When the Holidays Are Marred by Loss and Complex Grief

Written For The Mighty on 11/19/2020.

Holidays are usually seen as a happy time, when friends and family get together to celebrate. They are a time filled with the warm glow of decorations, delicious foods to fill our stomachs and wonderful memories in the making with the people we love. 

But sometimes everything is not that simple. When you lose someone you hold dear during the holidays, it creates a dark cloud that looms over the entire celebration, making it harder to enjoy it as you otherwise would.

Loss is hard any time of the year. But a loss during the holidays can be especially painful because everyone else expects you to be happy during the holidays. It is hard to celebrate anything when you don’t feel festive inside. It can feel near-impossible to smile when all you want to do is cry. It is hard to be around others who are happy and festive when you feel anything but, leaving you to wonder if it is just better to stay home and not ruin anyone else’s time.

Holidays are often rooted in nostalgia. Current celebrations bring back memories of other times, better times, when your loved ones were still there to celebrate with you. The sights, sounds, tastes and scents alone can make their absence even more glaring and jarring. What once were joyful recollections you shared together of other years become gut punches that leave you fighting back tears.

It can be doubly hard when you carry conflicting feelings about the person you lost. People often say that you should never speak ill of the dead, disregarding the fact that rarely in life is anything solely black or white, good or bad. The vast majority of relationships in our life exist somewhere within the realm of grays, where they are not one or the other but rather a complex combination of both. When your grief is complex, it makes mourning that much more difficult. 

My mother passed away 10 years ago Thanksgiving day. 

All my childhood holiday memories revolve primarily around my mother. She was the cook, the baker, the decorator, the present-wrapper. The holidays were largely constructed and orchestrated by her two hands. Almost every holiday tradition I’ve carried with me throughout my life originates with her. There is not a single major holiday I celebrate that does not have her fingerprints all over it.

She was my mother. She taught me to cook and bake, to sew, knit, embroider, darn and craft. She implanted in me my stubborn will to keep fighting and my love for the holidays as a whole. She is a big part of the person I am today.

She was also one of my primary abusers throughout my childhood, physically, verbally and mentally. She is one of the reasons I struggle with post-traumatic stress disorder (PTSD) and depression. She is proof that very few things exist simply as black or white. 

She is my mother. I love her as every little girl loves her mother. And at the same time I hate her. I love her for all that she has taught and given me, and I hate her for all that she’s put me through. I miss her with every fiber of my being and at the same time I could never forgive her for the darkness she put over the holidays for me. 

To better help you understand our relationship, I feel it is important to divulge a little background. Growing up, my mother was very abusive. She was struggling with often untreated, always undertreated bipolar disorder with frequent bouts of rage and I was her primary target. Our entire house was a war zone where the only way to be heard was to yell louder than the next person, and the only way to shut someone up was to lash out with the meanest, cruelest thing you could think of. After over 20 years of combat, my father walked out on our family shortly before I turned 16. My mother retaliated by driving to his work and shooting him twice. She spent the next few years bouncing between jail and mental institutions until it was ultimately pleaded out. But the damage had already been done and my life had been changed forever.

Her actions that day made it very clear to me exactly what she was capable of doing during her bouts of rage. Yet she still refused to seek help, frequently breaking down into tears or exploding with anger with no prior warning at the drop of a dime. For years, I watched in fear for my own life and the lives of my children until I finally admitted to myself that I did not feel safe. My mother and I had been estranged for a couple years when she passed away.

My mother’s death was officially listed as an accidental overdose of prescription drugs. My mother suffered from a lot of maladies and had medicine for all of them. She took dozens of different medications over the course of the day. Presumably, she had taken her medication for the day, forgotten, taken them again, forgotten and repeated this pattern multiple times before succumbing to an overdose.

I do not believe it was an accident. My mother had always been meticulous with her medication, separating it into containers designating not only days of the week, but times of the day, as well, so that she never missed a dose. 

I believe she killed herself that Thanksgiving morning 10 years ago and that, in the process, she robbed my holidays from me. 

Every year now when the holidays roll around, I struggle to enjoy them. My entire holiday season is marred by her loss.

I love her. Everything I do during the holidays comes directly from her. Yet she also hurt me worse than any other person ever has and made me feel largely unsafe in this world. She wasn’t all bad. I miss her. I feel guilty for not being there when she died. There’s an emptiness in my heart that nothing seems to fill, yet I also carry so much anger towards her. From Thanksgiving through New Years, my emotions are continuously all over the place, repeatedly being pulled one way then the other. I want to be happy, be festive, to enjoy the holidays with my family, but it’s a constant struggle.

It’s become a matter of taking everything one day at a time, sometimes one minute at a time. Allowing myself to feel everything that I am feeling because all my feelings are valid. And accepting that sometimes I’m just not in the right mindset and I need to pull back, regroup and recharge. I have learned to be gentle with myself. I do what I can when I can, and forgive myself for the things I am just not able to do during the holidays. I do my best to live in the moment and embrace the joy, but I don’t pretend that the darkness isn’t still lurking in the shadows, as well. It isn’t easy, but it is better to acknowledge and face all of my feelings, good and bad, than to shove them down deep inside and pretend they aren’t there. I celebrate when I can and step away when I cannot.

After all, none of us has to be festive all of the time — especially when we are not feeling it.

Republished on MSN on 11/20/2020.

Republished on Zenith News on 11/19/2020.

Republished on The Mental Guide on 11/2020.

My Grief and Loss Is Intertwined With My Mentally Illness

I admittedly don’t know what loss and grief are like for most people. I have been battling my mental illnesses my entire life, so I don’t know what it is like to exist without them. Whenever I hear people offering their condolences and reassuring others that it gets easier over time, I can’t help but wonder if that’s actually the truth for some people because I know it is not a universal truth. Things most assuredly don’t ever feel like they get any better for me.

I have struggled with many types of loss throughout my life. Loss of innocence stolen too soon. Loss of safety and security. Loss of home, relationships, friends. Loss of babies who grew inside me but never got to take a first breath. Loss of both my parents a decade ago. And most recently, the loss of both of my emotional support animals. To say I am intimately familiar with the feelings of loss and grief is an understatement.

My depression often leaves me teetering between periods when I am raw and over-emotional, feeling everything too strongly, and periods where I shut down and am numb to the world, unable to process any emotion at all. Because of this, my grief often comes in waves. When there’s a lull in the storm of emotions, I often assume my heart has begun to mend, only to have it tear wide open again as another wave hits. My numbness deceives me into believing the worst is over for days at a time, only to awaken one day feeling raw and overwhelmed once again. And as is often the case with rough seas during a storm, multiple waves often crash seemingly at once, as older pain rides in on the heels of new.

My anxiety makes me question every loss I have experienced and meter out assumed personal accountability for ever heartache I have ever experienced. I over-analyze and criticize myself for things I have convinced myself after the fact that I could have, should have done differently. I find myself worried again and again that my actions or inaction will repeat the patterns of old losses and create new ones. Yet, instead of those fears promoting change, they often spark my fight or flight response, causing me to flee. Or worse yet, I become like a deer frozen in the headlights, terrified that any choice I make, to stay or to go, to act or not act, will ultimately be wrong.

My PTSD has caused me to relive some of the more traumatic losses of my life multiple times over the years. When those moments are triggered again in my memory, it is as if I am reliving those experiences again in real time. Having a flashback of old losses renews and resets the whole trauma for me.

It is not that I am dwelling on the pain and losses of my life. I try to focus on positivity as often as possible. I have a mental wellness toolbox full of techniques and exercises intended to help keep me grounded and centered. I spend time with family and friends, partake in hobbies and activities, and otherwise attempt to distract my mind from the pain I often feel. I thoroughly embrace and practice the art of self-care. I never sit home intentionally focused on those feelings of loss and grief. Yet somehow, those emotions seem to know about every crack in my armor, seem to always find a way back in.

I am not intentionally avoiding facing my grief and loss, either. I have spent many hours over the years talking about my feelings in therapy. I have further processed my emotions many times over by writing about them and the impact they have had on my life. I am not walling myself up, building an unfeeling facade that cracks under the pressure of pain. I have attempted numerous times to process my emotions, to rationalize with myself and heal. But the healing never comes.

I have allowed myself to feel both sorrow and rage. I have forgiven myself and others. I have accepted that I cannot change the past. I have done every single cliched suggestion thrown out there about moving on and letting go.

I want to heal. I don’t want to keep hurting over so much in life. But I honestly don’t know how to shut any of it off. Every time I think it is over, another wave hits or a different wave. It could be a few hours, a few days, sometimes as long as a week. But those waves of grief and loss always manage to find me, old waves and new, compounding on each other and seemingly ever-increasing as my heart develops new cracks.

And the moments are so seemingly random and sporadic that there’s no way to brace for them or adequately prepare.

My fiance and I were binge-watching old seasons of Hell’s Kitchen and came upon an episode where the contestants were preparing a dinner service for a young lady’s sweet sixteen. As quick and as simply as flipping a switch, my entire mood and demeanor shifted. One moment, we were laughing and joking, engrossed in the show. The next, my eyes were welling up with tears. I couldn’t stop thinking about how I never got my sweet sixteen, the sweet sixteen my mother had promised me for years. Three months before my sixteenth birthday, my father walked out on our family and cut all ties. I tried numerous times between that February and my birthday in April to get in touch with him but he always dodged my calls. I called up his work on the day of my birthday, sure that he wouldn’t deny me on that day, only to hear him in the background tell his co-worker “tell her I’m not here”. My sixteenth birthday was the first time I tried to kill myself.

Just like that, every emotion, every feeling of heartbreak and loss came rushing back.

My fiance lost his father to cancer shortly after we got together. The cancer, the hospice, everything triggered the loss of my father again and again. He’s still grieving the loss of both his parents and every time I attempt to comfort him and ease his pain, my own grief for the loss of my own parents renews.

For the last decade, I had two sugar gliders registered through my doctors as emotional support animals. I could take them everywhere with me, which helped immensely with both my depression and anxiety. One passed away roughly three months ago, the other last week. Losing them was like losing part of my heart. I cried inconsolably and went numb in waves, sobbing until my eyes ran dry and my voice went hoarse more than once. I watched the clock with pained precision, unsure what to do with myself each day when feeding time rolled around. I beat myself up horrendously for the fact that they passed at all, as if I could have spared them old age and death by sheer willpower alone. The truth is that they hadn’t been sick at all. They were just old and the time runs out for all of us eventually. Yet I still felt to blame for them not living longer, not living forever. I found myself taking in two sugar glider rescues last night, not because I was over the loss of my Lilo and Stitch or because I assumed they would fill the hole that loss left in my heart, but simply because I desperately needed that distraction. I needed new babies to keep me busy, new babies to love and to care for, a new purpose to keep going. Their adoption was bittersweet, though, because I am still raw from losing my other babies. But at least when feeding time rolls around again, I have something to focus on other than my grief.

An old friend from high school killed himself. The last time I spoke to him was less than a week before he died. Whenever I think of him, I wonder whether he would still be here today if I had said anything differently or called to check on him again. It doesn’t matter that we had grown somewhat apart over the years, living separate lives, and barely talked anymore. We used to be close so I feel responsible because I didn’t maintain that friendship better, didn’t reach out more, didn’t try harder. The rational part of my brain knows that line of thinking is irrational, but a larger part of my brain and my heart just won’t let go of those thoughts.

So many things can set off waves of grief, some large and obvious, others seemingly small and trivial. I’ve found myself sobbing uncontrollably over Hallmark commercials or sights and sounds, songs or movies that reignite memories. Empathizing with the pain of others reignites my own. As simple as that, in a flash, those feelings refresh and the grief is renewed. I can be fine one moment, laughing and joking, and be biting the inside of my cheeks the next in a futile effort to fight back tears.

I know mental illness is a liar and a master manipulator, capable of twisting truths and spinning lies. I know deep down that I am not responsible, directly or indirectly, for many of the losses in my life and that hindsight is 20/20. But my rational side knowing these things does not stop these emotions from flowing or my grief from being felt. And therein lies the problem. I can rationalize all I want but I cannot shut these feelings off.

Perhaps I’m just wired differently. Perhaps I’ve been broken too many times, been cracked to the core so often that I am incapable of fully healing. Perhaps some wounds just never heal. I honestly don’t know. I just feel like I’m in perpetual mourning, eternally haunted by every loss I’ve experienced in my life, whether one at a time or intertwined and flowing as one.

I honestly don’t know if those promises that things will get better is an old wives tale, something people just say when the silence becomes too heavy and they need some words, any words, to cut the tension and the pain in the room. I don’t know if for some people it does actually get better over time. I just know that for me, as someone struggling with mental illness, grief and loss never seem to fully go away.

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.

mightylogoRepublished on The Mighty on 5/4/20.

yahoonews

Republished on Yahoo News on 5/4/20.

 

Love.. When You Both Have A Mental Illness

Everywhere you look nowadays, you see stories about Ariana Grande’s whirlwind romance with Pete Davidson.  And almost everyone seems to want to put in their two cents on the matter, claiming everything from the fact that they’re too young to they’re moving too fast.  So many opinions abound.

More than anything, though, I keep seeing people chiming in about the fact that they both have mental illnesses that they have spoken publicly about, as if their illnesses play a large part in their relationship in some negative way.  Ariana Grande has spoken out about her struggles with anxiety and post-traumatic stress disorder.  Pete Davidson has shared his experiences with borderline personality disorder.  Yes, they both have mental illnesses but they also have found love.  And two people loving each other is not a bad thing.

There are many people that buy into the stigma surrounding mental illness, assuming that everyone struggling with one is crazy, unbalanced or even dangerous.  Some assume that nobody can have a healthy relationship while they have an unhealthy mind and that two mentally ill people coming together is a recipe for disaster.

I once even had a friend tell me specifically that “two unhealthy people cannot have a healthy relationship”.  Based on their premise, because I have a lifelong mental illness diagnosis that has its roots in my genetics, I have no hope of having a healthy relationship, especially if I fall in love with someone else who is struggling with an illness, as well.  If he were to be believed, I was destined to be alone.

As someone who struggles with mental illness who is in a relationship with someone else who is mentally ill, as well, I can tell you from my own personal experience that is not the case.

I have depression, anxiety and PTSD.  He has been diagnosed with bipolar disorder and PTSD.  We have both struggled with our illnesses for years, even being hospitalized for breakdowns at different points in our lives.  Yet, in each other we have found a love unlike anything either of us had ever experienced before.

We knew each other years ago as children.  He was my older brother’s best friend for a time and my first crush.  In our teens, life sent us in different directions and we lost touch for many years.  We found each other again a year and a half ago, after twenty five years apart, and sparks flew.

Like Ariana Grande and Pete Davidson, we’ve had people look at our relationship with judgment because we moved so fast.  He found me online again, listed as a friend of a friend he might know and we reconnected.  For two days, we talked non-stop whenever we had a moment to spare.  On the third day, we arranged to get together in person.  We’ve been together ever since.  As they often say “the rest is history”.

A month and a half later, we found ourselves living together.  We hadn’t planned it that way honestly.  His father had inoperable end-stage cancer and was placed in hospice.  There was no way I was going to leave his side for even a moment and make him endure that alone.  I had lost my own father to cancer a few years earlier, following his own brief stay in hospice.  Going through that together brought us even closer.

All the people from the outside looking in saw were two people who jumped ridiculously fast into a relationship.  They don’t realize that we knew each other as children and had a pre-existing familiarity and closeness that was brought back to the surface again.  The don’t accept that facing hardships together as we had done brings people closer.  They don’t consider that we have physically spent more time together in the last year and a half together than some couples have after dating for years.  They don’t see how we are with each other behind closed doors and how close we’ve continued to grow with each passing day.  Some people come directly from a place of judgment and automatically think it’s irrational to be so serious after such a short time.  Or worse, they label our choices as “crazy”, as if our love was just another way our mental illnesses have presented themselves.

Because of our mental illnesses, we’ve both always felt different, broken, damaged.  We both never felt we quite fit in or that anyone else could truly understand what we’re going through.  We’ve both felt so lost and that life should not be this hard.  We both have struggled for years to stay positive when it felt like our world was spiraling down into a dark abyss.  We both had numerous people in our lives who just couldn’t understand, who told us it was all in our heads, that we just needed to get over it and suck it up.

The difference now is that we both have someone we can talk to about everything we’ve been through.  Someone who truly gets it because they have been there themselves.  Someone who listens without judgment because they understand all too well how much that judgment hurts.  Someone who sees us not as damaged and broken, but for the big hearts and beautiful souls we have inside.

With that level of love and acceptance comes an incredibly strong bond.

We’re able to open up to one another and talk on a level that we never had before, to share experiences and traumas we’ve kept to ourselves for years.  In each other, we’ve found the one person we can completely be ourselves with, say anything to, without fear of rejection.

We both have a portion of our mental illness that is unique to us.  I have a generalized anxiety disorder and he has bipolar disorder.  Though I have not struggled with his disorder myself, my mother had bipolar disorder so I had some experience with his illness, at least from the outside looking in.  We have patiently explained to one another everything the other didn’t understand and offered tips to one another for how to support us when we are struggling.  We listen intently to each other and are supportive to each other because we both know very well how it feels to have nobody there who understands.

The depression side of his disorder I understand all too well.  The manic side not so much, though I had learned early on in life to spot the shifts in my mother because she shared his diagnosis.  When he has a manic episode, I am always there to offer support and encouragement.  He often becomes hyper-focused on one task or another and I intervene to make sure he does not lose himself, putting off self-care and disregarding his basic needs like eating.  On the rare occasion that his mania presents itself as rage, I do my best to deescalate the situation in a non-confrontational way.  No matter how his mania presents itself, I offer a calming presence to soothe him and bring him back down again, often rubbing his back, head and shoulders to help him relax.

When my anxiety makes me think irrationally, he is there to talk me down, to help me see reason.  Following anxiety attacks, when I desperately just need the quiet presence of someone else, he holds me closely without judgment and reassures me everything is okay.

Depression hits us both pretty hard.  In the past, we’ve both dealt with people who never understood and who insisted it was all in our heads.  But we both know the signs.  We can see in each other when our depression is raging strong.  And we are both there for each other how we always wished someone would have been there for us for all those years.  We are gentle, kind and compassionate with each other because we’ve been there ourselves and we understand how hard it can be.

We both are plagued by PTSD, as well.  Nightmares of past trauma are especially hard for us both.  When either of us is battling the demons of our past, the other can see the signs, intervene and offer comfort and support.  When our pasts are haunting us, we can talk openly about it on a level that we never were able to with anyone else.

On days either or both of us are struggling particularly hard, we have learned to lean on each other without judgment.  We each pick up where the other leaves off.  We have developed an ever-shifting balance in our relationship.  On days we both are struggling, we curl up together and lean on each other for comfort.

We cheer each other on for our successes and support each other in our struggles.  We encourage each other to stay strong, to keep fighting and to get the treatment we each need.  Neither one of us judges the other for the ways our illnesses present themselves because we understand all too well and empathize with each other on every level.  We not only offer each other support but we’ve become proactive in each other’s treatment, as well.  We’ve attended doctors appointments with each other and helped bring up concerns the other may not have noticed or may have been too uncomfortable to discuss.  We love and support each other in every way.

Yes, we jumped into a relationship that became serious relatively quickly.  But it was not because our mental illnesses had us thinking irrationally.  In each other, we saw someone who finally understood everything we had been battling our entire lives.  In each other, we found that one person who could accept us completely for who we were, loving us not despite our mental illnesses but because of every single thing, mental illnesses included, that made us who we were.  In each other, we discovered what we had been needing, what we had been missing, our entire lives.  Pure unconditional love.

When you find something like that you don’t question it.  You don’t hold back, think on it or weigh options.  You thank the heavens for placing someone in your life and in your path that makes you finally feel not just that it’s okay to be you but that there’s not a single other person in this world you’d rather be.  You run with it and you love them back completely because life is short.  We have to make the most of it.  And a love like this is too good to pass up.

Yes, we may lean on each other more than others do because of our conditions, but that doesn’t make our relationship unhealthy.  We give each other exactly what we each need.  We might both have mental illnesses, but we both are so much more than our diagnosis.  And now we are both blessed to have found someone who can truly see that.

After all, mental illness is just another medical diagnosis and one that is largely treatable.  The only thing that makes mental illness different from other illnesses is that it presents itself in the brain instead of the body so it’s not as easily visible.  People with different medical conditions live their lives and find love every single day.  Those with a mental illness are no different.  People who have a mental illness are just as worthy and deserving of love as anyone else.

So please don’t judge others, or their relationships, based on the fact that one or both of them have a mental illness.  Don’t let the overwhelming stigma surrounding mental illness turn you into a naysayer that pronounces doom and gloom on two people in love just because they both happen to share a similar medical condition.  Instead, celebrate that, despite the fact that there are millions of people walking this earth, they were able to find that one person who loves them completely for who they are.

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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.

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Anxiety is Often Completely Irrational

Anxiety is often irrational but the fact that it does not always readily make sense does not stop it from rearing its ugly head.

Sometimes all it takes is something going badly once.  Every single time I’m in a similar situation afterwards, my anxiety is heightened and part of me fears that something bad will inevitably occur again.  Other times, I can have something bad occur repeatedly and nothing is ever triggered.  Each new time something bad happens again, I find myself honestly surprised at the outcome.

There’s no rhyme or reason to which will occur.  It is not based on the severity of the bad result.  It is not based on how pivotal the event was to my life.  Though I have struggled for years to understand my anxiety and pinpoint what causes it, I have not been able to discern any common factors to make it easier to predict my anxiety in the future.

A recent example of how my anxiety presents itself occurred a couple weeks ago. While preparing to shave my legs in the shower, I found a tick on my leg just below my kneecap.  Thankfully, he didn’t appear to have been there for long. I was able to get him out fairly quickly and easily.  There have been no rashes or bullseye rings around the site since then to warn of conditions such as Lyme disease.  All in all, I was pretty lucky. The whole situation was resolved quickly and without further or lasting complications.

This was my first experience finding a tick on myself in my lifetime.  It obviously was an isolated occurrence, unlikely to be repeated again any time soon.  I don’t spend a lot of time in wooded areas or anything where I’d be likely to pick up another tick.  Yet every time I have stepped in the shower since then, my anxiety easily goes up two points.

Whenever I step into the shower now my heart starts to race.  Though I begin an inner monologue telling myself that I am just being silly and paranoid, I can feel my chest start to tighten.  I stand under the stream of water, close my eyes and practice my conscious breathing techniques trying to calm myself back down.  I struggle to fight the urge to scour every inch of my skin again and again looking for other ticks.

I know it is irrational.  I know my anxiety in this situation makes no sense.  I know that, logically, I am highly unlikely to find another tick even upon a thorough inspection.  I know it was an isolated incident.  But logic plays no part in how my mind and my body begin to react in these situations.

I don’t even know if my anxiety in this particular situation will fade somewhat over time or if it will continue to grow.  Sometimes my situational anxiety will dull somewhat over the course of time.  Other times, however, it remains consistent or even grows and expands upon itself, merging with other anxieties over time.  Again, I have never been able to find any rhyme, reason or pattern to how my anxiety presents itself.  There’s no way to predict what lies ahead.

All I know is that, thanks to one random, errant tick, I have become increasingly apprehensive about taking my showers over the last couple weeks.  And I know that as much as I try to be rational and reason with myself, I cannot rationalize with my anxiety.  It comes and goes as it pleases, always leaving a mess in its wake.

That has always been one of my biggest issues with explaining my anxiety to other people.  Everyone always attempts to apply logic to the situation to “help me see how ridiculous my anxiety is”.  You cannot rationalize the irrational.

Though sometimes portions of my anxiety will eventually fade over time, I have carried others with me for decades.  A good portion of my anxiety revolves around never truly feeling safe.  In this aspect, it has merged with my PTSD because in my head security equates to safety.  Due in a large part to the abuses of my past, I have noticed that I subconsciously react to my anxiety over not feeling safe in many ways. For example, I always leave my shower curtain somewhat ajar so I can see the pathway directly to the door.  I often find myself jumpy and apprehensive when seated with my back to doorways because I carry within myself an ever-present fear of someone approaching me unaware.  I check locks repeatedly, especially before going to bed, because I cannot  relax, get comfortable or fall asleep if I am even the slightest bit anxious about my safety.

I have not experienced anything in the scope of sexual abuse or physical abuse since I was a child that would warrant such anxiety.  There is no rational explanation for why I need to have a clear view of the door from my shower or why I must watch the pathways to my location like a hawk.  It has been decades since I have had anything happen and I am no longer that little child who cannot fend for herself.  But my body and mind will not accept that reality as fact.  To this day, whenever I am presented with certain situations, my anxiety is automatically heightened.  It doesn’t matter that it is irrational.  It doesn’t matter that I can even clearly see that the situation is irrational and call myself on it.  My mind and body still react as if there is something to fear.

I understand that others mean well when they try to reassure me that there really is nothing to worry about or make comments about my overreacting.  I’m aware of that fact myself.  But they might as well be telling me the sky is blue because I can see that, as well, yet I have as little control over that as I do over my anxiety.  There is nothing anyone else could say to me that I have not said to myself a hundred times over.  I know somewhere within myself that it is irrational.  But that does not stop my mind and my body from reacting as if it was the most rational thing in the world.

I don’t need anyone else to tell me that my anxiety is often irrational.  Trust me, I have those bases well covered.  What I need more than anything is compassion and understanding, along with acknowledgement that I am doing my best to use everything I possess in my mental wellness toolbox to soothe myself and bring myself back down out of a panic.  I know my anxiety is often irrational.  Please believe my when I say I am not doing it intentionally to make my own life or anyone else’s harder.  It is a mental illness.  I have virtually no control over how my mind and body react in certain situations.  The last thing I need is judgment or lectures about how I just need to be more rational and calm down.  Because let’s face it – You cannot reason with something that is unreasonable.  You cannot rationalize the irrational.  All the common sense in the world will not negate anxiety.  It is a medical condition.

A Trip to the E.R.: Physical Vs. Mental Ailments

This last week has been yet another stark reminder of how differently people view and react to mental illnesses versus physical ones, especially in medical settings like the emergency room.

Please bear in mind that I am by no means a frequent flyer in the emergency room. The last time I was in the E.R. was about two years ago when I had a large cyst and tissue growth on my left ovary that had twisted and contorted it, causing severe pain. I was in no way crying wolf or looking for attention. My E.R. visit resulted in a surgical referral and the removal of that ovary.

My mother was a hypochondriac. She had doctors for everything and scheduled appointments with specialists on the drop of a dime. Somewhere along the way in my journey to not become her, I became the polar opposite in that aspect. I avoided doctors and only sought medical treatment as a last resort. I once tried to walk off appendicitis for a few hours as bad stomach cramps. On some level, I know it is irrational and that I need to make my health a bigger priority, but I still struggle to go to the doctor unless it is absolutely necessary.

Last week, I had a bit of a scare. I had gotten upset after a spat with my partner and had gone for a walk to calm down and clear my head. Somewhere along the way, though, my head began to hurt and spin. I knew I was upset but the details felt distant and fuzzy, as if the facts were lost in my head somewhere yet I was unable to access them. The harder I tried to root out facts, the more my head spun and the more confused I felt.

While I do struggle often with losing numbers, words or specific facts as a result of my mental illness and have also had memory issues following anxiety attacks and PTSD flashbacks as well, I have never experienced anything like this before. When I realized I could not even recall my own name, it sent me into a panic. I knew something was seriously wrong so went into the first business I saw and asked the clerk to call 911 for help.

An ambulance arrived to take me to the hospital. Their initial fear was a stroke. They started running multiple tests and sent me for a CT scan. As tests began to come back ruling out the prognosis of a stroke, the demeanor of the staff treating me began to change drastically.

Their next possible prognosis was that it was purely a mental issue or that I was lying about the severity of my condition, putting on some sort of act for attention. Despite the fact that I was visibly agitated and distressed at being unable to recall even basic facts, their demeanor changed. All of a sudden, they became outright accusatory and began to question whether I was telling the truth. One nurse went so far as to tell me point blank that they would have to start doing uncomfortable and painful tests, including taking my temperature rectally, putting in a catheter for a clean urine sample (though I had given them one in a cup not twenty minutes prior) or even putting a needle in my back to withdraw fluids for tests “unless I had something I wanted to confess”.

As I laid there in a state of panic not because of the possible upcoming uncomfortable tests but rather because my brain just was not working like it should, I could hear that nurse at the desk nearby laughing with her coworkers about how she was “going to get a rectal thermometer and make me talk”, the results of my CT scan came back.

It turns out that I have two meningioma on my brain, tumors between the surface of my brain and the inside of my skull. The larger of the two is in the falx region, in the front of my head, which deals with memory. The smaller of the two is in the middle, presiding predominantly over balance.

Neither was particularly large thankfully, but when housed in the small space between my brain and skull, even smaller tumors could cause issues. Apparently in my already agitated state following the spat with my partner earlier, there must have been just enough pressure put on the memory portion of my brain to cause a temporary memory loss.

The whole demeanor of the staff treating me shifted once again, becoming very serious and somber. They gave me some sedatives and anti-anxiety medication to calm me and slowly the fog began to clear. They began bringing in paperwork and test results for me to bring to my primary doctor to get a referral for a neurologist, stressing the urgency of the situation. Though they informed me that something like eighty percent of meningiomas are benign, even benign tumors continue to grow and could cause temporary or even lasting damage to my brain if left untreated. Ultimately, I’ll need surgery regardless of whether biopsy results conclude the tumors are benign or malignant.

The whole situation made me nauseous, even beyond the fact that I have tumors on my brain. Just the fact that I was only taken seriously when they feared for a physical condition like a stroke or when the tumors were found on my brain was appalling. As I had mentioned earlier, I have had memory issues related to my mental illness in the past, though thankfully never quite to this extent before. However, following PTSD flashbacks or severe anxiety attacks, my brain is always fuzzy and muddled, as well, and I often have periods of impaired memory afterwards. The fact that professionally trained medical staff at an emergency room would treat any condition they believed had a mental origin less seriously, let alone as a joke, is beyond disgusting to me.

I did not make a scene or call them out on their obviously shifting behavior, in part because the very idea that I had tumors growing on my brain left me in a state of shock. Even more so, like many others struggling with mental illness, I have sadly become accustomed to my mental health not being taken seriously. However, it is deeply disconcerting to me that emergency personnel at a hospital would be so openly cavalier about anyone’s mental health, treating their patients as a joke.

I walked away from this situation with a few distinct feelings and thoughts in my head. First and foremost, I have a newfound anxiety and wariness about going anywhere alone until this is resolved, particularly when upset. I was lucky that I was in an area with easy access to other people and was blessed to have maintained enough reason to know to ask for help. But I carry with me now an ever-present fear that next time I might not be as lucky, especially considering that I regularly operate under conditions of extreme anxiety and depression due to my mental illness.

I also am distinctly aware of all the unknowns in my foreseeable future. I am not sure exactly where I go from here. I understand the basics. Get a neurology referral, get an MRI, get a  biopsy, have surgery, possibly radiation if needed. But I have no idea of the time frames of anything just yet and probably won’t until tests and biopsies start coming back. I don’t deal well with the unknown. Not being able to plan to any degree heightens my anxiety to dangerous levels.

There is a strange sense of underlying optimism, as well. Somehow I know I will get through this, that I’m a tough cookie. I come from strong stock. Both my parents survived multiple types of cancer and other ailments before they passed. My time is not up yet. I have too much left to do. I have a lot of fight left in me.

However, I am very aware of the fear growing inside me, too. Cancer scares me to the core. I remember going to the hospital day after day when my mother had part of her lung removed due to lung cancer, watching her fade in and out in the CCU, not sure whether she would make it or not. I remember reconnecting with my father just in time to watch cancer wreak havoc on his body, going through repeated cycles of surgeries and chemotherapy. His cancer always seemed to be one step ahead, reappearing again and again in different areas until it eventually killed him. I’ve seen cancer eat away at and kill multiple friends over the years, as well. Cancer is, by far, my biggest fear and it is now on my doorstep.

More than anything, though, I came away from this with a harsh reminder of the stigma that still surrounds mental illness, even in medical facilities. When they believed my issue was a mental one, I was a joke they saw fit to threaten with unneeded, uncomfortable and painful tests as a way to get me to “come around”, expecting my condition to magically cure itself and disappear under threats of unpleasantness. It took finding tumors on my brain, something they could physically see, for my condition to finally be taken seriously.

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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.

mightylogoRepublished on The Mighty on 6/11/18.

yahoolife

Republished on Yahoo Lifestyle on 6/11/18.

yahoonews

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.

What it is Like When PTSD Gives You Flashbacks of Abuse

I had a flashback today.  They don’t happen very often, but when they do, they shake me to the core.

It started with an argument at home.  In a moment of anger and frustration as he stormed out of the room, he shoved a floor fan on the other side of the bed, knocking it over.  He hadn’t meant to scare or startle me.  In that brief moment of frustration, he had lashed out without thinking, not even realizing the effect it might have on me.

It was an instant trigger for me.

I know he has never hit me or laid his hands on me in any way and that he would never do such a thing.  I know he isn’t even normally explosive like that.  I know he’d never hurt me nor would he ever intentionally do anything to scare or trigger me. Yet, in that moment, everything I knew flew right out the window.

I was suddenly that 8 year old girl again, that girl that knew when things went flying it was only a matter of moments until the pain began.  I was that little girl again, scrambling off the bed and cowering in the corner of the room in a tight ball, wishing I could shrink down to nothing and fade away.  I was that girl again, panicked because my arms were too tiny to shield myself, that I didn’t have enough arms to block the whirlwind of hits and kicks I knew was inevitably coming.

I don’t know if my flashbacks are the same as other people’s because I wouldn’t dream to even ask anyone else with PTSD how their attacks play out.  I do know, though, that my mind works differently than many people’s.  You see, among other issues, I have a condition called aphantasia.  In simplest terms, I cannot visualize.  When most people are told to imagine an apple, they can create an image of an apple in their mind.  Though I know what an apple is and can list all types of factual things about an apple, I cannot form an image of one in my mind.  The same goes with memories.  I can list all types of facts about an occasion but I cannot create an image of it from memory.

Because of that fact, my flashbacks do not have images from my past.  My body, however, remembers other things.  I’ve always considered it a type of muscle memory of sorts, triggered by my PTSD.  My mind has retained how those blows felt raining down again and again so when I am pulled back into my past for a flashback, it is those sensations and memories and not visualizations that I experience again.

As I lay curled up in a ball in the corner, I swear I could feel that barrage of swings and kicks as if they were happening right that moment.  My ribs ached from blows delivered back when I was a child.  I struggled to catch my breath as the wind I breathed decades ago felt knocked out of me again.  I felt I needed to protect myself, shield my head and my body, bracing myself for damage long healed.  I could feel bruises blossoming on my skin as a far off voice that felt disconnected and not my own pleaded to not be hurt, cried for it to stop, begged to be left alone. I was trapped in that moment, reliving the abuse of my childhood.

I was vaguely aware of his presence and of disjointed words being said that seemed to disperse before they ever reached my ears.  Though some small part of me recognized his presence, he felt no more real at that moment than I did.  The only thing that felt real was that scared little child who desperately wanted to protect herself from any more hurt.

It felt very akin in a way to the sunken place described in that movie Get Out, where a part of myself was watching and witnessing from afar, though disconnected and unable to do a thing.  I felt trapped in the past, cemented into a nightmare from my childhood, lost within my own head.

A small fragment of my consciousness wanted to scream that this isn’t real, to force myself awake and claw my way back to reality.  But it felt so real.  It was like I was trapped drowning in a memory, unable to catch my own breath.

After what felt like an eternity, I was slowly able to wrestle my way back to myself.  I sat there in the corner, shaking and sobbing, rubbing and squeezing my arms and legs, trying to convince myself that I was myself again, back in the present.  I kept reminding myself it was over, I was safe, that none of that had really just happened.  But it felt so real.  My ribs still ached as if blows had recently landed and my limbs all still stung as if they were bruised.

I sat on the floor, shaking and crying for almost an hour, searching deep within for the strength to even pull myself up off the floor and onto the bed.  I was mentally, emotionally and physically exhausted from my journey back in time.  I felt like I was freezing.  My teeth chattered whenever I tried to close my mouth, though it was not from the cold.  I was shaken to the core by the whole experience.

I eventually eased myself back up onto the bed and pulled the covers protectively around myself though they did nothing to stop the chill that went down to my bones or to quiet the sobs that still wracked my body.  He held me, doing his best to comfort and soothe me, apologizing again and again for ever even getting upset, pleading for me to talk to him, to let him know I was okay.  It was the first flashback episode of mine that he had witnessed and it scared and shook him to the core as much as it had me.

I laid here in bed, thinking about how badly I needed to share this experience, to try and explain what it was like while it was still fresh in my mind.  I wanted to explain the fear and the terror before the inevitable numbness set in and I shut down in order to recover and recuperate.  I know I didn’t truly go back in time, but I felt just like that little girl again, experiencing one of the many beatings I had endured all over again as if it was happening right in that moment.

I had a PTSD flashback today.

It may have been all in my mind, but it felt devastatingly real to me.

mamamia

Republished on MamaMia on 4/14/18.

mightylogoRepublished on The Mighty on 4/18/18.

Stop Blaming the Entire Mental Health Community Whenever a Senseless Tragedy Happens

Mass shootings are commonplace in the United States these days.  One community has barely had a chance to mourn and bury their dead before another incident appears somewhere else on the map.  After the school shooting yesterday, a jaw-dropping statistic began to appear across the internet: In the U.S., there has been a gun incident at a school every 60 hours so far in 2018.  That is one every two and a half days.

Everyone is so quick to point fingers and lay blame.  One of the biggest scapegoats is the mentally ill.  Mental illness has become a dirty word.

When someone does something senseless and tragic, one of the first things you hear is that it wouldn’t have happened if not for better mental health treatment.  When there is a shooting, people question how someone who was mentally ill had access to guns.  When someone drives a vehicle into a crowded area or a parent kills their children, people question why someone who was that mentally ill was even allowed out on the street.  People clamor for more laws restricting the rights of the mentally ill for the protection of communities at large.  Politicians respond by shouting promises that there will be change in lieu of this mental health epidemic.

As someone who has struggled with mental illness my entire life, what I see are torches and pitchforks, what I am hearing is one step away from “lock all the crazies up for the safety of everyone else!”  It is a slippery slope.

Please know that I am in no way disputing that those people who commit senseless atrocities like mass shootings have severe mental issues and are desperately in need of help.  What I am saying is that mental illness exists on a broad spectrum.  Mental illness is  term to describe a wide variety of conditions that originate in the brain.  The scope of mental illness extends from diseases of the brain to diseases of the mind. Also, please know that there is a distinct difference between the majority of mental illnesses and the behavior disorders that sociopaths and psychopaths fall into.

Everyone suffering from a mental illness is not the same.  The Diagnostic and Statistical manual, or DSM, is published by the American Psychiatric Association and is used to diagnose mental illnesses.  The current APA list has around 400 different diagnosis, covering a wide range of mental, emotional or behavioral disorders.*

Yes, there are people that are mentally ill that are violent and commit unspeakable acts.  It might even be fair to say that someone has to have something wrong in their head to even be able to carry out anything as heinous as a mass shooting.  But the majority of people who have been diagnosed with a mental illness are non-violent.

According to recent statistics from the National Alliance on Mental Illness, or NAMI**, 18.5% of adults in the United States, over 43 million people, experience mental illness every year.  If a mental illness diagnosis alone was enough to determine a person was dangerous and likely to commit violent acts, with 43 million people suffering from mental illness every year, the numbers of violent crimes would be astronomical.

With millions of people in prisons across the United States and over a million more being sentenced each year to incarceration***, you would assume that prisons would be a hotbed of mental illness.  However, again according to NAMI statistics**, only 24%, not even one quarter of inmates, have had any recent mental health diagnosis.

The fact is that a recent study published in the American Journal of  Public Health shows that a person with mental illness is far more likely to be a victim of violence than the perpetrator****.  Based on this study’s statistics, almost one-third of adults who have been diagnosed with mental illness had been victimized in some way during the previous 6 month period, with over 40% being victimized multiple times.  Of the 23% of mentally ill persons in the study who had committed any sort of violent act in the previous 6 months, roughly 2/3 of the violence had occurred in a home or other residential setting.  A meager 2.6% of violence occurred outside the home in a school or workplace environment.  The most startling fact to come to light in this study, however, is that the victims of violence were 11 times more likely to commit violent acts themselves afterwards.

Yes, something has to be done in regards to mental health treatment in the United States.  But it is NOT because the mentally ill population is inherently violent and unsafe to wander the streets unrestricted and unregulated.  Mental illness and the way it is regarded in this country is a societal epidemic.  Those who have been diagnosed with mental illness must deal with constant stigma.  We are ostracized as being crazy and unbalanced, simultaneously a joke to be mocked and a dangerous monster who needs to be locked up for their own safety and the safety of others.  We often hide our diagnosis for fear of judgment or minimize our struggles to reassure others they have nothing to fear or worry about.

The way a mentally ill diagnosis is handled in this country has to change.  We need to be able to speak up, speak out and receive the treatment we need.  Though NAMI statistics show over 43 million people struggle with mental illness each year, only 41% have received treatment for their condition**.  Roughly one-fourth of the disability applications for Social Security list mental illness as their primary impairment.  Though NAMI statistics** show that 9.8 million people annually experience a severe mental illness that drastically impairs their ability to function, statistics from the National Institute of Mental Health show that only roughly 2.7 million people are deemed eligible for SSI or SSDI*****.  As I can attest, anyone who is applying for disability due to mental illness is advised to get a lawyer and to expect to be denied at least once, if not multiple times, regardless of how much documentation you have for your diagnosis.  Though my mental illness is due in large part to a verifiable genetic mutation I was born with, combined with well-documented trauma, I, myself, have been denied multiple times and still am deemed ineligible by government standards.  For years, I have struggled with red tape, jumping through hoop after hoop, hoping to get the help I need, only to hit brick wall after brick wall, having to begin the process all over again.

The lack of adequate treatment for mental illness in this country has grown rampant.  Suicide is currently the 10th highest cause of death in this country, 3rd highest among 10-14 year olds and 2nd highest for 15-24 year olds, according to NAMI statistics**.  Recently, a video of a disoriented mentally ill woman being cast out on the street by a hospital staff has gone viral.  According to the National Coalition for Homelessness, between 20-25% of the homeless population suffers from “a severe form of mental illness”********.  Mental illness is listed as the 3rd highest cause of homelessness.  People are falling through the cracks, wandering the streets untreated, people are dying, our children are dying, and yet nothing is being done.  The lives of the mentally ill are one by one becoming nothing more than statistics.

It should not be so hard to get help in this country.

There are others who are afraid to reach out for help due to government restrictions on the mentally ill.  There is an epidemic of mental illness and substance abuse among our military.  According to the APA, almost one-fourth of our soldiers, up to 24.4%, are struggling with mental illnesses such as PTSD******.  A recent study published in Science Daily from The University at Buffalo observing the mental and physical effects of law enforcement determined that not only was PTSD and depression a substantial issue, but nearly one quarter of police officers admitted to suicidal thoughts, much higher than the 13.5% of the general population*******.  And these are only the statistics of those who have willingly come forward seeking treatment.  Due to the push for politicians to pass laws regulating gun ownership, a mental illness diagnosis could result in losing the right to even own a gun.  How do we encourage our soldiers and police officers to get the help they need when it could mean giving up their livelihood in the process?

I personally know many people who are afraid to have a record on file about their struggles with mental illness.  They are people who hunt for recreation and are legitimately afraid that a diagnosis would take away their 2nd amendment rights and their ability to feed their families.  They are people who fear a diagnosis would negatively impact their career or their ability to advance due to the stigma attached.  They are people who have seen firsthand how poorly the mentally ill are treated in this country and do not want to be labeled as crazy and unbalanced, as well.  So instead, they suffer in silence, without treatment, until something cracks and breaks.

Yes, there is a mental illness epidemic in this country that is leading to horrifically tragic events.  But it is NOT due to people with mental illness having access to guns nor is it due to mentally ill people wandering around free and unfettered.  It is a direct result of society’s treatment, and lack of treatment thereof, of the mentally ill population.  Please take a second again and consider the facts.

Fact: Over 43 million people every single year struggle with mental illness**.

Fact: Only 41% of those with a mental health condition have received medical help for their condition in the last year **.

Fact: One third of people with a mental illness are victimized and abused every six months and those who are victims of abuse are eleven times more likely to commit a violent act themselves****.

We desperately need to change how mental illness is viewed and treated in this country.  The mentally ill population does not need more restrictions and regulations.  We need more access to health care, better support and protections.  We need assurances that it is okay to seek help and guarantees that the millions of us with a mental illness diagnosis will not all become vilified due to the actions of a minute few.

We need the stigma and persecution to end and the help and healing to begin.

That is the only way that things can change.

mightylogoRepublished on The Mighty on 2/20/18.

* AMA literature with the DSM codes for the broad spectrum of mental illnesses can be found at:  https://dsm.psychiatryonline.org/doi/book/10.1176/appi.books.9780890425596

** NAMI’s Mental Health by the Numbers statistics can be found at:  https://www.nami.org/Learn-More/Mental-Health-By-the-Numbers

*** Bureau of Justice Statistics page that provides incarceration numbers can be found at:  https://www.bjs.gov/index.cfm?ty=tp&tid=11

**** Study entitled “Community Violence Perpetration and Victimization Among Adults With Mental Illnesses” can be found at:  http://ajph.aphapublications.org/doi/abs/10.2105/AJPH.2013.301680

***** Statistics from National Institute of Mental Health can be found at:  https://www.nimh.nih.gov/about/directors/thomas-insel/blog/2015/mental-health-awareness-month-by-the-numbers.shtml

****** APA Statistics on Veterans can be found at:  http://www.apa.org/advocacy/military-veterans/mental-health-needs.pdf

*******Study on Law Enforcement done by the University of Buffalo, published by Science Daily can be found at: https://www.sciencedaily.com/releases/2008/09/080926105029.htm

******** The National Coalition for Homelessness report on Homelessness and Mental Illness can be found at:  http://www.nationalhomeless.org/factsheets/Mental_Illness.pdf