Apologies to my readers, new and old, for not having blogged for a few weeks. I was in London last month participating in an international conference on schizophrenia recovery, and lots of energy went into that experience. The conference organizers had read Ben Behind His Voices, and so I was asked to share my experience as family caregiver (or, in UK_speak, "carer"). As you might imagine, I learned a lot more than I shared. The main lesson, reinforced: When a loved one develops schizophrenia, feelings have no country borders. We do not stop loving when mental illness moves in. We do share feelings of grief, anger, confusion, determination, resentment, loss, helplessness, and more. I connected first with Georgina Wakefield, my UK counterpart in many ways.
Mental Health Village of Providers
My son, Ben, who lives with paranoid schizophrenia, is in the process of rebuilding his life. After years of feeling buried under symptoms, distracted by hospitalizations, rejected from opportunities, and feeling left behind by friends whose lives had followed more predictable paths unfettered by mental illness, he is also (dare I say it? Yes!) reclaiming his future. So far, so good. Living with Mental Illness. Steps toward Recovering Life. Reclaiming his future. How delicious. How marvelously hopeful. And it's a phrase I heard echoed this week at a breakfast briefing of the International Center for Clubhouse Development (ICCD) in New York City. I love this phrase, because it's not only full of hope, it is full of truth - for those who manage to find their way to a Clubhouse, embrace its community, and take advantage of its opportunities.
Is living independently the right goal for everyone? Whether or not you live with mental illness, I think the answer is: no. For some? Sure. For others? Disaster - or at least not the ultimate goal. Dangers of Sudden Independence One year ago my son Ben "graduated" rather suddenly - too suddenly - from his place in a group home with 24-hour supervision to his very own apartment. Within one month, we needed police intervention to remove him from that same apartment, where he had isolated himself in confusion and fear after missing his meds for a couple of days - and most likely cheeking them whenever he wasn't closely watched before that. Why? Certainly the rug was pulled out from under him way too fast - whoosh! You now are expected to function without structure, community, or purpose. Good luck with that - but also, for Ben (who is a very social person, even with his schizophrenia), he was, well, lonely.
When my son, Ben, was in the first stages of recurring psychosis from schizophrenia, we were waiting for him to get "sick enough" to finally earn a bed in a psychiatric unit (don't get me started on this). During that period, we had many encounters with our local police officers while Ben, and the rest of the family, were in crisis. I am so happy that these officers were trained in mental health crisis intervention. I am thankful for their kindness and empathy toward Ben, Ali and me which made our traumatic situation more bearable. Even more importantly, their CIT (Crisis Intervention Training) made it possible to avoid the trauma-upon-trauma pile-up of emotions that could have escalated the crisis instead.
"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.
It’s all over now except for the party - three days of brain overload at the NAMI National Convention in Seattle. Still absorbing the stories we’ve heard, the new research shared, the legal issues and obstacles we are trying to overcome, the many ways this community is trying to make a difference. One recurring theme, for me, has been hearing mental health stories of recovery and resilience. In so many of these, there seems to be a running thread that I believe is also a huge part of our story: 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.
Employer of the Year! There is no plaque, no luncheon, just my undying gratitude for not letting my son's diagnosis of schizophrenia get in the way of keeping him on as a valued employee. For that, Ben's employer - and any employer with the foresight to see and treat mental illness the same way you'd look at any other illness - gets my personal award for "Employer of the Year." Thank you.
[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:
Ever since my son's diagnosis of schizophrenia, we have had to work around his strong desire to live without his mental health medications. In the past, he has refused them, cheeked them, thrown them up after swallowing them. They've been hidden in his pockets, his closet, in the bottom of the garbage. Things are better now, but mostly because we are on to his tricks. I'd like to think he is cooperating because of some insight--but the most probable reason is that he simply can't get away with not taking his psych meds anymore.