THE "RIGHT" TO BE SO ILL by Kathy Day

We just had a glaring incident of how untreated serious mental illness impacts the community. 

A young homeless man that I know well and love, had an extreme outburst in front of our apartment. I don’t know what set it off. He was eating a box of cereal and drinking some milk. Then I heard him yelling at the top of his lungs. He started chasing another person down the street. 

My neighbors across the street called the cops. They were terrified because they have two young boys and they didn’t want them to witness what was going on and they feared the young man could hurt someone. 

The officers who came are well trained in crisis intervention. I asked them to try to take him to a hospital. They said they’d try but wanted to let him cool down first. 

If he didn’t have the ‘right’ to be so ill, he’d have received the treatment he needs long ago. But the way the system is designed, he’ll have to demonstrate dangerousness, likely in the presence of law enforcement, before he gets any real treatment. 

Turns out he was taken to the ER a week ago on a psych hold. The ER discharged him within 24 hours.

If he’s released early again, this family will be afraid of his next incident. It’s not fair that they should have to deal with the failures of the system of mental healthcare.

 A better kind of option: Welcome Home Housing, Sacramento, CA

A better kind of option: Welcome Home Housing, Sacramento, CA

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.

 Theresa and her son, Joe, who is still waiting for a helpful diagnosis.

Theresa and her son, Joe, who is still waiting for a helpful diagnosis.

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