperdetailed focus on planning, scheduling, advocating, therapy, improvement, involvement… Can you relate?) But always, there comes a time when I so thoroughly bore myself with my stuckness I have to claw my way out and paint or write or go for a run or build another website. These are not momentary escapes from the drudgery of caring for a child with disabilities – these are gateways to sanity. The decision point to move on and get a life.
So you see, I would be really bad at working with families or parents. “Get a life” might sound a little harsh.
I liked your post…it’s not offensive, but I know that you know that it’s just not that simple, is it? With the severely disabled, you can’t get a life without help. No help, no life. While the ministry of health in Ontario has just misspent a billion or so on some stupid computer scam, my case manager is turning away parents with kids like ours saying…there is no money for help. A nursing shortage…no help. If you have help, is it good enough for you to leave your kid with….alone? Consider yourself lucky if your child goes to school.. mine doesn’t because they won’t let me accompany her as her helper, there aren’t any nurses to accompany her because the nursing provider can’t actually “provide”…on and on. Single parents…no money, no help, no life. What have I done about it? Well, we have contacted the ombudsman who is now in serious discussion with the ministry of health trying to change legislation that limits the bulk of funding to the currently non-existing nursing AND I blog!! Great friends, great conversations, people who understand…all the while in my own home, supervising my child. The other thing is that people may complain in their blogs…but isn’t that cheaper (and more accessible) than a therapist? No one in my “life” understands our situation…nor do they care to. My blogger friends get it…big time…and I love them for that.
Hey Claire, thanks for the comments…
I have to admit I find it exhausting to try and present all the sides to everything I feel. As always, my blog posts are a moment in time… Thanks for rounding out the dialogue :)
J
I know…and my comments often sound much harsher than I intend them to sound! I should probably learn how to use those smiley face things….trying….trying…gonna have to ask the eldest!!!
I get this — mainly the boredom part. I’m so fucking bored sometimes with my life as a caregiver that I could scream. But even that scream is boring! Thank God for books and movies and good food and my dear, dear friends. Thank God for the bloggers whom I love, for those who make me laugh. Thank God for my dogged sense of humor. And thanks for this most honest post.