End of Year Letter with Just A Slight Edge of Gloom

The end of the year is a time for reflection.  I can look back at 2014 and see a lot of positives and a lot of negatives.  Right now, I am in a state of sadness about an ongoing situation in my life that seems to have no end and no resolution.  It is hard to muster up the New Year's cheer today.  For those that have followed my blog, it is related to My Daily Nightmare blog post and the sadness around all this feels like it is going to suck me under.  But, I will push forward and attempt to write and maybe find something in this year, in this day that is worth writing about.

This year was a year of firsts for my youngest, who continues to push forward in life with passion and determination.  First solo, first car and driver's license, first job, and first surgery.  Driving took her further away from us and closer to adulthood; it broke my heart a little, although I tried let go. Her incredible solo punctuated her love for dance and showed others how talented she really is(although I had known it all along, of course).  Tonsil surgery was brutal, but she made it through with a little help from many friends who helped her keep her mind off the pain.   She continues to push forward, much too fast, with much enthusiasm and energy. Her ability to see and create magic and beauty in the world inspires me every day.

Last year, about this time, I was getting ready for big toe joint fusion surgery.  This terrified me as 2 previous foot surgeries had been failures.  Although recovery wasn't easy, this surgery has actually been a success.  I no longer walk around with my big toe in constant and chronic pain.  With effort and a little pain, I was able to hike 3 miles last summer with my sister, niece and my youngest.  This would have been impossible before the surgery.  It's incredible how freeing and amazing it felt to have health insurance, get something taken care of and be able to do things, like yard work, that I had not been able to do for years.  I still deal with chronic foot and back pain, but at least that foot is somewhat better.

One of the most pivotal parts of the year for me was quitting a job which I hated with no 'safety' plan or back up in place.  This decision was one of the wisest decisions I have made although it continues to be terrifying.  I took the time to figure out what I wanted to do and learned how incredibly burned out I was by day to day client work and fighting with systems.  It is yet to be known whether it is a line of work that I will return to, but the break has been extremely helpful.  The break led me to writing again.  I started blogging and have absolutely loved it.  No matter what happens, I know that I did the right thing because the decision led me back to doing something I love, no matter where it leads(and a lot of bonding with  my little pack of dogs!!).

Most importantly, this year has been a year of helping people.  From helping my mom with recovery from knee surgery to helping my youngest recover from tonsil surgery, I was able to be there for my family. In March, we were blessed with a strange and unforeseen(long story) visit by a young man with mental health issues we had never met who had nowhere to go and did not know what to do. This young man was one of the most forgiving young people I ever met and he touched my heart. My partner, my youngest and I were able to be there for him in concrete ways that helped him get to the next place he needed to go.  I am always grateful for the opportunity to help my closed loved ones, but in this case, I was very touched by the three of us and our ability to come through for this young person we had never met.

Writing this blog post has shown me that sometimes, in writing, I realize the good things and can open up my own heart even in the midst of extremely trying circumstances.  There was more to this year: there was theft, filing a restraining order, a great road trip with my partner, a crazy bad camping trip, the loss of our family cabin and some of the upheaval that has plagued us for quite some time. But, the good still shines through: my partner finding a new hobby she was passionate about(fishing), me rekindling my love of writing, and my youngest continuing her amazing life journey and dedication to her passions.

As the Grateful Dead would say, it's been another long strange trip.  Most of my years are.  I am grateful that I found new friends this year to share my journey.  I am grateful for my family and my old friends who love me.  2015 will bring new journeys, heartaches and joys. All I can wish for is to continue growing as a parent and a person and continuing to help people through my writing and more.  Sometimes my heart feels too open, too broken down, and too much for this world, but somehow those little pieces of hope just help keep me pushing through.  Thanks to everyone who helps keep the pieces of my heart from flying apart. With all my love.

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.

Who Is The Victim?

My consciousness is not ready to let this topic go.  Camille Cosby's statement on her husband's rape filled me with anger and helped me realize that I still need to speak about this issue.  One blog post was not enough.

When I was 14 years old my world changed.  My coach was arrested for statutory rape.  My world shattered.  He was a man who I spent hours of my life with, who I looked up to, loved and respected. Innocence was lost.  No longer could I trust my instincts.  It did not help that I soon found out that many knew, but, I was one of those who didn't, who was completely blindsided.  I was sickened and sad and had nowhere to turn.  The next year I almost starved to death.  My psychiatrist in the mental hospital I was in at 16 assumed that my trauma was somehow linked to my coach and would try to get me to admit abuse.  The problem was I was never abused by my coach, but the trauma of losing my innocence, of losing someone I looked up to had wounded me deeply.  The clueless psychiatrist refused to see that sexual violence has vicarious victims. Writing about it now, almost thirty years later makes my palms sweat and fills me with anxiety.  These traumas hold on to us.  

As vicarious victims of this crime, we spent hours of our lives year round with this coach. From him, we learned a lifelong passion and life lessons.  It was hard to grasp that he had done something wrong.  It was stunning and sad.  For some, these feelings made them lash out at the victim with great vigor.  I remember being baffled by this also.  They could not grasp that this figure that they loved could do something wrong, or that it was wrong to have sex with a minor, and even more so when you are in a position of power.  Many made the victim the 'wrong' one in this case.  It was a case of extreme bullying which I am sad to say I did not speak out against, but only watched in silence.

Watching this ostracism and bullying taught me that it was extremely frightening and isolating to report a rape.  It kept me from reporting my rape my first year in college. Perhaps if the adults in our lives would have been more open, would have come out and talked to us about how wrong it was,  maybe things would have been different. The victim left our school and life went on.  All of us shell shocked and unsure how to process what we had been through, we just pushed forward.  I don't know if anyone realized how traumatized we were, how much losing our sense of safety and trust affected us. We learned to vilify the victim of this crime and to silently cope with our conflicting emotions in sometimes destructive ways.  

Unfortunately, I have seen this same type of victim bullying in the  Cosby case. For me, these very public rape cases have triggered me and filled me with anger when I see victims blamed yet again. When Camille Cosby compared her husband's rapes to the UVA rape case and said that the UVA rape case 'proved untrue', she was bullying that victim.  I felt sick for the victim in that case as Rolling Stone's poor journalism has thrown her story into question and people are now throwing it out there as an example of false rape reporting. Camille Cosby is using it as an example of why we should think her husband is innocent.   I hear Camille Cosby asking 'who is the victim?' and I cringe inwardly.  In this case, I do not understand how her denial can run so deep as to claim that over 20 women are making up the same story.(a story that isn't new to her since a case was settled in 2006 with Cosby which had 13 witnesses with similar stories, many of whom are coming forward now) Why say anything in this case? Why bully the victims of her husband and the victim in the UVA case?  To many, it is very clear who the victim is, Camille Cosby and it is not your husband.  

We want to believe that sexual predators look a certain way.  It's hard to believe that they are often perfectly nice people in many areas of their lives.  But, the reality is that many sexual predators are like Bill Cosby and like my coach.  They are sometimes good parents, good friends and even 'role models'.  They don't 'look' or 'act' scary and this makes it harder for us to believe and support victims.  We do not want to believe people like our good 'father' figure, Bill Cosby or my 'fun' father figure, my coach are criminals in spite of overwhelming evidence to the contrary. This mantle of respectability and kindness give predators a great deal of power with victims and with the people around them.  It contributes to burying allegations of sexual crimes and blaming the victim.

I think of the men and women who I know who have been sexually abused as I read this latest round of victim blaming.  I think of people who have been abused by siblings, by acquaintances, by fathers, by strangers, by teachers and by coaches.  I knew what it was like to love and respect a sexual predator. When, I found out he was a predator, my heart was broken.  My feelings were so mixed up because I could not accept reality.  Our culture refuses to accept the reality that men and women who are 'respectable' can be predators.  We  need to wake up.

When men and women come forward with sexual harassment or rape allegations, we need to confront those who immediately question and shame victims.  We need to know that in spite of how someone may seem to us, they indeed may be sexual predators. Our culture is rife with examples of victim blaming that starts sometimes as simple as a 'boys with be boys' attitudes when girls are harassed in schools.  It starts with something as simple as abuse of boys by women being laughed off and ignored.  As victims, we need no longer remain silent.  We need to fight back in ways that make things different for our children.  All of us can no longer sit silently by and tolerate victim blaming or sexual abuse on any level.

Together, We Are Not Broken

Since I started this blog a few months ago, I often have inspirations; a small voice that tells me what I need to write about next.  Sometimes these hunches are inspired by current issues in the media and other times they are inspired by personal experiences that are making their way to the surface of my consciousness, urging me to write about them.  This topic has been a nagging small voice for at least a month now.  The media has definitely pushed this nagging voice, with Cosby, with the Rolling Stone debacle and the discussion of campus rape.  But, I had a great deal of fear about writing about my experiences.  I realized that my fear is not all that different from what I felt 25 years ago when this experience happened.  The fear is rooted in the shame of what I experienced and that blame that I still put on myself 25 years later. This collective, misplaced blame that our culture inflicts on survivors of sexual violence is something that is hard to escape.

25 years ago, October, 1989, in my first month of college, I was raped.  As a teenager, I never had a relationship and had never even kissed anyone.  My experience with drugs and alcohol was extremely limited.  On this night that is etched in my consciousness, I hung out with my roommate and her boyfriend and was under the influence of a drug that rendered me somewhat frozen.  My roommate and her boyfriend left me at an apartment with someone I did not know.  This person was drunk, took advantage of the situation and raped me.  

I remember making my way back to my apartment, broken.  I remember the long shower and the feelings that could not be washed away.  I walked around campus that day in a fog of sadness and pain; heartwrenching physical and emotional pain.  Back in my apartment, my new friend, Heidi looked at me and knew something was wrong.  She pulled me back into her room and asked me what was wrong.  I told her.  She was loving and kind and most importantly, believed me.  Somehow the story got out to my 4 other roommates. One was extremely angry and wanted me to press charges.  Two of them did not believe me and openly said that I was responsible for this experience as I was there alone and it must not have been rape.  The one who left me there never did say much except to tell me later that her 'real' boyfriend(not the one she had been with that night) was very angry at her for leaving me there, unprotected and vulnerable.  

Reporting this rape was not an option in my mind.  My mom was a director of a family violence/sexual assault agency and I heard all the stories of women who were raped and their rapists were never convicted.  Most importantly, in high school, I witnessed extreme victim blaming when a victim of statutory rape was ostracized for reporting the rape.  These fears, the reactions of my two roommates, and the fact that it was an acquaintance rape where I was under the influence of drugs kept me silent. I did what was expected of me, kept quiet and let this trauma eat me up inside.  

This experience colored my life in ways that I was not aware of until much later.  It made an already difficult relationship with my body, even more difficult.  I learned to disconnect from my feelings even more and to detach from my body.  The only thing good that came of it was that it solidified my friendship with my lifelong friend, Heidi.  My relationship with men became fraught with mistrust and fear for many many years.  It took away my intuitive sense of what was healthy and what was not, and it was hard for me to discern who the 'good' men were and instead, I could only love men who were broken, even if they were violent.  The disbelief of my roommates and the dismissal by others taught me to question my own reality  My intimate relationships were effected in ways that are difficult to define. I never went to therapy for it because I didn't know if it was real.  Was it a real 'rape' or were my roommates correct in thinking it was my fault for being in that situation?  Were the feelings of violation and deep despair a mere figment of my imagination?  

Since this experience, I met many women and men who experienced similar traumas; women and men who never reported sexual violence, who questioned their reality even when they knew deep down they had been violated.  These shared experiences have helped me validate my own reality, to know that what I experienced was real and to see how it effected me.  I am filled with despair and guilt when I hear the statistics about the percentage of rapists who rape again.  Could I have stopped this rapist? I can only hope it was a one time thing for him, but I will never know.  

Why do I share this  now? Some of the reactions I have seen to the Cosby rapes and to the Rolling Stone rape story, have made me deeply uncomfortable.  Again, 25 years later, I see victim blaming and questioning of victims stories.  It is not a walk in the park to come forward with a story of deep sexual violation.  The percentage of 'false' reporting of rapes is very small.  It makes me physically ill when I see women and men accusing victims of lying or somehow profiting from reporting of these horrible violations.  The Rolling Stone story made me even more uncomfortable as I heard that 'friends' were sharing that there were discrepancies in Jackie's story. This could have been me.  My roommates could have come forward with similar allegations, even though what I experienced was very real. My heart went out to 'Jackie' going through her recovery from this horrific event in the public eye.  I cannot imagine how heartwrenching and painful this must be for her.    

I share my story because I cannot be silent.  My silence makes me complicit in a culture that still blames victims for rape.  I have two daughters and I do not want them to live in a world where women are brutalized.  Unfortunately, they do. What can I do? I can teach my daughters to believe survivors of sexual violence, support them and fight for them.  I can teach them to be open about their own experiences, to seek support and fight back.  Importantly, I can teach them to never leave their friends alone in situations that could be dangerous, to listen to their guts and get themselves and/or others out of situations that just don't feel 'right'.  

Looking back on this experience, I feel tremendous sadness for the broken and alone young woman that I was.  My heart fills with gratitude that I had my friend  to support, believe, and love me even though I could not talk about it.  My heart breaks for men, women, boys and girls broken by sexual violence.  Sometimes, we learn to slowly mend our broken pieces and tragically, sometimes we don't ever mend those broken places and escape in death or addictions. The more we speak out about our experiences, the more we can fight a culture that shames us and strives to keep our experiences hidden. If we have the courage to share with others, to band together and speak out, we can become unbroken; ready to change a world that shames us and to eliminate sexual violence.  

Angry White Girl

I thought this week would pass without me doing my Sunday blog post. I felt like any of the issues I wanted to focus on were far overshadowed by the events in Ferguson.  It went beyond the events in Ferguson to racism that I saw in response to this tragedy that showed our collective racism. It just made me sad, angry and filled me with an overwhelming sense of hopelessness. I decided to go ahead and try and address it in my own very subjective way, however imperfect, because being silent is not an option.

I have seen this racism all around me, and yes, I acknowledge that I am racist.  I cannot get away from it.  I grew up in a town where the overwhelming majority of people were white.  I grew up in a family where I heard racist jokes, and knew they were wrong, but did not know how to stand up against them.  Although I went to college in a place far from my small town in Wyoming, it was still overwhelmingly white.  I ended up in a city, which was one(and may still be) of the whitest cities in America.  Then, I chose to raise my kids in another very white town, maybe not quite as white as the one I grew up in, but nonetheless very white.  I can honestly say that I have had only one black friend in my entire life.   Although, I may strive not to be racist, I know that it is nearly impossible for me to escape the insidious and subtle racism that permeates our culture.

As a young child, from the time I learned about slavery,the genocide of Native Americans, and the Holocaust,  I was ashamed that I was a white skinned girl of European ancestry.  This shame went deep and contributed to my life long depression.  I somehow could not separate myself from my ancestors.  The violence and hatred was in my bones and it filled me with an overwhelming sense of despair. Although, this may make me sound like a whiny white girl, it is the truth of my experience.

Later, I was still a whiny white girl with a big sense of sadness about being a white girl, but I learned a small bit about oppression being bisexual, a person with mental health issues and a physical disability which caused some fairly significant limitations.  This small bit of oppression is nothing though in the scheme of things.  I cannot know what it is like to send my girls out in a world where I fear for their lives if they are pulled over by police.  I cannot know what it is like to be targeted while shopping because of the color of  my skin.  I cannot know what it is like to be passed over for employment because of my name or the color of my skin.  I cannot know what it's like. I just can't.

But, what I do know is that I feel despair when I see how much deep racism still exists in our country.  I am sometimes startled by it, as if waking from a dream, or waking from a false reality only to come into the  reality of the nightmare that exists.  Anyone that denies that the lack of an indictment in the Ferguson case does not display our racism as a country is in very deep denial.  I honestly don't know how one can look at the facts of the case and not be dumbfounded at the fact that there was not an indictment. Seriously.

I  don't know what else to say except we need to wake up.  We need to have conversations and dialogue about race in this country.  We need to act to make changes together. Something is very wrong and I don't see it getting better.  We see it in our prison system, in disparities in our education system, and in black people getting murdered by police on a weekly basis.  Yes, murdered.  I am angry and as with all 'big' wrongs in our country, it fills me with a sense of hopelessness as I don't know what the answer is.  There doesn't seem to be anyway to change the deep racism; where people dig in their heels and turn a blind eye to it.  As a whiny sad white girl in my white town, what can I do to be an ally?  Arguing over social media doesn't seem to do anything to help as all I see are people stuck in their positions and not opening their minds, even a little.

I guess all I can do is try and articulate it and speak out.  I have learned from various psychological traditions that anger is something to be avoided, that it can only lead to personal destruction.  I think I need to question this because there is a lot to be angry at.  I still believe that anger can lead to change and I cannot deny I am angry.  I cannot deny that this anger can be funneled into something constructive and help facilitate change.  Maybe we all need to get a little angry and let the force of it bring us into greater understanding and dialogue. Sometimes I wonder if the mostly white forces that decry anger use it as a tool to suppress real dialogue. I feel sick that black people in urban areas and white men with mental health issues in rural areas are disproportionately murdered by police.  There is something wrong.  We need to get angry. We need to get sad.  We need to step out of our little self imposed boxes and be willing to be uncomfortable with our own racism. We need to open our minds and our hearts to listen to and learn from each other. We need to feel all that is screwed up in this world and most importantly, we need to act, to speak out and make real changes.  

Dances with the Devil

My experiences with the medical profession, while annoying, have not been deadly.  This post is dedicated to all those who have died due to inept practitioners who don't take the time to listen to the person as a whole; practitioners who may not be completely to blame in a for profit healthcare system that is failing miserably.  The title of this post may seem extreme, but I want it to be clear that the 'devil' in this case is not the doctors, but, a very broken healthcare system. 

When I was a teenager, I was hospitalized for anorexia. I remember, as if in a fog, the 6 weeks of so-called 'treatment'.  My treatment mostly consisted of a psychiatrist who could not seem to get it out of his head that I was abused by someone I wasn't abused by. Mostly, it consisted of being watched while eating and threatened if I didn't.  I remember being watched continually, strange group therapy sessions, and being moved down to 'level 1' because I would not participate in a movie discussion. When I knew my insurance was done paying, I told the nurse the night before that I would rather die than end up in another mental hospital.  She reported me as being suicidal.  I called my parents and told them what happened.  The psychiatrists could use this so-called suicidal ideation to get an extension through my parent's insurance company.  But, my parents knew this place was not helping me.  They actually listened.  After the hospital, I did not get better right away but was able to find some alternative types of therapy that actually started to help a little.  These mental hospital experiences gave me a lifetime mistrust of doctors and helping professionals in general.  At 16, I could see that the so-called treatment I was getting was really not based on who I was and offered me little in healing my underlying issues. 

When I was 19, my foot was ruined by a podiatrist who insisted I needed bunion surgery when I had little pain, just some bunion deformity.  For many years after the surgery, I struggled with pain.  I could no longer run and it was difficult to cross country ski.(2 things that I had loved for years) As the years went on, I became unable to dance, another love of mine.  Finally, I was told that the initial surgeon set the bone wrong.  20 years later, I had another bunion surgery to re-set the bone with the promise it would take away my chronic pain.  It didn't work.  I was told recently that having 2 surgeries on that joint have actually exacerbated pain in my other toe joints. When my other big toe gradually became extremely painful, I was told by a doctor to wear Birkenstocks for a year and it would cure the pain.  Two years later, I was told the joint was so deteriorated by arthritis that the only option was joint fusion.(apparently, Birkenstocks didn't work-surprise!) The interesting part about my foot story is the first doctor was most likely motivated by the money he would get for an unnecessary surgery and did not look at trying non-surgical options first; whereas, the second doctor did not listen at all to how much pain I was in but instead gave me cursory advice in his quick visit before moving on to his next patient.

Perhaps the most frustrating recent experience with doctors has been my experience with medical advocacy with a close loved one and my dad.  In my dads case, I repeatedly told his doctor that his medication was causing agitation and the doctor basically ignored my concerns. This medication was known to have this type of side effect in the elderly, but she dismissed me repeatedly.  In my loved one's case, I see doctor's leap to crazy conclusions about her condition based on tiny parts of things she says. (I won't go into detail, but I will say it is laughably ludicrous) They continue to look at symptoms instead of taking a careful and thoughtful history to determine the best course of action.  Perhaps most importantly, I see them continue to throw meds at her with often less than 15 minutes spent talking with her.  These medications have had devastating effects on her life and may have done more harm than good.  There are still no answers for this loved one and the last visit with a so-called specialist was one of the most demeaning and patronizing appointments I have ever witnessed. In both cases, I have seen doctors baffled by conditions that are not easily 'fit' in a box with no quick fix in sight.  This bafflement, I believe, creates a bit of hostility towards a patient that does not respond well to traditional interventions.  Instead of being open to non-medication interventions in both cases, doctors just throw up their hands and keep falling back on the same old prescription playbook that clearly is not working. 

And finally, my experience working with people with disabilities punctuates my experiences with the medical system with heart wrenching tragedy.  Countless clients have struggled with chronic conditions, with very little compassion and great frustration when quick fix treatments don't work. With certain insurance, like Medicaid, clients were not even able to get second opinions because of the lack of providers that take Medicaid.   I can think of at least 2 clients who are dead because the symptoms they reported to doctors were not taken seriously and they died of aggressive terminal illnesses. Clients fought for years with a healthcare system just to be heard, just to get some kind of treatment that was meaningful.  Some died, some deteriorated and some walked around with an extreme sense of grief and hopelessness feeling like there were no answers. These experiences are not unique and many with disabling conditions are left feeling powerless in a system that is supposed to be designed to help them.

Our fee for service health care system has made health care a business where doctors are paid by treatment, not outcome.  Doctors are conditioned by insurance companies to throw people into simple 'boxes' so they can be paid.  Prescription drug companies have become like car salesman, creating pretty ads, aggressively courting doctors to promote and prescribe their drugs and passing advertising costs on to the patient by increasing prices for medication.  With the costs associated with dealing with health insurance, primary doctors and specialists are often forced to book short appointments.  There is little time to look at the 'whole' picture in this system.  We fail people with chronic conditions in a world that is centered around billing, symptom treatment, and prescription drugs.  Instead of looking at a person as someone with a complex health history who needs equally complex and thoughtful treatment, doctors are forced to look at separate symptoms, throw some meds at the person, and move on to the next patient.  As referenced before, the results of all these things leave patients feeling completely powerless and often, sicker.

Incredibly, in this system there are still 'good' doctors that thoroughly examine and take careful histories of clients.  In the past year, I was blessed to have one of those doctors for my youngest daughter.  This experience surprised me, and it shouldn't have.  This type of doctor should be the 'norm' not the exception in the medical field.   In my personal experience as a care provider for loved ones and my own personal experience, I know the devastating feeling of waiting months for a doctor only to have them completely dismiss your issues.  For some, this dismissal could be deadly as some get tired of fighting and give up.  As patients and caregivers, we complain about these issues.  We complain and complain, but then we run from the idea of 'socialized' medicine as if it is a demon.  I honestly cannot a imagine a bigger devil than the fiasco that is our current healthcare model.  We need to open our minds and demand better.  

Grief Lives

There are days like this, where grief wraps around me like a blanket of deep sorrow.

Where I get tired of being strong and slogging through life without my best friend.  I get tired of finding the blessing in her loss, in appreciating what she gave me when she was here.  I want her here now. I want to call her and pour my heart out to her and have her pour her heart out to me.  I want my friend, my Heidi, and no-one else will do.

There are days likes this when grief lives, when I am tired of seeing loved one's descend into horrible progressive illnesses with seemingly no cure.

I am filled with rage that a horrible illness took away my dad's mind, before it finally took his body.  I get so angry at a health care system that cannot cure my loved one.  It kills me that every day for her is a struggle with no hope in sight.  My rage at seeing a beautiful person robbed of hope and a future just fills me up with an abiding sense of hopelessness.

Sometimes the flip side of grief is rage.  Rage at all that has been taken from me and my loved ones.

And it may sound like self pity, but sometimes I just have to sit with it.  Because it comes unbidden and it seems there is nothing to do but wallow through it. 

There are days like this when being strong seems exhausting.  Where hiding in a hole seems like the best thing to do.  But, somehow I just keep living; knowing that I am not alone.  There are millions are out there dealing with similar feelings.  But, somehow, this thought also fills my heart with sadness.

And in our culture, we rarely make space for grief.  We go to a funeral, we move on.  Someone has an illness that robs them of things, mentally or physically, and they are expected to just keep moving on, hiding the grief of all they are losing. Often, especially for the latter, there is no community supporting them.  They suffer alone. People are frightened of reaching out and often, don't know what to say.  So, they don't reach out and the grieving person is left to suffer alone.  Little do people know, that sometimes all grieving people need is a listening ear, a hand to hold, or even practical support, like meals. 

We learn to be stoic and not ask for help; to hide with our pain and put on a brave face.  Then, we learn to  numb out, knowing that it's not acceptable to express our pain.  There are no circles of support and many flounder, adrift, and sometimes turn to substances to relieve that pain.  We have few rituals to celebrate and suffer through our grief together.  There is little acknowledgment that grief is a spiral and there is NEVER closure. 

But, some days, things turn around.  The rage abates.  The grief lies there in the background, but not as prominent. And even on the hard days, there is beauty.  There are small blessings, like the beauty of snow.  The laughter of a suffering loved one.  Even when the grief feels like it will swallow me whole, there is a small light that keeps me making small steps to honor those I have lost, or make change for those that are still alive and suffering.  My grief will never die, but I do my best to feel it, while learning and growing from it.

I will not deny my heart the strong grief that sometimes engulfs it with sadness.  My grief teaches me how strong I love.  It teaches me how strong I can be, even when I don't want to be.  I refuse to find 'closure' because, for those of us who have lost someone we love deeply, that grief never goes away, we just learn to live with it and appreciate what we have lost.

Knowing what I know about grief, I try my best to reach out to those who are grieving, even if when it's uncomfortable.  Life is impermanent, unpredictable and sometimes tragic; which really sucks.  But, sometimes I have to just find a little sweetness, a little light to grab on to and keep moving.  Some days, there is no sweetness and little hope and all there is to do is feel it, knowing that the feeling may pass, even when the tragic loss does not change and the pain comes back without warning. The human heart is strong and sometimes all we can expect of any given day is to just keep living, embracing all the pain, the grief, the laughter, and the joy as they come,without expectation.