Channeling Grief and Anger into Advocacy and Acceptance

Mimi Feldman, Mindy Greiling and I have been co-hosting our podcast, Schizophrenia: Three Moms in the Trenches, for almost a year now. Our 32nd episode this week has garnered more YouTube viewings in its first two days than any other so far, and guest Jerri Clark, our " Fourth Mom in the Trenches" for this episode, is the reason.

If you want to know more, please subscribe to the podcast on itunes or wherever you get your podcasts, and/or on YouTube. Our facebook page is @schizophrenia3moms.

Here are some of the notes:

What if: the mental health system would pay more attention, take more steps to help , before tragedy, violence, or crime finally calls attention to symptoms of SMI (serious mental illness)?

What if Darrell Brooks (charged with murder after plowing his mother’s car into a parade in Wisconsin) had been helped, and treated, instead of ignored or imprisoned? His mother, Dawn Woods, wrote a letter to the media. She, too, is a “mom in the trenches”. So is journalist/advocate/mindfulness coach Jerri Clark, our guest for this episode.

What if Jerri’s son Calvin had received treatment, despite his “civil right ”to refuse it - although the refusal itself is a symptom of his illness?

She says: 

“I watched my son delivered into society’s underbelly by design. He spent months homeless, met law enforcement again and again, and tried multiple times to die. These traumas are part of a tragic inventory of the requirements for public assistance when someone has a serious mental illness”

Schizophrenia: Nearly Everyone is a “Long-Hauler”

We Need a Cure

The scariest thing about Covid-19, once you’ve been lucky enough to survive it, is a set of residual symptoms that are still being discovered. I’ve heard everything from “it’s a year later and I still can’t taste my food” to “I still get winded six months later and can barely walk up a flight of stairs” to stories of teeth suddenly and mysteriously falling out months after recovery.

People experiencing symptoms like these are called Covid long-haulers. There are Facebook pages and groups where stories and support are available.

But my son, Ben, and others like him? Schizophrenia long-haulers. This is the brain illness that just keeps on “giving” - challenges, changes, symptoms, side effects, loss.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

My son is doing okay - actually better than expected - on Haldol now. This older antipsychotic frightens me, because side effects like tardive dyskinesia can be irreversible. Also, it is not known to work on the “negative” symptoms of schizophrenia (things the illness takes away from the person, like ability to feel joy). Still -it’s not too bad.

Some good news: (must mention, Ben no longer lives with us, so some of this may be due to the excellent staff at his group home, and a life less dependent upon our family role as landlords etc)

• I can converse with him. Actual give-and-take conversation.

• We have actually watched an entire movie together.

• He eats my cooking again, after years of saying “smells great, I’ll have some tomorrow” (I think he had some sort of belief about my food that prevented him from ever taking a bite in those years).

• He has also gone swimming again, and plays beautifully with his nieces and nephews. In fact, they have a relationship with “Uncle Ben” for the first time in years.

• Haldol is available as an LAI (long-acting injectable) , so Ben isn’t faced with a daily decision as to whether he “needs” antipsychotic meds or not.

But, some of the sadder news:

• I do see some trembling in his hands now. Would he ever be able to work as a waiter again, the job that kept him afloat before Covid closed restaurants?

• He is suspicious of doctors, dentists and any medical testing. This is fairly new. He will not have his teeth cleaned.

• When he isn’t hyper- focused on something I see the eyes darting around the room again, and wonder what he hears and/or sees. He will NOT talk about this, or admit to it.

• He talks once again about unrealistic plans - like opening his own restaurant, becoming a college professor.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

Hope for "Normal" Days Springs Eternal

"Mom, I sometimes I thought I'd never actually have a pleasant day with Ben again. Today was so great!"

Exactly my sentiments, honey.

Families of those with Schizophrenia know:  "normal" days are miraculous. And we treasure. Every. Single. One.  Because, well, we might not get more of the same. no guarantees.

Hope springs…and sustains

Blog followers here know that we've had quite a few, um, adjustments to make re Ben in 2020-21. From full-time employment to hospitalization, to back in group home care...and now, addiction to contend with. It has been a tough year for us, sure --- but so much worse for Ben, especially now that he is "well" enough to realize that his life has gotten so messed up.

He has lost so much.

Stupid Schizophrenia. Thief of lives.  Robber of relationship. Obstacle to useful employment. And so much more.

And yet. There is hope - and moments to treasure again. Grateful, grateful for:

Ben, 25 days clean now. (his addiction is marijuana). One day at a time. He is going to meetings. Fingers crossed. But - wow - it is so different when he isn't stoned.

Two days in a row of family fun - yes, fun! Ben is on Haldol now - not my favorite, as I fear the permanent side effects, but Ben seems happier on it. Letting go of control...as best I can. It's his life. But I must say that things are better than expected, even though Haldol doesn't do much for the "negative symptoms" of his brain illness.

But  - some miracles in the past few days, on family visits:

He went swimming! He used to love it so much as a boy, but for some reason hasn't gone in the pool for five years (I suspect some sort of psychosis belief that kept him away, but I'll never know for sure) -it was always, "Maybe next tiem" - but he went swimming with his young nieces and nephew, and actually played with them. Played!

We did a family trip to the local Aquarium and Ben was actually helpful - the kids adore him, and he was present and involved.  And - during lunch, he turned to his sister (as the kids were doing their "I-haven't-been-to-a-restaurant-since-Covid- and-forgot-how to-behave" routine) and said, "wow, sis, you have your hands full, don't you?" 

Empathy!

If you have a relative with SZ, you know what a miracle this is.

Yeah, he's trembling a bit, and I fear the presence of tardive dyskinesia - a possibly permanent side effect of the med Ben is on.

But all we have is today, and what is, is.

So I'll take the miracle of having made some more good memories with my son. Grateful And always hopeful, and ever watchful.    

Oprah, Harry, and Schizophrenia: The “Me” My Son Still Can’t See

The Me You Can’t See

Have you seen the new docuseries on AppleTV+, “The Me You Can’t See”

First of all, thank you, Oprah and Prince Harry, for joining the ranks of advocates who are becoming more open, honest, transparent about mental health issues, barriers, and some solutions. In this 5-part series, people from celebs (like Lady Gaga to the Prince himself)  to “regular folk” talk about trauma, challenges, heartbreak, and where they are now.

This is brave. This is eye-opening. This will help some folks, diagnosed with mental health issues (or those who know, treat, or love them) to understand and know they aren’t alone.

Thank you.

And yet. 

Does it go far enough? 

I am hoping for a second series, where more illnesses are explored, uncovered. Especially schizophrenia in those who have yet to be aware that they have the illness.

As we’ve covered often in our podcast, Schizophrenia: Three Moms in the Trenches, and in the books and blogs we share, one of the hardest things about schizophrenia is that the first step often can’t be taken: the step of awareness. Anosognosia is the condition that keeps Ben, and countless others like him, shielded from that awareness - and from accepting treatment unless somehow coerced into it (even by love).

Oprah and Harry - next time - and I do hope there will be a next time - please talk to the families of those affected by severe mental illness.

This is the episode I’m waiting to see: the person diagnosed with schizophrenia who has yet to be aware of it. Along with the family members who still love them and feel powerless to help.

We cry, we fiercely guard, we coerce, we lose sleep, we go broke.

We live through grief, live sometimes in fear, we lose our own futures, and  we bounce back a zillion times - all in the name of love, and in the hope that more people - researchers, practitioners, lawmakers, first responders - will learn from our heartbreak and advocacy, and continue to prioritize (and fund) services and science  that will help our loved ones, and our families.

Ben (my son), as you may know from following this blog, recently was released from a nearly-six-month psychiatric hospital stay (almost unheard of in this country) and has slipped from a relatively normal life of work and semi-independence to one of a group home bed and starting from scratch. 

Still, he does not believe that going off his meds had anything to do with the breakdown he experienced in August. He refuses to go back on the meds that he was treated with when he managed to have a clearer semblance of a life. The light is no longer there in his eyes, but he doesn’t feel the difference. 

While he has said he “struggles with symptoms”, he won’t say what those symptoms are. He becomes paranoid and cagey if I ever bring it up. I’ve learned not to.

I’ve learned to appreciate whatever crumbs of my child I can get, and am grateful every day that he is in a place (for now) with a staff trained to help him - even if he refuses much of that help.

According to NAMI,  

When we talk about anosognosia in mental illness, we mean that someone is unaware of their own mental health condition or that they can’t perceive their condition accurately. Anosognosia is a common symptom of certain mental illnesses, perhaps the most difficult to understand for those who have never experienced it.

This is what makes schizophrenia so difficult to treat - the “rights” of patients to refuse the treatment that would help them the most. 

If we applied these “rights” to our parents or other loved ones with dementia or Alzheimer's, they’d be living in an unsafe world. So we don’t allow that to happen.

Well, untreated, so is Ben. And so are the families of people diagnosed with SMI (serious mental illness). 

When you cover schizophrenia by interviewing someone who is in treatment, and aware of their own illness, you don’t tell the whole story.

This is the episode I’m waiting to see: the person diagnosed with schizophrenia who has yet to be aware of it. Along with the family members who still love them and feel powerless to help.

Thanks, though (really, I mean this sincerely), for the brave steps you have taken so far.
Let’s keep going.

Update: Two More Years into Schizophrenia Journey

snow…like the symptoms that can coat Ben’s thoughts

Yesterday I was alone with Ben all day.  Huge snowstorm, hubby away in California, daughter and her husband in their own apartment, driveway covered with a foot of snow.  Ten years ago this would have been a recipe for all sorts of disaster: frustration, loneliness, trepidation. Instead, thanks to treatment which includes medication as well as the other cornerstones of recovery (community, purpose, structure), I was actually glad to have Ben's company.  Here is what happened:

• Ben helped me shovel the driveway - I mean really helped, as in he did 75% of the work.

• Ben cooked us a delicious homemade pizza for dinner.

• We watched an animated movie - well, parts of it - during the required "watchful time" after he takes his meds.

Any parent of someone with schizophrenia will tell you that this is a day to be grateful for - and I am, believe me. No, life isn't perfect, and I still wish for the magic wand (or, more to the point, better research and treatment options), but still I know a good day when we see one.

I'm also thrilled that the book still reaches people, two+ years after publication. Although there have been a few changes in our situation since then (two more relapses, a disastrous foray into "independent living" for Ben resulting in our current living situation where he is at home with us, -with a roommate to boot-, and both a part-time job and more college credits earned), the story of our "journey from chaos to hope" remains relevant- at least according to the readers who have written to me. I am so grateful for the feedback, and the chance to share that continues with each reader (or listener to the audiobook).

Truly honored and grateful...all of a sudden, three new 5-star reviews for Ben Behind his Voices:

1 -"I will probably be listening to the CD over and over again for many years. Gives me comfort and courage to deal with my family member. Thank you so much Randye"
2 -"As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book."
3- "I am so grateful to the author who shares her story to educate and to enlighten those of us who are taking our first steps out of the chaos"

also came across this one, though it was in the form of a comment on another blog, and I can't find the author's page...(ah, Google Alerts)...

"Ben Behind His Voices is surely an inspirational tale a few family’s encounter with schizophrenia. The main target of Randye Kaye’s book is on her son Ben, who struggled for lots of years with psychological well being and compound abuse matters until finally he was as a final point the right way identified with paranoid schizophrenia. Kaye leads her visitors with the family’s very difficult activities using this ailment and their journey toward restoration and acceptance. This book may be a good source for people with schizophrenia and their families. In addition, it serves as the formidable reminder to psychological well being experts to treat men and women influenced with all the ailment with dignity and compassion."

You have truly made my day, readers. THANKS!

Radio Interview: "We All Got Issues" Show

What's going on now? Why doesn't Ben "accept" his illness? What tips help families like ours to cope? Latest interview aired today,  September 23, 2013:

What is life like with a family member who has schizophrenia?  During this episode of the "We All Got Issues" show - schizophrenia is the ISSUE.  Dr. Glenda interviews Randye Kaye, the mother of a son with schizophrenia.  Randye is also the author of "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope".

Here is the show - starting with the song "The Climb" setting the tone.  Dr. Glenda Clare is an empathetic, knowledgeable interviewer. 

New Caregiving Internet Radio with WeAllGotIssues on BlogTalkRadio

Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

Dear Reader:

earlier drafts…

The first draft of Ben Behind His Voices was a full 100 pages longer than the draft that eventually got published.  Once in a while, I plan to post some of the "lost" passages that wound up on the writer's version of the cutting room floor.

This chapter describes a trip that I took with Ben and Ali, right after Ben returned from his period out West which began with great promise (and success at becoming pot-free), morphed into homelessness, and eventually got him back home  for treatment.  At this point in the story, we still didn't know for sure what kind of mental illness Ben had. Even now, we are the observers of symptoms, always watchful for their return, always hopeful they will not, or that they can be explained away by something other than the illness.  

Here is what happened:

"We took a weekend trip to Maine, just the three of us, right after Ben had finished his summer at the day camp. But Ben was acting very strangely again.

He had his backpack with him, always.  Forty pounds of spiral notebooks he just couldn’t leave behind – even if we were going to the beach, or walking near the sea cliffs.

He talked often, but not of ordinary things. His favorite topic that weekend was bragging to us about his “psychic powers.”  Often, he looked at me or Ali and said “I know exactly what you’re thinking. I can read your mind.”

The first few times, we played along.  He was never right, but would say that we were simply lying, that he must know more about what is in our minds than we did.

The three of us went to see a production of Joseph and the Amazing Technicolor Dreamcoat at the Ogunquit playhouse.  Ben, however, often seemed distracted.  We caught him “watching” the show with his eyes completely closed.  He looked as if he were trying to go into a trance.

“What are you doing?” Ali asked him.

“I just enjoy the music better this way sometimes,” he said.

It was weird. It looked weird and it seemed weird. He seemed stoned – but there was no other evidence of that at all.

How many more days before we can go home?

And it was only a weekend vacation.

Ben spent the entire five-hour ride home talking. And talking. It was another non-stop monologue, mostly about his ideas and concepts. It seemed as if he simply could not turn off his brain.

We made it home, finally, and retreated to out quiet and separate corners.  I was worried. Does Ben need to increase his dosage of his medication?

Have they suddenly stopped working?"

Schizophrenia and Social Security Benefits

Where to Start?

When we began the process for Ben to qualify for Social Security Disability benefits, I was overwhelmed by confusion, options, paperwork....and had very little idea how to begin, much less proceed. I welcome a guest blogger today, Ram Meyyappan, who has written this about Social Security Disability Help. If you have questions, you can contact him at ram@ssd-help.org 

Thanks!

Here is his article:

Applying for Social Security Disability Benefits with Schizophrenia

The Social Security Administration (SSA) recognizes Schizophrenia as a condition that qualifies for monthly disability payments. In order to be found eligible for either one of the disability programs you must show that despite following prescribed treatments your disease still prevents you from working.

Disability Programs

The SSA administers two different disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.Basic eligibility for either program requires:

• you suffer from a debilitating and formally diagnosed medical condition that has been present for at least 12 months, or which is expected to last at least that long, or which is terminal.

AND

• your condition prevents you from maintaining gainful employment in any field for which you would otherwise be qualified.

In order to qualify for SSDI, you must have a strong work history during which you paid FICA taxes. SSI does not take your work history into account. It is a needs-based program for people with limited income and assets. For more specific information on the requirements for SSI and SSDI, visit: http://www.ssa.gov/disability/

Meeting the Disability Listing for Schizophrenia

After meeting the basic eligibility criteria for SSD benefits, your application with the SSA will be reviewed to see if it meets the listing for Schizophrenia in the SSA’s manual of condition that qualify known as the Blue Book. This listing, which appears in section 12.03 of the Blue Book, requires you suffer from one of more the following issues on a consistent or intermittent basis:

• isolationistic behaviors that make you socially and emotionally withdraw

• illogical thinking

• incoherent speech

• inappropriate moods

• hallucinations

• delusions

• catatonia

• overly disorganized behavior

In addition to your application and accompanying medical documentation proving the previously mentioned signs and symptoms, your medical records and other supporting documentation must also show you experience serve limitations, including at least two of the following:

• the ability to participate or complete normal daily activities of living

• the ability to focus on and complete tasks, including normal job duties and tasks in your personal life

• the ability to maintain relationships or otherwise function in social situations

• to persist in life without experiencing lengthy and recurrent “episodes of decompensation”, which are periods during which your symptoms get substantially more prominent and pervasive

 For more information on applying with Schizophrenia, visit: http://www.disability-benefits-help.org/disabling-conditions/schizophrenia-and-social-security-disability

Getting Benefits without Meeting the Listing

Even if you are unable to qualify under either of the listings detailed above, you may still be able to receive disability benefits with Schizophrenia. To do so, you must show through your medical records and other documentation that you qualify for a medical vocational allowance, which simply means that while you do not meet a listed condition, your symptoms of Schizophrenia are still so severe that they prevent you from working.Residual Functional Capacity (RFC) report forms completed by you and by your doctor are the backbone of a medical vocational allowance. RFC reports on mental functioning and physical functioning may be required, dependent upon the symptoms and limitations you experience.

Applying for Benefits and What to Expect

Disability benefit applications can be completed online with the SSA’s website (http://www.ssa.gov/applyfordisability/) or in person at your local SSA office. Either way, it is important that you collect as many of your medical records and other documentation as possible before beginning your application. All of this documentation should be submitted at the same time, or just after, you turn in your completed application forms.

After submitting your application, you should expect to wait at least three months before receiving a decision. Don’t be discouraged if your application is denied. Almost 60% of applications are initially denied, There is an extensive appeals process during which you may still be approved for benefits.

Article by Ram Meyyappan, http://www.disability-benefits-help.org/blog

Social Security Disability Help 

January First Review: Yes, Childhood Schizophrenia is Real

January First: A Child's Descent into Madness and Her Father's Struggle to Save Her
by Michael Schofield

My rating: 5 of 5 stars

It's such a mirror reflection of the emotions I went through as the mother of a son with schizophrenia - only my child was in his mid-teens when symptoms began. Jani was only - well, in hindsight for this loving, confused family, she was a newborn when her "differences" became apparent.

But, like our family, the Schofields thought, and hoped, that love - and disciplined, creative parenting - might just "fix" the problem. Not the case if your child has schizophrenia, trust me - and not easy to accept for either parent.

This is a highly readable, honest, raw memoir of the grasping at the straws of hope that we go through to find our how we can help our children. And, eventually, that we can't do it alone. Then, we have to find the right people to fill out the team. This, as you'll read, is a long journey.

Many had thought "childhood-onset schizophrenia" was not a real thing. It is. Oh, it is. And this family, like ours, has worked tirelessly to get through the maze, guided by love and hope.

Bravo!
Randye Kaye, author "Ben Behind His Voices"View all my reviews

More than just Meds: Recovery Reminders

It can be so easy to get used to success, then to keep wishing for that higher bar.  I've read that it's a human to forget extreme physical pain - otherwise why choose another bout with labor and childbirth? - but what about the emotional pain attached to crisis periods in mental illness?

All it takes is one gentle reminder and the feeling of stress comes running back in.

We've had, now, almost five months of stability with Ben, ever since the family stepped in to "help" his official care team.  He is blossoming once again after a painful summer reminder that without the right medical treatment as the cornerstone of recovery, the house built upon that foundation can crumble like a house of cards.

Watch for Effects of Change

These days, it's almost easy to forget that Ben has schizophrenia. He just went to his first-ever employee Holiday party, which means he is valuable enough to his company to have lasted this long, even into the off-season. His job has provided so much for him: purpose, community, focus, and a paycheck.  He has something to talk about when someone asks, "so, what do you do?" He loves his job and feels like a person again.

His two college courses, too, have been a source of purpose, structure, and pride. What I wouldn't have given, over a decade ago as his illness was developing, to have heard this from one of his teachers:

"Ben, you did your work with dedication and care for details, you contributed to the class with intelligent questions, comments, and a great sense of humor... You are an A+ student, and your final grade for this class is a well deserved A. It was a true pleasure having you on my class. I hope I'll have the fortune of having students like yourself in my classes in the future."

Wow - yes, I am serious. Those are the comments from one of his professors!

That almost makes us forget that, five months ago, Ben was wandering the halls of a psych unit, talking to the voices he never admits to hearing. The sudden lack of treatment services he had experienced during the summer of 2011 had led to a lapse in his intake of his crucial meds, which in turn led to a refusal to return to taking them at all.

We almost, I must remember, lost him again. But thankfully he returned to what his psychiatrist says is  his "former baseline."  How? Meds in place, the other pieces of recovery could be rebuilt:

Purpose, Structure, and Community(family, friends, co-workers, etc.)

Love helps too. But it didn't seem to stick so well while Ben was in crisis.  Now, Ben is healing - and I see signs of emotional growth I have not seen in years. He cares about school. He is thrilled that, at last, he can afford to buy presents for the family with his own money.

Still,  recovery (or stabilization, maybe a more accurate term) can be fragile. There is so much more to it than the medication cornerstone. This week, Ben seems just a little bit "off" at times.  Is it the meds? Always the first thing we wonder. But I suspect his subtle agitation and occasional lack of focus right now is due more to the thing that affects us all, some more strongly than others:

Change.

In the past few weeks, Ben's school semester has ended, his work hours shifted (holiday closings), and he has been experiencing the excitement of giving/getting holiday gifts. Even as a little boy, Ben was always a little "off" as holidays and birthdays approached. Like many of us, the anticipation and uncertainty was almost overwhelming, disrupting the predictability of life. That's one reason we like this time of year, and also a reason many have an opposite reaction as extreme as depression.

It's good to remember that schizophrenia recovery is not just about meds. Ben was anxious around the holidays as a child, so why should his basic nature change now?  It isn't always about the meds - it can be about life. Purpose, structure, community: these things help shape us all.

So we will keep our eyes open, naturally. But also our minds. When life settles into routine again, I think Ben will too.  That has been his pattern since way before his illness entered our lives.

Happy holidays to all!

Diagnosis, Schizophrenia: What Came Next?

Interview on Conn Jackson' show, Get Connected-- he on windy Manhattan (California) Beach, me in a nice warm studio in Manhattan (Big Apple). He asked some great questions, and allowed me to highlight the importance of therapeutic alliance, NAMI, early detection, reduction of stigma, support and education for families, and the importance of love and hope.

Thanks, Conn! Here's what he had to say about the interview on YouTube:

"Watch as Randye Kaye, author, tells us about her son's struggle with schizophrenia and how she helped him though it. Why is Randye's secret advice? Watch and find out!"

Listen to a Scene: Ben Behind His Voices

One week before Ben's first hospitalization in 2003, I stopped by his apartment because he wasn't answering my calls. This is what I found, from the chapter "Not Sick Enough." Ben's silent treatment, and his living conditions, were almost grounds for the Emergency Room- but not quite. Not yet.

One Small Glimmer of Hope: We'll Take It

Today: a "discharge meeting" with City Hospital's psychiatric team, and the case managers for Ben who come in with an alleged treatment plan. The hospital's Chief of Psychiatry informs me that Ben's self-talk is now so strong that he shouts back at his voices at times, and it has taken three tries for a group leader to get Ben back to reality. He is decompensating. The meds he is willing to take are not working. We knew that.

Ben's new case manager, who had supervised (ha!) the transition from supported housing to independent apartment a month ago, does not look me in the eye. Not once.

Thankfully, the Doctor rejects the caseworkers' new treatment plan for now - because Ben is simply not ready for it. I breathe a sigh of relief, and together we all work (well, mostly the hospital staff and me) to see what we can do now, while Ben is still in the hospital, to adjust his meds. This is not easy due to the confines of state law, but it does help that I am conservator. What also will help is the way we, as a united team, choose to phrase things to Ben. I remind them that too many options is never a good thing. The simpler the better.

We go to Ben's room. He is asleep, and right upon awaking he seems like his "good self" - sweet, happy to see me, coherent. The meeting itself goes well, mostly because this Chief of Psychiatry has beautifully executed the conversation with the simplicity we'd agreed upon, and with utmost respect for Ben. Remarkably, presented with only two possible choices, Ben agrees to at least add some Clozaril to the meds he is currently taking. He feels validated, and a part of the plan, and yet we didn't give him enough options to confuse the issue.

It's a step. I'll take it. It's the best news I've heard in weeks. I can breathe again - for today.

Schizophrenia and Respect: Still Proud of my Son?

The last line of my book is this (no spoiler alert necessary, don't worry):

I am proud to be his mother.

The question you may want to ask, now that Ben has had his first relapse since 2005: Are you still proud of him?

My answer, of course, is a resounding yes.

Hide and Seek

It's harder to get in touch with the glow in my heart right now, I admit. That's because there's such a big knot in my chest when I think about the fact that Ben is currently starring in a rerun of his last relapse in 2005. Back in the same hospital, looking at me with suspicion instead of warmth, stubbornly insisting that his success of the past six years had nothing to do with Clozaril. He doesn't like the way it makes him feel, he says. He is willing to try something else - that, at least, in an improvement over last time - but I wish he'd just skip all the trials that we know from experience don't work, and just go back on the meds that do.

Expectation is the enemy. Time to regroup. He has come back to us before, and he will again, I tell myself. It's just a matter of when and how.At the Connecticut NAMI annual meeting last night (what good timing, to reconnect with the NAMI community), I was reminded that the road to recovery is full of such detours. So I adjust, and advocate, and wait.

Yesterday a letter came in the mail for Ben. Now the master of his privacy, I open it and discover it is yet another letter of congratulations from his college. He has made the Dean's list once again. Was it really only one month ago that he was handling final projects, a new job, four recovery meetings per week, his chores at his group home, and packing to move to the new apartment that was the biggest agency mistake ever?

Yes. It was. And that person is still in there, still my Ben - just hidden behind the voices once again. Temporarily, I hope and pray. We've been here before, and the clouds have parted, eventually, each time.

As an astrological psychic (don't ask) once reminded me, "It's not your journey, it's his." I will do everything in my power to get him back on the road once again, but he must somehow point his own feel in the right direction.

The letter closes with this, from the Dean:"
I send you best wishes for the future, and my hopes that your recent success will be followed by a lifetime of equally satisfying accomplishments."
Yes, please. Please.

Families and Mental Illness: Listen, please.

one constructive thing...

I woke up early this morning, grateful to have slept at all. It's finally Monday, and the main players on Ben's so-called recovery team are back at work. Maybe - just maybe - I can do something today that will help Ben, repair some small part of the damage that has been done by the recent, blinders-on, money-saving (ha!) way his recent transfer from group living was handled.

The sleepless night came by surprise. After a Fathers' Day filled with blessed distraction, I found myself with physical exhaustion but a wide-awake brain when my head finally hit the pillow. The body knows. Sleep would not come. Too many thoughts.

Today I awake in the family room, where Ben usually sleeps when he spends the night with us. The pillow and blanket are the ones he uses, and they smell of him even though he hasn't stayed with us much since moving into his new apartment. This scent, I think, is what finally lulled me into the three hours of sleep that came at last.

Ben's laundry is clean and neatly folded in the corner of the room. That, at least, was something I could do for him yesterday when the treatment world was asleep. In these three days since his relapse I've revisited the earlier stages of emotional recovery for families (introduced in Class 1 of NAMI's Family-to-Family class), as we all do when crisis suddenly rears its ugly head. Crisis, hoping-against-hope, shock, fear, guilt, sadness, anger - and now I must return to acceptance and advocacy in order to make the calls, have the meetings, figure out a way to fix this if I can. Look out. I'm about to pick up the phone.

Most helpful during last night's insomnia? I reread the latest issue of the NAMI Advocate, reread the insightful comments on this blog and my companion blog for healthyplace.com, and then wrote an entry on the latter, reviewing the four cornerstones for mental illness recovery as I see them: Medical Treatment, Community, Purpose and Structure. Ben had all that (not perfect, but still present) a month ago; now all four have been shaken to the core by the sloppy, extreme and trigger-happy transition that shook his familiar world.

Writing these posts has a calming effect, as though by taking the ideas out of my head and piecing them together on paper or screen frees me from their hold.

It suddenly comes to me that Ben does exactly the same thing when he writes - in one of his many spiral notebooks, on scraps of paper, on his hand. Maybe, for a moment, it gets the voices out of his head and into another place where he can begin to make sense of them, have some control over them. 

We are not so different, after all.

Thanks for reading this blog, and helping me feel like our story might somehow be of help.

No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI's Family-to-Family Course

Where truth, support, and hope began: NAMI's Family-to-Family Course

Now:

Ben made the Dean's List again! The letter from our local community college confirms his status and adds, "It is a a very worthwhile accomplishment to have become one of our best students." For the first time in over a decade, Ben actually cares about his grades;  there was a time he considered report cards a government plot to control him.  Ten years ago, he was a high school dropout, refusing to discuss his future plans, wandering through our town streets because he "didn't like the stupid rules at home."  Sometimes, then, he slept in the park.  My son, homeless and hopeless. His family: confused, devastated, always at our wits' end. 

Recovery takes time - and a lot more. So as we take this journey, I continue to teach (and train others to teach) a course for NAMI (National Alliance on Mental Illness) called Family-to-Family.  This program - one of many offered by NAMI -saved our family by teaching me about mental illness and giving me the skills to deal with our new reality.

It was there that I learned the devastating truth that was necessary for the start of recovery: Ben truly did have a serious, and severe, mental illness. He was not "stubborn", or "going through a tough adolesence" - he was ill, and it wasn't his fault.  What did that mean for us? For him? By opening my eyes to the facts, this course opened my mind to solutions.

I am forever grateful to Dr. Joyce Burland, who created the 12-week class, and to everyone at NAMI who continue to help bring it to families like ours.  For free. Still, so many families don't even know what it is.  I urge you to find out.  Visit http://www.nami.org/ and find a wealth of free information, and a link to your local affiliate.  Click on "education" and there you are.

Find NAMI. It's something you can do for yourself - -RK

Excerpt from Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. December2003 (for info on publication, contact Claire Gerus, cgerus@comcast.net, literary representation)

In my years in NAMI, I’ve met some unforgettable people. While Family-to-Family is strictly for relatives of people with mental illnesses, the support groups also include the “consumers” (the current term for the ones who have been diagnosed with the illness) themselves, those who are struggling with their own recovery and ready to accept and talk about it. There are support groups strictly for consumers too, but it’s amazing to sit in a room where consumers and family members share their experiences with each other.

I’ve met people with such courage, such insight, such humor along with so many losses. I’m constantly awed by their stories, with the things they’ve lived through and the actions they’ve taken. With heart. With determination. With unending, powerful love.

I’ve met families with riches and families on welfare. Families of many colors, religions, levels of education. I’ve met adult children who grew up having to chase their mother down the street while she was in a manic phase; wives who had to play Santa Claus when their ill husbands were suddenly hospitalized on Christmas Eve; brothers who have lost the sibling who once taught them to ride a bike; sisters who get twenty confused phone calls a day from the big sister who used to help them with their homework and is now living on the street but refusing help.

I’ve met people who spent their life savings, mortgaged their homes, drained their retirement accounts in order to try a new treatment for their relative, or afford a few months in a private facility that either seemed promising or was simply the only alternative for post-hospital care. I’ve met parents whose children were missing for weeks, sometimes years; husbands who had to chase down their wives, around the world or across the country, after a disappearance sparked by mania. I’ve met people who have lost their loved ones to suicide.

Many of the families I meet have other children – healthy children, “normal” children. Luckier children. Mental illness, contrary to embarrassingly recent thought, is not the fault of the parent. It is a biological illness of the brain. That fact - that proven, medical fact - is a major hurdle for many family members to accept, for it means two contrasting things: one - that you didn’t do anything wrong. The illness is not your fault; two – that your relative really, truly is ill. You cannot “fix” this any more than you could “cause” it. You have so much less control than you wish you had.

With that said, though, families find that there is still much that they can do to help. There is empathy, understanding, advocacy. There are limits to set, programs to learn about, ideas to set in motion. That help may or may not be accepted by your loved one, but in the meantime, you can – you must -help yourself. There is grief – so much grief, so much loss. But there is also hope. You must live your life in between the storms.

Posted by Randye Kaye at 7:14 PM

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Labels: F2F, Family-to-Family, mental health, mental illness, NAMI, parenting, Randye Kaye, schizophrenia, stigma

3 comments:

glory said...

Randye, your blog is wonderful. It'll be a lifeline to families challenged by schizophrenia. 

February 22, 2010 8:32 AM

Randye Kaye said...

thank you! that is the hope - 

February 22, 2010 3:01 PM

Logicmaven said...

Trying to understand it all. Things were looking up. My boy seemed to be doing much better -- much clearer, much more in focus. I started to wonder if it was all in MY head; after all, he hasn't had a formal diagnosis in almost ten years. It seemed like things were moving toward "normal." We spent some wonderful days together laughing, visiting the MoMA, remembering how alike we are and forgetting how different. I tried to gently push him toward mental health care -- he refused.Then he took off again. He's back in the city, "staying with friends." He calls me at night to tell me he's cold, to complain about not being able to get seen at the methadone clinic, to tell me he's hungry but he's not coming home.I don't know how I would survive without the support of friends.Thanks, Randye, for being there. Thanks for telling me about NAMI. Your words help so much.

March 2, 2010 11:19 AM

No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI's Family-to-Family Course

Why the title "Ben Behind His Voices""? Excerpt from Introduction

why? because Ben is still in there, struggling to connect through the chaos of senses gone haywire, or sometimes dulled by the meds that keep him out of the hospital, in his brain.

Introduction - 2010

My son Ben knows the lyrics to every song I’ve never really noticed on the radio. He’s the one who teaches to me to appreciate the poetry in songs by Led Zeppelin, Pink Floyd, and Eminem. He’s my favorite companion for performances of Shakespeare in the Park, because just at the point when I’m starting to think why don’t they just speak English already?, he invariably whispers something like, “Wasn’t Shakespeare a genius, Mom? Listen to the music in the way he wrote those lines.” Shame on me.

Ben loves nature, children, fantasy video games, helping others, the Indianapolis Colts, Thanksgiving with the family, and vegetarian Thai food. He made the Dean’s List at college last semester. He kills at Scrabble. He has offered to counsel my best friend’s nephew, who is still lost in the world of drug addiction.

Ben is 27 years old. And – oh, yes – he has paranoid schizophrenia.

Ben is not “supposed to” care about others - that's one of the symptoms of schizophrenia. But he does. He is full of love, and we're grateful for his presence. Our family has learned to live in the moment; there are, thankfully, many moments to treasure these days. But it wasn’t always like this, and we know, all too well, that tomorrow could bring more change. Still, we have found hope and love that we once thought might be lost forever.

When Ben was hospitalized five times in 2003 – the height of his crisis period - for symptoms of this illness, no one in my life really knew how to react. No one showed up with casseroles at our door– especially not by the third or fourth hospitalization. People don’t really know what to do, how to support the patient and the family. Unlike a physical illness like a broken leg, there’s no timetable for recovery from something like schizophrenia. There’s no sure moment of getting better. There is no cure; there is only management. As is also true with cancer, there’s always a chance for recurrence after remission. But unlike most cancers, the patient’s very soul seems to be affected by mental illness. The organ it affects is the brain, and that’s the window to our personality, perhaps to our soul. People are frightened of mental illness; they’re uncomfortable visiting someone on the psych floor. The family feels isolated, stigmatized, and often very alone. But there is hope. Ben is in recovery. He is not “cured”, but he can be kept in careful balance. He is part of our family. He is worth knowing. He deserves to be understood and accepted, just like anyone with a more visible disabilty.

Every morning and evening, Ben takes medication to keep his brain in balance. He doesn’t agree that these meds do anything to help him, even though if he stops taking them he winds up back in the hospital within days. All he knows is that they make him feel mentally cloudy and physically exhausted. Ben tells me that he feels like a blanket has been thrown over his mind when he’s on his medication; he loves the initial feeling of clarity and energy that comes if he stops taking it. I know that this euphoria lasts only a day or so, but by the time Ben’s brain has raced past that first phase, he’s too symptomatic to realize that anything’s wrong. He generally just thinks that “people are treating him differently” for some reason. Sure we are. When Ben shifts focus to his inner world, and we try like hell to bring him back to us.

Without the medication that restores the chemical balance in Ben’s brain, he has to fight to remain connected to what’s happening around him instead of within him – and the strain of that effort is heartbreakingly apparent. Ben wants, with all his heart, to prove that he doesn’t need the medication that we know has brought him back to us – at least halfway back.

new excerpt: from Part One: Before the Illness

My Baby Boy

April 30, 1982

It’s hard for me not to see Ben’s life in two parts: before the illness - when everything seemed manageable with normal parenting skills – and afterwards, when all hell broke loose. Hopefully, now, he’s in a third phase: recovery. I remain so grateful that Ben’s doing well. But I am still, on occasion, haunted by the child he was, the child we lost. That child is still inside of Ben, peeking through the cloudy veil of schizophrenia and the medications that keep it under control. Like all parents, I miss the baby I once had. But I also mourn the man he might have become, if not for the illness that got in his way.

My baby. Benjamin was born on April 30th, 1982, nine days late, after a natural labor and delivery. No drugs. See, even now I remind myself, this is not my fault. I ‘d done everything right during the pregnancy, I swear - unless you count the Pepto-Bismol during the first week of what I’d thought was a stomach virus but turned out to be morning sickness. I’d even gotten my husband, William, to change the cat litter.

Although - maybe I had chosen the wrong man to marry. Maybe his genes were somehow flawed and I should have been able to see the signs. I’ll never know the answer to that, but it’s the question I am asked most often: “Does schizophrenia run in the family?” I’m not even sure why it matters, except that the questioner wants some kind of assurance that it can’t happen to their child. ......

.....(So) before William and I marked our first anniversary, we celebrated the birth of our gorgeous baby boy. There were no wails of outrage as this child was brought into the light from my womb; there was only a deep breath of life followed by fascination. His face was perfect, and somehow wise. He was beautiful, so beautiful. From his very first moment in the world outside my womb Benjamin was alert and assessing the environment through those intent brown eyes that later would so resemble my own. In the hospital room, I stared at this new life, living the first page of his history, and imagined what else would be written there.

I promised my sleeping little baby that I would always do my best, always stick by him.

Little did I know how fully, and for how long, those intentions would be tested. Never once, with no history of it in my family, did I expect a mental illness would steal his life from him later on. You imagine cuts and scrapes, broken arms, broken hearts, even car accidents or kidnapping – but never schizophrenia.
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SIDEBAR:
Is schizophrenia inherited?

Like many other medical illnesses such as cancer or diabetes, schizophrenia seems to be caused by a combination of problems including genetic vulnerability and environmental factors that occur during a person's development. Recent research has identified certain genes that appear to increase risk for schizophrenia. Like cancer and diabetes, the genes only increase the chances of becoming ill; they alone do not cause the illness.

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To learn more about this manuscript, contact randye@randyekaye.com