Compassion Fatigue

I have always understood compassion fatigue to be the sort of burnout that occurs in those caring for someone with a chronic illness like Alzheimer's or someone affected by Post Traumatic Stress Disorder. And while I don't pretend to know, really, what the medical meaning of compassion fatigue might be or its diagnostic criteria, I will play loosely with the term here in this post.

As I was driving one of my sons to his flag football game this afternoon, I started thinking about the Epilepsy Walk that we're doing tomorrow afternoon here in Los Angeles. This is the third time we've raised money and gone to the walk, and while it's the year where we've raised the least amount of money, I can account for that because of the general state of the economy. But interestingly, our team of walkers has dwindled down from about twenty plus people when we first did this two years ago to just our family tomorrow and three friends. I don't think this is from any lack of support from my friends or family -- Lord knows that I would be dead if it weren't for the love and support I get from so many truly generous and wonderful people. What I'm thinking, though, is that there's a sort of compassion fatigue that happens when you're in it for the long haul.

The other day, one of the members of our small community fell and broke his leg badly at a soccer field. Almost immediately, an email chain was sent out requesting dinner sign-ups for the man's family that includes three young children. Now, this man is an amazing person who volunteers to do just about anything -- he is the soccer commissioner, the Cub Scout pack leader, and a seemingly tireless father to his three boys. His wife is equally as committed to their school, their church and all the extracurriculars that come with such a busy family. My point is that our community knows this and values this, so during a crisis, everyone steps up. Within literally minutes, every single dinner for the next month had been contributed and several people volunteered to make the kids' lunches during the next week or so. It was a beautiful testament to community, and I am proud and honored to be a part of it. Much the same happened almost exactly one year ago, when a young guy in our community was in a terrible skateboard accident and suffered a severe head injury. The community jumped to the family's aid and the outreach was just incredible to see.

But back to compassion fatigue. All of this was running through my head as I drove my son to his game. I have to hire a babysitter on Saturdays for Sophie so that my two boys can even do their sport activities. We really can't afford a babysitter all day on Saturdays but the alternative, to me, is even more expensive. I couldn't possibly drag Sophie in and out of the car all day and have her sit in the hot sun while Henry and Oliver played flag football, baseball, and soccer. I couldn't in good conscience watch her seize under that hot sun or even allow the boys to go to their games without a parent there to witness their boyhood, cheer them on and smile at their achievements. I couldn't imagine depriving them of these experiences, either. The Husband is a chef, and everyone knows that Saturday is probably one of the busiest days of the week, if the not THE busiest, so he really isn't available. So I hire a babysitter who takes care of Sophie at home all day while I run around willy-nilly from sporting event to sporting event. And the boys have a bit of normalcy and, well, so do I. I actually hate sports, but not when my boys play. I LOVE to sit in an athletic chair, under the sun, and watch my two glorious, healthy athletic boys revel in their lives. It's a freaking relief for which I am completely thankful.

And where, you might ask, does compassion fatigue fit in? Well, as I thought about this man with the injured leg and the boy with the head injury and the amazing response of our loving community to these accidents, I sort of, kind of wished and wondered why the same community didn't come out in full force and walk with us for Freedom from Epilepsy. For the tiniest second, and I mean tiny, I had the thought that my outspoken-ness is offensive and that even this blog forum might have offended people who ordinarily might support us. But then I thought that's just paranoid (not to mention narcissistic and all about me) . I began to articulate, in my thoughts, the idea that compassion fatigue is something that others might even have for us. You can't raise money for epilepsy research for over fourteen years and not eventually hit a wall, is what I thought.

Crisis becomes every day. Compassion gets tired.

I  wish sometimes for people to take Sophie for walks around the neighborhood or perhaps even a stint at an overnight with her (because she has seizures during the night every single night and one of us always sleeps with her). I wish these things only idly, though, and certainly with no complaint or resentment because I am secure in the knowledge that everyone knows our family and loves them deeply. What strikes me, though, and I'm certain it is the case for many families like ours who work day in and day out caring for a disabled child, is that when you're not in a technical crisis, you're basically left alone. No one could possibly help our family, day in or day out, and I don't expect anyone to, really. And I know, too, that at least from the outside, most people think we're doing just fine. Not a day goes by that someone doesn't say that they don't know how I do it or that you're so calm and chilled out. My husband is regularly called a saint, and the two of us laugh at how we know the real truth about each other and it's often not pretty.

I don't know what the answer is to this, really, other than I need to be more gentle with myself and with my husband and with my sons as we live this life. I understand compassion fatigue, the way I interpret it, in myself, in my family and even in my community.

I think, too, that I must work harder to raise awareness about seizure disorders and perhaps, instead of raising money for cures and research, work instead to help raise money for respite care, for recreation and inclusion opportunities, for care facilities that are beautiful and humane where children like mine have a place to go as their parents age or reach a point where they just can't do it anymore.

In the meantime, I thank my parents for helping me with money for childcare when my respite money dries up. I thank my husband who works so incredibly hard for our family and, when I'm practically choking on despair tells me that we are giving Sophie a happy life. I thank Mirtha for her Saturdays, away from her own children, caring for my daughter. I thank my friends who listen to me always. I thank those who have donated money year in and year out in support of our cause. I thank those who wanted to be at the walk tomorrow but who weren't able to be. I thank those who will be there, walking with us. And I thank my sons who despite this crazy life they lead, kick and catch balls with amazing beauty and look to me, watching them, with smiles on their faces.

And to those of you, like me, well, I love you. And you know why.