Silenced Stories of Our Struggle

 

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There is an unshared story that is told over and over to my tear-stained sheets on so many restless and sleepless nights. It’s a story that I feel others don’t want to hear. A story that is told in angry, broken phrases, and through desperate behaviors that has isolated me, at times, from those I love. This story is multi-layered and complex. There is so much exposition surrounding the plot, that themes go undiscovered and I wind up feeling frustrated, bewildered, and alone.
I’d like to share some of the re-occuring themes in the story of my life. So much of my story is touched by the mental illness I have struggled with for nearly three decades now. My illness does not define me, and yet, it has impacted nearly every area of my life. As with any major disease, mental illness deserves the respect and attention needed to aggressively pursue adequate treatment and support. Often due to it being highly stigmatized and misunderstood, many people dismiss and downplay the struggle. I’m writing to articulate, as best as I can, the untold struggle that surrounds mental illness. The following comes from my personal experiences living with a mental illness.

Common themes relating to my struggle with mental illness:
1. The struggle of identity, Is it the illness or me? Many disorders can cause mood fluctuations and perceptual distortions. When you are younger, you are continually developing your identity and learning about yourself. For those that struggle, you have an additional burden to bear during that process. If you cycle, like me, it can be difficult to separate two competing realities: one when stable and the other when in an episode of depression or mania.

It took me many years to recognize that my illness was not integrated into my identity. Often mania or deep depression derails me and various behaviors surface as a way to cope as effectively as possible. Things were further complicated by others in my life who responded harshly to various behaviors that would surface due to my illness. Because mental illness is often observed through behavior, others will attribute the symptoms of the illness as personality characteristics. How others perceive you is continually mirrored back to you and it can cause you to embrace your symptoms as your personality. It’s safe to say without having a mental illness that continually causes shifts in mood and perception, personality development occurs in a relatively normal fashion absent episodes that can color one’s perception of reality. That is not the case for many who struggle. Often, I have behaved in damaging ways and later realized I was symptomatic at the time. I later asked: “Was that really me?” I have concluded after years of struggling, that the essence of who I am exists absent my illness.

I am responsible for managing my illness as best as I can, but during times of decompensation I wish people would cut me some slack as it is not something I can control. The behavior that is displayed when episodic is not my personality, but a result of the symptoms of my disorder. Just as the expression of my illness is confusing for others, it is equally disorienting for me. There is a lot of unnecessary shame associated with episodically losing control of your perceptions and mood.
2. Dealing with continual lack of validation: When you have a visible illness or disability, people are more empathetic. The problem with having a silent and invisible illness is that people are not able to see the struggle so they downplay it. If there is one thing those suffering understand, it is the lack of others validating and offering support during the tough times you experience with your illness. I often wished that the mentally ill would be cheered on like those with physical disabilities. It would just feel nice to have others recognize how hard it is to accomplish certain things when you are experiencing an episode. It’s comical that some people feel having a mental illness is a ploy for attention or special treatment. Mental illness is still highly stigmatized and no one shops around for a mental health diagnosis to garner attention. It’s not an illness that attracts attention or support from others, in fact, it often pushes people away.  Having a mental illness can be isolating.
3. To disclose or not to disclose, that is the question: Those who suffer with a mental illness, are continually presented with multiple opportunities to disclose or conceal their diagnosis. Most of us struggling are aware that disclosing our illness can bring unfavorable outcomes. People often lack the sensitivity and awareness to handle our disclosure in a positive and supportive manner. Disclosing a mental illness in the workplace can be damaging, although sometimes is necessary to request accommodations during times of decompensation. Even close friends and family will often struggle as to how to support someone suffering during an episode. Those who have never struggled often unintentionally say the wrong thing when trying to be helpful. Holding it in and hiding a diagnosis can be difficult and exhausting as well. The older I get, the more I realize how important it is to surround myself with people that are understanding and supportive. It’s a true act of self-care.
4. Having a mental illness, often means grieving missed opportunities in life. Due to my illness, I decided not to have children. I have also missed opportunities to land promotions or take a better job because I was actively struggling with my illness. I did not feel I could manage the stress of learning and adjusting to a new position at the time. I also feel had I not been sick during my college years, I would have been able to pursue a more competitive field. There have chunks of my life where I lost time and opportunities due to being in the grips of a severe mental illness. Days lost to anxiety and rumination, unable to truly relax and enjoy life. I have spent time grieving what I lost as a result of being so sick. So many times, I have expressed my longing for freedom, security, and safety. My illness has taken a lot of my time and energy. I don’t feel those who do not struggle understand that grief is another layer of having a mental illness. Grief includes bargaining, depression, and anger and the outward expression of these things are sometimes what others are responding to instead of the illness itself. There are layers of frustration, hurt, and disappointment that must be resolved when you live with a severe and persistent mental illness.
5. Living with a mental illness, sometimes means not being able to “let go” or detach from it. I’ve had many heated arguments with friends and family over my inability to “let go” when in an episode. People who do not suffer will often make the mistake of insisting that you can easily turn on or off a mood or perception. I have explained that if that were the case, I would not have the diagnosis of a mental illness. If I could change my state of depression or mania when in an episode that easily, I most definitely would. Remaining in a mood state and obsessing or behaving erratically does absolutely nothing to benefit me. While I’m doing the best I can to manage a chemical imbalance in the brain, I don’t need the additional stress of others demanding me to “stop it” or “let it go”. That approach often escalates an already explosive situation. If I could change course immediately when in choppy waters, I would! There is already so much shame associated with the inability to control certain unwanted thoughts and behavior that receiving criticism during these times only adds fuel to the fire. It’s better to validate and reassure than to scold and abandon. The real space for creating lasting change is done during times of less intensity where coping techniques can be learned. Some disorders do not have a cure and learning to manage the symptoms is the best approach in the end. Enlisting supportive people in your life can sometimes make the greatest difference in your process of recovery.

6. Invalidation and insults abound in media regarding the stigma of mental illness. If you struggle, it’s difficult to not feel bombarded daily by others on social media, television, and surprisingly even in support groups. When you have a mental illness, you start to see all the negative slurs and insults that exists in social media relating to mental illness. Every time there is an episode of gun violence, thousands point their fingers and cast blame on the “mentally ill”, reinforcing the stereotype that the mentally ill are “dangerous, unpredictable, and scary”. This is damaging for many reasons, but one is that it discourages people from wanting to get help because they don’t want to be labeled as “crazy or dangerous”. It paints an inaccurate depiction of mental illness and denies the reality that most of the mentally ill are not dangerous, but are more likely to be a victim instead. Social media,and even support groups for people struggling with Bipolar disorder, are often full of negative remarks that depict people who suffer as “hell to live with, evil, abusive, etc.”. I find many of these comments disheartening and damaging to those living with the disorder. Abuse should never be tolerated, but those who have suffered with abuse would be better off gaining support from a secured site as it is insensitive to those living with the disorder.
I could probably think of more layers that intensify the symptoms of having a mental illness. It is a true struggle that no individual would ever ask for or desire. Often a mental illness will rob you of time, energy, and relationships. It is very devastating in the end.
I wrote this piece to provide a true depiction of the layers surrounding mental illness. I am an advocate for early and aggressive intervention and treatment for those suffering. I believe education and awareness of these issues will help those suffering feel less alienated as people will be more accepting and accommodating if they understand the struggle. I long for the time when the mentally ill are embraced in society and in the workplace. Those who are more severe will also hopefully be invested in and given the opportunity to work and engage in social events if they choose. I will continue to use my voice as a agent of change in a world that is lagging behind on issues concerning the mentally ill. There is a lot of work to be done!

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Here I Am, Standing at the Horizon

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I’m looking out at the horizon. It appears untouched, uncertain, and foreign. I’m feeling a bit frozen. I know I cannot return to what I left as it is in ruins. I’ve seen too much to unsee it and go back. I have a keen awareness that I have finally left and am grappling with a strange, new reality that hasn’t come together yet, nor does it feel familiar in any way. My eyes scan the horizon and my heart if full of doubt and fear. I question my ability to navigate the terrain below.

I guess I’ll just hang here for awhile and stop frantically searching. Perhaps the goal is to give myself the time to grieve what I have lost and to let go of needless investigation of things that are outside of my control. It’s time to bring my focus on what can actually be accomplished today. Too much thought and worry often leads to fear and inaction and very little is accomplished when I am this way. Clinging to constant worry was one of my ineffective coping mechanisms that stemmed from trauma. Worrying has not only rendered itself useless, it has also damaged relationships and caused health problems. I am aware of this now, but have only recently began to acknowledge my ability to disengage from the situations that harm me.

I was hanging on to people and ideas that were not fruitful for me. I’m still processing why I put other people before my own development and health. Obviously, I had something to gain from remaining engaged. It could have been, in part, to avoid my own work and pain. Change is difficult and perhaps it is easier to detach and become engrossed in someone else’s struggle. Being a part of someone else’s healing might of made me feel useful, less unworthy, and visible. I would have felt like I mattered had I been able to help someone.

People were not ready and they were not asking for my help. Their fractured lives left little room for connection in the way I longed for and desired. Its too difficult remaining in a relationship that centers around chaos where I continually worry and fret over everyone’s safety. My voice has become hoarse from screaming for so long. I’m exhausted and I feel silly when I acknowledge that my pleas for lasting change have never really amounted to anything. I think of all the time and energy that I could have been pouring into my life and loving myself. Perhaps, the screaming was actually a plea to connect with and care for myself. I was angry and upset at others who I felt had abandoned me, but in reality, I was the worst offender. I had repeatedly left myself on a mission to help and “save” those who repeatedly declined my help. At least now, I am questioning my behavior honestly and courageously. I’ve been hurt so much that I’m willing to take a harder look at myself.

I am exhausted at the endless attempts to connect to the ones I love. I’ve begged and pleaded for way too long, losing my dignity, winding up devastated and depressed. No one came to embrace me and instead I only ended up completely isolated and alone. And yet, I was unwilling to remain silent. I was also not ready yet to embrace and accept “what is” and to let go of my desire and dream to connect. I would look around and see evidence of others in my life who appeared connected and happy in their families and lives, and I was unwilling to let go of what I felt “should be”. In my hurt and anger, I added fuel to the flames, making an already dismal situation, worse. I was never truly left, because I was never actually connected and together with the ones I loved. I had spent a lifetime trying to connect to people who were either unwilling or unable to join me.

I know that it’s time to leave the hopeless reality that has consumed much of my time and energy. I literally have no idea what I am doing or even what is next. I only know that accepting “what is” and “letting go” of ineffective ways of coping will more than likely open up windows in this musty and stuffy old house. Perhaps, light will flood into the windows and I’ll discover areas of myself that have been neglected and untouched all these years. Maybe the sun will flood in providing warmth and even joy. In time, I might even create a new and familiar space that is all mine that I will call “HOME”.

I hold doubt and hope in my heart at the same time. This space is unfamiliar, but feels somewhat safe. I’m just going to put one foot in front of the other as I learn to listen and trust my own voice. I’ll be grieving, letting go, and learning all at the same time. Most importantly, I hope the manacles that have bound me in the past to places of despair, release and fall heavily to the floor. I’m venturing into the unknown with new intention and resolve and my eyes are open, scanning the horizon.

Crazy Making in America: A Desperate Cry to Change Our Broken System

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It’s broken. It’s shattered. And, it’s literally killing people every single day.

The system that is currently in place for serving individuals who are struggling with a mental illness is fragmented, fractured, and incompetent. I have been a recipient of mental health services for nearly 30 years now and feel that both access to and quality of treatment has gotten worse, not better, over time. I believe many of us want to see change for ourselves and for our loved ones who struggle, and yet, the problem seems overwhelming. Where to begin? Ultimately, the care provided for this population of people needs to be driven by a culture that cultivates sensitivity and demands practices that ensure the preservation of the patient’s dignity. There are many systems that need to work collectively to ensure that patients are treated with respect and in the same manner as one would treat a heart attack or stroke patient. When our culture begins to value the lives of those who are struggling with a mental illness, the potential for change will increase exponentially, not only for the individual, but for the community as well.

I would like to offer some solutions from the consumer’s point of view. I have been hospitalized 4 times in-patient for mania and depression. I have never been committed and have always went voluntarily to the hospital, seeking help for the symptoms I was having at the time. The first two hospitalizations were in the early ’90s and the last two were in the years: 2015 and 2017. The last two experiences were actually much worse, which was surprising to me as I thought the quality of treatment would have improved from the past. It was actually much worse.

Here are some of my personal take aways from my past two inpatient hospital stays. I can tell you that I have needed treatment this past year and did not feel “safe” to go to the hospital.  I feel safer staying out of the hospital with a friend, than ever going into an a psychiatric hospital for crisis-stabilization treatment. Here’s why:

Crisis stabilization is not treatment. It has become basically a “holding tank” where those in crisis are admitted, medicated heavily, and provided some basic coping tools throughout their stay in groups they attend while there. There is little to no therapy or processing and discharges are often not thoughtfully planned or put together. I was discharged from a hospital with no services set up because the social worker refused to help me access services because I had not yet ended the relationship with my current provider who was a referral source for the hospital. The social worker placed a referral source above helping me access more appropriate services that were closer in proximity to me. I felt by going into the hospital for severe depression and suicidal ideation, I would leave with services set up to ensure continuity of care. The social worker of the hospital placed business needs and the relationship with her referral source over my recovery process. I was willing once out of the hospital to contact my provider who was roughly an hour away from where I have recently moved to, but was dismayed when services and new providers could not be set up prior to leaving the hospital to avoid disruption of care. The lack of treatment, evaluation, and discharge planning left me feeling every bit as depressed as when I entered the hospital, but with the resolve to not ever be admitted again.

Another concern is that they put women and men into treatment together, often on the same hall in close proximity. People might feel that this is an acceptable practice considering that they do 15 minutes checks to ensure the safety of the patients. However, my personal experience is that it is a major distraction and often impedes the process of recovery. Often people who are struggling have poor boundaries and are unable to protect themselves. Some patients might be especially vulnerable due to hyper-sexuality, a symptom of mania. I briefly worked at a psych hospital where I learned that two patients were caught having sex together on the unit. This upset me because when someone is manic and unable to execute good judgment, I feel they should be protected from an occurrence like this. If she had become pregnant from this occurrence, it could have become a liability for the hospital. Some female patients might also be struggling with trauma issues and certain male patients, who lack boundaries, may perpetually trigger female patients. Male patients also can be victims of female patients who lack boundaries as well. I was triggered by a male patient rapping violent lyrics while pacing outside my door, using my name within the rap song. I informed the male nurse that it was troubling me and he downplayed my concerns,  stating it is just his mania and rolled his eyes at me. I felt vulnerable and scared when I already was struggling.

Patients are treated like prisoners. I agree that the environment must be kept safe for the patients and the staff. Still yet, there are some instances where this type of treatment becomes detrimental to recovery. Often patients of varying degrees of severity are placed together and the environment is stark and bleak. I can remember a hospital stay where I had brought a coloring book with me to color in to help me cope. I was denied access to my coloring book because it was non-conventional with cuss words in it. It may seem silly to most, but the coloring book represented security to me in an unfamiliar space when I was struggling with severe anxiety and depression. Often, you are stripped of everything you own and do not have access to resources that can provide comfort and lower anxiety.

At one hospital, I was made to wear a uniform initially and it felt demeaning and degrading. At this same hospital, staff were separated from the patients by a wall with glass so they could look out and observe patients. It felt, to me, like I were an animal in the zoo being observed. It also made me feel unsafe as the staff were divided from the patients. I do understand a need for a separate space for staff for the completion of paperwork and what not, but to have staff separated from patients in this way felt dehumanizing. Every move made, even getting a drink of water, had to be granted permission and often you had to prove yourself over time to earn privileges, such as going outside. I have never gone to jail, harmed anyone, or fled treatment, so I felt punished. The experience was frustrating to say the least. Certain staff who were less educated and informed than I am about my illness, were abusive with the power they were granted in these situations. I was overmedicated a few times and was even threatened when I declined to take the medication prescribed because I knew it was too much. There were other patients who expressed they felt overmedicated as well. As a mental health patient, you are aware that others will doubt your credibility regarding your concerns, and this allows for little protection in the way of poor quality of care or mistreatment.

The length of stay is often inadequate for stabilization and longer treatment facilities, such as residential care, are out of reach financially for most patients. Often a patient is discharged at the first signs of stabilization, which is defined as not being a danger to themselves or others. However, most medications can take quite a bit of time to actually demonstrate effectiveness and by the time the patient begins to have side effects or shows the medication to be ineffective, they are already out in the community not being closely monitored. This results in a revolving door for many chronically mentally ill where the protocol is to stabilize, rather than treat the mental illness. My nephew has remained sick for nearly half a decade or more, bouncing in and out of hospitals for brief stays, but never truly having thorough evaluations and treatment. In the past, hospital stays actually included treatment and were longer in duration to ensure that progress and stabilization occurred prior to discharge. The current system is a band-aid approach to care and results in an over-burdened, costly model of care where people do not recover.  Residential care, which is longer in duration and includes intensive treatment, is often denied by most insurance companies, rendering the majority of mentally ill lacking access to what is needed to truly heal and recover.

In addition to the lack of appropriate treatment in inpatient settings, various therapeutic outpatient programs often have long waitlists and/or not covered by Medicaid or other insurance plans a patient may have. I have currently been waiting to begin Dialectical Behavior Therapy (DBT) for over six months now. I have applied for a Health Care Grant to cover the cost of the program and have not heard back yet if I am awarded the grant. I am also stuck waiting in the grueling process of trying to get onto SSDI and SSI benefits. If I had these benefits, I could afford the therapy I need to get well.

Lack of access to effective treatment for the mentally ill is further complicated by discrimination in the workplace and stigma which makes it challenging to maintain employment. To add insult to injury, the struggling individual with a mental illness who loses employment not only will often lose their insurance and providers, but there literally is no safety net for those who fall. Social security programs in the United States can take up to 3 years to be approved and people often end up homeless or with an exacerbation of their illness due to the stress of not having any financial assistance to survive.  Programs such as vocational rehabilitation exists, but often have long waitlists to receive services. It doesn’t pay to have a mental illness in America, one often ends up traumatized by the system with their only sin being that they have an illness they never caused or desired. It is a harsh reality many of us are living with every day, but our concerns are often overlooked and ignored as our credibility is continually in question due to the stigma surrounding our struggle.

I have been advised by therapist and friends not to return to work until I complete the DBT programs which can take up to a year. I may not realistically be able to follow their advice because I am at risk of losing everything if I do not have some type of income. I believe that working will always be difficult for me, but possibly doable if employers could be open to employing and accommodating an individual struggling with a mental illness.  I was doing a good job in the past, but needed a more flexible schedule and to possibly work from home occasionally. I felt what I requested was doable and absent undue hardship on my employer, but I was let go anyhow at my very first accommodations meeting after a medical leave for my illness that my employer had encouraged. It was devastating and caused a relapse.  I was never granted the opportunity to attempt working with accommodations in place. I quickly applied for vocational rehabilitation services through the state, was determined eligible, but placed on a waiting list. That was 8 months ago. It has been 10 months since I applied for SSDI and SSI and I have not received any assistance. Again, there literally is NO safety net for individuals who are struggling with a mental illness and the programs that provide treatment and vocational rehabilitation programs are often waitlisted or unaffordable , rendering them inaccessible to most people.

My goal in writing this is to bring awareness to the issues surrounding recovery for the mentally ill.  Even if you are educated and aware of various programs that provide assistance, access to them is severely limited. I have tried every avenue to get well and have been waitlisted, often with no date in the future to guarantee services. I have been denied financial assistance from SSI and SSDI to meet my basic living needs. Like millions of others waiting, I have to secure an attorney and fight which may take up to two more years. I currently have other un-met medical needs, such as a missing front tooth from an accident when I was 17, where the crown fell out that I cannot address right now because implants are too expensive. I am living with a friend and receiving some help temporarily from my mother, but the assistance I am receiving from friends and family cannot go on indefinitely as it is placing strain on them as well.

Change needs to occur and now to address the crisis surrounding the poor quality of care for people living with a mental illness who become unstable and require help. Here is my short list of suggestions that need immediate action as too many innocent people are experiencing abuse and neglect in our broken healthcare system.

  1. Implement a consumer driven task force in each state composed of individuals who struggle with mental illness and their loved ones to ensure inpatient psych hospitals deliver quality care to their clients. This should be part of the regulations to ensure the voice of those struggling is heard loud and clear.  We are the consumer and must demand better.
  2. States must implement short term disability that is available immediately to ensure patients do not have their care disrupted and they can meet their basic needs to survive. Doing so, will facilitate recovery and programs such as SSI and SSDI will be a last resort.
  3. Recipients of the short term disability program should be required to receive vocational rehabilitation services as well as residential and/or outpatient care to facilitate recovery.
  4. We must invest in early treatment that is aggressive and intensive as early intervention along with vocational training will possibly provide a true path to recovery and less reliance on welfare programs in the future will be achieved as a result.
  5. The Americans with Disabilities Act (ADA) must be revamped to include specific provisions that hold workplaces accountable for ensuring that discriminatory practices do not occur. This will give the Equal Employment Opportunity Commission (EEOC) the “teeth” needed to handle discrimination claims more quickly and aggressively.
  6. Places of employment should be provided education on how to appropriately accommodate individuals suffering with a mental illness in the workplace.

I hope some of my ideas and concerns resonate with some of you who also want to see change. I am passionate about these issues because I have suffered and I know many others who have as well. I hope that I can join others one day to truly make a difference in the lives of those struggling with mental illnesses. I want them to know that they are very worthy of the lives they desire for themselves and to keep moving forward as difficult as it can be on certain days. There are people out there who understand and “see you” and are rooting for change. Together our words will make a difference and I am hopeful one day soon to be engaged actively in endeavors that bring forth change in these arenas.

I Don’t Really Want to Die, But…

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I don’t really want to die, But…

I’ve been fighting a war with my family for too long now. A war to feel believed, seen, valued, and considered. A war to stop the enabling of addiction and dangerous behaviors that are harming the ones I love. A war to get people the help they need so that they can recover and have lives that are peaceful. A war to bring forgiveness and closeness to our family. A war that always ends with me raging into the battlefield, losing my dignity, and feeling like a failure. I don’t want to die, but I don’t want to live fighting this war any longer that I never win, not even one, single battle. And my family isn’t winning either. Those struggling do not have access to quality care or to economic opportunities to empower them. This life, is becoming too heavy.

I don’t really want to die, But…

I’ve been battling a war of mental illness for far to long, with too many barriers to treatment. I continue to fall through the cracks, even though I am educated and an advocate for myself. Treatment has been interrupted over and over again by insurance being dropped when I’ve lost jobs. I’ve been told for nearly a decade now that DBT Therapy is the most effective treatment for my condition, and yet, I have not been able to access it due to costs, waitlists, or loss of insurance coverage. I am currently on a waitlist for DBT and have applied for a grant to afford the cost of the program. I have been advised by my therapist to not work until I go through the treatment which is 6 months to a year. I am likely to fail at work again if I attempt working and then treatment will be disrupted. So I wait anxiously for an answer on the funding and for my turn to come up on the waitlist so I can finally get help.

As a mental health patient, I have experienced poor treatment where I waited 36 hours to be admitted only to be forced to leave treatment the next day when I was not ready to go. I have been treated poorly in the ER and have had symptoms ignored while practitioners made inappropriate comments about my mental health status. Due to not having stability at work, I have lost insurance coverage that has inevitably disrupted care and continuity with providers and as a result I haven’t gotten the treatment needed to truly succeed at work. It is a vicious cycle that has nearly destroyed my confidence and health.

I don’t really want to die, But… 

I’ve been waging a war for years against employment discrimination that has left me unemployed and devastated. After experiencing discrimination at several workplaces when I requested accommodations for my mental illness, I have decided to throw the towel in for now. It’s not only physically and mentally draining to work with a mental illness, but it is traumatizing when individuals treat you unjustly after having disclosed significant private information about a highly stigmatized illness. I have repeatedly, in good faith, handed over my personal health information that was requested to put accommodations in place and each time it backfired. I left each job feeling more and more vulnerable and without a recommendation for employment from my supervisor. My faith was completely shaken when one of my last employers, a state agency that provides services for individuals with disabilities, actually denied me access to employment, firing me after a medical leave at my very first accommodations meeting. I was devastated. Again, it is hard enough to work through panic attacks, severe depression and anxiety, mania, etc. without the additional stress of discriminatory practices.

My quality of work was never in question at any job I held, it was the symptoms of my illness that caused concern and employers were unwilling to accommodate me. As a result, my right to work has been denied. Treatment for my illness has been interrupted over and over again due to loss of medical coverage and having to move to avoid homelessness. This has caused numerous relapses of depression and anxiety. I have even developed PTSD from losing jobs, experiencing nightmares and severe panic attacks when starting a new position. It’s been a long and difficult struggle that most dismiss because they lack awareness and understanding of what it is like to live with a mental illness.

I don’t really want to die, But… 

I am fighting a war to meet my basics needs while government programs like SSDI and SSI  reinforce to me that I am insignificant and unworthy. In the midst of severe stress and anxiety where I am having to rely on others to help me with housing and my car payment, SSDI and SSI are hanging up on me, lying to me, and blaming me for mistakes hey have made in processing my appeal for my disability benefits. They lost my paperwork of 95 pages, joked about shredding it, and once it was resubmitted at their request, did not use it in deciding my case. And even though it was not my error, they have refused to redo it.

I have been researching reviews of these programs and their behavior is common. Apparently, these agencies likes to torment those who are already on the edge. Listen up America, we pay into a system that isn’t there for us when we one day may become disabled and need the help. The process is beyond grueling and torturous,  especially since I would much rather work if only I could!! I am living with my ex-spouse out of need, am having my parents help with my car payment, am visiting the food bank, receiving food stamps and a cash benefit of $197 monthly from an Aging, Blind, and Disabled program. I’ve been deemed eligible for Vocational Rehabilitation, but I have been waitlisted for these programs as well.  Guess what America?  You can be doing everything right: trying to get treatment, trying to get training, etc. and it simply isn’t accessible in our country!!

I don’t really want to die, But…

I in a constant monthly war with my hormones that wreak havoc on my physical, mental, and emotional well-being. I have been struggling for years with Pre-menstrual Dysphoric Disorder. I have literally sobbed in doctor offices and have explained over and over that each month for 3-4 days I am suicidal and feel like hell.  I often want to go to the ER because my whole body hurts and the anxiety is un-paralled.  No one seems to understand my sense of urgency or how bad I feel. It has destroyed jobs and relationships. And, is literally a hell of sorts every single month. I found out recently 15% of people who suffer with PMDD attempt suicide. I feel somewhat validated that I am not alone, but still no one is helping me and I am often dismissed and invalidated.

 I don’t really want to die, But…

I grieving the loss from a war I waged for nearly a decade with a Narc where dreams were dashed and faith destroyed. I was abused physically and emotionally and wish I would have had the self esteem to leave earlier. The relationship helped to carve out my self esteem, setting the stage for self love. I grieve the loss of time, loss of family I could have formed, and potentially the opportunity to have children. While others post pictures of their beautiful children on FB and social media, I’m reminded continually of a few bad choices I made which not only robbed me of potentially a family, but also nearly destroyed my trust in men and in myself. I am fearful to start over again and I’m getting older. I am not completely hopeless, but it is a hurdle to overcome.

And so, I really don’t want to die. I was serious about that. I want to live. And, I actually want to GIVE even though I have little at the moment. I still have dreams to make this world a better place despite the struggles listed above. I want to help others realize their dreams. I’m writing to bring awareness of the system failures that we have in this country from incompetence to discriminatory practices that are “breaking people”. We simply must help and love one another. We must do this for each other, You and I. Post this message if you like and share it. I earnestly want to hear other people’s stories of struggle as I know many are struggling in a system that is preventing people from recovering. The systems need to change and people need to turn towards one another, not away. I don’t have all the answers, I do have ideas…. and I have love. Love is what is needed to turn things around.  Spread it… every single day. 

“We shall overcome”

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Trauma, Addiction, and The Cage

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It’s a paradox of sorts, clinging to addiction to feel so alive, when, in reality, it’s bringing you so much closer to death. And still, you continue to cling to the chaos, relentlessly pursuing the false narrative that somehow you’re safer when high, distracted and disconnected to the misery weighing you down. These endeavors always leave you feeling alone and helpless, constantly craving a manufactured bliss, forever held captive by the entity you feel “sets you free”. An all or nothing approach renders you trapped as relapse is inevitable followed by binges and despair. This cycle is familiar to so many, even those foreign to substance abuse. Addiction wears many hats, is delivered in a variety of packages, yet yields the same emotions of despair, isolation, guilt, and helplessness.   

This cycle of highs and lows becomes interrupted, at times, giving the opportunity to peer through the curtains, pierced by the light that comes flooding in, bringing in too much visibility of the gaping scars and bruises that cover your war torn frame. Wincing, you’ll hastily pull the curtains shut…. But, wait, not so fast. The light and the stillness that surrounds you is exactly what is needed to heal. Truthfully, the sun feels good.  Maybe it is time to bask in it and marvel that you still exist despite the bruises and scars. And, seeing them in the light may make us realize how strong we actually are.  If you are sitting there in the stillness and silence with the sun warming your skin, you have survived thus far.  It will be the stillness that saves you.  When you quit running and sit in the light and warmth, it’s easy to see that the war has always been with yourself. It’s time to turn towards yourself, accept reality completely, and sit with the pain. Sitting with the pain now, will protect you from suffering needlessly. 

I have been fortunate to never struggle with substance use, but I have struggled with addiction. I struggle with gambling and have lost a lot of money and time sitting at slot machines. I currently manage my addiction by self-banning at the casinos that are closest to me so I rarely gamble. Even so, I think of gambling often as a way to escape and distract myself from emotional pain.

My sister and some of her adult children have suffered with severe and persistent addiction issues for several years now. It has affected our whole family and relationships are strained as a result. As the one who has continually confronted and questioned, I’ve been alienated and scapegoated. I am unable to trust those in my family and feel discredited, dismissed, and ignored. I feel I have attempted reconciliation many times, but it’s always during times when there is need for my help and during a crisis. When it is quiet, no one is reaching out to repair or to connect. I have been hurt and even suicidal, at times. But, I am healing and want to stop the continual bleed and learn how to communicate effectively and safely. I often get ugly and abusive by raging and have ended up losing my dignity many times. I’m ready to let go and be free.

The damage that has been done on both sides is too great to reconcile. I personally don’t want to continue risking my emotional health for people who actually feel that my goal has been to have my sister’s grandson taken from the home and potentially placed in foster care. My goal was actually to help those in the home that were using to get help if they would accept it. My goal was to encourage the mother of the child to get her GED and work so that she could actually provide for the child. Currently, she is 20 and doesn’t even have a driver’s license. My goal was to help her eldest daughter get the treatment she needs for both a mental illness and an addiction that has been a factor in recent incarcerations and violent behaviors that have occurred in the home. My goal has always been to help facilitate the healing process so that people can connect in healthy ways and live a life that is full and peaceful.

I longed for the people in my life to recover and to take back their lives. Selfishly, I longed for the connection I had with them before we all lost ourselves in the fire that consumed much of our interactions and occupations. I have missed my family greatly. After years of fighting, I was struck one day recently, by realizing that what I was grieving was not the loss of my family to addiction, but the loss of never having had a close family in the first place.

Memories of abandonment as a young child flooded me and I winced in pain, tears flooded down my cheeks. In an instant, I became aware that I had been holding on to a fantasy of closeness and protection that never truly existed for me. Sadly, I feel it didn’t exist in the generation before me either. My spirit was longing for a space that wasn’t often occupied by others in my family. Love was present, but displayed in sometimes ineffective endeavors which were overshadowed by addictions and other mindless preoccupations that served to provide distance from anything too emotionally charged or intense. I held the intensity of the family and was a constant source of confrontation, always demanding connection and change. However, I was always losing connection, moving farther away from the target I had aimed towards.

The process of confrontation has never been productive. Instead it has often revealed the old, archaic habits and fears that get recycled over and over again. This brutally painful process left me grappling with my grief, completely unraveled and confused.

I was left alone a lot when I was a young child. I was fearful of my step-father as he was often explosive and unpredictable. My Mom worked and my older sister was rarely at home as she was out with friends socializing. I can recall having nightmares and feeling abandoned and afraid much of the time. My sister would come home and stir up problems as she was very rebellious and she would constantly “butt heads” with my step-father. I remember her threatening to run away one afternoon after a heated argument with Dad. I sat there on her bed watching in shock and disbelief as she packed her things. My heart sunk and I was paralyzed in fear, feeling panicked and abandoned. Things felt chaotic and out of control, and I did not feel close enough to anyone to feel protected and safe.

A lot of these past feelings continue to play out again and again as I hopelessly watch the chaos resulting from years of drug use in my sister’s home. I’m not certain if there is current drug use or not, but there has been recent assaults and an incarceration. It’s impacted relationships and has significantly diminished the potential that exists in each of her now adult children who all struggle in various ways. I believe my desire and intensity to help my family stems not only from love and concern, but also from my own feelings of not being protected in times of crisis. The intensity is higher because of my own feelings of abandonment and fear. Their situation in many ways is dire and in need of intervention and yet the constant refusal to work with me and professionals to truly get help has left me feeling perpetually victimized. I’ve finally recognized the unhealthy pattern and am eager to disengage from a hopeless relationship where my needs are continually not met, in order to process the grief of never really having had a close-knit family. It’s going to be ok, because in my stillness, I have discovered the root of so much that I have been struggling with for years.

This feeling of abandonment that has driven so much of my impulsive and destructive behaviors has finally been uncovered. I understand now where it stems from and can work to give myself the protection needed to finally feel safe and ok. And, I can grieve the loss while rebuilding in love. I also will be disengaging with people and situations that re-traumatize me. I love all of my family members and I can recognize that they are all struggling in their own ways. I also know that I have, at times, added to their struggle and have hurt them. Still yet, I am convinced now that disengaging and grieving, while processing the past, is the only way to move forward in a peaceful and healthy manner.

I had to let go of certain people in my life to clearly see why engaging was so damaging and invalidating for me. Trauma results in so many ineffective ways of coping, involving habits and addictions that can be extremely destructive. These negative ways of thinking can trap you, keeping you continually preoccupied with picking up the pieces that fall as a result of employing them. I’m going to one day be completely free from the cage that has confined me and the ineffective coping mechanisms that has kept me trapped.

I would guess nearly all addictions and negative coping mechanisms result from some deeper pain within you that feels too difficult to process. The light that floods in and the stillness that surrounds you is a gift of discovery if you are willing to do the difficult emotional work. The freedom you will feel from letting go is the purest form of joy that I have ever tasted. It leaves me feeling peacefully connected to myself. That is the greatest gift I’ve ever received. It cost absolutely nothing and is pure, its benefit, endless.  Peace and light to all. Wishing you light along the journey toward wholeness.

I Will Rise, I Will Love

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I am again in the midst of leaving and letting go. This act of self-love has left me captivated in thought.  Much of what I was clinging to throughout the years and wearing in heavy layers, is shedding, leaving me unraveled, naked, and new. I would have never guessed that the process of healing would leave me in a space of solitude, and yet somehow embracing it. It’s strangely odd and yet liberating at the same time.

I have often wondered if those in my life have realized that this imperfect process of anger, and even rage, is my voice growing in relevance and determination. I believe it to be lost on most of them in their continual defenses of behavior that has been damaging to me and others that I love. People become trapped by their own trauma and are often unaware that their behaviors and words communicate strongly that they do not believe you, hear you, or value you. People forget that action is truly the only litmus test for revealing someone’s true beliefs and intentions. And often, people do not act.

I spent a lifetime living in fear, paralyzed by the unpredictability of an adult who lived in the home who exploded often in anger and rage. I was only a child and was unable to escape from the situation. I recall living in a hyper-vigilant state, unable to breathe, always on guard. My small voice wavered as I reached out with courage to 2 adults in my life. I was quickly invalidated and told in so many words not to trust my own instincts and perception of reality. All of me wanted to be out of this situation and be safe. Years later, I was again invalidated by people refusing to accept accountability, and instead offering excuses that these erratic and explosive acts that I endured as a child, were never witnessed, but occurred when they were away from the home. There was an apology issued, but they didn’t express complete accountability, dismissing themselves from addressing the behaviors at the time because they weren’t really there to see them. Again, an indicator that perhaps what I experienced was fabricated somehow or less serious.

And so, I remained vigilant and ever ready to protect myself as best as possible and I often disassociated as a result. I remember times during these explosive situations that I disappeared. I recall the beginning of the event and the individual reaching to shake me, and then I recall nothing. I had faded into empty spaces, protecting myself from the assault, not only physically, but spiritually as well. I was broken and silenced as a result and did not feel protected or safe. This communicated to me on a deep level that I was not worthy to be protected by the adults in my life.

As a result of the ongoing tense and uncertain environment, I grew paranoid, depressed, and fearful. It has had a lasting impact on my life. For years, I felt expressing anger would kill me and even now when angry I feel unable to breathe. As I write now, I am severely anxious and tearful. My expression of anger now comes at a high cost. It is often explosive and leaves me feeling exhausted and anxious. I am still learning how to safely express it.

Years have passed with mental health diagnoses and medications and I’m still searching for the part of me that disappeared. I fight tooth and nail with family members regarding an addiction that has fostered loose boundaries and trauma of another sort. Deep neglect has not only destroyed the potential found in early adulthood of those I dearly love, but it’s limited their ability to have boundaries. It’s crippled their confidence to execute independently and as a result some do not have an education or a job. When asked, they are unable to articulate goals for themselves and are often absorbed in desperate activities to numb the pain stemming from their trauma. Restless and unable to often act, they engage with others who are on the same destructive path.

I often see the same patterns of enabling destructive behaviors and an throwing money at the situation which does nothing to address the underlying issues that are perpetuating the devastation. I see some of them being invalidated much like I was as a child, their voices downed out by the guilt of those not awake enough to accept accountability and truly address the trauma they endured as children. Adults in their lives that have kept them bound to inaction with behaviors of enabling and their own addictions, whether it be food, drugs, gambling, sex, etc. I do sporadically see efforts to remedy things, but these efforts are often coupled with enabling. I recognize the complexity of things, still yet, people turn away from each other, instead of towards each other in accountability and compromise. The guilt and shame associated with their mistakes impedes healthy patterns of reinforcing consequences and having expectations. This may eliminate some of the guilt, but does little to address the root problem which is the only way to truly heal and recover. The cycle continues. And not only is it heart breaking to watch, it has prevented me from connecting to my family in a normal and healthy way. It’s too hard for me to watch the pain and not address it.

I have fought alone for the past few years with no one really joining in and I’m exhausted. I recognize my own mistake of staying engaged and working harder than those who are struggling with their addictions. Often, I have been ignored and devalued by the ones I love and this results in nasty rage with abusive words. These words, expressed in anger, are what they continue to focus on instead of their destructive path. They easily forget thatI have reached out multiple times in kindness, offering support and help.

Engaging with members of my family is a continual and complete reenactment of past abuse. I am often ignored and abandoned, and my concerns are downplayed with no action taken. Many times I am told, in so many words, that I am not seeing things correctly.  People become defensive and my credibility and intentions are questioned over and over. I end up feeling devalued and misunderstood. I have walked away many times and no one knocks on my door, worried and concerned. And when I return, people expect me to nearly deny my reality and erase the past history in order to dwell in their complacency and avoidance of the issues. It’s a continual bleed that no one wants to acknowledge or treat. I am tirelessly running around alerting people of the grave injury that needs immediate attention and treatment while others ignore, flee the scene, or argue with me that treatment is not really needed. Exhausting, really.

I wonder sometimes if they realize my rage and even abusive words is my bloody, messy process of carving out my self esteem? The voice of the child that sat frozen in fear for years has shattered into a million pieces and is finally tasting freedom and self worth. Of course, I am angry. What has broken them and muted their voice, has also broken me. And yet we turn away in our pain, instead of towards one another to heal. Historical patterns I will one day be free of because they serve no purpose.  They have no space in my life. These pattens have paralyzed me and my family and are no longer effective. I am in the awkward process of letting everyone know that I am awake. My voice is strong and clear. And I’m shedding the shackles that I’ve lugged around for years.

The initial softened words that my voice shared were tolerated. But the sharper ones, full of piercing frustration, are deafened by those still clinging to the familial fabric that has been created and perpetuated by the abuse and trauma that we all experienced at one time or another. Your voices have often faded into addiction and complacency, too fearful to rock the boat.  Rocking it might mean getting truly messy and feeling too much. I get it.

I hurt physically. I am fearful, letting the waves of grief crash into me. And, yet I am relentless in my resolve to heal.

I will rise. I will love.

I have screamed enough, often becoming ineffective in delivery as my newly freed voice was clumsy in delivery due to years of hurt and anger bound by silence. I bounced around from being appropriate to being purely abusive and was awkward and uncertain. Shouting at those hurting who are hidden behind their active addictions that erode their lives and potential. I don’t want you to disappear and I’ve been tirelessly banging on your door, if only you could see me and sit with me. I have a lot to share. I know it’s not time and fear it may never be time. I have to let go in self love to become stronger. I can’t hang around watching the devastation when no one hears my cries, it re-traumatizes me. I am right back there being shaken with no one listening, validating, or caring to protect my spirit. I am strong enough now to protect myself and can leave what is hurting me. I pray all of you find your strength.

Many times people get stuck in roles: older siblings, parents, etc. I’m eager to break these molds and discover common experiences between my family members. I implore parents to release their adult children, realizing their uniqueness. Children pass through us and never truly belong to us. Often these familial connections become so enmeshed we can no longer be effective with setting boundaries because we see them as extensions of ourselves. Their realities are completely separate from the one we hold in our minds that only belongs to us on a personal level. Age and order has absolutely no relavance on maturity and spiritual growth. It is the work you are willing to do on your spirit that defines you. It is a personal journey in the end. However, clinging too tightly and enabling will keep children tide up in the story of their parents, instead of creating their own story. Having expectations is crucial in developing esteem and growth. Pain is a necessary part of life that no one can be sheltered from and the sooner a person learns how to cope with pain, the quicker they will not only be more self-sufficient, but will have a richer life. People are free when they step away with their own separate story of what took place and honor their own reality.

I’m getting help in unpacking all of this and moving forward in my life. I’m disengaging from the heaviness to learn how to engage more effectively while honoring myself in the process.

And I will rise. I will love. I see so much of the cycle and I long for others to find their voice and be free. I remain in solitude in this space, filling my spirit with self-love and validation.

I will rise. I will love. The time is now and I will aggressively pursue my health, even if alone. In this beautiful place of solitude, I will cultivate MY voice and MY strength. And I am so grateful today my voice has been found. It is a hard lonely road at times that people often do not understand, but one worth traveling.