YOUR TRUST IS MY GOLD STANDARD by Dede Ranahan

Behind the scenes at soonerthantomorrow.com it’s me, my computer, and conversations with another mother or father or sibling. Most of the stories I post are because I read them somewhere and ask the writer if they’re willing to let me share them on my blog. Often the writer says, “Yes.” Sometimes, “No.” Once in a while, “Maybe later. I’m not ready right now.” Or, “Please post my story anonymously.”

Whatever the answer, I respect it. If the answer is positive, I ask if it’s okay if I make a few edits (most of these stories weren’t written with publishing in mind). I promise to send the writer any changes I make for her to review before I post the story. Sometimes, when the writer reads my edits (mostly punctuation) he makes further changes. Frequently, the response is “Thank you for making this better.”

Once in a while, a story is sent to me, unsolicited, through my website or through email. Usually, these stories are thoughtful, require minimum editing on my part, and present material not seen before. I love receiving unsolicited stories. I hope more of you will consider sending them to me. dede@soonerthantomorrow.com

Sharing our stories takes courage and it’s complicated. We worry about betraying the confidence of our ill loved one. We might fear retribution — from a doctor, from a social worker, or from a prison guard. And we know, from first-hand experience, that public reception can be judgmental. Not kind.

Nevertheless, sharing our stories is imperative. As I say on my home page, “We have to do this. Nothing else is working. Not healthcare. Not government. Not prisons. Not advocacy organizations. Everything's fraught with hidden agendas, bureaucratic incompetence, and self-interest. Or lack of interest.”

If we want to see change, we can’t hide. We have to stand up, speak up, and let the world know what’s really going on. The failures of our mental illness system (indolence, greed, lack of will) count on our being cowed. On our being silent. The system doesn’t want the public to know just how criminal it is. It’s been this way since the 1800s when Dorothea Dix was fighting for the mentally ill in prisons and institutions. It will be this way for another two-hundred years if it’s not called out.

Where am I going with this? One writer recently said to me, when I asked her about adding photos to go with her story, “Pick the photo you like the best. I trust you.”

“I trust you.” Three little words that make all the difference. Your trust is the currency I must use as I solicit stories and cultivate readers. Especially for this blog and for these stories. Most of us are new to this concept — publicly sharing our stories of serious mental illness. Usually, our stories are hidden away in private support groups, on secret Facebook pages, and behind closed doors and shuttered windows.

Bottom line: Sharing our stories is hard enough and without trust nearly impossible. On my blog, your trust is my gold standard. I try, with every story, to earn it and honor it.

Me and The Jazz

Me and The Jazz

YOU DON'T MATTER by Theresa Assunto

Imagine having a problem, a medical problem.

You go to the doctor. The doctor says, "I can’t help. I don’t understand what’s wrong with you."

So off you go to a specialist. Surely the specialist can help. The specialist takes his time, talks to you a bit, and gives you meds. "These meds," he says, "will help. Maybe."

So you take those meds. The meds don’t work. In fact, they make you worse. So off you go back to the specialist. This is where it gets fun. The specialist says, "Well, I’m not surprised you got worse. That’s a side effect. Let’s give you meds to counteract the side effects."

Here’s the best part. The supposed specialist then says, "I really can’t diagnose you for about ten years. I'll give you different meds during that time and hope one might work."

At this point, you're so sick you can’t make medical decisions. If you're lucky, you have someone to advocate for you. Oh, and did I mention that your friends and family don’t call to see if you or your caregivers are okay? They think you simply need to shake it off and your caregivers are doing it all wrong.

After years of medicines that have destroyed your body, after years of hope that you'll get better, you have to wonder why you keep trying. You're now alone and still getting sicker. That diagnosis, the one that was promised long ago, is still elusive. Was your recovery ever really going to happen? Did all those specialists kick the can down the road while racking in tons of money?

Finally, when you’re at your sickest, you’re put in handcuffs, loaded into a cop car, and taken to a hospital. The hospital staff doesn’t help you either. They give you different meds, ignore you for ten days, and send you home. You don't have cancer. You don't have heart disease. You don't have lupus. You don't have diabetes. You have a serious mental illness and you don't matter.

UPDATE 9/6/2018: After six years at one not-for-profit practice, my son hasn't been diagnosed properly. He's not getting any better. He sees a nurse practitioner, not a doctor, for 20 minutes every two months. She consults a psychiatrist who has never met my son to make medication decisions.

So, we waited eight months to get an appointment with a psychiatrist in a practice that calls itself "neurological associates.” We finally saw this doctor and told him, “ We want help. We want a diagnosis. We want testing.” The doctor sent for my son’s records and we returned today. The doctor says to my son, “You have a chronic disease, most likely schizophrenia. I really can’t help you but I’ll continue to see you if you want me to."

My son is mentally ill not stupid. My son was excited to go to this appointment. He thought he'd get help and the voices might go away. My son is devastated. He says, "See, no one wants to help me.” My son, obviously, doesn’t want to go back.

The doctor says, “I'll see your son again if you want me to, but isn’t this a far ride for you?”

I am sad and angry.  What doctor tells someone they have a chronic disease but “Sorry, I can’t help you?”  He also said, “There’s no testing for your son. No hospital here will take him off all his meds and try to diagnose him.”

I'm angry but not surprised. Today is our 25th wedding anniversary. My husband's sad. We hugged and he went to bed. No celebrating here.

A DIFFERENT BACK TO SCHOOL by Elizabeth

This has been the longest summer I’ve ever had. Not the good kind of long summer. A bittersweet one. I should be getting ready to send off four little and not so little girls to school tomorrow. Instead, I’m sending three. I’ve never missed her first day of school. I’ve spent a summer I should have thoroughly enjoyed driving four hours round trip every other weekend just to see and hold her for not even two hours some visits. 

I know she’s getting help, and she’s doing really well, but she should be here. Excited to start her last year in elementary school. Excited to see the patient staff who saw past her illness and saw the little girl struggling to remain here instead of a shell. Excited to come home and tell me all about her first day. 

But instead, she’ll have to do that over the phone at 7:30 tomorrow night. 

If you’re sending your kids to school tomorrow, enjoy it. Despite the fact I still have three going tomorrow, nothing quite feels so painful and heartbreaking as knowing you’re not doing the first day of school with your child, especially a milestone one. 

I’m glad I’ll be home and mostly by myself tomorrow. I don’t think I could leave my house and go to work.

Elizabeth and her daughter, Eva

Elizabeth and her daughter, Eva

A MOTHER'S FIGHT: PART II - 2017 by Carole M.

To: Psychiatric Security Review Board, Oregon State Hospital, and Oregon Health Authority:
Re: My son
Date: July 10, 2017

Please realize (as I have said for many years, and continue to advocate for) the least restrictive environment, where my son will not be "a danger to himself," is a structured group home setting.

In that structured living model, he is supported by staff monitoring, medication management, money management, household responsibilities, human interactions, healthy social and outdoor activities, regularly scheduled appointments, and appropriate mental health treatment. He does have a problem going to groups. He thinks more one-on-one talk therapy would help him. (I agree.)

It is unrealistic to expect him to provide these things for himself: to be safe, to be functional, to be financially responsible, to choose appropriate social interactions, or to be medically healthy in an "independent living" situation. He has done well during his time at Oregon State Hospital, in the Cottages, and when he moved into the structured group home in Bend. Then, because his time was coming to an end under the Psychiatric Security Review Board (PSRB) he was moved into an "independent living" setting; his own apartment in the community. He had minimal support or interaction. As I warned anyone who would listen, and as his history shows, he began to unravel. He went missing for an excruciatingly long week.

No one, who works with him now, has ever seen him in a psychotic state, or gut shot by a gang member while he was living on the streets, or near death from exercising his "civil right" of living a dangerous street life "in the community."

This time, when he left his apartment, he made it from Bend to Corvallis by bus and on foot. He had blisters on his feet, he (barely) slept on park benches, he quit taking his medication, he drank alcohol, and he had no support. Thank God he turned himself in to the Corvallis police, before being arrested, harmed, or worse. They brought him back to OSH, thanks to a missing person bulletin that had been issued.

He is beginning to recover. Nevertheless, he is not an appropriate candidate for "independent living." He ran away, and he will do it again. Why flush the last 5 years (of your work and his work for him to become stabilized) down the toilet? As soon as the PSRB incentives are removed, he'll be at the mission or on the streets - in imminent danger.

What about civil commitment? He has even advanced that option himself, during some of his more insightful and self-reflective conversations. He can say the words the court wants to hear to move him along through (and temporarily out of) the system. However, that will not save him from himself or from the streets or from being left in an untreated, dangerous, or in a psychotic state.

He's too old and too ill to survive on the streets and to keep having to start over. Right now, that is still preventable. He is a person with disabilities and several life threatening illnesses. He deserves medical treatment, just like a cancer patient deserves medical treatment. He deserves the treatment and support needed to reach his full potential. He is a kind, smart, creative person who functions well with support. Without that support, the costs to him personally, and to society in general are immeasurable.

Sincerely, Carole M

Note: Today, 8/30/18, Carole writes: My son is in a structured group home and is in the ACT program. He has a team of people who work with him - counselors, doctors, peers - and stable housing. This has made all the difference in the world for him. He isn’t being left to fend for himself. He chooses to do things like short hikes, swimming, and community outings. He usually has a good attitude and is med compliant. He struggles with side effects and diabetes. He has an eye infection which could lead to blindness if he doesn't use steroid eye drops.

Recently, he had a bike accident which required surgery on his wrist/hand and a cast. He also fractured his elbow. So he has to go from being somewhat active to resting and healing. 

Carole and her son

Carole and her son

A MOTHER'S FIGHT: PART I - 2011 by Carole M.

To: Oregon State Legislature
Re: My Son
Date: March 18, 2011

My son was lodged in Marion County Jail for 16 months (charged with Burglary 2 and giving false information to the police). After the judge ordered an aid and assist evaluation, my son waited nearly three months before being transferred to the Oregon State Hospital (OSH) for an aid and assist evaluation. As a person living with mental illness, this was not his first involvement with Oregon's (flawed, inadequate) mental health and criminal justice systems.

At OSH, he recently passed his "aid and assist" test. He was discharged from OSH and transported back to jail where he awaits another court date. Recently, I wrote a letter to the Director of Consumer and Family Services at OSH about my son. These are some of the concerns I shared:

An interdisciplinary team meeting was scheduled at OSH for my son. That same week he was transferred back to jail, before the meeting could take place. That meeting should have taken place at OSH before he was discharged. I had planned to attend. He and his care team would have been there. His evaluation, medical progress, legal situation, and his options would have been discussed. Also, he was receiving dental treatment and had another appointment scheduled. Because of the sudden discharge, this treatment was never completed. This is one example of the lack of coordination between agencies. This system needs to be improved to put the best interest of patients first.

I spoke with my son's attorney the day he was discharged. She wasn't sure what was going on with him or when his court date would be. She said she would check into it and get back to me. It's almost impossible to talk with staff, counselors, and medical personnel at the jail, even when my son has signed waivers. There are no realistic family communications systems in jail. Visitation is limited one time a week for 30 minutes. Visitors speak on a dirty phone through plexiglas wall in a small, bleak room. Mail is limited to postcards only.

In comparison, OSH patients are allowed visitors six days a week for one-and-one half hours and visits are face to face in open, more human visiting areas. Patients can write and receive letters. Family members can communicate with staff and attend meetings.

In jail, my son has been over-medicated (sedated) for convenience. A jail is not a medical facility and only minimally addresses medical issues. 

While at OSH, with his medication reduced, he did very well. He had a good doctor and an interdisciplinary treatment team. He wasn't belligerent with staff and wasn't involved in any altercations. Staff members remarked on how well he was doing and how cooperative he was.

However, instead of encouraging him, the system sets him up to fail. His medical condition, his ability to stay well, his willingness to stay clean, and his determination not to reoffend are all compromised by taking away the long term care and support he needs to become increasingly responsible and independent.

Marion County (jail and health department) may have his name on their caseload list, but they do not have the resources to provide the services he really needs. When under Marion County's mental health system, he didn't have regular doctor visits, no real safety net existed, and he's been left on his own in the community - to sink or swim - without any true transitional support.

He has been turned away from Salem Hospital's emergency department. He was self-aware enough to understand that he needed medical attention, managed to make it to the hospital, and presented himself to hospital staff. Although he was in crisis and seeking help, he was turned away (back to the streets). They said he wasn't in "imminent danger" (even though his mind was in crisis).

It breaks my heart to know he must hit rock bottom (again), commit criminal acts (again), and "become a danger to himself or others" (again) in order to receive even short term mental health care - IF he isn't shot or killed by police or criminals (again).

What kind of a system do we have where a person must commit a crime and plead "insanity" in a court of law before receiving the medical treatment they need?

Imagine if cancer patients were in the same situation. What if they were required to become desperate, self-destructive, and criminally active before they could access and receive the medical treatment and care that they required? Then there would be a public outcry.

People living with mental illness also deserve to be treated with dignity and respect. They deserve to have the support and professional care that anyone with a chronic illness should receive, including a logical continuum of care. The individual, his or her family, and the entire community would benefit.

When my son was a little boy, he never said, "Mom, when I grow up I want to be a criminal." A jail is not meant to be a treatment facility. A plea bargain and probation are enticing options to him. No one wants to be locked up or stigmatized. From the revolving door perspective, he will end up back on the streets, homeless, or rooming with bedbugs and cockroaches in some outrageously expensive and inhumane "placement." Speaking from past experience, that lifestyle also includes self-medication and associations with people who do not have his best interests at heart. He will spiral downward until he has another psychotic break, commits a crime, is injured or killed. If he isn't killed, he is likely to be arrested and jailed (again). Statistically, he is also likely to live 25 years less than if he were not a person with a mental illness. He is also at a high risk for suicide.

My son is an intelligent, creative, 35-year old man who deserves a chance to live a better life than I've described above. He needs appropriate medical and therapeutic treatment to become stabilized. It takes time to become well and master the skills necessary to address and replace long term habits, perceptions, and behaviors. 

I believe my son has the ability to change, to become a healthy and productive member of society, and that he deserves a chance for happiness, companionship, and fulfillment in his life. We give lip service about the "the civil rights of the mentally ill." What about the right to life, liberty and the pursuit of happiness? These are all things he wishes for himself, and that I wish for him.

This is America.

Sincerely, Carole M.

 

Marion County Jail, Salem, Oregon

Marion County Jail, Salem, Oregon