Last week I wrote about how my professional and personal worlds are colliding now that I’ve started working for a project that advocates for kids (of all kinds, but especially with special needs) and their families in healthcare reform.
Sitting down to my journal this morning, I flipped back through the past few weeks and noticed that Disability — as both theoretical concept and a pragmatic reality — hasn’t just seeped into every corner of my life: it’s pushing out nearly everything else. It’s filling not just the huge blocks of time I think of as “work time” and “family time,” but even the small slivers of time in between, not just the thoughts but the space between the thoughts, permeating my consciousness from the moment I start journaling at 5am to the last few moments of each day I spend reading every night. (The book right now is required reading on the evolution of disability rights, I kid you not.) The many, many moments in between — checking email, talking to friends (often also parents of kids with special needs), planning for the future, running errands and making calls (picking up meds and scheduling specialist appointments) leave little time for other things.
The irony is not lost on me. In the process of trying to build a life unimpeded by the limits of disability, it looks as though it is taking over like a kudzu vine. In an effort to move beyond disability by becoming empowered by it, I have become ensnared.
It’s cause for concern. This level of immersion in the stories of others and their challenges leads to a sort of vicarious trauma that will surely lead to burnout. And surely no one feels like hanging around a walking protest sign. At moments I bore myself.
And yet… (yes, there’s always an “and yet….”) it strikes me that the seemin
g claustrophobia that Disability is playing in my life right now is in fact a cocoon; there’s no way for me to metamorphosize to the butterfly-hood that is a joyful, inclusive, authentic life without being held completely captive by this for a little while. In my struggle to break free, my wings grow stronger and eventually, when the threads of the chrysalis release me, I will be something completely different than I was before.
At least, that’s what I hope.
I’ve just been introduced to your blog and already love it; dare I say I might be addicted. In the context of what you are talking about, that can be dangerous. As the mom of a 16 year old boy with intellectual disabilities (Coffin Lowry Syndrome), I so identify with disability filling every “gap” in my life. Add to this that I actually see my son as my “easy child”, compared to my 12-year-old daughter with anxiety issues, and you can guess that I have to be careful what I add to my life, including simply reading a blog. The fact is that I have created a cocoon for our family, simply for survival. I haven’t been in the workforce since my son was born, although we absolutely need the money, and I take on only small volunteer projects – nothing where anyone depends on me too much – with some trepidation. Recently I joined the steering committee of the key organization in our area for people with intellectual disabilities, and had the opportunity to point out that they may have difficulty getting parents out to evening (or any) meetings when those parents have few options arranging care for their dependents (many of them adults) for the occasion. It feels really good to be able to make a tiny contribution when I can manage it! While the cocoon is almost unavoidable, it’s definitely necessary to avoid isolation, for our children’s sake as well as our own. I keep reminding myself that I’m the best person to do the education, saying “HELLO, HERE WE ARE, OVER HERE, WE’RE IN THIS TOGETHER…” to my community. We’ll all be better and stronger for it in the end. But P.S.: find a corner of your life to tend to your own creativity, or at least some yoga!
Thanks Diane! Glad to meet you and we will definitely need to connect more off-line (I’ll send a note) about CLS and the work you’re doing for your DD org. But to your point above, I should clarify that ironically I’m not isolated–I’m out and about, but just that it’s eating, sleeping, drinking in the special needs world, and I miss my own hobbies (including yoga and some artistic pursuits–how did you know?) that are outside the disability world. But I do believe this is temporary; I just started this new job a couple of weeks ago and the fellowship sadly ends in two months. For now, my strategy simply involves “just saying no” to the elusive balance and embracing this for a bit. 🙂