NAMI National Convention:Where We Need to Be

Chicago. Ben is still in the hospital back in Connecticut, and I am here - at the NAMI National Convention.  This isn't the first time I've had to make this decision. Six years ago, in 2005, I left Ben to go to St. Louis for another NAMI function, so I could become a state trainer for the Family-to-Family program. Then, as now, I don't regret my decision. Ben is in good hands (City Hospital staff is wonderful, and Ben is responding - knock wood - to his meds at last) and his sister and brother-in-law are nearby to visit and, well, just to be there.

And, as one speaker reminded us yesterday, Ben has to take care of himself too. I can supply the support, the framework, put the pieces into place - and will continue to do so - but this is Ben's journey too. And, for now, my best decision is to take care of myself. So, husband Geoff and I hit the road on Wednesday and drove 14 hours to be here.

The right decision. Here, I am surrounded by a couple of thousand of people diagnosed with mental illness (including Jessie Close of BringChange2 Mind),  families of those diagnosed (including newsman Bill Kurtis and journalist Pete Earley, author of Crazy: A Father's Journey Through America's Mental Health Madness) and friends both personal and professional. This is where we all need to be right now - talking about everything from proposed budget cuts for Medicaid (talk about crazy!) to the need for Assisted Outpatient Treatment (the lack of it in Connecticut - one of the only six states without it - is the reason Ben has had his relapse).

We all need to be here. We all need to share, advocate, learn - and, yes, laugh. So much has been done, so much needs to be done. I'll share more when we get home. Right now there's a workshop on Supported Housing and I'm on my way.

Bring Change 2 Mind

Want a wonderful site to learn more about advocacy and acceptance? Check out http://www.bringchange2mind.org/.  Glenn Close, co-founder, will speak to neuroscientists in November.  Also, as always, check out NAMI for education, support, info - national at http://www.nami.org/ or your state affiliate.

Ben received an evaluation from his drama professor, who has no idea he has schizophrenia. Evaluated him against professional acting standards.  Effort? An A. Acting skills? B- or C+, maybe (and the acting skills grade in the one that he will probably get in the course).

My own inner voice is shouting "not fair!!!" Would a physical education professor penalize a runner with an arthritic knee for not being able to win the race?  Ben is devastated.  For him, memorizing and delivering his monologue, knowing and executing all his blocking and lines, being a reliable cast member - he thinks he did a wonderful job. So do I.  Every class attended, every assignment in on time -- is it fair to grade according to these exacting acting skills alone? Especially when Ben's scholarship depends on his grades?

If he hadn't tried, I'd leave it alone. But his commitment and hard work were never in question.

The dilemma: do I tell the professor about how hard Ben struggles sometimes just to follow a conversation, much less remain focused for an entire play?  Does he know what a miracle it was that Ben completed this?  Do I, as Ben's conservator, step in and give the professor this info? It soesn't seem fair that, now that Ben can "hide" his symptoms with the help of meds that also dull much of his energy, for him to be graded on a lack of physical energy on stage.

Dilemma. I so want to Bring Change 2 the Mind of that professor....