The State That I Am In

Happy World Cerebral Palsy Day! Thus proclaims my Twitter account, along with several thousand others today. I posted the message this morning, along with the assertion that I have a PhD – because this is what parents of newly diagnosed children need to hear. I think it’s why they approach me at conferences to confirm my disability. Why support groups are so valuable. Parents need to know that, while they might feel like they’ve been hit by a bus right now, a life lived is still possible. And I guess, it’s what people need to know, too. Since everyone who isn’t currently disabled will end up disabled one day, hearing that it’s manageable is important. Maybe. The message was retweeted from my account several times.

Twice in the last month I was told that the work I do is admirable, given the cerebral palsy. That in spite of it (and people’s reactions to it on the street) I do have a PhD and a full-time job. I want to scream at these people. Not to say  how dare you patronize me?  -because this was never their intention – but to tell them that this isn’t the real battle I’m fighting. Tell them how easy it is to cope with physical disability vis-a-vis  mental illness.

I want to tell people how difficult it is to feel acutely suicidal on a Monday morning after a triggering weekend – to be in bits and not at all yourself – and then to deliver an undergraduate lecture an hour later. To act as if everything is fine, just hoping the mask doesn’t slip sideways to reveal the truth. How tough it is to get out of bed and into work before any of that ever happened. To worry about losing your job because a colleague has raised “concerns” about your appearance.  To not be able to perform as well as you want to. To worry about how much you are hurting people around you, especially those brave enough to try and help. They are only trying to help. And you do that to them.  The fear of letting people down.

light-in-the-dark1

I want to explain how hard it is to sit in church of a Sunday, and hear miracle healing stories of physical disability aplenty – but none of healing from mental distress. To think instead that the Christian thing to do is to tolerate and bear such distress patiently and faithfully – that good attitudes in the face of it are what God wants. That I have control over my reaction to darkening moods; worse that I cause the moods. That getting help might be weak.

It’s harder to find God in mental illness than in physical disability. Harder to understand what is happening, what His role is. The fight to see Her, to pray, is draining. I have to remember that whatever state I am in, physically or mentally, whatever I can or cannot do, I am still worthwhile to God.

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