Sunday, September 11, 2011

Help us help NAMI

MB adding to the PeaceLove at the walk in 2010.
Every year, I do a post on my brother Paul, mental illness, and NAMI, in hopes that I can persuade a few of you either to walk with us or to make a donation to NAMI.  Actually, even more important than that, I want you to know what NAMI is, because someone you know needs to know about NAMI.  I've written before about NAMI's phenomenal Family to Family program, and about the walk itself, so I'm going to tell you another story, one that I haven't blogged about before.  (See similar posts from 2008, 2009, 2010.)

NAMI is the National Alliance on Mental Illness.  It is an organization that started in the grassroots; family members of people with major mental illnesses banded together to try to demand something a little better for their loved ones.  And now, NAMI is in every state and has parallel organizations in many other countries.  NAMI offers support and education for people with mental illnesses, their family members, and those who provide them with care.  They also do a ton of lobbying and advocacy work.

My parents got involved in NAMI in my hometown in Texas not long after my brother Paul was diagnosed with schizophrenia in 1994 (his diagnosis was later changed to schizoaffective disorder, bipolar type).  When my mom died in 1999, and later when my dad died in 2002, NAMI folks showed up in full force at the house with food, at the funerals.  The names and faces hardly registered, but I knew that NAMI people were good people.  In the months that followed, I would occasionally get an email from a NAMI person in Texas who would report to me that they had seen my brother somewhere in town, and he was fine.  It meant a lot.

About 9 months after our dad died (and right after i sold the house), Paul completely disappeared.  I was beside myself.  I was living in North Carolina, and he had last been seen in San Antonio, Texas.  After about 6 weeks, he surfaced in a hospital in San Antonio, Texas.  I learned this when a social worker, who had (miracle #1) managed to track down my phone number, called me.  I spent about 2 weeks on the phone with her trying to figure out what was next for Paul.  It's funny to think that what turned out to be such a defining moment of my life happened on the phone with a person I had never met, and would never meet.  Suddenly, I was agreeing to wire money to San Antonio so that Paul could be put on a bus to me.

I hung up the phone and googled "NAMI Durham NC."  I called another person I had never met before, a volunteer named David.  I explained my brother's illness and that, if all went as planned, Paul would be showing up in Durham in about 48 hours.  How could I get him medical treatment? Housing?  Other social support?  He had a ton of ideas for me--names, numbers, He shared some of his own family story as well.  He assured me that everything would be okay--or at least as okay as these things go when you are dealing with mental illness.  He also encouraged me to call him again if I needed anything else.  (Although I didn't call him again, and never met him, we since become Facebook friends!)

Well, Paul's journey didn't quite go as planned.  The voices and/or the Greyhound personnel kicked him off the bus in Montgomery, Alabama.  (I've never been sure what happened.  I've also realized what an incredible lot it was asking of Paul to get discharged from the hospital and get right on that bus.  It's a miracle (#2) he made it as far as he did!)  Miracle #3 was that I happened to have a friend who was planning to drive from Birmingham, Alabama, to Durham the day before this all happened.  He was delayed by a day, and was happy (he actually insisted!) to swing by Montgomery on his way to Durham (probably 3 hours out of his way).  Miracles #4-6 were that Paul was able to spend the night at a truck stop, he called me with an address, and he was actually still there when my friend showed up the next morning. (Wow, that sounded far too easy: he also called me every 10-15 minutes all night long.  Literally.  But I told him to.  I told him that if the voices told him to leave that spot, he should call me, and I'd tell him not to.  Every few minutes.  All night long.  Worst night of my life.  And miraculous, guaranteed.)  And Paul made it to Durham, a mere 20 hours later than planned.  And, thanks to David and NAMI, he saw a doctor within 48 hours and had housing first thing Monday morning.

Now, having been much more involved in NAMI, I could tell you a ton of stories of the ways NAMI, or one of their support groups or classes or volunteers, has thrown a lifeline to a person or a family struggling with mental illness.  For those of us who have mental illness in our families, it is such an isolating thing.  You want to keep it quiet, for the sake of your loved one.  But it is so healing when you realize that your family is not alone in this struggle.

The statistic is that about 25%, or 1 in 4 adults, has a diagnosed or diagnosable mental illness.  As Jeff Sparr of PeaceLove Studios likes to say, that number is high enough that 100% of us know someone who is struggling with a mental illness, whether we know it or not.

So, what do you say?  Can you walk with our team, Paul's Pals, at Roger Williams Park, at 10am on Saturday, October 1st?  Click here to join our team.  Can you sponsor one of our walkers?  Click here to sponsor my brother Paul.  (If you want to sponsor me, click here, but know that I'll be completing my 5K in Rome this year.)

The most important thing is that you file away that name: NAMI.  When your co-worker tells you her son has been having some issues, when your cousin mentions some trouble her sister is having, when your neighbor is clearly dealing with some depression.  Send them to NAMI.  It can really help.


Rachel said...

I'm reading this minutes after getting off the phone with a friend whose adult son with an untreated anxiety disorder is going to be visiting in two days. I think I need to call her back...

Trophy Daughter said...

I have also found NAMI Durham to be a lifesaver. My parents are still alive but refuse to believe my sister is mentally ill. Jerri was living about 10 miles from them and everytime she became unstable, they said she was abusing her prescription meds and stopped answering her phone calls. About 18 months ago, after a call from her property manager, I realized Jerri couldn't manage on her own and I couldn't provide enough support long distance. So my husband and I moved her to Durham. One of Jerri's friends put me in touch with Carol, a NAMI volunteer in Greensboro, who then connected me with Vicky, a NAMI volunteer in Durham. They told me about Durham Center Access and guided me through a number of difficult situations. I've also taken the Family-to-Family class and am a huge fan. I recently started a blog which I hope will become a community for those of us supporting siblings with brain disorders. Hope you will stop by the blog and check it out: