Desperate for Change

Last year, around this time, I presented on mine and my daughter's struggles with the mental and physical health system to a group of community leaders in my county.  At the time, I didn't post my speech, but am posting a hybrid that adds and subtracts a bit after a year of reflection and another year of things only getting worse.  

I am a person with mental and physical disabilities, who has a daughter who also does and who has worked for almost 20 years with people with disabilities who have also struggled with the mental health system. For the past few years, my lifelong depression has increased in intensity along with PTSD and extreme anxiety. One of the things I struggle with the most is conveying my struggle to others.  It's sometimes easier to talk about my ongoing pain, but when I try to talk about my depression, I often feel shut down and misunderstood.  Sometimes it feels that no-one wants to hear it.  Like my chronic pain, it does not seem curable and this frustrates people who want to fix my pain.  Depression feels like a slow slog through a darkness where it seems impossible to reach out, and often impossible to live another day even though I know I must.  And when I do reach out, I feel like I have had doors shut in my face because the 'treatment' that's out there has not helped my chronic pain or my mental health issues. I feel the burden is mine alone to carry with very few answers. In fact, knowing the ins and outs of the system due to my career is a bit of a curse because I know all the limitations of our current system..  For both my daughter and I, who have both hit dead ends, this life without hope for a better future is both debilitating and lonely.  It is not for lack of trying, but when one suffers from baffling and debilitating conditions, the constant struggle of reaching out and falling back down gets exhausting. I do try, but I don't know if folks who haven't been there understand how hard it is to keep trying.  

I struggle with telling my own story because the judgment towards mental and physical limitations is still very much a constant in our society.   We value productivity in our society so intrinsically that when one cannot work, it is hard not to have an added layer of shame.  Somehow, in my own depressed and irrational mind, I also feel like I have failed my oldest daughter because she, too, cannot seem to move forward in a traditionally successful way or find help for her ongoing medically baffling issues.  I do hope that sharing my story helps others who are in similar situations, so I keep trying.  

Do conventional treatments work? Sometimes.  Are they easy for most people to access? Almost never. From early childhood, I struggled with depression and anxiety. After great trauma at age 16, my depression became so severe that I stopped eating and almost died from starvation. My parents, who were certainly good parents, did not get help until I was close to death due to the shame, stigma and denial. I was eventually hospitalized.This hospitalization traumatized me in many ways. The treatment was mostly behavior modification treatment and felt extremely punitive. It made me feel worse about

myself than I already felt. I received the little real ‘treatment’ here. The only thing it did for

me was leave me with a determination to change the system, to never be hospitalized again

and left me with a deep distrust of medical and mental health providers.

Fast forward several years and in one very abusive dysfunctional relationship when my oldest child was born. Imagine trying to recover from your own trauma from an abusive relationship with a person with significant mental illness, while also struggling with lifelong depression and having a child who has extreme mental distress from the time of birth.  Imagine trying to find treatments that work for her only to hit dead ends. To watch this child escalate into terrifying explosive behaviors and extreme emotional distress in adolescence. To reach out for help through crisis lines, clinics and more only to be told: ‘you have to wait at least 6 weeks for an appointment with a doctor’ or basically getting very little true help. To have to tell her much younger sister that there are no magic answers and that we just have to survive through this chaos with hope that maybe someday we will come upon something that will help. And to explain insurance to this same sister and the fact that money and type of insurance limit the amount of care and types of treatments her sister can get. Imagine watching this child grow into adulthood, experience ‘mental health holds’ where she went in desperate for help and got little treatment and no follow up.  Imagine seeing this child find the only med that helps the most severe part of her illness and see that med destroy her quality of life through chronic ongoing fatigue.  Imagine going to doctor after doctor trying to get help to address these physical and mental health issues only to run into doctors who saw her for short time periods that never looked at the whole history or took the time to really figure out the best interventions.  Imagine knowing that this brilliant creative child’s dreams have been scaled back to just surviving through another day. This child is trying to heal. This child is trying to love. But she has been failed by our system. Over and over again. 

Imagine once you can breathe a little being hit by your own unhealed issues. PTSD, depression, chronic pain and other physical issues , most, a product of abuse suffered many years ago.  Imagine trying to find help and finding few doctors that understood chronic pain and being dismissed because of your history of mental health issues.  Knowing that your pain is interlinked with your mental health and past trauma but finding few providers that know how to address this. Imagine having physical conditions that preclude the use of psychiatric and other meds, but finding out that most providers see meds as the only tool in their tool box and don’t seem to understand that meds don’t work for everyone and that side effects are worse when one has certain physical conditions.  

I am trying to recover in the face of these obstacles. My daughter is trying to recover in the face of these obstacles. But, we are not finding the help we need and due to lack of money and type of insurance, we are stuck with limited options. 

We need a system that has long term transitional options post-crisis for people that desperately need them and respite for families who are enduring the day to day struggle of living with someone with significant mental health issues. We need a system that understands the interrelated connections between physical and mental health issues and treats both with respect. We need a system that has true coordination with all medical and mental health providers to treat the whole person rather than separating body and mind. We need a system that truly understands and knows how to treat trauma. 

We need a system that, instead of penalizing people that are unable to make it to appointments due to physical issues, works together with them to find a way to makes things work. We need a system where front line people who like receptionists, police, hospital staff are well trained and know how to treat people going through crisis with deep respect. We need a system that doesn’t shame people for trying alternatives when conventional methods fail to work. We need long term and transitional housing options for people with psychiatric disabilities. Trying to heal when one is homeless is next to impossible. We need workplaces that destigmatize mental health issues and work with people to ensure equal access for all disabilities including psychiatric disabilities.  We need a system where people experiencing extreme mania or psychosis are treated with dignity rather than being turned away or treated in a punitive manner. People experiencing these issues should be treated no different than someone experiencing an acute physical crisis. 

We need a system that supports the whole family of someone living with mental illness and gives them real solutions. We need a system that sees ALL people as contributing members of society and encourages participation in work, volunteering, etc rather than enabling isolation and segregation. Finally, we need a system that treats each individual with deep respect and dignity and does not look at those with mental illness as ‘separate’ but rather as fellow human beings. People need to reach out and include us rather than avoiding us and avoiding talking about difficult issues. It needs to be understood that so many of us are out here trying everything we can just to live another day, hanging on by a thread and hoping beyond hope that things will get better. We are your sisters, your mothers, your brothers, your fathers, your friends, your coworkers and we are people who deserve respect, connection, friendship, love and treatment that works, that is individualized and that is easy to access. Most importantly, we need hope and as it stands now, that hope can be hard to come by for many of us.  

We Must Demand Better

There is nothing worse than watching someone you love deteriorate with an illness for which there is seemingly no cure. With a loved one, I am currently watching a nightmare that has unfolded for many years.  No-one else realizes how many things this loved one has tried to get better or that everything tried has failed. Watching her suffer has filled me with a sense of hopelessness and an even greater skepticism about our medical system. 

It is 2014, and one would hope we had better medical and mental health treatment; something that could give hope to those who feel hopeless.  But, the reality is that for many 'disorders', there are no good answers.  For 'invisible illnesses like Lyme Disease, chronic fatigue syndrome, fibromyalgia, all major mental health conditions, and many others, the treatment is guess work, at best.  People with these illnesses often feel isolated, hopeless and stigmatized.  I don't see people organizing meals for them or their families when things are particularly bad.  People with these chronic conditions feel great shame at having conditions that no-one knows how to treat.  In fact, many of the so-called 'treatments' that are tried actually end up making them feel worse.  Their ability to do basic activities is obliterated and yet, many judge them for having diseases that aren't visible, that aren't as easy to define as things like cancer or heart disease. 

Although I, too, suffer from an invisible illness, it is far worse to watch someone I love go through this torture.  Watching my loved one suffer with no hope in sight beats me down to the point of extreme hopelessness.  It is incredible how many people I have met who feel the same way; who have loved one's with various conditions who are not getting 'better'.  These families do everything they can to help their loved one in a system that is broken, that rarely has any answers.  Many wrongly assume there is good 'treatment' out there for some of these conditions, and they judge the sufferer or their family members for not 'getting' enough 'help'.  Believe me, if you were in 'our' shoes, you would know that all we do is try because to stop trying would mean giving up hope.

Perhaps the most frustrating thing is that we loved ones and sufferers alike have no energy left to fight for better treatment.  Everywhere we turn we hit brick walls until we are are left so beaten down that we can barely move.  This is unacceptable.

As a nation, we should be better than this.  It is not o.k. when I hear a story about a young man who cannot get help because the 'treatment' is sub-par and he is turned away because he doesn't fit the mold of whatever 'program' there is to help him; who is just too difficult, and thus, forgotten and left to die.  It is not o.k. when I hear of a friend who died of stage 4 lung cancer; who had a diagnosed mental health condition and all of her physical symptoms were ignored for months because the doctors thought she was 'just crazy'.   It is not o.k. when a young person I know is treated with medications that are doing more harm than good, when there are no good alternatives and no answers and she is left without hope to potentially die.  It is not o.k. when countless people with various pain, immune, mental health and fatigue disorders are left behind by a system that is just too baffled to put resources into helping them.  So much promise, lost.  So much hope, gone.

For our love ones and for those suffering, there must be a change in our attitudes.  We need to stop offering 'helpful' tips when someone talks about their chronic pain, mental health issues, fatigue, etc.  Those suffering have heard and probably tried every 'helpful' tip you have to offer.  We must listen to and support families with chronic mental and physical health conditions.  Often, all that is needed is a listening non-judgmental ear.  Don't assume that if someone 'just got out more', or 'got a job', they could get better.  Many who suffer would love to be able to do work or socialize more, but they really can't.  Do not question their reality.   Most importantly, remember how much families and the sufferers are being tortured by these ongoing problems.  Offer practical support, offer emotional support and most importantly, drop your judgments if you do not understand.  

Finally, we must demand more options, more research for 'help' that really works.  We must crawl out of the holes that we have been forced into and fight for change.  Our system is not working for far too many people.  Something is horribly wrong.  We need help.  We need others, who may not suffer or even know someone who suffers from these disorders, to stand with us.  We need others to help us band together and come up with creative solutions.  Western medicine has been proven very effective for many conditions, but for some it is sadly lacking.  Doctors must open their minds to creative and holistic solutions and actually see that some of the 'treatments' they prescribe are often worse than the disorder they are treating.  Our whole model of 'treating' people needs to be turned on its head to understand and actually, help people with these conditions that are, at best, baffling. 

Currently, my loved one has barely any life at all.  Each day is excruciating torture due to physical and mental conditions. This person has tried treatment after treatment to no avail.  It breaks my heart when every day is the same nightmare for this person.  I cannot give up hope that he/she can truly live, love, laugh and dance again. I am astonished daily at the number of people in this country that are experiencing this same nightmare with us. We cannot let these lives that could be full of promise and joy fade without a fight.  We have to band together, families and sufferers and push forward.  We must demand better.

Still Angry

There is a lot to be angry about.  A mental health system that is so broken that it rarely helps people recover and at best helps people maintain 'stability' instead of pushing people to be their fullest selves regardless of diagnosis.  A healthcare system that is still broken; that puts profits before people and doctors are unable to spend quality time with patients, often missing critical details that could mean life or death.  A pervading racism that is rarely acknowledged or often vehemently denied.  Rape culture persists; making the victims 'suspect' while perpetrators are given standing ovations. And these are just a few things that make my blood boil, that make me want to scream, hide or run away.  They are things that seem so large that it is easy to throw in the towel and just say it is all too much to even think about.

Personally, I re-cycle through my anger at myself for things I have done that hurt people.  I continually spiral through my anger at others who have hurt me.  Sometimes I think I have found something like 'forgiveness', only to have that old anger hit me again with surprising force.  The events in my life that caused the most trauma stick with me; the feelings don't just go away. Not surprisingly, one of the feelings that comes with all of these traumas is anger. It is a part of my being that I can't seem to erase by either 'healthy' or 'unhealthy' means.  The dream of lasting forgiveness, towards myself, towards others, seems out of reach much of the time.

Our culture has a strange relationship with anger.  Much of our self-help psychology professes avoiding and getting rid of anger.  In the Big Book of Alcoholic's Anonymous, Bill W. says 'If we were to live. We had to be free of anger'.  This is just one example of many similar sentiments that have popped up in the past century as 'pop psychology' has gained a foothold in our culture.  It is hard to escape hearing statements like 'let it go', 'it is what it is' and 'forgive and forget'.  My experience says that much of the time these statements are said when the 'listener' feels uncomfortable with a feeling being expressed to them.  It seems we have a deep and abiding discomfort with the sharing of almost any emotion; especially anger.

I wonder at the root of all this avoidance of feeling.  Could it be that we are taught to deny our feelings so that we can be more subservient in a culture that is far from just?  Could it be that the teachings on suppression of anger have taken away our revolutionary thought and instead, promoted endless navel gazing?  Could the diagnosis of almost any extreme emotion as an 'illness' cause suppression and despair?  Could this avoidance of feeling actually create violence and hopelessness by making us so terrified of our emotions that we don't know how to cope except to turn it against ourselves or others? 

Our rapid media cycle gives us a plethora of issues to be angry about for brief time periods until the next issue.  Sometimes, this anger comes out in comments on social media and even attacks against other people.  It's easy to hide behind a computer and spout out hurtful anger when you don't have to face any consequence of it.  What if we could learn to transform our anger into real social change instead of easy reactionary anger that does not help anyone?

In order to do this we need to be willing to be uncomfortable and open our hearts to other views, even when they make us angry.  Anger seems like a healthy response to an often unjust world.  If we can learn to speak out, utilizing our feelings as fuel, we can open people's hearts, helping them see things in ways that they hadn't before.  Beyond speaking out about the things that make us angry, we also need to act to change this world that sometimes hurts our hearts so very much.

I am a strong believer in the quote 'if you aren't angry, you aren't paying attention'.  I am often guilty of seething in my anger, letting it take up my time and energy towards no useful end.   As I grow older, I learn that I want to use my anger as fuel; fuel to write about the things that anger me and educate people to facilitate real change.  I want to use my anger to soften my heart. Sometimes all I can do is feel without judging or trying to extinguish it.  When, I have the courage to feel, I can turn my anger into something productive.  We all need to have that courage, to open our hearts, feel, and most importantly, move to change the many things that are unacceptable in this world. 

From Despair, Into Action

I enter the end of the Christmas season with the usual lack of Christmas cheer.  The kids will probably be critical of the gifts.  The world is filled with tragedy.  My baking and wrapping skills aren't up to par. A few situations in my life are not getting any better. I feel like I have little power to change one of them, and plenty of power to change the other, but lack motivation.

One of my biggest lurking feelings is a feeling of despair.  Reading the comment threads on subjects related to racism, rape, and homelessness has caused me to reflect on the lack of kindness and compassion that seem to be pervasive in our society right now.  Another things that troubles me is a lack of attention to huge horrible things that happen, like our countries drone program and the fact that the Taliban recently slaughtered 145 people, mostly children.  It seems, we either want to hide our heads in the sand or lash out in 'black and white', us vs. them ways that don't serve any of us.

This feeling of despair is not new to me.  I have felt this 'weight of the world' feeling since I was a small child.  It has not served me well in many ways.  But, it did make me an excellent case worker, someone who had big compassion for my clients and an ability look at solutions.  Being a case worker broke my heart, over and over again.  Seeing a system that was so broken, that did not serve my people in the ways they needed to be served killed me a bit inside.  It left me feeling powerless and burned out.  So, I have taken a break and started writing again, an old love rekindled.

Somehow, I need to learn to turn that despair into action.  Blogging has helped ease my powerless feelings.  It has given voice to my personal experiences while hopefully helping others learn from my past and my insights into my experiences.  In ways, it has helped me combat the powerless feelings that I have when I read hateful comments on Internet threads.  My hope is that maybe in my little way, I am doing my part to combat the hatred, to educate people about things like rape, racism, mental health stigma, domestic violence, and more.  I can only hope that it is better than staying silent about these things and wanting to hide in a cave. (although writing does not always take away that 'hide in a cave' feeling)

This Christmas, I also try to have gratitude to turn around that despair.  Sometimes, this works and sometimes it fails miserably.  Many times, I throw up my hands in hopelessness, feeling like I don't know how to parent or even be much of an adult.  So  many things happened this year in the world 'triggered' me and filled me a sense of powerlessness.   There are days that everything seems freaking crazy and that there is nothing to do but despair.  It's my fall back, I am far from an optimist.

I do see that change happens sometimes.  In my home state of Wyoming, gay marriage is now legal. This is something I would never imagine happening in my lifetime.  We have a religious leader, the Pope, who is talking about deep and important issues regarding class and poverty.  Personally, I see the inherent goodness in people; from rallying around people who have loved ones with cancer to people in recovery helping each other in concrete and helpful ways that change lives. The Black Lives Matter protest movement is working to address systemic issues that pervade our culture regarding race.  We cannot afford to be disheartened because all around us, we see that change can happen, sometimes very slowly, but we cannot give up.

Perhaps my despair is actually a gift that pushes me to speak my truth.  It has inspired me to move, to speak about the issues important to me in my personal and professional life.  My despair has almost killed me, but it has also given me a strength and insight that I would not have without it.

This Christmas, I can look back at all the horrible things that have happened in the world and get completely bogged down, or I can choose to re-commit myself to making change in the ways that I can.  I will choose to re-commit myself to being a better parent, to teaching my kids that the latest, greatest gifts and purchases are much less important than the connections we make with people; that through their gifts of writing, dance and art, they can make changes in the world in their own small ways. I will choose to continue following my passion to speak out through writing about issues that are important to me, particularly about our mental health system and changes that must be made.  I will choose to continue learning to connect with new friends and expand my circle of people to make my world a little more 'large'.  Finally, my hope is that we can all learn to speak out a little more when we see injustice, that we can choose to help, instead of harm, that we can make space in our hearts for the suffering of the world and use our own unique gifts to keep pushing forward and change this crazy world.

My Daily Nightmare

I live in a nightmare of daily worry and torment.  Someone I love deeply, who shall remain anonymous, struggles with daily physical and mental torment that daily makes this person want to die.  I struggle with my own demons, my own issues.  But, always, alongside this is a daily shadow of  my loved ones' struggle.  This darkness is deep as often it seems there is no hope.  The drugs that are out there don't help and life for this person becomes a monthly stream of trying new ones and then going through awful withdrawals to get off of them when they do not work.  I get angry when I see articles about people with mental illness that say that 'there is treatment out there'.  Is there?  For some, it doesn't seem that there is.  I know that my loved one's struggle is the struggle of millions and my struggle is the struggle of millions of loved ones.  Knowing we are not alone doesn't make it any easier.

Our system is woefully broken for these people.  All of us should have the chance to live and thrive. But, for some of us, that dream seems impossible.  Seeing dreams of the future slowly fade away is heartbreaking for our loved ones and those around them.  We see little options that haven't been tried. Seeing someone's main aspiration in life become living without unrelenting chronic pain, sleeping through the night and just being able to have a day of feeling at least somewhat o.k  seems so minimal, so sad for someone who has so much to offer this world.  But, everywhere we turn there are dead ends.  People tell us to act on behalf of our loved one, but they do not know how few the options are, how many have been tried and how many have failed.  They do not understand why the person cannot just get a job or go to school or live independently.  Our loved ones do not have the external image of someone with a severe developmental disability, but their disability is just as profound.  And for them, the options are fewer.

Other countries have more expanded options for people with mental health issues.  The Open Dialogue model in Finland is one that has proven success with less pharmaceutical intervention.  Our pharmaceutical lobby is so powerful that we often destroy the lives of people with mental health issues, treating them like guinea pigs when there are other interventions available that are never tried. Some medications are literally disabling, especially with long term use.  Community supports are often few.  People are often isolated in a peer group where they see the same issues all around them and learn helplessness. Programs are punitive to ensure 'medication compliance.  Mental health 'professionals' and doctors minimize the effect of withdrawal from psychiatric medications in spite of evidence to the contrary.  It is no surprise that in our country, there is a suicide every 13 minutes.  

My loved one and I live this daily nightmare with no hope in sight. There are thousands out there experiencing the same nightmare. I wish I had a magic wand to take away my loved ones' pain.  To fix everything so that she could blossom and grow and give to this world.  But, I don't.  And the extreme helplessness I feel follows me around like a demon. There has to be hope out there somewhere and we all must struggle on to find a better way.