Wednesday, May 12, 2021

Fibromyalgia Awareness Day

Today is Fibromyalgia Awareness Day.

Fibromyalgia is having an illness you're not sure you have because the diagnostic criteria are so vague.  And treatment? There really is none and a fun fact about fibromyalgia is that it makes you more sensitive to medications so you can't take most meds due to severe side effects.  

It's all over body pain, constant brain fog, sensory sensitivity, irritable bowel syndrome, TMJ, and overwhelming flu-like fatigue. (and more!) When I say 'brain fog', a lot of people have no clue that means that it's super hard to focus, concentrate or remember just about everything, and our brains don't work the way they used to.  

It's people questioning the validity of it and at the same time, having no clue what it is.  People don't bring casseroles or arrange meals or reach out to folks who are in the midst of fibromyalgia flares.  And that's ok because it doesn't really ever get better, so that would be a lot of casseroles.  

Finally, it's not being able to work and feeling so broken by that fact alone.  It's not being able to qualify for our country's supposed safety net, Social Security Disability because the medical establishment doesn't document this condition well, nor does it know what to do with it.  So, not only are you broken in body and mind, but you're also freaking broke with no end in sight.

My heart goes out to all of us who suffer from this baffling illness.  May we find some comfort in our days.  



Wednesday, March 24, 2021

It's All A Freaking Nightmare


For several years now, I have advocated for my medical care to save my life both mentally and physically.  I have suffered for years now with deep daily physical and mental pain with very little relief.  Answers and meaningful treatment are hard to come by for many of us.

I have had many physical symptoms that are often moved through the medical system with testing, and eventually, I'm told "everything's fine" and then friends, relatives and medical providers say 'oh, that's great'.  No, it's not great when you have unexplainable things like a random racing heart, sometimes severe upper right quadrant abdominal pain, severe daily bowel and stomach issues, severe chronic joint pain in several joints, unexplainable severe fatigue, progressive hand weakness and so much more.  (and that's just some of the unexplainable stuff)  When you don't know what it is, you can't treat it well and the feeling that elicits is devastating hopelessness.  My significant cervical spine issues are one of the few issues that can be seen through testing, but surgery made things worse and now I'm left with no answers and adjacent disc disease from the fusion surgery.  

(Side note: I have also received diagnoses from specialists that my primary doctor or my pain doctor sent me to, and then both of these doctors just ignore the diagnoses completely and don't address them even when I bring them up. )

So many times, I hear the phrase, 'get help, treatment is out there' in relation to the mental health system.  This isn't true for many of us.  The system is broken.  Many of us have unbearable side effects with meds and it is SUPER hard to find a therapist that actually helps.  And many therapists do not have the cultural competence to work with people with disabilities or chronic illnesses.  To reach out for help and be met with complete misunderstanding and in some cases, incompetence, is one of the loneliest things I've ever been through.  

I grow tired of the daily worry of long-term financial stability. (The Social Security system isn't built for people like me with chronic, hard-to-diagnose conditions. Will I get SSDI? I doubt it.  Can I work?  Not right now and I don't know when, if ever) It's been over one year since I applied for disability and doubt that I will find out anything positive anytime soon.  Our Social Security system also makes it difficult to work while you wait(even a little bit).  If they deny people because they can use a computer or watch TV, they most likely will deny anyone who tries to work.  

I know that many people like me are living on the streets of America right now.  I should be more grateful, but making comparisons has never helped, nor has gratitude.  

I know I must not be the only one. I want to be able to work.  It is not 'fun' to hang out at home knowing you cannot work or be productive.  It's also pretty freaking lonely.  

It is difficult fighting this battle that few understand with very few allies. I often don't want to talk to others about it because they grow sick of hearing this pain that is my daily life(and the fact that it doesn't get better).  After years of trying so many treatments and providers, I have realized that physical and mental health providers often have little clue what I am going through with no clue how to help. Even the ones I have considered thoughtful and decent don't seem to want to delve further into certain things even when I ask.  (like losing the use of my dominant hand.. they don't seem to want to look any further into that at all and keep completely ignore it when I bring it up because one test that was done turned up no answers) 

And then, watching a close loved one go through the exact same struggle with our broken system is just too much to handle. 

I go on for those I love and who love me and don't want to lose me in their life.  And for the animals that depend on me.  

In a society that values success stories and pulling oneself up by one's bootstraps, my story is not an 'inspiration'.  Even folks with disabilities don't want to hear others complain about the difficulty of disability.  The disability community talks of disability pride and more. But, sometimes, when the system is so woefully inadequate and throws up so many barriers, disability just sucks.  

I know that thousands of people like me are out in the world fighting this same battle.  Perhaps even more now that folks are experiencing long-term complications from COVID 19.  If I had the energy, I would fight to change all of this, but that is why we are forgotten: many of us don't have the energy to keep fighting.  Some end up homeless.  Some end up dead.  Many do fight and keep trying to change things and hopefully, someday we will change the system with our collective small efforts.  


Sunday, September 13, 2020

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.  


Monday, June 8, 2020

Yet Another Mental Health System Rant

Just heard a bit about another segment of the healthcare industry that I hadn't really had much experience with except with the occasional client and it got me thinking.   And wow, has my troubled mind gone off on a tangent about it.  So, I decided to go ahead and write a bit about it, even though my last blog post only received a measly 24 views.  :)

When one finds a small lump and it is determined that it needs a biopsy, one goes for a biopsy. During this whole process, one is treated with great respect and friendliness.   At that point the cells get read by pathology.  If the result is cancer, ones tumor is screened a whole team of experts who decide on the next possible treatment.(in my community's main healthcare system)  Additionally, one is assigned a patient navigator who helps one navigate the future treatment and appointments.  They will even go to doctor's appointments with you and follow you until remission or death.

Due to great strides and money into research for cancer, there are many cancers that are highly treatable and have good success rates if caught early.

Contrast this with treatment resistant mental illness which often has higher equal or higher death rates than certain cancers.  With treatment resistant mental illness, one is shuffled from one provider to the next.  Sometimes you are treated by someone who has no expertise in the field.  Imagine a cancer patient only being treated by their primary doctor with no input or time with an oncologist. Some therapists say that certain illnesses are too difficult to treat unless they are better controlled by meds, but then the meds aren't working either so you are left in hopeless limbo land.  Some doctors then might try to shuffle you on to ECT where one can become severely brain damaged. There is no team of experts that tries to figure out the best course of treatment and one receives NO navigation to help you with the system even though ones decision making and thinking skills are highly impaired by the illness. One is often treated in a condescending and disrespectful way by many professionals who get frustrated that one isn't 'getting better' and that their magic bullets are  not working. And since the treatment is often initiated in our medical system, providers are not taught to help people connect with solutions that might not fit tidily into the medical model. (like trauma treatment or community resources)

These illnesses are NOT highly treatable and many go from medication to medication to therapy to therapy with absolutely no relief.  In the US, 41,760 women died from breast cancer in 2019 and 48, 344 people died from suicide.

When one gets diagnosed with cancer, one gets casseroles, sympathy, and often an outpouring of support.  When one gets diagnosed with a mental health condition that is not very treatable one gets pushed away by their community who certainly doesn't want you to talk about your condition or know how to support you so they choose just to ignore you or let you fade away.

Those of us with these types of mental health conditions need a team approach that is holistic, respectful and kind.  We also need navigators that will help us connect to medical and community resources as well as find alternative non-medical solutions when there are no good medical solutions.   Treating our conditions deserves the same respect, time and effort as treating cancer. Instead of isolation, we need community and help with navigating the system just as much as any cancer patient.  It enrages me to see the disparity in treatment between the two, both on a community level and a medical level.

Sunday, May 17, 2020

Disability Musings During a Pandemic

Imagine learning you won't be able to work and it is unknown when you will work again.  Not hard to imagine right now, is it?

Now, imagine knowing that there will never be an end to the situation that finds you out of work and that you will never return to work.

 Many of us with disabilities find ourselves in this situation and most people don't even notice or think about the devastation and grief that this causes for us.  There is a feeling of no ground underneath our feet, a feeling of deep fear and dependence on a system that we discover quickly doesn't work well at all. Additionally, we are taught that our work IS our worth and without it, we often feel and are taught that we have no worth.   In fact, doctors and others, are often uncomfortable acknowledging our inability to work because they somehow think we are being manipulative and just lazy.  This reaction from people in and out of the system, friends, family acquaintances reinforces that feeling of worthlessness and creates feelings of both shame and hopelessness.  In my 20 years working with people with disabilities, the majority of people I have met who find themselves in this situation want to work and grieve the loss of who they were and who they hoped they would become.(myself included)

Many people I have educated about the system have some assumption that there is a safety net for people with disabilities.  There really isn't much of one.  For many, it takes years to get a positive disability decision from the federal government and while they wait, they often have NO income.  In our state, some qualify for something called Aid to the Needy Disabled that they can get while they wait for their decision.  The amount is $217.  Imagine knowing that you can't support yourself and knowing that you will will either get nothing for a a few years or a measly $217 with a pittance of food stamps.  Many with disabilities end up homeless for this very reason. (imagine trying to find a place to rent on $217/month) And even if they get federal disability, the amount is not enough to afford rent and subsidized housings lists are years and years long. This situation will only be worse now with the pandemic and state and federal governments being completely strapped. It is not exactly a situation one enjoys finding oneself in, nor is it any kind of a situation where one feels secure or safe or even able to fulfill basic survival needs.

Not only is there little to no safety net, but for many of us, there is no treatment or cure for our conditions.  For many conditions the 'treatment' is sometimes worse than the cure or the 'treatment' does nothing to help and often creates other conditions.  (for example, psychiatric meds that cause conditions such as tardive dyskinesia or diabetes) Many become uncomfortable with our lack of ability to comply or fit in with regular society and think we aren't trying hard enough to find our miracle cure or that we have given up.  When, in fact, many learn that reaching out to our medical system often just creates more and more frustration and depression as one realizes one won't be returned to that elusive 'health' that society so wants for us.  Many of us might be able to work if we lived in a system that had more flexible work options and support to help us contribute through work or volunteering.  But, the system doesn't make this easy when, for some, you can lose health insurance if you work, or lose the benefits that took years to acquire.  We have systems set up to help people with disabilities find and keep work, but these systems are often overloaded and many get very little help from vocational rehab and other types of work assistance. 

It all leaves one feeling like there is no hope or reason to move forward when homelessness or complete financial devastation and bankruptcy may be the only answer.  And even if it isn't, the feeling of dependence on charity and others is depressing at best.  When I hear all this talk about the hope of returning to work and returning to 'normal', remember that for many of us, there is no 'normal'.  The normal for some might be a daily feeling of terror when one leaves one's house if one's skin color is anything but white.  The normal for some of us might be the feeling of fear and panic about how we will survive waiting on benefits that we don't even know we will get or how long we will have to wait. Or, most appallingly,  the normal of knowing that the elderly and the disabled were far too easily thrown under the bus by many in our society during this pandemic as a 'necessary' sacrifice for our economy.  And finally, the normal of knowing that we are deemed unworthy by a society that finds worth only in work and in 'persevering' in spite of obstacles. Some of us have tried to persevere, but for some, just surviving another day is persevering. 

This is all I have on all of this right now.  It leaves me with something I've known all along.  Our society does not truly care for the most vulnerable.  In fact, we are hidden away and, especially if we have mental disabilities, we are not spoken about.  Right now,  some just hope to kill us off.  People want to pretend there is a safety net so that they don't have to reach out and care and help others around them or even think about those who are faced with little to no safety net.  We want to pretend that work is what makes a person's worth instead of acknowledging the inherent worth in all of us. When you return to your new normal post pandemic, please don't forget that there are many of us out here who are, at times, unable to leave our homes, to participate in 'normal' day to day life, to work, to 'produce'.  We are here, we deserve more of a safety net and we are worthy of life and love.

Thursday, February 20, 2020

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.  

Thursday, February 8, 2018

10 Years Gone

My friend.  Will this day or other triggering days in February ever change for me?  Ten years later, I can still feel absolutely gutted by your loss.  You were more than a friend to me, you were a soul sister.  And I know that I will never have that kind of bond with another human.  This has made me feel completely unmoored since the day I knew you were gone.  

The days go on.  I have lived 10 years of life since you died.  10 years filled with other kinds of losses and other joys.  I have lived these 10 years with your friendship, only one sided and in my head.  I have ‘felt’ your presence at times and dreamt about you.  

The memories bring me joy at times and laughter.  I miss that shared history and with you, I miss it a lot, because your memory for details was always much better than mine.  You were a consummate storyteller who brought vivid detail into the minds of those who you were sharing the story with.  

Grief has often gutted me and led me into many dark paths where I have come close to being completely lost. My lifetime propensity towards depression has often been triggered by the grieving of you and the grieving of the other losses I have experienced since your death.  I do believe that all of this has taken a physical toll as well and I sometimes wonder how much more of a ‘toll’ I can handle. 

It is almost impossible to describe this grief journey in words.  Somehow, I have managed to make it this far without you.  I have tried to live in a way you would have been proud of, but have fallen short many times.  There are things I have done that I know you would have been just shaking your head at, but I did them anyway. (not much different than when you were alive)

I love you, my friend.  Although you were a super private person, many other people now know how much I love you every single year to the point that many on social media surely want to unfriend me due to my many maudlin grief posts.  

I try to honor you by being present with my kids.  By truly enjoying the natural world in spite of my physical issues.  By loving books as much as you did.  By being a friend to others when I can be. 

Your friendship taught me more than anything, the value of friendship.  Being a good friend is a lifelong ‘value’ of mine, but one that is so difficult to fulfill due to my physical and emotional limitations the past few years.  I want to be the kind of friend you were to me.  To listen to who each person is and reflect back to them the ‘truths’ that they know inside but sometimes refuse to listen to.  To be a friend who helps others see their own worth when they can’t see their own.  To be able to laugh together with someone to help things seem just a little bit lighter.  To touch and love people the way you loved me.  

The ironic thing is that type of trust and friendship is so hard when you lose someone suddenly.  Your loss ripped out a chunk of my heart that will never grow back.  And shut down parts of it that are still very hard to open again.  

I wish that you were here to know my 4 crazy dogs, to see the amazing humans my daughters have become and so much more.  But you’re not and acceptance will never be there, but I am just learning to carry the pain somehow and keep living.  



Sunday, April 23, 2017

On the Eve of My Daughter's 25th Birthday

25 years ago today, I started on a grueling and rewarding parenting journey. This journey has blessed me with some of my highest highs and lowest lows.  It's always a learning experience, but some of these lessons have been gutwrenching and feel often like my heart is being broken sometimes almost daily.

They say you are only as happy as your saddest child.  I have to say that most of the time this is true.  This becomes even truer when you feel like there is absolutely nothing more you can do to help.


Imagine being 25 years old and unable to leave the house on most days due to horrible fatigue, pain, and anxiety.  Imagine having your sleep schedule completely flipped and being unable to even go on a walk around the block on most days.  Imagine going to doctor after doctor and taking medication after medication with not one thing helping whatsoever. Imagine having no-one understand.


After telling a doctor or others the things I have shared above, I cannot tell you how many times people have asked me if she is working. The ignorance of this statement floors me.   We are telling them her illness is so overwhelming she cannot leave the house on most days and this 'work' question shows me how little understanding they have of anything we are trying to explain.


Imagine feeling, as a parent and as the daughter who is suffering, that it is impossible to explain and how this increases feelings of abject isolation and aloneness.


Imagine watching all of this as a parent and feeling hopeless to change anything.  Imagine being reliant on state health insurance and feeling so incredibly guilty for not choosing a career where I could have more wealth, where I could throw more money at trying to find her solutions. But, I am not wealthy and the answers are probably few anyway. But the guilt I feel at not being able to afford more solutions is intense and wrenching.


Imagine watching others of the same age start careers and families only to know that my brilliant and caring daughter may never have either career or family.


Today, I pondered, if I should just 'radically accept this horrible disability and give up hope of her ever having any kind of a different life.  After all, this has been ongoing off and on for 10 years with steadying worsening of symptoms, instead of improvement.  I don't know that I can accept that this kid, who has much to offer the world is just stuck in a small room in a very small world the rest of her life.


Talking to people about this has become a nightmare.  The other day when leaving yet another message for a grandparent letting them know she couldn't see them, I broke down in tears.  This message has happened over and over again and her grandparents struggle to understand. I know they also feel equally as hopeless and powerless to change this circumstance for the granddaughter they love dearly.  Talking to friends about it gets old as well as nothing changes and I know they don't understand unless they, too, have been there and most haven't.


My heart breaks today, the day I started my labor with her to start her journey into this cruel world. It wears on me day after day and it colors my perception and every aspect of my life and relationships.  For our little family of 4, it is heart wrenching and effects all of us in different ways.  For my girl, I can't even imagine how painful this must be. But, for the rest of us ,we also hope daily for an end to this nightmare while also being weighed down and exhausted by the pain of it.


I don't know how to tie this up with an easy ending.  There is no easy ending in this case. Some of this heartache can be tied to failures of our healthcare and mental healthcare systems. But, that is for another post. Perhaps the only thing to do is keep hoping that around some corner there may be an answer.  In fact, this is part of why I talk about it on social media, on the outside hope that maybe someone somewhere will be able to help or have answers.  So, far, I have had no luck.  But, for now, all we can do is treasure what she gives us when she can.  Her vibrant, creative, caring self.  Her movie loving, art loving, family loving, amazing writer self.  She is still those things, even when she cannot share them with many.  And all we can do is keep loving her and each other through it all. Happy 25th my girl.  May life get easier for all of us.  




Friday, January 20, 2017

We will not be silent-1/20/2017

Today is January 20, 2017.  The day of the inauguration of Donald Trump as the 45th President of the United States.  I have not written a blog post in over a year. But, today, I feel the need to write something, to say something.

Since the election, I have felt heartsick.  My body actually mirrored this emotional heartache by becoming more fatigued, in pain and depressed than I have ever been in my entire life.  For those who know me, that's a bit of a frightening thought as I almost died from depression 30 years ago this spring.

I hurt.  I hurt for my daughters.  All three of us have fought to recover from the legacy of abuse and manipulation by someone who has manipulated, neglected and emotionally abused them all of their lives, and me, most of my adult life.  Even though my contact is completely limited with him, he still haunts me.

As I have written before, our trauma lives.  Our trauma lives in the daily severe physical and mental sickness of my oldest daughter.  Our trauma lives in my pain, in my fatigue,  in my inability to be vulnerable, to open my heart to others when I need to.  Our trauma lives in my youngest in ways I probably do  not know or understand, because she has chosen to push forward in life with single minded positive determination.

And now, we have elected someone who reminds us so much of this abuse and manipulation we have endured. My ex may be on the fringes of society, but he shares many characteristics of Donald Trump. The belief of being 'special' or unique, the entitled attitudes, the inability to self reflect and instead blame others for their problems, envy, and emotional manipulation are all characteristics they both share.  Additionally, my own history of sexual violence is triggered by Trump's many attitudes, comments and actions towards women.

I dreamt last night of one of my heroes, the poet, Andrea Gibson, someone who gives voice to all of these issues in ways I can never dream of doing. Perhaps it was my subsconscious pushing me forward into greater creativity, telling me how to fight this very real threat that is upon us today. I know that both of my girls also have deep wells of incredible creativity within them. All of us, with our collective creativity can fight this threat if only we can avoid succumbing to escapism and fight with all of our creative hearts.

When the three of us see our new President, we can't help but be triggered as millions of other men and women probably are also triggered. But, I know all of us cannot be broken by this.  So many of us have suffered at the hands of a narcissist and survived and sometimes thrived in amazing and courageous ways.  Others of us have given up. For those voiceless ones who are out there and feeling hopeless. I stand with you. I am you. But, somehow deep inside I know we can all find the hope and the courage to get through this just have we have learned to get through and confront our own abuse. We must push forward and figure out healthy ways to resist, to confront abuse when we see it and keep working towards a healthier future for everyone; a future that includes a societal recognition of the deep wrongs of abuse and a commitment to NEVER let another abuser rule our country, be it in Congresss, the presidency, or local government. We cannot excuse this, we cannot normalize this, and we will not be silent.

Tuesday, January 19, 2016

Guest Blog From A Friend: Taking Crazy To A Whole New Level

Talking to anyone about my inner demons is hard for me. I talk to myself plenty. I have long-winded dialogue with myself almost every minute that I’m not conversing with another human being. A lot of those inner conversations are ugly, unvarnished truth. However, admitting my vulnerabilities to others has never been part of my make-up. From where I sit, the world, particularly in the individually-driven country in which I live, tells us to handle our own business. I try not to pry into the personal affairs of other folks unless I’m asked to, and I generally don’t like it when people pry into mine. 

It’s a glitch in my programming. I’m not much of a talker unless I really, really trust the person I’m sharing with, and there aren’t too many folks I trust. That’s somewhat unwarranted, I suppose, but the people I open up to seem to understand.

When my dear friend started this blog, part of me shuddered at the notion of her openly sharing, in vast detail, her struggles with not only addictions, but various other emotional and mental struggles. I wanted to caution her to keep her demons close to her vest, but she arrived at an epiphany long before I did. She called it like it was, which filled me with admiration and awe, but also with a tremendous fear.  The potential stigma - at least that’s what I perceived it to be - seemed so great to me that I feared what I thought would be the resulting damage to her anonymity, privacy, and reputation. I saw the inherent value in her sharing her own struggles so that others might not feel so alone, but my brief flirtation with following suit and writing my own story was quickly tempered by trepidation.  I resolved to follow her lead at the time, and then rapidly retreated into the safety of hiding my own significant “craziness.” After all, I rationalized, I was doing OK. I was sober, getting by day-by-day, maintaining a comfortable façade of respectability, and rationalizing my near-daily anxiety as just “something to deal with.” Sure, I worried about things, and I checked the stove, lights, and doors a few more times than normal before leaving the house, but I was working hard, exercising, and doing my best to be of service to others. My internal fears and obsessions were nobody’s business but my own. I didn’t feel like there was much reason for me to open myself up to the potential ridicule from those who wouldn’t get it. 

I can no longer, in good conscience, be governed by that fear. You see, about a month ago, my mind decided it had had enough. Out of nowhere, an overwhelming remorse and shame for my past met with an intolerable surge of anxiety about my future, and the ability to maintain the facade became not only a difficulty, but a complete impossibility. My pride in four years of continuous sobriety suddenly became meaningless as I tried desperately to find some way to quiet the steady drumbeat of voices in my head. I tried many responsible ways to keep at bay what was quickly becoming a monster that was all-consuming. I walked for miles, praying the entire time for the pain to go away. I got down on my knees three or four times a day, praying earnest and pleading prayers that brought little to no relief. I tied literally dozens of flies at my work bench for trips to the river with my fly rod that couldn’t materialize, thanks to the frigid cold. I cleaned my house incessantly, laundering clothes that hadn’t been worn. I volunteered for extra work at the office, although my lack of concentration should have dictated that I choose the opposite course. The solution that I once knew to work so well - a stiff drink or two - began to occupy my thoughts almost as much as the loneliness and anxiety. To put as fine a point on it as I can, my mind and soul became hopelessly sick. In retrospect, I’m disappointed in the choice I made, which was to reach for a solution that I knew would provide at least a temporary respite. When the respite was over - too quickly, I might add - I was back to self-hatred and hopelessness.

I’ll admit it without reservation. A constant flow of booze long ago became the only solution that ever worked to stop the squirrels from sprinting endlessly in my mind. At the risk of suggesting that alcohol is a solution to anxiety - which I am definitively not doing - it always seemed to work. Obsessive worries always disappeared when I got good and drunk. This occasion was no exception. The first gulp of vodka I took brought instant relief: a nice, warm glow in my chest, a comfortable burn, a demonstrable slowing of my heart rate, and most importantly, the damn squirrels stopped running so fast. I don’t know about you guys, but when the squirrels in my mind start running and don’t stop, getting them to at least slow down causes me to cast reason aside. Never mind the damage I’m doing to my liver, stomach, heart, esophagus. Who cares? I just want some peace.

Peace, of course, never lasts very long when it’s alcohol-induced. Pretty quickly, it became obvious to me that I was on the course for death…again. By this point, I had skipped a week of work, and just assumed I’d be fired, not knowing that I had two bosses who were worried sick enough about me to call the police and send them to my house to check on my welfare. A co-worker suddenly sent a request to be friends on Facebook, with a simple note of “concerned about you.” I was so far gone that I waved off the officer at my door with some lame excuse about just being “under the weather.“ I got to thinking that dying wouldn’t actually be so bad. Waking up every day with a new worry or obsession in my head had grown to be an exhausting routine, and now I‘d essentially cast aside everyone and everything - a good job where my bosses clearly cared about me, a family that has never given up on me, and relationships that I had spent four years cultivating and treasuring. 

The resulting shame led me to a conclusion that I never in a million years would have expected from myself, and that was that life was no longer worth living. A mere two months ago, I’d have told you that I was happy. Then, with no warning, obsessive thoughts came from nowhere, and with no comfort level to share them with anyone, I had quickly spiraled into an unwarranted sense of foreboding and hopelessness. The thoughts had entered my mind without any warning, and I couldn’t let them go. The only way I knew to stop them was to drink them away, which doubled my shame and put me into a familiar cycle of self-destruction. Feeling as though I had thrown away everything I’d worked to achieve, I started thinking of the softest way to simply disappear. Suddenly and inexplicably, I no longer wanted to live, let alone fight or struggle to simply endure what was temporary, but certainly not unfamiliar mental anguish. 

With no firearms in the house, I found myself having to think creatively. I hopped online and started researching how to tie a proper noose. I couldn’t find any rope, so I thought maybe some excess telephone cable might do the trick. In my state of intoxicated apathy, I found myself unable to get the noose tied properly, and in any event, there didn’t seem to be any beam or bar that would support my weight.

I tried cutting my wrists, but I simply didn’t have the nerve to go deep enough, and the knife I tried seemed frustratingly dull. The outer scars are faint now, visible only if I look carefully enough. The inner scars will be with me for some time.

I finally surmised that taking enough of any kind of pills would bring about the result I thought I wanted at the time. I didn’t have anything really powerful in the house, but I did finally find a bottle of old, expired blood pressure medication that I had been prescribed long ago but rarely bothered to take for some reason - benign neglect, I suppose. I swallowed a handful with a vodka chaser and waited for the end, wondering the entire time if it would be enough, or would simply add some vomiting and diarrhea to my already pathetic condition.

Here’s where something happened that was either spiritual or simply medical, or maybe a combination. I briefly left my house for no other reason than to take one last look around outside. After a half hour or so, I had to return quickly, as the toxic brew churning in my gut felt as though it was going to expel itself from my body. I raced to my bathroom and there, in black ink, was a long paragraph of text on the bathroom floor. It was a message from my father, and not just a simple “don’t do it,” but a long letter, written in stark detail and demonstrating intimate knowledge of the issues that had been plaguing my mind for days on end. I can’t remember the exact wording, but I can best describe it as a loving rage, questioning on the one hand why I would choose such a selfish solution, but including an offer to walk through whatever fire was burning me up inside. I glanced to the right and saw another long message from my mother. I remember even less of what her letter said, but it was clear that my death would take a piece of her with me. I began to walk around the house, and suddenly realized that the carpets, tables, doors, and walls were covered in messages from my two oldest nephews, my siblings, friends, and even some that were signed by people I’d never heard of or met. Members of my twelve-step home group had left lighthearted notes designed, I assume, to ease my burden in the only way they knew. In all, they were pleas for me to reconsider, expressions of love, suggestions for new career paths, and personal stories of anguish-turned-triumph. 

I made it to the front door, and read one last message, written by my friend and author of this blog. Unlike any of the other notes, this one expressed a vivid, prescient understanding of exactly what I was going through. It was a message of empathy. Not sympathy, but empathy. She understood, and her note urged me to find another way. If my current approach, which had worked so well but no longer seemed to do the trick, wasn’t the way, then certainly there was something else to be tried. When I saw her later, in the days after my attempt at stopping the damn squirrels for good, she simply encouraged me to “get at the root” and seek the right kind of help.

I pulled out my cell phone to take pictures of the letters, and just as suddenly as the messages had appeared, they vanished, and I sunk into my easy chair, exhausted and confused.

As it became clear to me that my attempt at drifting away into irrelevance was going to do nothing other than make me sick and more twisted, I started trying to process what had just happened. At first, I suspected that a friend and mentor of mine had intuitively known what I was going through, and had orchestrated the entire event using some kind of special ink that would disappear after a certain amount of time. When my sister and brother in-law suddenly showed up at my door and exposed my obvious intoxication to the light of day, I opened the floodgates and confessed to my days-long battle with my own mind. I began to quiz them as to how everyone had gotten in the house so fast in my brief absence and written such detailed notes to me in disappearing ink over every square inch of my home. Obviously, neither had any clue as to what I was referring. I expected anger and dismay. Instead, I received kindness, but saw sadness and worry in the eyes of my sister. 

I’m guessing now that the messages, at least in logical terms, were simple hallucinations. Still, I have to wonder if the God I believed in, but lacked faith in, had a hand in all of it as well.

After a night in the hospital, I spent the next week with family, recovering. At long last, I began to share the worries and shame that had started what now seems like a ridiculous chain of events. What I got from this was not ridicule, but perspective. The sins of my past were overblown, they said, and in any event had been forgiven. The worries about the future were surmountable at worst, and opportunities for growth, at best. I quickly saw things in a new light, a light that would have shined vividly before any damage had been done had I bothered to simply tell someone. In the weeks since my nightmare, I’ve had the benefit of medical care and healing, with the opportunity now to seek real professional help for an obvious, if undiagnosed, mental illness. 

The real point of all this, if there is one, is not to simply recount a horror story and admit that I, too, suffer from mental illness. I’m extremely fortunate to have family, friends, and resources to now move forward and not only learn, but heal. My siblings both work in mental health, and they’ve gone to great lengths to point me in the right direction. In plain English, I’m lucky. I wonder what would have happened had I not had the chance to finally tell someone, without judgment or fear of aspersion, troubles that had seemed so real to me, yet so manageable to an objective listener. In my travels, despite my own obvious sickness, I’ve met people who have the same demons, but no family to share them with. I’ve taken other alcoholics to the hospital, desperately hoping they could get some real help, only to watch doctors and supposed substance abuse “counselors” cast them back into the wilderness without so much as checking their blood pressure or blood-alcohol content. During my recent stay in the hospital, the security guard charged with watching me was by far the most compassionate, kind person I encountered during the entire process. He brought me food, and apologized profusely when the kitchen sent up a turkey sandwich instead of the roast beef I had asked for. I couldn’t have cared less that my order came back wrong, but the man actually wanted to send it back so I could have roast beef! I laughed and declined, so he sat in the room offering encouragement as I tried to get him to see the writing I was seeing on the hospital floor – clearly more hallucinations that were visible only to my eyes. I was uplifted by his kindness. That man did more to start me on the road to healing than anyone else, simply by showing some obvious, heartfelt compassion for the town drunk. 

In her post entitled “My Daily Nightmare,” my friend wrote: “Other countries have more expanded options for people with mental health issues…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…community supports are often few.” My hope is that recounting my story might serve as a small bit of that community support. I want people with troubles to share them with supportive family, if they have them. I want our society to start taking mental health seriously. Not with derision, but with compassion. If my story can give just one person some hope, then I’m overjoyed. I hope others will set aside their fears and share their own stories. It’s high time that the stigma of being “crazy” goes away, and if my story can help move that process forward, it’s well worth any remaining apprehension I have with sharing it.

In the weeks since my own sudden, unexpected nightmare, I’ve alternated between hope and hopelessness. I’ve taken far too many over-the-counter sleeping pills, which seem to do no good whatsoever and, I think, are simply tearing my stomach apart at this point. Anxiety rears its head nearly every morning at 5 a.m., like clockwork. My heart races, my pulse quickens, and I try my best to breathe deeply and go back to sleep. Usually, I end up just getting out of bed and starting my day. I spend my days working as much as possible, because it seems like that’s the one thing that can distract me enough to make the days manageable. Quite frankly, there are days where I ask God to spare me any further time here. Somehow, I get the impression that those pleas are being deferred because I’m supposed to still do something better. 

Still, it helps to know I’m not the only one. In the recent days, I’ve simply started to share what happened to me with people, few holds barred, in matter-of-fact terms.  Both bosses, and several co-workers, have shown nothing but compassion and thankfulness that I’m back at work. Some have even opened up about their own struggles with Bi-Polar disorder, depression, and anxiety. 

As I’ve taken the time to get this off my chest and share it with the world, I’ve been trying to think of what the overall point has been. Maybe the point has just been to put it out there in hopes that someone else won’t feel so alone. Maybe the point is that there shouldn’t be shame in seeking help. Maybe the point is that there just flat out isn’t enough help for us “nut-jobs.”  Or, maybe the point is that there is help, but we just don’t seek it out. I don’t really know for sure. What I do know is that pretending it wasn’t an issue didn’t work for me, and succumbing to the idea that it’s shameful isn’t an option any longer.

To those reading this who suffer, I wish you all the things I wish for myself - some joy, contentment, and relief. Know that my heart aches along with yours, because in many respects, I’m there with you. Our demons may be different, but our pain isn’t. Maybe sharing it with each other is the best medicine we can hope for. I hope I’ve done my part.

Thursday, August 13, 2015

12 Steps to Nowhere

Years ago, I suffered a loss so incomprehensible that I could not take the pain. I medicated myself with alcohol and tried to numb out the pain as much as possible.  For years, my drinking was never 'out of control', just a daily evening dose of medicine to numb the pain.  I started to feel this 'medicine''s effect on my mind and body and realized I had to do something or I would continue to numb myself into a slow death.  In looking for 'help', I chose to try one of the only methods I knew of, Alcoholic's Anonymous.  Although, my story was not the story of many 'in the program', I learned to do what people told me to do and 'look for similarities instead of differences' and slowly began to be slightly brainwashed by something that never quite 'fit' for me.

With lack of any other available options, I chose to go to a place where I was told this was the 'only solution' to my addiction. Before this, I wallowed around scared and alone, not knowing where to turn.  I entered AA, vulnerable and sad.  I did not know or understand that perhaps if I focused on my underlying grief and trauma issues, I could live a fuller life.  Instead, I went in to something where alcohol and the 'ism' attached to it, became part of my 'character' in this insidious way.  I struggled through in these rooms with concepts that never quite made sense to me.

I stayed because I love connecting with people; because I was lonely.  I stayed because a gentle man worked through the steps with me in an openhearted way, patient and nonjudgmental about my questions.  I started to heal a little, with time and with my own work, from the grief and pain that brought me here.  I watched some 'get it' and take on this program with the fervor of a Southern preacher.  And sadly, I watched some come in and out sad and vulnerable, thinking that no matter how much work they did, they just couldn't quite get it. Seeing these people who worked hard, but could not stay sober,  broke my heart. It made me wonder if there was another way for some and that instead of saying 'it works if you work it', maybe the saying should be 'if it doesn't work try something else because your life depends on it'. I started to question, more and more. I started to question many of the steps as they did not fit with much that made sense to me on a deep level.

I went in with help for my addiction and was told I had a 'special type of personality', that my make up was vastly different from the 'normies', as they were called.  This puzzled me as my experience showed me that anyone can become an addict and that many of these 'special' traits that were talked about were also experienced by people who were not addicts.  My pain and grief had led me to numb out with an intoxicating substance. This did not make me unique or different from people who numb out in other socially acceptable ways like TV or video games. My trauma, my grief, my resentments were things that were universally felt by addicts and non addicts alike.

When I struggled with depression and anxiety, it filled me with deep discomfort to hear others in the 'rooms' say that AA was the only way and to scoff at therapy and psychiatry.  These people were not the majority, but their attitude towards outside help could make a deeply vulnerable person ashamed that they could not deal with everything with AA and the 12 steps.  They implied that someone who needed outside help was just not working the steps hard enough.  I firmly believe that this is one of the most destructive aspects of AA and other offshoot 12 step programs.  It could be literally killing people who need more help than the 'program' can offer them.

I now know, from my 4 years in and out of the program, that I saw the great value that came from connecting with others with similar problems. For some, the connection to faith and spirituality was life transforming.  For others, it was a baffling puzzle that never made sense. I saw lives transformed in the 'program' and I saw others that floundered. Central to this floundering, at times, was this inability to 'get' the deeply patriarchal religious underpinnings of this program.  For some of us, those ideas and concepts just do not work and trying to shame us into believing that they should is just wrong.

I knew what brought me here was deep pain; pain born of many traumas, many losses, much grief. This deep pain was often brushed over and disregarded as self pity, or 'terminal uniqueness'. I knew that these rooms were not addressing a lot of these deep pains or traumas.  This questioning led me to being in these rooms feeling like my head was going to explode, but feeling I must because I was told I had to. I was told I had a 'progressive disease'. Some took this idea so far that they believe their diseased character will just get progressively worse even when clean from the substance. I was told that if I stopped coming, I was bound to 'relapse'. Furthermore, that it is a given with this disease, if I relapse I will start using the substance worse than I used to and probably end up dead, in prison or in an institution. I was not told that a great majority of people who have problems with alcohol somehow 'mature' out of it and either move on eventually to moderate drinking or abstinence with no AA or specialized alcohol treatment.

Being clean of this substance did not protect me from horrible pain. Being in these rooms did not take away mind numbing debilitating pain and depression. Seeing others, who had many years of 'sobriety' be just as unhealthy, sometimes more so, than the newcomer, spurred me towards more reflection on what this all meant to me, to others. Things become clear.  A weight lifted, and I realized that I did have a choice.  I could change my relationship with alcohol just as I had changed my relationship with food many years earlier.  The 'rooms' were not what I needed, and I was now more aware of myself and knew that if I was drawn to self medication and numbing, that I might need something else, not some archaic program that made no sense to me. Not a higher power. But, my self will, harnessed and aligned and learning to fight for my own survival.  My self will was not the enemy I heard it was. It was something that could actually save me; because without this 'self will', I would not be here today. Nor would I have survived all the traumas that led me here.

In this country, our treatment of addiction and mental health issues is woefully inadequate.  For years, we have looked in the wrong direction with both, believing that 12 step models worked well(when the evidence clearly proved otherwise) for addiction and that pharmaceuticals were the answer for mental health issues.  For both, it is my firm belief, that the key to both, in many cases, is unresolved trauma, loss, and grief.  Further research has proven that it is also social connection and support networks that make the difference in both.(which, to me, shows why 12 step programs work for a lot of people) Years ago, I would talk to a friend about things I found on the Internet that were anti AA. Her question was why rail against AA? Why not just do your own thing and quit being so negative? For me, the answer is this: if there is just one person out there in the 'program' that hears what I say and feels less alone, then, I will have done what I set out to do.  If there is anyone out there 'in the room's feeling like their head is going to explode, that they just can't 'get it', my message is clear: find other things that work. Therapy. Exercise. Positive social connections. Fight for your life. Find treatment for trauma. Find treatment for grief.  You do not have to stay with something that doesn't feel right to you. There are other options. We,as a country, need to quit being so backward and recognize that addiction is a multi faceted experience with many answers.  If we continue down the path we are going without looking deeper at many options, we will continue to see tragic deaths of people that truly believed they 'failed' at the one answer they had and that there were no other answers.  Do we really want these deaths on our hands?



Wednesday, May 27, 2015

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.