Coronavirus Has Become The Great Equalizer For The Mentally Ill

For years now, I have attempted to combat the stigma associated with mental illness.  Again and again, I have given real world examples, approached the subject from differing angles, even used charts and graphs, hoping to help those who have never experienced it themselves better understand.  Yet, sadly I still often feel like I fall short.  While those who are living with mental illness have contacted me numerous times to thank me for putting their experiences into words, there are still those who could not wrap their minds around what it was like to live with our diagnosis.

That is, they couldn’t fully understand until this pandemic hit.

Day after day, for months now, I continue to see postings, comments and tweets that could have been written by any one of the millions of people who struggle every day with various mental illnesses.

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People talk about being worried all the time, sometimes not even knowing what it is that they are worried about, only that the ever-present feeling of dread is looming there, hanging over them.

People talk about being afraid of their world falling apart, the economy crumbling, their job not being there after all of this is over.  They worry about not being smart enough to home school their kids, and of the dangers of sending them back to school in the height of the pandemic. They worry about the house not being clean enough if they have to do a video conference with their co-workers or whether they are even capable to adequately work from home for any length of time. They worry about bills accumulating faster than money comes in and the continuous threat of losing their homes due to evictions and foreclosures.

Even seemingly little things like running to the store for food or toilet paper feel huge.  The world outside doesn’t feel safe.  What if the store is out of whatever we need when they get there?  What if they bump into someone sick? What if they bring the virus home?  The sound of someone nearby coughing makes them jump and want to run back home to safety.  Many even put off going out for days until they absolutely have to, the dreaded eventual trip weighing on them.

People talk about being worried incessantly and excessively about their loved ones and friends, of imagining worst case scenarios of their illnesses and deaths, even though they know they are currently safe and healthy.

Though the common sense part of their brain keeps firing off, trying to remind them that everything is currently okay, and that things will likely eventually be okay again, they cannot help but feel like everything they are worried about is not only possible but probable.  Everything seems to be hanging heavily and even little things feel too big to handle some days.

They feel restless. Their mind runs nonstop.  Even reading the news feels overwhelming, yet they struggle to look away because they feel an urgency to stay informed.  They feel like they have no control over their lives, as if everything is spiraling down into chaos, getting crazier by the day, and there’s absolutely nothing they can do to stop it.

They talk about the confusion of differing information out there, of never knowing what to believe, who to trust, and being fearful of choosing incorrectly and it leading to disaster.

People talk about being continuously exhausted as the pandemic drags on and on, about wishing things would just be over but fearing there is no end in sight. They’re tired of thinking about the coronavirus, tired of worrying about it, want it to just go away. Yet it continues to loom, to linger, to threaten their peace of mind and their very sanity.

All of that is anxiety.

THAT is what people who live with an anxiety disorder go through every single day over a multitude of things in our lives.

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People talk about that feeling of hopelessness.

They feel trapped at home without any real purpose. They are constantly dragging throughout the day.  They can’t stay focused. They are eating and sleeping all the time or not at all.  Some complain about not even enjoying their favorite foods anymore or their favorite shows no longer bringing them any joy.

Some feel all alone.  Many of those feel isolated even with others around, afraid to talk about what they are feeling and going through because they don’t want to seem crazy.  They pull inwards, trying to cope and to put on a brave face, even though they feel like they are falling to pieces inside.

Homeschooling has become overwhelming – they don’t remember school being that hard and feel inadequate because they are struggling to help their kids with basic subjects.  They feel they are letting everyone down by not being enough. Yet the thought of sending kids back to school feels equally as disastrous. It is as if no matter what choice they make, it’ll be wrong, that every option is equally bad and hopeless.

Life itself feels exhausting to them.  There’s times they just feel numb to it all.  Other times, they just want to cry.  Often, they just resort to sleeping, or mindlessly scrolling through social media or watching random shows, though they can barely recall afterwards what it was that they saw.  They feel they are just going through the motions and desperately wish life would just get back to normal – though they know there is nothing they could do to change anything.

Some people are attempting to regain control of their lives, to go out and do something, anything, to reclaim the life they once knew. Yet, while out and about, they are distracted by all that could go wrong, by wanting to return to the safety of their homes. Though part of them desperately wants to enjoy their time out, their thoughts and feelings hang heavy on them, throwing a dark cloud over it all. They feel guilty for everything – for even trying to go out, for trying to have fun, for being too lax or not taking enough precautions. They apologize to others for sucking all the fun out of what could have potentially been a nice day, feeling they somehow seem to be ruining everything they touch.

They see other people being productive, using their downtime wisely to accomplish so many things. They wish they could get things done, as well, but seem to have no desire, no drive to do anything. They find themselves procrastinating and then beating themselves up for their inactivity, which in turn makes themselves procrastinate more, caught in an endless loop where nothing gets done and then they beat themselves up for that lack of productivity.

All of that is depression.

That is what people struggling with a depression diagnosis go through on a regular basis.

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I have seen people talk about wanting to be productive during this downtime, taking on a multitude of projects, more than any one person could legitimately handle, convinced they have the time and energy to do it all, only to crash into an overwhelmed, discouraged heap days later with everything half completed.  They go through cycles of manic, larger than life aspirations and heavy, depressing reality.

People talk about feeling irrationally angry, of feeling fed up about everything and nothing in particular at the same time. They find themselves continuously annoyed with everyone in their life and even the pandemic as a whole.

They describe many of the feelings common with depression, but with an entirely different mess added to the mix. They talk about having feelings that boomerang and yo-yo from one end to another, or sometimes both extremes at once. They talk about feeling so much, in so many directions, that they cannot even put it all into words.

Those highs, lows and extremes are all aspects of bipolar disorder.

People struggling with bipolar disorder often find themselves experiencing a wide variety of emotions and extremes with no rhyme, reason, pattern or predictable duration.

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The list goes on and on of ways this pandemic has helped mirror mental illness in the everyday lives of people who have never experienced it before and struggled to understand it. In the last few months, I have seen these sentiments appear and reappear throughout the country as pockets of positive cases sprung up and the epicenters continued to shift. No matter where the worst of the pandemic currently resides in the country, though, the narrative has remained largely the same.

Whenever I see people talking about their struggles during this pandemic, I want to call out “YES! Yes to this tenfold! That is exactly what it is like!” in hopes of turning it into a teachable moment.

At the same time, I find myself saddened, because I wouldn’t wish any of these experiences on anyone else, even if they are temporary and likely to end when this crisis is over.  I know what it is like to live with anxiety and depression every single day for years on end. I grew up seeing my mother struggle with bipolar disorder and now watch my fiance battle it on a daily basis. I am intimately familiar with many of the struggles of living with a mental illness. It breaks my heart to see so many others going through these struggles because I know firsthand how hard it can be.

As strange as it sounds, though, beneath it all, this pandemic has given me a strange sense of unnerving calm. For the first time in my life, I don’t feel entirely odd, different, unbalanced or crazy.  For the first time, I don’t feel singled out, the odd woman out in a world where everyone else seems to be breezing through life, coping much better than I could ever dream. For the first time, everyone else can finally understand all the feelings I go through every single day.  At least in that one aspect, the pandemic has become the great equalizer for those of us with mental illness.

I can only hope that their memories do not fade, though, once all of this is over.  Perhaps now that more people understand and have experienced many of the feelings commonly associated with mental illness even on a temporary basis, they will be more empathetic to the struggles many of us face every single day. Though even if those memories do eventually fade away, I hope everyone currently struggling to cope with the weight of the pandemic knows, as those of us in the mental health community often reassure each other, that none of you are alone. Though there are no easy answers or solutions to much of what you are feeling, we understand and we are all here, even if physically apart, to offer our support. Please never be afraid to seek help if you find you cannot cope on your own. Stay strong.

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.

 

I Have Depression.. But I am Happy..

I have struggled with depression my entire life, in part due to a genetic mutation passed down to me from my parents that affects the way my body metabolizes specific chemicals my brain needs to moderate my moods.  I regularly go through horrendous downward spirals where I feel completely broken and worthless, where life feels utterly hopeless.  I struggle with long periods of numbness where I have difficulty functioning or even finding the motivation to get out of bed.  On bad days, I will cry until my face is sore and my voice is hoarse, and it is unlikely I will be able to accomplish much more than basic self-care.  I am battling an illness that warps my very perceptions of life and continuously exhausts and pains me both physically and mentally.

But I am happy.

I have an amazing fiance who is very supportive of me and my diagnosis.  I have healthy, kind, smart and all-around wonderful children who have grown into incredible adults.  My fiance’s children are both amazing, as well. Together we have all formed a beautiful, blended family that I love with all my heart and am proud to call my own.  I have a team of doctors who actually listen to me and a treatment plan that is slowly but surely helping improve my quality of life.  And I have a blossoming writing career that has given me a true sense of purpose and an ability to help others in need.  I have many wonderful blessings in my life to be grateful for, many reasons to be happy.

Yet I have been diagnosed with depression.

That is because a mental illness like depression has nothing to do with happiness.  Depression is not caused by being in the wrong frame of mind or just not trying hard enough to be happy.  Having a depression diagnosis has nothing to do with feeling sad, a little blue or under the weather.  People with depression aren’t being Negative Nancys or Debbie Downers who just need to learn to lighten up and look on the bright side.  My diagnosis wouldn’t just disappear if I just tried to smile a little harder or maintained a more positive outlook on life.  My depression has nothing to do with whether or not I am happy.

I have trained myself to find reasons to smile everyday.  I am usually the first to look for something positive in even the roughest of situations.  No matter how hard my own day might feel, I always try to show compassion and kindness to others.  If nothing else, I am grateful each day I wake up and thankful of all the loving and supportive people in my life and share that sentiment regularly.  I am hopeful for the possibilities the future may have in store for me, as well.  Some of my friends lovingly joke that I am the happiest, most positive little depressed person they know.

Yet I continue to struggle with my depression diagnosis.

My brain does not care whether or not I am happy or grateful, whether I am hopeful, compassionate or kind.  My mental illness is caused by my brain not working properly, much like a diabetic’s pancreas malfunctioning causes their condition.  I have no more control over having a mental illness than someone else having diabetes, heart disease or another medical condition they may have been passed genetically.  Yes, events in my life may have further exasperated my mental illness, much like having excessive sugar might worsen a person’s diabetes or having foods high in cholesterol might affect the severity of heart disease, but my condition preceded any of the traumas and abuses I have endured over the years.  I have even sought treatment to help resolve those issues to the best of my ability, yet my depression has remained.

Because depression is an illness, a medical diagnosis with both mental and physical causations.

It is not all in my head.

It is not a state of mind or an emotion.

Depression isn’t about being sad.

The cure for depression is not happiness.

Like any other illness, depression needs ongoing medical treatment.  Doctors need to not only diagnose the condition, but also to isolate and treat both the mental and physical reasons for the illness, as well. Though doctors often utilize psychological treatments like therapy, meditation and mindfulness, they usually also include psychiatric methods and medications to help treat the physical causation.  That is because doctors recognize mental illnesses such as depression as a verifiable disability that deserves a comprehensive, multi-pronged treatment.

In cases like mine where my depression has a genetic causation, my diagnosis is permanent.  I was born with it much like some children are born diabetic.  You would not blame a child for being born with a pancreas that was incapable of functioning properly so please don’t blame me for the fact that I was born with organs that malfunctioned, as well.  The only difference in my case are the organs affected.  No matter how happy I am or how positive my outlook is on life, my liver will never be able to metabolize the substances my brain needs in order to function properly.  I will have this medical diagnosis and need ongoing treatment until the day I die.

If I confide in you that I am struggling with depression, please don’t try to encourage me to try to be happier and more positive, or point out all the blessings I have in my life.  I am happy and grateful already.  You do not need to remind me to be hopeful for the future because I already am.  Please don’t blame me for my diagnosis either, insinuating that I wouldn’t be ill if I just tried a little harder.  I did not ask for this diagnosis, nor did I cause it.  What I need from you is the same compassion, understanding and support you would give anyone else with any other medical diagnosis.

Because, though I am already happy, knowing you were doing your best to be supportive and treat me with the same respect you would someone struggling with other illnesses would make me even happier.

Republished on the Mighty on 4/4/19.

Explaining My Aphantasia

I frequently write about mental health topics, particularly ones that directly affect me because I firmly believe it is easier to explain conditions when you write what you have experienced firsthand.  Though more often than not, I write primarily about mental illness, there are mental health-related conditions that exist outside what would be considered an illness or disability.  One such mental condition, one that I live with personally, is aphantasia.

Growing up, I honestly did not realize that my mind worked any differently from anyone else’s.  When I’d sit in a classroom with my fellow classmates and the teacher would tell us to imagine something in particular, my mind would race through a database of sorts, pulling out words to describe whatever we were instructed to visualize.  I did not know back then that my mind was different.  I had assumed that was how everyone’s brains worked because nobody had ever told me any differently.

I was in my early twenties when I first discovered just how differently my mind worked.  I was a young mother back then, watching random children’s programming with my toddler.  On one random educational children’s show, I honestly do not remember which, one of the characters suggested all the kids close their eyes and imagine something or another, walking children through some exercise in imagination.  They ended by asking the children watching if they could see it and what colors had they chosen for their creations.

I remember sitting there completely dumbfounded, one of those “wait.. what?!” moments.  The whole concept that anyone could create images within their head, actually see pictures, blew my mind.

When I close my eyes, all I see is blackness.

When I try to pull up a recollection of something, all I ever get is a long series of words, of descriptors.  The best way I can describe it is that my mind is like a vast room of file cabinets, all containing various data.  Whenever I start thinking of something, my mind races, looking for facts to connect to the recollection in question.

If someone tells me to close my eyes and imagine an apple, I never am able to see an apple in my mind.  Instead, an inner dialogue starts, spewing out everything I know regarding apples.  Apples can be red or green or yellow.  They can be solid colored or speckled or mildly striped or splotchy in appearance.  There are crab apples as small as a cherry and honey crisps as large as a grapefruit, but most apples are around the size of a fist.  They are somewhat round but not completely.  They have little bumps on the bottoms, similar to the base of a pepper.  They are usually sweet but some, like granny smiths, can be tart.  The best time for apple picking is the fall. Apples can be used in recipes for…

My mind races on and on, yanking out every fact it can find that has anything to do with an apple.  There’s times it’s almost like a data overload because so many facts will surface at once.  After all, I KNOW what an apple is.  I’ve had many apples over the years.  But at no point can I conjure up even a simple picture of one.

When my brain first made that connection that other people could see things in their minds, I couldn’t help but feel like THAT was the abnormality because the very idea felt so foreign and alien to me. For months, I questioned friends with seemingly stupid questions. “If someone tells you to close your eyes and imagine an apple, can you actually see one?  Like not just KNOW what an apple is but clearly see one IN YOUR HEAD as if it was sitting right there in front of you?”

Again and again, the answer came back as a resounding yes, of course they could.  Everyone I knew seemed to be able to conjure up images in their brains like their own personal movie screen.  Everyone, that is, but me.  It was like that one game we all played as children where one of these things was not like the others and it turned out I was the odd man out, the one that was different.

Over the years, I’ve periodically looked for others who might be experiencing something similar.  As my children grew older, I even questioned them to see whether they had the ability to visualize.  I do not know whether the condition CAN be hereditary or not, but none of my three children share this trait with me.  They can all visualize just fine.

It wasn’t until recently that I even stumbled across the term aphantasia.  For decades, I just referred to it as an inability to visualize, doing my best to explain that all my brain could ever muster up was a series of words to describe and connect things but never a single picture.  From time to time, I would randomly still ask others if they could visualize in their mind’s eye, hoping to find someone else who might be like me, but I never had any such luck.  That is, until around two years ago when I stumbled completely by accident onto a research study being done in the UK for Aphantasia.

I was beyond excited.  I was elated.  I was no longer some random ugly duckling, alone and unique in all the world.  My brain wasn’t broken, flawed, some freak abomination that existed outside the realm of everyone else.  It turned out this was an actual medical condition that affected as many as one in fifty people to varying degrees.

I found myself reaching out to the scientist that was heading the research study into aphantasia, explaining that it affected me, too.  I was sent a series of questionnaires to fill out for him to add to his research data.  We emailed back and forth a few times over the next few weeks.  It was wonderful just knowing that I wasn’t broken or crazy after all.  When I found out about my mthfr genetic mutation a short while later, I contacted him about that, as well.  I do not know whether it is in any way related, but I wanted his data on my case to be as complete as possible.

Aphantasia is not a disability.  It is more of a nuisance.  Where other people can immediately conjure up images from thoughts, my brain is left to sort through piles of data, an inner dialogue of words, for what is relevant to every situation at hand.  I often joke about how, though most people put in their two cents, I stop closer to a quarter, but in actuality that is just how my mind has always worked.  I have frequent data overloads in my head and tend to ramble on subjects until I get it all out.

I’ve been complimented numerous times on my writing, how people love the comparisons I draw and the flowery words I use to describe everything.  It is not anything I have ever done intentionally.  My mind is just chock full of words because it is void of imagery.

Over the years, I have felt the impact of my aphantasia in many ways that other people take for granted.  For instance, I am absolutely horrible with facial recognition.  I might look at someone that I have seen dozens of times and have trouble putting a name to the face because they have changed something as simple as their hair color, gotten a hair cut or put on some weight.  I know that I know them, that there’s something about them that is familiar, but until I dig through the databases in my mind looking for other connections beyond physical traits like their eye color, nose shape or height, I’m often at a loss.  I wait for someone else to mention a name or a location or occasion connected to them, something to make that connection click.

I have no memories of my past, at least not in the way that others experience them.  Others can close their eyes and be transported back to a sunny beach they visited years ago, reliving the beauty of the moment.  For me, all I have is a stream of facts.  I can tell you the approximate dates I was there, can tell you how blue the water was, comparing it to other recollections I have to similar shades of blue.  I can tell you how warm the air felt by comparing it to other types of warmth, but I can never relive that day.  My mind catalogues data.  It does not retain memories.

Perhaps the worst affect that I feel from aphantasia is the weight on my heart.  When my children leave to go to their dad’s house or to go back to their dorm, I cannot close my eyes and picture them here again with me.  I can look at a photo of them but that is the only image I’ll have until I see them again.  I am very partial to photographs and videos because it gives me actual glimpses back in time, something my own mind cannot do.

I lost both my parents in 2010.  I don’t possess any pictures of either of them so their faces are lost to me forever.  I can list off basic facts like the crows feet that spiderwebbed beneath his eyes or the fact that my mother used to furrow her brow when she was upset or deep in thought but I can never close my eyes and picture their faces ever again, can never see the way the corners of my dad’s mouth would turn up into a smirk when he was about to tell a punchline of a joke or see the way my mother’s nose would crinkle when she would sample a taste of something she was cooking.  I know those things happened because the words are locked away in my brain’s database, but the actual images of those moments have been lost forever to me.

Over the years, I’ve come to realize just how often everyone else relies on visualization and it makes my condition feel even more glaring.  Last year, for instance, I began taking meditation classes hoping to add to my mental wellness toolbox.  I sat in a group with several others talking about breathing exercises and conscious breathing.  Then it came time to begin our first actual group meditation.  We were all told to close our eyes, uncross our legs, loosen our muscles, to place our feet squarely on the floor and rest our hands flat on our thighs.  We were guided to pay attention to our breathing, the slow in and the out, to feel the air around us and to be in the moment, fully aware of ourselves and our bodies.  So far, so good.  Then the instructor told everyone to imagine a small ball of light glowing inside themselves, in their core, to see its brightness, feel its warmth, to imagine it growing inside us, filling us, to see the light expanding beyond ourselves, encircling us, filling the room, expanding outwards, continuing to grow.

And THAT was completely where she lost me.  When I closed my eyes, all I could see was black.  There was no glowing orb and there never would be.  I had words within my head to compare to lights with a soft glow or of lights expanding similar to the approach of dawn, but no matter how hard I might try, I could never visualize that ball of light, or roots connecting my feet to the earth to center me or any of the other visualizations commonly used in meditation.  Meditation techniques commonly used by everyone else are completely lost on me because they rely heavily on visualization.  For me, meditation has become about situational awareness, of feeling my breath flowing in and out, of feeling my heart beating and feeling the sensation of the air on my skin.  I cannot imagine and visualize anything flowing and growing around myself so instead I use meditation to pull myself into the here and now, to concentrate on my body in the present and to try to silence my mind.

In the last year, I have realized my aphantasia goes beyond an inability to visualize.  In another “mind blown” moment, I had someone ask me whether I could mentally recall other senses, such as the way things tasted, smelled or felt.  I realized all recollections of those senses were just words, as well.  I could tell you that I remember the sweetness of a cupcake or how well water smelled similar to hard-boiled eggs or how a fleece blanket felt soft and furry like a baby animal.  But they are all words.  I cannot taste that cupcake again nor smell that egg smell nor feel the sensation of that soft fleece again on my fingertips.  I have the words to describe them all because I have experienced them all before but I cannot relive any of those moments again.

Perhaps the only sensation I am able to recall to any extent is pain and that is very limited.  I suffer from PTSD due to physical and sexual abuse over the years.  There are times when I have flashbacks, reliving those moments of abuse all over again, where I swear I can feel the blows again.  I am not sure if it is a matter of muscle memory tied to the PTSD itself or if it is a genuine recollection of some sort.  All I know is that it only occurs during flashbacks and it is only physical pain that my body can recall.  Unfortunately, following PTSD flashbacks, I am physically, mentally and emotionally exhausted so I have never been able to delve into those recollections more.

These days, I often describe my aphantasia as a type of blindness in my mind’s eye.  I think back to watching The Miracle Worker, the story about Anne Sullivan teaching a young, blind and deaf Helen Keller how to communicate.  Helen Keller couldn’t see the water because she was blind.  Again and again, Annie Sullivan signed the word for water into her hand until her mind made that connection.  She could not see the water, would never see the water, but her mind was able to make that connection.  That word meant water.  That is how aphantasia works within my head.  I close my eyes and my mind’s eye is blind.  My mind cannot see the water, cannot see an apple, it will never see anything.  But it makes those connections of words to items.  I might not be able to ever visualize an apple, but my mind possesses the words to know what an apple is.

Aphantasia is a condition where the brain is unable to form images or visualize.  It is a condition that often leaves its sufferers feeling broken and alone, as if their very brain is flawed and doesn’t work like everyone else’s.  Current studies show that it affects approximately one in fifty people.  It is not considered a disability or an illness but rather more of a hindrance or nuisance because it affects a person’s overall quality of life.  Unfortunately, though, there is very little research currently available on the subject to explain what causes it nor is there any cure.  It is just something that I, and many others like me, have learned to live with over the years.  Whenever we close our eyes, our world fades to black.

Republished on The Mighty on 6/11/18.

Republished on Yahoo Lifestyle on 6/11/18.

Republished on Yahoo News – India on 6/11/18.

Republished on Yahoo News – Singapore on 6/11/18.

Republished on Yahoo News – Canada on 6/11/18.

Fighting Suicide From A New Perspective

I’m not going to lie.  I’ve been suicidal a handful of times in my past and have had a couple serious attempts.  I also struggle with suicidal ideation – those abstract thoughts not about wanting to die as much as just being so exhausted from struggling to live.  There have been so many times I have laid in bed sobbing, convinced I could not make it one more day.

These days, though I am still struggling with my mental health, I try to keep both active suicidal thoughts and suicidal ideation at bay.  Someone very dear to me almost lost one of their parents to suicide when they were a teenager.  They were the one who found them, who had to try to revive them and call 911.  Over a decade later, though their parent survived, they are still dealing with the aftermath.  Whenever thoughts of suicide or suicidal ideation creep into my mind, I think of all that they went through and tell myself that I could never do that to my own children, that I could not break their hearts like that.

For a while now, whenever someone has asked what keeps me going or why I haven’t given up, that has been my answer.  My children.  I love them more than I could even put into words and I would never want to hurt them like that.  There have been many times that my life has felt so hopeless, so horrible, that they were my only reason to keep going, my only reason to hold on.  I loved them too much to hurt them by giving up.

However, I saw something recently that threw everything on its side and turned my world upside down.  It was one of hundreds of little images that scroll along my social media feeds everyday.  Normally, while sitting online chatting with friends, I scroll by dozens of images like it, half-reading them as my attention strays elsewhere.  This one, however, not only grabbed my attention but shook me to the core. It said:

Suicidal people deserve better than to be told the main reason they shouldn’t kill themselves is because of how it might affect others. Suicidal people deserve love and help, not guilt trips.  Suicidal people deserve to feel like their life is worth living, for their own sake..  for their own happiness, their own experiences, their own possibilities, their own future.

I’ve been chalking my own battles with suicide as a victory merely because I have managed to push them aside and keep them at bay because I don’t want to hurt my own children.  Somehow that no longer feels like enough.  What if, heaven forbid, something ever happened to my children and I didn’t have them anymore as my reason to keep going?  Was I just going to throw in the towel, give up, lay down and die?  As much as I love my children, they cannot be my only reason to keep living, to keep fighting, to keep going on.  I deserve better than that.  They deserve better than that, too.

Right now, I am struggling in many aspects of my life.  I am dealing with a lot of personal issues above and beyond the ongoing battle of living with mental illness.  There are many days that I feel like I’m hanging on by a thread as my world continues to crumble at my feet.  I’m not going to lie and say that everything is peachy in my life because nothing could be farther from the truth.  I’ve spent too many years lying and convincing everyone that everything was okay as I was falling apart inside.  I cannot live like that anymore.  My life is a mess right now, but I own it.  It is MY mess.

But within the jumbled mess I call my life, I must find my own reasons to hold on, my own reasons to keep living, my own reasons to keep fighting, keep going and not give up.  I must learn to love myself enough that I do not want to hurt MYSELF the way that I’ve kept saying I don’t want to hurt my children.  I must learn to appreciate myself and all I have to offer.  I must plan for a future that I’ll be proud to live and aim for goals that will give me a sense of fulfillment for my own sake.  I need to get to a place where I am living for MYSELF and not because I don’t want to hurt someone else.

That is easier said than done.  It is easier for me to keep living for my children than to keep living for myself because in all honesty I love them more than I ever loved myself.  I have a long way to go.  I am just learning to like myself.  But it is a journey I must take and a goal I must meet.  One day, when I talk about all those times when life felt so horrible that I wanted to give up and someone asks me what kept me going, I want to be able to say “I kept going because I loved myself too much to hurt myself like that” and truly mean it with all my heart.

Until then, I’ll hold on however I have to and keep going, keep fighting because I can’t give up.

But one day, I WILL get there.

Because I owe it to myself to live for myself.

 

…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.

Responding to Voices from My Past

In the last month or so, I have received a handful of messages and emails from people from my childhood: old friends, neighbors and classmates I haven’t spoken to since I was a teenager almost twenty five years ago.  They had seen my t.v. interview, read my book and my blog and all felt the desire to reach out to me.

I haven’t been able to bring myself to reply to any of them yet.  It isn’t that I doubted their sincerity or that I didn’t appreciate their compassion or empathy.  Truthfully, each letter brought me to tears and meant more than any of them could imagine.  It’s that honestly I do not yet possess the words to respond.

For almost twenty five years now, I’ve been running from my past.  When I was a child, I was trapped in a hell I never thought I would never escape.  When my mother shot my father and my world turned upside down, I saw it as an opening, my one chance to get away and free myself from my past.  I began to run, pushing everything behind me, hoping if I ran long enough, fast enough, far enough, I might one day finally be free.

I still carry with me an odd mixture of unresolved feelings from those years.  Beyond the hurt and the anger that others might feel is only logical, there resides other emotions that are not as easily explained and even harder to process and move beyond.

I carry with me shame for some of the things that happened, because I allowed them to happen, though I know deep down that I was just a child who had her will crushed and had lost her ability to say no.

I carry with me guilt for not being stronger, not being able to fight harder, to be braver, to make it through more intact instead of the crumbling mess I often feel I become when I allow myself to return to that time and place.

I carry with me regret that I distanced myself over the years from so many people, due to no fault of their own, simply because their place in my life existed in close proximity to traumas I was trying to escape.

I carry with me an irrational fear of reopening doors from my past because my past is where all the most terrifying monsters I’ve known reside and part of me worries that reopening one door might open the floodgates, allowing everything to rush back at once.

Beneath it all resides a jumble of other feelings I have yet to even unearth or decipher.  Just when the waters surrounding me appear to calm, they wash over me unexpectedly like waves in a storm, threatening to throw me overboard again.  For years now, I’ve been fighting to stay afloat while I work my way through each wave as it appears.

I’m slowly letting down walls, reaching out and trying to let people back in but it is not easy.  It is a painfully slow process, untangling those threads of my past from the jumble of razor wires that had cut me so deeply all those years ago.  I am truly grateful beyond the words I currently possess for every kind and gentle word they have extended my way and do not intend to leave their letters unanswered.  I just need to first find the strength to delve back into my past, the courage to face my fears and find the words to help rebuild bridges I burned long ago in my haste to flee from the nightmares I feared I would never escape.

 

The Evolution from Dysfunctional to Healthy Love

From the beginning, my views on love and relationships were dysfunctional. I was surrounded by people who were supposed to love each other, though in so many ways what was between them was anything but. At six years old, I had a mock wedding with a young boy down the street that I couldn’t stand because we both believed people got married to argue and couldn’t think of anyone else either of us hated more. That speaks volumes about my earliest views on love.

Yet strangely I grew up to be in many ways a hopeless romantic. I believed in the presence of love, at least in theory. I believed in the happily ever after of fairy tales and the foot pop that occured with true love’s kiss. I believed with all my heart that there was someone out there for everyone, that one beautifully wonderful love that would remain strong and endure even through the roughest of times, a love that could stand the test of time. Though I had never personally seen such a love, I believed wholeheartedly that it was out there. I just honestly had no idea how to find it or where to even begin to look.

When I was a teenager and began to date, love was about fulfilling expectations. Identities seemed to be linked to pairing with others. Everyone strived to date because to be single meant something was wrong with you. Being with someone reaffirmed your worth somehow to others. It was never about how I felt, what I wanted or how I was treated. Being in a relationship, being in ‘love’, meant fitting in, being somebody. When I found what I thought might be love, I held on for dear life. I believed it was him and me against the world and love could conquer anything. I had been prepared to face anything with him at my side, never realizing that I was fighting a losing battle because you cannot keep someone there who wishes to be elsewhere. After years together, he blessed me with a child and then he ran. Despite all the faith I had in love, I found myself alone again. Yet at the same time, I would never be completely alone again.

On the verge of my twenties, I became a young mother. Everything in my life changed, love most of all. When I began looking to open my heart again, love became about family. When I searched for love again, it was ultimately to create a strong family, to find someone who would be good for my daughter, someone I could build upon my family with, growing it into something more. Love wasn’t about me at all. Love was about building a marriage, a family, trying to hold on and make everything work despite how I was feeling or hurting. Love was about being the best mother I could be and about trying to be what I believed a wife should be. Love was about playing roles and going through the motions. We were young. What did we even know about love? In hindsight, I’ve often said that what two kids in puppy love think they want turns out to be much different than what two adults in the real world need. In the end, we were just too different. We were never meant to last.  But I was blessed with beautiful sons that made it all worth it.

When my marriage fell apart, I felt so unlovable, unwanted, like such a failure for being unable to somehow hold everything together. Love was something I was terrified of finding again. I had never been more vulnerable, more scared of letting anyone in. An unlikely and unusual love still managed to push its way in, a love surrounded by safety and bonding over similarities and shared loneliness. My heart didn’t stop to consider longevity or practicality, it was just grateful to finally matter to someone. For the first time, albeit briefly, I didn’t feel invisible or inconsequential. Somehow, for the first time ever, I fit into the equation. Love became about holding tightly to someone who I could trust, could talk to, someone who I knew wouldn’t hurt me, was incapable of hurting me. It didn’t last long, burning hot and bright before fading to ashes swept away in the wind, but it was enough to open my heart back up, make me believe in the possibility of love again.

While rebuilding after the ashes, I stumbled onto a narcissist with a gift for playing the victim. He had supposedly been through so much and I found myself desperately wanting to take care of him, to somehow make his life better. My heart had been opened wide and he took full advantage of my empathy and vulnerability. For over a decade, throughout all of my thirties, love became about trying to take care of him, to help heal his wounds, trying to be enough for him, wishing that at some point I would begin to matter, too. For eleven years, I hoped that if I was just there enough, loved him enough, he would be able to heal, to change and we would finally be able to build something real and lasting. I had so much faith in the power of love that I was unprepared for someone who was incapable of letting anyone else in or loving anyone else in return. Love became very codependent, with my accepting abuse and making excuses for his transgressions instead of holding him accountable for all the hurt he kept causing. When he finally left me for someone else, the last in a long line of infidelities throughout our relationship, it was a blessing because my heart and soul had become so battered and broken by years of trying to give all the love within myself while receiving nothing in return. I had become an empty vessel. Yet somehow, I still believed in love.

Overlapping the pain from loving a man incapable of ever loving me back sprouted a new and unexpected type of love, one born out of a close friendship. It was much like the ill-fated love I had stumbled onto over a decade earlier when my marriage had collapsed, but at the same time, it was so different and so much more. He became my best friend, my confidante, the one person who truly saw me, knew me, accepted and loved me completely for who I was without judgment. If not for his presence during most of the eleven years of narcissistic abuse by my ex, I would not have survived the ordeal. I loved him for it, loved him more than I probably ever should have. Over the years, it grew into more than friendship for us both, though it was always suppressed by our obligations and commitments to others. When we were finally set free from the nightmare of our relationships with others, however, free to finally possibly explore what was between us, everything had already irreparably changed. The damage was already done. Though I still believed in love, believed in him and the vision we had carried for years of an ‘us’, he had given up on himself, on his future, on me, on love itself. Love needs to be fed and nurtured to flourish and grow. Love cannot be sustained by only one person. If both aren’t willing to put in the effort, it will wither and die. Though the foundation was strong, the walls still crumbled because there was only so long I could hold on by myself, only so long I could be the only one trying to make things work before I had to give up in order to save myself from dying along with our love. It was never that I didn’t love him or want to be with him. I just ultimately needed more than he was capable or willing to give.

In my journey through life, my search for love, my perceptions on love itself have changed again and again. Both my first views and my first experiences with love were highly dysfunctional. Over the years, with each new relationship, a different facet of love presented itself, each a piece to the puzzle, a fragment of the whole. With each new facet, a new perception of love emerged for me, as well. Though each love seemed to have so much possibility in the beginning, looking back, I can understand why each failed in time because love must be whole in order to work. Both partners need to matter, to fit into the equation. Both partners must be willing to put in their all, as well. Over the years, I have found fragments of love, each different, though none could stand the test of time. Though strangely, out of the rubble of all these failed relationships, a new love I had never expected has taken root and begun to grow.

As a child of abuse and dysfunction, over the years I’ve struggled to even like myself, drawing my worth from the warped views of others around me instead of from within. I never expected to ever truly love myself. Yet somehow that love crept in, took root and began to grow, like a daisy sprouting through the cracks in the concrete, refusing to give up or give in, fighting to survive. Though it was never nurtured, it managed to grow just the same. I once saw a simplistically beautiful motivational saying that stated “The moment you start wondering whether you deserve better, You do”. And the truth of the matter is that I do deserve better. I will no longer accept fragments when I deserve a whole. I will no longer settle for loving anyone who isn’t willing or capable of loving me back just as much in return. I love myself too much to set myself up to be hurt again.

Though I’m still honestly not sure where to find that fairy tale love, the hopeless romantic in me still wholeheartedly believes it exists. I will learn from my past, from my failed relationships and heartbreaks, and move forward in a healthier way. I will no longer settle for less than I deserve nor will I ever allow myself again to be abused or to become inconsequential. As much as I crave love in my life, I would rather be alone than mistreated, rather be single than be fed empty words or false hope. I believe, in time, love will once again present itself and this time I will be ready for it. I am willing to fight for love, to put all of myself into a relationship, though this time around, I will settle for nothing less than that in return.

What It Is Like To Live With The Stigma of Mental Illness & Why We Need To Fight It

More and more often, you see blurbs and motivational pics across the internet from people talking about fighting the stigma of mental illness.  People bravely proclaiming they are no longer afraid, no longer ashamed of their diagnosis, encouraging others to speak out, as well.  For those who haven’t ever suffered silently through their own battles, it might seem like no big deal.  A non-issue.  You might think we’re attention-seekers, making mountains out of molehills.  You may rationalize that the majority of people don’t fully understand many different illnesses, yet all those other people aren’t going around proclaiming they’re battling any stigmas – they’re just going on with their lives, playing the cards they were dealt.  You may wonder why we cannot just quietly do the same thing.

Those suffering from mental illnesses have faced years, decades, lifetimes of persecution and discrimination.  We have been painted in books, television and movies as everything from dangerous monsters to dim-witted jokes.  We are looked at with fear, as if every misdeed and violent crime that occurs was due to mental illness.  Instead of sympathy or compassion, we are turned into one-liners and punchlines.  Though the majority of us have done nothing wrong, we find ourselves needing to reassure others that we are not a danger to ourselves or others.  We often bite our lips to keep from yelling out that we are not a joke, not wanting to be accused of having no sense of humor.

People assume that we are lazy, or just being negative.  They assume we’re just not trying hard enough to be happy, as if feeling this way was a choice.  We’re treated as if it was all in our heads and told our lives would be better if we just tried a little harder to be positive or if we truly accepted one religion or another into our lives.

We’re painted as being flawed, looney, touched in the head.  We’re told we have a screw loose, as if we’re broken.  We’re told we’re mental or basket cases because we cannot rein in our minds and force them to function properly by sheer will-power alone.

We’re treated like we’re weak because we may need therapy or medication.  We’re told our lives can’t be that bad or reminded that others have it worse, leaving us feeling like we either have to hold things in because others have minimized them, or forcing us to defend and justify our feelings as being worthy of acknowledgement.  We’re looked upon with pity, like we’re poor damaged souls who aren’t even strong enough to deal with our own emotions.  We’re told big kids don’t cry, women don’t cry, men don’t cry – only babies cry.  Suck it up.

We’re surrounded every day by people talking about mental illness in a negative light.  The media is quick to highlight if anyone has a history of mental illness when covering a crime, but is slow to report that, according to recent studies, we are three times as likely to be the victim of a crime than the offender.  According to these studies, the overwhelming majority of violence committed by the mentally ill occur in residential mental health facilities not in the public.  A large majority of the mentally ill that had reported abuse had been victimized on multiple occasions.  Yet we are treated as if we are the dangerous ones that need to be avoided.

North Carolina State University. “Mentally ill more likely to be victims, not perpetrators, of violence, study shows.” ScienceDaily. ScienceDaily, 25 February 2014.

Popular culture has portrayed us all as blossoming psychopaths, well on our way to committing heinous crimes.  People openly talk about how we should all be locked away, not only for our own safety but the safety of others, as well.  People petition for us to have our basic rights stripped away, like the right to bear arms, and demand databases where we must all be registered and tracked, as if we have all guilty of some crime just in being ill.  Whenever one person who happens to be mentally ill commits a crime, we all hold our breath because somehow we know we’ll all be painted with that same broad brush.

We are forever biting our tongues as our illness is being treated as a joke.  Some use our diagnosis as an adjective, like it somehow defines us, sometimes interchanging it with derogatory slang like crazy.  Others misuse clinical words that refer to integral parts of our illness to describe mundane things, like using the word ‘triggered’ to describe something that just randomly upset them.  Whenever anyone has anything seriously wrong with them, they are labelled as mental.  Since we are all painted with the same broad brush strokes, people assume we’re all equally “unbalanced”.

There is no other illness or disease that carries the stigma with it that mental illness does.  It is an invisible illness.  Since people cannot see it, they are quick to doubt it or to minimize its effects.  Nobody would look at someone with a broken leg and suggest they should just try harder to walk.  Likewise, nobody would shame a diabetic for needing to take insulin to regulate their sugar and stay healthy.  It is acceptable to treat other organs and body parts that are not working properly, but for some strange reason, things are different when it comes to our brains.

There is sympathy for people suffering through cancer or Crohn’s or other illnesses and diseases where a person’s body began going haywire, fighting against itself.  People reach out in droves, wanting to help, to make sure they’ll be okay and know they have support.  We’re battling our own minds on a daily basis, yet instead of sympathy or support, we’re met with accusations and anger.  Asked why we haven’t just gotten over this yet.  We’re called drama queens and accused of being attention seekers.

We face this stigma every single day.  We hear it in the hallways at school and around the water cooler at work.  We hear it from family and friends.  We hear it from those who mean well but are uneducated about mental illness and think it will all fade away if we just smile and pray a little more.  We hear it from those who think they “know better” who tell us because they’ve gotten past their struggles, we should suck it up and get over ours, too.  And we hear it from those doubting mustafas who assume it’s “all in our heads and are just plain tired of hearing us whine”.  We hear it in your jokes and your angry rallying cries that because one mentally ill person committed some crime, we should all be rounded up and locked away.  We face the stigma EVERY. SINGLE. DAY. from every avenue of our life.

For those who still do not get why the fight against the stigma is such a big deal, please try to imagine being surrounded by people who make you feel, by their words and their actions, that your entire existence is inherently wrong, including every single thing you are feeling inside.  That you are broken and flawed, that you are both dangerous and a joke for things going on in your body that you have no control over.  Then take into consideration that many recent studies have shown that one in five people will struggle with some type of mental illness over the course of their lifetime.  That’s millions and millions of people: fathers, mothers, husbands, wives, sisters, brothers, children, bosses, co-workers, friends.  If you have a family of five, chances are one of your family members will struggle one day.  If you work in an office of twenty, the odds are high that four of your co-workers are suffering.  If you cannot fathom what it is like living with mental illness yourself, count yourself blessed.

National Alliance on Mental Illness. “Mental Health By The Numbers” NAMI.

Most of us who are suffering from a mental illness have spent our lives afraid to speak up, afraid to speak out because of this stigma.  We don’t want to be labeled as crazy, batty, looney or touched in the head.  We don’t want to pitied, or treated like we’re fragile, broken or damaged.  We don’t want to be doubted or forced to justify our own suffering and struggles in order to have them validated.  We don’t want to all be painted with the same broad brush, treated as both a criminal and a joke because we are mentally ill.

When we speak up, speak out and declare we’ve had enough of the stigma, it isn’t making mountains out of mole hills or crying out for attention.  It is an amazingly huge thing.  It is one of us speaking out that we can no longer suffer in silence, struggling alone to fight our illness.  It is one of us finally accepting that we are not broken, flawed, damaged or mental as society has made us feel our entire lives.  It is us saying “I will no longer allow anyone else to make me feel ashamed of my illness”.  It is one of us stepping up and saying “I am NOT my mental illness and I WILL NOT let it beat me!”.  It is us speaking out, hoping to add our voice to the collective, hoping to be a force for change because we don’t want our children, and our children’s children to hide in the shadows, ashamed of their own diagnosis, afraid to speak out and ask for help.

I am both extremely proud and grateful to each and every person who has faced the stigma head on and found the strength to speak out about their own struggles.  Please never doubt that your words have mattered or carried any weight because for each of us that speaks up, there is someone else still suffering in silence who needs that extra little bit of courage, to know they’re not alone and that others truly understand.  We need to be that voice of strength and to continue that chain until our voices one day can all shout in unison “ENOUGH!”  Never give up.  Never stop fighting.  We CAN make a difference.

ENOUGH!

 

Republished on The Mighty on 1/27/17.

Stunted by Abuse

On my more lighthearted days, when my depression and anxiety don’t hang quite so heavily on me, I will sometimes joke about being a big kid trapped in an adult’s body, or a not-so-big kid, because I am shorter than most kids over the age of twelve.  However, on those deeper, darker days, when my mental illness bears down more heavily on my mind and soul, I’m painfully aware that all the abuse I have endured has stunted me in many ways.

I always try to embrace my inner child because there is such a pure sweetness inside of me, a love for life, thirst for knowledge and a hunger for anything creative and fun.  Even at forty, I love swinging on swings and having water balloon fights.  I can never resist twirling in sun showers, catching raindrops on my tongue or making snow angels in the first real snowfall of the season.

Yet the other side of that little girl inside of me is present more often and is far more vocal.  I rarely talk about her, though she is present more often than the sweet, little playful youth I so thoroughly adore.  Emotionally, I don’t think I ever fully matured beyond the child I was when the abuses and traumas were at their worst.  While I might fully embrace my inner child, with her innocent wonderment and playful silliness, beneath that resides this scared little girl who has been battered and abused, who never learned the tools to cope and lives her life terrified of the monsters in the closet, under the bed and in my own head.

Like a child, I am often over-emotional and easily wounded.  Like a child, I cannot understand the cruelty and indifference of other people.  Deep down, a part of me still clings to those innocent fairy tale stories with their happily ever afters and knights in shining armor.  A large part of me cannot understand why my life is so hard, my struggles so arduous and my heart so broken.  Like a child, nothing quite makes sense to me and I have that overwhelming desire to just ask “WHY?” a thousand times a day.

I have trouble processing, trouble understanding and trouble coping with everything, whether it is a smaller, every day occurrence or an event with a larger impact on my life.  I cling too tightly to those I care about and need because I am terrified of being alone, abandoned, and left to fend for myself again.  Like that child I was years ago, I find myself starving for approval and love, willing to do anything, be anything, just to have someone stay and love me.  I reside in a terrifying place of confusion, loss and desperation.  My inner child wants to cling to everyone and cry out “Please don’t leave me!  I’ll be good!  I promise!  I’m scared!  I don’t want to be alone!” over every single thing in life because it all seems too big, too overwhelming to deal with on my own.

While the other facets of my mental illness can be approached with practicality and reason, addressed with therapy and medication, I honestly have no clue how to deal with the fact that I have been stunted in many ways.  How do I learn to grow up when I am already a grown adult?  How do I stop being that frightened little girl inside, overwhelmed by the entire world, scared to come out, terrified of being hurt again?  Children are usually nurtured as they are ushered into adulthood, being taught how to cope and given the tools to adjust along the way.  I was thrown into the harsh realities of a cruel and unjust world before I was ever ready to face them and have spent my entire life scampering around, stuck in the mentality of that terrified little girl who just wants all those monsters to go away and for everything to be okay again.

I honestly don’t know how to address or change that part of myself.  I don’t know how to stop being that clingy, confused, lost little girl who is terrified of the world around her.  Part of me wishes I could be stronger, braver, more grown up and able to adjust, cope and problem solve all my issues away.  Unfortunately, a much larger part of myself cannot stop crying inside and just wants someone to scoop me up, hold me tightly and reassure me that everything will be okay, that this has all just been a bad dream.

Republished on The Mighty on 1/26/17.