Saturday, September 28, 2013

how the mental health system stigmatizes its own.

I have been working in mental health for about 1.5 years, so I'm fairly new to the field. I guess that means that you can take what I say with a grain of salt. I'm often left questioning many of the decisions that are made around me. The first thing I have to say is the system itself and  unfortunately some of the people in the field stigmatize their own. I often hear words like "behaviors" "redirect" "decompensation". "does so and so have any "behaviors"? Really, that's how we discuss a person with a serious illness? I find this degrading and humiliating. That's something you say about a dog. The same thing is said about "redirect". Can we redirect this person? no, because they aren't a puppy or your kid and it's not something you should be saying to a child either. Not only is it humiliating but it's just not  correct. You will never be able to "redirect" someone with schizophrenia, sorry, but it won't happen. how do you "redirect" someone that hears voices from inside their brain?? This kind training for pavlov's dog is outdated and incorrect. Behavior methods don't work for seriously ill people.
The mental health system doesn't seem to be able to keep up with the new information that is coming by the way of science and breakthroughs. There is plenty of evidence that supports the idea that people with schizophrenia, bi-polar disorder and bpd will have their situation greatly improved by psychotherapy and  treatment teams don't cut it in my opinion. The term mental illness itself has a large stigma around it. what if you changed the name? What if people saw schizophrenia as a brain disease/disorder because that is what it is after all. These "behaviors" are symptoms of a much larger disease. A disease of the brain like MS, Parkinson's or Alzheimer's.
After reading about the closing of Mayview(state hospital in Pittsburgh)  almost five years ago it's clear that many people in the system are falling through the cracks. 15% of all patients at Mayview state hospital are now dead. I'm not a fan of state hospitals they can be horrible and nothing but  warehouses, however, there needs to be a higher level of care. Community living is a nice idea but it's just not realistic for some really ill people. Of course a lot of this has to do with funding but tossing people around like trash is horrible and immoral. How many people from Mayview will end up in jail, homeless or dead in coming years?  We wouldn't do that to someone with MS or Parkinson's.
We always hear why are the mentally ill killing people? Well we know why this happens: they don't get treatment. These are very rare events and anyone with an internet connection could tell you that. The more realistic scenario is the seriously mentally ill going to jail, the street or dying prematurely. I don't think people in the field are bad people, in fact a lot of in the field really mean well, I just think they don't really know what to do and have been taught with outdated ideas. The stigma around mentally illness or should I say brain diseases runs deep and until that changes nothing will improve.
MM

Monday, July 1, 2013

Identity

When someone close to you dies you feel a numbness and shock that lasts for a period of time. Sudden death makes that shock last even longer. It’s unpredictable and the brain can’t make sense of it all. Add on other elements: the end of a family unit, uprooted from your home, loss of possessions. To me it feels like a loss of identity. It’s something that I have been thinking about for a long time. Things aren’t coming back the way I thought they would. It’s like my brain is in auto-pilot. I don’t really feel sad or anxious, I just feel numb. Maybe it’s just that I need more time. It’s only been 1.5 years and all the changes. It’s hard to feel that excitement about life, and pleasure and when I do feel excited it usually has to do something work related, a crisis of some sort. It seems my brain has been reprogrammed to respond to danger or the thrill that goes along with danger. That doesn’t really give me a good feeling since I don’t really like the idea of my life revolving around my work or mental health. I have a hard time separating work and my personal life. I’m on vacation now and I find it hard to relax, to just be, to have fun. Maybe this is all just grief or anxiety and maybe I’m forcing it too much. I feel like I need to always be in motion to help the “cause”. It’s what I think about a lot of the time I feel I need to do something for mental health or visit my dad. It’s hard to take a vacation from a parent and even harder to take a vacation from yourself. Have I become a workaholic? I think I need to find a better work/ play balance. Burn out happens in this field and that’s something I need to try and avoid. When your life revolves around one thing no matter how well meaning it can stop you from doing other things you enjoy. It’s not like I stopped doing things I enjoyed but…. they just feel different than before. I’m looking for that zest for life again. Time will tell…..as always


MM

Sunday, April 14, 2013

Never really one of them…..


I never really felt like I was in sync with the rest of the world. I always felt a bit out of step, a little over here and never really with the flow of other people. Even my own family seemed very far away from me. I never really seemed “one” of them. For the longest time in my life I always wanted to be “one” of them. I thought if I could fit in something would happen, I don’t know I thought I would be happier or something. I listened to advice of others and I never really got it. Since my mom has died a lot of people have given my advice and honestly most of it I found to not be that useful. Maybe I’m just being stubborn or sensitive which I admit I am from time to time. I have also realized that a lot of people say one thing and do another. It’s not really important who these people are or what they said. What is important is that I’m a unique person with my own wants and goals in life. I don’t want what others have and I’m not really a fan of competing with others. I thank my mom for this since she never told me how to live (she did marry my dad, haha) She lived her own unique life doing the things that she thought was right. I also thank my dad too. Without him I wouldn’t know what it’s like to be different and to be not accepted. This may sound negative but I don’t mean it that way. It takes great strength to endure everything he has been through.
I’m a nomad. I embrace that now. I feel close to the sons and daughters, people I have never met. I try to share my story with as many people as possible because I know there are many children and adults that like me had no one to share their story with. At the root of it we are all humans with problems that need someone to talk too. We have the ability with our words and actions to change the world. If someone understands mental illness better because they know me, I will be glad about that.  I try to have a safe/ non-judgmental environment where others won’t be looked down upon. We all have our problems. George Carlin said, “When you are born you get a ticket to the freak show.” We are all freaks in some way or another. I don’t mean that in a mean spirited way. I mean we all have odd things about us; the mentally ill have sick brains. Is that really odd?  I think I’m fine with being a freak now.
MM

Wednesday, March 20, 2013

Filled with Righteous Indignation

As I have posted about before I work in the mental health field. I recently had a situation that kind of ticked me off, ticked is putting it lightly. I like my current job but I work 4-12 and it's kind of tough. I miss out on a lot of activities, friends and other stuff I like to do like acting and watching hockey. So I have been looking for a more normal schedule, 9-5ish. So through some contacts I sent my resume and cover letter to large corporation that is in the city I live. I live in Pittsburgh ( pmuc) rearrange  those letters around and you will get it. So I sent my cover letter and resume in and heard back from these people. Well, not directly but through a contact. They said I had a few typos on my resume...alright and that they were turned off by my cover letter. My cover letter is very personal and talks about why I want to be in the mental health field, about my mom and dad and all that. Turned off?? What?? Over the last year or so I have been on about 15 interviews and mostly everyone said, wow this is what we are looking for, you have passion and glad you turned this into something.

Now why would people that work with the mentally ill be turned off my someone that lived with a mentally ill parent their entire life?? Seems weird doesn't it? Seems pretty stupid actually. Who would know better than someone that pretty much lived in a psych ward for over 20 years?? I thought we were on the same side here? Trying to help the mentally ill, make a difference? I didn't get in this field for fun. I got in this field because my family was destroyed because no one could be bothered to ask a question, hey how is your dad, what about you Mike? How are you? I got in this field to make a difference, to change things. Hopefully.

A few of my goals  after my mom died were to tell my story, hopefully to inspire others like my mom inspired me.I think I have done that. Dozens of people have told me their own personal struggles or their families struggles. I wanted to make it a safe environment for others to be truthful and maybe get help. Something that I never had or my parents had.The second thing I wanted to do is work with the mentally ill directly which I do. Lastly, was to give money and raise awareness to mental health and stigma that goes along with it, which I have.

How is anything ever going to get any better if people refuse to tell their stories and personal journey? What about gay activism and AIDS or cancer, did they stay silent? Let me ask another question? Why? Why is someone working in the field if they are turned off by someone that dealt with it everyday? Stigma in our own field? What is this? Now of course I didn't hear this directly so I could be wrong but maybe I'm not.

I'm tired of this, I'm tired of playing nice. Tired of pretending like everything is ok. When the system clearly doesn't do enough to help these people. I wasn't raised in a Norman Rockwell painting and I'm not pretending that I was and I don't think I should either.All humans have things that make us different. Some of us are born sick or get sick or have problems and there is nothing wrong with that. I'm being honest, isn't that what parents tell us, always be honest? Something is wrong with this picture and I don't like it.    

Mike

Saturday, December 29, 2012

The Holidays Part 2..

so the holidays are over. It didn't turn out as I had planned but it never does, I guess that's just like life, never turns out how we think it will. my dad stayed with me over Christmas eve but it almost didn't get to that point. I called him on the 23rd and he was complaining about his bad back and how he is a "cripple" and is tired. He wanted me to come up to him( I live a hour away). He eventually calmed down and I said I would take him back anytime he wanted to go back. We planned to go out to eat with his sisters on Christmas eve and to my uncles on christmas, I didn't think we would make it to the Christmas day part and I was right. I picked him up around 3 p.m., he was asleep in his bed. I woke him up and we left. He had his bag in hand. He didn't say much on the car ride to the restaurant, he just looked out the window. As I predicted the restaurant was pretty over stimulating for him, he was upset about the long drive. "why can't I be closer?", he said, I told him we are trying and there isn't much we could do, the process just takes time. Some days my dad likes where he is at and some days he doesn't, this was one of those days that he didn't like it. I bought him "real cigarettes" for Christmas usually I just roll them  so we can save money. I went outside with him as he smoked, "you are the love of my life, Mike." I didn't know what to say back but my heart sank. He continued to complain about being far away but my mind was kind of drifting thinking about what that meant? I was mad, sad and heartbroken all in one. People with serious mental illness usually don't hold back and my dad never did with me. I kind of wish he would...sometimes.

We had dinner and it was weird since I never went out to eat on Christmas before, my mom always had dinner at our house. My dad made a toast to my mom, something like."my wife is looking down on us today" something like that, I was kind of in a daze. We finished dinner, opened presents and went back to my place. He liked my apartment. We were watching Miracle on 34th Street( ironic watching it with a mentally ill person). He fell asleep on the couch for a few hours. Woke back up about 12 am had a smoke and some coffee and went back to bed, in my bed which I gladly gave him. 

The next events will be burned into my head for the rest of my life. We walked upstairs and I showed him my room. He laid down in my bed with all of his clothes on, shoes on and above the covers. I said, "dad don't you want to change?". He said, "no I'm fine." I said, "at least take your shoes off." He did. As I was leaving, he said  "Mike can you leave the light on in the hallway and leave the door open." I did and was heartbroken again. He was scared, alone and broken. I felt an unsettling wave of sadness the rest of the night. I was the father and he was the son. I was my mom but she was gone, everything was wrong, it wasn't Christmas. I was so sad a disease had made my dad sleep in his clothes, in my bed with the hall light on. I cried... I grieved for my mom, my dad and me, everything that we had lost all seemed to take hold of me in a matter of hours as I stayed awake during the night.

I felt I needed to double my efforts in that second to make the conditions for the mentally ill better, everything needs to be better, that's what I kept thinking.Seeing him hobble around my apartment, I was saddened because I felt like he wouldn't be around for much longer, he's gone through so much and maybe this is the ending. I don't know but that's what I felt. He slept for a few hours to about 3am, got up had coffee and his smokes(outside). I  was pretending to be sleeping on the couch and he keep saying to go up in my room and sleep, so noble. He wanted to take the couch, so noble. He gives his smokes, coffee and snacks away where he lives..hes a good man and this is such an unfair fate to be trapped in a body that gave out on you years ago. To watch your wife die and be away from your son and daughter for that matter.

I made him cereal and about 5am he wanted to go home, so I took him back. When I dropped him off I said goodbye and I love you, he cried. It felt like another goodbye. I have said a lot of those over the last year. Everything came rushing back over those two days, my mom's death, my dad's illness and the great hole that's in my life that hasn't been filled since all of this. People keep telling me I hope you can find peace but I haven't  yet, maybe more time will help, but I feel like I'm at war. As we have seen in the news recently people are dying because of mental illness, my mom died young and what about my dad? I think they can both be listed in the body count. I think the system is broken, I think we can change that, I think if we have it on our power to make things better, we have the duty to do so. At the same time I know you can only fight so hard and so long before you burn out and get tired. I had this dream a few days before Christmas that my dad was healthy, maybe my hope is just that.. a dream.

So that was my Christmas....haha... Merry Christmas everyone..

Mike McCarthy

Friday, December 21, 2012

The Holidays..

The holidays can be a stressful time for anymore but when mental illness is involved it's always a bit tougher. I have always just kind of wanted them to be OVER. Let's get it done and move on. Not that I don't like Christmas but it's anything but relaxing and it has always been that way. Schizophrenia doesn't make good dinner conversation. My mom loved the holidays and always had our house decorated very nice, but having people over always made me super anxious and I'm still the same way I don't really like having people I don't feel understand me in my apartment and my dad doesn't even live with my anymore. The anxiety really isn't for me because I was used to my dad's behavior but for everyone else in the family. They had no idea how to deal with my dad or what he was like in our home. I was worried how others would react to his outbursts or him talking to himself, you would think this wouldn't make me so anxious since these people were family but to me they seemed liked strangers. I just wanted to say, "can you all just leave my house so I can relax and be at peace." I think my mom even felt the same way, not that she was embarrassed of my dad or anything but just didn't feel real comfortable having others  seeing my dad in an unstable state.


Not that my family had the cops called or my dad was causing fist fights or anything like that, more like something is a little off here and no one is saying anything. One of the things about my dad's schizophrenia is that his cognitive abilities are impaired i.e. he gets things confused a lot, dates are off and asks the same question over and over again. He thinks I lived in New york city for a year, that never happened, I visited new york for an audition( it was about 3 days long). So he is prone to talking about the past, well the past he thinks happened. That can make conversations awkward and confusing for people that don't understand mental illness. The other factor that make the holidays tough is people ask a lot of questions, for someone with schizophrenia that's not really good. It's hard for the unwell brain to process all this information coming at them at once, that can make things unclear and threatening even if it's not supposed to be. Can we also not talk about  controversial topics( not politics, no religion, no money)? My dad is obsessed is talking about money, I have noticed this with other mentally ill people, they seem to always be worried about income which is understandable since they really don't have any. I almost guarantee my dad will ask what happened with my moms insurance money, he asks me this almost every time I talk to him. I say, "dad your brother is taking care of it" "everything is fine." I hate talking about money, I just want to eat my ham and go home..so that brings me to this year.

I'm having my dad stay with my this year, One day over Christmas eve to Christmas day. We will see how this works out and if it can be done ever again. I live in an urban area, somewhere my dad has never lived. He chain smokes and has a broken back so it's tough for him to get around sometimes. I'm really hoping he doesn't smoke in my house or pee in my bed. that would not be good, haha. I'm hoping he doesn't yell at anybody and we can just eat our ham and go home, in peace, well as peaceful as we can be.

Mike McCarthy

Wednesday, November 28, 2012

When Psychiatric Patients Are Also Parents...


by Stefania Electriclady 

...This is the title of the presentation I held at the Milano WAPR Conference, on November 12th. It was the first time I spoke about my experience as a daughter of parents with a mental illness in a public context in my country, Italy. Fortunately the lights of hope in a better future for the next generations and the love that links me to my father and mother, in addition to the strong bond grown in the last two years with the peers I met on the Internet who advocate for COPMI in their countries, helped me fight against my fears and go straight to the goal of trying to give a voice to Italian children of parents suffering from a mental illness.

Everything started back in 2010, when my mother had her third serious manic relapse and I started looking for information on Google. Thanks to my language knowledge, a passion and an ability I inherited from my parents, I had access to many resources that opened my eyes to a new truth that had been lying underneath for so many years: I wasn't the only one and all my feelings related to my parents' illnesses were true and meaningful. For the first time in my life, in my 30s, I discovered I was one of the million Children of Parents with a Mental Illness. I could relate to the stories shared on the net by other daughters and sons living abroad and couldn't hold back the tears. I cried because finally I had found who I was and why I was the person I am. My lived experience had been validated by the stories of others who had decided to share them! It was painful but liberating at the same time. I then decided to do the same for people in my country and thus opened my own blog, "Mia Madre E' Bipolare" (My Mother Is Bipolar), which attracted more than 20,000 visits in less than two years. 

When I was fifteen and everything started to crumble in my own family, Internet was not available for everyone in my country yet. Therefore we were really isolated and lonely in our personal family tragedies. It was really hard or even impossible to vent out and I remember a glassy shell growing around me with which I was still able to "function" in daily life (at school, with friends...) without bursting out in tears in front of other people about what was happening at home, yet with a deep feeling of loss always accompanying me. Internet is nowadays truly making the difference for us all, permitting anyone who wants it to talk to other daughters and sons freely about their experience, without feeling judged or pitied, to share helpful resources and build joint efforts to advocate for the rights of our families and especially for children and teens who often don't have a voice to get the support they need. 

The First International Young Carers Congress, held in Vancouver in May 2012, has been the crowning of the little "miracle" made possible by social networks. I there met for the first time in person Maggie, Melisande, Christophe, Paola and Nerrelle and we presented together about the role of social media for system change. Back in my days of pain and suffering, I would have never imagined one day I would have been flying across the ocean to speak up for the scared young girl I once had been, to use a painful experience as plant food for a future better outcome for families like mine. Face to face meeting with my peers I had until that moment only known online has been an amazing experience that blew my mind and enriched me with positive thinking, helping me pursue my effort once back in my country.

Vancouver is also important as it validated my lived experience as a nonprofit blogger, founder of the first Italian community for "daughters and sons" and the daughter of a bipolar mother and of a father who suffered from major depression as - besides other reasons - a consequence of the negative spiral triggered by my mother's illness. This validation helped me find a "space" to advocate in my own country, as it lead me to the invitation to present at the Milano WAPR Conference in a symposium about Forgotten Children. My special thanks go therefore to Contatto Onlus, a nonprofit organization who got interested in planning preventive interventions in their operating area in Milano. 

It's not easy for me to speak in public in general, imagine about this topic! Also, a great fear was, and partly still is, that my "coming out" could create problems to my mother and my family. Being open about a mental illness in our family is a delicate issue for many of us daughters and sons, that may prevent us from venting out or taking action openly. It took me a lot of time to get to the stage in which I am now, trying to find the right balance to build on this effort and, at the same time, respecting the choices of the people I love and who prefer not to disclose informations about the illness. This aspect may explain why presenting in a congress like WAPR has been such a challenge for me. 

Now that I have achieved this important goal, I may say I am truly proud and happy not to have let fears win over hope. Despite the many difficulties I encountered (stigma, anxiety, feelings of rejection, prejudices, etc.), I feel like I've walked the first of the long series of steps needed in order to enlighten the big iceberg that is still hidden in our homes. We definitely need to bring to the attention of society and policy makers that there is a big number of familes who are yet not seen by services. I am talking in particular about the daughters and sons of parents who aren't aware they have a mental illness and therefore are refusing treatment. I have been speaking to nurses, social workers, psychologists and psychiatrist and even people belonging to family members' associations and it struck me how invisible we are even to people who are starting to become more sensitive to the problem! I heard people say that children of people with psychosis and deliriums refusing treatment are just a few exceptions and I had a hard time trying to explain that the fact that services don't see us doesn't mean that we don't exist. Proof of that is the high number of e-mails, facebook messages and comments on my blog written by daughters and sons whose parent(s) are not in treatment. So part of my effort during my stay in Milano has been pointing out the urgency to find effective ways to reach these children, too. 

Obviously the best way to help them is to also help their parents, but in all those cases in which services can't intervene on parents (as the law states that people can't be cured against their will), we can't leave their kids alone. This does not mean, as some professionals may think, that we need to take these kids and teens away from their mentally ill parents, but that we, as a society, need to offer them tools to cope, become resilient and not to lose their own potential. Therefore I really tried to focus on the urge to translate the existing books for children of parents with a mental illness in all languages, to work with schools, with family doctors and media and start a system change. 

I know it's not something that can be done in one day, but at least we can start. Families who struggle with a mental illness and their children can't wait. Prevention is the key, but in order to prevent we need to build a common language, bringing down the walls that divide us into categories and prevent us from working together for the same purpose. I've witnessed a lot of stigma and reserve and it has not been easy to face them. Still I understand that making people aware of us means for them having to revise a whole system of thought and belief and this may cause defensiveness and denial. 

Talking about my story and also listening to researchers presenting about our families hasn't always been easy, as painful memories often arise from the past and deeply hidden "scars" may reopen. This reminded me that when we are advocating we always need to remember that we have boundaries to protect and that we need to take care of ourselves in order to keep the energy that we need for a longlasting effort. I noticed that this is another key issue requiring our attention, as professionals are not always aware of the risk of emotional draining we are exposed to when participating in these events. 

In the end, I am truly honored to have had the opportunity to give my contribution for children of parents with a mental illness in my country, but, as you can imagine, I can't wait to see the efforts finally turning into Action! I know I'll have to be patient and faithful...but I firmly believe in the power of the domino effect and maybe the first little domino block has finally been pushed. We'll see!

Tuesday, October 23, 2012

Growing up Different

                                                        by Mike McCarthy
I think it’s safe to say that all children with mentally ill parents feel like they grow up different and well that’s because…. it’s true. We face many challenges that others don’t face. We have to play parent, take on added responsibilities and deal with the stress of constant uncertainty. We grow up too fast. We are adults trapped in tiny bodies. I always wanted to be an adult when I was a kid, I don’t know why but I did. When I finally became an adult it didn’t seem that important anymore. Maybe that’s because all those years I had been an adult but didn’t know it.
 
My mom tried to balance all the madness by spoiling me. I never asked her, but I always thought that was the reason. I never had to have a part time job, never had to do work around the house, never really had to do anything I didn’t want to. I was her special boy. She and my dad to a lesser degree treated me like I was special and in many ways I was. The chances of my birth had to be very small. My parents first met before my dad developed schizophrenia, my dad broke up with her and married his first wife. He got sick, his wife left him and my mom returned, oh and he jumped off a building, breaking his back. They got married a few years later and then had me. The chances of all that happening have to be pretty low. So maybe I am special but I also feel an outcast.
 
I remember days when my dad would storm into my room and question me about what the kids at school said about him. “Do they call me crazy?” he said. “Ummm, no they don’t dad, they don’t know you have a mental illness,” I was always secretly worried they would find out since we both went to the same high school but they never did, I don’t think so anyways. I had such a hard time relating to children my age, they all seemed so much like…kids. They were of course and they had childlike innocence, something that I never had.  It’s the price you pay when you grow up in unusual circumstances. I was also a shy child, I hate that word, I prefer introvert, so I didn’t say much to others and kept to myself. I was much more involved with my own thoughts and feelings, so that put me even more on the outside looking in. As I moved to my teenage years I never rebelled like others did, I always say I rebelled against rebelling. I never did drugs or got drunk, in fact I didn’t have my first alcoholic drink until I was 22. That was all kids stuff to me, just a way to mask their pain of their teenage years. Typical teenage angst. I was too good for that, I knew better, I knew it wouldn’t solve anybody's problems, including mine. I guess you could say that was a good thing since I didn’t engage in risky behavior but I also missed out, I was never “one of them” I was just a bit on the outside. Deep family secrets don’t help either. I remember days when my dad would be screaming at me and seconds later I would be outside or going to school, acting like nothing happened and even smiling and making jokes.
 
I became really good at pretending like nothing was wrong. I had a good teacher though; my mom was the same way. She was always smiling, happy and making others feel better. But I wasn’t her because that was just the way she was. I was isolated from the rest of my peers; I had no real companions that I could share my story with, my pain, feelings and isolation. That’s not to say I didn’t have friends I had some in high school, good friends too. Even more in college but I always held back, I was never a whole person. Never sharing the story about who I really was. Maybe that’s why I drifted towards the arts; I could recreate myself every time I performed which was pretty easy for me. Since I did it every day. When others my age were out drinking or going to parties I was thinking about deep issues of the human condition, why I am here? What does it all mean? Is this all meaningless? My brain in many ways developed a lot quicker in those areas but lacked in social terms. I was awkward and anxious and still am. I have terrible anxiety and suffer from depression. I’m sure it’s mixture of my own personality traits and my environment growing up.

So this mixture of being special and different has complicated my life. I never really dated. I didn’t want to bring someone home to all my madness and really, what did I have in common with them anyways? So, what does your dad do? “ummmm, well, he talks to himself all day.” I never blamed my dad, in fact I never yelled back at him when he yelled at me, I knew it was his illness and his chronic back pain, I hoped anyways, but I knew deep down society wouldn’t so accepting. As I have found out over the last few months working in the field: some in society are not. The majority of people still have no idea what schizophrenia is or what it does to someone. They still look at you like your weird, not sick. They don’t seem to have the compassion they would have for a cancer patient, they seem to be too bothered to care. This brings me back to my mom. She cared for my dad for nearly 30 years, took him back  after a broken mind and body and loved him unconditionally when she received at times, nothing in return. This again was something I partially adopted from my mother,never to her degree but to some level and something that set me apart again. Society and even my own family lacked my mothers compassion, sacrifice and open-mindedness.
 
I have always felt torn between two worlds the normal vs the madness. I no doubt have my dad’s brain and hope I have my mom’s heart. I now spend most of my time absorbed  in the madness. I work in madness, volunteer and write about the madness. In many ways that’s where I think I belong on the outside looking in. Never really accepted by the rest of them, damaged and broken like my father, hoping to restore order to my life that was taken from me so long ago. I get along great with the guys I work with probably because I have a lot in common with them. I know their loneliness and isolation and the pain that comes with never having a whole life, never being a whole person. I never really grieved my mothers death, I skipped that step I think. I went directly into action, reshaping my life around a new cause. I never grieved the loss of my dad and yes, it’s a loss, ask any child. I accepted it for what it was, that he could never really help me with my life. What I do grieve I think is the loss of a “normal life” the life that I always kind of wanted. A life I never got.
 
Now I’m here at 25 basically an orphan starting my life over again. Once again setting myself apart from my peers, without parents and working in a field that few understand. My old interests like acting, hockey and movies no longer give me the same feelings they used too. Maybe it’s still all new, maybe it’s too soon, maybe it won’t come back at all. It’s closing in on a year since my mom has died, since everything changed. I think I have made a difference so far, raising money, got praise at work and from others saying that we know the stigma and silence too, but when I go home, at night when I’m most alive.I still feel emptiness, just a bit on the outside. So I push harder like my mom always did, always something more to accomplish, more to do. I know I should relax more but it doesn’t seem right. I deal with my issues with therapy, meds and meditation, but I feel like it’s a war out there. Maybe right now I’m not looking for peace. Maybe one day I will be at peace with all this madness and can be whole for once. Maybe one day I can be the perfect union between the normal(mom) and the mad(dad) world.

Sunday, October 7, 2012

Why I'm Here

by Mike McCarthy


Note: I'm not a real writer and don't claim to be. These are just my thoughts about my life.


The reason I tell my story now is because I'm unable to live my life in silence anymore. Growing up with a father with schizophrenia, I never talked about. Never once. In fact, I spent most of my life hiding the fact that my dad had a mental illness, but my life was turned upside down on December 11, 2011. My mother died suddenly of a massive heart attack that day. Never in a million years would I think that my mom would die before my dad, my mom was so healthy and my dad was..well, not. He smoked three packs a day, survived a suicide attempt from a parking garage that broke his back, a house fire and cancer on his back. My mom on the other hand, never smoked, drank and walked close to a mile a day on her lunch break. As a kid I always checked on my dad to make sure he was breathing when he would fall asleep on the couch, but it was my mom that would die before my eyes. 


I remember the day. I returned home after an acting performance. I remember thinking to myself that something was just a little off about her that night, maybe that's just my wishful thinking that I could have done something different, The last thing I said to my mom was, " oh, I think I hurt my ankle acting", she smiled and I went upstairs to bed. The next thing I remember was my dad calling me. As I played the events back in my head, I remember hearing a thud. That was my mom collapsing. I heard my dad say, "Michael, Michael." He never called me Michael, always Mike, so I thought he was delusional, as he often was late at night. I finally went to the steps and said, "Yes", he said, "mom just fell over." I rushed down the steps, screaming, "MOM" "MOM" "MOM." She was on her side, I thought she hit her head or had some type of head trauma, never did I think it was her heart. I was afraid to roll her over thinking it could damage something. I screamed to my dad to call 911, my mom was breathing but it was just final gasps, seconds later she stopped. The next thing I remember was rage, I punched the floor, the refrigerator and knocked over our Christmas tree that she put up hours before. I couldn't understand how this could happen, so suddenly, without warning. I knew she was gone and she was. They couldn't get her heart to start again. The EMT tried. the doctors tried but she died on our kitchen floor shortly after midnight. I already started to plan on what I would do, where would I go, where would my dad go? Those were my next thoughts after the rage wore off.

I would never sleep another night in my bed, a house that my grandparents lived in for decades and that I lived in for nearly 13 years. That night I left my dad alone, I couldn't stay there, not without her. I remember him asking my uncle, "can you teach me how to do the bills?" my mom was everything to us, my parents were married for over 25 years and after college I returned home to live there as a looked for a career. Now she was gone. As the days moved on a larger picture started to emerge. My parents were in debt and owed money on our home. It wasn't really an option for me to stay there and my dad couldn't either. A decision was made with my family to have my dad live at a personal care home for mental health residents. I told family members what none of them knew, my dad was very unstable for about a decade, at times being physically and emotionally abusive to my mom and I, but generally just screaming at his dead father for hours on end. I was worried that if I stayed there, we would both end up dead and I wasn't my mom, I couldn't take care of him like her. A week after my mom died we took my dad to his new home and without a fight from him either. I thought he would have to be 302'd or try to fight us. He didn't, he yelled a bit on the way up and we had to stop for smoke breaks, maybe he realized there was nothing left for him there. I packed up our home, took all our personal stuff, tossed it in storage and moved in with my uncle for six months. The rest of the contents of the home were sold at a estate sell and a few months later the house was sold too.

In many ways that night my mom died on our kitchen floor, a part of my life ended too. My life was cut in half, a life at home and a life without a home.As we found out in the days and months ahead my mom took secrets to her grave. My parents were in a financial mess, having debts in the hundreds of thousands but as my mom always did, she took care of it. She took out a large life insurance policy on herself and put all the bills in her name.Turning the red into black. She always took care of us, even after her death. She was a hero, struggling for years taking care of my dad in silence without anyone knowing the truth. People didn't know the man she loved so much had a serious disease. My dad's family knew but that's it, my mom's family,  her friends, who knew my dad for almost 30 years had no idea he had schizophrenia. As I sat back this shocked and horrified me. I couldn't accept this.

Why do we hide these things? We can't we talk about mental illness? Why do they have to suffer alone? Why can't we get these sick people, yes sick, proper treatment? The stress my mom was under must have been incredible, supporting my dad and I with only one income for all those years, but the thing was she never complained, never asked for help and was always smiling. Always. She was always happy and never looked stressed, but I think it was there, it had to be.

In many ways I blame the stigma and silence for my mothers death at 59. We can never know for sure, but that's how I make sense out of the senseless. My dad and my mom deserve so much better. Other people need to know what kind of person my mom was. She took her vowels serious, she never compromised, she stayed with my dad until the end, literally. The last thing she did on this planet was getting him a cup of coffee. My dad suffered in silence for years, a suicide attempt in 1981 that broke his back and left him in chronic pain, no one ever talking about "it". No one brought us a cake, no one said sorry about your dad, no one said anything.. 

So that's why I'm here, to tell my story. I decided to work in the mental health field and have been for the last seven months. I joined NAMI and other groups, anywhere I could tell my story and hopefully break the silence and stigma that surrounds mental illness. I found a new purpose in life, a new calling. In many ways the silence and stigma took every member of my family away from me, my mom, my dad and my half- sister who I haven't seen in 13 years. I love my parents, I love my dad, it hasn't been easy being a child of madness but it's who I am. I went from never talking about my dad to always talking about him. That's what he deserves. Hopefully someone reads this and feels like it's ok to talk about mental illness,about their loved one, so it doesn't grow in the darkness,in the silence, where it can do real damage, sometimes the stigma is worse than the actually disease. Hopefully someone reads this and reaches out to NAMI or a co-worker or a friend for help. I'm just trying to find my way in my new world, maybe me writing this can help some other child of madness find their way, I hope it does.

Saturday, September 8, 2012

Memoirs of Parental Mental Illness: Six Picks

by Marin Sardy

I spent this summer stuffed into the lamplit corners of various couches, with my nose in some great recommended reading. Now I offer you my take on some books that deal with the topic of psychiatric illness in a parent. These books are examinations of the way parental mental illness ripples through the lives of the daughters and sons—who offer solace, insight, and perhaps even vindication as they take us with them in witnessing it, grappling with it, running from it, trying to fix it, collapsing beneath it, and sometimes, when they’re lucky, finding reasons to celebrate it. Here are six picks in no particular order.

The Liars’ Club (1995)
by Mary Karr
Nothing on either cover of this celebrated book gives away the fact that it is a memoir of parental mental illness. But this vivid recounting of a raucous childhood in east Texas tightly revolves around the three years during Karr’s youth when her mother fell into an episode of serious mental illness, with spectacularly harrowing consequences. Karr’s mother, she understood, was “Nervous” with a capital N—a term that, she writes, “applied with equal accuracy to everything from chronic nail biting to full-blown psychosis.” For her, this amounted to months in bed and then a breakdown that involved tearing the house apart, burning her and her sister’s possessions, brandishing a kitchen knife at them, hallucinating, being taken “Away” to a psychiatric hospital, heavily abusing alcohol, partaking in various ill-begotten hijinks, and, in the climactic scene, determinedly pointing a loaded gun at the girls’ stepfather while they literally shielded him with their bodies. What’s most astonishing about this book may be that, despite the subject matter, it’s a really fun read. Karr’s loving evocation of working-class Texas, her no-bullshit persona, and her appreciation for her parents’ colorful personalities make it so, without sacrificing a sense of sorrow or clear-eyed analysis.

Daughter of the Queen of Sheba (1997)
by Jacki Lyden
Structured more as a series of essays than as a single narrative, this book peers at Lyden’s mother’s bipolar disorder from several vantage points, revealing its effects on the family across decades. Most of the drama involves the mother’s epic manic episodes (during one, she believed she was the Queen of Sheba), with an eye to more than the financial and emotional devastation they wrought. Lyden has a fierce appreciation for the boundless energy and limitless sense of possibility that embraced her mother during those manic times, as well as for the drive and grace with which her mother put her life back on track after lithium brought her back to her senses. Lyden doesn’t shy away from the similarities she sees between her mother and herself, as she too has led a high-octane life, offering few apologies for being brash and bold and at times a bit out of control. This book is a lesson in the value of finding that balance point in the treatment process—a point Lyden’s mother eventually found, where she could manage her illness while still being herself.

Another Bullshit Night in Suck City (2004)
by Nick Flynn
This is less a tale of healing and redemption than a chronicle of ironies. Flynn’s experimental memoir of coming of age in the wake of a suicide, and floating into a job at a homeless shelter where eventually his deadbeat father turned up in need of a bed—alcoholic, grandiose, delusional, paranoid, and undiagnosed—tracks the young man’s struggles with the emotional forces that threatened to pull him into a similar life. Considering the possibility of offering his own home as a place for his father to stay, he writes, “If I let him in I would become him.” Bearing witness to the frustration, confusion, and agony of watching a parent self-destruct—and the son’s attempts, without guidance, to forestall falling into a parallel path—this book is not widely considered to be “about” mental illness, but it has an important place in the canon of mental health literature.

The Memory Palace (2011)
by Mira Bartok
Bartok’s memoir of her mother’s long, slow descent into schizophrenia reads as a series of impressions, almost like recollections drawn up when someone sifts through snapshots. Lyrical and at times masterfully composed, the book could frustrate a reader too intent on linking cause and effect, but its goals are more poetic than expository. Bartok is interested in finding and illuminating the connections between her formative experiences with a schizophrenic mother and the many relationships in her adult life in which these ripples were inevitably felt. The book’s structure reflects Bartok’s own mental-health challenges and coping skills she has developed in the wake of a car accident that left her with a brain injury that has disrupted her ability to organize sensory input. Taking advantage of this experience, she uses it as a window onto the challenges her mother faced. As an effort to capture the quality of her experiences with schizophrenia, it abounds with resonant moments for daughters and sons.

Mother, Stranger (2012)
by Cris Beam
Published this past winter on Atavist.com, Beam’s ebook is short, and gripping, enough to read in one sitting. The story recounts her memories of her mother’s dissociative identity disorder (DID)—more popularly known as multiple personality disorder—and life with those personalities, from the meek, self-conscious housewife to the brazen prostitute. Revealing the differences between public understanding of the illness and how it actually appears, Beam undermines commonly held assumptions and shows how confusing and disorienting it can be to deal with. Plumbing her long-felt guilt and anger, as well as her profound sympathy for her mother’s suffering, Beam attempts to piece together the mystery of the illness’s origins in her mother, and to make peace with her decision to leave her and live with her father as a young teenager—a move that led to decades of estrangement. (You can buy the ebook for Kindle or other digital formats for $2 at http://www.atavist.com/mother-stranger/.)

Swallow the Ocean (2008)
by Laura M. Flynn
Laura Flynn’s memoir is most memorable when she writes of two legal quagmires involving her mother’s illness that took place two decades apart. The first is an extended legal battle in which her father tries to win custody of his daughters, which is frustrated by the 1970s courts’ tendency to heavily favor the mother. Flynn recounts slowly finding herself trapped with a psychotic mother who can’t properly take care of her, afraid that the delusions and paranoia will turn her mother against her at any moment. She writes with graceful directness about toeing a careful line between pleasing her mother and attempting to escape her grip. Twenty years later, Flynn finds herself in a similar stalemate with bureaucracy—this time trying to find appropriate services when her mother is evicted from the apartment she rarely leaves. What I admire most about Flynn’s writing is that she presents with equal conviction the oppositional (and to me entirely familiar) feelings of wanting to flee from her mother and wanting to help her, without forcing them into a false resolution.


Monday, August 6, 2012

TURNING THE CORNER
Melisande Randall

My mom has dementia now.  I am resentful that after a life time of growing up and under my mom and her paranoid, schizophrenic delusions and mood swings, that now, we are left with the needy shell of a human being.  It is humanity and duty and respect that give me the strength to set aside my difficult childhood past as I change my mother's soiled clothes, help her to the toilet, clean her up, and cook her meals, much like she did for my sisters and me when we were kids.  I have to remind myself that Mom "wiped your butts" as southerners love to remind children of their duty to take care of the older generation.  My mom cooking and cleaning and running errands has got to count.  Her motherly duties fulfilled have got to matter.  Do I really need to think of this as being "my turn" to reciprocate the favor of being raised?  It is simply the course of life.  We do for our family regardless of who came first into existence.

But for some reason, no matter how much I count the blessings and positive things from my childhood, like mom showing me how to cook, and mom driving me to school though oftentimes fussing about life to the point I was bolting out of the car to escape her tirade, and mom treating me like a doll in college, coming to class sometimes to take notes for her half-blind daughter...no matter how much I live these highlights, why do I cringe each time I walk up the street from the bus stop and reach my mom and dad's avenue?  Why do I hesitate and get resentful as I reach for my keys to open the front door?  Why do I plan in my mind just how fast I can come in and bring dad his paper and cook a meal and do my mom's medications and clean her up just in enough time to get out of there in ninety minutes or less? Why am I just going through the motions?  Why don't I feel joy in helping the two people who did more for me than any other two people did in providing and caring for me?  Why can't or won't I let my Christianity supersede my pain?  Forgiveness is letting go...but for some immature if not selfish reason, I can't be grateful that my mom is still on this planet.  I feel awful typing that.  I have friends who have lost a parent.  I could cry admitting how honest I feel in sharing this awful thought.  Why do I feel this way?

It goes further than the fact that Alzheimer's Disease leaves its victims in a vegetative state eventually.  My mom is just a step above that.  I don't like to see it now that it is getting severe.  But I think that beyond the loss of dignity as one loses control over their bodily functions, I am not happy that my mom never got treatment and that she lived life without knowing how happy she could have and should have truly been.  Undiagnosed and untreated until we learned she had dementia, here we are having gone from the transition of schizoaffective disorder, straight to dementia.  I feel like now, what is the point of it all as Mom can never be treated for the former disorder and know its benefits.  So what is the point now?  Excuse redundancy as I have to repeat things that resonate with me while I write.  I feel like we in the family have all been cheated but it is not my place to say who should or should not still be here on God's green earth.  I think God wants me to come to terms not just with the fact that my mom was ill and did some pretty awful things that she probably could not and refused to control, but now, He also wants me to accept this Alzheimer's thing.  Why do I have to accept all this stuff?  It is selfish because people have to accept all sorts of things like cancer, death, drug addiction, and abandonment. But it just seems extra cruel and challenging to subject children to the lessons of being raised by mental illness, and then have the affected parent, move right on into a state where they don't even remember all the crappy stuff they did!  Why am I having to come to terms with this?  I know it could be worse....BUT WHY WHY WHY?

So when   I stop and hesitate as I walk down the cross street perpendicular to the avenue where I grow up, I have to swallow a lump that rises in my throat each and every week that I come to my parents' to fulfill my care giving duties and I think of my care giving visits as taking yet another plunge off the deep end diving board of a pool that I do not like to jump into.  What mom and dad did for me has got to count, it has got to matter. But apparently, the negatives outweigh the positives.  My parents fought daily as I was coming up.  And their arguments were loud.  And I left for school a nervous wreck virtually every morning of my life and I returned home with this sinking feeling that there would be more fighting between them when I got home, and guess what?  I was almost always right, like 95% of the time right, maybe even 98%.  I endured a lot of unnecessary verbal and physical assaults as my mother's frustrations got the best of her.  It was unreasonable, unkind, and deep cutting.  Daddy did the best he could to protect me.  But unfortunately, it wasn't enough and it sure was not successful.

My dad is in a wheelchair now.  He still has his faculties, but he is defeated by a life where he repeated the patterns of his own upbringing by a schizophrenic mother and alcoholic father.  How did he somehow manage to marry a woman with a mood disorder, and then let himself, succumb to the powers of a bottle in order to cope just like his father did?  My mom, she is almost unable to walk and her eyes are clouded over as the medications keep her sedate so that she won't be combative each and every time we need to bathe her or sit her down to eat.  The medications are totally necessary in my mom's case but her once darting and sharp eyes, are now dull and unsettling.  I get a smile out of my mother once in a while and I think that is one of the few things that helps me turn the corner and walk four houses down to the home that I literally thought of as a prison when I lived there.  I have to bring back memories of my mother's gardening skills that brought forth colorful roses, and bountiful fruit trees, and fragrant foliage.  She channeled her energies into such wondrous creations.  But now the lawn is halfway dry and the flowers that bloom are only doing so as nature has its way without the guidance of my mother's hands and clippers.

I think of the smell of fried chicken and boiling greens and baking corn bread when coming home as a child....but now, when I open the door to the back porch, I am overcome by the fumes of piss and garbage.  I remember my mom wiping down walls when I now clean and wipe up what she no longer can.  And so I know my mom kept a clean home when I see things in disrepair.  She prided herself in holding that house together and keeping it spotless.

Sometimes a blog has a really distinct message or a really thought provoking story to relay.  But today, for me, I just needed to vent a little bit because for the past two years or so, I have forfeited church on Sunday mornings to pitch in at my mom and dad's house because they are in failing health.  I am needed two mornings a week and that really isn't that much, but for me, it is so draining and it is so hard for me to turn that corner as I am walking towards the home of my childhood.  I have to hold on to memories of normal things like plants in the yard and Mom's meals being prepared...that aroma which  neighbors could smell cooking up and down the avenue.  If I don't remember the things that gave me a sense of normalcy, then I won't be able to do what I do.  I have told family members that it is not out of love, being a parental care giver.  It is as I have already admitted, out of a sense of human need and respect, and maybe even appreciation for how I was cared for in the ways my parents only knew how.  But I have a hard time bringing love into it.  Nonetheless, I still hope that humanity and respect and duty count for something.


Saturday, August 4, 2012

Dispatches from Dreamland

On finding—and not finding—my mother
by Marin Sardy

29 July:
Outside the air is thick with mist, a mist that winds through the low green islands across the channel. The town of Ketchikan, Alaska, is wrapped in a light rain that doesn’t fall so much as it materializes out of the air, making the place feel a bit like the inside of a snow globe. I have a sense that this is its own world, separate, secret. It is easy to see why it might appeal to my mother, who lives here now.

Two days ago I arrived in Ketchikan, which is remote and accessible only by boat or plane, hoping to find her. I hadn’t seen her in about twenty months, and hadn’t spoken to her since Memorial Day of last year. Now I was coming to visit her and I hadn’t heard back from the letters I’d sent. I could only assume she had received them and was waiting for me. For weeks before I flew in, I fretted about her silence. Since she has no phone, I sent her four letters in three months telling her I was coming to see her, providing all the information I could think to hurl at her. Flight number, arrival time, hotel location, departure date. Mom, I’m coming. Mom, I’m coming

But no response came for any of them. As the time grew closer, I told myself it didn’t mean she wouldn’t be here when I arrived; most likely she was getting ready for me and looking forward to it. This is her way. I can’t count how many times I’ve prepared to go see her, whether in the same town or not, when the closer the time came, the more she backpedaled. “I’m not sure it’s a good idea to come over now,” she’d tell me. “It’s getting awfully late in the day.” Or, “Are you sure you aren’t too tired? Maybe it’s better to just skip it.”

I’ve made a habit of dodging or just pushing past these objections, knowing that she’d be happy in the end if I just stayed with it. Still, the ritual touches a deep, old fear. As a child I often had a sense that she forgot about me when I wasn’t physically present, that she lived just a step away from deciding not to bother with this whole mother-daughter thing. I suspected that even if she enjoyed being a mother, maybe she just didn’t quite enjoy it enough. She always seemed liable to slip through my grasp. Her mind was perpetually somewhere else, and often she followed these thoughts to distant places she barely spoke about when she returned. North Africa, Europe, New Orleans, Hawaii. I sensed she could flee at any moment, be gone. And that’s how it was whenever she left town—usually for only a week or two while we were staying with our father, but once for six long months. She wouldn’t mention she was going anywhere and then would call from someplace far away. She could evaporate like that. And I, her nervous second child, was never certain she would still be here tomorrow.

Now, as an adult, it’s obvious to me that she was devoted to us, and that being a good mother was by far the most important thing in her life. But it wasn’t obvious then. I took for granted the million small ways she cared for us, however haphazardly.

But despite my mistrust, she always came back, so I knew it was unlikely that I would come to Ketchikan and find her gone. Yet the possibility, and the absence of any response letters, ate at me. I would be stuck here alone for four days if she wasn’t here. The hundreds of dollars it cost to get here would be wasted. I was too anxious even to get angry at my mother for making it so hard.

I looked for her in the airport and my stomach dropped a little when she wasn’t there. So I made my way to the hotel and, as I was waiting to check in, I turned and saw her through the large plate glass window, walking on the other side of the parking lot. She walked toward me, not seeing me, then veered into a coffee shop. I started bouncing around in agitation, and she popped back out and turned toward my hotel, but then stopped and headed in the opposite direction. Afraid I was about to lose her, I asked the boy at the front desk to watch my backpack before bolting outside, calling out to her and hopping the landscaped traffic berm to get to her.

“Oh Marin!” she said, turning back toward me and looking flustered a moment before breaking into a smile and opening her arms wide for a hug. “I was just trying to decide what to do.”

* * *

30 July:
Over the three days my mother and I have spent together, walking the streets in rain jackets, pausing at gift shops and totem poles and whatever strikes us as interesting, I’ve begun to feel that she has slipped further away from me in the time she’s been alone here. In more than a year she has had no visitors, made no friends. Inside her own head uninterruptedly for so long, her delusions have pushed out more memories than ever. 

Earlier, as we sat together in my hotel room, intermittently chatting and watching TV, she said to me, “Marin, where did you grow up?” I stared, feeling something rising in me. When I answered, my voice was demanding and maybe a little bit pleading. “I grew up in Anchorage,” I said, and in the pause before she replied I felt all the bafflement and unknowability of schizophrenia pressing into me, compressing the air. “Hmm,” she answered. “Well I guess I knew that.”

I have rarely spoken with my mother about my childhood. The main reason, I think, is that her illness, unacknowledged by her, was the force behind most of its miseries, and for many years I couldn’t see past that. But on this trip I brought some old photos I found in my father’s house, images of my Alaskan youth with my siblings and with her. There was a small square photo of my younger sister and brother in the driveway by their tricycles, looking about four and five, standing together as if powwowing. There was a picture of the four of us in winter hats and puffy coats, leaning into each other in the white yard, our jeans caked with snow. There was a shot of my mother and the four of us, all quite young, on a white front porch. We were dressed in red and she stood behind us, slim and grinning. When I showed her this one she studied it for a few moments before declaring in utter surprise, “Oh, that’s me!”

“And there you all are,” she continued, “Alicia, Marin, Adrienne …” It was as if the existence of that whole world had suddenly reasserted itself in her mind, after a long slumber. I realized how rarely she thinks of our origins, and the fact that I came from her. Perhaps, it strikes me now, she doesn’t know all the time that she raised me.

Looking around her little apartment, I notice there is nothing in here that is more than a few years old—if that. She so regularly purges her belongings that in her life now she comes across no real evidence of her past. Everything is bright and novel, the reflection of this moment’s fascination. Right now it is Alaska: She’s got a stuffed bald eagle, socks stitched with forget-me-not flowers, and a salmon refrigerator magnet. In her daily life she sees no artworks her mother gave her, no mementos from old travels, no dishes used for decades, no baby pictures of me or anyone.

I call to mind that several years ago she began telling me I was “a good friend,” and asking me if I might call her by the new name she’d chosen for herself, Mara. “I’m just gonna call you Mom,” I said, annoyed. Only now does it hit me that maybe this was the beginning of a process through which our mutual past—the one in which she was my mother and I was a child; the one in which she brought me up and protected me as best she could—came to be shrouded in a foggy landscape in which only occasionally does the truth peek through.

Off and on for more than an hour, she describes some of the things she thinks about in her free time. Her delusions are as elaborate as ever, and as hard to pin down. Listening to them is like following along as someone recounts a long, meandering dream. The details don’t stick, I find. Without the laws of physics, or often any hint of metaphorical significance, I have no organizing principle to which to attach them and hold them in my head. My mind begins to wander after a few minutes. It’s hard to pay attention, to engage with them and their mysterious logic.

I sometimes resent her delusions for pushing out the story of our past—for supplanting the days in which she stuffed me into a snowsuit and propped me on a sled, and the many times she repeated this ritual over the years. The richness of our life back then. But I would resent her delusions much more fiercely if they weren’t what provides the richness of her life in the present.

“A glacier,” she tells me on a walk, “is an animus that reaches out to the things that belong to it—like ice tunnels.” She points to a long cement traffic tunnel through a gray cliff, saying, “That’s an ice tunnel. It looks like cement, but…” She goes on to explain that this tunnel is actually made not only of ice, but also quartz. I consider this. Then I picture what I know to exist: huge glaciers, ice fields, slowly churning down their chasms, poking tongues into mountain valleys, claiming their space in the world and reshaping what they touch. In a way it seems entirely true that a glacier is an animus. I step into the fog of the delusion, get lost in it for a moment, step out again. And in the space between the sense it makes and the nonsense it is, I think, Yes. Okay.

Monday, July 9, 2012

Professional Conference / Emotional Connections




by Melisande Randall

It has been two months since I attended the Child and Youth Mental Health Matters Conference in Vancouver, Canada.  Are you ready for a mouthful?  The conference actually had three in one titles as it was three conferences in one:

First National Parental Mental Health Conference
First International Young Carers Congress
Third International World Congress on Children of Parents with Mental Illness.

Needless to say, it was the third segment that most caught my attention.  Since 2008, I have been connecting with friends on Facebook, colleagues. sons and daughters, and now people whom I refer to as my brothers and sisters in the cause, who are all trying to deal with the issue of growing up and under a family member with a mental illness.  Through the creation of my own group: Adult Children of Parents with Schizoaffective and Other Mood Disorders on Facebook, it opened the door for me to reach out and find others in mental health groups that all offer a perspective and forum for those of us trying to make sense out of a childhood that was affected my someone, usually a parent, who just was not well.  But beyond telling our stories and offering support, many of us are resilient enough, educated enough and now brave enough to say to ourselves, "Where do we go from here once we have told our stories?"  And that is why I decided to address the title of this blog...professionalism and emotionalism.

Thanks to Maggie here at this forum, and others who I won't mention for the sake of privacy, the Crooked House and other Facebook groups posted and shared this Mental Health Conference event that was held just this past May.  From late last year until the conference began, I had to assess who I am and what I do in my spare time as an adult survivor of toxic parentage.  If I were to attend, what would I say and what could I offer?  Then, I had to prepare myself to meet a group of colleagues from all over the world who only knew each other from photos and words printed on a page as we decided to come together as a group and present how social media can affect policy change and research agendas in the field of childhood affects of parental mental illness.  I had to immediately forget about money, time, fear, and stigma in order to focus on how to make my life experiences count towards something that can bring about real change and not just healing. 

There are three things that came out of this conference which stuck with me the most and although I did not expect to cry, of course I did.  I had in my mind that a professional conference would have to be a place where you put emotions aside and talk about statistics and theories and laws concerning the issues which had to be sterilized in order for us to get to the task at hand and share and disseminate information in an educational and formal and professional manner.  WHAT WAS I THINKING?  First of all, emotions could not be taken from the equation of what took place at this conference.  Secondly, validation can be the most valuable outcome when coming together with friends and strangers who share your pain and understand your history.  And thirdly, we need a global mission.

1. EMOTIONS

Why do we act like emotions are taboo?  Why is it that we have to set aside a time and a place where emotions are appropriate?  Why do I feel less a woman if I cry in front of my students because I am having a bad day in the classroom?  Why can't I cry silently during a professional presentation if a chord or nerve is struck?  Why are we so worried about how uncomfortable our emotions make others feel?

At the opening remarks, there were three research specialists who talked about their family history and what led them to the fields they work in as a result of mental illness in the family.  I cried hearing each one.  Was it because this was that type of conference where there is no way to separate the emotional connection from the topic?  Like cancer research or the research of any disease, people come together at conferences to find out what's new in the field, and then, there is always someone who is affected by the disease, and they feel the emotion.

I am both embarrassed and proud to admit that I cried hearing the stories of older men with grey hair and credentials.  I was touched that each could open up their lives and personal experiences and photo albums and put a face to the subject matter.  It took me months on Facebook before I felt brave enough to post my mother's photograph.  She never would have approved of it prior to the onset of dementia.  But I have to believe that now she is undergoing treatment, that her spirit and consciousness are free and hovering over me and letting me know that it is OK to talk about the pain as long as I talk about the healing and we help make way for social change.  These presenters wanted the audience to know that they had a direct connection to the subject matter.  And they wanted us to know that they were done hiding behind the stigma.  And they wanted us to know that it is time to address the needs of the children and it is a societal and governmental and institutional obligation.  We need emotions to fuel change.

2. VALIDATION

I have talked about my need for validation most of my life in therapy in order to realize that what my sisters, dad and I went through with our mother/wife, was not imagined nor exaggerated.  I remember in middle school, seeing a fellow student's mom come to campus to visit her daughter who helped choreograph our dance core routine.  I remembered that this girl was not a very attractive female.  She was tall, incredibly thin, and her face looked sunk in and I always wondered if she was ill.  But she could dance and her mom came up to school to watch her daughter perform and lead us.  After the performance, it was lunch time and the mother and daughter walked across the field and their arms were around each other's waists.  I remember staring and watching them walk across the PE field because I was mesmerized by the outward show of affection.  And for me, this was just a phenomenon.  I saw people hug their kids on TV, but at age 12, for some reason, I just thought that Hollywood candy-coated everything to look extra special on TV but I honestly did not know, at that age, that mothers and daughters could kiss, hug, touch, or be arm and arm and display love IN PUBLIC.  In my case, it was not demonstrated at home like that either.  Love was shown by what my mom cooked for dinner, and by what bills she paid to keep us afloat, and by her laughter when she appreciated one of our jokes.

But screw all the sweet and fluffy stuff.  My childhood was filled with more slaps, and scoldings, and belt threats, and curse words, not just between me and my mother, but also between her and my alcohol abusing father.  The majority of my young life was spent in a household where my mother's screaming fits came from an unexpected place.  My mother threw things to get her point across.  My mother's dark eyes turned shark-like when her episodes began and we closed our room doors as she ranted and raved about how jealous her daughters were of her and how her husband was more in love with his daughters than he was with her.  And there was guilt and shame and water glasses thrown, and garden hoses turned on me when my bike wheels touched mama's grass as she was watering and gardening.  I could go on and on.

Validation came when I wrote my book, but it came even stronger at the conference when I met my friends on Facebook FACE TO FACE for the first time after sharing tales and articles and letters for 3 - 4 years.  I met friends from Australia, Canada, Italy, my own US of A, and then listened to presenters from the Netherlands and UK and knowing we all had this THING in common was so reassuring.  We all survived a chaotic childhood.  Some of us had some supports and some of us had none.  But meeting my social network friends and colleagues for the first time in person was just heartwarming.  Looking into someone's eyes and knowing you didn't have to say a word about what it was like to have a schizophrenic or bipolar mother because you just look in that person's face and you connect and feel and understand because you let your barriers down. And just to KNOW that WE KNOW what it was like to grow up confused and feel emotional abandonment, to see a mom or dad hauled off to a psychiatric hospital, to heal from a beating, to overcome instability, to hide shame, to overachieve to make up for what was effed up at home, to convince our friends and teachers that everything was just fine when it was far from it...that was validating.

I listened and spoke with my new found friends over lunch, dinner, wine and coffee.  There are so many of us affected by mental illness.  There are so many of us who needed help.  There are so many of us picking up pieces.  There are so many of us with family members still in denial, even if a shared ill parent is deceased.

So, I walked away from the conference with validation and I am still wearing it like a badge.  I recently spit out the truth at my aunt and uncle and sisters who all know that something was wrong with our mother but just act like it is pointless to discuss.  But they may not feel comfortable with the baby sister roaring out about the pain and the secrets and the therapy sessions that took place when not even college friends were told where I was going on campus for an hour a week to keep from losing my own mind.

And validation came at the conference when the academic researchers talked about pets adding something to the healing of the wounded child.  I wrote about that in my book without any research needed.  Validation came when we were told to share our stories because story telling is reality.  And that is why Crooked House is here!  And validation came when I left to fly back home to Los Angeles and realized that I never needed one psychology class to explain why I was the fragmented yet strongly glued together woman I am.  My experience had made me more than an expert in the field.

3. GLOBAL MISSION

A group of colleagues sat in a hotel room the eve of our presentation at the Child and Youth Mental Health Matters Conference.  I believe it was May 7, 2012.  Just like Civil Rights, Women's Suffrage, AIDS Awareness, and all the myriad social issues that have taken time, sacrifice and political shifts to achieve, HERE WE ARE.  A group of people saying that it is time to recognize Mental Illness as a social issue that is long overdue for recognition.

How do we make a topic matter to a world where stigma exists?  How do we make governments recognize the needs of children whose parents are probably not even well enough to seek treatment?  How do we give kids a place of refuge without getting them into trouble with family member who don't understand?  How do we get money to treat the ill and their families and not let them get started and then lost in bureaucratic madness?  How do we make ourselves equal when we are the sons and daughters of the mentally ill?  Why are we talking about this now in 2012 when people have undergone exorcisms for centuries when all they were was sick?  How do we make The Church view mental illness like any other physical illness and not view it as some form of sinful state of being?

I ask better questions than I offer solutions.  I refuse to feel guilty about that because at 45, I just now know that I can come out of my closet.  I can stop kicking myself for dumping all the journals that kept me hanging on as a kid.  I can pat myself on the back for creating a group and writing a book and talking openly in forums about my dysfunctional family and my own self destructive tendencies.  So I won't fret about not having answers yet as to how to get started. 

But I am writing and I am ready to talk and I want to be heard.  I want to do my part however small.  Grassroots start with the strong, the weak, the scared, and the meek.  There are followers and there are leaders.  We need both.  We can't be picky now.  We just need to mobilize.

Thank you for reading.

Melisande Randall
Author:  Under the Invisible Umbrella:  Surviving My Mother's Mental Illness
Chipmunkapublishing.com & Amazon.com

Melisandewrites@twitter.com