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.
Tuesday, January 27, 2009
Wednesday, January 21, 2009
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.
Tuesday, January 20, 2009
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.
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.
Thursday, January 15, 2009
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.
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.
Subscribe to:
Posts (Atom)