Whining

Our society hates whiners.  We are told from most every aspect of our lives to stop whining and complaining, to pull ourselves up by our bootstraps and get moving.

It is very rare that I feel comfortable or confident when writing my posts.  They can take me hours/days to do.  Quite often I get part way through a post and find myself so conflicted that I don’t finish.  Sometimes I don’t begin.

It seems I’m always apologizing for the content of my posts and the timing gaps between them.  I worry that they don’t contain enough information and resources to assist those who read them.  I don’t give many facts and figures; I don’t cite many authorities on the subject of mental illness.

My blog is personal.  Because it’s personal, it’s difficult for me to write.  It seems I’ve been apologizing for my mental “illness” all my life – both before and after it being recognized as an “illness”.  As we “mental health consumers” begin to find our voice much of what is related seem like horror stories.  They are discouraging to hear, over and over.  However I don’t believe the stories are told simply for dramatic effect or to solicit sympathy – the events are, after all, horrific to experience. 

A couple of days ago on the Minds on the Edge Facebook page  a posting suggested that while it is comforting to commiserate over the stigma of mental illness, perhaps it would be helpful to post actions we are taking to fight it.  While I agree that it is important to move beyond the pain to empowerment when we relate to each other, I do not think we are yet ready to stop telling our story to the general public.  It is with the general public that stigma must be stopped.

On Wednesday night President Obama spoke in his State of the Union Address of the anger that the American people are feeling right now.  He said (paraphrased) “they are afraid for their lives and their livelihood.  They are frustrated because they continue to ask for, vote for change and get instead the same status quo of immovable personal interests, and end up feeling they are not being heard.  Fear makes us angry.”

I will be following up this blog posting with one on how I feel the statement "Fear makes us angry" can directly relate to mental illness, specific to my personal experience.

The mentally ill are often seen as violent, to be feared, and put away from others.  Indeed, our voices can be angry and may continue to be in the near future.  I submit that quite often it is because we are afraid – for our lives.  We are frustrated with the lack of true understanding, consideration and concern for our health, our safety and our quality of life.

Yes, we're angry.  We're afraid!  Quite often we have been living a nightmare.  We are asking to be heard.  

The President also spoke of not giving up on working together to bring about change. 

Neither should we.  But in order for change to occur, it must be recognized as necessary.   In order for others to come together with us to create change, they must be educated as to exactly what needs to be changed and why, and to recognize its importance.  Sometimes a large pendulum swing is necessary for change to occur.

No, the general public does not want to hear our horror stories.  They don’t want to hear or experience the angry voices.   Much better those voices be sedated - relegated to inferior, unworthy, shameful beings much easier forgotten.

It is needful that we continue to make our voices heard – to Bring Change to Mind – to educate and promote understanding and compassion.  I am not whining.  I am not less than others because my inter-personal education and physical genetics could use improvement and assistance.   I do not deserve less than others – in my health, my safety, or my quality of life.

I stand with Dr. Fred Freese when he said, “I refuse to be ashamed any longer”.   I refuse to stop telling my story - difficult and uncomfortable though it is – for myself and those who may read it.  I refuse to stop providing links to other stories.

With that in mind, please check out this blog posting by John McManamy entitled Clinicians - Worst Purveyors of Stigma.  Be sure to also read the insightful comment by Loretta that follows the article.  This is a mind-set/practice that needs to be changed.

I'm an ignorant voice

Amber Osterhout, blogger and artist of Gaining Insight posted info today on NAMI's "In Our Own Voice" campaign. This is a program where those in recovery give presentations to share their experience of recovery.

After reading it, insecurity enveloped me and my heart sank. I wondered, again, why I'm doing this blog, and if it serves any purpose.

The insecurity made me feel that I'm an ignorant voice in mental illness awareness advocacy. I am definitely NOT "in recovery" (which is quite evident, I'm sure, from my last post).

Some points from NAMI's page: "Anyone familiar with mental illness knows that recovery is not a singular event, but a multi-dimensional, multi-linear journey... Understanding recovery as having several dimensions makes its uneven course easier to accept. Ultimately, recovery is about attitude and making the effort."

I gave up the effort for myself a while ago. I'm not much of a role model for Beth when it comes to confident recovery.... and I'm probably opening myself up to much criticism by writing from the perspective of the "uneven course" in this blog.

But the uneven course is living with mental illness, living Life on the Edge. I guess what I'm hoping for is to continue to find opportunities for Beth along her journey. I understand that each person needs to take charge of their own healing and I can't do it for her. Actually she does quite well at the hard work of managing and dealing with her illness. But at the current moment she is at a bump in the road.

What we both have a hard time with is trusting people... obviously .... paranoia is a major issue in Beth's life... one of those "Catch 22's" that makes it difficult (at times impossible) to interact and work with people, to seek out and stay within an extended "support network".

And then there's the frustration of dealing with the support network, who don't have all the answers, and sometimes don't even have a good understanding. Caseworkers in the past have actually encouraged her NOT to tell anyone she has a mental illness - "They don't need to know". Doctors put her on meds that they know are responsible for major weight gain and then continually nag her that she is overweight, making it sound like she's not actively taking part or working hard enough at her recovery. They use losing weight as the "fix-all" to other issues she tries to address. "If you lost weight you'd feel better". They don't give encouraging voice to the fact that she goes out and walks every day regardless of the paranoid voices in her head and regardless of how dragged out she feels because of the med. They don't believe that she doesn't drink or do drugs, continually asking the question but never listening to the answer.

I'm hoping that my coming out - at least through this blog - will encourage Beth to try again to do the same, and to regain her faith in a "recovery" process.

The good news is there is progress. Beth says the new med the Nurse Practitioner put her on seems to be helping with the paranoia and delusions. There aren't any local support groups around here and so her social interaction is still online, with the general populace. I hope the difficulties of trying to fit in there don't lead to another down cycle.

I continue to tell her about the things I've found, the blogs, websites and initiatives to fight stigma and support those with mental illness... Maybe? she, herself, still doesn't want to be part of the stigma of mental illness? She doesn't seem all that interested.

It is a journey, an uneven course... and I as a Mother can't stop trying to help - even if it is in an ignorant way...

Should we fix it?

I'd like to say Thank You to those who've visited my blog and made comments both here and on the Minds on the Edge page on Facebook. I appreciate your thoughts, concerns, offers for help.

"Help" is part of what I'd like to address in this post. Also, to state again the intention of my blog. My blog is intended to let others know what it is like to live with "Mental Illness" and the struggles and frustrations that entails. It is intended to open the eyes of those unfamiliar with the struggle. It is not a cry for "help" on a personal level.

hmm.... I'm not getting my point across the way I want... I don't want to sound unappreciative of people's offers to help or their recommendations, and I would certainly never advocate that anyone not strive to move forward.

When I write of the frustrations of living with mental illness and the problems of the current "systems", I'm not doing so simply to criticize them. I'm doing it to call attention to the issues and the often "Catch 22" nature of the entrenched modes of thinking and doing things that make the systems ineffectual and keep things from changing for the better for all.

I'm not new to the mental health issues that concern my life, I'm just new to giving public voice to them. Depression has been part of my life since age 30 (20+ years), anxiety all my life, and Beth's Schizophrenia since she was age 20 (10 years now). We haven't exactly been sitting on our hands all this time, but we have ourselves perpetuated the Stigma - by not speaking out, by being ashamed, by ignoring and denying and by harboring the thought almost constantly that we needed to fix ourselves.

I feel the stigma of mental illness has kept us quiet, ashamed, and hiding because mental illness is often identified as an imperfection in the person ('there must be something wrong with him'). The voices we hear (real and imaginary) are very often critical voices - or interpreted as critical voices. It's important to be gentle - on both sides.

Unfortunately, it was what seemed to be the "go get help" voice/sound-bite that threw me into the tailspin of depression for the last few days. Again, please understand that intellectually I can rationalize that those words were not meant to be critical, but emotionally... I guess I can't... or couldn't, yet again, this time.

I have found over the years with Beth and myself, that sometimes no matter how hard we try, understanding the depth of the difficulty for the other can still escape us; we don't always understand just how hard the other is trying. Sometimes we don't allow that the fix might not work for them like it did for another, or maybe not at this time, given all the circumstances.

Maybe some things can't be fixed, and maybe some things don't need to be. They, and the person, just need to be accepted, as they are. To me, accepting the person, means erasing the negative connotations applied against that person because they have an illness. As others have said: We don't call a person with cancer "cancerous".

For example: I've spent 20 years going to Psychiatrists, Therapists, Counselors; on various medications; I've read (seems like) every self-help, spiritual philosophy, and each new "program" for "healing" my "emotional problems". I won't say I haven't learned from them, that my life is not better for them, or that I haven't gained from them. But when all is said and done, I am still here, as I am, anxious, reclusive, easily upset. The physicality of my issues affects me much more directly and quickly than it ever did... having progressed over the years. I accept that I'm probably not going to get "healed" of this, given the various circumstances of my particular life.

Depression is not "me" but it does affect many aspects of my life. The idea that you choose the thoughts and attitudes you have is not lost on me. 'Just change your mind.' 'Think positively'.

Once my son said he believed that I "liked" my depressive thoughts and emotions, and thus I perpetuate them. That idea is in itself very painful, has led to many guilt-ridden days and nights. The psychiatrist that Social Security sent me to for evaluation diagnosed me as a depressive personality. He gave the technical term, but my psychiatrist explained it as a person who always sees the glass half empty, it's just their natural attitude, and psychiatry does not normally treat for it. I took it as the first psychiatrist's way of siding with Social Security, to keep me out of it. But Social Security must have agreed with my psychiatrist's view of the illness as having progressed to Post Traumatic Stress Disorder after years of stress and crisis after crisis. Now there is a prevalent, predominant, physicality to it that cannot be denied.

Since the first diagnosis of depression at age 30, I have spent 20+ years trying to use my mind to change my mind: 'Think positively', 'Change my attitudes'. That takes a tremendous amount of time, focus, and work. Invariably I would end up in the depression cycle again.

It used to be that I was predominantly "happy", healthy, looking forward to life, enjoying my life. I walked through my days pretty much okay, until a crisis or difficulty imposed upon it. Either I didn't handle those crisis es well, or there were too many of them. Who knows?

Now I am predominantly "dull", unhealthy, have no belief in any future, accepting what is. Anxiety is triggered by very minor events, which is why I am so reclusive... less stimulus, interaction with others, less anxiety; there's safety in the corners of my home and little place else.

Major depressive events such as the last four days are fewer of course, there's less to trigger them. Maybe you could say I'm just terminally depressed. If you look forward to nothing and have no expectations, just waiting for the days to pass; you may have no life, but at least you're not riding the roller-coaster of extreme emotion.

Being in this state I don't have the physical strength (health) or consistent enough motivation or desire to change it. I used to 'push' myself, 'force' myself to try, to do. It's very tiring. Sometimes I still do that, when I absolutely have to for some reason. I see those reasons as few and far between now, or I feel I just don't have the capacity any longer. Now I accept it.

I don't look to "fix" me anymore, but accept me and my life as what it is. It doesn't really help me feel any better about "me", but it does keep the thoughts at bay, which allows the Peace I need. Peace is a wonderful thing.

Life on the Edge

I watched a show last night on a subject that has impacted my life for quite some time: Mental Illness. The show was titled: "Minds on the Edge". It can be seen on PBS stations or at their website: Mindsontheedge.org devoted to the subject.

I have "suffered" with debilitating anxiety and depression my entire life. My daughter was diagnosed with schizo-affective disorder nine years ago. The stigma of mental illness contributes to keeping me down and isolated. Fear for my daughter's pain from stigma is what has kept me quiet.

The slogan of the Minds on the Edge campaign is "If we can talk about mental illness, so can you". And so I have finally decided to. I am beginning by asking all who read this to watch the "Minds on the Edge" video. It's only an hour, but it clearly and easily explains so many of the horrid issues that folks with mental illness face and the deterrents to getting well that the "systems" of our country continue to operate from.

One major point that I would like to re-interate is that mental illness is an ILLNESS - a physical issue with the brain. There is much that needs to be done to enhance that understanding. Please begin to take part, and help save a huge population of our people who live life on the edge.