More than Just a Faceless Number in the Pandemic

There’s nothing quite like those moments of enlightenment when you realize that your feelings and motives go deeper and are more personal than you previously realized or openly admitted.  Why do I care so deeply about people being responsible and staying home as much as possible during this pandemic?

Whenever I was asked, my first impulse answer was always that I didn’t want anything to happen to those I care about and their loved ones, that there are people in my life that are older or are immuno-compromised, friends who are considered high risk because they just got over cancer or who have just had a baby. I care a lot, perhaps too much at times, about other people, mostly because I know what it is like to struggle and suffer and I don’t want anyone else to needlessly go through any heartache or pain.

I spend a lot of time thinking about how much everything affects others that I often forget to consider my own personal situation. Perhaps I also struggle to consider myself among those who need extra protection, those who are determined to be at a higher risk, those in the biggest danger. I have come to see myself as a fighter, a survivor, and being lumped into that category is like accepting that I am fragile, weak, that I am less than the strong person I believe myself to be.

I have been through a lot in my life.  As a child, I endured every type of abuse imaginable.  Physical, mental and emotional abuse lent to my PTSD diagnosis.  Sexual abuse led to my doctors telling me I might never be able to have children.  Yet I persevered.

At sixteen, my abusive childhood culminated with my mother shooting my father.  I was bounced around among family members for a little over a year before finding myself on my own before I was even eighteen years old. Yet I survived.

Even though addiction ran in my family in the form of both drug and alcohol abuse, and trauma like mine often serves as a catalyst for substance abuse, I managed to avoid both and powered on.

I have struggled with severe depression my entire life, due in part to abuse and trauma, and partly due to a genetic mutation that deprives my brain of the substances it needs to adequately moderate my moods, yet I found ways to continue to function and continue to fight.

I have suffered much heartache over the years, from failed unhealthy and abusive relationships, to multiple miscarriages, yet refused to let any of it ultimately break me.

Cancer runs in both sides of my family.  It stole my mother’s brother way too young.  I watched as it slowly ate away at my father until there was nothing left of him and as it almost killed my mother.  Starting in my twenties, I have had numerous cancer-related health scares of my own.  I had two pre-cancerous atypical pap smears that required cryosurgery and was told afterwards that they were caught just in the nick of time.  In my thirties, they found a mass on the side of my breast extending under my arm that was deemed non-cancerous.  At forty, I had to have one of my ovaries removed because there was a large cyst on it with a fibrous mass inside.  Thankfully, the biopsy after my oophorectomy showed the mass to be benign.  And finally, a little less than two years ago, doctors found not one but two meningioma tumors on my brain.  Yet I continue on and refuse to lose hope.

I continue on because I am a survivor. That is what I do.  I keep going. I power on.  I fight whatever life throws my way.

And I do so with kindness in my heart.  I never want my own life experiences to make me jaded or cruel.  I know what it feels like to suffer and I would not wish my struggles on anyone else.  I try to always show others kindness regardless of whether it was ever shown to me in my own times of need.  I have always firmly believed that there is too much suffering in this world and it is our responsibility to be kind to one another, to watch out for each other, and to ease each other’s pain whenever possible.

And somewhere along the way, I rediscovered myself.  I found a miraculous inner strength, a renewed sense of purpose and even was blessed enough to have wonderful children and find a deep and true lasting love.  I have transformed my own pain into mental health advocacy for others.  I write and speak out to encourage others to keep going, to never give up.  I empathize with the struggles of others and let them know they are not alone.  My writing has been showcased worldwide, discussed on television, radio and internet media programs and shared by numerous government agencies, private practices, and advocacy groups along the way.  I have managed to reach and help more people than I ever imagined possible.  My children and my writing are a legacy I am proud to leave behind.

I have come a long way in life and I have overcome many obstacles along the way.  I am a fighter.  A survivor.

However, to the medical community, I am reduced to a simple list of stats.  Though in normal times, doctors often make an effort to acquaint themselves with their patients to better serve their needs, we are currently in the middle of a worldwide viral pandemic.  The number of infected is increasing daily by the thousands in my country.  And to make matters worse, I happen to live in New York – the current epicenter of the virus in the United States.  Doctors don’t have the time or the energy to get to know all of their patients well right now in an emergency setting.  They have to make split decisions based on medical history prior to infection.

And the simple fact is that I have cancer.  I have two tumors on my brain.  I’m honestly not sure it even matters that the tumors are benign or that right before the pandemic was declared a national emergency, my neurosurgeon informed us that my tumors have shown little to no noticeable growth in the last eighteen months’ of MRI scans.  The cancer diagnosis alone means that I am considered high risk and my treatment is considered a lesser priority than someone else without preexisting conditions.

The fact that I have continuously fought hard and survived many things over the course of my entire life is irrelevant.

The fact that I have dedicated years to helping and advocating for others is irrelevant.

The fact that I am otherwise relatively healthy is irrelevant.

Even the fact that I am a mother and a fiance is irrelevant because every single person that comes through the hospital doors is family to someone.  They are all a son or a daughter.  Many are parents, grandparents, spouses, friends.  We all have a story.

But my story can be reduced to one word, a word that makes my treatment less of a priority during a pandemic. Cancer.

As much as I want to say, want to believe, that the primary reason if not the only reason I want people to stay inside and be responsible is to protect others, I have to accept that I need protecting, too.  My health and well-being is important, as well.  I am part of that at risk, high risk group.  If I get sick, my treatment will possibly, if not likely, be deemed less of a priority.

I don’t want to see myself as someone needing protection because I don’t want to be seen as a victim. I don’t want anyone to feel sorry for me.  I am a fighter.  A survivor.  I have beaten the odds again and again.  I have a lot of living left to do and a lot of fight left in me.  I have children who I long to see grow into their own.  I have a wedding to plan.  I have more writing and advocacy to do.  And I have this cancer to beat.

My staying home unless absolutely necessary only goes so far to flatten the curve.  I am depending on others to be responsible, as well.  Every person out there interacting is a possible carrier and the more people congregating in a given area, the bigger and more likely the spread.  The more this virus spreads, the more likely I am to get it.  Hospitals in my state are already struggling to the point where do not resuscitate orders have been put in place if somebody dies.  If the hospitals become even more overwhelmed, they will be put in the same place Italy was at the apex of their crisis – with doctors having to choose who gets treatment and who dies based solely on their prior medical history.  And having tumors means if the hospitals are overwhelmed, I might be deemed not worth saving because they don’t have the manpower, equipment, time or energy to save everyone.

It’s easy to consider terms such as “acceptable losses” or to shrug off deaths of the elderly and sick as “the thinning of the herd” when you think in terms of abstract numbers instead of considering the actual people behind those numbers.  It is different when you consider the faces and stories of those people and the families they will be leaving behind.  Even one person needlessly contracting this virus and dying should be one person too many.  We all have families and stories.  We aren’t just faceless numbers.  And many of us still have a lot of life left to live and a greater purpose left to fulfill.

I didn’t come this far to only come this far.  I’m continuing to fight the good fight because I want to eventually leave this world a better, kinder place than it was when I entered it.

I don’t want to die.

I don’t want any of you to die either.

Republished on The Mighty on 5/4/20.

Republished on Yahoo News on 5/4/20.

 

Resolving Trauma Doesn’t Cure Mental Illness

When I explain that I am struggling with mental illness, I am often faced with people questioning why.  I usually start off with a fairly terse and technical response about it being a combination of genetics and life experiences but that answer rarely seems to appease anyone.  Though I am not quite sure why so many people feel I owe them an explanation about my medical condition, more often than not, people continue probing, wanting to know what could have possibly happened in my life that could cause a lifelong mental illness.

It is at this point that I usually explain that I grew up in a dysfunctional, often abusive, household.  I have endured physical, mental, emotional and sexual abuse multiple times each over the years.  I have been knocked down, stepped on, crushed to the core and had my very soul completely obliterated so many times I have lost count.

In response, I usually get the inevitable lecture about not holding onto the past, learning how to forgive, let go and move on.  Sometimes, they even throw in an additional reminder that I shouldn’t allow myself to be a victim for the rest of my life.

What I cannot seem to get through to anyone, though, is that my life experiences are only one small part of a bigger picture.  The traumas in my life did not cause my mental illness but rather they exacerbated it.  They also contributed unhealthy and dysfunctional behaviors and thought patterns.  Though they made a very difficult  situation much worse, resolving the traumas I have endured would not magically make my mental illness disappear.

The truth is that I have come a very long way to resolving and coming to terms with many of the traumas of my past.  I have gone through a lot of therapy over the years and have come to terms with many hard truths.  For instance, I have accepted that my mother shooting my father was in great part due to her often untreated, always undertreated mental illness.  I have accepted that one of the main reasons I had tolerated  repeated infidelity from my romantic partners in the past was due to the fact that I never was able to hold my own father accountable for his transgressions against my mother.  I have accepted that everything in life is not clear cut black or white, good or bad, and have done my best to put myself in the shoes of others and accept the past as something that cannot be changed, letting go of the torment within myself and even forgiving in some instances.

I have even taken things a step further, systematically pulling apart many of my thought processes trying to rout out any dysfunctional or unhealthy behaviors and patterns.  I have put myself under the self-awareness microscope again and again, examining why I react like I do and making a conscious effort to change anything that I believed to be self-destructive or unhealthy.

Most importantly, I have learned to forgive myself and to accept myself for who I am.  I have accepted that I had done nothing wrong to deserve any of the abuse that I was subjected to over the years.  I have even learned to like myself as a person and to identify different traits I possess as being assets.

I don’t consider myself a victim.  I consider myself a survivor.  Though the traumas I have been through have greatly contributed to the person I am and they deserve acknowledgement for that fact, I refuse to let them control my life or dictate the person I am going to be.  I am not looking for pity.  I just want acceptance and understanding.

Though I have fought extremely hard to work through many of the traumas I have endured in my life and consider myself very self-aware, I still struggle with mental illness every single day.  Why?  Because it is a medical condition.  Much like a person’s diabetes may be made worse by a large intake of sugary foods, removing those foods will not magically make their diabetes disappear any more than working through my traumas will make my mental illness disappear.

Part of my diagnosis is a genetic mutation.  This mutation greatly hinders my body’s ability to make a substance my brain needs to moderate my moods.  In essence, my brain has been starving for what it needs my entire life, getting at best 20% of a specific chemical it needs.  Though the traumas I have experienced contributed greatly to the severity of my condition and have negatively impacted my life, my mental illness would have existed even if none of them ever occurred.

Another portion of my mental illness is genetic in general.  Both my parents struggled with various mental illnesses over the years.  My mother suffered from bipolar disorder and my father struggled with depression throughout his life.  Though a parent having a mental illness does not guarantee the diagnosis in their children, studies have shown that the five major mental illnesses can be traced the the same inherited genetic variations.  So much like parents can pass along their eye or hair color, they can also pass along the predisposition for mental illness.

I struggle every single day with my mental illness.  Regardless of whether the rational part of my brain tells me that today should be a good day, another large part of my brain is constantly sending out negative emotions and responses, which in turn sometimes presents itself in physical ways.  I am in a constant battle with my own brain and body.  Though difficult times might contribute to the severity of my downward spiral on a given day, the absence of bad days does not negate my mental illness.  It is always there.

Yet that technical explanation is rarely enough to placate anyone looking for answers.  Many people seem to believe that mental illnesses like depression occur when something bad happens and can be just as easily solved by resolving the underlying issue.  They look for key life events to target, assuming the person struggling will magically be cured if they can just get past that traumatic event.

I can tell you that it rarely is that easy.  Yes, there are some cases of mental illness that are predominately situation-based where the person’s mental health greatly improves when the trauma is resolved, like increased depression caused by bullying, for example.  Likewise, there are milder cases of diabetes where the person’s sugar levels can be moderated predominately by life changes such as diet and exercise alone.  But that does not make that person any less of a diabetic.  For the majority of diabetics, though, addressing their lifestyle is not enough.  They need ongoing treatment and monitoring in order to stay healthy because their illness causes one of the organs in their body to not work properly.  The same can be said for mental illness.  The only difference is that it is our brain that is malfunctioning.

Providing a detailed list of our traumas does not give a run down of how to magically cure our mental illnesses.  Time and again, we throw out our trauma lists out of frustration because some people cannot seem to wrap their head around the fact that we have a medical condition that affects the way our brains work.  It is approached as “mind over matter”, that if we just try hard enough to work through things and learn to let go, we’ll be happy again.  Unfortunately, it does not work that way.

There is no shame in having a mental illness.  It is a medical condition that statistics show now affects one in five people in the world to varying degrees.  We need to stop the stigma surrounding mental illness and stop judging everyone who is struggling to live with one.  Nobody would ask a diabetic why they had their condition because it is accepted that sometimes bodies don’t work as they should and people have to seek medical treatment in order to live a healthier life.  People accept that giving up candy bars or soda won’t magically cure a diabetic.  Likewise, working through the traumas in my past will not magically make my mental illness disappear.  No one should have to justify why they have a mental illness nor should they be met with accusations that they are just not trying hard enough to get past their medical condition.  We don’t owe anyone an explanation nor do we deserve being blamed for our illness.

Republished on The Mighty on 5/3/18.

Republished on Yahoo Lifestyle on 5/3/18.

Republished on Yahoo News – India on 5/3/18.

Republished on Yahoo News – Singapore on 5/3/18.

The Frustration of Explaining Mental Illness to Those Who Have Never Experienced it Themselves

I would not wish mental illness on anyone else.  Having a mental illness is like waging a continuous war within yourself where half the time you are not even sure what is being fought over, only that the battle rages on.  There is never a true moment of peace.  You may have good days, yes, but even on those blessed days there is never peace because you can feel its presence, always looming, weighing down on your soul, preparing to strike again.  There might be small periods of respite here and there, the calm before the storm, but anyone fighting their own battle with mental illness knows it is only a matter of time before another downward spiral or another period of numbness, appears.  One of the worst things about having a mental illness is that we don’t even fully understand what is going on within our own minds and bodies, let alone have the words to adequately explain it to others.  Even more frustrating is when someone else puts us on the defensive because they do not fully understand what we are going through but assume they do because they have been exposed to it from a sideline view.

Someone who has never been in a car crash cannot reasonably say “I know what it is like because one of my family members has been in one” or “because I’ve taken care of someone who has had one”.

Someone who has never had cancer cannot reasonably say “I know what it is like because one of my family members has had cancer” or “because I’ve helped to take care of people who have had cancer”.

Likewise, someone who has never had a mental illness cannot truly understand what it is like to live with one, regardless of whether they worked with people who had one or had a family member diagnosed with one.

You can sympathize with someone else who is struggling but you cannot truly understand what it is like to live with mental illness merely by being exposed to it second-hand in others.  Witnessing others being traumatized is not the same as experiencing the trauma yourself.  It is not something you can experience vicariously and fully understand the suffering.  As much as we might try to explain what it is like in order to help others somewhat understand, there are no words we possess that would adequately explain all that we are going through.  And anything we say is usually just the tip of the iceberg, minimized for the benefit of others because we don’t want to overwhelm or scare anyone else with the horrors of our reality.   Mental illness is something that you truly have to experience firsthand to fully understand.

Nothing is more frustrating than having someone verbally attack the core of our illness as “making no sense”, expecting us to fully explain something that we ourselves have trouble understanding.  Or to be called out, as if we are somehow inherently wrong for even being mentally ill at all.

I have been diagnosed with generalized anxiety disorder, major depression and P.T.S.D.

Due to severe anxiety attacks during periods of high stress, one of the agencies I work with recently arranged a home visit as an alternative to my having an office visit.  I had someone interject that their mother is bipolar and has done the same thing, claiming that it is ridiculous that her mother can attend highly populated events such as street fairs but cannot go to a downtown office to complete some paperwork.  She then demanded to know whether I was equally unreasonable, attending random public events while claiming I was incapable of going out to an appointment.

I tried to explain that it isn’t how generalized anxiety works.  I am not anxious being around people.  I do not have social anxiety.  With generalized anxiety, I live in a constant state of heightened anxiety that is worsened by stressful situations.  On a scale of 1-10, most people start off an average day around a one or a two.  If there is nothing to worry about, there’s no reason for an average person to be anxious.  If someone’s rent is coming due and money is tight, their anxiety level might be raised to a two or three.  If, on top of that, they’re worried about being laid off, their anxiety might be raised to a three or four.  Not getting enough time with your kids, needing unplanned repairs on a home or vehicle that you cannot afford, unexpected illnesses and deaths all increase anxiety.  With each newly added stress, anxiety continues to compound and raise.

Now imagine starting every day at a 4 or a 5.  Even worse, most of the time you’re not even sure why exactly you’re anxious.  You just know that feeling is there.  You’re notably on edge, you’re distracted, you’re hyper-vigilant.  Your body is physically reacting to the stress.  You are visibly flustered, your chest is tightened, you find yourself shaking or bouncing your limbs or no reason, you have trouble focusing your thoughts and forming coherent words.  Each new added stress only raises everything higher.  It doesn’t take much until you find yourself at a 7 or 8, in a full blown anxiety attack.

Consider going to an office to do paperwork, starting at the 4 or 5 those with anxiety might begin each day with.  If a previous visit there did not go well, your mind relates the two and it adheres the past to the present situation.  If there were subsequent visits that did not go well, each of them is an added stress, as well.  Your mind is hyper-vigilant, constantly reviewing situations and drawing connections, trying to protect you from duplicating a previous bad experience.  After a few bad experiences somewhere or with someone, that compounded anxiety becomes too much to bear.   Your mind begins firing off danger warnings and your body reacts accordingly.  Your fight or flight response kicks in.  You want to run away, to scream, to avoid it at all costs.  You freeze like a deer caught in the headlights or you become agitated and aggressive because you feel an overwhelming need to protect and defend yourself.  It all occurs subconsciously in the brain.  Your anxiety rises on its own without any conscious decision on your part.  You are not intentionally overreacting or being melodramatic.  Your mind and body are just reacting to the situation at hand based on the data it has compiled.  It is the truth of living with anxiety.

Attending a populated event is another situation entirely.  In all honesty, each situation is different depending on our previous experiences with the location, the people involved and many other contributing factors.  We cannot even reasonably predict ahead of time whether a situation will feel safe or not because literally anything could trigger a raise in anxiety.  It never takes long before that heightened anxiety reaches dangerous levels and an anxiety attack ensues.  We have very limited control over situations.  Our mind and body are steering the car and we are just along for the ride.

My explanation fell on deaf ears.

Perhaps even worse than trying to help others understand anxiety is trying to explain depression.  Too many people who have either never experienced depression or who have only experienced a temporary or situational, mild bout, have a habit of aggressively attacking those suffering from more severe, debilitating depression for not being able to “bounce back” quickly enough to meet their standards.

We are accused of being lazy and having pity parties.  We are told that they “know what it’s like but..” you have to stop feeling sorry for yourself, you have to be more positive and at least try, you have to pull your shit together and do what has to be done.  We are accused of not trying hard enough, of not even trying at all.  We are asked why we are not even working part time and told of a myriad of other people who were able to magically pull themselves together, shamed into feeling like we are horrible people for being unable to function as well as they or someone else they know did.

I have tried explaining the realities of severe depression, only to have it fall on deaf ears, as well.

Those of us suffering from depression are not having pity parties.  Depression is far more than just being sad or feeling negative about our circumstances in life.  There are days when the world feels bleak and hopeless, where you are convinced you are completely alone and become trapped in an empty numbness that renders you virtually immobile.  It isn’t that you are not aware of everything that needs to be done or that you don’t want to do it – you are trapped within yourself, unable to pull yourself up to do even the simplest of tasks.  You might lay there for hours, beating yourself up as your inner dialogue drums into your consciousness everything you could be doing, should be doing, and how broken, worthless and useless you are for being incapable of doing anything at all.  There are days you spiral down into negativity, tearing yourself apart viciously for being garbage because some part of your brain believes that is what you deserve.  You tear yourself apart for being broken, damaged, and flawed worse than anyone else could ever do.  There are days when the tears keep flowing even though you cannot pinpoint exactly why, beyond “life itself” and days you’ll sit in a fog, doing nothing or randomly puttering, losing hours at a time.

Whether we’re trapped in numbness or spiraling down, our minds are constantly whirling, reminding us of all we should be doing and how much of a failure we are for not accomplishing everything we believe we should.  We desperately want to do more, to do better, to do anything at all.  We hate ourselves for not being able to do everything we believe we should be able to do.  We feel like a failure that has let everyone down.  But our minds have betrayed us.  We are in a constant battle within our own heads.  We have so many emotions, so much hurt, pain, anger, self-loathing, sadness and confusion swirling within our heads that it is hard to sort it all out and think straight.  Though we can pinpoint the cause of some of it, the majority is so broad and vague that we don’t even understand where it is coming from let alone know how to begin explaining or addressing it all.

Any job, even part-time, is difficult when we cannot plan from one hour to the next, let alone one day to the next, whether we will be spiraling down into that abyss or frozen in numbness.  Yes, e may have good, functional days, but they do not appear on any set schedule.  We have no idea how or when our depression will strike next or how long it will last. We are not being lazy or just not trying hard enough.  We just cannot reasonably commit ourselves to a schedule when we don’t know how well we’ll be able to function an hour from now, let alone a week from Tuesday from 8am to 4pm.

Perhaps the most asinine assertion I have ever heard from people who did not understand and had never experienced what I was struggling with was the claim I hve heard numerous times that “only soldiers suffer from P.T.S.D.”, as if I was somehow disparaging the armed forces with my diagnosis.  Post traumatic stress disorder is more broad-reaching than the military.  It is fairly common with those who have suffered from years of abuse, especially during their childhood as I have, or have experienced traumatic or violent events in their lives such as rape, as I have.  Flashbacks, nightmares and night terrors are not exclusive to those in a uniform.  Do not minimize my trauma because I fought a different kind of war on a different type of battlefield.

I truly appreciate when people acknowledge my diagnosis and attempt to empathize with all that I am struggling with because it really is a daily battle.  It is heart-wrenching and honestly makes me want to cry whenever someone has been through something so similar that they can truly relate to what I am going through because I wouldn’t wish this on anyone.  My heart goes out to everyone fighting a battle within themselves that they cannot seem to fully explain and constantly feel judged for having because I have been there and understand how exhausting it is to have to defend yourself for your diagnosis.  But please don’t ever use the second-hand experiences you’ve witnessed others having to minimize what I am going through.  Knowing someone who has mental illness or even working around people that have been diagnosed with a mental illness is not the same thing as living with one yourself.  Even individual diagnosis can differ greatly, as well, so you cannot measure two personal experiences by the same bar.  You cannot truly understand what a person is going through before walking a mile in their shoes so please stop judging me for my diagnosis when you have no idea of the battles I am fighting inside.  I truly appreciate compassion and empathy but please leave your judgment at the door.

#WhyIWrite

Admittedly, I’m not the most up-to-date person when it comes to my Twitter account.  I don’t usually follow all the trending hashtags.  Some days, I barely log in.  Today, however, one hashtag caught my eye. #WhyIWrite.

Without much thought, I began pumping out responses, one right after another.

It was such an easy, simple statement, yet I found myself with so much to say.  For someone who had gone so long without a voice, I think I had taken for granted how vocal I had become.

When I began writing, I was suicidal.  My life had fallen apart yet again and I was honestly on the verge of giving up.  In order to keep going, things HAD to change.  I had suffered in silence for far too long.  I knew the only way I could move forward, the only way I was going to survive, is if I began to talk.

The floodgates opened.  I spoke out about my past.  Abuse.  Assault.  Rape.  Mental Illness.  Infidelity.  Suicide.  All those topics you’re not supposed to bring up in polite conversation because it might make others uncomfortable.  All those topics that were so ingrained and interwoven into my life that I held inside for far too long.  All those topics that were systematically killing me.

A miraculous thing happened.  I began to heal, to work through trauma that had been plaguing me my entire life.  Even more amazingly, my focus began to shift.  Suddenly, surviving was no longer enough.  I wanted to live, to grow, to change and to flourish.

People began reaching out about my writing.  Thanking me for putting into words how they were thinking and feeling, for letting them know they were not alone.  Just as suddenly, my focus shifted again.  I realized my voice was a gift.  There were so many people in this world, struggling like I had been, without a voice.  I had before me the opportunity to make a difference, to speak out about mental illness, to be a voice for change.

#WhyIWrite seemed like such an easy premise, with multiple answers that flowed from me seamlessly.  I could go on for days with tweet after tweet about all the reasons I write.  All those answers can be summed up into one, though:

I write because writing saved my life and I hope to pay it forward, writing to save other lives, as well.

My voice may be starting out small, but my heart is big and my intentions heartfelt.  I believe that, by speaking out openly and honestly about mental illness, we can add to the collective and together be the voice of change.

 

…So Tired Of Being Judged For My Depression

I recently had someone ask me why I was depressed.  Mind you, this was not a doctor or trained mental health worker but rather a coordinated care provider of sorts.  I met with her as one of many hoops required when dealing with the bureaucratic red tape sometimes needed in order to get treatment and not fall through the cracks.

I was honestly surprised at the question but began to explain the technicalities of my depression from a scientific point of view.  Since my genetic mutation was discovered, I’ve done a good deal of research and have a much better understanding of why I suffer from depression from a physiological aspect.  She interrupted me a couple times, stating that wasn’t what she meant.  I began again multiple times trying to explain from a physiological standpoint why I was depressed, trying to explain everything from different angles.

After my third attempt to explain, she cut me off brusquely, telling me she didn’t want to hear any medical explanations.  She wanted to know “specifically what I had to be depressed about”.

I was beside myself with shock.  Here was this woman with no medical or psychological training, assigned to help me with other issues and paperwork, demanding to know why I felt somehow “entitled”, for lack of a better word, to “claim” I was so depressed that I was struggling to function.

I felt judged, like I was being put on trial, that I had to justify myself and my diagnosis to this woman who had no mental health training whatsoever because she was unable to wrap her head around the idea that anyone could be able to fade in and out of functionality, being able to “deal” with life one moment only to collapse the next.

I found myself bursting into tears in her office, spewing out a long list of what I could only imagine were reasons she might find “acceptable” for why I was suffering from depression, beyond the physiological reason that my brain is missing a key substance needed to moderate my moods due to a genetic mutation.  I threw out how, as a child, I had suffered from physical, mental, emotional and sexual abuse, how I was gang-raped at eleven, how my world was turned upside-down at sixteen when my mother shot my father and how I found myself on my own at seventeen.  I listed a myriad of abusive relationships and losses in my life.  Sobbing, I continued, highlighting one reason after another that I felt my depression was “justified”.

Even after my outpouring of pain and trauma, this woman was still unable to wrap her head around why I am struggling to function.  She continued to push and probe for answers.  She saw the large stack of paperwork in front of me that I had collected for my insurance coverage appeal and could not understand how I could put so much time and energy into that but still insist I was incapable of doing other things.  She insisted if I put even a fraction of the work I had put into my appeal into other aspects of my life, I should have no issues at all functioning.  She had seen me smile and laugh with my children at times and commented how I didn’t “seem all that depressed”.

I tried my best to explain.  For every one hour, one day I am able to function and be productive, I have four times as many hours and days where I just collapse, having trouble to even pull myself out of bed to eat or to pee.  I have no control over any of it.  It comes and goes at it pleases, regardless of what might be scheduled for that day.  And there are so many more bad days than good.  On some bad days, I am able to bolt on a smiling mask, pretend to be okay and manage to go through the motions.  Other days, I struggle to do anything at all.  There are days I just can’t stop crying, when my world feels like it is spiraling down beneath me and days I’m completely numb and cannot function at all.  I tried to explain how I do have good days, too, but they’re as unpredictable as the bad and that, especially when it comes to my children, I hold myself together as best as I am able and paint on smiles because I don’t want my illness affecting them any more than it has to do so.

Contrary to what some people might assume, I don’t happily skip around, enjoying a life of leisure.  I have not made up some imaginary illness to use as a scapegoat to escape any responsibilities.  I struggle every single day to simply function.  I am not complacent with my diagnosis, either.  I am in treatment, working very hard to try to heal, hoping that I can one day somehow function better than I am today.  I take my illness very seriously.  I wish others would, too, and be more respectful of my diagnosis instead of passing judgment.

I’m faced by that kind of judgment all the time by people that just do not understand depression.  They assume I just need to try harder to be more positive, that thinking happy thoughts will magically cure me, carrying me off like a dusting of pixie dust to Neverland.  People assume I’m either lazy or faking it, that nobody could possibly be “that sad” that I’m unable to function.

Even worse than those that make me feel like I have to justify my illness are the ones that either look at me with pity like I’m some poor, broken, fragile creature or those who back away from me like I’m dangerous or contagious.  Perhaps, worst of all are those that feel inclined to throw random motivational sayings my way, as if their reminder to stay positive is all I’ll need to chase the blues away forever.  Trust me, if all I needed to cure my depression was to smile more or think positive more often, I wouldn’t be struggling with mental illness.  It’s NOT that easy.

No matter what the judgment is, though, I always prepare myself for one because more times than not, there is one and it rarely is anything positive.  Seldom does anyone truly understand and empathize.  Again and again, I’m put on the spot, forced to justify what I’m feeling, usually while being reminded that someone has it worse or that they, themselves, have managed to get through rough times so I should be able to, too.  I’m told I should “suck it up” and “get over it”.

Though this may be the first time that specific person has inquired about my condition, no one ever takes into account how many others have intruded on my mental health and demanded answers even when they had no right to do so.  While some might mean well and ask out of concern, very few use tact or compassion in their inquiries.  I’m almost always put on the defensive, made to feel like I have to justify how I feel.

Even after I do my best to explain everything, though I don’t quite understand it all myself, I am met with doubt, suspicion and accusations.  I am treated like I’m lying or lazy, exaggerating or broken beyond repair.  I’m looked at as a monster or unbalanced and crazy.

I beat myself up already more than enough for not being able to do as much as I feel I should be able to do.  I already feel every single day that I am failing everyone around me, failing my children and myself because I honestly want to do more, feel I should be able to do more and cannot understand why I cannot seem to be able to do it.  I hate that I crumble and fall apart so easily and am not able to do all the things I feel I should be able to do.  I have judged myself far more harshly than I should ever have done and have been trying to be kinder and gentler with myself.  I don’t need anyone else’s judgments on top of my own.

Everyone says they want to understand and demands answers, yet very few are supportive when I try to give any.  It is exhausting to have to explain everything again and again, mentally preparing myself each time for the responses and judgments to come.  I often isolate because it means less people to put me on the spot, less people I have to defend my diagnosis to in the long run.  I paint on a smile and reassure people that I’m fine, pretending everything is okay even as I’m sobbing inside because it is easier to lie than it is to have to defend myself for having an illness that I have no control over.

In the last year, I have begun talking more and more about my own struggles with mental illness not because it is in any way easier or takes a weight off my chest, but because I am completely exhausted from having to justify and defend myself.  I am tired of the stigma that is attached to my diagnosis.  Nobody would suggest someone with cancer should just try harder to be well or accuse someone with a broken leg of being lazy because they are unable to walk.  I am mentally ill.  Doctors have diagnosed my condition.  I should NEVER have to justify my diagnosis or defend myself over how my symptoms present themselves. I am tired of being made to feel like I should be ashamed of my diagnosis or that I have done something wrong in some way because I am ill.

I am speaking out because things need to change.  I am tired of being judged.

Republished on The Mighty on 03/09/17.

Stranger at my Window. PTSD at my Door

I struggle with PTSD.   The sexual abuse I endured has changed me undeniably.  Though the intensity of everything ebbs and flows, the undercurrent of my past trauma is ever-present, threatening to pull me under every minute of every day.  I have this constant feeling that I am not safe, never safe.  I hate the dark.  I must sleep with the light on so I can see if someone is ever there.  I cannot close the curtain completely when I shower because someone might be able to catch me off-guard.   I like to know that doors and windows are always locked because there is safety in security.  I am a self-induced insomniac.  I am prone to nightmares so I have trained myself to stay up over the years until I am so exhausted that I know I’ll sleep heavily, without dreams, out of exhaustion.

There are certain sights, smells and sounds that I avoid like the plague because they remind me of past assaults.  In the least, being around them makes me uneasy, uncomfortable and on edge.  At worst, they trigger my memories of those events and I get pulled, whether partially or fully, back to that time.  The feelings themselves begin to emerge. NOT SAFE.  NEED TO GO. NEED TO RUN. I feel like I’m caught back in a loop of a Groundhog’s Day of nightmarish proportion.

I feel I have no control over my thoughts, my feelings, my body, so I try to control everything else.  I micromanage.  I need to have important things in my life outlined and know where everything stands in every moment.  I never want to be caught unaware again.  I do not want to be vulnerable in any way ever again.

My flight response is very high.  Growing up, there was a lot of abuse in my home.  If you wanted to be heard, you yelled louder than the next person.  If you wanted to shut someone up, you would say the meanest, cruelest thing you could muster.  I hated that side of everyone and loathed it more in myself.  I swore I would never live that way again and pushed that side of me down.  During times of stress when I am feeling irrationally vulnerable, that side rears its ugly head.  Part of me wants to lash out viciously, to yell, rant and unleash outwardly all the pain I feel inside.  I refuse to let this monster out to create damage that can never be undone, so instead I run.  More appropriately, I walk.  I walk and walk, miles at a clip, until the feelings subside and reality returns.  I’ve been running, and walking, away from my past my entire life.  That is my life with PTSD in a nutshell.

I have been staying with friends recently.  Thankfully, they hadn’t questioned why my bedroom light is always on or why I keep such odd sleeping hours.  Or why most nights I am awake until two or three in the morning.  Or why I occasionally need mini naps because I’m always exhausted.  They know about my history of sexual abuse and my diagnosis so they have been wonderfully patient with my many quirks and thankfully have not inquired too deeply about them.  I am admittedly very self-conscious about my mental health and have lived persistently in fear of the stigma of the mentally ill being damaged and crazy.  Nothing makes me feel more like I fall into that stigma mold than my irrational feelings and behaviors caused by my PTSD.  I am grateful beyond belief that they accept my peculiar behaviors at face-value and have never drawn attention to them or made me feel unhinged or broken because they are there.

A couple nights ago, noises from outside woke me from a dead sleep.  I heard some banging and clanging at my bedroom window.  We are out in the middle of nowhere, on the outskirts of where the country meets the woods.  All around us are farms and forests.  Being used to the city myself, initially I tried to chalk the sounds up to nature and wildlife, to convince myself I was just being silly.  The noises continued.  As they persisted, I became more on edge.  I crept to the window to peek through the blinds just in time to see a dark figure bolt away.

Trying to harness my paranoia and rein it back in, I hopped online.  My friend’s cousin had messaged a short while earlier, asking if we were still awake over here.  I lightheartedly asked if he had been outside my window because I knew he lived a short distance away.  I didn’t want him to know how anxious I truly felt.  When he laughed and said he hadn’t been, that he was still at home, I entered full-blown panic mode.  Though it was after 1 am, I went out to speak to my friend.

My friend and his dog took a lap around the house, a ranch-style home with only one story.  The outer storm windows of both my bedroom and his son’s bedroom had been forced up a couple inches into the first locked position, as if someone had tried to get in.  The dog reacted to the area around both bedroom windows, sniffing and looking around alertly.  The next morning, my friend heard from a neighbor that there are “gypsies in the area”.  I am not quite sure what constitutes gypsies in this day and age because I envision wagons, brightly colored clothing and a strange mysticism of stories from years ago when I hear the term, but the fact remains that there are strangers in the area that the locals neither know nor trust.

There went any possibility that I had imagined anything.  Admittedly, part of me hoped I had just been paranoid because of being in unfamiliar surroundings.  I hoped that maybe I was hearing things, seeing things, and making mountains out of molehills.  Confirmation has sent me into a hyper-alert state.  In my head, I have taken stock of every weapon I know is in the house so I can protect myself if the need arises.  I am sleeping in small bursts of an hour or two, bolting awake at the slightest sound.  I am checking to make sure windows are locked each time I pass them and trying my best not to appear an unhinged mess.  Inside, my anxiety has begun pulsating steadily in a loop. NOT SAFE. NOT SAFE. NOT SAFE.  I find myself hiding in my bedroom more and more because I am agitated and scared and don’t want to subject anyone else to the mess I am until I can find a way to rein it back in and get it back under control.

It may have been area kids pulling a prank, trying to be funny.  It may have been my friend’s cousin, after all, his denial being prompted by feeling foolish about trying to get our attention in an absurd way instead of coming to the door.  Or perhaps it was the strangers in the area the neighbors had mentioned and referred to as gypsies, checking houses for whatever reason.  It was most likely a one time occurrence, unlikely to happen again.  Regardless of who it was, though, or what their intentions may have been, having someone at my window has brought my PTSD knocking at my door.

Republished on The Mighty on 10/28/16.

A Long Overdue Letter to Myself

I have been struggling with mental illness my entire life.  Just recently, I began writing and speaking out about my struggles with depression, anxiety and ptsd, as well, shouting from the mountaintops to anyone who could hear, hoping not only to help others understand but to battle the stigma attached to mental illness, as well.  When I was approached by another author to write a segment for his upcoming book about depression and recovery, naturally, I jumped at the chance.

You see – when my world fell apart, I had two choices.  It was either sink or swim, live or die.  Though a large part of me wanted more than anything to surrender and have the pain stop, there was this little kernel inside of me screaming to never give up, never give in.  I mustered every ounce of strength I possessed and began to fight like I’ve never fought before.  I began to write about all I’ve been through.  I wrote like my life depended on it because in so many ways it did.  By pulling my demons out into the light and exposing them, I felt I was finally able to begin to heal.  I had found my voice.  Writing had become my passion, my life blood.

I published a book about my life.  I began blogging, as well, hoping to reach out to those struggling with depression themselves so they would know they were not alone.  I found myself writing to help others understand mental illness and to speak for those without a voice.  With each new piece I published, I hoped to start a dialogue and reduce the stigma.  While I found some healing in trying to help others through my writing, the focus had shifted off of myself.  I was no longer writing for myself; I was writing for a cause.

When a fellow author, James Withey, asked me to contribute something to his The Recovery Letters project*, a book set to be published next year, it was enormously huge for me.  He wanted me to write a letter to someone out there struggling and suffering, to let them know I understand; To give them encouragement and inspiration to hold on, be brave, be strong and continue to fight on.  The idea of such a letter struck a chord with me.  Everyone deserves something like that.  Unfortunately, though, what you deserve and what you get are sometimes entirely different things.  I could wait a lifetime and never receive such a letter from anyone else.  So I decided to write one to myself.

Today, I go full circle and return to where I first began, first found my voice.  I shift my focus inward and once again make myself a priority.  It is so much easier to reach out to others with encouragement than to face my own nightmares.  The truth, however, is that I must face my own demons if I have any hope of slaying them.  Once again, it is sink or swim time, live or die.  While it terrifies me to look inward, I am not ready to surrender quite yet.  I have too much living still to do.  I deserve to matter.  I deserve encouragement.  I deserve hope.  And so I write to myself:

Dear Beth,

I know you are scared.  You’ve been through so much in life and are so tired of fighting, of struggling and of hurting, but you have to be brave and hold on.  You’re so much stronger than you know.  You’ve come so far in life.  So many people have tried to break you, yet here you still are, still surviving, still holding on.

All your life, you’ve had people telling you that you were unwanted, unlovable, broken, damaged and a waste of space.  You’ve let other people define you and determine your worth.  You’ve bought into every cruel word they’ve spoken, believed every lie.  You need to stop listening to others and begin listening to yourself.  Listen with your heart.

All your life, you’ve faced abuse from others.  People have laid their hands on you in anger, treating you like a punching bag instead of a person.  Men and boys have touched you in ways a little girl should never be touched.  Their abuses have stolen your identity, broken your will until you felt more like an object for others to use and abuse than as a person.  You never deserved that.

Everyone you’ve allowed yourself to love has torn your heart out and stomped on it.  You’ve begun to believe that love and pain go hand in hand and that sooner or later, everyone leaves.  They’ve made you feel like you’re not enough so often that you’ve begun to believe it.  You internalize their actions, always blaming yourself for never measuring up.  Even when they’ve cheated, you believe somehow you’re at fault.  You’re not.  You never were.

You were taught young to put up walls.  Never let anyone see what hurts you because it makes it that much easier for them to hurt you next time.  Never let anyone in.  Never be vulnerable.  You are so terrified of letting yourself be hurt that you walk around numb, afraid to feel anything at all.

You’re so used to hurting inside that you’re not sure how to feel anything else.  Though you paint on a smile so others don’t worry, you’re always crying inside.  You’re not even sure what happiness is most days.  You’re afraid of letting it in because it’s always fleeting.  Happiness never seems to last.  You greet it with wary suspicion because you’re always waiting for the other shoe to drop.

Though others have abused you and broken your spirit more times than you can count, you’ve picked up where they left off.  You need to own that sweetie.  You’re harder on yourself than anyone else has ever been.  You’ve let them all convince you that you’re worthless so you treat yourself as such.  You beat yourself up for everything, regardless of whether or not it was even your fault.  While you’re able to accept the flaws and mistakes of others, you tear yourself down for every misstep and every defect.  You never give yourself any breaks.  You need to stop that.  You’re slowly killing bits of yourself every bit as much as all their abuses have.  Please be kind to yourself.

In so many ways, you’ve surrendered to your depression.  You’ve accepted that this is just how your life shall always be.  You’ve begun thinking of it as something familiar, akin to a friend.  Your depression is not your friend sweetie.  It is not there to comfort you or help you.  Your depression speaks in lies.  It wants to beat you, to break you, to tear you into little pieces, shattering you so badly you can never recover.  You need to stop being polite and welcoming it in.  You need to stop accepting it as your reality, your lot in life and fight it.  It only has power and control over you if you let it.

I know you’re terrified of life, of letting anyone else in and of being hurt again.  You’re scared to death that you’re not strong enough.  So many times you’ve cried out “no more! no mas!”, positive that you could not survive anymore heartache, sure than any more abuse would kill you.  It’s okay to be scared.  It’s okay to be vulnerable.  But never let your fear keep you from fighting.

Whenever you’re not feeling strong enough, you need to remind yourself of everything you’ve survived in life.  Keep reminding yourself of your strength.  You are a hurricane, a tornado, a force to be reckoned with.  You’ve been battling monsters and demons for over forty years now and you’re still going strong.  There is not anything you cannot overcome.

I know you’re scared, too, of putting your heart out there again and that is okay.  Love will come again in time.  Don’t give up on it.  Don’t let the actions of a few bad apples make you jaded or close off your heart.  Love is a beautiful thing and you deserve that in your life.  You deserve to be loved and cherished with as much fervor as you have always given everyone else.  Just make sure to learn from your mistakes next time.  Never again settle.

You need to let go of all those negative labels others have used to define you because none of them are even remotely true. You are fierce.  You are beautiful.  You are smart.  You are strong.  You are a warrior.  You are a survivor.  You are an incredible person Beth.  You have such a warm, loving heart – no matter how much other people have broken it, you always manage to reach out to help others.  You have so much to give to the world, Beth, and to yourself.  You are a blessing.

Stay strong.  Always keep fighting.  Never give up.  The world needs you in it.  Your children need you.  You need yourself.

With all the love you deserve in this world,

Beth

* The Recovery Letters is a labor of love created by James Withey.  Amongst other places, The Recovery Letters has been featured on the BBC World Service, BBC Radio 4’s ‘All in the mind’, the BBC News app, ITV’s ‘This Morning’ and Vanity Fair magazine.  He has a book contract with Jessica Kingsley Publishers to publish a book of current letters from the site alongside new letters. It will be published in the US and the UK in August 2017.

 

Republished on Bipolar Life on 9/26/16.

Republished on The Mighty on 10/13/16.

Republished via The Mighty on Help Minds Heal on 10/14/16.

Republished on SelfGrowth on 10/17/16.

How Sexual Abuse Changed Me

I was eleven when I lost my virginity.  It happened under an old pine tree in an overgrown backyard of an old lady’s house a block away from my childhood home.  The boys were older.  They were rough and cruel.  They laughed the whole time like it was some hysterical joke I didn’t understand.  Perhaps they thought I was the punchline.  It killed my innocence and woke a nightmare that has been chasing me ever since.

When I was thirteen, it began happening regularly.  This time it was my brother’s friends.  The first time my brother told me that one of his friends wanted to be with me, I said no.  I didn’t want to do it.  My brother, almost 5 years older than me and over twice my weight, changed my mind with his fists.  It was easier to let it happen whenever they wanted than to get beaten.  It was always easier to close my eyes and let it happen than to say no, get hit and have it happen anyway.

Sex was something I was forced to have when I was a child not even old enough to consent.  Sex was something others pushed me into because I was wearing something revealing or acted flirtatiously and someone else felt owed.  Sex was something I let happen because I didn’t know how to say no and was afraid to say no.  Sex had to do with being an object for others to use.

I had no say over my own body.  I had no say over sex.  Sex was a physical act that boys and men would do that had very little to do with me as a person.  The physical act of sex took away my voice and my identity.  I could have been any person.  Any hole.  Sex, to me, was something ugly and rough.  Sex was scary.  Sex hurt.  Just the thought of sex made me want to cry.

I often wonder if predators can single out victims the way a wolf can spot that lone, weak sheep at the edge of the flock.  The easy target.  That one who has been hurt and abused so often that they have very little fight left in them.  As much as I’ve wished I could walk through life invisible, I’ve often felt like I’ve had a glaringly bright neon sign floating above my head that reads, “Easy Target Here”.  Even in relationships, I’ve been pressured into things I did not want to do, things I begged and pleaded not to do.  My ex used to push to do things or include others under the guise of stepping out of comfort zones or sexual exploration.  Looking back, he felt like a wolf in sheep’s clothing, just another predator looking to have his way regardless of what I wanted, under the guise of love.

The first couple times I was raped, I tried reaching out to my mother for help.  When I was eleven and came home crying, covered in dirt and pine needles, their semen and my blood, my mother asked what I had expected based on the clothes I was wearing.  When I was thirteen and she was bringing me to the hospital for the doctors to kill the baby one of my brother’s friends had left to grow inside me, I was told not to tell my father.  Told that “daddies did not love little whores”.  I was never asked whether I had consented to have sex because I was too young to even consent.  I was never even asked if I wanted an abortion.  I had no voice.  I was irrelevant.  I learned not to speak up because if my own mother could not be understanding or compassionate, what could I expect from the rest of the world?

Even worse than having no one to turn to is not being able to count on myself.  I have lived a coward’s life.  I have been afraid to say no because my voice meant nothing when I did speak up.  I have been afraid to fight back because it was easier to let it happen than to take a beating.  I have not spoken out about all I’ve been through because I feel dirty, damaged, ashamed, irrelevant and inconsequential.   I feel like I’ve failed myself for not yelling no, not fighting harder, not crying out that things like this go on.  I feel like a failure.  I feel tainted and used.  All the damage others have done to me cannot compare to how much I beat myself up because I let it happen again and again.

When I talk about previous partners, it is a very gray area for me.  Where most people can blurt out a specific number, I’m never sure how to respond.  I refuse to count those that touched me when I was a child.  Likewise, I cannot stomach to acknowledge those that forced themselves upon me as an adult.  I’m forever weighing whether or not to count those that I had never wanted to be with but who pushed anyway.  If I did not say no because I was too afraid to say anything, what do I consider them?  I am very hesitant to ever use the word rape unless I have been verbally or physically adamant in my objections – but what does a woman call it when she has become too afraid and defeated to say no?  Instead, I usually find myself only counting those who I have willingly, completely of my own choice and actions, chosen to be intimate with on my own terms.  It is a very short list.

In my head, in order to try to have any type of semi-normal physical relationship with anyone, I had to separate sex from intimacy.  For me, intimacy was about sharing love and tenderness.  Intimacy didn’t have to involve any particular physical act.  Intimacy revolved around feelings.  It is always those feelings that I have to focus on.  Emotions not physical acts.  I have a lot of trouble dating.  Men seem to want to jump right away into a physical relationship.  I do not move fast enough so most lose interest quickly and move on.  For me, intimacy must involve feelings and trust.  Feelings build over time.  Trust must be earned.  I’m not comfortable rushing into intimacy.

As much as I would love to have a “healthy” physical relationship one day, I’m honestly not sure it is possible.  Whenever people show interest in me, I’m afraid I’ll be put in that position again where I won’t be able to say no, or worse, that it won’t matter if I say anything at all.  Even compliments are met with mistrust because I am always looking for ulterior motives.   I find myself recoiling from the touch of others unless the feelings are there and I have expressly initiated intimacy myself.  I have to mentally prepare myself, convincing myself that this specific time is different, that there are feelings and that I do matter to them, just to follow through.  If there are any doubts about sincerity, I pull away and hide.  It should not be this hard.  Yet, for me, it always is.  I fear it always will be.

I am tired of being a victim.  I am tired of always being afraid.  I am trying to speak up, to find ways to work through my past and to heal.  Though the physical act of sex only lasts a short while, the trauma of sexual abuse lasts a lifetime.