Family to Family

Back to teaching NAMI's wonderful course, Family-to-Family. As always, the love and confusion, the bravery and frustrations of these families amaze me.

Yesterday I taught an acting class; one student, wheelchair-bound, was accompanied by his father who took notes, gave physical aid and emotional support. Parents who are "awarded" the responsibility of a child with a disability, whether physical or mental, face many of the same challenges. These parents will not be able to look ahead to the day when their child is totally independent. There is no clearly defined light at the end of any parenting tunnel ...but when your child is disabled, that light is dimmed even more.

Still, the love is evident.

My child, who is 27, can at least walk by himself; he can, when balanced by his treatment, do many things without me. Sure, we still drive him to saxophone lessons, supplement his meager income, take him grocery shopping. He may never be totally on his own. But there is much to be grateful for.

A terrific novel, exploring the family role when there is disability, is Jodi Picoult's Handle with Care. Love is complex, unpredictable, immenseley valuable, and not always easy.

Beyond Trauma

I had the pleasure of presenting with Linda Appleman Shapiro, author of Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness, last week at the library in Ridgefield, CT. Each time I tell Ben's (and our family's) story, I see at least one face in the audience that seems to open with relief: Can we really talk about these secrets? Is mental illness really not the source of shame I've been assuming it is?

Yes, let's talk. A mental illness is just that: an illness. It is no one's fault. It just is.

Great books for practical advice:
When Someone You Love Has a Mental Illness by Rebecca Woolis
I'm Not Sick, I Don't Need Help - Xavier Amador - great info, "system" doesn't alwayswork, but helps understandng greatly
and - believe it or not, for basics - there are "dummies" books for schizophrenia, bipolar, etc.

What familes need:
Support
Education
Acceptance (Letting Go)
Reality check, Respect
Comunication
Hope - and, yes, Humor

It spells SEARCH.
My son Ben is living a very worthwhile life, filled with love, even with paranoid schizophrnia. Even so, my expectations have changed. It is a new normal. R for reality...

Bride's Best Man

My children gave me away this summer – I got remarried. At toasting time, my daughter Ali got so emotional she couldn’t finish her speech, so her big brother Ben put his arm around her, gently took the microphone, and finished for her. He began with, “First of all, Mom, you look so beautiful tonight”, and the entire room burst out in applause. Ben’s toast was one of our favorite memories from the wedding, especially because he rescued his sister when she couldn’t go on.

Ben is not “supposed to” care about others. He has paranoid schizophrenia. But he does. He is full of love, and we are grateful for his presence. Our family lives in the moment; there are, thankfully, many moments to treasure. We know, all too well, that tomorrow could bring change. Still, we have found hope and love that we once thought might be lost forever.

I am so grateful. There was a time I never imagined I'd have such a gift; there was a time, way before that, when I took its possibility for granted.

insight?

So yesterday Ben was visiting for the weekend (we went to see two outdoor theatre productions, which he loves - and I think he followed the plot of Much Ado About Nothing better than my fiance and I did...), and he told me that he'd been talking to another person who lives in supported housing with med supervision, etc. He said - and I quote - "He's diagnosed with schizophrenia, too." - WHOA! Milestone. Ben seldom acknowledges his diagnosis, and I"ve learned not to bring it up.

I simply said something like, "Oh- that's interesting", but inside I was heartened. One more baby step. If I don't push, if I let the journey be his journey, if I keep the right combination of letting go and encouraging progress, hope lives.

This morning there is an article in the paper from the AP, "Scientists try to stop schizophrenia in its tracks". Schizophrenia's prodrome - validation for need of early detection. http://news.yahoo.com/s/ap/20090726/ap_on_he_me/us_med_stopping_schizophrenia

Dean's List

If anyone had told me, 5 years ago, that my son Ben would return to college, earn and A and a B - to make the Dean's List! - and would be feel enough to drive me to work as I recover from hip replacement surgery, I'd have been both doubtful and grateful. Grateful for the hope and faith, doubtful because it would have seemed like such a pipe dream. Even now I know it's best to stay in the moment; really, the only way to approach happiness of any sort. Feel it, appreciate it, live in that happiness. Don't think about what the success may predict; just know that there is success.

Ben, who began this semester by refusing his meds - afraid to succeed? - finished with the best results since eighth grade. There is hope; there is a maturation process, there is recovery, no matter how slowly it progresses.

I am SO proud of Ben!

Daring to Hope

As Ben grows, and grows up (he will be 27 next week), it seems increasingly clear that his maturation process is in slow motion - but that it is happening, however slowly. This gives me hope, and great joy - as long as I remember to stay in, and enjoy, the present.

The Medicare issue seems to be resolved for now - a few calls and one visit to the Social Security office, where even the caseworker struggled to understand the government language of the letters I've received as Ben's conservator. I felt much better, and less stupid, after witnessing that.

Ben has called me three times this week with good news. Twice to tell me about good grades for his school assignments (!!!), and once to tell me he has a job interview on Saturday, which his job coach will help him prepare for. Yes, there was another call with another agenda - he and a night staff person in his group home are butting heads, and it's frustrating for him; but all in all, the good news calls outweighed the calls for help, and that's a miracle I'm savoring. I do think Ben is showing amazing progress, especially now that he's been on his medication more consistently, and out of the hospital for a few years. Could his brain cells be in repair mode, as research suggests?

If the other shoe falls - and family members of people with mental illness live with that, always- I know we'll handle it somehow. Meanwhile, I'm choosing to be happy! And to notice that Ben is showing signs of maturity that I prayed for while he was in high school, in what I now know was the early stage of his illness. He's doing his homework! He's even earning extra credit. He does not WANT to miss class.

So he's ten years behind in exhibiting these signs. Ten years behind kids who are luckier than he was - lucky enough to have unimpaired brain chemistry. This is still progress -and I'm so proud of him. Let this be a sign of hope to parents who are still lost in despair. There is hope. Patience. Do your best, and savor the good moments. With luck, there will be more of them ahead.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal
contact Claire Gerus, cgerus@comcast.net, literary representation.

Medicare premiums stopped?

The notice comes from Social Security, informing me that "The State" will no longer pay for Ben's Medicare - as of two months ago? No reason given. What? What does this mean? Is he without Medical Insurance then? He has no income, and is trying so hard to get his life back. For the first time in three years, he's in school and actually loves it - doing his assignments, taking the bus every Tuesday and Thursday. His benefits add up to under $900 a month, from SSI, SSDI and a housing supplement. All this to pay room, board, bus fare - with about $25 left each week for all other expenses (including buying lunch at school). He cannot possibly afford to pay for his own Medicare. What gives?

So I call Ben's caseworker at his house, who is sympathetic but doesn't understand what's going on either. The house manager says "I'm clinical, not legal", so he doesn't fully understand the benefit system. I call Social Security, who says to call the State. The State operator sends me to an extension where there is no voice mail and rings 20 times; I call back and ask the receptionist for help. Someone has got to know something. She takes pity on me and looks up Ben's info; evidently a Mr. Banner closed Ben's case in 2007. What?!?! I call Mr. Banner and leave a message. I call my lawyer, whom I can no longer afford to pay, in a panic. What does this mean?

Finally Mr. Banner calls me back and is nicer than I expected. He says Ben needs an EMB, I ask what that is, but he doesn't really know what it stands for. Social Security has to make the determination as to whether Ben is qualified to get Medicare. He sends the EMB. I call Social Security, and speak to another actual human. She tells me this should all be straightened out soon, but since the SS office is two months behind, Ben's premiums will continue to come out of his benefit check for another two months, and then he will be reimbursed.

I call Harrison House, where Ben resides. I think we have this straightened out. But no one seems to know how this occured in the first place. My lawyer returns my call and says she's glad I was able to get this straightened out. Me, too - if it is.

What do consumers with a mental illness do if they have no mother to chase down the answers with phone call after phone call? If six mentally healthy adults can't figure it out, don't know where to turn, how does the system work for someone whose mental capacity is compromised by more than just a ridiculously complicated system? No wonder homelessness seems like a simpler option.

I'm so grateful Ben has people on his side, including me. I'm so grateful.

grades

Ben texted me today, with the usual message: "Call me when you get this." Often, this causes my anxiety level to rise - what could be wrong now?" . This time, Ben added "I have good news for you." The news? He got an 85 on his first acting assignment! Wow. Wow. I am happy today. So is Ben. Staying in the moment, always a goal. But I'm so glad about any day that brings news like this. Also, listening to a taped "Psych 101" course, learned that over half of the people with schizophrenia are also addicted to drugs...and Ben has been clean 5 1/2 years. He has so much courage. I must never take that for granted.

Amazing conversation

Ben called me last week to tell me that he had delivered his first assigned speech in "Public Speaking 101" class - he chose an autobiographical theme "My Mission in Life", and his is - poetry. According to Ben, he got two pieces of negative feedback from classmates to work on: saying "um" and looking at his notes too much. the rest of the comments were positive!....one was "You're so emotionally expressive." Oh my God, if they only knew. The classmates have no idea Ben has schizophrenia; for him to be emotionally expressive, in this constructive way (i.e. not psychotic) is amazing. Truly amazing.

Oh - and he has started doing push-ups. Cute girls in class, he says. I sent him a text to ask if his muscles were still sore. the reply: "very much so. but I am not giving up!" So far in school, so good. The only way to stay with this: enjoy the moment. How wonderful it is, though.

saved!

Ben is taking his meds again. thank goodness. Dodged another one. I know how much he wants to be "normal" now that he will be taking classes with peers. Will he ever realize that the meds are helping him to be more "normal" than he could ever be without them, because they keep him balanced enough to remain out of the hospital, off the psych ward?

I can't know the answer to that. I'm just glad he's back. It's a good day.

setback

I knew it. Got the call today that Ben refused his meds last night. He said they make him too tired (well, they do) and he wants to try something else. What? After three years staying out of the hospital? Rerun. Trouble is, there is no other medication that works for Ben. Clozaril is the only one that makes his progress even possible. I think school - the idea of success,maybe - is too much stress for him. I've been on this roller coaster before. There's that fine balance, always: expectations low, but not too low. Challenge and promise for Ben, but not too much.

college admission, and new research

News came in Google alerts today: "Schizophrenia may blur the boundary between internal and external realities by overactivating and hyper-connecting a brain system that is involved in self-reflection, and thus causing an exaggerated focus on self, a new MIT and Harvard brain imaging study has found." This is a new research finding, and it could explain a lot about Ben and his difficulty in seeing outside of himself. He tries, though - oh, how he tries to act as if he is interested in others. He hugs us, says he loves us, goes through the motions - and, sometimes, I even see the spark in his eyes that used to be there, like a candle struggling to remain lit. I know that he experiences and expresses love as much as his illness will allow. I also know, for sure, that he feels the love from his family and that it is essential to his recovery.

This afternoon we went to the local community college; Ben wants to sign up for classes again. I am both proud and worried about this. He was so sweet - introduced himself to everyone from the advisors and the bursar to the bookstore security guards and shook hands all around. He seems so happy to be going back to school. And yet -there was more than his usual amount of retreating inside of himself. I caught him muttering to himself a few times, or wearing that cagey expression on his face that says he doesn't quite trust the world. When I looked at him, he snapped immediately out of it.He kept saying "Thanks so much Mom. This is great!" What choice is there but to support this, his plan to take six credits and get good grades? I can only hope. I want to threaten him, to make sure that he knows not to blow it. This nagging, I know on a deeper level, will not help. But it's really hard to keep my mouth shut. Ben had initially decided to take only three credits, which seemed much more manageable to me. But it's his life - especially after I fill out the financial aid forms for him, so he can pay the tuition. I've laid out the money, but am going deeper and deeper in credit card deby trying to supplement his meager income from social security. I am more than broke. Where are the caseworkers to help him with these forms? What would happen to Ben if he had no mother around?

Do I do too much for him? I don't think so. He lives in a group home where his benefits cover room and board with $20 a week in spending money left over. I help out by paying for the dentist, supplementing his fod with a $100 budget each month (he shops and keeps track), and getting him cartons of cigarettes. Beyond that, Ben has to budget his money. It doesn't go very far. He's working on getting a job, with an employment coach. That's in his lap. His life is in his own lap, and I can't let it break my heart that he has so little in the eyes of the world. Ben is almost 27 years old, and his friends from high school passed him by long ago on the standard paths. This is Ben's journey, not mine.

Ben wants so much to be normal. Will his illness let him have this dream? Will the stress of college be too much for him? Will he wind up overwhelmed, and escape with a psychotic episode like last time? Or will he be uplifted by this chance to rise to the occasion? Will he make some new friends at school? Will he ever get to the point where he accepts what has happened to him, so others he meets can accept and understand it as well?

Classes begin next week. Stay in the moment. I'm proud he has come far enough to try this.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal.
contact Claire Gerus, literary representation.

The letter from Ben, my holiday gift in many ways

This month marks over three years since Ben was last hospitalized. I remain grateful for every day that he is with us, enjoying his family's love. It wasn't always like this. There were times he looked at us with such suspicion that I was afraid to be near him; yet, underneath the chest-tightening discomfort there was always my love for this boy/man, my beautiful child. My mantra has become, "It is what it is" - yes, Ben has changed but he is still here, still worth loving, still with potential to keep recovering.

He has no money, except what may remain from his meager social security payments after group home deductions for room and board. The holidays of 2008 are over, and I have in my possession Ben's amazing gift: he wrote me a letter, handwritten in red ink on a piece of loose-leaf paper. Not fancy, but I know how much care went into it - I know this because I can read his handwriting!

This is what Ben wrote: 1/1/09
A list of my favorite things about you
10. You are always interested in a good conversation.
9. You are fun to be with
8. You have an excellent sense of humor.
7. You unconditionally care for me.
6. You respect my privacy.
5. You can guide me towards being a good person without pushing.
4. You have faith in me; that I can do what I set my mind to.
3. You raised me AWESOMELY - I like how, since I didn't grow up with a father, you made sure there were men in my life.
2. Whenever I need help, you're always there.
1. You love me.

I just want you to know that I think you're great, and not only that, but a great Mom too. You do a lot of things for me that you don't have to, and I really appreciate and respect that. I like that we hang out so much (you are a fun movie buddy), and back when I was using (pot) we wouldn't have been. You taught me a sense of family (not just you), which is something I lost when I was using. Thanks for being a good teacher and a great mother.
Happy Hanukah, Ben

Ben is 26 years old. In 2003, he was hospitalized for psychosis five times, in 2005, twice more. His family's love is a huge part of his recovery - and, of course, so is his medication compliance. The story of Ben's breakdown and recovery, and the family's journey to acceptance, is in my memoir Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. E-mail Claire Gerus, at cgerus@comcast.net for more information. Meanwhile, feel free to comment here as I continue to blog Ben's progress.