No Safety Net

I live with several chronic conditions that make it hard and perhaps impossible to work.  Since February, I have been out of work due to these conditions.  With all of the other scary things going on in the country, it has been surreal to go through this personal struggle while so many other lives are also falling apart. I write this to shine a light on a system that has been harmful for people for a very long time, a system that causes death, homelessness, and suicides.  I write this to show that there is no 'charity' or government safety net to rely on while you wait on this horrible system.  

I have worked with people with disabilities for almost 2 decades so I know how difficult the whole system is to work with.  Even though I have had chronic conditions since childhood, I have been blessed to be able to work up until now for long stretches of time, but never full time. What I learned from my work with low income people with disabilities is that VERY few people do not want to work and contribute in some way.  For me, not being able to work is a devastating blow to my self esteem and sense or worth.  But, more than that, it means financial ruin and potential bankruptcy for myself and most people stuck navigating our archaic and torturous disability process.  

The Social Security disability process usually takes years to get an approval.  At the end of that process, some are left with under $800/month SSI or if you have worked enough quarters, a small amount based on what you have paid into the system.  For people like me who have disabilities that have affected them all their lives, their monthly SSDI checks are usually pretty small.  When I tell people this, they often bring up 'charity' as a way to help people during and after this process.  Nope.  There is no charity or government aid out there that acts as a true safety net.  For many this process causes homelessness due to the fact that one can't survive on NO money a month.  And most states have years long waits for subsidized housing for people with disabilities.  There are food stamps, but food stamps often don't pay for the whole of your food bill nor do many folks qualify who are in the 'gap' of making too much to get them, but too little to pay for food.  

When I applied for disability in March, I knew full well how difficult it is was.  However, with multiple conditions and a lot of medical evidence, I held out hope that I would be approved.  When I was notified in July that there was not enough medical evidence and I would have to go to their examiners so they could get more evidence, my heart sunk.  I knew that this was a VERY bad sign because Social Security's own medical examiners are often cursory and not accurate.  The first exam was with a male psychiatrist in an empty office in an empty building.  I mention this because I have PTSD and that alone gave me a panic attack the instant I got to the office.  He was extremely abrupt.  When I asked him to speak up due to  my hearing loss, he refused.  He spent the entire exam turned away from me staring at his computer with a mask on firing off personal questions.  I could barely hear him and was having a panic attack, but did the best I could.  I left feeling invaded and dirty; like I had just been violated by someone with no warmth asking me the most personal questions about my life one can imagine.  

The next month, I went to the physical exam.  I knew that these were notoriously worse than the psychiatric exams, but little did I know how bad it would be.  I went in and felt very sick and anxious.  My pulse was taken and it was at 150 which the nurse seemed to find alarming.  I then sat on a massage table for 30 minutes in excruciating pain.(due to my spinal conditions sitting in bad seating for longer than 5 minutes is horrific) The doctor came in and he also had a quiet voice.  I asked him to speak up and he also refused.  I tried to tell him about some of my limitations and every time I spoke, he cut me off after a few seconds.  He did a few balance tests and some cursory tests with my hands and arms.  I asked him about my pulse rate and he said it was nothing to worry about and slammed out of the room. In total, the appointment was 15 minutes.(at least the psychiatrist took an hour) After this appointment, I was even more upset and drove home feeling extremely despondent.  

A week later, I received a denial letter that was clearly based on the last exam rather than 100's of pages of medical evidence Social Security received from my many long term providers.  My primary doctor was completely appalled and told me the physical examiner said I had absolutely NO work limitations whatsoever and could even do physical labor.  I looked up the doctor's reviews and saw that many other people had the same experience.  I tried to complain to several sources and was either completely blown off or told there was nothing to be done.  It is completely wrong that this doctor, who is being paid by our taxpayer dollars, can ruin people's lives this way.  He is clearly not doing his job at all and getting paid to deny people.  Additionally, it is wrong that they can base someone's ability to perform a full days work seated or standing based on a few simple tests in 5 minutes in a doctor's exam.  I am appalled that this man will continue to do this to people and there is absolutely no recourse to change that. People with disabilities are often left with no recourse in systems in which there are serious and valid concerns.  Furthermore, it is terrifying to complain for fear of losing future benefits and services.  

When one gets a denial letter, one can either appeal the decision(which takes more than 1 year to wait for an appeal hearing before a judge), or one can re-apply and risk having the exact same thing happen at the initial level.  Either way, the process can take years while one lives with no money whatsoever.  Many people are currently un-housed as a result of this very inhumane system.  

This denial letter and the subsequent lack of recourse(and length of time to get a positive decision) has increased my already severe anxiety and depression.  I do not know how to survive or contribute to our household and we cannot live on one income.  My credit card debt is growing.  Mine is not a unique story.  There are thousands like me out  there, some on the verge of homelessness.  

Right now, there is so much financial ruin that it is hard to comprehend, but for many of us, it is not a new story.  Our societies' 'independent' pull yourself up by  your bootstraps' mentality makes it horrible for people in with new disabilities in this situation to reach out to anyone for help.  The judgment against us is strong and many question the validity of our lack of ability to work, particularly if we have invisible disabilities.  There is also an unspoken taboo in 'polite' society about discussing money woes.  All of this leaves us feeling extremely alone, hopeless and trapped with nowhere to turn for help.   More and more people like us are thrown away and forgotten with stories unacknowledged and hidden.  We are human beings who deserve to survive in a country that doesn't seem to care much whether we live or die.  

Trauma's Long Term Wounding

Several months ago, I was embroiled in a bit of a family drama. I received a vicious e-mail from a cousin, who I do not know, about one of my blog posts.  This blog post expressed my love for experiences we had at our beloved family cabin, but also expressed hurt that the cabin was gone.  Having someone completely belittle my experience and viciously attack me about a heartfelt blog post, made me sick and sad. Knowing that 'family' could be this heartless and unkind made me sick to my stomach.  It also triggered old traumas, old hurts.

Since rape and domestic violence in my late teens and early 20's, I have suffered from PTSD.  More than 20 years later, at times, I expect this hurt, this pain, that I carry deep within my body, to be gone.  I often don't realize how easily triggered I am, nor recognize when I begin to shut down.  The e-mail that I received and the actions of other family members in this same clan made me question myself, made me shut down and hide.  I felt overwhelmed and felt that I had  no worth.  The same feelings and insidious messages my abuser had instilled in me.  I recently read that one symptom of PTSD is the feeling that your world is about to fall down around you at any moment.  One trigger can set me into this feeling and throw me into complete panic. With the events that happened back in February, I have slowly begun to realize how easily I am still triggered.  Abuse and trauma never completely go away. 

Many traditions and philosophies have a message of 'acceptance', of learning to accept those things we cannot change. This philosophy, while helpful for some, can be harmful at times for those of us who have suffered from abuse.  When we have the type of body trauma and anxiety that comes from deeply abusive and invasive experiences, it is really hard to accept those things we cannot change.  It can take years to heal from traumatic experiences and jumping to 'acceptance' or 'forgiveness' can, at times, suppress the real healing that comes from feeling the rage, the sadness, and  the loss of innocence and trust.

With each trigger, I learn that my trauma lies deep within my body, mind and spirit. I wonder about the very public victims we have heard about the past year: the women who were raped by Cosby, the young victims of Josh Duggar, the many victims of campus rape, the ex-wife of Bill O'Reilly, and more.  How are they faring? Are they easily triggered?   Do they shy away from intimacy and struggle with this many years later? Do they have a hard time trusting anyone? Do they carry their trauma as wounds to their souls and have they been given a chance to heal?  My heart hurts for them. This long term hurting and healing is often forgotten in discussions about sexual and domestic violence.  Media doesn't focus on the fact that abuse is a wound on the victims' soul, a wound that can be re-opened, that can refuse to heal.  Sometimes, they talk about the hypocrisy of the perpetrator, but we forget that years later, there are still victims of these crimes that are facing ongoing life-changing hurt.

I also feel deep sympathy for 'public' victims as they not only have their own trauma from the abuse, they are also re-traumatized by people in the media who minimize their pain.  The media has been rife with examples of this cultural need to require victims to shut up, accept, forgive and move on. We hear public figures call abuse ' a mistake' while trying to minimize the impact, the deep hurt that the victims are subject to for the rest of their lives. My call to the media, to public figures who speak out, is to think before you speak, think of the victim and the trauma they endure and then re-endure when their abuse is made public by choice or by chance.  My call to all of us is to be kind, to think about the impact that your mere words can have on someones life, be it a nasty e-mail or a hateful comment on social media.  There are so many of us out here, wounded and trying to heal.  We could do with more compassion and a little less judgment and denial.

I feel my trauma deep in my mind, my body and soul.  I have worked hard to heal.  But, that trauma is still there, at times, lurking beneath the surface. Sometimes I don't even recognize it when my wound is re-opened and raw. This wound is not visible to the outside, but it is there nonetheless. There are millions of us walking around with similar wounds that at times become infected and life threatening be it through suppression and minimization of pain or through new abusive and hurtful experiences.  All of us need to do more to prevent our lives and our children's lives from being shattered by abuse.  We need to stand up to those who want to shut us up, who want to deny our experience.  As we all work to prevent and heal from abuse, we need to hold our hearts open for others who are hurt and wounded.  Remember that our trauma is a long term wound and that we must be gentle with ourselves to move forward.  Together, we can heal, grow, and work towards a world where abuse is rare, not common, and those traumatized are supported, not suppressed and re-traumatized. 

Our Tragic Legacy of Hiding

Since last week, I have been in heavy 'musing' mode, struggling to find the words to thoughts that overwhelm and disturb me.  So many times I come face to face with the issue of secrecy, hiding and shame and it seems like it is beyond my abilities to address it.  It is so deeply embedded in our society and our families.  Our ability to communicate and listen, to confront, and to soothe is so badly damaged that people are literally dying both quick and long deaths because of it.

This post is for the woman living in fear of a husband who abuses her, who hides this from everyone because he is a 'well respected' member of his community and no-one would believe her; a woman who suffers more than anyone should ever suffer without community to support her.

This post is for a man with mental health issues who lives in perpetual suffering in his head; who fears reaching out because 'men just don't do that'.  Even if he did reach out, the methods of 'care' are sadly lacking because of our deep ties to the pharmaceutical industry and our inability to find better options.  Options that may be more available if we, as a society, had just learned how to question, how to look deeply and confront wrongs and find better answers.

This post is for the sexual abuse survivor who tells small parts of her community her story, only to be shunned, ignored and sometimes even ostracized; a survivor who learns that hiding is better because that's the message society gives her.  This survivor loses key supports by isolating and those who 'know' are often left to carry a heavy burden themselves, without community, without communication; sickening whole communities of people.

This post of for the gay teenager living in a small religious community, who hides a major part of who he is for fear of ostracism and sometimes worse; a teenager who may become addicted to alcohol or drugs or even kill himself because the price of hiding is just too great.

This post is for the person who grieves the loss of a close loved on in secret because our culture puts a 'timeline' on grief and looks down on long term expressions of grief ; a person suffering in silence instead of sharing a load that may be made lighter just by the sharing of it. 

This post is for countless others who hide parts of themselves, who hide parts of their stories, because there is no support out there for them; who, when they do share their stories, are often ignored or diminished in sometimes deeply wounding ways.

We are as sick as the secrets we keep, the shame that we hold on to and are terrified to share and release.  This shame isolates all of us and teaches us to shut our hearts down in the face of pain.  It separates us from other people; diminishing our sense of community by closing all of us down to the pain and trauma that is merely a part of human experience. 

We learn from this culture that some things must be hidden.  Our deep hurts, our grief, our traumas, our addictions, our illnesses all must be hidden away.  We are taught to 'hide' and  'move on'.  Our children are taught that tough situations must be hidden, that its better not to talk about major trauma.  This hiding and suppression is deadly to both children and adults alike.  Those of us that refuse to hide are often ostracized.  Hiding our trauma often leads to addiction, physical and mental health issues. The traumas that happen to one person often affect entire communities with a dark and dysfunctional weight, a legacy of shame and pain. 

We cannot afford to keep hiding.  Our children deserve so much more than the society that they are born into.  They deserve communities of support where they can express things that torment them without fear and surrounded by love. Without expression of our deep sadness and trauma, we can never experience real joy.  All of us deserve a place where we can be open about trauma, where it is not a 'dirty little secret' that we carry around while it silently kills us.  We can no longer run from those things that make us uncomfortable. Those who are suffering deserve so much more than silence and avoidance. We all deserve so much more.

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.

The Crazy One

In the past few weeks, I have felt myself reverting back to that uneasy label that lurks in the back of my mind, waiting to come out when I am not feeling strong or when I am feeling so completely and utterly different from the rest of the world.  The label 'the crazy one' is probably one that I gave myself in my teens when my emotions and despair were so extreme that I almost died.  Perhaps it was a label that came from being hospitalized at 16. There is nothing like the diagnostic and somewhat paternalistic environment of a mental hospital to reinforce that 'crazy' label.  I remember coming back to school after that hospitalization feeling like I carried a scarlet "C" for crazy.  For years after, I felt like family members tiptoed around me, that I was someone to be watched and shielded from the world. Internally, this label kept me from reaching out for help, from expressing who I was and sometimes left me walking around feeling like I had something to 'prove' in this world; to prove that I was strong and not 'crazy'.

Somehow in my late teens and 20's, I found myself  in a relationship with someone who deeply reinforced my feeling of difference, who made me feel like I was 'nothing', who made me question my own reality and everything around me. As most good abusers do, this person was skilled at making me feel like no-one else would love me, that I was internally flawed.  No matter what he did to hurt me, he could always it turn around and make it my 'fault'.  This person knew how to keep the focus on himself while at the same time making me feel like nothing, like my world was only him.  I remember the only times of 'joy' I had in those years in my 20's were when I could get away from him. When he was not around, my young daughter and I could be free for a bit and I actually could feel connected to her and to myself away from him.  My relationships with others, who helped me reflect my beauty back to me probably saved my life.  Without them, holding me up and pushing me forward, I may not have made it through this crazy time when my world was 'him' and 'I' was often completely lost. 

Recently, I was embroiled in some drama that involved close family members and extended family members who do not know me at all.  This drama involved my close family members defending each other against attacks by some 'not so nice' extended family members.  The interesting part of this 'drama' was that, in spite of the fact that I was just expressing my feelings, an extended family member wrote one of my close family members expressing concern about my emotional state!! Additionally, I was attacked by another extended family member(same family) for one of my blog posts that basically just expressed the facts of the situation while expressing how I felt about that same situation.  Somehow all of this gave me that 'uneasy' crazy feeling.  In the instance of the blog post, I felt that someone was completely shredding 'my character' and I questioned and re-read all of  my communications with this person, trying to find my 'craziness' to see if he was right.  In the case of the other family member who sent the 'concerned' e-mail, I reverted back to questioning my own sanity and wondering if I was indeed, 'just too sensitive'. 

I realized that that family drama triggered those old feelings in me; feelings that were prevalent throughout my teens and 20's.  Somehow when dealing with extended family members that had no empathy for my feelings and made me feel like nothing, I found myself 'back' in that relationship where I learned to feel like I was 'nothing'. Expressing my 'truth' and my 'anger' had once again turned me into the 'crazy one'; the one who was just too emotional.  Luckily, now I have enough awareness and self esteem that I know not to buy into another person's ideas of who I am.  However, it is sometimes difficult to escape from those body memories that come up unbidden when triggered by narcissistic people.  There is just something so mind-blowing and utterly confusing about people who have no empathy, never take responsibility for their actions, and always make the other person 'the bad guy' or the 'crazy one' when they are backed into a corner. 

It took me a long time after that long abusive relationship in my 20's to regain, or even find a self beyond him.  It also took me many years to recover from a hospitalization in my teens that made me feel like the 'crazy' one, that instead of giving me skills and self esteem, gave me shame. As I learn to speak out from my heart and be more of who I am, I realize that some of who I am may make some people uncomfortable.  But, for those who choose to attack me for those feelings or express faux concern about my 'mental state', there is absolutely nothing I can do but ignore them.  Some people are just not worth interacting with.  No matter how hard I try to wrap my head around a person's behavior(particularly a narcissist), it will always be impossible to understand.

It is somewhat easy to distance oneself from toxic people, but it is not nearly as easy to distance oneself from a society that is full of 'expectations' of 'normalcy'.  These expectations shame and exile those of us who may seem 'out of the norm', sometimes driving us underground to isolation and even death.  If we are lucky, we find others like us and realize that we are beautiful in all our craziness.  We are able to share and give back to the world.  If we are not lucky, we are often exiled(with varying diagnoses) into groups of others who are dysfunctional and lost, only to struggle through life unfulfilled and sad.  In order to change all this we need to learn to embrace our 'crazy' selves and be exceedingly gentle with them.  When we meet someone who may seem 'different' or maybe even a little bit 'crazy', we need to open our hearts and minds and listen.  For me, strength comes in finding others walking this path of growth and authenticity.  If we can learn to embrace our differences, band together and reach out, perhaps us 'crazy ones' will begin to change this sometimes baffling and cold world.  We can harness that we which sets us 'apart' and pierce through the crazy making world of  'normalcy' and create a better world.