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.

Four Days on Suicide Watch

Everything had been building up for months, years.

It was not that I didn’t have wonderful things in my life to be grateful for. I had healthy, compassionate, intelligent children that were growing into incredible adults before my eyes; I had reconnected with my first crush ever who has turned out to be the love of my life and we have a wedding to plan; I had finally found my calling as a mental health advocate and had the start of a promising writing career; I finally understood my struggles with my mental illness, having found a clinic that not only helped me to find the answers I needed, but also actually gave me hope for the future. In so many ways, my life was finally looking up.

However, it was overshadowed by a lifetime of struggling. I had been battling my own brain my entire life. And in recent years, the government and my insurance company, as well. It felt like all I ever did anymore was fight everyone, again and again. It seemed never-ending. I was so exhausted from fighting all the time, never getting to catch my breath, never getting a break.

Add to that discovering not one but two meningioma tumors on my brain. I had survived years of abuses that left deep scars that would never fully heal. My fiance and I were facing a possible pending eviction caused directly by the government’s prolonged inaction in my case and direct refusal to comply with a judge’s previous fair hearing decision in my favor.

The straw that broke the camel’s back, however, was the fairly consistent presence of someone toxic in my fiance and my lives under the guise of one of his  childhood friends who was hell-bent on causing problems in our relationship, repeatedly trying to split us up.

To give a little background on the situation, she had known him since she was thirteen and had a crush on him for close to thirty years, bordering on stalkerish. When he was staying with his parents following the end of his marriage, she would intentionally show up hours before he was due home from work and say she would wait in his bedroom for him as an excuse to sleep in his bed. Though they never had any type of a relationship because he never saw her THAT way, for years, she regularly borrowed hats and shirts from him and kept them, much like a girlfriend would normally do. Despite having a crumbling relationship at home she should have been devoting her attention to, she tried repeatedly over the years to supplant herself into my fiance and his family’s lives in any way she could whenever she could, often causing drama in the process.  Though he later forgave her to an extent, she even played a crucial part in the break up of his first marriage.

From the time we got together, she had been trying to cause problems between us and split us up. The first time I met her was a month into our relationship, shortly after his father went into hospice. She pulled me aside and tried to convince me that I had no idea what I had gotten myself into or the mess he was going to be so I should just walk away before I got in over my head. She told me he was mentally unstable, that she knew him well enough to know I could not handle what was in store. She seemed thrown aback when I told her I had known him longer than her and I was in it for the long haul.

When she could see I was not going anywhere, she switched tactics. Over the course of the next year, every single time she came over she would make negative comments about me and my mental illness, lecturing me that I needed to stop being lazy and do something with myself and my life. Whenever my fiance and I would both jump in to defend me and attempt to explain the disability diagnosis my doctors had given me, she would interject that she worked in mental health, too, and she “knew what she was talking about”. She worked in a mental health care adjacent position, as a glorified overnight babysitter at a facility that housed mentally or physically disabled adults, a job you didn’t even need a high school diploma or any certification to get, yet she swore repeatedly that she knew better than all my doctors over the years. She frequently trivialized my mental health writing as a waste of time and criticized everything from the cleanliness of my apartment to my cooking, as if nothing I did even remotely met her standards.

As if the constant attacks were not enough, she also was constantly attempting, albeit admittedly very poorly, to  blatantly flirt with my fiance in front of me. She would try to run her fingers through his hair and insist he let her cut it, to which he would pull away and say I will cut his hair when he needs it done. When he stopped shaving for no shave November and the couple months afterwards, she commented repeatedly that he should shave because he looks so much better clean shaven, that she prefers him that way, even offering to do that for him, as well. She was forever reaching out to touch him, swat at him or rub him with her hand while she talked, trying to take sips out of his drinks like a girlfriend might do and regularly found excuses to lift her shirt or drop her pants in front of him under the pretense of showing off numerous bug bites and bruises. She would often announce wildly inappropriate things that people wouldn’t normally discuss with friends, like she had just shaved her nether regions or talk about having sex, watching porn or masturbation when she came over.

We tolerated much more than we should have because honestly we felt sorry for her. She was always desperate for attention and, according to her, her problems were always ten times worse than everyone else’s.  For example, when we attempted to explain about my doctors finding my brain tumors, she cut us off by saying, “That’s nothing! Did I tell you I had to bring my car back to the shop again?!” as if car problems were somehow worse than brain tumors. She was loud, obnoxious, crass and crude with no concept of respect or boundaries, always saying or doing whatever she could think of to get all eyes on her. She was always talking badly about someone when she came over, usually my fiance’s ex-wife, even though she was supposedly still good friends with her, to the point where we began watching everything we said around her to avoid becoming part of her gossip. She also had severe substance abuse issues. In a year and a half of seeing her once to twice a week on average, I never once saw her even remotely sober regardless of the time of day – she was always drunk, high or both. We knew from everything she had talked about that things were bad for her at home, that her relationship was in shambles.  A lot of people had written her off already over the years for her behavior but we understood that she had a lot of issues so we tried to cut her some extra slack.

I had tried my best to be kind to her. On more than one occasion, I took the time to show her sons my sugar gliders and explain more about them. I even watched her youngest once for over an hour while she ran an errand. If we had leftovers when she stopped by on her way to work, I would send her with a plate or bowl. She would regularly fill her purse from treats I had put out in snack bowls. I baked her family Christmas cookies and sent her with extra for both home and work. I once even lent her an old pair of pants that were too big on me so she had something clean for work when she stained her own. I listened sympathetically when she complained of relationship issues, health problems or other stresses, trying to extend an olive branch of friendship. I even did my best to overlook her steady barrage of flirtation with my fiance because I realized it must have been hard to see someone you crushed on for decades happily with someone else.

But despite all my attempts at kindness, both her attacks on me and her inappropriate flirtation with my fiance not only continued but steadily increased. What originally may have been one off-handed comment about her believing my disability was nonsense became full-fledged rants. She began making snippy and snide remarks and telling us to stop whenever my fiance and I were affectionate to each other as if she resented anyone else showing him attention or love.  Over time, it had all became too much to bear. When my fiance and I began contemplating marriage, she declared we were not ALLOWED to both get married a second time because she had never even been married a first. When we officially announced our engagement, she responded by referring to me as (please excuse my language) his “fuck buddy”, saying outright that the only thing I did for him was give him my “roast beef curtains” and insist that he deserves better than me. That was the last straw and we agreed she was no longer welcome in our house or our lives.

For two weeks afterwards, she did not come around. Then late one night, well after one in the morning when we were already in bed, we heard a drunken knock at our kitchen window. We both knew exactly who it was because she was the only one we knew with the audacity to think that would be acceptable. I was livid and wanted him to tell her to leave immediately. He wanted to quietly let her in to avoid her making a drunken scene in our apartment building, to wait to tell her she was no longer welcome here another time, during more reasonable hours when she might be somewhat more sober and perhaps slightly more reasonable. Everything quickly escalated.

We were both beyond stressed at the time, not at all with each other but rather with life circumstances in general, topped off by our unwelcome, uninvited guest. Beyond all my own issues, he had been struggling terribly, as well. He had a lifelong battle with his own mental illness. In the last year, he had lost first his father then his job. The family dog that had been his parents’ for well over a decade had to be put down and he was struggling to keep his truck, one of his last physical connections to his deceased parents, on the road and in working order. We were both well beyond our breaking points on many fronts and the culmination of everything with her pushed us right over the edge. We fought terribly, something we don’t often do even in a mild sense.  It may have been the worst fight of our entire relationship. Afterwards, I retreated to the bedroom to cry, locking the door so I could be alone.

I did not have any plans to commit suicide. The thought honestly had not even crossed my mind.  I was not trying to hurt myself in any way. I loved my fiance and my children more than I could ever put into words and would never have wanted to hurt them in any way, either. I was hurt, angry and distraught over our fight, disgusted that we had tolerated someone so blatantly toxic for so long, and I was exhausted and overwhelmed with life in general.  I just wanted to be alone, wanted to try to calm down, to catch my breath, to stop feeling like I was free-falling through a world where I was never allowed to just be happy, never allowed to just rest and be at peace.

I dumped the basket of pills out on the bed and fished out various bottles of my take-as-needed anti-anxiety medications. In between sobs, I took a few. Then I vomited.

Seeing the pills floating there on top, I took a few more to replace the ones I had lost. I continued to sob and to vomit. To vomit and to take more pills to replace the others.

At this point, I was no longer thinking clearly, caught in a nightmarish loop, wanting desperately just to calm down, to stop feeling like this, and to get some much needed rest.

Eventually, sleep came. I started to feel dizzy and thought to myself, “..finally.. they are starting to kick in..”  It is the last thing I remember for almost two days.

I woke up a day and a half later in the hospital. He was seated at my bedside, looking ragged, like he hadn’t slept in days.

Baby! You’re awake! Oh my god I love you. I am so sorry about everything. How are you feeling? What do you remember?

I was confused and disoriented. On oxygen. Had a bunch of tubes and wires all over my body.  It took me a few minutes to realize where I was and what was going on. I could not remember anything since taking the pills, crying and throwing up repeatedly. I was not even sure what day it was.

I can’t believe you don’t remember any of it. I had to kick down the door, to call the police.

My chest hurts.

I can only imagine. One of the cops did a sternum check, pushing really hard on your chest, hoping for a reaction to the pain. You were completely unresponsive.

My throat hurts.

You had tubes down your throat. They had to restrain you for a bit because you started to flail and grab at the tubes. You have no idea how much you scared me baby. What you looked like, laying there hooked up to all those machines, all those wires and tubes. I thought I was going to lose you. Please don’t ever scare me like that ever again.

I wanted to talk about it all, to explain, but my voice was raspy, my throat raw. It hurt to talk. I couldn’t stop coughing. I wanted to insist I hadn’t meant for any of this to happen, to swear I wasn’t suicidal like I had been all those years ago before we were even together. I wanted to apologize for scaring him, for fighting over stupid things like people who were inconsequential and irrelevant. All I could do though was cry as he held me close, my tears flowing freely with his.

I had lost a day and a half.

But more importantly, I tarnished our relationship in a way I can never take back. The sight of me laying there unresponsive, of being carted out on a stretcher, of my laying there as the doctors frantically worked to revive me, will forever haunt his nightmares.

I spent the next day in intensive care as they closely monitored my heart, followed by three days on a secure floor on suicide watch. Again and again, I tried to explain it all to whoever would listen, to insist I was not suicidal.  However, protocol required a few days of observation no matter what was said.

My heart was constantly monitored, my vitals taken every few hours. My IV was moved numerous times as my veins collapsed and fresh bruises appeared up and down my arms. I was stuck in bed for the first couple days upstairs while I waited for nurses to find me clothes other than hospital gowns. The clothes I had arrived in had been cut off me in the emergency room when I arrived. I could not wear other clothes from home until after I was cleared for discharge.

I was not allowed many other items often taken for granted such as a phone charger or silverware. Well-intentioned staff reached out repeatedly to try to convince me life was worth living. Meanwhile, they rushed to confiscate any cans or other sharp items from meal trays and to take endless notes on everything I said and did to assist with my psychological evaluation. I had a constant companion, a nurse or aide to sit with me at all times to prevent me from possibly further harming myself. Though I was never by myself during those four days, I had a lot of time to lay in bed alone and think.

I was not suicidal but I have been in the past. I did not intent to harm myself, but I had in the past. Intentional this time or not, I found myself in the same place and, like my previous attempts in the past, it had not solved anything. On the contrary, it made everything much worse. It hurt the people I love, scared my fiance and my children to death.

I didn’t get any time to calm down, didn’t get that moment of peace I had desired so badly. The majority of the problems had not gone anywhere. I lost a day and a half, woke up in pain and discomfort only to face new problems created by my own actions.

I was extremely lucky just for the fact that I am still here to tell my story. I could have just as easily become a statistic that day. My story could have just as easily ended with my obituary, the words and questions of others left unanswered, adrift in the wind.

I cannot apologize enough for what I put everyone through. I feel stupid, ashamed, that I should have known better. There are no words that could adequately express my remorse. I would do anything to take back that night but there is nothing I could ever say or do that would erase the past.

I would love to say there is no excuse for my actions but when my depression and anxiety reach certain levels, I no longer always think clearly. I become increasingly overwhelmed, the world feels largely hopeless and I am no longer able to cope. Even when I am not actively suicidal, which I have not been for years now, I struggle regularly with suicidal ideation, not exactly wanting to die but no longer wanting to continue living my life the way it is, either. Though I never meant to fall apart like I had that day, unfortunately once I reach a certain point, I react before rationalizing the repercussions of my actions.

I would love to say there is an easy solution to this, that I could take a magic pill or think some happy thoughts and my mental illness would just fade away and disappear. I wish I could say it was a temporary phase even that I would eventually get over. My mental illness is caused in part by a genetic mutation. I was born with it and I will have it until the day I die. There is no cure for me. It is permanently hardwired into my genetics. I can receive therapy for past traumas and current issues, I can take medication to provide my brain with the chemicals my body cannot make itself, I can fill my coping toolbox with techniques and strategies for dealing with harder days and attend things like tai chi and yoga classes until the day I die. Yet I will always have a mental illness. It is a lifelong, permanent diagnosis for me.

Mental illness is my cross to bear. Though I truly appreciate that my loved ones are willing to stand by me and support me through my struggles with my mental health, it is not fair or right for them to suffer like they have for my diagnosis. Although I never intended to do so, I severely hurt everyone that matters to me. They all have tried to be compassionate and understanding, to forgive me for an illness that often wreaks havoc in my life, for a condition frequently beyond my control.

However, I am not sure I will ever be able to forgive myself.

Since getting out of the hospital, my fiance and I have not talked much about the incident beyond him being thankful that I am okay and asking me to please never scare him like that again. I have reassured my children that I am okay, as well, trying to minimalize the severity of it all to lessen their fears. Again, I wish there were some magic words I could say to take away the pain and panic in their eyes. I fear no apology will ever be enough.

It took almost a week before we could even sleep in our bedroom again. While I was in the hospital, he slept on the couch when he could sleep at all, the spilled pill bottles, vomit and towels still sitting where they were when the ambulance carted me away. I insisted on cleaning it up myself when I came home, my mess, my problem, but going into that room felt like crossing into an alternate nightmare dimension. Nevertheless, I fought my way through a bevy of anxiety attacks and breakdowns to clean it all up. Even after everything was cleared away, no trace remaining, we opted to sleep in the living room for the next week on our air mattress. We knew what had happened in there, we had lived through it, yet we were still not quite ready to fully face it.

The first couple nights that we returned to the bedroom, I couldn’t sleep at all. He continued to cling tightly to me all night while he slept, as he had done every single night since we returned home from the hospital, as if he was terrified that I would disappear forever if he let go for even a moment. I laid awake both nights, silently crying for the pain and fear I had placed in his heart. A month later, my anxiety still rises whenever I enter that room, my sleep restless and plagued by nightmares old and new.

I know I need to change many things, to put safeguards in place to prevent something like this from ever happening again. I cannot change the fact that I have a mental illness, but there are other things I can address, precautions I can take. I never want to hurt my loved ones like that ever again. For instance, no more locking myself away when I am upset. No more taking extra dosages of medication early, even if I have thrown up the dose I just took. No more tempting fate when I might be too emotionally irrational to think clearly.

I have a constant pressing need now to reassure him that I am okay, that he doesn’t have to worry. I catch him looking at me, watching me, more frequently now, and checking in on how I am feeling. We are trying to heal from this, to move forward, though I’m not sure we can ever completely move past it. He almost lost me that day. He is always going to worry just a little bit more now.

We have also agreed to remove certain toxic people completely from our lives, those who prefer to add drama and conflict rather than happiness and support. We learned the hard way that some people will take advantage of our kindness and tolerance, repaying us tenfold with cruelty and drama. The nail in the coffin of that childhood friendship was hearing from mutual friends that she had been going around laughing and bragging about “putting me in the hospital”, proud of the part she played in my breakdown. We will never again allow anyone like that into our lives. Whatever it takes to never find ourselves in that situation again.

Some people say that suicide is selfish because all it does is pass the pain onto others. Other people attempt to explain that those who make attempts just don’t want to hurt anymore themselves. Many nowadays recognize that suicide is often a tragic byproduct of mental illness. I have been suicidal. I have been in those moments of desperately wanting the pain to stop. I have had suicidal attempts in my past and now an unintentional attempt because I was upset, irrational and not thinking clearly. I have lost loved ones to suicide, and known others who have lost people they loved deeply, as well, so I understand all too well how devastating it can be from the outside looking in. Regardless of where you fit in the equation, suicide is always heart-wrenching and tragic.

One thing I can tell you, whether you are suicidal or not, whether your attempt is intentional or not, the result is always the same. Pain. Pain for everyone you love, everyone who loves you. Pain for yourself should you survive. And not just physical pain from tubes and tests and IVs. Emotional pain as you see that haunted look in their eyes, that kernel of doubt that appears every time afterwards that you insist you’re okay. Pain that will continue for years, that will likely never go away, whether you’re around to see it or not.

Pain and overwhelming loss for everyone who has ever cared for you. They will never be the same. You might carry physical scars from your attempt, but theirs will run much deeper and never fully heal. Those close to you will retrace all your interactions, looking for signs, real or imaginary, to explain what happened. They will question whether they should have said this or should not have said that. People who you have not seen in ages will question if they should have reached out, as if they could have magically known things were bad and somehow made a difference. They will all blame themselves for your actions and choices. Whether you die or not, they will be forever haunted by that one choice you made, something completely beyond their control. Yet, in their pain, they will embrace that blame, caught in a cycle of imagining every scenario that could have prevented it.

To those contemplating suicide or just on that edge of not being able to cope with life anymore, please know that I understand completely how hard it can feel, especially when you’re struggling with mental illness. You are not alone. But I wouldn’t wish the kind of pain I caused on anyone, not my worst enemy, not my loved ones or yours. Once it has happened, though, you cannot ever take it back. Even if they don’t lose you, your relationships will never be the same. I cannot change the pain I’ve caused, but perhaps, by sharing my story, you can spare your loved ones from the same fate.

Please be careful. Be careful with yourself and be careful with your loved ones. Life is a fragile thing, a light that can be snuffed out in a moment.  It may be hard sometimes, downright unfair. But life is also precious. As is love. Don’t take either for granted.

I know all too well that mental illnesses are rarely rational. When we are upset, we often react based on pure emotion. So take precautions now, during the calm before the next storm. Do not leave ways to harm yourself readily accessible when you might find yourself too emotional to think rationally. Don’t set yourself up to fail or to hurt yourself or those you love.

I thankfully am very lucky to still be sitting here, able to share my story. Many others have tragically lost their battles with mental illness without ever having a chance to tell their tale. Their stories are told in yearly mental health statistics and on memorial pages created by those they left behind.  We’re all in this boat together and we only have two choices. We can either become a statistic or we can keep going, keep fighting, and find some way to make a difference in this world, even if only to show others that it is possible to survive our diagnosis. There are too many mental health statistics and enough pain already in this world. If we have to choose anything, let’s choose life and love.

Much love, compassion, hope and faith that even if this does not find you well, it finds you strong enough to keep living. ❤

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.

mightylogoRepublished on The Mighty on 6/28/18.

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Republished on Yahoo Lifestyle on 6/28/18.

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Republished on Yahoo News – Canada on 6/28/18.

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When You’re Struggling With Mental Illness, A Good Therapist Can Make All The Difference

For years, I struggled with my mental health treatment.  Not only was I considered “treatment resistant” because no medication my doctors prescribed seemed to even touch my illness, but I had become increasingly disillusioned with the therapy aspect, as well.

In theory, I have always believed therapy was a good thing.  Better out than in, as Shrek says.  I believed that people need to be able to talk about the issues in their life so that they did not build up, escalate and cause further issues down the line.

However, my personal experiences with therapy and counseling were disheartening to say the least.

When I was a child, my mother briefly took our family for therapy together.  On the very first appointment, when my brother and I both attempted to speak up and share our perspectives on the situation, we were cut off.  Our “family therapist” informed us that they were the parents, we were the children, that whatever they said goes and that our opinions on the matter were irrelevant.  From that point on in his sessions, I didn’t even bother participating because he made me feel irrelevant, as well.  The whole experience left a horrible taste in my mouth and made it harder for me to trust or open up to therapists from that point on.

As a teenager after my mother shot my father, I was briefly placed in counseling again.  The therapist that time did not seem interested in who I was or how I was feeling.  They simply wanted to know whether I had any plans to try and harm myself or anyone else.  Once they felt reassured that I was not a danger to myself or others, they saw no reason to see me any further.  Again, I was left feeling like I did not matter.

In my twenties, I had my first serious breakdown and my first true glimpse into the mental healthcare system.  I now not only was assigned a therapist but a meds doctor, as well.  I also had doctors that I saw for group therapy sessions.  I had a bonafide mental health team.

My therapist was always watching the clock and would interrupt me each session when we had ten minutes left, telling me to “wrap it up” because our session was almost over.  She chose the direction of our sessions, insisting we always talk about current issues because she didn’t believe I was ready to talk about my past.  I had no control over my own therapy.  I felt irrelevant to the whole process, like I was just going through the motions of getting help and she was only listening because she was being paid to do so.  If I ever needed to contact her in between sessions, I was directed to leave a voice mail, though her mailbox was often too full to leave one.

My meds doctor was equally as bad at listening.  He would prescribe me whatever the current flavor of the month antidepressant might be.  When I would explain that it was not even touching my symptoms, he would continuously up the dosages or add other prescriptions into the mix until the side effects became unbearable and I felt like a walking zombie.  Every time I spoke up explaining that nothing was helping and that I felt worse than before I began taking anything, I was disregarded and told that I had to give the medications time to work.

My “therapy groups” were laughable at best.  Everyone in the groups were told that we were not allowed to talk about anything too personal, nor were we allowed to discuss any topic that might be triggering to anyone else.  What we were left with was a room full of people sitting there uncomfortably, some wanting to cry, others wanting to rage, as we all muttered through gritted teeth that we were fine because none of us felt we were allowed to say anything more.

The mental health clinic I attended also had an impatient wing at an area hospital.  I was admitted there a handful of times over the years.  As bad as their other services were, those stints on the mental health floor of the hospital were the worst.  It always took over a day to get my medications approved so I felt even more unbalanced from the start.  On an average three to seven day stay, I only saw a doctor for ten to fifteen minutes on the day I was admitted and again on the day I was released.  In between, the only option for any sort of therapy were groups.  I was assigned groups with the same rules as my outpatient groups so nothing was ever talked about or resolved.  No one was allowed in their rooms during the day so you had hallways full of clinically depressed people walking endless laps around a secured wing, biding their time until their next mandatory group or meal.  Patients openly sobbed or sat around with numb expressions as if life itself no longer made sense.  Nurses sat in a large locked cubicle in the center of the wing, laughing and talking among themselves and largely disregarding the patients unless they had to intervene with a “behavioral issue” or direct someone somewhere.  There was no real treatment.  It was a corral to hold the mentally ill until the staff could pass them off to be someone else’s problem.

More than once, I stopped going to my treatment over the years.  I felt irrelevant, unheard, unhelped.  It all felt like a complete waste of time.  However, with or without treatment, my mental illness raged on and periodically I found myself having another breakdown and needing treatment again. Unfortunately, there was not a large selection of mental health clinics in the county where I lived, and the others all had long waiting lists, so whenever I needed mental health treatment I was sent back to the same clinic that had already previously let me down.  Over time, I became so disenchanted with the mental healthcare system that I just couldn’t see the point anymore.  I may have had a bonafide mental health treatment team but I walked away without any real treatment for my illness.

A couple years ago, I had yet another severe breakdown, this time thankfully in another county.  With the help of a coordinated care provider, I was able to get an appointment at a clinic that normally had a long waiting list and was not currently taking new patients.  Again, I would be assigned a mental health team.  I wasn’t going to hold my breath, though.  I had been through this process many times before.  My expectations were low.

I have never before been so pleasantly surprised or so grateful to be proven wrong.  The difference was like night and day.

My meds doctor actually listened to my previous experience with different prescriptions and did not try to push a large pile of pills on me.  Instead, he had me take a genetic test to determine what medications would work best for me based on my genetic make up.  Lo and behold, based on the results of this test, over half of the medications previous doctors had placed me on were listed as causing moderate to significant interactions for me.  The genetic test also revealed a genetic mutation I had that greatly contributed to my treatment resistance.  We worked together to create a treatment plan that actually suited me.

All my groups encouraged open dialogue, even if the topic was grief or pain.  My groups laughed together and cried together.  We fought our battles side by side and all felt heard.  This clinic offered a wide variety of groups beyond traditional therapy groups, as well, such as transforming anxiety through art, meditation, tai chi and yoga.  I found myself signing up for every group I could fit into my schedule.  Not only were they treating my mental illness, they were contributing to my mental wellness, as well.

My biggest blessing and godsend at this new clinic was my therapist. She lets me control the flow of our appointments and choose what I feel I need to address each week, never prodding or rejecting the topics I select.  She made allowances with her scheduling so that if we ever went over the session time, she never had to cut me off or make another patient wait.  She understood my struggles with verbalizing sometimes in between appointments and readily agreed to communicate via email or texts because that was what worked best with me.  Whenever I have emailed or texted her, she has responded back in under a day.  Most importantly, she truly listened and cared.

When I was struggling to find housing, she brought in resources and connected me to organizations that might be able to assist me.  She helped me navigate through registering my sugar gliders as emotional support animals.  She took the time to introduce me to others I would be attending groups with so I did not feel so awkward about not knowing anyone there.  When I was on bedrest following surgery, she did sessions over the phone so that I did not have a lapse in treatment.  She has helped and intervened with more than one personal crisis time and again. She regularly went above and beyond in every way imaginable.

Perhaps the grandest gesture she had done was only a couple months into our visits.  My mother had passed away on Thanksgiving day 2010.  In one of our early sessions, I had expressed to her how hard this day still was for me years later.  On Thanksgiving, she took time out of her day and her own family celebrations not once but twice to reach out and call to make sure I was okay.

Again and again, she has shown me that I wasn’t just a patient that mattered during those 50 minutes penciled in on her schedule.  She helped me to feel like I mattered even when I had trouble mattering to myself.  She always made me feel like my mental health was a priority, that I was a priority.  I have never felt more heard.

I honestly feel like I won the therapist lottery.  In under two years time, I have gone from hating therapy and thinking it is a joke to believing it can truly make a difference in someone’s life.  My life.  Everyone’s life.  Whenever I hear anyone talk about needing a therapist, I refer them to my clinic, insisting that even if there is not an opening right away, they are worth the wait.  I often share stories about my experiences with my therapist that end in “what therapist does that?!”.  The only difference is that now my stories come from a place of gratitude instead of disbelief and disgust.

There are wonderful therapists out there.  There are clinics that genuinely want to help their patients heal, who see them as people that are suffering instead of a steady flow of dollar signs in and out the door.  I understand how easy it is to become disillusioned with the mental healthcare system when it feels like you are unheard and irrelevant to your own treatment.  I’ve been there.  I went through a revolving door of sub par and inadequate treatment for years.  But please know that not all clinics and not all doctors are like that.  Some genuinely care about their patients and their well-being.

If you are feeling unheard or untreated, please don’t give up hope.  Don’t stop your treatment because your doctor is not hearing you or is not working in your best interest.  Keep looking.  Find a new doctor.  Your mental health matters.  Don’t settle for clinics that make you feel irrelevant.  Find a place where you feel heard, where you feel like you truly matter.  Find a place that makes you look forward to getting the treatment you need.  Trust me – It can make a world of a difference in your life.

I want to end this piece by taking a moment and thank Mary B. and everyone else at my mental health clinic for making such a dramatic impact on my life.  You are all truly a blessing not only to me but to all those whose lives you have touched.  Thank you sincerely.

Changing My Perspective On My Mental Illness Saved My Life

I have struggled my entire life with mental illness.  Unlike some people whose mental illness has an origin that can be pinpointed to a specific life event, mine is caused in part by a genetic mutation.  It has always been there to varying degrees.  I have always struggled.

Thanks to that same genetic mutation, I have always been considered treatment-resistant, as well.  No medication I ever took seemed to even touch the darkness I carried inside me.  This mutation affected the way the neurotransmitters in my brain worked so I never received the chemicals that I desperately needed, whether made naturally or prescribed,  in any useful amount.

For over forty years of my life, I struggled to function while feeling inherently broken and flawed without ever understanding why.  Discovering the existence of my genetic mutation helped me see my mental illness in a new light and put me on a new path of self-love and acceptance.  There were ways to treat my mutation.  I no longer had to be classified as “treatment resistant” and pushed aside as a hopeless case.  I no longer had to stagnate through life, a broken shell going through the motions while barely existing.

Please know that I am not touting any magical cure for mental illness.  I am also not trying to push that stigma-fueled misconception that if you just try harder, you can somehow vanquish your mental illness by force of will alone.  My mental illness is still very much present and ongoing treatment is still needed.  But the way I have come to view my mental illness has drastically changed and, in many ways, it has been both a world-changer and life-saver for me.

I no longer blame myself for my mental illness.  I used to believe I was damaged and broken, that I was crazy on some core level, unbalanced and just not right in the head.  I had downed gallons of that stigma kool-aid, poisoning myself with the idea that I must just not be trying hard enough, that I was somehow doing this to myself.

I now accept that it is a verifiable illness and one that is largely treatable.  I have accepted that I am no more responsible for my illness than a cancer patient would be for their condition.  It is a medical diagnosis that affects people of all walks of life regardless of their race, religion, gender identity, age or socio-economic status.  I did not ask for my illness nor was it thrust upon me as some punishment or retribution.  People just sometimes get sick and when they do, they need treatment.

For years, I was suicidal on and off.  Because none of my treatment ever seemed to work, my world felt hopeless.  Because I felt damaged and useless, I surrounded myself with people who treated me like I was as worthless as I felt.  Even on my best days, I was only a few steps away from giving up.

Being able to finally accept that I was not responsible for my illness removed all the blame from the equation.  Since I was no longer to blame, I could stop hating myself, stop punishing myself for being so broken.  If it was a medical condition, it was treatable.  And if it was treatable, there was hope.

Hope was a new concept for me.

I was not used to the idea of looking forward to the future.  Previously, I went through the motions of merely existing day by day.  I did not look forward to what tomorrow might bring because it had always brought the same despair as told held and all the days before.  Nothing had ever changed.  But now, there was finally a very real possibility for change.  For the first time, I found myself looking forward to the future.

I also received some semblance of control over my own life.  For years, it felt like my world had been spinning out of control and I had no say in the matter, that I was just along for the ride.  But if there is treatment available that can work, that means I have control over my life again.  Though it might take time to find a balance that works for me, my life and my health are in my hands.  The only way my life will never get better is if I choose to not get treatment.

Regaining control over my own life in turn made me more proactive about my treatment.  I was willing to try anything that might help.  Meditation. Yoga. Tai Chi. Writing.  Art.  Anything that might make a difference and give me a better fighting chance.  It all added new tools to my mental wellness toolbox and made me stronger.

It also made me more open to letting others back into my life.  For years I had isolated myself from many people, believing they were better off without me.  I worried that somehow the mess in my head might spill over into their lives and firmly believed that nobody deserved that.  Being able to see my mental illness as a treatable condition allowed me to take those walls down and let people back in.  I wasn’t dangerous, unbalanced or crazy.  Nobody needed to be protected or shielded from me.  I had a fairly common condition that was treatable.

My new strength also helped me to see that everything my mental illness had been telling me all along was a lie.  I was not weak.  I was not broken beyond repair.  I was not useless, unlovable, unwanted, unworthy.  I was strong.  I was fierce.  I was brave.  I was a fighter, a survivor, a force to be reckoned with.  My future was in my hands.

My new fighting spirit gave birth to an inner advocate that I never knew was within me.  Not only was I fighting for my own mental health, but I began writing advocating for others, as well.  And the more I talked about my own mental illness, the more I let others know they were not alone and encouraged them to never give up, the stronger I got.  Within my illness, I found a purpose, a reason to keep going and to fight that was much larger than my own survival.  The same illness that for years had me pinned on death’s door had breathed new life into me and given me a true calling.

That does not mean that my mental illness is gone.  It is still there raging strong.  The only difference is that now when that inner dialogue begins, I can fight back.  I can call it out for the liar it is.  I can use the tools I have acquired in my mental wellness toolbox and stave off the worst of it.  Instead of succumbing to its cruelty like a lamb being led to slaughter, I now have the will to fight back, to call it out and to refuse to let it beat me.

And I have hope.

I want to get treatment.  Because I have a sincere hope that one day things could be better, that one day my mental illness will not have such a death grip on me.

Having hope has made all the difference.

If you are struggling right now with mental illness, please take my words to heart.  You are not to blame.  You have done nothing wrong.  You are not broken, flawed, or damaged beyond repair. You are not useless, unwanted, unloved, unworthy.  You have a medical condition that could happen to anybody.  There is treatment available.  Things can get better.

And there is hope.

You just have to open yourself up to that possibility.

Trust me.  It will change your world and might just save your life.

You’re stronger than you realize.  You’d have to be strong to fight the monsters you’ve been fighting all along.

You’ve got this.

I have hope for you.  Now all you need is hope for yourself.

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.

mightylogoRepublished on The Mighty on 9/14/18.

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Republished on MSN on 9/14/18.

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Republished on Yahoo on 9/14/18.

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Republished on Yahoo Lifestyle on 9/14/18.

If Only They Understood…

I recently touched base with someone from my distant past. To say it did not go well would be a colossal understatement. While I will not go into specifics about the conversation as a whole, one comment they made has been eating at me. So much so that I found myself at a loss for how to respond.

They told me they had been made aware of my writing but had not read it because they don’t believe in finger pointing.

When I began writing, it was for survival. I had so much baggage I carried with me that it was eating me alive. I was haunted by my past and desperately needed to talk about it before it killed me.

It had nothing to do with pointing fingers or hoping anyone received their comeuppance. The past was the past and nothing I could say or do would ever change it. But I could no longer pretend it didn’t happen, either. I needed to stop running and face my demons.

Even after I shared all I had been through, I continued to write. My second book was entirely about examining my perceptions of people and events, to reevaluate them not through the eyes of an injured child but rather as a rational adult. Again, it had nothing to do with finger pointing. I needed to reevaluate unhealthy and dysfunctional thought processes and patterns in my life if I was to ever have any hope of change.

I can understand their wariness. They knew my mother and witnessed her persecution complex firsthand. My mother, while suffering from often untreated, always undertreated, mental illness, often displayed what those close to her frequently referred to as the “Poor Patty” complex, believing the world was against her.

But I am not my mother.

I am not looking for anyone’s pity. I often tell people not to feel sorry for me. Feel bad for those people who lost their battles. I’m still here. Don’t pity me. Cheer me on. I’m a survivor.

I’m a realist in many ways. I’m not going to minimize what living with mental illness is like, especially not for the comfort of others. It is not pretty by any means. It is dark, ugly, disturbing and scary. Pretending it is less than it is only perpetuates the stigma and reinforces the belief that it should not be taken seriously. The only way we can ever hope to get others to truly understand how debilitating mental illness can be is by talking openly, honestly and frequently about it with no filter, no holds barred.

Part of being a realist, too, is accepting my diagnosis. A large part of my condition is caused by a genetic mutation. I was born with it. I can no more wish away my mental illness than a diabetic could wish away their illness. There are medications I will have to rely on for the rest of my life. I am also fully aware of my limitations currently. Whether those limitations might change in the future with treatment is yet to be seen but lying about or exaggerating my capabilities is only detrimental to myself and my well-being. I will not do it anymore.

That being said, I am also an optimist. I refuse to believe there is no hope. I refuse to accept the stigma surrounding mental illness. While I accept my diagnosis, I refuse to let it define me. I am constantly looking for new tools for my wellness toolbox and am devoted to deciphering and changing dysfunctional thought patterns and behaviors. I may have a mental illness but I still strive to be the healthiest that I can be.

I consider my writing to be both truthful about mental illness yet still uplifting and motivational. I encourage others to not give up, to stay strong and to fight for change. I want others suffering to know that they are not alone and that there is hope. After all, they are survivors, too. They are stronger than they realize. They don’t need pity, either. They need empathy and compassion.

I wish this person could see how wrong they are about my writing and my motivations. I wish they would take the time to read through my work and see that it was never about finger pointing. It was about healing, survival and personal growth, transitioning into advocating for others to stay positive and keep fighting, as well.

But unfortunately though you can lead a horse to water, you cannot make them read.

I hope in time we can talk more and move beyond their misconceptions of my writing and the intentions behind my words. I hate the distance I have allowed to grow between us and hope, in time, things may change. I hope, as well, that they will eventually come to see my writing not as something negative but rather as a sign of strength and a tool for survival.

Because as much as I truly miss having them in my life, I remain thoroughly unapologetic about my writing. Finding my voice has saved my life in more ways than one. Helping others has given me a purpose greater than I ever imagined for myself. Whether they can see it or not, my writing is one of the best things to happen in my life.

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.

mightylogoRepublished on The Mighty on 6/17/18.

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Republished on Yahoo Lifestyle on 6/17/18.

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Republished on Yahoo Sports on 6/17/18.

Something To Think About Before You Consider Killing Yourself..

There are many quotes that resonate strongly with me on a very personal level.  One of my favorites is by William Goldman:

“Life isn’t fair.  It’s just fairer than death, that’s all.”

What makes life more fair?  I believe it is the fact that you still have possibilities and options.  No matter how bleak and hopeless today might feel, there’s no way to know what tomorrow or next week, next month, next year might bring.  Life is fairer than death because death takes away all your options, all your possibilities.

I won’t ever throw out empty promises that tomorrow will be better if you just hang in there because none of us knows exactly what tomorrow may bring and whether it will be good or bad.  But one thing I can guarantee you is that it will bring possibilities.  The possibility of action and of change.  The possibility of a future beyond today.

I would be lying if I said I hadn’t been there myself, if I hadn’t tried myself in the past.  I understand how it feels to feel lost and all alone in the world, to believe that you have no more options.  I know exactly how scary it is up on that ledge.  I know all too well that siren’s call, promising an end to the pain if you just give up, just give in.

Unfortunately, that’s all suicide gives you.  An end.  It doesn’t remove any of the problems that existed.  It just robs you of the ability to do anything to fix them.  And it’s final.  There are no do overs, no second chances, no tomorrows.  It is emptiness.  Nothingness.

Yes there would be no more sadness, heartache or pain.  But there’s no more happiness, either.  You’re robbing yourself of the chance to heal, to overcome, to see better days again.  You’re allowing the worst days in your life to steal the possibility of all future happiness from you.  You’re depriving yourself of a future that is completely within your power to transform into anything you wish.

Giving up means giving up your future and giving up the chance to make your life better.  It is final.  When you give up, there are no more possibilities.

There are also no more hugs.  No more drippy ice cream cones or licks from cute, fuzzy puppies.  No more bad puns that make you chuckle and no more all you can eat taco bars.  No more sunny days or breezes blowing through your hair.  No more singing songs loudly and off key and no more cups of cocoa with too many marshmallows.  There are no more bonfires or camping trips.  No more joyrides with friends or late night pizza runs.  There’s no more movie marathons or teaching your children to ride a bike.

There’s no second chances to fix things and no way to say you’re sorry or make amends.  There’s no new friends or new jobs.  No new children or new pets.  There’s no new hope and no second wind.

There’s nothing.

I could go on and on, listing all the things you could be giving up, but the possibilities are endless.  By choosing to live, you have millions of doors available to open, millions of lives you could live.

There’s only one thing you get from suicide.  Nothing.

I won’t guilt you by saying you should keep living so you don’t hurt others because I believe you should be living for yourself, not someone else.  Don’t get me wrong – it would devastate everyone in your life and change who they are forever but it isn’t fair to ask you to live your life for someone else.  You ultimately need to choose to live for yourself.

But please know that I have been right where you are now.  I was sixteen the first time I tried to kill myself.  I can tell you without a doubt that I am grateful I did not succeed.  I won’t lie to you and tell you that my life has been a bowl of cherries since then, but I still have been blessed beyond anything I ever imagined for myself.

I have wonderful children I would not trade for the world.  I have reconnected with my first childhood crush and found a lasting love.  I am a published author of a handful of books and with blogs that have been republished and shared world-wide.  My life has not been perfect by any means, but it’s a hell of a lot better than the alternative which is nothing.

I know others who have survived suicide attempts, as well.  Years later, we’ve talked about all that has happened since their attempts.  Children.  Marriages.  Careers.  Vacations.  Celebrations.  Memories.  Life.

I have never heard a single one of them say they wish they had been successful.  No matter how many highs and lows they have gone through since then, every single one has been glad they are still here.  I’ve heard stories on television, as well, from people who have survived suicide attempts like jumping off bridges.  They all share the same narrative about regretting that one moment of weakness and being grateful that they did not succeed.

Because you know what they would have had if they had been successful?

Nothing.

“Life isn’t fair.  It’s just fairer than death, that’s all.”

Life is fairer than death because life is full of possibilities.  Death takes every last possibility away.

Don’t keep living for anyone else.  Choose to live for yourself because living means that you still have a chance to be happy, a chance to make amends, a chance to find love, a chance to be a parent or to pursue your dream job.  Keep living because by living, you still have a chance.  With death, you have nothing.

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.

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