We’re All Winners

Unlike the disability rights crowd I’m content to use the word “courageous” to describe what it’s like waking up every day and having to live with an illness whether chronic or in remission.

As a fifty-three-year old woman, I don’t think anything or anyone is normal in this world. One day I simply couldn’t get out of bed again. So I stayed home.

Yes, I tell you: give me some kind of prize for having had a breakdown. Call me courageous even though I recovered and I’m in remission. No one should have to deal with an illness every day of their lives regardless of whether or not they still have symptoms.

First of all, folks, it’s courageous to practice wellness in a climate where others want the right to choose to be ill. Only the ill times were no joke for me.

My belief is that you can find your kind of wellness within your illness even if your condition is more severe.

I’m not going to minimize or discount the pain people are in. Nor do I want others to gloss over the pain I’m in. Though I report from the land of Well and Plenty I didn’t always have this fertile tilled soil. It’s too darn hard to get where I’ve gotten that you bet I expect others to have compassion for all of us.

We cannot live our lives in mortal fear of emotionally clueless people who have no compassion for us and our trials. That’s why I say: give us some kind of Nobel Prize just for waking up and being able to go out the door in the morning.

Whether we’re still in pain or doing better isn’t the point. The exclamation point is that each day we’re trying our best to survive and thrive.

We’re winners just because we get up in the morning.

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Dancing in the Rain

Fashion ultimately can’t cure an actual disease–if it could Kate Spade would still be alive.

When life isn’t going your way, when a setback happens or it takes longer to get what you want: I say do what makes you happy so that you can feel good.

The solution to experiencing a setback might just be to shift your focus and do something else. Or to change the method you employ for achieving your original goal.

It’s ironic–and sad more than anything–that Kate Spade could design pocketbooks that put a spring in women’s steps when we carried them. Yet she didn’t feel the same joy in her own life.

Was she 55?

I’m a 53-year old woman who hasn’t gotten what she wanted: a boyfriend and a book contract.

The quote gets it right about learning how to dance in the rain instead of simply waiting for the storm to pass.

I recommend that all readers–men as well as women–do what gives you joy.

Readers: dressing in style has been my way to dance in the rain.

This is what I’m saying: that at 53, at even just 22, at whatever age you are:

I submit the goal is to feel good about yourself and your life.

For one person, singing in a choir might make their heart beat. For another, running a 5K marathon might keep them smiling.

The pursuit of happiness is not a frivolous endeavor.

I regret there’s a backlash against the positive psychology movement that Martin Seligman started years ago.

If you ask me it’s imperative that we find out what makes us happy and go do that.

The beauty is that the older you get you can discover new gifts and passions that will bring you joy.

It’s not ever too late to make a change for the better.

The rain can end at some point. For some of us it might continue. That’s when having a fallback option makes sense.

Years ago I went back to school to get a Masters degree. That was my Plan B.

Choosing an alternative path to go down isn’t settling for less. It’s being realistic when it turns out the umbrella you were holding up has broken.

There is always going to be rain. While most of us prefer the sun the rain might serve a purpose too.

Learning how to dance in the rain sure beats being afraid of the thunder.

Mother’s Day Message

This is a Mother’s Day greeting to every women reading this blog entry. It’s thought that all women are mothers in some way taking care of other people.

My mother turned 80 this year. I’m 53 now. In 1987 when I was 22 I was diagnosed with schizophrenia. My mother had driven me to the hospital within 24 hours of my breakdown.

This greeting goes out to every mother whose adult children and or the mental health staff have blamed them for what happened to their kids.

Ever since I decided to become a mental health Advocate in 2002 – over 15 years so far – I’ve credited my mother’s one courageous act to drive me to the hospital as the number-one reason I recovered. Recovered with an ed at the end of recover because of my mother.

I will go to my grave championing getting the right treatment right away when a person first experiences mental or emotional distress.

My mother isn’t well. For 40 years she smoked two packs a day. Though she quit when she was 61 it was too late to prevent smoking-related disability. She has emphysema because of her addiction. Today she sleeps and travels everywhere with an oxygen tank.

Though I’m the one diagnosed with schizophrenia I’ve become my mother’s caregiver. Unlike how a lot of mothers are the caregivers for their adult kids with schizophrenia.

No one at mental health organizations like NAMI talk about this reverse dynamic: how adult children are becoming caregivers for their parents. Hell NAMI isn’t even addressing the mental health needs of senior citizens living with mental health issues.

What will happen after our parents are gone and we have no one to care for us?

I’m fortunate that I’ve recovered and have always been independent. I will continue to be fit and active because of my own efforts.

Yet what will happen to people diagnosed with schizophrenia who can’t care for themselves after their parents are gone?

What will happen to our parents if we can’t care for them when we’re older?

Nobody’s talking about this. Not NAMI. Not anyone else.

Over five years ago I first wrote about geriatric psychiatry when I was the Health Guide at the HealthCentral schizophrenia website.

Back then I was a pioneer in writing about this. Today I’m still a lone wolf crying out about senior citizens with mental health issues.

We need to think about the passing of this health baton. We need to get real and start talking about the services and supports available to people with schizophrenia and other illnesses that are becoming senior citizens.

We need to talk about the reality that soon those of us who are caregivers will need someone to take care of us.

I’ll end here by sending every women reading this blog entry words of compassion, appreciation, and gratefulness for all you do.

Mental Health Acceptance Month

May is Mental Health Awareness Month.

From here on in I’ll call this Mental Health Acceptance and Awareness Month.

Like in keeping with Autism Acceptance Month in April we need to recognize that for a lot of people diagnosed with schizophrenia good things have come from having this illness.

We also need to frame May as Acceptance Month because it’s imperative that we prioritize mental health as the number-one driver of a person’s recovery.

In here before I’ve championed fitness of mind, body, spirit, career, finances, and relationships.

Without mental health all the other links in this fitness chain can be broken.

I will always fight for the rights of individuals with chronic unremitting schizophrenia. This is a given because not everyone is going to do well after they have an episode.

Most people can recover. A minority cannot. It’s those of us whose illness is more severe that require intensive treatment and unrelenting advocacy efforts to protect their rights to services and support.

Those of us who are able to recover should pass the baton to help others recover.

Acceptance of our challenges is the gateway to owning our recovery. When we resist facing the truth and are in denial this will only perpetuate the illness.

Awareness of schizophrenia and other mental health conditions isn’t the end. It’s the start. Any awareness must come with corresponding acceptance that these illnesses are real health conditions. That most of us recover and some of us might not do as well as others.

In the end this involves treating everyone with dignity and compassion.

Not whitewashing the truth. Not catering to only people we deem worthy of advocacy.

Treating everyone as individuals whose stories are valuable.

Helping others tell their stories. Listening when we hear another person’s story.

Incarceration Nation

Not a week goes by where I don’t think “It could’ve been me.”

This is because: it could’ve been me who wound up in jail after breaking into a Pizza Hut while symptomatic.

The fact is I received the right treatment right away. It’s remarkable that my mother drove me to the hospital within 24 hours. What’s more miraculous was that I was given medication right after that and within 3 weeks when I was released the symptoms had stopped.

Should the guy who self-amputated his tongue while involved in the prison system be told by the Mad in America flunkies that he shouldn’t take medication?

He was lucid enough to call for help and report that he was symptomatic. Instead of being sent to a hospital he was sent to jail. Not given treatment there he could no longer hold onto his grasp of logical thinking.

After 3 weeks in prison he crossed over and believed what his ill mind told him to do.

We’ve crossed a line in society too. I fear that justice won’t ever be restored for MH peers. I’m starting to think no one else wants MH peers to get better. Less slices of the American pie that need to be shared right?

For  awhile after my memoir Left of the Dial was published I struggled with the disclosure via the graphic relapse scene of what happened to me.

Now I see that rendering this event so vividly dramatizes what happens when a line is crossed.

As someone who lived to tell her story I want to ask you to join the Where’s NAMI Facebook group. There you can be given the details about this horrific miscarriage of mental health treatment. You can join the movement to help the family afflicted by this loved one’s descent into chronic symptoms.

I consider jailing a person instead of giving them MH treatment to be a form of malpractice. Everyone involved should be legally held accountable.

A CIT–Crisis Intervention Team–should be a routine response to the scene where a symptomatic individual has committed a crime.

Every jurisdiction in America should also have a Mental Health Court like Brooklyn, NY does where I live. Here symptomatic defendants are tried in a separate courtroom in a more human way.

What if? I ask you. What if more people got the right treatment within 24 hours like I did?

What if we were treated like human beings equal to others in society?

Instead of being seen as competition for the jobs, services, and rights that every other American takes for granted.

What if?

For an expose of this decades-long trend I recommend you read Insane: America’s Criminal Treatment of Mental Illness a just-published book.

Criminalizing individuals with mental illness has been only par for the course.

In America–Incarceration Nation–it’s easier and more expedient to lock up in jail any kind of “throwaway” person to get them out of the way.

This has to stop. Pronto.

Mental Healthcare Change

To start a more productive conversation about mental healthcare change we must talk about the root of societal ills: the economic growth model exposed in my Left of the Dial blog recently.

America–a capitalist society–has as its economic foundation the growth model.

Only the economic growth model is ravaging the earth, causing resource depletion, and human rights violations too.

This economic model has also created a prison employment sector that exploits “the justice-involved”: incarcerated individuals, their families, and communities.

It’s the “school-to-prison” complex that disproportionately has a greater effect on low-income communities and people traditionally called minorities. (I detest using the word minority to describe a person.)

I’m thinking now about how to create positive lasting changes. As I’ve not ever thought our government will ever be invested in catering to ordinary citizens instead of Citizens United corporations.

How then can we get positive mental healthcare change enacted? What can we do? Talking about injustices hasn’t corrected this imbalance of power.

Today peers are still criminalized, winding up in jail not treatment for crimes committed while symptomatic. While in jail there’s no medication given. That’s how a guy with SZ was able to self-amputate his tongue while locked up.

It’s no joke.

All of this is ultimately linked to the economic growth model. The prison industry actors make tons of money when people are jailed–and these corporations have the big bucks to lobby the government to do their bidding.

“Anything to make a buck” is the prevailing ethic of capitalist America.

Psych hospitals have been closing down for decades now. In New York City where 8 million people live there are only 112 psych beds available for those of us in crisis.

Insurance companies offer limited psych coverage–so psych hospitals won’t get rich treating patients. Even hospitals operate on an economic growth model!

What’s not right is that in America profits come before people. As long as profits come before serving humanity, no societal ills will ever be vanquished.

Those of us who have the big bucks and want to serve humanity should consider running for elected office. Those of us with the big bucks should consider opening up and operating a psych hospital.

Until this imbalance of power is reversed (I fear it won’t ever be) we have to continue to exert pressure on our elected officials.

Join your local Community Board, get active in mental health and other initiatives in your community.

You’re Not an MD So Stop Giving Medical Advice

Chris Bruni is not an MD. I refuse to give medical advice.

Telling someone to discontinue their medication and offering a method to do so is practicing medicine without a license.

I’m not here to tell people what they should do. The story I tell–the only one I have to give–is my story. I can and will talk about how taking the SZ medication every day enabled me to be in remission for over 25 years so far.

A friend of mine who doesn’t have SZ I consider to be my soul mate. He discontinued his psych medication under supervision and is perfectly fine years later.

What gladdens me is that although he’s been successful he doesn’t give people medical advice. He thinks most people with SZ need to take medication.

My friend hasn’t attacked me–like so many anti-psychiatry folk have done–for choosing to take pills.

I want to be very clear to readers now: telling people they should discontinue their medication is practicing medicine without a license.

At this point I won’t even tell people they must take medication because as said I’m not an MD.

We can only share our stories with each other. It’s up to each of us to decide what we want to do.

If someone asked me I would tell them that I think discontinuing SZ medication is too risky to chance it. That’s my belief and my friend’s belief.

You can decide for yourself if this makes sense to you. You have the choice.

Yet I also think that choosing psychosis over health is a big mistake.

No one I know who discontinued their SZ pills got better. They started hearing voices again. (I’m lucky I didn’t ever hear voices.)

Yet even stating this I cannot tell you or anyone else what to do or how to do it.

I urge you if you’re a paid peer specialist as your job not to dispense medical advice without a license. You’re not an MD. You’re not licensed to diagnose and treat illnesses.

In the coming blog entries I’m going to talk about practical career information again.

My goal is to publish You Are Not Your Diagnosis in October 2018 which is Disability Employment Awareness Month.