My Grief and Loss Is Intertwined With My Mentally Illness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

More than Just a Faceless Number in the Pandemic

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The fact that I am otherwise relatively healthy is irrelevant.

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

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

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

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

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

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

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

I don’t want to die.

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

Republished on The Mighty on 5/4/20.

Republished on Yahoo News on 5/4/20.

 

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.

Republished on The Mighty on 6/17/18.

Republished on Yahoo Lifestyle on 6/17/18.

Republished on Yahoo Finance on 6/17/18.

Republished on Yahoo Sports on 6/17/18.