intentional gratitude

Life is hard. There’s no getting around this fact. It’s hard because it’s unpredictable. We can prepare for every imagined scenario and still get blindsided. We can have safeguards in place like life insurance, car insurance, a fat savings account, etc. and life can overwhelm it all in a heartbeat. So how do we keep our sanity in the midst of this unpredictability? We must live and breathe gratitude.

Speaking only for myself, I take things one moment at a time and I live in gratitude. When my thoughts start running into ‘what will I do about this of that?’ I come back to the present moment and remember what’s good in my life. The blessings of the day always overshadow the worries of tomorrow.

I do my best to live each moment in gratitude. It permeates every moment of my life and inevitably leads me to meditate of the goodness in my life--- in the world. I used to make lists in my head, sometimes on paper, of all the things I was grateful for. My imagination was key to me appreciating all the blessings that surrounded me. I would imagine for instance what my life would be like if my car broke down and I had no means to fix it. What if I fell behind on my rent and like many people had to live on the street? I would let myself briefly imagine not having enough food to eat or not having anyone to call on for help. This process put things into perspective for me. I didn’t dwell on the possibility of calamity, but I did remind myself that things can always be worse. As a matter of fact, things have been worse!

This process always leads me to prayer. In these moments it becomes imperative that my higher power knows that I am thankful for what He has provided me. Sometimes I am brought to thankful tears when I think of my early days of recovery when I could barely hold a conversation. Back then I was so overwhelmed by my symptoms that I couldn’t maintain a train of thought. And now, deep in my recovery you can’t shut me up. Things have changed dramatically and I’m grateful.

So, I encourage everyone, not just those living with a mental health diagnosis, to live in gratitude. Start small and acknowledge just one good thing a day. I guarantee that it won’t be long before you have a list a mile long of things and people you are grateful for. Gratitude will energize you and give you strength. It will give you a quiet courage to overcome your struggles. And when you share your gratitude with others, you pass on hope. 

when the meds stop working

For those of us with a mental health diagnosis who use psych meds as part of our recovery, the possibility of the meds becoming ineffective is a frightening thought. Finding the right med or combination of meds is difficult. It can be a daunting process of trial and error. For me it had gone like this, I have taken a pill or injection and had to sit back and wait to see if it has any effect on my symptoms. In addition to the waiting there is watching to see if I can tolerate the side effects.

Most meds can take up to a month or more to be effective. In the meantime I’ve endured my symptoms along with a host of reactions to the meds like nausea, vomiting, fainting, headaches, weight gain, light headedness, etc. The list goes on. And you can be sure throughout this process I am counting the days until the benefits of the meds kick in. Then by some grace I find the right cocktail of chemicals and get a bit of relief. Whew! And all the while I am trying to maintain the life I’ve created… my job, my family, my friends, etc. It’s an extremely delicate balance.

So now, life is good again. I can focus on the people I serve as a CPS, I can concentrate during work meetings, and I can be fully present with my family and friends. By the power of these chemicals and my arsenal of coping strategies, I have reached my baseline, which isn’t perfect, but certainly manageable. I’m talking about a state of being that most people take for granted.

Then like someone flipping a switch, it all goes to hell again. I can’t focus and I’m irritable with no filter to hide it. I can’t sleep or can’t get enough sleep. I’m starving all the time or have no appetite. People around me are walking on egg shells asking if I’m okay in a way that lets me know, I’m not okay.

This happened to me about seven weeks ago. My work was affected negatively. That was my first warning sign. I couldn’t get my paperwork in on time and the quality of the time I spent with the individuals I work with was dramatically diminished. I couldn’t focus on their concerns because I could barely hear them over the noise in my head.

When I tried to talk with my psychiatrist, he did what most do… he started throwing pills at me. He literally gave me a new script every time I called him. None of them provided any relief, just awful side effects. I couldn’t tolerate them, so I couldn’t take the meds. This got me a new label with my doctor, “non-compliant.” I changed doctors. Recently I found the right chemical with a different doctor. What made the difference wasn’t just the meds, it was the fact that the new doctor listened. She heard me when I said weight gain was an issue, that day time drowsiness was not an option and when I explained that cost was a consideration. She listened to me.

You know what else helped? My support system. My friends and family jumped into action and rallied around me. My friends treated me to the movies and lunch. My son put up with my moodiness and held the hope that I would feel better soon. My family made sure the rent got paid and waited patiently for me to feel better.

So it happens. The meds can fail. This is why it is so important to have a plan in place. It’s funny, when you’re well you think you will always be well. It’s hard to imagine that there may come a time when your symptoms will resurface and turn your world upside down. So when you’re feeling alright, it’s important to get your house in order. I don’t usually endorse any one product, but WRAP (Wellness Recovery Action Plan) is a great way to get prepared. It’s a living document you create in wellness to get and keep yourself well. It’s a document you can share with your supporters to keep them in the loop. They say it takes a village to raise a child, but I think it takes a village to maintain wellness. 

self-advocacy

It wasn’t until I took the training to become a peer specialist that I heard the term “self-advocacy.” Immediately it terrified me. Being an innately introverted person I had nightmarish visions of having to stand before a group of people and ask for something for myself. In more than 25 years of psychotherapy no one ever challenged me to ask for what I wanted or needed. So, I was terrified.

Terrified because right away I understood that I would have to rely on some deeply held belief that I actually “deserved” what I might be asking for. I wasn’t sure I had that belief yet. So, it became apparent to me pretty quickly that self-advocacy at its root is based on self-love and a belief that we in fact do deserve to get what we need and want to thrive in this world.

This concept is difficult to swallow for many of us who have been diagnosed with a mental illness. One has to keep in mind that from the start of our journey through the psychiatric system we have been told what we need and should want for ourselves. We have been told that a roof over our head, food in our belly and minimal symptoms is what we should be shooting for. I would venture to say that never has a person with a mental health diagnosis gone to a psychiatrist and heard the words “You are an expert on you. What do you want to try?”  From my experience and the experiences of the peers who have confided in me, this scenario just doesn’t exist. So we get used to being told what to do and what our life expectations should be.

If we are fortunate enough to be introduced to the recovery movement then our perspective has a chance to change, grow and mature. From my experience, self-advocacy is a process of getting to know ourselves, what we want and what we need to grow and thrive. It is the process of finding our voice and gathering the courage to use it to further our recovery and the recovery of our peers.

It begins with our families. It begins when we educate our loved ones about what we are dealing with and teach them how to support us in our endeavors. Self-advocacy within the context of our family lives means asserting the role we wish to and are capable of playing in our family dynamic. There is a tendency within even the most supportive families to see support as paternalism. Adults with mental illness are still adults. Therefore as adults, it’s our duty to assert what we can contribute to the family and take an active role in the health and wellness of our families.

Self-advocacy means playing an active role in our treatment with health care providers. It means being intentional in our actions. Too often we allow our doctors and therapists to come up with goals for our treatment plans that are therapeutic. These goals look great on paper and are definitely insurance billable, but have very little to do with how we are actually living. We know what works for ourselves and what we want to accomplish, so why not have that reflected in our treatment plans? I’m not saying it’s easy, but if we are not defining our goals and visions for our recovery then what in the world are we doing? What in the world are we spending our time and money on?

Self-advocacy is about social justice as well. Without fair and equitable laws that protect our rights we find ourselves in abject poverty, living in substandard housing, being abused by predators, and being disregarded by the psychiatric community. Self-advocacy means joining your voice with the voices of your peers to stop forced seclusion, ECT, and restraints in hospitals. It means demanding equal and fair treatment when seeking safe and affordable housing. Self-advocacy means using your voice to stop discrimination in employment. It means holding our institutions and our society accountable for the treatment we receive in all areas of our life. It means fighting stigma.

Not everyone is going to be at the top of their game in all areas of self-advocacy. But there is a role for us to play. We can all do our part in whatever area we choose.   

what's in a name?

Mental challenge or not, when you reach a certain age you start to wonder what your life would be like had you made different choices. At least that is the age I have reached. I wonder what my life would be like if I had said yes to marriage or chosen not to further my education or if I had chosen to stay in my hometown. As a Catholic I wonder what kind of choices I would have made if I had been raised in the church instead of taking a very winding road to Catholicism.

I wonder quite a bit about my health. What if I had known that my paternal grandmother struggled with paranoid schizophrenia like I knew my maternal great aunt had gone blind? Would I have sought out treatment when I began to hear things that others couldn’t hear? Would I have questioned my dark days as depression instead of chalking it up to being a moody cancer? Would I have denied myself the support of the clinical and peer communities for so long?

Technically, I think I’m considered to be over the hill and these are things I wonder about. There are no regrets in my wondering, just curiosity. Everything I have done up to this point has led me to this life. I love this life. I love being a peer specialist. It’s like being a teacher of sorts. I get to teach people from diverse backgrounds how to take stock of themselves to work with what they’ve got to get to where they want to be. I get to meet them wherever they are in their journey; discover with them where they want to move forward to and help them see what they already have inside them that will get them there.

It is an act of service that inspires me to move forward in my own journey. To be honest, it’s not always sunshine and lollipops though. Sometimes it’s really difficult. It’s not difficult because of the individuals I work with. They move at their own pace, at their own rhythm and get there-wherever there is for them-in their own time. It’s difficult sometimes because of the many movements occurring simultaneously.

I have my feet in so many worlds, all striving for the same thing-social justice. All of these movements want to see individuals of all walks of life get a fair shake. They want to see institutionalized “isms” eradicated and they want all people to have opportunities to live a life of their choosing. The challenge is in the language. There is no common language and the terminology we are throwing around seems to change like the seasons. It’s hard to keep up.

One group asserts that if a person is struggling with an altered perception of themselves or the world then they have a mental illness. Another group says, no, there’s no such thing as mental illness; there is only mental differences. And everyone is do touchy about how we refer to ourselves and others. Am I a peer, a patient, a person, a client, an individual, a consumer, and so on.  I have personally observed individuals from different groups who have fundamentally the same agendas walk away from discussions over a lack of a common language. It’s as if we have been traumatized by the words traditionally used to describe us and our extraordinary experiences. But what we fail to remember is that language only limits us if we allow it to. It’s a personal decision to remain within the boundaries of a label.

So, someone like me, who doesn’t care about language as long as it is coming from a place of mutual respect gets relegated to the kids table. I say let individuals decide what language works for them. I’m not offended when my psych doctor refers to me as a client or patient or consumer because that’s how he sees me. That’s not how I see myself. His language doesn’t begin to describe all that I am, all that I’ve overcome or all that I will accomplish. I really think we all just need to take a step back and get over ourselves. Why not spend that energy on what’s important, namely, the overall treatment of people struggling to get or regain control over their lives.

After all, most individuals are probably asking themselves the same questions I’m asking. “What if I had done things differently?” “What can I do now to effect change in my life?” “What do I need to do to get where I want to be?” Let’s be radical and focus on helping them find those answers instead of alienating one another with language. Let’s not get so invested in our camp that we miss the mark. How about we try to avoid the mistakes that have been made in the past by our “do-gooder” ancestors and maintain a curious mind. Let’s assume the best of one another regardless of the language we use and be about the business of empowering one another to live our best possible lives.

dear doctor...

Today I was thinking how I would approach a psychiatrist if I didn’t have a good working relationship with him or her. This is what I came up with.

Dear Psych Doctor,

It’s my understanding that you have spent many years in college learning theories about how the brain works, theories about jumbles of symptoms and the categories that encapsulate them. You are undoubtedly an expert on theories about how to lessen the symptoms of mental illness. I respect where you are coming from. I recognize that you are less concerned with how these symptoms impact the daily living for people struggling with them. As I understand things, you are more concerned with reducing the existence of these symptoms. The impact of these experiences to hour way of thinking is enter left go the therapists, social workers, peer specialists, and do on.

Sometimes I wonder though if this kind of compartmentalization of the healing process might be counter intuitive. I mean, I know how a person’s symptoms impact the quality of their life could play a significant role in how those symptoms are treated. So, for example, if I am dealing with the debilitation effects of major depression and one aspect of it is related to my obesity, then it doesn’t make a lot of sense to prescribe me an antidepressant that causes significant weight gain. Yes, hypothetically I could exercise regularly and eat well to counter the effects of the antidepressant, but how likely am I to do that if my pattern is to sleep 12+ hours a day and eat carbohydrates and sugar?

I also recognize and respect that there are times when you are tasked with complex responsibility to bring a person out of a dangerous place of crisis into a more level place of stabilization. I know that there are times when this is a matter of life a death for the people you work with. As a person who has been diagnosed with a mental illness I have been in that predicament. However, once stable how long should that level of care be maintained? At what point should people be supported in moving past crisis and back to living, back to thriving? Who should broach the subject of pulling back on the meds? When do we start the conversation about adjusting the dosage to fit the situation and address the trigger of the crisis?

Of equal importance, who is responsible for educating your clients that they have a say in their treatment? Who is responsible for teaching them how to respectfully talk with you about what they want for their lives and how what you do with them impacts their life goals. Do you tell them they have a choice of co you simply write them a script, check for medication compliance and send them on their way? Do they have time to ask questions or process what you’ve gold them of are they ushered away after 45 minutes of medical interrogation where you type their responses into an electronic chart rarely looking up at them?

What I’m getting at is, that as a client of mental health services and as a peer specialist in the mental health community I see a gap in services. This gap has to do with underutilized opportunities. In this field we can actually assist individuals in transforming their lives into something extraordinary. We work with people who have lost hope and purpose. Often they have lost choice. They are told where they can live, what they can accomplish and discouraged from living a life with purpose. 

We have the chance to empower them to live their one and only life exactly the way they want go. So I say let’s make the most of the time we spend with them. Even if it is only 15 minutes every 30 day lets beef up that 45 minutes and make it meaningful. Let’s look people in the eye. Let’s put a face to that name. Let’s identify one trait that makes each person unique so that they are more than a medical chart filled with forms, demographics, problems, etc. We are do-gooders, why not embrace that? Together we can have a great impact on the lives of the people we serve. We just have to adjust our thinking and remember that we are here for service to others. We need to remember why we got into this field in the first place, tap into the ideals that sparked the fire in us to want to help, to want to empower, to want to serve.

but you don't seem crazy!

Transparency is a double edged sword. Once a person comes out as having a mental health “challenge” or “difference” or “illness,” there is no going back. There is no hiding behind descriptions like eccentric or quirky. People will judge you and place you in a box that limits you to your diagnosis. Even if never spoken aloud, there are some who will always think “Well, you know, she’s a schizophrenic.”  So that is a very real risk we take when we acknowledge publicly our challenges with a disorder of the brain. And to be sure there is a double standard because no one ever says “Well, you know he’s a diabetic or he has irritable bowel syndrome and that’s why he thinks that way.”

People have told me that I am unique for someone with a diagnosis of mental illness. I didn’t hear this until I started going public with it. For a long time only my family and a few close friends knew. But then I decided to become a peer specialist and the cat was out of the bag. So, why am I unique? Well, clinicians have labeled me “high functioning” versus “low functioning.”  I’m not okay with those terms. They are divisive like the terms “educated Black woman” or “urbanite.” Why can’t we just be people? Maybe it’s because of the stereotypes that are perpetuated by the media, but many picture people with schizophrenia as living under bridges, poorly groomed and talking to themselves. People who live with mental illness live in a variety of circumstances. We are not the convenient two dimensional characters you see in movies and televisions shows. We are not all violent and a threat to society. We do not all need to be locked away or warehoused. We are just people.

This stereotyping doesn’t just occur outside of the peer community. There is in fact an internalized stigma within the peer community that is rarely discussed. The response I get from the peers I work with when I disclose is priceless. When I first meet them, I tell that that I am a peer specialist and the role peer specialists can play in the recovery of an individual. I tell them that I too have a diagnosis. That’s when their ears perk up and they want to know what I’ve got. When I tell them, the first thing they say is “But you don’t look crazy.” Believe it or not this is a good thing because I have just challenged their stereotype of what it means to have a mental illness. I have just challenged their image of what a person with schizophrenia should act like. I have broken down a wall. It’s doubly awesome if the person has schizophrenia too, because my disclosure plants a seed in them for what is possible.

Apparently I am also unique because I am transparent. Not everyone goes around disclosing their diagnosis. In my cultural community we have a tradition of not “claiming” adversity or in this case a diagnosis. And I don’t claim schizophrenia, but I respect and acknowledge its place in my life. After all, I’ve tried ignoring it and that got me hospitalized, jobless and almost homeless. So, now I have a healthy respect for it and give it the attention it needs so that it does not stop me from living a life of my choosing.

I just don’t feel the need to hide this part of my life from anyone. Don’t get me wrong, I don’t walk around with a t-shirt on that says look at me I’m mentally ill. However, I will disclose at the drop of a hat if necessary. What I mean is, there are times when my disclosure is not about me getting something off my chest, it’s about educating someone; it’s about fighting stigma. When I meet people in any area of my life and s sideways comment about people with mental illness comes up, I have been known to say “As a person with schizophrenia, that hasn’t been my experience.” The whole dynamic of the conversation changes from ignorant gossiping to embarrassment to meaningful dialogues. To be sure it’s awkward, its painful, its uncomfortable, but it’s necessary if we are going to change the way we think and communicate about mental illness.

This process of educating people is not new to me. It reminds me of my time in college in western New York in the late 1980’s. I went to a small state college in a small college town that was very unfriendly to African Americans. It was culture shock for me. I was naïve and thought that racism was something that happened before I was born. I learned pretty quickly that it was alive and well in the hearts and minds of my white brothers and sisters. So, I found myself having to help them unlearn some heinous untruths about me and my people. It was (and is) awkward, painful, embarrassing, and uncomfortable-but necessary for meaningful dialogue.

These dialogues about mental illness (and race) are not easy. They are not for the faint of heart. These conversations are for those of us who refuse to live in the shadows; for those of us who believe we have the right to thrive in this world just like everyone else. Don’t let the media fool you, don’t be discouraged by the way we are portrayed in the news. We really are trailblazers. Every time we get up and live our lives out loud we are destroying stereotypes and burying stigmas.  

creativity & madness

I don’t know what the relationship is between creativity and mental illness. I can only speak from my experience. What I do know is that I have been diagnosed more than once with a mental illness and I have always been very creative. Visual art and creative writing have been my refuge, my saving grace and early on the only way I knew how to communicate with my higher power. My creative endeavors have given me insight and self-awareness that no therapy has every come close to tapping into.

As a young child in the 70’s I drew big breasted women with afros, hoop earrings, bell bottom pants and a-line dresses. I drew what I knew. I drew triangular houses with chimneys and cookie cutter apple trees- though I’m not sure I had every actually seen a real apple tree. Nonetheless, I colored in brown trunks, green leaves and red circles. I made up complicated narratives that cast me as a miniature person, about the size of a mouse, in an oversized world of giants. In my world there was always at least one imaginary friend who I openly talked to incessantly.

Growing up on the eastside of Buffalo, New York on the outskirts of an area called the “fruit belt” provided me with a lot of source material. As I moved into my preteen years, I had come to be known in my family as the “sensitive” one-code word for “troubled.” But the effects of that label and the subsequent treatment were softened by the fact that I had art in my life. I had an escape. So at the age of 12 I knew this art thing was important and I knew I needed a teacher. My school art teachers had unabashedly encouraged me to find a new hobby as they had no confidence in my abilities. I found an awesome teacher in an unlikely and amazing place.

There was a unique community art school in the fruit belt called MollyOlga Neighborhood Art Classes. It was founded in 1959 by my teacher of 10 years Molly Bethel and it provided free classes in painting, drawing, photography, sculpture, clay, etc. for all ages. I met the most eclectic group of artists there of all ages and races. This was unique because Buffalo was and is still a very segregated city. E.B. was one of the painters I met there who was about ten years older than me. He was something of mystic and always had a wisdom nugget for me when we saw each other. And his laugh was contagious, he always had some silly observation for me to chew on. An extremely talented and self-directed artist he would easily have been labeled as having schizophrenia by my colleagues today.

Then there was S.R. She was multi-talented, could move so easily from painting to clay to photography and produce beautiful works of art. She literally could do it all and had incredible business savvy to boot. She was my friend and my hero. S.R. had an explosive personality and her mood could turn on a dime. She lived and loved passionately. You could be sure that if she was your friend, she was your friend for life. Several of my friends at MollyOlga struggled with extraordinary experiences like paranoia, fear, uncommon beliefs, voices, visions, vivid dreams, etc. and they were sometimes expressed through their art. Back then I didn’t have a language to describe their struggles. And if I am to tell the whole story, there was a great deal of self-medication going on through the use of alcohol and cannabis. I didn’t judge them then and I don’t judge them now. They did the best they could with what they had, but their choices took a toll on them and many are not here today.

MollyOlga was a true to life melting pot of multi-generational and racially diverse people who were beautiful, strange, talented and loving. They were ride or die friends who would give you their last if you needed it. I could not have ended up in a more nurturing environment. It was exactly where a “troubled” creative person could grow, learn and thrive. It was a safe haven, a judgment free zone akin to the atmosphere of today’s peer run wellness centers in Georgia.

Truth be told, I had some uncommon beliefs about my art. There were times growing up when I thought I had a special relationship with Vincent van Gogh. This was long before I was diagnosed, before I began to understand that I experienced things that others didn’t and before I knew that people thought that van Gogh was crazy. I just thought we were kindred spirits tortured by our deep thoughts, intense emotions, and compulsion to make art. Contemplating his challenges back then as a teenager I earnestly wished I could have lived when he lived. I was convinced that I could have comforted him and shown him another way. Even then I was thinking like a peer specialist.

Today I have a hard time describing how my mental illness has played into my art making and vice versa. I guess I just know that it has. More often than not my art making process is like a delusion that I totally buy into and act on until the realization that it isn’t real to anyone else hits me, then I stop. When I stop believing, the painting is finished and I move on to the next piece of art work. So, I often can’t explain what my paintings are about. I just don’t know or remember. I can talk to you about color and composition, about texture and line quality, even about tension and dynamic movement. However, the narrative is left up to the viewer. So, the question becomes, is this a product of a creative process or psychosis? I just don’t know and frankly, it doesn’t matter to me. What does matter is that I keep making paintings because it feeds my spirit and keeps me on balance.

  

us vs. them?

As quiet as it is kept, there is a tenuous alliance between the peer and clinical communities. I’ve observed a snarky little attitude of us versus them. This doesn’t make a lot of sense to me, a peer living on both worlds, because I believe our goals are the same. To be sure, we go about it differently, but I firmly believe our ultimate goal is to empower, engage and support the people we serve. We are both committed to service to others.

It seems there is confusion and ignorance on the part of clinicians about what peers do with the people we work with. Likewise, there is a culture of distrust of the clinical community by peers. This distrust appears to me to stem from first hand experience of peer specialists as clients of clinicians. Just about everyone I know in the peer community has a horror story about their treatment in the system by clinicians and mental health workers.

Although these accounts of mistreatment, disregard, and excessive force are in and of themselves traumatic, I don’t think they are the rule of thumb. As I have said in past posts, people who choose to assist those of us with mental health differences are “do-gooders.” They have good intentions. I know this because I spend 40 hours a week with them as a peer specialists and several hours a month with them as a client. I simply don’t believe that clinicians set out to harm or re-traumatize their clients. Although, I know that it has and still happens.

Please don’t misunderstand me, I know there have been too many instances of forced treatments, restraints, seclusion, and over medication. What I’m saying is that, as damaging as these actions have been and are, I don’t believe they are a product of malice intent. I think sometimes clinicians overreact and are zealous. From my experience and from what I have observed, I believe individually they want to help. Many times they do help.

The confusion and distrust that clinicians sometimes have for peer specialists stems from ignorance of what exactly we do. We are not babysitters. We don’t coddle other peers. We’re not even friends to the peers we work with on a professional level. We are role models of wellness and recovery. We teach, encourage and empower. We a living examples of what it means to thrive with a metal health diagnosis. We are the poster children for a life focused on wellness, not illness. This is a powerful reality because we are living breathing proof that the stigma of mental illness is based in untruths. Our existence is proof that the stereotypes are not real. We are proof that it is possible to live a life of one’s choosing and have a mental health diagnosis.

So, I think the solution to the ignorance and distrust is dialogue. We need to come together regularly and have some meaningful conversations about what we are trying to do and how we are trying to do it. And, I think this is happening on a small scale. However, there is a needs for forums that give us an opportunity to come together and compare notes. Traditional medicine and therapies work for many. I’d like to learn why and how from the horse’s mouth. Peer support works but how and why? It would be awesome if we could take the best of both worlds and combine them to support the people we are trying to assist in taking back their lives after a crisis. As it stands, peer specialist do their thing and clinicians do their thing, but there is little intentional collaboration.

In a perfect world, I envision a world where the two come together in a more deliberate manner to offer services. The sense I get is that this is happening almost accidentally, but not intentionally. This needed collaboration is not yet a part of the institutional culture of organizations.

I welcome your feedback and experiences. Weigh in on this and tell me what you think.

the power of insight

In my work as a peer specialist I talk a lot about the power of insight in recovery. Many times I have launched into an awe inspiring sermon on how great insight is because it can move your recovery forward by leaps and bounds. Then I realize by the glazed look in my client’s eyes that they have no idea what I’m talking about. It’s a challenge I’m working on-thinking that everyone sees things from my world view, is familiar with recovery lingo, and relates to their illness the same way I do.

Insight for me is about acceptance of and relationship with my illness. Coming to terms with the fact that this jumble of experiences I go through are not going away and are real was the turning point for me. To be sure, I so wanted some things to go away, but in truth, there were some experiences that were comforting. There were some experiences that were familiar and even helpful. Like the period when my voices were like wise mentors giving me sage advice about this or that. Then one day the advice went away and was replaced by a barrage of mundane conversations between people I didn’t know. It was maddening because they weren’t even talking to me.

My understanding of insight has been tied directly to my acceptance of my reality that I live with a variety of symptoms and experiences commonly encapsulated by the term schizophrenia. So even though I would never refer to myself as a schizophrenic, I do say when it comes up that I have schizophrenia. There’s a difference. One is an identity and the latter is one aspect of an identity. So, as I’ve stated in previous posts, I am more than this diagnosis. I am mother, healthcare worker, sister, artist, friend, etc.

Insight for me has also been the process of becoming more familiar with my mental illness so that it doesn’t interfere with my ability to live a life of my choosing. It has meant taking a hard look at my warning signs, my triggers, and the kinds of behaviors that I exhibit when things are not going well. I’ve had to think critically about what I alone can do to lessen the negative effects of these behaviors on my life and on my relationship with my supporters.

So how does having insight into a mental health difference further one’s recovery? Insight demystifies our experiences and takes away the painful sting of a diagnosis of mental illness. Insight reduces fear and shame by giving us permission to integrate these experiences, feelings, thoughts and behaviors into our whole being. As our insight deepens, we become for fully integrated beings. We give ourselves permission to be whole. And what are some ways we can cultivate insight in ourselves and the people we serve? There are many strategies. At their core is the state of curiosity. Being curious about who we really are, our authentic selves, and what makes us tick is essential to meaningful insight. We can use creative writing, visual art, and meditation to find out more about ourselves. We can use movement through dance or regular exercise. Then there is the art of touch through massage. We just need to be willing to try new things to figure out what works for us.

Without insight, which in my mind is the opposite of denial, it is impossible to get a handle on our mental health. I mean if we don’t acknowledge that there is something actually going on how can we address it? Acknowledging is not the same as claiming it. Acknowledging it does not mean we allow it to define us. It simply means we accept this one aspect of ourselves and give it the attention it needs. And we do this so that we can be the best version of ourselves that is possible. 

self determination

There is a lot of talk about self-determination and being self-directed in the peer community.  I don’t believe self-determination can be taught. Self-determination is the process by which and motivation to take control of one’s life. I believe it can be nurtured and encouraged by others, but ultimately it comes from within. I also believe that everyone has the capacity to develop a strong sense of self-determination under the right circumstances. Those circumstances include being surrounded by people who believe in one’s ability to direct one’s life with the strengths and talents inherent to them. Given the right opportunities for growth, everyone can develop self-determination.

On the other hand, I do believe that self-direction can be taught. Self-direction is action that comes directly from insight into one’s strengths, talents and abilities. So as a peer specialist I am tasked with the job of assisting other peers in identifying and honoring their strengths. If a peer has clear insight into what they can accomplish with the resources they have then they can direct their life in any way they choose.

In the most practical sense, I never do anything for a peer that they can do for themselves. If a peer needs literacy skills I may research agencies, but they do the foot work of calling to get information and making appointments. If a peer has a goal of going back to college or getting their GED, then I work with them to create an action plan with the steps necessary to make it happen. In the process of “making it happen” people’s self-determination is nurtured and strengthened. As they get to know what they can accomplish their confidence grows and they become more self-sufficient.

While working with people with mental health differences this nurturing can be a challenge on many fronts. Typically, people who live with schizophrenia, bipolar disorder, major depression, anxiety, etc. are told by well-meaning and genuinely concerned supporters that they can’t do much for themselves. They are often times treated like they are fragile and any challenges will send them spiraling back to the hospital. They too often are told that they can’t manage their money, make decisions, live on their own or even choose what they do in their leisure time.

Peers are told they will never work a job, have healthy satisfying family lives or really ever contribute anything worthwhile to their communities. These harmful limitations are not imposed out of malice. These determinations are made by people who care. They are made by do-gooders like social workers, doctors, day program leaders, and family members. These determinations are well intended, but inaccurate and stifling. After hearing what a person can’t do over and over again, a person will come to believe it and sadly expect everyone they come in contact with to do something for them. This may look like an attitude of entitlement, but it is not. It is learned helplessness.

To be sure, living with a mental health difference can be challenging and even limit the kinds of things we can do. For example, I know with my own mental health issues I can’t work a 50 hour a week job. I won’t work nights and weekends to get the job done. I can however, work a solid 40 hours a week and be fully present and effective during that 40 hours. Everyone, mental difference or not, has limitations. The point is, no one should be told what they can or can’t accomplish. Life is about self discovery, figuring out what is and isn’t possible. No one should stifle this process for anyone else. By the same token, no one should impose unrealistic expectations on others. People can do what they do and it’s only our love, compassion and support that will help them catapult themselves into places they never thought they could go.

Self-determination is personal. No one can tell another what direction they can or should go in. No one else can do that for us. There is no timeline either. Everyone moves at their own pace. Those of us who support peers in moving forward know all too well that sometimes we have to “hold the hope” for others. We can see the potential in them for growth, but until they see it for themselves and embrace it nothing will happen. So we hold the hope for them until they can hold it for themselves. 

extraordinary experiences

Many people live with extraordinary experiences like voices, visions and uncommon beliefs. The clinical world uses words like hallucinations and delusions to describe these experiences and to assign meaning to them. The psychiatric community assumes that the most appropriate response to these experiences is to medicate them into nonexistence and even more damaging, discount the realness of these experiences to people who live with them.

What’s the alternative? After all, who wans to go around seeing, hearing and believing things that others don’t? The alternative is compassion. For those living day to day with voices and visions they are real and have meaning beyond the label of mental illness. But how are they real? Who gets to assign meaning?

I dare to say that these experiences are real. If a person who is hearing a voice that tells them that someone is out to kill them that person becomes afraid. The fear is real. To invalidate that fear is to act without empathy and compassion. So what if no one is actually out to kill this person. The sense of helplessness, desperation, and agony are real. So why not address the trepidation instead of getting bogged down with the need to correct that person’s perceptions?

If a person believes they are Jesus Christ and is responsible for saving every living person on the planet from their sins, the sense of responsibility for others is real. Instead of confronting the person with statements that invalidate their feelings, why not address how overwhelmed they feel by their perceived responsibility? If someone has a reoccurring vision of the end of the world and believes these visions are messages from God, why not address their anxiety about the state of our world and their future?

What about meaning? Who gets to decide what these experiences mean? I say the person going through it gets to make meaning of it. So many factors need to be considered like culture, race, gender, family dynamics, ethnic traditions, etc. When I was a child I spent a lot of time with my grandmother. She helped my mother raise me and my siblings. She believed that dreams could teach the dreamer things about their life and predict future events. We had a very specific dream vocabulary in my family. My dreams have always been vivid and full of symbols. I choose to believe what my grandmother believed. I choose to take guidance from my dreams and maintain a bond with my grandmother who is now my ancestor.

I choose. What harm is there in the meaning I make of it so long as it does not interfere with me living a life of my choosing? What harm can come from the meaning I assign to it as long as I don’t impose it on others or trample on the beliefs and rights of others?

There is an organization that supports this way of thinking. It’s the Hearing Voices Network USA. I support this organization by serving on its Board and facilitating support groups. So often when people try to reach out to doctors, family members and other supporters, they are met with worry. They are usually asked if they’ve taken their meds and the assumption is that they want the experiences to go away. Hearing Voices Network USA support groups don’t make any assumptions. What you will find at these meetings is compassion and validation. Meetings are weekly for about an hour in a safe and nurturing environment. Currently there is one group in Georgia that meets every Wednesday from 5-6 pm at the Decatur Peer Support Wellness and Respite Center. Anyone who is 18 or older can attend. Contact this writer for more information. 

triggers

It seems like everyone, whether in the recovery movement or not, throws around the term “trigger.” It’s as if it were a catch-all phrase for all things that irritate or annoy us. But what does it really mean for people living with mental health differences? Exactly what are triggers?

From my experience and the experiences relayed to me by other peers, at their core triggers are the catalyst for distressing feelings and thoughts. Triggers are events, conversations, actions, smells, physical sensations, places, etc. that cause a negative emotion, thought or response that overwhelms one’s coping mechanisms. These catalysts for distress are most commonly associated with past trauma. Something awful happened and a trigger takes a person back to that time and space.

How do we identify our triggers? The best way I have found to identify what triggers me is to analyze my response after the fact; especially when my response seemed disproportionately high. So, once things have settled back down and I can look objectively at the situation, I break the experience down. It is difficult for most people to be logical and rational when they are being triggered. In the moment, it is almost impossible for people to say this or that is triggering me. After the fact, I can ask myself what happened just before or leading up to the distressing response. What sensations did I go through preceding the reaction? What were my thoughts and feelings?

What can we do to take care of ourselves when we are triggered? I have developed a toolbox of affirmations that I use when I find myself being transported back to darker days. I worked on these very personal mantras at a time when I was doing well and stored them away for the tough times. One mantra is “I’m okay, I’m safe, I’m an adult.” This helps me stay in the present instead of going back to the time of the trauma when I felt helpless. The key is to remain in the present moment. Another way to stay present is to rely on your senses. You can use your sense of smell by wearing a scented body oil on your wrists and smelling them when you feel unsafe. You can use your sense of touch by rubbing your hands together until they are warm and focusing on that sensation. The easiest solution is to just remove yourself from the situation that is triggering you.

What do we do when our triggers cause us so much distress that we behave in what others view as inappropriate ways? How do we handle the aftermath? As I said, when we are being triggered we are probably not in a position to communicate very well what is happening. Our coping mechanisms are being overwhelmed and we are likely feeling out of control. That being said we need a plan in place to deal with these inevitable events. We need to let our supporters know in advance what might take us to these distressing places. And just as important, we need to have a plan to make amends if our words or behavior negatively affects others. It’s not all about us. We have a responsibility to the people we come in contact with to apologize and to the best of our ability explain ourselves. Having triggers is not permission to act out without regard to how our actions affect others.

So, if we are compassionate with ourselves and honest with others we can get through these challenging experiences. A tool I have learned as a peer specialist is the formula “I see, I feel, I need.” If we can stay present enough when being triggered we can use this formula to communicate on the most basic level without blaming or attacking others. After all, for the most part, people don’t set out to push our buttons. Stating what you see, acknowledging how you feel about it and asserting what you need are healthy ways of moving through these kinds of experiences.

Finally, I think if we can keep in mind that triggers have their base in past traumatic events, then we can be kind to ourselves and others when situations occur. I think if we can avoid taking the actions of others personally when we are triggered we have a better chance of maintaining and even deepening our relationships. The more we understand ourselves and others, understand what makes us tick, the better we will get along. 

no willy-nilly life

As a peer specialist I struggle with the desire to assist my fellow peers in overcoming their mental health challenges and the compulsion to fix their problems for them. I think this internal conflict comes with the territory. Ultimately I stand firm on the side of supporting peers and empowering them to make their own decisions about their recovery. In the final analysis, they are the experts on themselves and what they need to recover.

I think a lot about the rights of people living with mental health challenges as I balance my desire to support with my compulsion to fix. As I traverse this fine line I find that most of the people I work with don’t know their rights and have not decided what their responsibilities are. For example, most people don’t know they have a right to control their recovery process and treatment. For so long they’ve been told to take their medicine, see their psychiatrist, see their therapist, and so on. However, rarely has anyone asked them what’s working for them or what direction they want to take. We have a right to work with healthcare providers who ask these questions. We have a right to fair treatment in all areas of our lives. We have the right to full lives absent of discrimination and the debilitating effects of stigma.

People who live with mental health differences have a right to be treated with dignity and respect. This can be difficult for some to put into practice especially when the person they are dealing with is experiencing voices, or visions of some other sensation that has them behaving in socially inappropriate ways. Regardless of these behaviors everyone deserves to be treated with compassion, dignity, and respect. We have a right to love and laughter; to make mistakes and pick ourselves back up. We have a right to have healthy leisure lives that recharge us and energize us so we can better handle the dark days. It can’t all be gloom and doom otherwise what is the point?

We who strive to thrive through these unique and challenging experiences have a right to have our voices heard and responded to with open mindedness and empathy. We have a right to asks questions about the diagnosis we are given and the treatment recommended for us.  We have a right to know our options. We even have the right to refuse any treatment we don’t feel comfortable with. Many of us have been taught that we have to do what the doctors tell us. Rather than assert our desires many of us just stop taking the meds and are labeled noncompliant.

The peers I work with have never been told they have a say in who is involved in their care. They don’t know that they can fire their therapist or psychiatrist. We who are learning to manage our differences have a right to seek out alternative care if that’s what works for us. By documenting our wants and preferences in Advanced Directives and WRAP plans we even have the right to choose what hospitals we use, what respite centers we stay at and who can support us in dark times. If things start to break down, these documents are our voice.

Thanks to HIPAA we get to choose who we disclose our illness to and we get to assign meaning to our experiences. What I mean is, we get to make meaning of what clinicians call symptoms. What a mental health care provider might call auditory hallucinations, we may decide to call the experience the voice of our elders. We decide. And really, who care how we describe these experiences as long as they don’t interfere with our ability to live a life of our choosing. Other laws give us the right to live in safe affordable housing-though it is important to note that there is a terrible shortage of these spaces.

So I have talked a little about rights and only touched on a few. But what about our responsibilities? What are we obliged to do regarding our mental health challenges? Well it’s personal. And because it’s personal, I can only speak to my experience. I feel I have a responsibility to myself and my supporters to do everything in my power to live in wellness instead of illness. That means I do everything within my power on a daily basis to be the best that I can be to live the life I want to live. For me this in means the clinical stuff like meds and doctor appointments, but it also means I educate myself about my options. I take the pursuit of self-awareness very seriously asking myself periodically “what’s working?” or “what do I need to pay attention to?” I don’t isolate. To live in wellness I exercise, eat right, pray and ask for help when I need it. Like I said, it’s personal.

Everyone’s experience is different. But what remains the same across the board is our responsibility to ourselves and the people who love us to have a plan. In order to live lives of wellness we must know and act on our rights and responsibilities. We can’t thrive by living life all willy-nilly. We must have a plan that we can rely on that leads to wellness.  

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bouncing back

Resilience is basically the ability to bounce back from adversity and challenge; learning from your experiences and applying your new found knowledge to future challenges. Resilience is the recognition that one’s coping skills have been overwhelmed by one’s circumstances or symptoms. When this happens its necessary to seek our new or different skills to regain stability. Resilience for me has meant remembering in the midst of chaos that relapse is a part of the process; that I’ve been there before and I can regain control of my life.

The act of bouncing back comes after things start to breakdown. The breakdown for me in the past has been when my mind stops responding well to my medications and I start to decompensate. That means I stop being able to take care of daily responsibilities, my memory starts to worsen, I don’t want to shower, go to work, etc. Resilience begins with the recognition that I am spiraling down a dangerous path. That takes a certain level of insight that everyone doesn’t have and that’s when community support becomes essential.

When insight isn’t there, it takes family, friends, coworkers, etc. to say “I’m concerned about you, you don’t seem yourself.” It’s important to note here that the way that concern is expressed is very important. For example, it’s not helpful to say things like “You don’t seem like you have taken your meds” or “You are trippin’ have you taken your meds?” Concern expressed with love and respect are what’s needed.

So, for me the journey back to stability means communicating with my health care provider, going through the arduous process of find a new medication, and taking time out to recover. Relapse is traumatic and disruptive and requires time to regenerate. When my symptoms have abated and I can feel a true range of emotions, I know I’m on my way back to stability. When I can take pleasure in activities that I have always enjoyed and when brushing my teeth does not feel like a chore, I know I am back on track to thriving and not just surviving.

Resilience is a relearning process. It is a process of remembering as well. It is the active living of the mantra “I’ve been here before, I can handle this.” When we are doing well we have to support our ability to bounce back by establishing healthy supports with people we trust and amassing tools that will alert us that something in our life needs our attention. Having a WRAP plan is perfect for this. It outlines our triggers and our symptoms for the people we love so that they can support us the way we want to be supported when things start to fall apart. And don’t believe the hype, no matter how far we have come in our recovery, relapse is always a possibility.

The time immediately following a relapse when we are feeling more like our genuine selves, is the time when we need to put in some work. This is the time to be self-reflective and ask oneself some important questions. We need to be like mental health detectives as ask ourselves what caused the relapse, what could have been in place to prevent it, what can I do to avoid this in the future? This is the time when we have to make some tough decisions. Was it a person, place or thing that caused the relapse and do any of these elements need to be eliminated from our life? Our recovery has to be more important than any person, place or thing. It’s too important to give up for anything. For some of us it is a matter of life and death.

Resilience requires clarity of thought and determination. These are skills, skills that everyone and learn and cultivate with the right support. Being able to bounce back takes planning and having a system in place to manage adversity before the fact. I encourage everyone I know to love themselves and the life they have worked for enough to put that plan in place. 

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.