Last night we finally sat down to watch the first episode of Perception,a new television series on TNT starring Eric McCormack as Dr. Daniel Pierce, a professor of neuroscience with a brilliant mind – and schizophrenia. Because of this mental illness, he sees things in a different light, evidently extremely useful for solving crimes. How I could wish that my son Ben's hallucinations were so helpful. But this is reality. Perception vs. Reality I tried to watch the pilot episode with as open a mind as possible. After all it is just a TV show, and it is nice to see someone with schizophrenia be the hero for a change.  Still, I wonder about misconceptions being perceived as reality by those who know woefully little about schizophrenia as it is - including Ben himself.

"Ben is so lucky to have you." I hear that a lot, from healthcare providers who often don't even know the families of those they treat and from PAMIs (People Affected by Mental Illness) who usually add one of three things: their family has given up on them  - and they grieve the loss their family has somehow made their recovery more difficult and they are glad to have broken free from them, or their family has been a major part of their desire to stabilize, and they are so grateful for the love and support. One of the most validating things I heard at the NAMI National Convention was this, from the producer of a photo collection called 99Faces Project: that a UCLA psychiatrist was quoted as saying that the most important common link among those in successful recovery was this: someone who loved them anyway, and walked alongside them on the journey. I plan to be that for my son, carefully balancing, as much as possible, the letting go with the support when needed. That is a tough balance to achieve, but the success is in the desire to do so. This is Ben's journey, not mine, but I do always want him to feel our love.

We still hear it sometimes: it's the family's fault. "They were too demanding during childhood." "That mother is so overprotective." "No wonder you have issues; your parents are cold and withdrawn" "If we can just get you away from your family dynamic, you will recover so much more quickly." You know, maybe sometimes that is true.

I can't complain. Really, our family usually lives in a place of gratitude these days.  Ben is doing well. He actually has a job, after eight hospitalizations and ten years unemployed, and has celebrated his one-year anniversary there.  He cares about school now, and made Dean's List once again at college. (Got a grade of 98 on his Final Essay on how his stasis was changed by reading Macbeth. Wow.) Yes, we can't complain.  This is miraculous, compared to where Ben could have been. Compared to where he would be, without treatment. When asked how Ben is doing, I usually respond, "Today is a good day." I look to the sky to see if the other shoe is falling, but these days we are okay most of the time, certain that Ben is taking his meds and therefore inching forward with his life. We are grateful and relieved. But - every so often - grief sets in, for what we have lost. For what Ben has lost. For what could have been, if schizophrenia had not become our reality.

I've had the privilege of meeting many wonderful people who happen to be diagnosed with mental illness and look forward to many more. There are many stages we go through with any life change, and mental illness is no exception. Families have stages of acceptance, certainly the Person Affected by Mental Illness (PAMI) does too. * When I talk with a PAMI who is at a stage of acceptance of his mental illness diagnosis, takes her own meds without supervision and is living a functional, productive life, I often ask if there were any particular turning points in their recovery process. In particular, I want to know: Was there a moment when it clicked? When you accepted your diagnosis as true? Not once - not once! - has anyone said, "My mother finally convinced me I have schizophrenia."

Getting a diagnosis of schizophrenia, or any mental illness, after years of confusion, judgment and blame is both devastating - and a relief. For Mental Health Awareness Day, here's how it felt for our family. Watch.

It's May: Mental Health Awareness Month - and I hope you had a great Mothers' Day on Sunday. Last week, I had the opportunity to present at the APA (American Psychiatric Association) 165th Annual Conference, about the value of a "therapeutic alliance" between caregivers (often families), healthcare providers, and PAMIs (Person Affected by Mental Illness -a word I use instead of "patient").  My co-presenter was Peter J.Weiden, MD, who advocates for the same respect, partnership and open communication. My "credentials", next to his "MD"? Randye Kaye, MRG (Mom who Refused to Give up). Yes, I have other letters that could go after my name - but those are the ones that really matter as I speak to audiences about our family journey.

"Katy Jones" is now a high school student. She might not have made it past the seventh grade, though. It took a watchful teacher and a caring school psychologist to take the action that Katy's family was afraid of: admitting Katy for help when the risk was that "people might think she's crazy."

[caption id="attachment_811" align="alignleft" width="170" caption="a reminder of hope - and the need to be prepared"][/caption] Today is my son Ben’s 30th birthday. Whoa. How did this happen? I know every parent feels this same sense of disbelief as their children celebrate milestones; still, when your child has dealt with serious illness, that sense of wonder is enhanced by the fear you have felt in the past. I remember asking myself: will Ben even live to be 30? I know there are many parents who share these fears for many different reasons – even with perfectly healthy children, fear of losing your child is part of the beautiful package of love. No, Ben has  not been diagnosed with cancer or heart disease. He has not been deployed to a war zone. Ben has schizophrenia, a physical illness of the brain. Yes, it has changed our family forever. But is it life-threatening? You bet it is.

[caption id="attachment_794" align="alignleft" width="170" caption="Senator Tom Daschle Delivered an Inspiring Keynote - including an encouraging answer to my question about the Value of Personal Stories to Healthcare Reform!"][/caption] What a week! Had the privilege of speaking with behavioral healthcare providers and more at the 2012 National Council Conference in Chicago. I not only got the chance to share our family story - from chaos to recovery -  in a session, but I also got to meet Healthy Places' Breaking Bipolar Blogger, Natasha Tracy in person, attend her session "To Blog or Not to Blog", and share some amazing tapas with her at an Iron Chef restaurant!  Natasha is a wonderful writer, and amazing person. We had a great time. The education track for my presentation was called "Personal Stories of Recovery." But it can't just stop with the story. We tell our stories of mental illness for a purpose...and, in this case, I asked the group to note, as they listened, which provider actions worked to help my son, Ben, and our family through crisis to recovery, and which did not (or even made things worse). Here is the "Top Ten List" that was the take-away: