Thursday, February 12, 2015

A beautiful, fabulous day and the importance of having other people in your life and holding onto hope

Folks, I'm going to tell you about my birthday party. It was really incredible. I told people it was one of the best days of my life, and looking back, that is true. It really was. It was last weekend in a local public park, in a shelter overlooking a lake. I got there early to set things up, and my friend who I've known for ten years (ever since we lived in a group home together), who is one of my very best friends, came with her husband and nephew to help set it up. Then my dad and his wife came, and much to my surprise, along with them was a cousin of mine I hadn't seen in years! He lives in Baltimore. He's a lawyer, and we don't really ever talk, however, he came down here for my birthday party to see his "only older cousin" (I'm the oldest of 25 grandkids on my dad's side of my family) turn 40 before him. That was really meaningful, and I will tell you why. When I was very little, until the age of six, we lived in Baltimore, so this cousin was in my earliest memories. We would play together, and as my grandmother used to say and my mom agrees, I'd boss him around. I made him cry, allegedly, sometimes because I'd tell him what to do. But we were buddies; he was the first boy grandchild, and I was the first girl. We had a "Brat Club" and I was "Queen Brat" and he was "King Brat". Then, when I became psychotic, at age 23, I was living in Baltimore again, with our grandparents. And a horrible thing happened. I'd been having paranoia and delusions, with some visual hallucinations that I thought were real because I had no idea I could be psychotic. And my dad and I had a huge fight, which ended when I locked myself in a room and called the police to tell them he was going to kill me. I really believed he was at the time. In reality, he did hold his fist up to my face. However, he was not going to kill me; I was paranoid about that.

So the police came. My cousin's dad, who is my dad's oldest brother, was a police captain for this police department. And he came. And another uncle came. They wanted to talk to me about whatever was wrong with me that I would do this to my dad. I was angry. My dad had screamed at me, and scared me, and I really believed he was going to kill me. I remember all this so clearly, as if it was yesterday. And my cousin was sitting in the living room when my grandparents were back home. He was sitting there, when my grandmother, who I loved all my life, said angrily, "You need to see a psychiatrist, Jenny". And I told her that her son needed to see a psychiatrist; I didn't know I needed one. My cousin helped me dig my car out of the snow. And that was the last time I saw that cousin for the next approximately nine years. That was the last time my dad had anything to do with me for six years. I never saw my youngest brother (from my dad's second marriage) until he was five years old, after I got diagnosed with Schizophrenia, and apologized to my dad for numerous things.

So it was meaningful for this particular cousin to come to my birthday party. It was meaningful for my dad to come. It was really cool that both of my parents were there; something that never happens! And I got a picture with my mom, my dad, and my brother and sister who I helped raise after my parents got divorced. I don't have a single picture with all of us in it from my entire life. So that was really neat. The last time we were all together and getting along was when I was about 12 years old. My parents separated when I was 13, and divorced when I was 14. Six months later my dad was getting remarried to a woman I hated before he ended up hating her too. She was a horrible human being in the way she treated me and my brother and sister, but I'm over that now. I never think about her or care about that stuff anymore.

The other thing that was meaningful was that about 46 people showed up for my birthday party!! I got home that night and wrote down the names of all the people there! Oh, and the biggest and best surprise was that my sister came down from Baltimore!! I had seen her at Christmas, but she's been living out of state for about a year and a half or two years now, so I rarely see her. She never calls me, and I miss her a lot. It was so fantastic when I saw her! My mom said she wanted me to turn around, so she could put a hat on me. I was griping about not wanting to wear a stupid hat. She put this goofy tiara with huge pink antennaes that said "40, 40" on it on my head, and put a necklace with big "40" beads around my neck, and put a big, plastic cane that said "Over the Hill" in my hand. Then she said, "Okay, now turn around". I had my eyes closed, so I had no idea what was going on. I turned around, and facing me was my sister. I started jumping up and down like a little kid, screaming, "Oh my god! Oh my god! You're HERE!! You're HERE!!". And then I hugged her really tight for a long time while everybody laughed at my goofy reaction.

It was wonderful, because so many fantastic folks were there! I couldn't even believe that 46 people liked me enough to show up at my birthday party! I was in awe. I think some of the people there were surprised at how many other people were there too. My brother's girlfriend sent me an email saying she was so amazed how many people cared about me and loved me that they would be there for that party. It was really uplifting in so many ways.

We also had music. I invited my former professor and friend's daughter to play the cello, and I asked some musicians I don't even really know from my non-church church to come and play their music, and they did. So when people wanted to have cake, they played "Happy Birthday" with their instruments as everybody sang. Twice. The guy that was the lead musician of the group from my non-church church said, "That wasn't loud enough; I want you to do it again so the people across the lake can hear you!". And everybody sang really loudly. I was embarrassed to have all these people staring at me. These are people I like and admire. But then I looked around for a second at all the people staring at me and took it in. I realized, you know, my life has changed a LOT. I used to have zero friends. I used to spend my life alone in my bedroom - regardless of the location of where I was living, some bedroom in some dwelling in some state - and I literally had no friends except people I corresponded with on the internet. That was it. I never had people to converse with, people to go places with, people who acted like they cared about me much. Not at all. For a very large portion of my life, I was completely alone. The only human contact I'd have was with family members, people I worked with or shared a home with, or whatnot, and nobody who I'd call a "friend". Nobody. I'd stare at walls and talk out loud to myself, and sit at computer screens and write emails because I had no one to talk to, no one who was there for me. Not one person. Zero people.

So now, there were 46 people who showed up, and I know almost all of them (I don't really know the musicians from my non-church church). There are even people who didn't make it who I'd call friends! So if you add that up - my life has made a remarkable turn-around. I am not totally alone on this planet anymore. Those days are in the past. I'd like to say it's because the planet is just full of nice people who always reach out to me, because to some extent there are people who have made an effort to reach out, but really, the reason I have these people in my life is because I worked on my life.

It takes work. I believe strongly in the power of medication, but I can also tell you with no uncertainty that medication alone does not solve the problems of mental illness. Medication alone is not enough, and never will be enough. If you have Schizoaffective Disorder, or any other serious and persistent mental illness, maybe even any kind of mental illness, you really need a therapist, maybe a case manager, and you also need to work on yourself and the ways you manage your daily life. I think I need NAMI (National Alliance on Mental Illness), too. I think I need the other places these friends came from too. They come from places I've gone to specifically because I did not want to spend the rest of my life in isolation. I went to NAMI because of this in 2007. I went to the National Organization for Women for this in 2009 or maybe a bit earlier. I got on the board of directors for the state of Florida for NOW in 2009, and I started doing volunteer work for NAMI in 2008. I went to my non-church church as a visitor a few times starting around 2008, but didn't officially attend on a regular basis until this past August. That's just six months ago. So even in six months things have changed dramatically. I have to say I have put major effort into this change. I'm not saying that because I'm trying to make myself sound better. I'm saying that because it's just true. I also had people at my party from work, where I've been since 2008, and my best friends who I've known from when we lived in a group home together, which was in 2005. What happened in 2005 is that I got diagnosed and put on medication, and I got a fantastic, irreplaceable case manager who changed my life and stayed in my life as my case manager for seven long years. Those things meant a lot.

I want to tell you these things, because I want you to know that if you are alone, and if you are suffering, you are not alone, and you will not always suffer, because you have the ability to get help and get better. You absolutely have to have one critical element to survive an illness like Schizophrenia or Schizoaffective Disorder, and it doesn't come in a bottle or an office. It comes from within. It's called HOPE. You absolutely have to have hope. No matter what happens in your brain, no matter what traumatic experiences you go through (I've been through countless ones), no matter where you live or if you're homeless, no matter if you're assaulted or abused, no matter if you feel like killing yourself, no matter if the voices and visual hallucinations assault your mind and drive you to want to do horrible things to yourself, no matter if the delusions and paranoia terrify you every single day for years, no matte WHAT. You absolutely have to remember that there is hope.

I'm not saying people will "recover". I read a good article recently by someone who said she didn't like the term "recovery"; she just liked the term "hope". And there are valid reasons for someone to make that argument, because not everybody does "get better". I'm not "all better". I'm improved, but I still have symptoms. I started getting overtired and overworked lately and I've been having some mild paranoia and hearing some of the "doublespeak" that used to plague me on a daily basis. This causes anxiety because of the dreadful thought, "I'm going back downhill again after I've been doing so well!" But I'm not going "back downhill". I'm just having some perceptual problems, and they are there, but I can deal with them. I can do reality checking with myself, talk myself out of the paranoid thoughts, and I can keep doing what I'm doing. I'm working, going to school, going to doctors' offices, going to therapy, going to a chiropractor, going to church, doing research and writing and reading (and my mind is actually working well enough to do these things well!), and walking for exercise three times a week or at least as much as I can, and taking care of my cats, and basically, well, living. It's a lot to take on, and maybe that's why my brain is acting up, because maybe I'm doing too much. That's what therapy is for. With a good therapist you can get assistance in monitoring yourself and get reminders of what those coping skills you have in your mental toolbox can do for you.

Today, I have hope. I have friends, and a decent life too. I have my family that actually speaks to me and doesn't all hate me or ostracize me......I have more than myself. Life really kind of requires having more than yourself.

My oldest friend who is not an internet friend is a former professor of mine I met about 19 years ago when I took my first college writing class. Actually it was my only college writing class. He convinced me I was intelligent. That was no small task. To this day he'll remind me I'm intelligent when I need to hear it. We mostly corresponded via email over the years as I ran around the country, going from hospital to homeless shelter, to hospital, to assisted living facility, to rented room, to hospital to group home, etc., etc., etc. for years. And he was at my birthday party. It was his daughter, who was not born when I met him, who played the cello. It meant a lot for that family to be there. He said, when he was leaving, "I'm really glad you made it to forty, because there were many times when I really did not think you would." And I said, "Me too."

I'm really glad I made it to forty. Hopefully, I'll make it to 87 like my grandmother who's still alive. That would be cool.

A month ago, at a NAMI meeting, two women were talking about the horrible, hopeless situations of their daughters. I went up to them. I said, "there are great support groups and Family to Family classes NAMI offers, you could attend". They looked incredulous. One of them said to me, "Do you even know anyone with a real mental illness?". I said, "Yes, actually. I have Schizoaffective Disorder." They looked shocked. "But, how can you stand here talking to us like there's nothing wrong??!!". I said, "I'm on medication. I'm in therapy. I've gotten treatment." I told them I was on the NAMI Board of Directors. They asked me if I was able to work. I said, yes, I've been working since 2006. I said, I'm in college and about to graduate later this year with a bachelor's degree. I told them, "things can get better". After we talked for a minute, they both thanked me. One of them said, "You've just given us more hope than anyone else ever has in all these years". Both of their daughters were about my age and both of them had Schizoaffective Disorder or Schizophrenia. Both lacked insight into their illnesses because they weren't getting the help they needed. I did not change that. I just shared that things can improve. Then, there was a third woman who told me her daughter was traveling around the country, psychotic, and she didn't know what to do. So I talked to her for a minute. After I left, I was glad I went to that meeting, because when you can offer a sliver of hope to someone who is feeling really hopeless, it really makes you feel like something as simple as going to a meeting was worthwhile.

So if you are feeling hopeless, don't give up.

Saturday, January 17, 2015

On Turning 40 (and making progress)

The Summer Day

Mary Oliver

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

from New and Selected Poems, 1992
Beacon Press, Boston, MA
Copyright 1992 by Mary Oliver.

 Every year, if we're lucky, and we're not like Benjamin Buttons (if I recall that character's name correctly), we get a little older.

Soon, I'll have a big birthday. I'm going "over the hill". I'm going to be 40.

I used to really dread my birthday. I spent so much of my life wasting time thinking of ways to end my life, and worrying that I would never get to live it like I wanted to at the same time.....I spent so much time plotting attempts to jump from a bridge, lie down on a railroad track, buy a gun, stockpile certain pills, etc., and I would revert to these thoughts when things got to be too much, when I lost hope, lost faith in myself and humanity (and medicine), and when I just felt like I couldn't take it anymore.

I'd like to say "I never do that anymore", but the last time I did that was five months ago. However, when I did that the last time, it resulted in me admitting myself, under my doctor's advice, to a hospital. It didn't result it months and months of plotting, nor did it result in a suicide attempt. It resulted in a brain tune-up inside safe corridors. And if it happens again, which, knowing my history, it might, then I'll go to the hospital again. I hope it never, ever happens again though. I plan on working very hard (continuing to work very hard, that is), to make sure it doesn't. I plan on living my life every day and not wasting my life wondering whatever happened to my life.

I don't plan on spending this month of my birthday, when I turn into an official "older" person in the eyes of youth, wishing I was dead, regretting all the wasted time, regretting things I've done, and fretting about everything I never got to do. I never got to do a lot of things I wanted to do. And that's done. That's the past. There is no going back and fixing it. I never got to attend Smith College like I was supposed to in 1999. I never will. But, did I attend a college? Yes. Am I going to graduate with my BA before I'm 40? No. But am I going to graduate with my BA when I am 40? Yes. I am going to be finished, after starting college in 1993, with my Bachelor's Degree in Interdisciplinary Social Sciences, specializing in Social Work and Political Science in December, 2015. I will be 40.

I can't go back and fix the wasted years, and you know what? That's okay. Because everybody has regrets. Some people say they live with no regrets, but I don't really buy that. I think we all have times when we wish we would have done something differently, said something differently, or not done or said something we did do or say. I think that is part of being human, unless you are a complete egomaniac who believes they are perfect. I've never believed I was perfect, but I used to always wish I was. Enter, at age 12, Anorexia Nervosa's beginnings, my first diet, my first thrill at wearing a size zero. My first step into mental illness.

I don't have an eating disorder anymore, though. I also don't practice self-injury anymore. I don't regularly think about suicide anymore, either. I don't regularly wish I was dead. I don't regularly think I deserve nothing but death. I don't regularly hate myself to the point of wanting to harm myself. I really don't. And that's pretty goddamn impressive, for me. I've improved.

Additionally, I've practiced enough self-care to get myself the therapy I've needed and the medications I've needed, and the medical attention I've needed, for years now. Lots of years, actually. I've been on antipsychotics, antidepressants, anxiety medications, and mood stabilizers for the mental health stuff all the time since 2005. That's ten years now. I've been in therapy since about 2007, most of the time. I go to therapy every week now, and I have for a long while. I research the medicines I take, and I know which ones work and which ones don't. That's how I knew to ask for Saphris, in July, when my doctor wanted to resort to electroshock treatment because, "nothing works", for me. Stuff has worked - it just never worked as well for as long as Saphris has! And I asked for the right damn drug. I trusted myself enough to do that. I did that. The doctor didn't come up with that idea; I did. I did my research, all suicidal as I was, and I was planning on jumping off the Skyway Bridge, but I was also well enough to think "what about Saphris?" What about living?

I thought, "What about living?", and I went to the therapist, and the doctor, and the hospital that day. I didn't even drive to the bridge. Thank you, self. You have come a long way since 2005 when you tried to drive off the bridge.

Do you know what has happened since July? I have stopped having auditory and visual hallucinations and delusions. I have stopped having them. They are gone. There are almost no instances of them at all. That is completely, and utterly, amazing. What else has happened? I reached out for support, a lot. In the hospital, I had to ask my family to help me both financially and in taking care of my cats. I had to ask for my case manager and her supervisor and her supervisor's supervisor to help me with my apartment situation, and they did. I didn't get evicted for having such a horrendous flea problem that the place was crawling with fleas. The place was cleaned, treated, and the cats were treated, and I got to go home. I then took good care of the cats and the apartment. I kept the apartment clean most of the time. I took the cats to a vet for the first time either of them ever got a real exam, because I found a charity that would supplement the cost of the veterinary care. I did that by myself. I have treated the cats for fleas, treated their ear infections, and made sure they don't go outside. I have vacuumed regularly and I didn't have to pay someone to clean for me because I clean for myself. I don't need to ask my friend to clean for me using money I don't really have. I can clean up after myself. My mind is working well enough for me to handle that. My mind wasn't working that well six months ago or a year ago or two years ago.

I joined a church, and I'm a Unitarian Universalist now. I did this to branch out into the social realm, partially, because I love my involvement with NAMI, and I'm still involved in NAMI, but I also don't want my entire existence to be defined by mental illness. So now, besides having NAMI friends, and feminist friends, I have humanist, atheist, agnostic and other Unitarian friends. And I like that.

I also started eating in a much more healthy fashion. I created a budget and stuck, most of the time, to that budget, by not eating microwave dinners and fast food, and by going to food pantries. This did not solve the long-term problems of credit issues, but it did solve the problem of not having any money to pay my rent. I started exercising, for my health and well-being. I started practicing mindfulness. I started noticing the birds, the trees, the lakes, the flowers, the bunnies, the squirrels, the pine cones, the sun, the grass, the moss, the lily pads, and other things in the local parks where I walk. And I've lost 35 pounds since August, which is really good, because I'm prediabetic and overweight, thanks to the medications that I used to take, so I need to lose weight very badly. So I'm doing it. I don't just think "I need to lose weight", and do nothing. I think, "I need to walk", and I walk.

I went back to work, after they tried to fire me for being in the hospital. I found out I was going to end up laid off from my job at the college where I work, along with coworkers. I looked for other jobs. I got another part-time job at the college, with the hope that it will turn into something more.

I went back to school two weeks ago. I'm taking two classes that are interesting, and thought-provoking, and I like them. I'm keeping up with them. I might ask for a note taker for one of them, as I have had to do in the past, via the office for students with disabilities, and that is okay. I can do that. There's nothing wrong with that. I'm not embarrassed about that.

I'm going to finish my degree. I'm thinking about graduate school, even. I'm thinking about the many things I not only want to do but also can do, and will do.

So, later this month, I'm turning 40. I'm not going to waste my time getting depressed about it. I'm actually going to celebrate it - odd though that is for me! I'm throwing a big, OLD birthday party, and inviting tons of people. It's going to be in a lovely local park in early February. I wish that everyone who reads this blog could come, but as most of you don't live near me, I won't plaster an invitation here. I do want to thank you though. Thank you for all of the support over the years that I've written this blog. Thank you for your comments. I appreciate each one very much.

And you know who's coming to my birthday party? Both my mom, and my dad - with his wife! My parents have been divorced 25 years, and they don't speak. The only time they've been in the same place at the same time in 25 years were when my brother got married and when my sister graduated from college. My dad didn't come to my college graduation when I got my AA degree. But he's coming to my birthday party. I never got married, so I never had an engagement party or bridal shower or bachelorette party, or any of that. I never had a child, so there was no baby shower. I never lived in a place of my own other than a one-bedroom apartment, so I've never had a housewarming party. But I'm going to have a big birthday party. I'm inviting people from NAMI (National Alliance on Mental Illness), people from NOW (National Organization for Women), people from my job, people from my non-churchy church, and a couple friends I've known for years who aren't part of any of these organizations. I don't know what it will be like - I guess interesting would be one word - but I think it will be fun, at least that is my goal. And I think it will be a good way to venture into being 40.

What do you plan to do with your one wild, precious life? I plan on living mine.

Friday, January 09, 2015

Taking Action #WhoFailedPhoebe? Answer: Florida Did. #WhoFailstheHomeless? Answer: Clearwater does

Friends, readers, folks who care.......

I am very disheartened by some of the things going on around me in the world, where I live. So in the past few days, I have done two things to take action. I do what I can, like most people.

I was walking through the park near my apartment four days ago, where I love to go to practice mindfulness and get exercise, for my health and well-being. It doesn't do my health and well-being much good to see homeless people sleeping on the ground there, but they are always there, either sleeping or eating or  talking or just living. That is where people live. In the park. Why are people living in the park? Because they have nowhere else to go. There used to be a good shelter called CHIP in Clearwater, where I live, right down the street from me. But that was closed about three or four years ago. And the homeless people who lived there now have only one other shelter in the city that is within a reasonable distance. The well-funded, large shelter in Clearwater, called Safe Harbor, where people who test positive for drugs or alcohol are forced to sleep outside on cement, is nine or ten miles from the part of town where these people live. That is not exactly within walking distance, and when you're homeless, you generally lack a lot of bus fare.

There is no public transportation to take homeless people to shelters. And as I walked through the park, thinking about this, I came across a pile of human feces sitting on tissue paper on the ground. And that is when I thought about how, back a year or two ago, when the City of Clearwater decided in its infinite wisdom to do a "crackdown" on the homeless by locking up all the bathrooms in the public park, it occurred to me that the people living in this park would be left, at many times of the night especially, with nowhere to go to the bathroom but on the ground outside. And that is what they are doing.

I went up to a public works truck sitting there. There was a man inside in a uniform. He rolled down his window. "Can I help you?" "Yes,", I said, "Can you tell me why there is so much pollution in this park? Why is there human feces on the ground? Are the bathrooms locked at all times?" He said they unlock them when the kids have soccer games there, but not at other times, because, "The homeless people just mess them up".

I asked, "Who can I write to about this?" He said he did not know. So I thought about this as I walked home. I planned out what I wanted to say and who I wanted to say it to. I wanted to say that I have been homeless before. I wanted to say that I know what it's like to have nowhere to go. I wanted to say that to ignore and dehumanize and degrade and humiliate and completely, utterly disrespect the most vulnerable, neglected people in the population is disgusting, and beyond inhumane. It is repulsive. And I wanted to say that since I live in this town, and I like this beautiful park, I don't really like walking into piles of human feces, and I don't think anybody wants to leave their human feces on the ground in a park any more than I want to look it.

So I wrote a petition. That was four days ago, and now almost 900 people have signed it. Would you be so kind as to help me get it to 1,000 signatures? I plan on taking it to the Clearwater City Council, not just by email, but by a personal visit.  It is here: Assist Homeless Citizens of Clearwater by Reopening Public Restrooms and Providing Increased Funding for Homeless Shelters

Here's the tiny url: t please tweet #ClearwaterHomelessMatter if you're on Twitter. Please post to your Facebook pages and blogs.

Another thing disturbing me is the tragic death of five-year-old Phoebe Jonchuck, whose psychotic father, John Jonchuck threw her off the Sunshine Skyway Bridge yesterday to her death. This did not have to happen. The man had told clergy and his attorney and the police things like "I am the Pope" and "You are God" the day he killed his daughter. But the police, who were most likely not Crisis Intervention Team trained officers, did not Baker Act him. The Baker Act is the law that allows people with mental illness to be forcefully subject to mental health evaluations and hospitalized for 72 hours. The Baker Act saved my life when I almost shot myself in 2005, but it didn't save my life when I tried to drive my mom's car over the top of the Skyway Bridge in 2005 and totaled the car, because I had the clarity of thought to lie about my state of mind and pretend like it had been an accident, to avoid being sent to a mental health ward or hospital when the policeman talked to me in the emergency room. My mom and my brother both called that emergency room, and both told the staff that this was a clear suicide attempt and that I had a long history of mental illness. The staff discharged me to go home in a cab with some clothes they gave me that were leftover by some man, since my clothes had been cut off me in the ambulance while I answered the question, "Are you pregnant?" with "I'm not sure", because I thought I might be pregnant with a dead fetus.

What I am saying is that the Baker Act is very good and very helpful, just like Short  Term Rehabilitation (SRT), was very good and very helpful for me in 2005, when I was finally sent there after finally being diagnosed correctly. It saved my life being Baker Acted into SRT for six months. But guess what? SRT is long gone. The Florida legislature thought it fitting to slash the budget for that so badly that it does not exist anymore.

So tonight, here at McDonald's, again, with my laptop (I really wish I could afford internet at home), surrounded by my homeless neighbors who are here to get out of the cold, I wrote a letter to the editor of the Tampa Bay Times about this horrific incident with this little girl. And this is what I said:

Subject: Florida Failed Phoebe Jonchuck
People on social media are asking "#WhofailedPhoebe?", and I have an answer. The State of Florida failed Phoebe Jonchuck. Florida carries the shame of ranking 50th among the 50 states in mental health funding, and this is sadly due to the ignorance about mental illness that plagues voters and legislators alike. A man who believes he is the Pope, and that people he is speaking to are God, as John Jonchuck did, is clearly in the midst of a psychotic episode, particularly when he professes to having a history of mental illness. I know, because I have been there. In 2005, I nearly ended a life on top of the Sunshine Skyway Bridge, but that life would have been my own, not an innocent child's. Under a deluge of command auditory and visual hallucinations, and believing I was Jesus Christ, I was sent home from the emergency room, after totaling the car I was driving, while trying to drive off the bridge that night. I had told EMS workers that I "might be" pregnant with a dead fetus. Little did they know, I had held this delusion for four long years. Even in that state, however, I had enough fear of psychiatric hospitals and enough clarity of mind to tell the police that I had simply, "lost control of the vehicle". Sadly, they did not Baker Act me.

Later that year, I was finally Baker Acted by approximately 15 police officers after nearly ending my life with a firearm. Thankfully, that time, I got the long-term Baker Act and was hospitalized in the now-defunct Short-Term Rehabilitation (SRT) program for six months, forced to take medication I had never known I needed before. Today, the SRT programs in Florida are gone, due to the infinite wisdom of the Florida legislature, which slashed the funding for these vitally important programs a few years ago.

When I speak to Pinellas law enforcement officers during the county's biannual Crisis Intervention Team trainings each year, I tell them these facts. I also tell them how important it is to ask a person who is clearly mentally ill more questions than, "Do you have a plan to harm themselves or others?", as many in a psychotic state will respond with a "no" to that question, even in the midst of crises. The subtle cues necessary to catch someone before another life ends over the side of a bridge are recognized when CIT officers respond to crisis calls, as they are trained to handle them. The CIT programs in Florida have successfully increased the number of Baker Acts that occur each year.

Perhaps if funding existed to put more than 80 officers through CIT training in Pinellas County each year, and if funding existed for John Jonchuck to be hospitalized for six months in an existing SRT program, precious five-year-old Phoebe would still be drawing pictures or playing outside today. Now in the aftermath of her death, people are wondering who to blame. If you know nothing about psychosis, if you do not exercise your right to vote, or if you do not care about how many people tormented by the demons in their brains are living next door to you, then blame the ignorance that has prevented you from understanding what psychosis is and what to do when approached by a psychotic person.

Today, I am alive because of the Baker Act and the SRT program, which, if they could have been utilized, may have saved a man from killing his young daughter. If you care about the death of Phoebe, vote for legislators who will actually increase mental health funding in this state, rather than gutting it as they do almost every year. If someone says something to you that is clearly the evidence of a delusion, call for help for them, and keep calling. Do not give up on your fellow humans. Also, always remember that a person with a severe and persistent mental illness is more likely to kill himself or herself rather than someone else, and that jails are not the solution to the societal neglect of brain diseases. Before you demonize John Jonchuck, understand that he is very sick. If more people had understood this fact before yesterday, his daughter would still be alive. Florida needs a wake up call about mental illness. Let this tragedy be that.


Jennifer Robinson

Author, Episodes of Schizophrenia

Friday, January 02, 2015

Walking and the movie, Wild

I went to see the movie, Wild, yesterday with my brother and my mom. My brother actually picked it out; he's read the book (I didn't even know there was a book). I'm proud of my brother for picking this film. It's a feminist film in many ways, and it's got some of the best quotes from my favorite authors in it, such as one by Adrienne Rich. This is the entire poem:

Power, by Adrienne Rich

Living in the earth-deposits of our history

Today a backhoe divulged out of a crumbling flank of earth
one bottle amber perfect a hundred-year-old
cure for fever or melancholy a tonic
for living on this earth in the winters of this climate

Today I was reading about Marie Curie:
she must have known she suffered from radiation sickness
her body bombarded for years by the element
she had purified
It seems she denied to the end
the source of the cataracts on her eyes
the cracked and suppurating skin of her finger-ends
till she could no longer hold a test-tube or a pencil

She died a famous woman denying
her wounds
her wounds came from the same source as her power

So, I write this to tell you that the them of this movie is marvelous, and wonderful. And it is all about how your pain, your horrible experiences, your trauma, everything you live through that really sucks at the time, can drive you to be a stronger, and more powerful person, particularly a more powerful woman.

I loved this movie! I think everyone reading this blog should see this movie. It made me want to be a hiker. Without knowing that the movie was about a woman who walks 1,000 miles to find herself, I went to the movie wearing boots; albeit they are not hiking boots, but they are boots and they're the only boots I own, which I never normally wear.

I also go walking a lot. I don't hike (never have, having lived in Florida most of my life, and not near any wilderness, as well as having never been athletic in my life), but I would like to hike. I would like to increase my walking time (the most I've done is 50 minutes), to an hour as many times as I can fit it in, in a week. Usually that is only 2-3 times, and usually it's only 20-30 minutes, but I'm doing something, which is better than nothing.

When I walk I often go to the park I like near my neighborhood. I walk around the lake, and observe the wildlife. There are egrets, rabbits, ducks, fish, all kinds of birds, and I believe alligators, though I've never seen one of those there. At the park there are little stands with pictures of the wildlife, and they tell you the names of the birds and fish.

There are also beautiful trees, which produce pine cones that fall all over the ground this time of year. And there are flowers, and, most importantly to me, many, many daisies. I love daisies! My nickname on here is "Jen Daisybee" and that comes from years ago when a group of "flower friends" and I picked flower nicknames for our "email garden". We didn't want to just call it an email support group; we called it a garden. I've mentioned this here before, but I say it now to explain that picked daisybee because daisies, as my friend Christa Snapdragon said, "grow through cracks in the sidewalk". I found a book on flowers with a wonderful quote about how daisies withstand the trauma of lawnmowers, and that they are a symbol of survival and "childlike innocence". And the "bee" in "daisybee" comes from my friend Ali SunLilyFairyFly (or something like that) saying that I was so busy running around like a bee and avoiding my problems (she was right, but I was in no condition to know that then and she didn't realize what my problems actually were either), that eventually I was going to get "stung in the ass".

So, hence, I became Daisybee. And I like that name. I like daisies because they do grow through pretty much anything. When I walk through the park, I look at them, and they make me smile.

When I walk, sometimes I do stretches, and deep breathing a lot too. I have learned that deep breathing calms me and helps me cope. I want to get my anxiety medication reduced when I see my psychiatrist next week, so I have been working on other means of dealing with anxiety for a while now.

I also do a lot of self talk when I walk. Since I stopped having constant auditory hallucinations, what has started to happen to me is that I say a lot of really, really derogatory things about myself to myself in my head. So I have to talk back to myself, in my head. I say, "God you're such an idiot!" And then I will say, "No, you are not an idiot. Maybe you made a mistake because you are human and everyone makes mistakes. But you are still intelligent." Or I'll think, "God you're so fat and disgusting,  you make me sick!" And then I'll tell myself, "No you are not disgusting. Perhaps you need to lose weight, and that is why you are currently walking to take care of your health and get in better shape. That does not mean you are "fat", and you don't even believe women should ever call themselves "fat", so why are you letting those old tapes run in your head?" I'll think to myself, "God, I hate myself! I want to die!" and then I'll say, "You do not hate yourself, but you are angry about something and blaming yourself. What are you angry about? Figure it out. You do not want to die. What are you upset about? Figure it out. What can you do to resolve this?"

And I'll tell myself things like, "Breathe in the peace and serenity; breathe out the self-hate. Breathe in the trees; breathe out the anger. Breathe in the lake; breathe out the regrets. Breathe in the beauty of nature; breathe out the anxiety and worries."

And I'll walk and do that while I do deep breathing. You breathe in through the nose, hold it for at least six seconds, and breathe out through the mouth. It's very healthy and healing for the body and mind.

So this is what I wanted to say about walking. Walking is good. Walking your way towards health and towards a better self is good. Walking towards inner peace is helpful. Go see the movie, Wild, if you can!

Wednesday, December 31, 2014

Looking Back on a Year; Looking Forward to a New Year

"Life can only be understood backwards,but it must be lived forwards."
- Soren Kierkegaard

As 2014 ends, and 2015 begins, it can help to look back on the past year, if only in order to understand it better, to wrap things up in one's head better, to figure out exactly what happened and why. It's also important, when looking at the past, to only look at it, and to not move back in there. I don't want to live in the past. I spent too much of my life doing that. I used to always think about my regrets. Now, I tell myself, when I catch myself thinking about some stupid thing I said or did a few minutes ago, or an hour ago, or ten years ago, "That is over now. That is done. It cannot be undone. It does not matter anymore. Forget it."

I did a lot of regretful things in 2014, and that's normal. I'm human. We are not exactly perfect creatures. If we were, the world would not be such a royally screwed up place. However we also do a lot of things right. That's why the world is such a beautiful place. It all depends on the color of the lenses you're looking  through. So, I did some things well in 2014 too.

In 2014, the following things did not go well:

  • Clozaril did not work for me. I was incredibly despondent, withdrawn, apathetic, isolated, depressed, miserable, out of it, neglectful of my personal hygiene and of the state of my disgustingly messed up apartment, up until July. I didn't keep up with my dishes. I didn't know how bad off I was. I lacked insight into the terrible state of affairs.
  • I didn't realize my apartment had a flea problem. The flea problem got completely out of control, because I didn't realize there were any fleas at all. They got so bad that when I finally landed in the hospital, they crawled on people's feet when people entered my apartment. They got into my neighbors' apartments. 
  • I almost jumped off the Sunshine Skyway Bridge and killed myself. It was all planned out in my head.......

The following things went well in 2014:
  • I did not jump off the Sunshine Skyway Bridge. I went to my psychiatrist and told him I refused to take Clozaril anymore because I finally figured out that it was most definitely not working. He wanted me to get electroshock treatment because most antipsychotics have not worked well for me. I refused electroshock treatment, and asked, instead, for Saphris. He put me on Saphris that day.
  • That day, I also went back into the hospital. My mom had come to my psychiatrist appointment with me (a first), and told the doctor that I posted a link on Facebook to a website about people who jumped off that bridge. The doctor asked me if I felt safe to go home. I didn't. I told him the truth. I went to the hospital. I survived.
  • Not only did Saphris work, but it work better than anything I've taken in many years. Not only did the auditory and visual hallucinations and delusional thoughts go away, but they've stayed away, since July 17th. I haven't heard double speak all day long, every day, like I used to even on the medications I was on before. I haven't heard it at all!! This is absolutely amazing. Totally amazing.
  • I worked out a budget in the hospital, because one of the things that made me suicidal was my financial problems, which lead to constant harassment from debt collectors. I followed that budget. I stopped shopping, and started going every single month to two food pantries to afford food. I stopped eating fast food and frozen dinners.
  • I started drinking green tea, and water, constantly, and stopped, completely, Diet Pepsi and Diet Coke. 
  • I started making green smoothies for my health
  • I lost 32 pounds.
  • I started walking
  • I took care of my health by going to my chiropractic intern twice a week whenever possible. I went to my rheumatologist and didn't cancel my appointments. I saw my therapist every week, whenever possible. I took care of my health by getting all sorts of incredibly painful and stressful medical problems dealt with, and dealt with promptly.
  • I made plans to go back to college again.
  • I got fired from my job but got my job back by threatening to sue the employer for violating the Americans' with Disabilities Act for firing me based solely on the fact I was in a hospital. I returned to work the day after I got discharged from the hospital.
  • I found out I was being laid off from my job soon, but I also found another job, for just four hours a week, but at least it's a foot in the door.
  • I didn't let myself get suicidal about losing my job.
  • I got harassed by my neighbor constantly all year, up until when I finally refused to take it anymore, and demanded, repeatedly, that the landlord agency do something about it. And finally, they did. I did not let myself get suicidal about the situation.
  • There was stress with my family, but I tried not to let it get to me. I tried to set better boundaries with my mom, and not to be hurt by my dad's lack of interest in me and my life.
  • I was incredibly grateful about my brother's sobriety.
  • I was worried about my sister's depression, so I made her an entire scrapbook of wonderful things about her and mailed it to her.
  • I did my own personal art therapy at home. I didn't have cable TV anymore since early this year, or internet at home, and I didn't let it get me down. I spent time creating presents for people for Christmas, since I didn't have much money to buy them. I enjoyed this.
  • I lived without 24 hour news!
  • I lived without Facebook at home!
  • I used free Wifi to go online when I could (like right now), and I got an antenna from my good friend and her husband so that I could get some basic TV channels. I realized that life was better when I didn't waste a lot of time watching TV.
  • I realized I could live without going to the movies all the time, and I can't afford to go to the movies all the time.
  • I realized that NAMI could not be my only social outlet anymore, and I needed to expand my horizons.
  • I joined a "nonchurch" church. And I like it and feel at home there. I connected with fellow humanists, agnostics, atheists and freethinkers, as well as other open-minded, liberal, socially conscious, and welcoming people there, and I realized that I am intelligent enough to hold intelligent conversations with intelligent people.
  • I was happy a lot after getting out of the hospital in August. There was stress, and I managed the stress.
I am looking FORWARD to 2015!! Happy New Year, and Best Wishes to You!!


Related Posts with Thumbnails