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.

"Silver Linings Playbook" and Meds: Why the Secrecy?

At the end of the movie Silver Linings Playbook, when main character Pat Peoples is about to embark on the next, happier, more stable part of his life, I think he says something to his ex-wife about doing much better because he is focused, determined, physically fit - and (shhh!)taking his meds.

I think he says this because it's muttered almost under his breath - like it's a big secret we don't need the audience to know. As if he could do it all by himself without those nasty "drugs".

Really? Most of the one-out-of-four families who deal with mental illness will say that, while all those other elements of recovery are also essential (love, purpose, helping others, exercise, structure) , they could be entirely useless without the medications that stabilize the brain. Albeit not perfectly.

Does Pat Peoples Take Meds in Silver Linings Playbook ?

One quote from the book:

"...a woman who knows all my secrets, a woman who knows just how messed up my mind is, how many pills I'm on, and yet she allows me to hold her anyway",

suggests that Pat did, after initial resistance (which we see in the film), take his medications (which we might see in the film, but it's left unclear).

How nice it would be if people like my son Ben, diagnosed with schizophrenia, could see a movie hero who learns to accept that his meds do help, openly swallow them in the movie, and acknowledge that they have been part of his recovery.

Thank You, Pharma Companies and Reps

In the past year, I've had the honor several times of addressing pharmaceutical reps to tell them how much their work matters. These reps have, well, a bum rap. The face stigma of their own, portrayed as money-hungry, aggressive, pill-pushers. I speak to them in my keynote asauthor and Mom, tell our story, and remind them that that without new developments in medication - which it is their job to make available - my son might not be where he is in life.

One comment from a recent attendee:

"Your story inspired our entire sales force to continue working hard to 'bring value to life' for patients and caregivers alike.  I can’t begin to tell you how moved other members of the company from other sales divisions were to hear your story—it really helped put a face on schizophrenia and the many challenges and hurdles faced by all concerned."

So - if you research, develop, work for access, make available, or otherwise help to bring new meds to people like my son - thank you. Keep at it, because many of these meds could certainly be improved. But you give our family hope.

Even if my son still feels he needs to hide the fact that medication is part of his recovery. Even if he wants to think all the success is due to his own willpower and drive.

Recovery Needs Many Things - Internal and External

I am a big fan of drive, exercise, community, purpose, and a positive attitude. But, where mental illness is concerned, those qualities are usually not enough - not without meds, especially in people as young as my son.

Maybe, someday, there will be a popular movie that, loud and proud, gives medical treatment some credit too.

(Still - I loved the movie.)

Schizophrenia Recreated in a Computer

How does schizophrenia develop in the brain?  What happens? Dr. Ralph Hoffman creates "hyperlearning" in computers, which then recalled stories as a schizophrenic patient might.

Hear the interview here.

"Reporting in the journal Biological Psychiatry, researchers write of modeling schizophrenia in a computerized simulation of the brain's connections, called a "neural network." Yale psychiatrist Dr. Ralph Hoffman, an author on the paper, discusses what his team has learned from the model."

Why? To learn.  If we'd never gone into space we'd never have the global networks we enjoy now.  To my mind - and for the 1 in every 100 people who are diagnosed with schizophrenia - the more we learn, the better.

Research is vital to understanding - and to eventually finding a cure.  We'll get every dollar spent on research back tenfold if those with mental illness can truly recover.

Neuroscience Symposium at Yale

For a living, I make people laugh (radio broadcaster, VO talent, emcee, stage actress).  My hobby? Neuroscience.  It actually comes in quite handy, and not just in understanding my son's schizophrenia.

From the "Neuroscience 2010" symposium at Yale yesterday: Kay Jamison Redfield (An Unquiet Mind), award recipient, reminding us that love makes a huge difference in recovery. Re her late husband: "My rage was no match for his wit." How often it helps to keep a sense of humor, even in the middle of a loved one's crisis. Sometimes it's all you can do to locate your own sanity.

Big topic: early detection, possible prevention. According to John Krystal, MD, Chairman of Psychiatry at Yale School of Med, "brain changes associated with psychiatric illness can be prevented and reversed."  Another presenter warns us that "mental illness is like paraplegia of the brain - we can't change that it happened, but how we deal with it can make all the difference in quality of life." Hope, realism, acceptance - all echoed in one morning.

But, clearly, if full psychosis can be prevented by alert professionals and family members, the outlook is better.  More understanding, less judgment, more hope.  Keep funding research, please!

Ben Behind His Voices - further out of the shadows

Claire Gerus, my wonderful literary agent can be contacted at cgerus@comcast.net. The original titles of this memoir represent some of the changes we've gone through as a family since its original draft as To Hell and Half way Back, and first revision as No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance. Present title: Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal .

And, indeed, the "new normal" remains in progress - but there is happy news.  One of the reasons I wrote this book is to provide a vision of hope for families devastated by mental illness.  Many of the chapters spell out, all too realistically, the years of confusion and chaos, with sidebars of information I wish I'd had before Ben's diagnosis.  And we all know that recovery is hardly a straight, predictable road. But - recovery is possible, with a combination of realistic expectations and persistent watchfulness and hope.

Before the symptoms emerged in  mid-adolescence, one of Ben's most endearing qualities was his way with children - warm, insightful, loving. He was a sought-after babysitter and remarkable tutor.

We lost all that under the illness for many years.  If you have gone through this in your family, I don't have to explain this any further.  But - Ben is still there, indeed, behind his voices, and he is emerging from the shadows more and more, with each day he stays on his meds.  This week I got to observe him teaching an art project to pre-schoolers (a homework assignment for a college class he's taking). I saw, for the first time in years, reminders of the patience, creativity and understanding he used to have with kids.

It is possible.  It's not perfect, but it's possible.