The use of labels to describe varied mental states is controversial and in many cases detrimental to the individual being labeled. One issue is that people don’t fit neatly within the confines of the imposed labels. To borrow from the peer movement, “we are more than our diagnoses.” And this is absolutely true. I am more than my label of schizophrenia and publicly admitting I have this diagnosis places a whole other set of labels one me. Labels like “disabled,” “limited,” and in need of “accommodations” aren’t pleasant. They don’t instill hope for the future. Those are the politically correct ones. You can, I’m sure, imagine the other not so flattering ones. It goes on and on.
Some of my colleagues are totally against labels. Some believe that self-identifying with any label causes self-stigmatization. And I agree to a certain extent. I agree in the case when an individual allows that label to limit them in any capacity whatsoever; whether its employment, relationships, family, life goals, etc.---then yes it’s a problem.
However, what if a label is necessary for an individual’s recovery journey? It was for my recovery. Prior to getting my diagnosis, I was floundering. I had no idea what was up or down. My diagnosis explained a lot for me and it helped me secure Social Security Disability benefits that I needed to survive. Those benefits sustained my son and I while I couldn’t work. Without the label there would have been no benefits and without the benefits I have no idea how I would have lived. This is the case for many individuals.
So looking beyond basic survival, there is also perception. Perception is crucial. Certain negative perceptions fuel stigma and stigma kills. I live in the clinical world and the peer world. Every day I see clinicians going about their work trying to make a difference in the lives of the people they work with. Their hearts are in the right place, even if their tactics are not always “helpful.” I see peers challenged to stay empowered and empower others.
As a peer specialist I use my label of schizophrenia to shatter stigma. I observe well-intentioned clinicians talk about the “schizophrenics” as if they are a monolithic group with one set of behaviors and characteristics and I shatter their perceptions. I shatter their presumption that everyone with that label is unemployable, unable to live on their own, unable to raise their children, unable to make decisions about their medical treatment etc. by just living my life transparently.
The only way to make a profound and personal impact on these clinicians is to self-identify as a person with the label of mental illness. It’s their language and I use it to make an impact on them that I hope will affect their treatment of others like me.
Self-identifying as a person with a serious persistent mental illness also helps me empower the peers I support; especially those who have just received a diagnosis and are trying to come to terms with it. It’s daunting to hear a doctor say you’ve got this or that and its forever. So when they talk with someone with the same label who is doing well, living life on their own terms, the result is hope. And hope is the cornerstone to recovery. That’s my goal in doing the kind of work that I do. Namely, to instill hope, fight stigma, to empower and to ultimately create a broad space for us all to live our lives on our terms.
Noise in My Head
Thriving with a mental illness.
Saturday, January 6, 2018
Monday, October 23, 2017
suffering on purpose
I’ve talked previously about suffering when an individual
has disturbing or extraordinary experiences that are sometimes labeled mental
illness. Often times these experiences can bring about suffering in themselves
or at the hands of others in the medical community. Whether the suffering comes
from within or without, the fact of the matter is the suffering and its after
effects are real. They are real and have very real consequences.
In this post, I want to borrow from the mindfulness community
and my own faith tradition and talk a bit about acceptance of suffering. From
my experience my greatest and most damaging suffering has come from wanting my circumstances
to be somehow different from what they were. I have suffered because I wanted
more money, more status, more possessions, more beauty, and in recent years I’ve
suffered because I’ve wanted some of my experiences to stop.
It has been in this incessant wanting that I have suffered
the most. In the midst of my suffering, the tears, the episodes of traumatic
fear, the distressing voices I would call on my Higher Power to take it all
away. It never occurred to me to look for meaning in those experiences. It
never occurred to me that there was a reason I was having these experiences. It
never occurred to me that these were opportunities for real and meaningful
growth.
So, over a span of time two things happened for me. An
awesome healer suggested I stop fighting against my experiences and really be
present for them. She proposed I sit in them and listen to what they were
trying to tell me. She suggested I accept them as a part of me versus trying to
exorcise them as some sort of external entity. Radical thinking. The second
thing that happened was that through the teachings at my church, I came to see
that Jesus went through a similar experience. I came to see that He suffered
contemplating dying by crucifixion so much so that He sweat blood. And I learned
that when He accepted His fate he experienced peace, courage, and strength.
I’ve had many labels over the course of my life, many
struggles as we all have and suffered greatly. However, what I have learned
that has transformed the quality of my life, has given me peace, courage and
strength in the midst of suffering is acceptance. Not blind acceptance, but
acceptance with the faith that there is always meaning in my suffering; that
there is always something to be learned, an opportunity for growth.
Instead of masking my suffering with food, drugs, or
loveless relationships I embrace the lessons. I use the pain to learn more
about myself, my strength, my community and I use the pain to empower myself
and others. I use that suffering to connect with others to ease isolation, to
humanize extraordinary experiences and to foster hope. Suffering on the surface
appears futile, but it has a purpose and the potential to heal beyond our
expectations.
Monday, July 31, 2017
labor pains
When I think about recovery I think about the night I gave
birth to my son Joseph. Yes it was painful, but it was also exciting because I
was living in the highest state of expectancy of my life. I was bringing forth
someone brand new that had never before existed.
Recovery is like that. You are becoming something you never
were before. Someone brand new. And like childbirth it can be painful. Recovery
requires growth. It requires taking a broad and deep look at yourself. To live
in recovery you must look at how you talk-do you speak positivity into your
life? You must look at who you spend your time with-are your friends and family
in support of your goals? You must cultivate purpose -do you volunteer or work
in an environment that honors your contributions? You must advocate for your
healthcare-are you working in partnership with hour healthcare workers for the
best possible plan for you? If you can answer yes to these questions then its
smooth sailing for you, but if not, this is where the pain comes in.
If you answered no, then you’re going to have some recovery
labor pains. Recovery got real for me when I took the training to become a
certified peer specialist (CPS). In this two-week training they gave the
participants a button at the start that said “I’m a walking miracle.” At first
I just put it in my purse. It didn’t jive with the language I spoke back then
about myself as someone with a mental health diagnosis. I didn’t have any
positive talk about that so I couldn’t relate. By the end of the training I was
color coordinating my clothes to match that button!
In that training I came to understand that the coping skills
that I had used to thrive and survive made me an expert on me! And the training
I was getting made me a competent peer specialist! Whoa, talk about bringing
forth someone brand new that had never before existed! Those trainers had me
fired up. I left that training with a new idea of who I could be and what I
could do.
When I got home from the training I told everyone who would
listen that I wanted to do what everyone had told me that I would never do. I
wanted to work full time as a CPS. My family cautioned me against it. Some of
my friends warned me that the stress would send me back to the hospital. My co
workers expressed their fears for me. There was tremendous pushback. Labor pains. But the seed had been planted.
It was just a matter of time. And I cried because I knew if I were go grow into
this vision I had for myself I was going to have to part ways with people who
had been my support. I had to create new boundaries with old friends. I
couldn’t share my new goals because they were naysayers. Some relationships
don’t survive recovery. Some relationships don’t survive recovery because when
you take a good look at yourself and change, you force those around you to do
the same.
How do you move forward with this new version of yourself
when your supporters stop supporting you? You realign yourself with people who
are where you want to be. That’s what I did. I kept in touch with the people I
went through the CPS training with. I had to create a new support system. It
was painful but necessary. And all the while I was looking for opportunities
where I could be involved in that reflected my new vision of me.
So now, four years later I’m still working my recovery. Still
going through pains though not as dramatic, establishing new boundaries,
letting people go and welcoming new supporters in.
Sunday, April 16, 2017
romance and recovery
Recovery and romance; where to begin? There’s a lot of
discussion in the peer community about individuals with mental health diagnoses
seeking out and cultivating romantic relationships. One line of thought is that
it’s a risky endeavor to add the stress of managing this kind of relationship
with the challenges of managing a mental illness. Another line of thought
suggests that romantic love can be a source of strength and a natural support
in the journey towards wellness.
I subscribe to the latter point of view. Every healthy
relationship can support recovery. Friendships, family bonds and romantic
partnerships are the emotional artillery needed to live in wellness. Romantic
love provides support on the most intimate levels. There are challenges we can
share with family and friends, however, romantic partnerships create a safe
space for full disclosure and acceptance.
So, in a perfect world, our romantic interests would be
open-minded, compassionate, and non-judgmental. This is ideal right? And this
happens for many of us living with a mental health diagnosis. For many of us
there is someone who is strong enough to be a witness to our successes and setbacks.
Someone who can love us unconditionally and help us stay on track. But, what
about when we are rejected because of our challenges? How do we process being
rejected for something we have very little control over? How do we avoid
feeling damaged and unlovable when confronted with another person’s fear and
prejudice?
In my experience, transparency is the key. Because I am
open and transparent about living with schizophrenia, the stigma loses its
power. Transparency, openly telling one’s recovery and wellness story humanizes
something that most people are terrified by. Let’s face it, most people rely on
the media for facts and the media has a poor track record of portraying
individuals with a mental health diagnosis. So countering these negative stereotypes
with stories of hope and wellness is essential.
What I’m advocating for is disclosure which is highly
personal. For some it’s terrifying because once you let the cat out of the back
there is no turning back. Why do we need to tell the people we encounter we
have a diagnosis? For one, it frees us from fear. For another it allows the
people we meet to make an informed decision about whether they want to interact
with us. For some people, mental illness is a deal breaker. Without disclosure,
this essential part of us becomes a weight around our neck that will drag us
away from wellness.
When do we disclose that we have a diagnosis and are living
in recovery? It’s going to be different for everyone. Most of the time when I
meet someone it comes out pretty early on because it’s an integral part of my
job. Most people outside of the peer community don’t know what a peer
specialist is. So in explaining that, I have to disclose. How I disclose
varies, but I’m usually pretty straight forward. I simply state that I have a
diagnosis and describe what that looks like without burdening the person with
medical jargon.
Some people have responded with curiosity and compassion. Some
have flat out rejected me. In either case, I just keep things moving. There is
someone for everyone. In my opinion, anyone who rejects me based on a medical
diagnosis is not someone I want in my life anyway.
Saturday, February 18, 2017
recovery in action
Recovery is not a passive endeavor. It requires an act of
the will. Recovery doesn’t just happen. It springs from hope, it springs from
desire and it requires purposeful movement to occur.
But how? How does one put the desire to be well, to live in
wellness into action? There are many paths to recovery and they all need a
strategy. To move forward into wellness an individual must have a goal, a
vision for their life. This goal must be to move from position A to position B.
Position A is a place of dissatisfaction. We’re not comfortable in position A, like
square peg in a circle groove. Position B is our vision of wellness; of
wholeness. In position A we must ask ourselves what we want our lives to look
like. We must ask what our day to day existence will be like when we are living
in wellness. The answer to these questions become our roadmap back to the land
of the living.
The answer to these questions for me always came back to my
desire to work full time after living in my illness. I was dissatisfied with
living as a “permanently disabled” person and wanted to move into purposeful,
gainful employment. If I had based this possible shift on the circumstances of
my life at that time, I would have been paralyzed by hopelessness. Not even
those who loved me dearly thought it was possible. Everything in my life
pointed towards spending the rest of my life depending on social security
disability checks to survive.
To move from position A to position B I had to recognize
that full time employment, despite its challenges, was my goal. And I needed to
know why. It wasn’t enough to know that I wanted change; I needed to back it up
with a justification. The answer was self-sufficiency and a sense of purpose.
At my core I had always been a do-gooder and a worker bee. That was who I was,
who I wanted again to be and employment was how I expressed it.
The next step in my journey was to identify what had
already been done to manifest this goal. At that time, it seemed I that I had
done very little, when in fact I had laid the foundation for success. That
foundation was a quiet commitment I had made to myself and my son. I didn’t yet
know how I was going to do this thing, but I was committed to trying. I didn’t
yet know what success would look like either. I had simply planted a seed of
possibility.
To move forward I needed to visualize what success in
achieving this goal would look like for me. I needed to be specific too. I
asked myself “how many hours a week would I work?” and “how money would I need
to live comfortably?” etc. Once I had this new vision for my life, I started
brainstorming specific actions I would need to do to get to my vision. These
too were specific and had time frames that held me accountable. I gave myself
hard deadlines and shared them with my supporters who also held me accountable
for meeting those deadlines.
The next step was to figure out what I would need to
complete these actions. I had to figure out what resources I would need to access
and who I should enlist to help me. I was realistic though, so I also
brainstormed possible barriers to success and a strategy to overcome those
barriers. So, all this soul searching became my game plan for thriving in this
life. It was a turn by turn map to reach my final destination of wellness. The
road was not always straight or well-lit and there were many times when I
feared I had lost my way. When that occurred I went back to my plan and began
again.
There is no cookie cutter formula for recovery. Every
journey is unique. We all don’t get there at the same pace or at the same time.
But the awesome truth is, recovery is not only possible, its real.
Sunday, October 9, 2016
holding the hope
Sometimes it’s frustrating when you see potential in another
person going unrealized. It’s almost like we take the other person’s lack of progress
personally. So, if we can put that frustration, that impatience aside, we can
actually support another’s recovery by holding the hope for them.
After all, it’s difficult to have hope when your circumstances
appear bleak, when you can’t see the light at the end of the tunnel. It’s
difficult to look beyond the immediate crisis when you’ve had multiple
hospitalizations, when you can’t find the right combination of medications to
lessen your symptoms, when your family and friends have written you off. It’s
in these sorrowful moments that hope is essential in powering up one’s
recovery. Hope, like faith, looks beyond the obvious towards the possibilities.
It’s in these moments that hope can be hard to come by.
If you love someone who is struggling with making progress
with their recovery you can help them. You can’t fix them or make their
suffering magically go away. Their journey is their own. However, you can hold
the hope for them. You can be a witness to their struggles and a constant reminder
---like a broken record--- that things can get better. You can highlight for
them their successes no matter how small. You can encourage them to celebrate
their victories when they are feeling defeated. You can enrich their lives and
broaden their perspective by teaching them to honor their progress.
These small gestures have a huge impact on how a person who is
in the midst of adversity views themselves. Your efforts, your compassion, your
kindness will make a difference in the life of another person who is tempted, moment
by moment, to give up and given in. We can support those we love who are
battling with the debilitating effects of a mental health diagnosis by being a consistent
voice of hope. This requires courage and selflessness on our part. We have to
put aside our opinions, out tendencies to judge what we perceive as other’s
lack of motivation and our own desperate fear that they won’t get better. I’m
not talking about enabling another to wallow in misery or to be a martyr for
those we love. I’m talking about looking objectively at your loved one and
making a commitment to their survival no matter how long it takes.
How do you hold the hope for someone you care about in a
practical way? Well, you start from a place of curiosity. You ask a lot of questions
to find out what recovery will look like for the individual. Find out what
wellness looks like for them. Be confident that they have what they need inside
them to live in wellness. Help them to discover their path to recovery by
asking them how life will be better when they feel better. Then plant seeds of
hope by suggesting actions that could get them to where they want to go. Don’t
be deterred by negative push back to your suggestions. Change isn’t easy for
anyone. Just gently push back by reminding them what they said they wanted for
their life.
It won’t happen quickly. You have to have patience with the
process. Everyone goes through recovery at their own pace. The light doesn’t go
on for everyone at the same time. And there will be setbacks. People relapse every
day, but even that can be part of the process.
Being an ally to someone struggling is like being a coach. You
can see possibilities for their life that they can’t yet. You know their
strengths and you have confidence in their abilities. Hold on to that for them
and for yourself. The rewards are beyond measure.
Monday, September 5, 2016
transparency
People like me who live with a mental health diagnosis and go
through a myriad of extraordinary experiences have a unique story to tell. Not
a static biography of days gone by when recovery was just a notion, but a
living, breathing, evolving account of what it means to live with a mental
illness.
Those of us who choose to tell our story publicly do so for
many reasons. First and foremost, I think healing is the desired result of our transparency.
We heal ourselves and are the catalyst for healing for others. When we tell our
story we take the painful sting out of having a diagnosis. The labels lose
their power to marginalize us, to categorize us, to limit our perceptions of
who we are and what we can accomplish. We come, through disclosure, to recognize
that we are more than our illness.
Our openness and willingness to share our experiences with
strangers gives us freedom. We experience the freedom to be our authentic
selves with no limitations. Our transparency dissolves the fear of being found
out. No one can “out” us because we out ourselves. No one can use our lived
experience to shame or silence us.
When I tell my story to those who would listen, I am able to
better put things into perspective. I realize regularly that although I’m not
where I hope to be, I am far from where I was. Looking over the years at the
challenges I’ve faced, I could call myself a survivor. A more accurate label
though, is “thriver” because on a daily basis I choose to move beyond my
psychiatric diagnosis and live a life of my choosing.
On a broader scale, transparency saves lives by fighting
stigma. Stigma is deadly, it kills by discouraging individuals from seeking
help for fear of how they will be perceived. No one wants to be called crazy. Transparency
normalizes our experiences. By accepting our experiences as normal for us, we
normalize the experiences of others and reduce the harmful effects of ignorance.
When we tell our stories with courage and confidence again and again, we stomp
out stigma. We do this through educating people and dispelling myths about what
is means to live with a mental health diagnosis. These acts of courage empower
others to open up and embrace themselves fully. When people who are struggling
to come to terms with their own challenges hear our stories of hope they are emboldened
and given permission to live their lives to the fullest.
The more we talk about it, the more we will understand it and
better equipped to support one another. There are a couple of forums available
for individuals who want to learn to tell their stories. The Georgia Mental
Health Consumer Network has a program called the Respect Institute and NAMI has
a program called In Our Own Voice. Both provide outstanding training and
support in finding opportunities to speak in the community. Compensation for
speaking engagements is also available.
Sunday, August 21, 2016
looking past the crazy
Everything isn’t always about illness. That’s what I think mental
health practitioners miss. The focus is on symptoms as if they exist in a
vacuum and are not a response to trauma. Sometimes looking through or past the
obvious is what is necessary for healing.
What if instead of focusing on medicating a symptom like an
uncommon belief or delusion, we sought out the underlying emotions or core
needs? In the peer community we meet many different people with many different experiences.
Perceptions are as varied as the grains of sand on a beach. I’ve met individuals
who were convinced that they were great historical figures, celebrities, or government
big wigs. As a peer specialist working in a clinical environment it would have
been easy for me to approach them like a clinician and ask about medication
compliance. I could have used psych terms like delusional to describe their
experience and suggested they see a psychiatrist. But that wouldn’t have
addressed what they were really struggling with.
That approach would not address the intense emotion associated
with their beliefs. That approach would dismiss for example the enormous sense
of responsibility for others of a person who believes they are Jesus Christ.
Responding to feelings of being insignificant by asserting that one is Michael
Jackson might seem illogical at first glance, but is it that much different
from inflating one’s accomplishment on a resume or at a job interview? The
desired result is the same, namely, to generate a sense of worth in the eyes of
others. And really, who cares if a person believes they are Gandhi if that
belief does not interfere with their ability to care for themselves or live a
satisfying life?
So, what about when these uncommon beliefs get an individual
into trouble with the law or cause interpersonal conflicts? Psych meds alone aren’t
going to keep a person out of jail or mend a relationship. That’s when assisting
an individual with figuring out the purpose of the uncommon belief is essential.
Say my uncommon belief is that I am a prophet and am obligated to physically
embrace everyone I come in contact with to demonstrate God’s love. It’s easy to
see how this belief could cause me heartache and cause distress for others. One
way to address this isn’t to label me delusional, but rather to address my need
to show God’s love to others. An insightful peer would ask me to explore other
ways of doing this such as volunteering at a soup kitchen or homeless pantry. Finding
another outlet to satisfy the core need of this uncommon belief can be more
effective than upping the dosage of an antipsychotic drug. Who knows how much
more our lives might be enriched by the efforts of this individual.
This approach would take courage and a willingness to look
beyond a diagnosis or jumble of off-putting behaviors. It would require that we
refrain from judging the experiences of others from an illness perspective and just
calling people crazy. This approach would demand that we spend time with individuals
going through these challenging experiences and give more of ourselves in
support. It’s not enough to nod condescendingly to someone expressing an
uncommon belief in the hope that they will stop talking. We need to do more to
assist them in working through their experiences.
Sunday, August 7, 2016
staying connected
I’m really bad about staying connected to people I care about.
It’s not that I’m not interested in their lives, in what’s going on with them,
it just doesn’t cross my mind to call regularly. I know that sounds awful, but
it is a byproduct of living with schizophrenia. The fact is, I love my friends
and family deeply. I wonder about them, worry about them and pray for them
daily. But I do have a hard time staying connected.
There are many reasons why this happens. I just go into a few.
We all have a finite amount of energy to work with. We have to prioritize how we
are going to use that energy to keep our lives moving at a steady manageable
pace. Some things fall by the wayside. Sometimes, I use up my energy managing
my symptoms. This is real talk. Sometimes I use up my mental and physical
energy managing the noise in my head so that I can get through a work day. Many
days I come home and barely have enough energy left to engage with my son. I’m
like a spent battery in need of a recharge.
I always picture it like this. I have a glass full of
water---- that’s my energy. I have to use the contents of my glass to fill
other smaller vessels. Those vessels are work, my son, bills, self-care, and so
on. Like most people I deal with what’s in front of me. Once I’ve used up my
water I’m depleted. Invariably some vessels go unfilled but this is not an
indication of their importance.
Then there are the rarely discussed challenges of schizophrenia
like an inability to enjoy pleasurable activities and social skills deficits.
The clinical world calls these “negative” symptoms like difficulty engaging in
friendly conversation even when prompted to do so. These things, these tools of
connectivity that most take for granted have plagued me my whole life. It’s
only now that they make sense. I am now painfully aware of social cues that I
have just never picked up on that have made me appear aloof or uncaring. Painful
because of the missed opportunities and for the unintended messages I’ve given
off. Like many others living with schizophrenia I feel very deeply, but what’s
going on inside doesn’t always make its way to the surface. The result can be misunderstandings
and hurt feelings.
All this being said, why not just give in and isolate myself
completely? Well, we all need our relationships to stay well and thrive. We
need each other’s energy to stay on track. We need each other’s varying perspectives
to keep our own perspectives straight. Living in a vacuum gives way to indulging
in skewed thinking and unsubstantiated fears. And the bottom line is that our
friends and families do need us. We have something unique and special to
contribute to their lives. They are struggling too and need our support as much
as we need theirs.
Two ways that I think are easy methods of staying connected
are standing appointments and weekly check-ins. A good friend of mine told me
about making standing appointments. She makes lunch and dinner dates with her
friends on a regular basis. This helps her keep up with her friends, fight the
tendency to isolate, and stave off depressive symptoms. I came up with the
weekly check in and sometimes I fall short. It takes the form of a call or text
to let the people I care about know that I am thinking of them.
Final thought--- when in doubt about staying connected just
call. We all, mental illness or not, get caught up in our day to day living.
But it’s not all about us and our struggles. As much as we need our supporters,
they need us. And I’m not saying that it’s easy to look past our own struggles,
but I am saying its necessary if we want to stay connected.
Sunday, July 24, 2016
labels
People who live with a mental health diagnosis and utilize the
services of psychiatrists, therapists, psychologists and the like are being
done a disservice. And this disservice is dangerous. It has its roots in
arrogance and cultural bias. I have experienced this disservice firsthand.
There is a myth of high and low functioning individuals with
mental illness. These terms are problematic for many reasons, but mostly
because they assume that everyone with a diagnosis should be the same. They
assume that everyone with a diagnosis have the same challenges, coping skills,
supports, etc. Basically, these terms assume that there is only one way to be
mentally ill. So, individuals with bipolar disorder behave this way, people
with schizophrenia behave that way and so on. This myth does not take into
account the individual as a unique person with a unique set of circumstances.
Soapbox alert! People with a mental health diagnosis are as
varied as people without. Our experiences are not the same. Our symptoms and
our responses to our symptoms are diverse. What is debilitating and limiting
for one individual is not even a consideration for another. This is why this
trend of cookie cutter psychiatry fails many of us.
Over the past three years I have been able to work full time
and manage things moderately well with a diagnosis of schizophrenia. There have
been bumps in the road, but for the most part things have gone well. For several
years following a breakdown in 2007 things didn’t go so well and prior to that
I was “successful” in a great career, but always on the brink of falling apart.
What I’m getting at is cookie cutter psychiatry misdiagnosed
me for almost twenty years because it labeled me high functioning. I was
misdiagnosed and received inappropriate medical treatment due to the arrogance
and cultural bias of my health care providers. I didn’t present as a
stereotypical individual with schizophrenia. I had an advanced degree, was able
to hold down a job, was articulate, well groomed, etc. The health care
providers who were treating me had low expectations of individuals with mental
illness and even lower expectations of people of color. I didn’t fit the
stereotype of what an African American woman with schizophrenia was, so I must
have been alright, right? Wrong.
This kind of psychiatry is dangerous. From this perspective,
doctors and other health care providers miss symptoms, assume wellness,
over/under medicate people and misdiagnose. Okay, so what are some possible
remedies? Well, for one, psychiatrists in particular need to spend more time
with their clients. Fifteen minutes is not enough to me to get a full picture
of a person. They also need to be keenly aware of their own cultural biases. We
all have them. Let’s just get real about them and check them at the door. How
about also assuming that the people they are serving are experts on themselves?
Another big one is taking advantage of collateral contacts. No one lives in a
vacuum. Doctors need to consult family and friends when clients agree to get a
well-rounded view of who they are dealing with.
High functioning, low functioning are labels that act as
shortcuts for doctors who don’t want to do the footwork. We are “individuals” managing
a diverse jumble of symptoms and trying to make sense of them. We deserve to be
treated like the multifaceted people we are. We deserve to be in partnership
with our healthcare providers without limiting labels.
Wednesday, July 13, 2016
leisure time
Leisure time is a fantastic recovery tool. It is the
intentional act of having fun just for the sake of fun. It is essential to
having balance in life. When you have a mental health diagnosis, you spend a
lot of time “working” your recovery. This can get tiresome real fast. It takes
a tremendous amount of energy to manage symptoms, medications, doctor
appointments, etc. Add to that the non-mental health responsibilities like
paying bills, keeping your home clean, family obligations, friends, work, and
so on. A person can burn out real quick without an intentional plan for fun.
In my opinion, intentional recreation activities are as
important as any other coping mechanism like getting enough sleep, eating
right, exercising, taking meds, etc. Scheduling tome to must have fun
re-energizes you. It puts your circumstances into perspective. Leisure time
fives you a break from your trials and tribulations. It actually gives you the
strength to manage your struggles. By taking time to take “good” care of yourself,
you lower your stress level so that when things get hairy you are less likely to
break down. When you have fun things planned you are motivated by them. You
have something to look forward to and can see a light at the end of the tunnel.
Living with a mental illness can be draining. We spend so much
time managing the devastating effects of our illness and navigating circumstances
surrounding our illness that we sometimes forget about fun. Sometimes it’s like
we are afraid if we let down our guard everything will fall apart. Well,
everything will not fall apart-it will fall together.
Where do you begin if it’s been a while since you had fun? Start
with a list of things you used to do for fun and add to it things you might
like to try. If you get stuck, refer to your local newspaper for upcoming
happenings, clubs, support groups, etc. Don’t stop there. Once you have your
list, create a plan with deadlines to hold you accountable. Commit to at least
one activity a week that will totally be about fun. Be sure to invite someone
to join you, that way you are less likely to back out of it.
Be gentle with yourselves and have fun!
Tuesday, June 28, 2016
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.
Sunday, June 19, 2016
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.
Sunday, May 29, 2016
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.
Tuesday, May 3, 2016
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.
Monday, April 25, 2016
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.
Sunday, April 17, 2016
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.
Sunday, April 10, 2016
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.
Tuesday, April 5, 2016
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.
Monday, March 28, 2016
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.
Saturday, March 19, 2016
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.
Saturday, March 5, 2016
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?
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