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.

To the Mother I Never Knew..

As Mother’s Day came and went this past year, I once again found myself with conflicting feelings.  Part of me wanted desperately to join in with friends who were fondly honoring their moms or mourning the mothers they had lost over the years.  Another part of me, however, felt numb and empty, because I never had that type of cherished bond with my mother.  I honestly never knew her.

No, my mother didn’t die when I was born.  She passed away 8 years ago this Thanksgiving Day.  No, she didn’t give me up for adoption nor did she abandon me.  The truth is that my mother was there throughout the majority of my childhood and sporadically at best throughout my adult years.  I just never really knew her because the woman she truly was was buried deep beneath often untreated, always undertreated, mental illness.

Growing up, my mother was one of my biggest abusers, both mentally and physically.  She was prone to severe mood swings that would shift into bouts of rage at the drop of a dime.  She had bipolar disorder.

We were estranged for the last few years of her life.  I could no longer handle the abuse nor did I want my children subjected to it.  It seemed that her medication was never quite balanced nor were her moods.  It always felt like what little treatment she did receive was not helping, was not working, and she was doing very little to proactively work towards correcting anything.  She felt to me like a ticking time bomb, one I was afraid would go off at any moment and I did not want my children caught in the crossfire.

Over the years as I have struggled with my own mental illnesses, I have come to deeply regret those feelings.  I was diagnosed with depression, anxiety disorder and PTSD, labelled treatment resistant for years.  No medication ever seemed to work.  It wasn’t until the last year or two that I discovered via genetic testing that my resistance was caused in great part to a genetic mutation.  I’ve often wondered since then if my mother suffered from the same mutation.

The truth is that mental illness changes a person, or perhaps more appropriately it snuffs that person out, dimming their light and dulling their soul.  The person that you are is trapped underneath, desperately needing to come out, wanting to shine.  But there is this dark hopelessness that oozes over everything, making it impossible to fully be the person you truly are.

I think about my own children and how my diagnosis has affected them.  They have only seen glimpses of the real me over the years.  The creative me who would spend half the day drawing huge murals with sidewalk chalk on the tennis courts at the park with them on summer days.  The silly me who would make paper pirate hats and eye patches, transforming our dining room chairs into a pirate ship to celebrate Talk Like A Pirate Day with them.  The nurturing and educational me who would catch tadpoles in buckets with them to show them how they turned into frogs.

More than anything, though, they saw my mental illness.  They saw the mom who was too exhausted just from going through the daily motions of life to do anything fun.  They saw the mom who opted for quiet family days indoors watching movies or playing board games because I was physically and mentally unable to do anything more.  They saw the mom who often emerged from the bathroom drying my eyes as I attempted to hide the tears I could never seem to stop from flowing.

They were vaguely aware of the person I truly was but they knew my mental illness well.

I remember when I first started taking the medication I needed for my genetic mutation and I had my first truly happy moment.  It was the first time in my life I ever felt that sludge of mental illness be lifted off of me, albeit for a short period of time.  The medication is not a panacea.  It in no way cures or stops my mental illness.  However, it does give my mind the ability to fight back in a way that it never could before.

That moment of happiness was beyond blissful.  I laughed, cried and hugged my boys, asking them again and again if that was truly what happiness felt like.  I had never experienced anything else like it.  That sludge continues to lift here and there sporadically and I have a genuine hope for the future now, that there might be a day when there’s more periods of happiness than illness.  But for now, more days than not, I still struggle.

I have heard from people that knew my mother at the end of her life, in those last couple years, that she had finally gotten the treatment she needed.  Her medication was finally balanced.  She was happy and more herself than she had ever been before.  She was doing crafts with the neighborhood children and even developed a fondness for Harry Potter.

Part of me envies them because I never knew that woman.  I never had the pleasure of meeting her.  All I ever knew was the sludge and taint of her illness.  On Mother’s Day, I mourned the ghost of a woman I never even met, a woman I would have loved more than anything to know.

Please keep in mind that when you’re dealing with people who are struggling with mental illness that they are not completely themselves.  The person they truly are is in there somewhere, beneath their diagnosis, fighting to get out.  Please don’t ever assume that we’re just not trying hard enough, that we’ve already given up or that we’ve lost who we are along the way.  It is a daily battle, a constant fight, against your own mind.  It is a never-ending struggle to push your way through a thick layer of darkness just to come up for air.

Looking back, I truly regret becoming estranged with my mother.  I had done what I thought was best at the time, trying to shield my children and myself from an illness that was not her fault.  She had no more control over her bipolar disorder than I do over my own mental illness.  I am sure she was trying harder, fighting more, than I ever realized.

To the mother I never knew – I’m sorry I was not there when you needed me.  I’m sorry that I allowed my fear to dictate my actions and choices and that I abandoned you when you needed me most.  I’m sorry I was not more compassionate and understanding of all that you were going through.  Most importantly, I am sorry I never had the pleasure to truly meet you.  Happy belated Mother’s Day.

Republished on The Mighty on 9/14/18.

Republished on MSN on 9/14/18.

Republished on Yahoo on 9/14/18.

Republished on Yahoo Lifestyle on 9/14/18.

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.

Life Happens..

They say life happens, whether it happens while we’re making other plans or it happens so we must deal with it or one of many other overused cliches meant to help usher us into reality.  I’m not quite sure who “they” are but they definitely hit the nail on the head with this one.  Life happens without a doubt.

My writing has been put on a back burner for a couple months now.  Both my ongoing blogs and the books I have in the works have been delayed.  It is not that I have lost interest or my passion or that I have run out of topics to write about.  Far from it. My mental health and my journey towards mental wellness are still very much a priority and are nothing I would ever give up.  Life just happened.

On a high note – after almost a year battling my insurance company over covering my Deplin, I finally won my last external appeal.  CDPHP has yet to start paying for it, but it has been deemed medically necessary by outside sources with the ability to overrule their decision.  It is a huge victory and more than worthy of a large celebratory post, but again, life happened.

On a very low and tragic note, I have hit some painfully rough waters with the man I love.  There is no need for anyone to prepare themselves for the drama or heartache of a love grown sour for we are still very much together.  Our relationship is truly one of the best things in my life right now.  It was a different sort of heartache.

His father had been ill.  Terminally ill.  We understood he did not have much more time with us, but we had expected much more than what we had been given.  It went so quickly from an untimely fall to a trip to the emergency room to the intensive care unit to hospice.  No one was ready.  I know that no one is ever truly ready for such a loss but it all happened so quickly.  Too quickly.

I’ve spent the last year deconstructing and reconstructing myself piece by piece.  I’m by no means back together quite yet.  I am a work in progress in every way.  But everything going on with myself was cast aside on the back burner so that I could be there for the man I love.  There wasn’t even a question in my mind.  I had to be there.

The man I love is a good man.  Beyond good, in my opinion, but I’m far from impartial. He has been through a lot in his life – we are kindred spirits in that sense.  He has such a warm, loving and compassionate heart.  And life had torn it clear in two.  Nothing, not my writing nor even my own well-being, was as important to me as being there however I could for him.

This was his Dad.  He had already lost his mother a few years ago and was still recovering from that.  Losing both parents leaves a hole, an emptiness that nothing else can ever truly fill.  Life had rendered him an orphan.  I knew that feeling all too well and I could not leave him to face it alone.

Hospice itself was beyond agonizing.  Nothing in life can prepare you for watching someone who was once larger than life slowly fade away.  I’ve been there myself, as well. Hospice is where my father spent his final days as his cancer ate him alive.  Though every moment of the days in hospice with his father held me in a death grip, threatening to pull me back into the past with my father, there was nowhere else I could be but at his side while he spent his final days with his own.

Next came going through the motions of the final preparations and the flurry of condolences that come with a great loss.  Though the words are heartfelt and well-meaning, they cannot even begin to penetrate the numbness that comes with the realization that someone who has always been there is truly gone.  I understood completely how he felt and where he was mentally and emotionally because I have been there myself.  It is a feeling you never forget.

As they often say – “When it rains, it pours”.  Life was not satisfied with dealing that one large heart-wrenching blow.  The last couple months provided a steady barrage of ill-timed hardships to rival even the most depressing country or blues song.  His truck – the last vehicle his mother had driven – needed work to pass inspection and stay on the road. His boat – left to him by his father as a reminder of better days and a multitude of fishing trips together – wouldn’t start and needed repairs.  His cat – given to him by his parents to help him through rough times in his past – was injured and needed to go to the vet.  It was as if every aspect of his life that was tied to his parents was collapsing and crumbling under the weight of the tragedy of his father.

Add to the mix us scrambling to find a place together.  Neither of us could continue to stay where we have each been nor did we honestly want to live separately any longer. One of the only truths we have embraced during these very uncertain times is that we not only wanted but that we NEEDED to be together.  In the short time we’ve been a couple, we’ve become a rock for each other, that light we each cling to when trying to find our way out of the darkness. We understand each other in ways no one else ever has and find a comfort in one another that has been lacking from our lives.  We belong together.

We eventually found a place in his old stomping ground out in the country, literally next door to where he had lived a few years prior.  It is a small place and I’m honestly not sure how we will fit everything into it, but we will manage.  It is familiar territory for him and we are together.  It is home.

Since moving in, we honestly have not been as productive as we probably should have striven to be, but we both needed some downtime to catch our breath, recuperate and heal.  Life has been overwhelming and we both honestly needed a break.  Some avenues of our life have suffered a bit but we have been doing our best to keep going, take care of ourselves and each other.

Life happens.  I’m numb to it at this point.  I’m honestly not sure how I have managed to not crumble into a million tiny pieces by now but somehow I’m still going.  I have to keep going because he needs me there.  Like me, he is an orphan now.  I have to keep going because I need to take care of myself, as well.  We will be okay, though.  We HAVE to be okay because in each other we have finally found what we’ve both been missing in our lives.  We are both seriously overdue for our happily ever after.

We are going to get through this, get past it.  We are going to find some way to heal and to keep going.  We are going to be okay.  We will survive and we will be okay.

They say to fake it until you make it, to keep telling yourself things until you believe it and it becomes truth.  Again, I don’t know who “they” are, but they’ve been right about everything else so I’m hoping this pans out as well.  I shall embrace my hopes for future wellness as my mantra, repeating them in the hope that in time they become reality. Because life has definitely happened and we need more than anything to be okay again.

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.

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.

Mourning Ghosts & Fairy Tales

They say everyone has a type of person they find themselves drawn to in life.  For some, it’s hair or eye color, for others it is height or build.  For me, it seems to be wounded souls with a ton of unresolved baggage and commitment issues.  I’ve always seen them as kindred spirits, assuming that, because they had so many issues themselves, they would be better equipped to handle mine.  On some level, as well, I think I’ve always hoped that if I could help them to find a better place in life, they would somehow return the favor – that by some miracle we would find a way to heal and grow together.

I have a history of unhealthy, dysfunctional relationships.  Every single serious relationship I have had has been with someone who has been surrounded by addiction, whether their own or their family’s.  I, myself, am the child of a compulsive gambler.  My father’s family was riddled with alcoholism and drug addiction, as well.  Dysfunction breeds dysfunction.  Though I never developed an addiction myself, I inherited all the bad behaviors.  Again and again, I found myself in co-dependent, destructive relationships with others who walked similar paths.  Instead of healing together, we created toxic bonds that slowly destroyed themselves from within.

I admittedly hold onto some warped version of positive ideals more than I embrace the ugly reality of people and situations.  It is easier for me to embrace the good than to dwell on the bad.  My mind longs to hold onto the happiness and discard all the pain and misery.  At the end of  each relationship, as I lay there heartbroken and emotionally shattered, again and again I would cry and mourn what I felt I had lost, blind to the truth of the situation.  I would think back to all those good times and cherished memories, unable to grasp how things could have ended so horribly.

The truth is that none of those relationships were healthy or loving, at least not for the majority of the relationship and definitely not at the end.  When someone genuinely cares for another person, they do not go out of their way to hurt them or make them feel worthless.  That is not love.  I cannot keep putting people on pedestals that do not belong there.  Too often, I have held so tightly to the concept of the person I fell in love with that I was unable to accept that they hadn’t been that person for a long time.  While the initial love may have felt pure and beautiful, the warped monstrosity that tore my heart out was anything but and does not deserve to be mourned.

I need to be honest with myself and call things out for what they are.  I cannot cling to the happily ever afters of fairy tales and attempt to forcefully align my own stories to match.  I cannot glorify the good while ignoring the bad.  I cannot cry myself to sleep because again and again my Prince has turned out to be a wolf in sheep’s clothing.  I cannot shed even one more tear for someone who does not even truly exist outside my mind, because that is exactly what I have done repeatedly.  I have built up and fabricated ideal personas of my partners that did not truly reflect who they were or how they treated me.  Each time, when things fell apart, I was heartbroken, not for the man I had lost but for who I had build him up to be in my heart, mind and soul.

Recently, when yet another relationship imploded, I found myself heartbroken and confused.  I could not understand how someone who had claimed to love me so enormously and completely could turn around and hurt me as badly as he had.  My image and memories of him conflicted with his words, actions and treatment of me.  I was at a loss.  It made no sense.  Until I realized that all of my hurt and anger stemmed not only from their actions themselves but from that conflicted state, as well.  In truth, he was not that man I embraced so fully in my heart and believed had loved me unconditionally, at least not anymore.  There is no way anyone could truly love someone and lash out the way he kept doing, repeatedly hurting me.  While he may have loved me at some point, early on, before everything began to warp and change, there was truthfully no love for me anymore.  Love is not heartless, indifferent or cruel.  In the end, he might as well have been a stranger.  Once again, I was mourning the ghost of who they used to be or perhaps who I built them up to be in my mind.  I was holding onto a fairy tale that did not exist.  I needed to let go of it all and embrace the reality of the situation.

I am not without fault.  I have many unhealthy behavior patterns I need to address and to change.  I have made poor choices and caused my share of destruction.  As I have said before, dysfunction breeds dysfunction and it is hard for unhealthy people to make healthy decisions.  However, I have always consciously tried not to intentionally hurt those I love and therein lies the difference.  But attempting to never intentionally cause pain to those I love has never been enough, nor would it ever be enough on it’s own in the future.   I also must begin to be more proactive about how I allow myself to be treated.  I do not deserve to be anyone’s doormat.  I do not deserve to be discarded and made to feel worthless until I am convenient.  You do not tell someone that you truly love that they are not a priority, in your words or your actions.  Love isn’t something you push aside and say maybe next week, next month or next year if life is more convenient then.  If you love someone, you always love them, for better or worse, in good times and bad.  You do not intentionally hurt the people you love.  Showing love doesn’t make you weak or needy or clingy.  Love should always be appreciated and cherished.  I deserve no less than a genuine, complete love because that is what I always give out wholeheartedly.

As I begin to look at myself retrospectively, to talk and to heal, I am seeing these patterns of dysfunction rear their ugly head again and again.  I need to be more aware of my choices and not fall into another unhealthy relationship again.  Much like two wrongs do not make a right, two dysfunctional people cannot make a healthy relationship, at least not while they are both stagnating in their own unhealthy messes.  That does not mean I cannot connect with another tortured soul and bond over our similar paths in life.  I just need to find someone as invested in healing and moving forward as I am, who can treat me with the compassion and understanding I deserve and love me with as much tenderness and passion as I give to him.  I need to keep walking down this path to becoming a healthier person and I deserve to have someone who will love me enough to stay at my side unwavering throughout my journey.

Opening a Big Can of Worms

Talking to My Children about My Mental Illness

For years, I tried to hide my mental illness from my children.  They were aware that I had some issues, but I downplayed the severity of my situation.  I shared joint custody of my boys with my ex-husband, with them travelling back and forth between our homes.  The entire time they were with their father each week, I would do the bare minimum, stockpiling my energy for their joyful return.  When they would arrive, I would do my best to greet them with exuberance, making plans with them and baking their favorite treats.  I would paint on a smile and pretend everything in life was as it should be, hoping to be that idealized mother I felt they deserved.  My children were my everything and I wanted every visit with me to be special, whether we ventured out to do things or stayed home for family game nights or bad movie nights.  We always made time to have extended talks about books, movies, shows, games, friends, school and life in general so that they always knew every aspect of their lives was important to me.  Meanwhile, my demons were eating me alive from the inside.  I’d take long showers, silently sobbing so they could not hear me;  After they went to bed, I would quietly sob into my pillow.  When they left to return to their father’s, I would collapse until their next visit.  Wearing that facade was exhausting.

I dreaded them discovering how bad things truly were for many reasons.  Primarily, I didn’t want them to view their mother as damaged or broken.  In my mind, parents were supposed to be these strong, invincible, larger than life entities that guide their children through life.  Children were not supposed to worry about their parents.  Their parents were not supposed to be weak or easily destroyed by their own emotions.  I was supposed to be their rock, their pillar of strength, someone they could look up to in life.  I felt that by letting them see how bad things truly were, I was somehow failing them as a mother.

I also feared their father, my ex-husband.  As much as I try to never speak unkindly about him, especially within earshot of my children, purely out of respect for the fact that he is their father, truth be told our break up was horrendous.  I carried with me the constant fear that the severity of my depression might get back to him and it would be used as a weapon for him to try to lessen my time with them.  From time to time, we would end up back in family court, him wanting to change the order for no other reason than that frequent swaps were inconvenient.  I dreaded him getting his hands on true ammunition he could use to get his way.

One of my biggest fears, though, was that my children would have questions for which there were no easy answers.  I’ve gone through different types of abuse from different people throughout my life, some of them my children genuinely admire or love.  These people, though they have caused me heartache, have always been good to my kids and I did not want to be the one to share anything with them that may cause them to see the people they cared for differently, especially their father.  There may come a day when those hard questions will be asked, but I never wanted to taint their childhood or make them feel they had to hate anyone solely based on my interactions with them.

There were a handful of times when I had breakdowns throughout their childhood and would end up admitted to an inpatient setting for a short period of time.  As far as my ex-husband knew, it was to balance medications; As far as my children were concerned, I was just feeling under the weather so I was exchanging a few days this week for some more the next.  Eventually, though, my entire life collapsed.  My then-fiance had left me for another woman.  I had no real support system and no family to turn to in my time of need.  There was no way for me to paint on a smile and pretend everything was okay.  Things were the farthest from okay they could possibly be and I was scared to death.  There was no way to hide it.

By this time, my boys were fifteen and eighteen.  They were no longer the fragile little children I had to watch over and protect, regardless of the fact that they were still my babies in my heart and mind.  I sat down with them, terrified to the bottom of my soul, and had the most honest conversation with them that I have ever had.  I didn’t go into details about a lot of my past abuse, but I didn’t sugarcoat it’s affect on me, either.  I explained the struggles ahead and all I would need to do to put my life back together and get back on my feet.  While I let them know that there was a light at the end of the tunnel, I made it clear that the journey ahead would not be an easy one for me.

I also let them know I had begun to write, having put my life’s story out there both in a book and a follow-up blog.  I was honest with them that they may want to wait until they’re older to read my book  because, while I discussed things I needed to talk about for my own self-healing, there were some hard truths in it I didn’t feel they were ready to face.  I welcomed them to read my blog, however, if they wanted to so they could follow my journey as I worked through things and healed.  I also let them know I would answer any questions they had because I did not want them worrying that things were worse than they appeared.   Both my sons hugged me tightly after our talk and have continued to do so more often since then.  They both admitted to not feeling ready to read anything I’ve written so I did not press the issue.  I had not expected them to want to read anything I wrote or to have any questions, but I wanted to leave the lines of communication open just in case they wanted to talk.

I had another blog I had begun, as well, that focused primarily on the positive aspects of my healing, that I welcomed them to read as an alternative to the blog that revolved around my struggles with mental illness.  The other day, I recommended that my older son read my most recent positive blog about stepping out of my comfort zone and trying to live my life more fully.  After reading that blog, unbeknownst to me, my son decided to follow a link to my mental illness blog.  Much to my surprise, he read every entry I had posted so far.  After finishing, he left me this message:

“after I read that article you sent me earlier, I saw the link to your blog and read it. I didn’t want to at first, but something in me told me to listen to your story and finally be able to truly empathize with you. After reading it, I can hardly believe you went through so much without reaching out for so long, and am glad you finally did.”

Truthfully, I cried when I received that message; Not small tears that cascade gracefully down your cheeks, but rather chest-wracking, snot-bubble-inducing sobs that shook my entire body.  For so long, I had been terrified of my children finding out about the extent of my mental illness, fearing that they would see me as broken or damaged or not worthy to be their mother.  Yet here was my son, after reading only a fraction of what I had endured, able to empathize with how much I had struggled.  Even more amazingly, he was proud of me for surviving it all, finally coming out with my story and reaching out for help.

The truth is, as much as in my heart and mind my children will be frozen forever as those sweet-faced, innocent babies they once were years ago, they’ve since grown into strong, intelligent, empathetic young men.  While it is every parent’s greatest fear that they will let their children down in some unforgivable way by not being that strong, unbreakable entity atop a pedestal, in reality no one can live up to that ideal.  I’m slowly beginning to accept that mental illness is nothing to be ashamed of because we all have our struggles and our demons to face.  I couldn’t be prouder of the men they’ve become or how supportive and compassionate they’ve been when facing the harsh truths about my mental illness.

Republished on The Mighty on 9/6/16.