God and Madness

Spirituality has played a significant role in my recovery. It has shaped my perception of myself and how I relate to others in many ways. My relationship with my higher power has given all of my challenges purpose.

I want to share with you some of my journey. When I was a child and really into my young adult years, I saw God as an absentee parent whose main function was to punish bad deeds. So for many, many years my suffering was a confirmation for me of my badness. My suffering including abuse by family members and family friends and included my emerging mental issues. Something was wrong with me to my way of thinking and the pain I endured was proof.

This misguided perception determined how I felt about myself, my sense of what I deserved and how I allowed others to treat me. I felt that I was damaged, not deserving of love and affection. I was confident to my core that any kindnesses that were afforded to me by others were undeserved and based on conditions that required my humiliation and degradation.

All of this changed when I discovered and began to value my capacity for compassion. I realized one day that not only did I enjoy helping others, but that I was good at it. I came to understand that helping others in one way or another was what I was meant to do with this life. In the process, I help myself. In the process, I help myself overcome past hurts and set a tone of infinite discovery for my life.

Now my relationship with God is vastly different. It’s not based on my negative experiences with people like it was in the past. I have taken the time to get to know the God of my choosing and I have found Him to be loving beyond anything that I can imagine in my finite mind. I find that my God has blessed me with challenges that make me a blessing to others.

As I, with the Grace and mercy of my God, align my will with the Will of my savior, I share in His suffering. On the flip side of that, I share in His victory. My Catholic faith teaches me that just as His suffering has freed me from the chains of sin and death, my suffering allows me to help others free themselves from the debilitating effects of their mental health challenges on their lives.

What I mean is, I know what it is to live with and struggle through the barrage of seemingly never ending symptoms and side effects. I survive and thrive day by day. Without that knowledge I could not support the recovery of my peers. Therefore, my suffering has purpose. It’s not just about me. My challenges become about the empowering of others to live a life of their choosing.

I overcome my trepidation daily (sometimes moment by moment) and I get to experience the reward of watching my brothers and sisters move beyond their limited view of what is possible for their lives. When I see the light of possibility go on in their eyes I am inspired and encouraged. I am reminded that I am in good company.

It is an overwhelming sense of joy for me to watch my peers come to the realization that everything that had happened up to that moment is not written in stone. The multiple hospitalizations and/or incarcerations of the past are not an indication of the future. Just because they have had dark days with no hope, with no sense of purpose, with loneliness does not mean that it has to stay that way. Sometimes after our work together for the first time they realize that they have a choice and options and they have someone to support them on their journey.

I encourage my peers to tap into something bigger than themselves to find their purpose. And even when what I believe and what they believe are different we eventually come to the consensus that life’s possibilities are endless.

i am not my diagnosis

We define ourselves, in part, by the language we use to describe ourselves and others. If I say I am a doctor a certain image comes to mind verses if I say am a bug exterminator. The words we use to describe ourselves and others are powerful and affect every area of our lives from who we choose to love to the kinds of jobs we do. These words determine the types of risks we are willing to take and even how we worship. These words have a major impact on how we see ourselves and how others see us. These words even dictate how we are treated and how we treat others.

I’ve never thought of myself as crazy, but others have. My mental health differences, both before my diagnosis and since, have been the butt of jokes by people I wanted to call friends, by coworkers, past lovers and a few family members. I’ve been called eccentric, touched, weird and strange. These

labels without exception created a sense of aloneness and a sense of somehow being fundamentally different from others… at times even less than others.

That is the insidious power of stigma. It can actually transform how we perceive ourselves, our value, our worth, and our worthiness. So, a concrete example of this? A psychiatrist tells his or her client that they are a schizophrenic and will never be able to hold down a job or live on their own. This has and does happen all the time. The family of this unfortunate person hears this and agrees – yes, you are a schizophrenic and I will be responsible for you for the rest of your life.

This revelation changes the whole dynamic the family. Hopes, dreams, and expectations for the “schizophrenic” change to fit the diagnosis and the prognosis. Suddenly, life is truly limited for the client in the eyes of the family, community, etc. What is the effect on the individual? Well, now they are a schizophrenic and their quality of life is reduced to possibly getting a government check monthly that will not be enough to sustain them. So they will live in poverty and/or have to rely on the resources of their family and community. They themselves may decide based on this new label that meaningful work, a satisfying family life and contributing to their community is no longer an option. What kind of life is that? All based on a label?

Now imagine the psychiatrist had said you have a mental challenge called schizophrenia or your symptoms are consistent with schizophrenia? Then the illness becomes one element of a person’s identity not the all of who and what the person is. We who live with mental illnesses are not our diagnosis. We have a diagnosis. We are people first and the language we use must reflect this reality in order for us to be able to live full and meaningful lives. In order for us to be seen as daughters, fathers, workers, sisters and mothers, we have to use language that encompasses all that we are.

I’m not saying that our diagnosis does not matter or that we are not faced with certain limitations. I am keenly aware of how my illness limits me, however, it does not define me.

There was a time early on when it did define me. I was consumed by the label and what it would mean to others and how my life would be different than I had imagined it would be. So, at the urging of my therapist I spent time with others who had a diagnosis, people who were thriving and living meaningful lives. That gave me the inspiration and courage to look beyond my illness and imagine a life of my choosing. Now, I would never say “I’m schizophrenic” in the same way that some with cancer would never say they are cancer. I now say I have schizophrenia or I live with schizophrenia or I am in recovery from the debilitating symptoms of schizophrenia.

I choose to see myself as someone with options. I can succumb to my symptoms or I can get up everyday and challenge myself to be the best version of myself that I can be. I get to choose to be mother, daughter, sister, peer specialist, child of God, etc.…who happens to have a mental illness. 

nothing about me without me

Without self-determination people with severe mental illness who are in recovery can feel like they are just spinning their wheels. Self-determination in recovery is the process of taking back one’s life, of regaining control over one’s destiny. It’s about making decisions and advocating for the human right to make choices for oneself. Self-determination is the catalyst that moves true recovery from mental illness forward.

Self-determine touches every area of recovery from daily living to medical care. So for me self-determination manifests as a series of lists that I can check off and feel a sense of accomplishment. For example, I have list of day to day activities that have to be taken care of in order for me to get through my day. I start with the cleaning of my home and my personal hygiene. These things have to be in place before I can even think about accomplishing anything else. For people with mental illness this is a challenge because sometimes the symptoms of mental illness interfere with one’s ability to clean the cat box, wash the dishes, take a shower, etc. Sometimes, we have to fight for the sheer will to do these things.

This is where self-determination comes in to play. In these moments we have to use every tool we have to fight for the life we envision for ourselves. We have to use positive self-talk, affirmations, and we sometimes have to negotiate with ourselves. Like, I will get the laundry done and afterwards I will have cup of my favorite herbal tea and zone out in front of the television for 30 minutes.

Self-determination informs our decisions about housing, employment, finances, worship and relationships. We have a right to live in safe and affordable housing. We have a right to participate in meaningful work, have enough money for leisure activities, worship in whatever way we feel comfortable, and have mutually satisfying relationships.

In regards to our medical care, we have a right to person centered treatment. In this arena we get to make critical decisions about which doctors treat us, what treatments we receive, what medications we take, and what is done for us when we are in crisis. So, it’s critically important for us to use our tools like the wellness recovery action plan and advanced directives. These documents outline our wishes for treatment and care from family members, friends and healthcare professionals. They are living documents that that need to be modified as our lives change and transform. They need to transform with the ebb and flow of our daily living.

Many of us remember a time when decisions were made for us. We were told where we could live, what to eat and when, and if we could even leave the hospital after a crisis. Some of us were warehoused in mental institutions for years, subjected to cruelty and mistreatment in nursing homes, and babysat in day programs. Thank God times have changed. We have choices now and we need to take full advantage of those opportunities.

Sounds ideal right? So what could hold us back from living our lives in self-directed way? Well, there is fear. Some of us have lived lives where we were totally dependent on others and/or the government. We have been told by well-intentioned people that we are limited in our opportunities. Some of us have been told by doctors that we will never work again, that it would be irresponsible to have children or to expect companionship. We haves been told by loving family members that life is too stressful for us and we should just sit back and collect a check that will barely cover our living expenses.

And then there is ignorance. Many of us don’t know what’s out there and we are afraid to find out. We all don’t have a ton of experience navigating through this life and we aren’t sure how to do it. This is where peer support really shines. When we see recovery modeled for us by people who struggle in the same way we do we become inspired and hopeful. After all hope is the cornerstone of recovery. With hope, the possibilities are endless.

poverty

Poverty is a stark reality for many, many people who are challenged by severe and persistent mental illness. If your illness is debilitating to such a degree that you cannot work, what do you do? What are your options? I learned first-hand in 2007 what having a mental illness can do to one’s livelihood.

In 2007 I had my worst breakdown. I stopped being able to function at work and to some degree at home. I could no longer work 45-50 hours a week and earn the only income my young son and I had. Our household was devastated. But even in that devastation I was luckier than most. I was making a good salary and had outstanding benefits. So when the symptoms of my mental illness became unmanageable, I had short term disability to fall back on. It wasn’t much, but it was better than nothing at all. It was a third of my biweekly salary, which kept food on the table, but I still had to borrow from family to pay the rent and other expenses. Most of which I was never able to pay back.

I was also fortunate that I was given social security disability on the first try. Most people apply three or four times before they get it and it can take sometimes years. For me it was different, by the time my short term disability ran out, the SSDI had kicked in. Most SSDI recipients receive less than $1k per month to live on. The amount is based in part on how much you are earning at the time you become disabled. How anyone is expected to live on this is beyond me. For those who are only eligible for SSI, the amount is about $700 per month. This drastically limits where they can live, how well they can eat and the general quality of their lives. So for those who think relying on the government when you are sick is a walk in the park, think again.

These limitations make it extremely easy for some ill-intentioned predators to take advantage of us. If we have be designated a payee, someone who controls how our benefits are spent, then we are at their mercy. They decide how much food we can buy, where we live (usually a group home or rooming house), and what we do with whatever is leftover when the bills are paid-if there is anything left over. They decide how many packs of cigarettes we can have for the month, if we will have access to public transportation and if we will have enough toiletries to make it to the end of the month. Mental illness or not, we are still adults and should be treated with respect and dignity. We should be afforded choice, not treated like children just because we need support managing our lives.

As I’ve said, I’ve been extremely fortunate. My payee was my sister who afforded me choice and never made a decision about me without me. As soon as I was able and she supported me in managing my money and my affairs. She encouraged me to make my own decisions and be self-sufficient. Her encouragement gave me the confidence to continue taking care of myself and my son.

But everyone’s experience is different. We who live with mental illness and are disabled or limited in how much income we can earn, have difficult choices to make. We often choose between meds and paying the bills. Amenities that many take for granted like access to the internet, personal vehicles, personal computers, or cell phones are often out of reach. I’m really talking about the quality of one’s life on a day to day basis.  Just being able to go to the movies or take a day trip or get your nails done are more than some of us can afford.

This life of lack, where sometimes even the basic life necessities are absent certainly has an effect on our mood, our symptoms, out stress levels and our ability to cope. Add to that the never ending hoops we have to jump through to maintain our cash and medical benefits from SSI and SSDI. Random reviews of our medical conditions to make sure we are still sick enough to receive benefits. Limitations on the amount of income we can earn when we finally get to a point that we want to try to work again (that’s not an option for everyone.)

Then there is the convoluted process of trying to pull oneself out of poverty and get off of SSI or SSDI. Do you write a letter to the government agency that has been supporting you for years or do you call them? What if they don’t stop payments when you request them to stop? Are you liable for the overpayment? If you are liable, what’s the likelihood that you can pay it back? It’s a never ending cycle that can cause hopelessness and dependence and despair.

I don’t know what the answer is, but I can tell you first hand that the system that is in place isn’t working. Too many of us are suffering unnecessarily in silence and alone. There needs to be stricter penalties for payees that abuse their power and landlords who overcharge for rooming houses. And there needs to be a more universal process for starting and stopping benefits (you can call the SSA three times with the same question and get three different answers.)

Maybe the answer is greater self-advocacy by those living with mental illness. Maybe the answer lies in mass letter writing and petition campaigns for dramatic change to occur. Maybe change will come when our supporters stand up and let their voices be heard. Or, maybe it will take a revolution of individuals quietly and consistently respecting the dignity of every person challenges by mental illness.

walking the talk

Self-talk is a common theme for those of us in recovery from severe and persistent mental illness. But what does it really mean in the day to day life of someone living with a mental illness? It can be the difference between a life of misery and a life of hope.

Self-talk are those automatic thoughts or statements we make about ourselves. They are based on our past experiences, beliefs about ourselves and even our fears. The most dangerous kind of self-talk is negative and comes from a lack of self-awareness. We think or say these unflattering things about ourselves before we have had a chance to even consider the reality of our circumstances.

My favorite negative self-talk thought/statement is “I’m so lazy.” In my rational mind I know it’s not true. I know the truth is that I work hard everyday to do my job well, take care of myself and my family, contribute to the community, etc. However, this fallacy continues to find its way into my thoughts, conversations, etc.  It haunts me like a nagging tooth ache. And worse, it guides my actions.

One missed deadline or undone load of laundry and it rears its ugly head. So what do I in response? I beat myself up for not living up to some unrealistic expectation and then work twice as hard to live up to some unrealistic expectation. The reality is that as a single mom who works full time and has a mental illness, I’m doing pretty well and I’m not lazy. If the negative thought or statement were only that, we might be okay. However, when we start making decisions based on negative self-talk or begin to feel bad that is when we get into trouble.

What I try to do is process my negative self-talk like this. If I am feeling bad about myself or a situation, I stop and ask myself “what have I been thinking about?” If I can identify the thought that invariably precedes the negative feeling then I can do a reality check. So if for example I am feeling bad about not being able to buy my kid something, the preceding thought might be that I am a bad mother. Well a reality check shows the opposite. A reality check is the statement “I am a support system for my son, I give when I can and he has never wanted for anything he needed.” Therefore I’m a pretty good mom.

That last part is essential. I replace the negative self-talk with a statement that counters it. It takes practice and determination to fight negative self-talk. When I first started using this technique I would feel awkward, kind of like a phony because I would repeat the statements but I didn’t always believe them.   The great thing is you don’t have to believe them right off. After a while you will grow to believe them through repetition--- just like you did the negative self-talk.

Negative self-talk is a product of low self-esteem. If you listen carefully to it you can probably trace it back to a disapproving parent, unsupportive teacher, a bully, or our own deeply entrenched insecurities. But we have a choice in what we take to heart and act on. We can succumb to the thoughts and words that stunt our growth, prevent us from living a life of our choosing or we can fight it. In the midst of our mental health challenges and our life challenges we can choose to fight.

I don’t mean to suggest that severe mental illnesses like depression can be overcome by simply changing one’s thoughts. That would discount the devastating effects of the symptoms of mental illness. What I am saying is that we have more control over our mood and actions than we give ourselves credit for. To live the life we want to live we have to use our minds and our voices to bring that life into existence. I speak positivity into my life even when I’m not feeling it, even when my symptoms flare up, even when my circumstances would have me believe that things won’t go my way.

I would love to learn about other methods and strategies to counter negative self-talk. Please comment below.

stigma

Stigma is an insidious force in our world. It lies and frightens. Stigma creates division and victimizes the most vulnerable of people. Stigma at its core is ignorance. We fear what we don’t understand. It’s not just external, not just the stereotypes and misconceptions that are thrust upon those living with mental illness. It’s also internal, the untruths we grow to believe about ourselves.

The negative effects of stigma are dangerous. People with severe and persistent mental illness are not deaf to the jokes that run rampant in our society about mental illness. How many times have you heard someone joke that a person or situation was bipolar? Without knowing what these psychiatric labels really mean, we as a culture assign inaccurate attributes to people with mental illness that are far from flattering. This insensitivity to the suffering of others causes people who need help and compassion to shy away; to suffer in silence.

People struggling with mental illness often won’t get the help they need and deserve because of the fear of what others will think or say about them. If you see a therapist and psychiatrist that means you have issues or are crazy right? If you take medication to manage a chemical imbalance in your brain that means you are volatile, unstable, or dangerous right? What about the labels we get when we have a mental illness? Am I more likely to go on a shooting spree because I have been labeled schizophrenic?

The truth is people with mental illnesses are more likely to be victimized and taken advantage of than they are to victimize someone else. However, the media would have you believe that every violent attacker or perpetrator of a mass shooting had a mental illness. The first thing they say is that anyone who would commit such a heinous crime must be mentally ill. That’s just not the case. Isn’t it possible that the kind of people who commit these crimes are just criminal, bigoted, hateful and bent on the destruction of other people?

On a personal note, I have faced stigma in the work place and suffered trepidation at disclosing my diagnosis in my community. In 2007 my symptoms became unmanageable and I asked for assistance and help from my supervisor. He joked that something had better be done before I kill myself. Because everyone with a mental illness is suicidal right? I was in crisis and that flippant remark stung. If I had been a cancer patient would a joke like that have seemed appropriate to him?

So, in my mind the solution to the negative effects of stigma is education. People who have mental illness and those who support people with mental illness must take it upon themselves to educate the world one person at a time. We must resist the temptation to hide our illness and our struggles. We must be transparent and let people who have no experience with mental illness walk with us on our journey.  We need to attach a face to mental illness that can counter the one the media has put forth. This will take courage, determination and patience.

breakdowns

Breakdowns are inevitable. They happen for a number of reasons. Sometimes our coping skills are simply overwhelmed by stress filled circumstances. Sometimes our medication stops working and sometimes a myriad of events occur in just the right configuration to stop us in our tracks. What we hope we learn as we maneuver through our lives is how to spot the warning signs before we breakdown.

My first breakdown occurred when my son was very young, around the age of two. I had moved back to Buffalo and was living with my mother. I was working part time at a great job, but was under a lot of stress. At that time I had not been accurately diagnosed and my mental illness was not being treated. Looking back the breakdown had many warning signs. I was not equipped to recognize them and I had nothing in place to manage my circumstances. One day I took my son to daycare and then could not stop crying and shaking. I called my mom and she took me to the hospital. That was my first hospitalization for mental illness.

I was fortunate. The doctor on call was very progressive. He didn’t ask me what was wrong with me, he asked what happened to me. I told him about the racism I faced at work and the feelings of failure I had over moving back home. He told me to pull myself together and go home to raise my son. He was unconventional, but that’s what I needed to hear to get back on track. I spent seven days in the hospital, left with a script for an antidepressant and went back to my life.

There are a number of tools that we can use to bypass a breakdown or at least move through one with the least amount of trauma. There are Wellness Recovery Action Plans (WRAP). This tool assists in identifying triggers to a breakdown and warning signs. It’s a comprehensive document that can be used to direct care when we are not doing so well. It informs clinical staff and our supporters about how we want to be treated when things get hairy and we aren’t able to care for ourselves fully. It’s a living document that changes as we change and as our circumstances change.

There is also an advanced directive. This document lets your supports, including doctors, know how you want to be treated in case of a crisis. You can outline definitively which hospitals you want to be treated at, what medications are acceptable to you and who you want involved in your treatment. You can also specify who you Don’t want involved. These documents are effective, but you have to let your supporters in on them and you must keep them updated with current information.

Breakdowns are difficult for everyone involved, but they can be survived. In my darkest days I tried to focus on what I actually could control instead of all the things that seemed like they were spinning out of control. In doing that I felt less powerless. I've been fortunate because I have always had the support and love of my family. They haven’t always known what to do or say, but they have always been there.

Everyone doesn’t have this support from their family and that is where peer support comes in. It’s important to cultivate a circle of peers who can be there when you are doing well and when you are not doing so well. Some kind of support from others is essential to surviving a breakdown. If you are deep in despair and trying to keep your head up, don’t give up. Recovery is real and this is just a bump in the road. We can and do recover.

hope

Hope. It is the cornerstone of recovery. Without hope we view our lives from very limited perspectives. We tell ourselves that we can’t live a life of our choosing because we are sick. Without hope we define ourselves in terms of our diagnosis, our symptoms, and our dark days. We say things like I’m a schizophrenic instead of I live with schizophrenia. Without hope we succumb to the debilitating effects of our illness; we linger in sadness, hopelessness and regret.

Hope can be illusive at the start of our recovery. Like a firefly in the night we catch glimpses of hope out of the corners of our eyes. For me hope began with the birth of my son. In my darkest days I slept twelve or more hours a day. Only getting up to care for my young son. It was his laughter that gave me hope and it was his basic need for a mother that kept me going day after day.

In my darkest days of battling symptoms that I didn’t even know were symptoms, I worked hard to create a normal life for my son Joseph. I made sure his clothes were clean, made sure he got to school on time, helped him as much as I could with his homework and kept him busy with after school activities. My greatest regret is where I failed him. All parents fall short in some way and I was no different. Due to my illness I wasn’t always emotionally present for him.

Sometimes I was so caught up with taking care of the necessities that I missed things. He has a sleep disorder that began to manifest when he was around twelve. I missed the onset of it and chalked his complaints up to puberty. I was so preoccupied with making sure there was food in the house and that he had the latest popular video game. I was preoccupied with keeping my head on straight so that I could keep the rent paid and the lights on. Often times I just didn’t see what was happening to him and how he was affected by my illness and my sometimes self-destructive coping mechanisms.

But I always had hope because I had him. My hope sprang from my love for him and my desire to do something right. That something right was being a good mom. I couldn’t get lost in my delusions, go into the hospital, spend all our money in a fit of mania or engage in risky behavior because there was Joseph to think of. There was his present and future to consider before anything else. 

My son still embodies hope for me even as he moves into adulthood and needs me less or maybe in different ways. I work hard at my recovery for myself first but also for Joseph. I live my life now as a model of what is possible. Everyone has challenges; some of mine involve my mental illness. So I persevere for myself, but also for Joseph. I persevere to remind him that he can live the life he envisions for himself despite his own challenges. 

peer support

In order to talk about peer support I need to define what a peer is. Plain and simple, a peer is anyone living with a mental health and/or addictive disease challenge. So, in peer support we do just that; we support one another in our recovery. What does support look like. Support is an encouraging word, positive feedback, the sharing of ideas and skills and camaraderie.

Peer support can happen anywhere at any time between two or more people who are active in their recovery. What is recovery? Recovery is moving at one’s own pace towards a life of one’s choosing. Peers don’t have to be at the same level of recovery to support one another or be recovering from the same thing. They just have to be committed to moving forward and be willing to use their lived experience to help someone else.

In peer support we don’t really give each other advice. Rather we speak from our own very personal experiences. This exchange of ideas and experiences differs from a clinician patient relationship in that no one is the expert on anyone else. We are all experts on ourselves. We know better than anyone what works for us and what doesn’t.

The value comes from the discovery of our strengths, skills and talents. Together we figure out what we are good at, find the courage to pursue those talents and find meaning in our trials. Our trials and dark days really do make us stronger and better equip us to manage our lives. We come face to face with the truth of who we are and what we are capable of. We find personal power in the fact that we are more than survivors, we are thrivers.

We do this together in nonjudgmental environments where no one person is the leader; where there are no followers, only participants in the process. Everyone is accepted for where they are in the process and although there is no insistence that a person move quickly through their recovery, there is peer pressure. Pressure to be the best version of one’s self on any given day. This miraculous and life affirming exchange can happen in a fast food restaurant, a community center or in a formal peer program. It can happen at the bus stop or in someone’s living room.

In wellness centers in Georgia peer support happens individually and in groups. Trained and untrained peers can facilitate peer support. In clinical environments trained peer specialists facilitate individual sessions called peer to peer and recovery groups. In all these interactions, lived experience is used to transfer life skills to one another.

We are a tribe of thrivers who experience the world in very different ways. Some of us experience mood swings, some see things that others can’t and some hear things that others can’t. The thing we all have in common is hope. We hope for a better future, a future in which we live the best possible life we can. We hope for a future where we are seen as more than our diagnosis and dark days; a future where we can be fully mother, father, sister, son, CPS, peer, etc. And miraculously, we are all welcome in peer support. No one who hopes for a better tomorrow or is active in their recovery is excluded.

suffering

To be sure, having a mental illness means suffering. There’s no getting around it. However, it is worth noting that those who live with severe and persistent mental health challenges do not suffer in vain. I suppose this perspective depends a lot on one’s spiritual beliefs and one’s take on the notion of service to others. When we use our suffering to reach and free others from the misconception that we are victims of our illness we give meaning to it.

It has a purpose. It strengthens us and transforms us into heroes really. We save ourselves and others from soul crushing sadness and despair. The suffering we endure and survive is a measure of our personal power of perseverance. We survive it, learn to manage it, overcome it, and thrive in it.

People who live with serious and persistent mental illness suffer stigma, side effects of psych meds and of course the symptoms of their mental health challenges. The stigma comes from ignorance and fear. It doesn’t help that the media portrays us as violent, unstable and unreachable. The fact is, we are no more likely than persons without mental illness to commit violent crimes. In fact we are more likely to be the victims of crime. We suffer from being misunderstood and inaccurately categorized.

We suffer the debilitating side effects of the medications we use to manage our symptoms. We suffer the inevitable comorbidities that come with the side effects, like obesity, hypertension, diabetes, high cholesterol, sleep apnea and so forth. And of course we suffer from our symptoms, such as auditory hallucinations, mood swings, paranoia, delusions, etc.

However, there is meaning in our suffering because we survive it and thrive. When we are able to live a life of our choosing we model survival for others. We instill hope in the hopeless and often bring others back from the brink of despair. We become an example of what is possible. We don’t have to live a life of martyrdom. We don’t have to have tragic ends. We can and do thrive.

recovery is real

Recovery from mental illness is a very personal thing. It means different things to different people. For me it meant getting off of disability and working full time. It meant getting to the point where I could manage my symptoms well enough to do some kind of meaningful work and be independent again. It meant being fully present for my son.

For some it means the ability to get out of bed in the morning and have some sense of purpose. For others it means quieting the voices in their head long enough to have a conversation. Ultimately recovery is a process, the getting from one place to another.

Recovery is rethinking one’s life to include the realities of mental illness. It’s getting from the question of what’s wrong to what’s strong. Recovery is reclaiming one’s life. It’s finding a way to be the best version of oneself in spite of the debilitating effects of mental illness.

In my darkest days I slept 12 sometimes 14 hours per day. I would go days without bathing and ate all the time. I ate for comfort and to numb my emotions. In 2007 I broke down. I didn’t understand what was happening, but my symptoms were out of control. I was hearing distressing voices, crying all the time, not sleeping much or sleeping too much and eating everything I could get my hands on.

One day I went out for lunch at my job and knew I was never going back. I sat in my car fighting back tears of utter defeat. I had no idea what was wrong, but I knew I couldn’t go on like I had been. After 10 months of borrowing money from my brother and sister to take care of myself and my young son I moved to Atlanta to be closer to family. I remember crying on the phone with my sister saying “it’s all falling apart.” To her credit she calmly encouraged me to let things fall apart.

When I complained that I didn’t have the money to move she countered with” I’ll pay for it.” She knew I was sinking, but she wasn’t going to let me drown. A friend helped me pack the 24 foot U-Haul truck and I drove from south Florida to Georgia with my son beside me and our cats Luvy and Duvy in the back.

Again, my sister was there for me. She set me up in one of her rental houses and let me catch my breath. I got into a routine fast that centered around making my son’s life as normal as I could. It was very hard on him. I had just uprooted him from the only home and friends he had known for five years. I yanked him out of his fifth grade year in the middle of the year and dropped him into an abyss. I never slept when he was awake. When he was awake I kept my voices and tears at bay. I played with him, helped him with his homework, watched TV with him and basically tried to reassure him that everything was okay.

In 2009 my therapist told me about this thing called a peer center where I would find support with living with a mental illness. I went to the Decatur Peer Support and Wellness Center with no expectations. I asked the staff if they had an art class, they said no and then the director asked me if I wanted to teach one. I thought about it for a whole five seconds and said yes. For nine months I facilitated an art class. It was great. It gave me the confidence to apply for another part time job at a local music nonprofit. I did that for a year then went back to the center and applied for a job as a peer specialist. I was hired and my recovery really began full steam.

Just being around people in recovery was good for me. Having my experiences validated and not feeling the pressure to be happy and well all the time allowed me to feel free. Everyone around me had a diagnoses, but that didn’t stop them from doing their job. Nine months into the job, my supervisor sent me to get my certification. I was energized and transformed by being around so many recovery centered people. I was inspired by being in such good company. These were my peers and they were living a life of their choosing. The first night of the certification training I texted my supervisor and told her I wanted to work full time.  There were no full time positions at the center and three months later I was working full time at another agency.

So how does one get from there to here? Simply put, one fights. One fights every day, sometimes every minute to live a life of one’s choosing. No one, not me, not my therapists, doctors or family thought I would ever work full time again. I was convinced that my life would be a never ending battle of scraping and scratching to get by on disability. I was convinced that my illness was who I was and would decide whether or not I could live with purpose. Then someone said to me what I needed to hear…” you are more than your diagnosis and your lived experience with mental illness has value.”

Recovery from severe and persistent mental illness is real.

psych meds...the not so skinny

Psychiatric medications can do wonders to help people manage the symptoms of severe and persistent mental illness. I have been taking psych meds for nearly 25 years and the experience has been both a blessing and a curse.

The struggle stems from the myriad of debilitating side effects and the exorbitant cost. From my personal experience psychiatrists have a one track mind. They appear to only be interested in resolving my psychiatric symptoms… as they should be. However, they don’t place any emphasis on the side effects of the medication. While taking an antipsychotic once, I began gaining unbelievable amounts of weight. I must have gained 80 pounds in less than a year. My doctor at the time asked what I wanted most, to be sane or to be skinny.

In his mind it was an either or scenario. He didn’t take into account all the damage to my physical health that the weight was causing. He didn’t appear to be concerned about the pain in my joints, the sleep apnea, high blood pressure or prediabetes. He only appeared to care that my voices were manageable. That taken care of, his job was done.

My general practitioner on the other hand was livid. How could I let things get so bad? Didn’t I care about my health? Didn’t I know that people with mental health challenges die on average 25 years earlier than those without? And when I explained that I was struggling to maintain my sanity with highly potent meds, she didn’t believe me. She didn’t believe that the meds I was taking could have the effect on my physical health that they did. She blamed my ills on my lack of discipline and inability to regulate my eating habits.

Is it any wonder that people who really need psych meds often go off them?

Other troubling side effects include hair loss, foggy thinking, slurred speech, excessive salivation (drooling), stiff muscles, drowsiness, erratic uncontrollable movements, nausea, headache, insomnia, constipation, dry mouth, dizziness, light headedness, high blood sugar, hypertension, seizures, death, and on and on. Again, I ask, is it any wonder that people who really need psych meds go off them?

Then, there is the cost. First let me just stress that everyone with a psychiatric disorder does not have health insurance. And even with health insurance there is no guarantee that you can get the meds that work best for you. From my experience, the most effective meds with the least amount of side effects are the most expensive. I once came across a med that worked brilliantly. Very mild side effects, totally squashed my psychosis, and easy to take. A thirty day supply was $1500. It took me two months of letter writing to my insurance company and two months of a less effective medication to get them to pay for it.

For many, psych meds are a way of life. They can be transformative and make it possible for people living mental illness to live the life they want to live. However, users of psych meds can pay a high price for their sanity. It is a delicate balancing act between managing one’s illness and the sometimes debilitating side effects and comorbidities. 

There’s no easy solution, but a step in the right direction could be better communication between behavioral health clinicians and medical doctors. A collaborative effort between these individuals coupled with greater self-advocacy by peers could make all the difference.

disclosure

Disclosure is a big deal for people living with severe and persistent mental illness. The question becomes not only who do I tell, but when and how much. For me disclosure is on a need to know basis. In my line of work, however, it is almost impossible to conceal it. Certified Peer Specialists are required to have personal experience with mental illness and we use that lived experience of recovery to support others on their journey to recovery. Our experience with living with a mental illness gives unparalleled legitimacy to our belief that everyone has the capacity to live, learn and grow.

The greatest challenge in disclosing is that there’s almost no way of really knowing how someone will respond. Will they be tolerant, compassionate, politically correct, frightened or simply turned off? You just don’t know until you do know.

As much as I have been rejected after my disclosure, I have been embraced. I’ve experienced many different kinds of responses.

Early on when I told some of the members of my extended family, I was told that mental illness was a myth; a construct of the pharmaceutical  industry to ensure reliance on medication for the purposes of big profit. All I could think in reply was tell that to my voices! Other family members asked me repeatedly if I was sure, didn’t I want to get a second opinion? One family member, my sister, said what I needed to hear most. She said, “Okay, how are you going to manage this? What can I do to help?” She continues to this day to be a blessing to me.

When I talked with my son about it, his response was that it’s just a label. Another awesome response I got was from a former employer. She hired me for my first CPS job and said “Come to work anyway.” This is what she said to me when I expressed concern about being symptomatic. “Come to work anyway.” That meant I didn’t have to put on a happy face and pretend that everything was okay. All I had to do was show up and do my best. That freed me and I have taken that philosophy with me. All anyone can be expected to do is show up and do their best.

I’ve also had some awful responses. I once had another CPS tell me that he could not be friends with me because I have a mental illness. Yes, you read that right. Another person with a mental health challenge rejected me for having a mental health challenge. I had another person come to my home, break bread with me and my friends only to stop taking my calls when he found out about my illness.

This would never happens if I disclosed I had irritable bowel syndrome or diabetes or eczema. Never in the history of mankind has someone been rejected for having a heart murmur. My point is, these are all medical conditions. These are all physical issues. Well, so is mental illness. The brain is an organ just like any other and it can get sick like any other. So why do we as a society fear this sickness over others? Why is it that for some people mental illness is a deal breaker? It can be managed like other illnesses. It can go into remission. People can and do recover.

Manifestations

I have often been asked what it is like to hear voices. It’s not an easy thing to describe because it isn’t a singular experience like bowling. Bowling is a singular event. It’s a ball and pins and the effort you put into knocking those pins down with the ball. The people you bowl with might change, what you get from the concession stand might change, but the act of bowling never changes.

Having voices is like having a life within a life that only you are privy to. It’s not just someone talking, well it can be like that, but it’s deeper than that… richer than that. It’s someone with a distinct personality sometimes. Someone with definite opinions and a specific outlook on your life.

The voices gave me advice; go there or don’t go there they would warn. Trust this person or stay away from that person they would coach. Go down this road, apply for that job, and on and on. There was a time when I felt comforted by them. But they also condemned me. They would sometimes tell me that I should be dead and that I was worthless. In those times I used positive self-talk to combat the effects of the negative messages. I would challenge the voices with reason. I would talk back with life affirming declarations. And to my surprise it worked. The voices would fade for a time.

Sometimes they did not even talk to me, they talked with each other. There were times when they were oblivious to me. In those moments it was like having the TV on at its highest volume in another room. I could hear snippets of the broadcast, but not the whole thing. There’s also the music. A song would play in my head incessantly. But not the whole song, just a series of lyrics. It’s not like getting a jingle stuck in your head where eventually you get distracted and it goes away. This music plays behind your dreams and blares like a trumpet when you open your eyes in the morning.

So while all this is going on I still have to go to work, I still have to be mother to my son and I still have to respond to the life outside of my head. Medication helps and distraction and sometimes just telling the noise to be quiet helps. But some manifestation of the noise is always present.

Now I help others manage their manifestations. That’s not all I do as a Certified Peer Specialist, but it’s one of the things I do that is most gratifying. I get to see someone who feels ruled by their voices learn to manage them and actually thrive with them.

Some people respond well to medication and some don’t. I take meds and they take the edge off, but the voices are never far from me. Even with the meds a stressful situation can override their effect on my voices. So, I’ve stopped trying to get rid of them. They are a part of me. They help make me who I am and of equal importance they make it possible for me to help others faced with the same challenge. 

new beginnings

I could probably go my entire life without writing a blog, but then my story would never be told. We all have a story and just like you my story is filled with ups and downs, twists and turns, good and bad. My story includes dark valleys and triumphant mountains. If you’re reading this, your story includes the same because you’re here. Despite the roadblocks, you’re still here.

So, my blog will delve into the experience of living with a mental illness, of being more than a survivor but rather a thriver. Yes, I am thriving with a mental illness. I run races, I’ve raised an awesome talented son, and I work full time in the mental health field as a Certified Peer Specialist. However, every day I live with the symptoms of psychosis. My diagnosis? Well, that’s complicated. Over years I’ve been told I have bipolar disorder, schizophrenia and schizoaffective disorder. It seems that what I have depends on which doctor you ask. What I know for certain is that I live with voices, mood swings, depression and mania.  I am more than my diagnosis. My identity includes being a daughter, sister, artist, mother, writer and professional helper.

My journey has been a process of becoming the best version of myself possible. I hope you will come along with me as I recount some of my highs and some of my lows; as I continue on this path to living a life of my choosing. After all, that’s what we all aspire to; a life lived on our own terms.