Wednesday, December 30, 2009

Gotta Have Faith

Recently a Facebook friend commented that she had named a pet "Faith", because, she said, she needed to remind herself that "I gotta have faith".  Whenever I contemplate faith it is usually includes an idea taken from "A Course In Miracles".  The idea often helps me to turn around a fearful or discouraged attitude and start again with a renewed effort to look at the world in a positive way.

Yes, we've "gotta have faith".  When thinking about it, we may ask questions like:  "what is faith?" and "what do I put my faith in?".  The idea put forth by the Course is that faith is nothing more than what we believe.  When looked at from the standpoint of our daily lives, rather than as a religious  philosophy, we can look at all the areas of "what we believe".   

We always have faith in something.  The question is:  What is the "something" that we have faith in?  And does that "faith" serve to make our life (and the lives of those around us) better?  Do we apply our "faith" in a negative or a positive way?

For example:  We have faith that the lights and power will come on when we flick a switch.  If they don't come on, do we "have faith" that the situation can and will be remedied?  It depends upon our attitude.  We can worry over what the problem may be or we can call the electric company or an electrician.  Then we can "have faith" in the ability of those people to correct the problem, or we can believe that "they" will take forever to fix it, if they fix it, blah, blah, blah....

We can bemoan a rainy day, or we can say "the world is getting a much needed bath!" Do you have faith that the "sun will come out tomorrow" when today seems miserable?

We can constantly talk our worries, be disgusted with all that's wrong with the world, put our "faith" in misery; or we can actively work to see all the good that's around us every day.  If we find our faith is often misplaced, the Course is all about forgiveness - which means to be gentle with ourselves.  Having faith in "goodness" is not hard - it's simple. 

Kindness applies to everyone.

When I had my website, I came up with a series of "Gentle Reminders" that I use to help myself, and I hope, others.  First and foremost among them is:

Keep a simple Faith.

Tuesday, December 22, 2009

Fourth Attempt

This is my fourth attempt in as many days to get a post out.  There are three unfinished posts sitting on my "dashboard".  For some reason the issues I face are keeping me from getting them done.  I guess I'm going to just highlight them here, because each is important to me.  I do hope I can get each of them completed at some point....

Post One:  I promised in my last post to speak of websites and blogs I have found that I found helpful when it came to mental illness.  But before I did that, I wanted to speak of the "terms" and "labels" that are used in talking about mental "illness".  I felt (and still somewhat feel) pressured to get some posts out, thinking that others are counting on me... and then the thoughts (that therapists and doctors will attribute to mental illness) start pressing in - that I have nothing to give... who am I to think I "know" anything..... that I actually don't know anything... blah, blah, blah...  And as I work to get the post done, I struggle to get it "perfectly right" - something I used to be able to do (I was an "A Student" once - a valued employee once) and the literal hours go by and it still isn't what I want it to be...

So that one got put aside.....

Post Two:  The next day Beth and I were talking about what I had found.  She became upset with me, that I am putting my focus on "mental illness" rather than trying to enjoy a "normal" life.  She began her push at me that she does every few months - that I need to go back on meds and see a therapist - so that I am not "crying all the time".  (I don't take meds now, haven't for a while, and don't really want to).  The "meds or no meds" argument is something I would like to explore in my blogs... I've found websites and blogs with both sides of the argument.  And so I tried to write a blog about the happening between Beth and I, but it was too new, too personal, and I was too upset... 

And so that post went unfinished....

Post Three:  It's Christmas.  And I wanted to post a Christmas Message to my blog readers, friends, and loved ones, in fact "everyone" in the world.  But again the confusion of mind, the jumble and just "too many" thoughts, the "who am I" and "what do I know or have to give" thoughts, the depression that has had me in a stranglehold again for the last few days... for I don't even know what reason.... only that it's deep and it robs me of my ability to do or care about anything....

And so that post is sitting, incomplete - filled with love, encouragement, and thankfulness that I want to express... but can't find the "right" words....

It's Christmas.  If you're alone, afraid, hurting - please know that there is someone that caresI am thinking of you with love.  It makes no difference that we've never met.  There is a Power in the Universe.  That Power is Ultimate Goodness and Love - that is in you and in me and always with us.  And I am sending that Love to you.

To all the new friends I've met on Facebook -  Thank you... and Blessings to you as you go forth in the New Year.  Let's do our part to make it a good year... filled with the best we can be...

Teach only LOVE, for that is what you Are.                                                 -  A Course in Miracles

Friday, December 18, 2009

It's 3 AM I Must Be Lonely

It's 3 AM, I must be lonely.....
That's a line from the Matchbox 20 song (aptly titled) "3 AM".  Actually I'm not lonely, but it is 3 AM. There have been nights when it was apropos, when it haunted me, but not tonight. Tonight my mind is just full, swimming with fragments garnered from two days worth of watching videos, reading websites and blogs, considering the theories and opinions of eminent and not so eminent people who concern themselves with mental health.

But before I get too far here, I've got to apologize to my blog followers for being AWOL for almost two weeks.  I haven't felt well, physically or mentally, and I took a hiatus that became somewhat an OCD type attachment to Facebook games.  Rather than see that as a bad thing, I guess I've just decided that such compulsion was what made me such a good worker when I worked! ha!

While that was going on, Minds on the Edge (on Facebook) was also posting a wealth of links to be explored.  As their postings grew, so did my interest.  Eventually I couldn't take it anymore and they lured me back!

Ok, so this post is just to say that I'll be back in the next few days, probably with a plethora of posts on the various things I've found and my thoughts surrounding them.  Because my mind is so full of it all at the moment, I can't seem to settle down to organize it into a coherent blog post as yet, and I've decided its probably going to end up as a bunch....

But it's now FOUR AM and I need to try to sleep!  Hopefully getting this much out tired me enough to do so!  Catch you on the flipside.....

Friday, December 4, 2009

A momentum is Building!

Dear Friends,

Today I finally remembered to address the problem that was preventing me from posting my story on the Bring Change 2 Mind website. Emily from that site was a wonderful help, and I was able to post my story.

This evening I went back to see if there were any comments that I should respond to. While there I read some of the other stories of consumers, friends, and family with mental health issues. The stories tore at my heart, especially those that detailed the suffering in silence and isolation that so many have gone through (and continue to go through) because of our ignorance and fear.

Tonight I ask you once again, if you can spare just a few moments, to please visit the story page at Bring Change 2 Mind and read a few. Perhaps then you will have a better understanding of why we need you.

A momentum is building. Through the efforts of Bring Change 2 Mind and Minds on the Edge those with mental health issues are coming out, and finding their voice. We are picking up the byline of Minds on the Edge that says: "If we can talk about mental illness, so can you".

And we are. The Facebook pages of these two organizations are having continual traffic. Last week the "Minds" page posted that they are in the top 7.5% of fanpages on Facebook, the Number 2 FB gathering place. The Bring Change 2 Mind Facebook page includes a very active discussion tab where people are coming together, answering questions, providing support and resources. That is great news.

However I've been concerned that much of the traffic is coming from mental health consumers and those close to them. It is really important that the word be spread to the general public and that the general public come to understand and begin to take part in helping us address the issues.

The conversation is moving forward. Today both Bring Change 2 Mind and Minds on the Edge posted links on their FB pages to news stories and blogs that are engaging large segments of the country. Please check them out: Stew Friedman's blogpost addressing the business community and how they can help change attitudes and practices in the workplace; and the Clutter Museum's blogpost regarding Elyn Saks (a law professor and panelist on "Minds" video) and how her recent post to academia is seeing a whirlwind of email links activity. The comments on the Clutter Museum page are especially interesting. Please be sure to take a look.

Whenever you can please join the conversation. Post on your Facebook or other Social Site pages, give people links to websites I've mentioned, or send them to my blog http://pam-lifeontheedge.blogspot.com/ for access.

A momentum is building, our voices are coming out strong, and the silence being broken. Please lend your voice to help us push it ever forward, alleviating the fear, isolation, and stigma.

Thanks and Blessings,
Pam

There's Always Hope

Hello Friends,
Oh my goodness, what a week it's been! It's had a lot of activity (for me, anyway) and I'm not sure how I feel about that! Good, I guess... and that is different :)

I guess it feels strange because my emotions have been on a roller coaster. The "norm" for me for quite a while had been just self imposed numbness, so that I didn't have to feel anything.

Sometimes the world still imposes itself upon my desire to hide, such as when I had to try to deal with Frank's (hubby) insurance company regarding his recent hospital stay. What a nightmare that has turned out to be! It seems that since we moved to Vermont, none of the Doctors or hospitals around here are in the "network" of the insurance company. So that means that the insurance offered by his employer is pretty much useless to us. We will be required to meet an annual $10,000 deductible on top of the premiums. This is the only insurance offered by his employer, and now with him having a "pre-existing condition" getting our own through another carrier would be a problem..... I guess I hope now that the new Health Care Bill doesn't require people to have insurance... we'd be better off taking a chance of going without it, and covering costs ourself. Not sure what we're going to do. I didn't (and don't) want to think about it....

Thinking of it puts me in deep deep depression... whatever future we may have had feels blown for sure...

Frank was getting ready to travel again for his job, meaning I would be alone again for a while... Beth was trying to register her car in Vermont, but had lost her old registration, meaning she had to take a flying 6 hour trip to New Hampshire to get a copy and return in that same day (of course this was the last day before her registration expired!) Worrah, worrah, worrah! I was a zombie.

I've tried to move past it.... it is Christmas time after-all.

Meeting lots of new folks on Facebook, reading blogs, and enjoying having people to interact with again actually made me feel happy one day! When Beth called that morning, I told her it also made me feel uncomfortable. I'm just not used to feeling happy; it was kind of scary... can you believe that? Beth said: "Don't analyze it, Mom; just let yourself feel happy."

It lasted a little while and felt good! It's been so long!

The Minds on the Edge Facebook page has posted a link to my blog twice. Interaction with more people and the kindly comments they made felt wonderful. Sometimes I really need a reminder that there are good people in this world, and I am very grateful. Thank you so much!

I read a nice blog about the spirit of Christmas, that told of a man who had been a true "Secret Santa" for many years, giving out $10 and $20 bills to folks in obvious need. It was such an inspiring idea, and made me think of the spiritual truth that "To Give is to Receive". So I made my own blog post around both those ideas.

But you won't find that post now. I was feeling so conflicted about not being that "good" myself that it took me almost 4 hours to write it. Thinking I should let that conflict show (because my blog is about what it's like to be me) I spoke of it in the post and tried to express what I was feeling. But it "felt" so awful to have that out there in cyber-space, that I just couldn't and deleted the post a short while afterward.

I continue to talk to Beth about the folks I've met, the support and ideas around Minds on the Edge, Bring Change 2 Mind, or individuals' blogs. Most of the time she still says she just can't come out herself yet, though she does look at a few websites and blogs. We've talked about trying to get something going around here.

Beth has talked with her Nurse Practitioner about the Minds on the Edge video, but received no apparent interest. The NP told her of a group she'd try to get her in to, but you need special referral, apparently. It's been weeks with no movement there. We'd like to do a showing of MOTE and perhaps try to get a real "face to face" support group of some kind. But we really have our doubts that just the two of us would have the ability and confidence to follow-through and not give up.

We've talked with my son, Patrick, asking if he would lend support and assistance. He seemed open to the idea, so we'll keep working with it... Things move slowly... but that's the only pace I can handle now...

Beth says she continues to make progress with her new med, though she's a little worried about coming off one other. She's had some panicky anxiety/paranoia in her new apartment, and nightmares most nights, but she's handling it... The NP wanted the Psychiatrist at the office she uses to meet with Beth, to go over her meds, and that finally happened this week. He added a mood stabilizer... round and round we go...

I ended up alone only one night, because Patrick is living with us now. He had gone to visit friends, and Frank was gone on work travel. That night I watched Rudolph. I wanted the good feelings it brings. The emotions were extreme: the wonderfulness of Christmas shared with children and my own heartbreak of no grandchildren to share it with. I moved between irrepressible smiles of joy and scalding tears of emptiness. The extremity of it scared me, but I was happy that I gave myself the opportunity to feel the joy.

Later that evening I read some of my old journals and felt my connection to Spirit renewed. When I read some of the amazing "conversations" between me and Spirit, I can't imagine how I end up going through these dry spells.

But actually, Spirit reminded me in those posts that the life of illusion we live here has little to do with our Soul connection to All That IS. That connection is never broken, no matter the crazy situations we put ourselves in here. No matter how little we see ourselves, how horrible we think we are, God knows differently. And Spirit is with us always, through all those places. We are beloved, regardless, and should act from that, giving no heed to the obscure human characters we have made ourselves to be.

Patrick and I talked for hours the next day... we drive the rest of the family crazy with the length and depth of our philosophical and spiritual discussions. But we enjoy it. He helped bring back the hope, the joy, and the ability to see myself as something other than just my shortcomings. Having him here is a real blessing.

That's just part of my week. There's more, but I've been too long already... As I said, this much activity is a lot for me! Yes, it's been a roller-coaster, but having things to do and people to talk to has felt wonderful. Handling it fairly well gives me hope that maybe (maybe) I can handle more. It scares me to be out here, and it scares me to tell people that I'm moving again. I'm afraid I'll fall back and retreat again, and I'm afraid that people won't have understanding if I do.

But I hope you will be encouraged, as I am, that Hope has returned, a little bit. There's always hope, they say.....

Sunday, November 29, 2009

It's Only Business

So often you hear it said: "Don't take it personally, it's only business." I've got to say I've never understood that statement. Seriously. I'm asking the question here... How can you NOT take something personally, if it is directed at or affects you in a negative manner? What other way is there to take it? I am a PERSON - deserving to be dealt with in a respectable and honorable manner. We are encouraged to take it personally if it affects us in a positive manner. But if it's negative.... well that's "just business.".

I've always seen this statement as an excuse to not consider the humanity of the person you are having dealings with. I see this as especially easy to do within any "system" or business. If you don't consider the implications of your actions on the people it will affect....

I've been accused of being naive before.... and perhaps I am here.... or a bit too simplistic....

Today we watched Charles Dickens "A Christmas Carol"... a dramatic movie version starring George C. Scott.... It was excellent... and as is the point, this time of year.... an exchange in it between Scrooge and his old business partner (now dead, ghost) Marley brought home what I am trying to say....

Here's part of their conversation when Marley was trying to warn Scrooge against the path that he was following:

Marley: ....... "Not to know that no space of regret can make amends for one life's opportunity misused! Yet such was I! Oh! such was I!"

"But you were always a good man of business, Jacob," faltered Scrooge, who now began to apply this to himself.

"Business!" cried the Ghost, wringing its hands again.

"Mankind was my business. The common welfare was my business; charity, mercy, forbearance, and benevolence, were, all, my business!"


Well, it was much more dramatic in the movie :)

But I hope you get my point.... In my humble opinion, the business community, the economy, the people of America, and beyond to the world would be in much better shape if those involved in business considered their first order of "business" to be the common welfare....

ooops! there's that nasty word again! (welfare).... it used to have a much different meaning!

Your thoughts anyone?

Friday, November 27, 2009

The Goodness of Life

In my last post I mentioned that I would like to have my blog be more uplifting. I would like more of my blog posts to be about the Goodness of Life.

I used to do that, you know. I used to have a website that was entirely inspirational. I filled that site with quotes, famous people, poems, books, music, and my own musings about all things GOOD - even my thoughts on God, the Universe, Truth.

A few years ago I used to scower the internet looking for positive thoughts, uplifting ideas, anything that would lift me when my mood was dark or sad. Sometimes I had a difficult time finding those places.

And so I thought I would make a site where people like me could go... a place that would let them know they were not alone... a place where their fear, sadness, and depression could be left behind... changed into a new, different possibility.

I loved the material on my website, and I believed in it. I still do. It brought me joy. I loved the times that I absolutely felt "in the flow" and the words seemed to come from some place beyond me.

But I do not "walk" what I "talked". At times I felt a hypocrite spouting the goodness of life when my own was falling apart around me; when I let the difficulties of life pull me back down to depression; when I spent my time maintaining my own poor, unhealthy habits rather than working to change them.

Another pretty heavy crisis came about... and I let the site go...

And I sunk back into giving up.... waiting to die... and having it all be over....

Since that time the world has moved on, the crisis has passed, and life continues, such as it is.

I spent some time in a couple different internet communities but eventually left those also, when I couldn't always maintain a pretty picture of myself to present to the world... when the depression overshadowed and oozed out and showed. It was very embarrassing.

Since that time a few Voices have come into my life with little hints that perhaps I'm too hard on myself. I met a man online that was part of a Distance Healing Network and I thought perhaps I'd join... but I was in too insecure a place at the time. He said most healers are also in need of healing themselves.

My youngest son, Neil, asked me to come back to Facebook so that we could at least share pictures and such. So I did. It's been fun, and I've met some great folks. And I'm thankful.

And then I watched "Minds on the Edge" and got a new perspective on the physicality of mental illness and the need to speak out and bring a new understanding.

And then I heard about "Bring Change 2 Mind" and got a new perspective on the stigma of mental illness... and realized how much of it was my own. Those two deepened my conviction to try again...

And then my oldest son Patrick started telling me of a community he is part of, where they discuss spiritual and life issues, often with greatly differing opinions. I said I found those communities too difficult to deal with, someone always looking to discount, disrespect, and lessen your beliefs.

And Patrick said that should never be a reason to stop speaking your beliefs. It doesn't bother him that others don't believe as he does, or even if and when they try to belittle his beliefs. It doesn't bother him that he has shortcomings and that others may point them out. Each person's beliefs are their truth and each of us has the right to speak it. (He talks of it much better than I in his blogpost, here).

Wow.

Sometimes I'm so proud of the men that my sons have become. (You know you're getting old when your children are teaching you.) But I'm so thankful for that too.

Because of all this, little parts of me, pushed down and buried, are trying to seek the light of day. Somehow they keep getting squashed. But I'm not giving up hope that soon I will bring a few of them to fruition. I hope you won't give up on me either. Someday soon I hope to talk to you once again of the goodness of life.

After Midnight

"The Edge" for a while now has been not being able to sleep at night. It's now 12:42 AM; I'm up after more than an hour of tossing and turning, with no sleep in sight. It's like that most nights.

I haven't written for a while. I'm kinda sick of me, and figure others must be too. I don't want to write what my life is like. I want to think pleasant thoughts and have something positive and uplifting to impart. But that's not happening.

I know a good portion of all my troubles stem from my habits - sitting around all day, smoking. In the quiet of bed, trying to relax and drift away, the realization of how sick I feel - how sick I have made myself that day - is my companion. Every night I end up trying to think of ways that I could smoke less, get some exercise, lose some weight, maybe even get outside?

But the next day is always the same. The first thing I reach for is my cigarettes. The exercise consists of doing the dishes, maybe a little housework, and by 10:00 AM I feel worn out. At intermittent times throughout the day my chest and throat tighten and I start a coughing/choking session that lasts until I can get whatever it is opened up again. Is it asthma? COPD? Who knows?

I'm hoping that when I finally get to the Doctor's appointment in January (that's been a 4 month wait) that he won't just give me hell for smoking and my weight, but will help me find a way to get some air so that maybe I can move around a little more.

Sometimes I think, "What happened to me?".... But I don't want to go there. Not the self pity... it's much too easy to fall into and I've been in that place way too many times over the years. I'm tired of it.

Today we watched a movie that's a few years old now... "The Family Stone". It stars Luke Wilson, Sarah Jessica Parker, Claire Daines, and Diane Keaton and Craig T. Nelson as the parents. I would recommend it. It's the typical disfunctional family gathering together at the holidays with their significant others, with a bunch of crazy things happening (which are fun/funny). But they also write the family as very loving and caring with each other and all turns out well in the end. Except.... for one happening (that I won't give away) but I will say made me cry.

Life is never like the movies, but the family loving each other... we have that... I'm thankful to say....

I wish I could find a way to come back to who I used to be. The times when the holidays meant so much to me and I filled them with joy for my family.

I'm making myself sad. I guess I just am sad.

I'm sorry...

Tomorrow I'll try again... I will try... to find something good to write about...

It's 1:30... Maybe I can get some sleep soon... and that will help

Friday, November 20, 2009

"Today I Met God"

Today I thought I would give you a post that is uplifting and inspiring. "Today I met God." was spoken by four year old Akiane to her mother one morning. Have you heard of Akaine? I hadn't, until a short while ago. I may be behind. Akaine, now a young lady in her twenties, has had many television appearances, including on Oprah and has been featured in magazines such as Time.


Since that day that 4 year old Akiane began telling her family of her visits with God and his angels, she also began drawing and writing poetry in a manner considered genius. By age eight has had done full oil paintings of the "Prince of Peace" (as she called the canvas), landscapes, a self-portrait, and true to life images of animals. By age ten some of her paintings had sold for over $100,000.

In the early years Akiane's family practiced no religion and there were hardships of illness and financial difficulties. Her mother was surprised that she even knew of the word "God" when she spoke at four. Eventually Akiane's deep seated belief and faith and the tremendous talent that seemed to spring from it convinced the family to embrace a faith of their own.

Now Akiane's works support the family. But of course, it is not about the money. Akiane wishes to share a message with the world. "I want my art to draw people's attention to God."


I do not have enough poetry within me to express the essence of these paintings. After seeing a documentary about Akiane and witnessing the art, I immediately searched the internet for her website. If the heavens were to drop the blessing of money upon me, I would immediately purchase a print of her "Prince of Peace"; it so deeply affected me. But the price of even a print is $800... out of my reach.

Needing to have something tangible from this lovely girl, I searched and found a hardcover copy of the book "Akiane, her life, her art, her poetry". Now when I need to be uplifted I spend some time with its glossy images of her paintings and the quiet certainty of her poetry.

I invite you to visit her website at http://www.artakiane.com/home.html. I hope you will find yourself refreshed, renewed, and ready to carry on again when you have the need, as I have.

Tuesday, November 17, 2009

Giving Thanks

The other day my good friend PJ asked in her blog the question What are you Thankful for? , as we often do this time of year. When I went back to get the above link, I read a number of great replies that were both inspiring and uplifting. Thank you, PJ, for asking the question. I encourage you to check it out, and perhaps offer your own.

No matter how often we do it, giving thanks for our blessings renews us and brings us back to what really matters. When I give thanks at a time like this, I like to give pause to really consider my answer. I guess that's because I kind of see it as a prayer, winging its way to Heaven, in hopes that God will hear me and forgive the times that I've whined and cried and didn't appreciate all that I've been given.

And so, Dear Lord, Thank you....

For another year of the blessing of life.

When I count my blessings, I always include:

That I was born in this time in the United States of America. There is so, so much we take for granted just in that! Like all parents, I count the blessing of my children, born healthy. I can't imagine what it must be like for mothers in countries where their children must go hungry, are sick with no access to medicine.

I am truly thankful that I've always had a home, with a warm bed, and been able to feed us. I am thankful that in America, though we do have poverty and difficulties, there are charities, churches, and organizations, and good neighbors providing help to those in need.

I am thankful for my washer and dryer! And my micro-wave and TV and VCR and computer! And the telephone! And the internet - that gives me the ability to see the world and meet people from all over, and provides access to so much information. So many times I have thought myself poor, yet just these things alone are a lot, so much more than my Grandmother ever had.

I am thankful that we are a nation of laws, even if we don't always agree. I am thankful that we have the right to disagree and the right to have our say on how and when things should change, and the ability to make those changes.

I am thankful for every class of our working folks - Police and Firemen (and women), Doctors and Nurses, Caretakers at Nursing Homes, EMTs that keep us safe and healthy; the mechanic, the light company lineman out all hours in horrific weather to get the lights and heat back on.

Teachers! Oh my goodness.... I've left out so many, but you get the picture. I am thankful for those that work so hard, not just for themselves, but to do for others... to give us the bounties of this country.

I am thankful for Comedians! And Actors and Musicians! Oh how I love music. I can't imagine a life without the radio and music players - all manner of music that we have been given in our lifetime.

I am thankful that I live in New England, the rural life, and my rural heritage. Stone walls and dirt roads and winter snowfalls. Living the farm life - milking cows and seeing calves birthed, feeding them from buckets and throwing down the hay... Wildlife - birds and deer and chipmunks and squirrels... common... The uncommon that I have been blessed to see: Bear and moose and porcupines and even skunks! Summer gardens and autumn apples, and most especially...... Flowers.

Others may say a landscape or a sunset, but I see God most in flowers... the delicate yet perfect nature of the petals... the exquisite array of colors and textures and fragrance.... the joy in a bunch of dandelions given from a child's hand. I have known these things. Who but a loving God could create such as this?

Yes, I count my children, always.

But this year, I ask a special blessing and feel the deepest gratitude... for the one that has been my husband these many years. Life sure has its ups and downs. And we have surely known them. Through it all he has remained a man of character and integrity; soft spoken, calm and strong. When I questioned all, including him, he never waivered. When I lost it, he was steady. When I was angry and bitter and acted the child, he loved me still. He put up with all my antics and never complained, not once, all these years, but stood by me.

I was blessed with a rock... that saw me through the storms of this life, who always sheltered me, kept me safe and secure, even in those times that I thought not. I am thankful, that however we did it, we have remained for each other, and now we share the love that only time can bring.

How many times have I remembered.... crying in my bed at 15, scared and wondering about life.... asking God.... if I can have just one thing.... can you give me a Good man to be with me?

This year I say again... Thank you, Lord, for answering that prayer.

The Dream of Things

You don't always get to have the dream. I wish someone had told me that.... Or that I had understood it, if they did.

That's why it's a dream. They don't tell you: Go after your dream but don't have the expectation that you'll get it. Living more for the dream than for the folks in your life is what leads to hurt and shattered lives.

Maybe that's why the ones who seem to attain their dreams are usually single... or end up single in the process. There is no "happily ever after" or even the little white house with the white picket fence.

I expected the dream, or at least my semblance of it. But I found life is more about coping with the traumas it brings. No one is exempt. I wish they had taught us that.

Expect pain. Expect troubles. Grab the joy where you can. Smell the roses. Because you're going to need them when times are tough. Make it about the love, not about the gathering about you of things. Don't place your value of you and the ones you love on what you have, what you have accomplished - what they have or have not accomplished. You can live with very little, but you can't live without love.

Maybe I heard all these things, but I just didn't heed them.

Or maybe I just expected both - the happy little life, made up of things and love. This is America, after all.

It takes a lifetime, they say. When I look back, I can see that. The coming together, in youth, is often about the getting of things, and I wonder just how much real "love" is in those years.

It used to be, for me, that not having the things or losing the things or not accomplishing some thing was what brought the pain, led to anger, bitterness, distance, misunderstanding.

Now, when I look back, what brings the pain is the memory of the hurt, the anger, the bitterness - the gulf created between us over want of the thing.

I don't have the "things" anymore. Of course, I'd still like to. But it's not important if I don't.

Now the priority is to not hurt the ones I love. Now I see where those around me always knew that, much better than I. Now the pain comes from remembering how I hurt them in the past, over want of things. Now my life is about showing them that only the love matters.

Maybe some people have always gotten that. For me it's taken a lifetime. Now my dream is that I can live up to the love that they have for me, for the rest of my lifetime, with or without things.

Saturday, November 14, 2009

My Story

This evening I tried to post "My Story" on the Bring Change 2 Mind website. I wasn't able to because it wouldn't let me "register" for some reason.

However, I did receive a nice comment from Miriam after posting on their message board there. So, I thought I would post here what I had written. The questions are those asked at Bring Change 2 Mind.


When did you know you had a mental illness?
I never knew that I had a mental "illness". I never saw my issues as an illness, but as a "flaw" within me. I was diagnosed with depression at age 30. For many many years thereafter I continued to work and raise a family, occasionally on medications, occasionally seeing psychiatrists, counselors, etc whenever my "inability to cope" with life became more than I could bare.

Often we are told that depression is temporary and linked to particular circumstances that are happening in your life; so we think that when the circumstances go away, or you are on meds for a while, the "problem" should be gone... And I often thought it was...

Only for episodes of major depression to occur again... Over the years I tried to educate myself and realized that I have had "Generalized Anxiety" and some social phobia all my life... I was afraid to walk to school, for instance, and dreaded it every day, even continuing through my High School years, but never told anyone. I always saw it as being afraid of life, and couldn't understand why I was....

At a particularly trying time in our life, I began to have panic attacks, and (I believe) suffered a "nervous breakdown". As with other times, when things got too bad, I would quit my job for a break and to recoup myself. When I felt well enough to "handle" things again, I would go back to work.

Eventually my once great resume now looked a mess, past employers told of my issues, and the work (and wages) I was able to get degraded.... Finally I asked my MD to put me on Disability and asked that he help me get permanent disability (as I now felt totally incapable of working, but couldn't leave my family without my salary). The MD refused (said he wasn't qualified) and sent me to a psychiatrist for evaluation and help... Actually, HE said he would give me a referral. His staff told me they "had none" for psychiatrists, acted very unhelpful, and left me to fend for myself in finding someone. I had the very strong impression from most everyone I encountered during these circumstances that they felt I was faking this in an attempt to stop working and get disability. Who the hell would want to?!

So I went to the psychiatrist with the determination to try to get Social Security Disability...

I was approved for Social Security Disability when he diagnosed me (for their purposes I guess) with PTSD (Post Traumatic Stress Disorder) because of the years of going through this...

How did you feel after you were diagnosed?
Making the decision to go on disability and "label myself" as disabled with a "mental" illness sent me into a deeper tailspin of depression. My self esteem and self worth were shattered - gone. I saw myself and my life as a failure... to me, to my family, to the world at large. I was (and still somewhat am) embarrassed that I have screwed up and wasted my life and my children's. I have now spent 7? years as a recluse and spend my time with any hobby that will keep the critical voices in my head at bay.

How has treatment helped you?
It took a year to get the Social Security. I was on meds and saw the psychiatrist until that time. After that I felt I could no longer afford the cost of the seeing him just to "chat"... I had given up on life, never mind the thought of any "recovery". Eventually I went off the meds also because of the cost, and because just staying at home I had little to stress me. So I haven't done treatment since receiving Social Security.

What is your message of hope for people like you?
I have no message of hope. I'm very glad, however, that people like you do. Your campaign, and the Minds on the Edge campaign have given me the voice to at least tell my story...

However, since my daughter was diagnosed with Schizophrenia, now Schizo-Affective Disorder, ten years ago and her illness is more recognized as a PHYSICAL brain disorder, some of the misunderstanding is a little better in our immediate family. So I guess that is hope... and a little movement forward.

Thursday, November 12, 2009

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.

Tuesday, November 10, 2009

Gray Days

Hey Folks...
Thanks to those who have started coming by...

I'm in a down cycle right now... having a few days of depression and despondency...

I'm trying to get back... but can't seem to put it together...

Give me a few days please? It should pass.... usually does.... in a few

Friday, November 6, 2009

Who Comes First? (Part Two)

If you read the last post, you know Wednesday was pretty stressful for me, pushed quite a few of my buttons, and left me numb.

On Thursday, Frank had to check on a job. He couldn't drive himself, so I did the driving for another two hour trip. No big deal. Okay, so we're both a little tired and strained from yesterday, but whatever.... We get to the job site and the contractor was not there, hadn't shown up... So a two hour drive back and a wasted day. Get over it.

I spent the rest of the afternoon doing household chores, getting Frank's travel arrangements done for an upcoming trip, trying to relax, and wanting to get a post done on here. But I was too numb mentally to get any cohesive thoughts going. So I was wasting time on the computer when Beth called upset and complaining about her life, saying she couldn't do it, and she should take a bullet to her head. I tried what I always do, talk her down to calm; and I refused to play the game of agreeing with her delusions, which is what she really wanted to rant about. That always pisses her off more. So I was called a liar and one of "them". After 10 minutes of around and around, Beth venting at me, she hung up and I just sat in a stupor.

I'd been feeling a little physically sick since we got home. Now a few hours of colitis kept me from bed until after midnight. My head was telling me to feel sorry for myself; here I am, a basket-case myself, sick to boot, yet I'm still relied upon to be all for all....

'Don't go there... it's what it is... you love them... you'll never stop... If you took better care of yourself, you wouldn't feel this bad.... Why don't you take care of yourself? Why do you make yourself sick everyday? Are you trying to kill yourself? Is "mental illness" really just self-hatred? I have no answers anymore. I'll just be glad when it's over'

Friday morning (today) I woke determined to get to some paperwork, questions, and issues with Frank's health insurance. We're anticipating mountains of bills, of course, and there's the issue of ongoing visits and medications now...

We were already anticipating the $3,000 deductible that went with the plan we chose. We were not anticipating that none of the Doctors or the hospitals (including Dartmouth?!) were "in the network" of his insurance company. What does that mean? It means that the deductible is doubled for any services "out of the network". It means that "out of network" costs are not 100% paid after the deductible, only 70% paid. It means that rather than being responsible for $3,000 for this year/this hospitalization, we will be responsible for $10,000! (which is the maximum - thank the good Lord).

It means that we're in the same boat as a lot of other Americans... though the country, the media, the insurance companies, society in general pushes "health" as being the utmost of importance, they have no qualms at stripping your mental health with worry over how you're going to live while stripping your pocketbook for the rest of your "life". They have no concern for the quality of your life that they're working so hard to preserve and prolong for you.

I won't go into the time I spent on the internet trying to access the insurance company's website to do a simple change of address... evidently their "secure site" is so secure you just can't get the pages to move at all... how I couldn't even begin to use their website without first agreeing to their "terms of service" (Did I just leave myself no recourse for any upcoming problems? Probably. Did I have any choice? No.)

I had already been through one phone call (where they informed me of the $10,000 deductible - but the good news is: we've met it - didn't say we've paid it)... and how I hung up from shock without having done the address change. And so how I had to call them again to do the address change... and how they asked me 'how my day was'... and how I told them not to ask.

By now it was 12:30, I hadn't gotten dressed yet, I was trying to do laundry, I hadn't eaten... and Beth called.... 'Would we buy her cigarettes, and bring them over, as she wasn't feeling well enough to go out'.

So when Frank started in on 'Didn't we just buy her cigarettes? When was that?'.... I couldn't come up with the answer. My mind was soup! And when he pressed the issue.... I got angry and started my own rant. As I said in the last post - I went 'off the wall'. In angry words I told him that I understood that a marriage meant relying on each other... I certainly rely on him for a lot... I understood that being a mother means always being there for your child, regardless of their age, and certainly when they are disabled... But is it really necessary that I answer every little question of our life, including remembering events that he took part in?

And he said he never knows what kind of answer he's going to get when he asks me a question, whether I'll be my sweet, helpful self or whether I'll be the "screaming mi mi".

I guess it depends upon my stress level... And I guess I'm a little more susceptible to that now... because I'm "disabled" with mental illness - I can't "cope". I should take better care of myself.

Who comes first? Certainly not me... Though self-help, counselors and other mental health theories will now tell you... 'you should come first; take care of yourself, so you can take care of others'.... ya right....

Who comes first? Well, I've decided not the insurance companies or the medical bill collectors. Not this time.... not anymore...

All our life we have strived to be responsible, to pay our bills, always, before we even paid ourselves or met our own needs. I worked for more than twenty years, through the depression and a nervous breakdown. Frank worked construction and got laid off every winter, just as we were getting our bills caught up. We had a few times where we had a little, and felt like we were living the average, expected life of an average American.

And we've lost it all a couple of times. Sometimes that felt like we'd had it taken from us. Someone else always had their hand out first, and we did the responsible thing and paid them. Now we have nothing.... Frank's paycheck and my disability check and a daughter with Schizophrenia, with no one other than us that cares about her.

Who comes first? When it comes to what is left of our life and our money, We do. If that means my character has changed over the years, so be it. I'll answer to the immoral and greedy corporate world in court if it becomes necessary.

I'll answer to God when that time comes.

Who Comes First? (Part One)

One of the symptoms or "indicators" of PTSD (Post Traumatic Stress Disorder) is low tolerance for stress, or as others might call it, lack of patience and a quickness to anger. I guess Psychiatrists and Counselors recognize it as a symptom but the rest of the world sees you as strange, weird, or just plain bad. You're not supposed to get angry; not with your family and especially not with the public - not at your job, not at a hospital, bank or other business. You're supposed to have some "self control" - certainly not show your frustration.

Stress is feeling pressured, at least it is for me... and I can't take much pressure anymore. Today I went "off the wall" at Frank - that's what we call it here - "Mom went off the wall" when she exploded in anger. Frank says he never knows if it's going to happen when he asks me a question. I guess I question that.... Perhaps there might be some indicators of the potential... Sometimes (maybe often) they relate to expectations.

(A few things have gone on that I wanted to relate to this topic, but after starting, I found that - as usual - I'm so long-winded that I'm gonna have to do this in parts. What happened at the hospital is part one.)

When I took Frank to Dartmouth for the heart Catheterization procedure on Wednesday, we thought we knew what to expect. The Doctor's office had called twice - a week before and the day before - to tell us. They expected us to be at the hospital before nine a.m. They told us exactly where to park, and how to find the check in center (Day Surgery). They told us the procedure is fairly common now, with no anesthesia. They told us the surgery took "about an hour" and that Frank could go home right after, as long as they didn't find blockages or other complications that would require him to stay overnight. They told us his surgery was scheduled for 10:30 a.m. Having faith and confidence that "all would be well", we expected that we would be out of there and on the road home by noon... or maybe 1 o'clockish at the latest.

Being in the hospital, having surgery, waiting for the thing to "be over" is difficult for all of us. Waiting in a public place is torture for me. But I thought I knew what to expect. And I had myself all prepared to be okay. Frank knew I was nervous and scared, so he said "Yes, Go shopping hon" when they took him in to get prepped at 9:10 a.m.

So I went a few miles up the road, got lost trying to find a certain store, but eventually found it and K-Mart and did a little Christmas shopping. Manuvering through the traffic and the parking garage was a little hairy for me, but I got my nicotine fix in a couple of times. Then I rushed back to be at the hospital before Frank came out of surgery at 11:30.

The hospital gives you a pager (like you get at restaurants). It didn't appear to have gone off, but just in case, I checked in with the desk when I returned at 11:10. "No, not yet", the receptionist smiled, "You'll know it when it does". So I settled down to wait... Should only be another half an hour or so, right?

When the pager still had not rung by 12:20 I checked with the receptionist again.... Frank should have been done by 11:30, and it was almost an hour later.... She checked her computer, saying the only thing she could tell me was that he was "still in the procedure"; that is all the info they can get at their end. So I sat down again and worked hard at staying calm, patient, and relaxed.

The pager went off and the Doctor appeared at 1:10 p.m.; an hour and a half overdue. But, thank God, finally! All went well. YES! The Doctor said: They "found no blockages, his heart appears to have gone back into normal rhythm, and you can see him in a half an hour". He was smiling. "And then he can go home, right?" "Well, NO, not right away. There's the recovery period. He'll have to be here until at least 4 to 5 o'clock."

My face dropped. I started into shock, panic. "FIVE O'clock! Then why do you tell people an hour?" "Who told you that? No, no, no. This is still major surgery and we have to watch him for a while. Who told you that?"

I'm stunned, like a deer in the headlights. I have to wait here another 4 hours? I wasn't ready, totally unprepared. And he wants me to lay blame on someone? And he obviously can't understand the upset that is showing all over me, the panic. "Your husband is just fine. You can see him in a half an hour". "He may be fine, but I'm not. I have an anxiety disorder. I don't understand." (because I can't think straight) "This is really hard for me. What do I do now? Wait to be paged?"...

I move to a corner, the tears starting to come, trying to hang on, do right, not make a scene, act like the mature adult I'm supposed to be. Both the Doctor and I are confused, trying to understand what's going on. "Yes, just wait to be paged; you can see him in about a half an hour." I'm feeling like a total idiot, and the Doctor is looking at me like I am one. Here's my husband just getting out of major surgery, and I'm talking about myself. He turned and left.

I sit back down. All pretense of being okay is over. My face is stone. I'm angry, confused; I don't know what to do, how to calm myself. Struggling to, my face is lowered, I can't look around. Should I go get something to eat? Have a smoke? Leave again? But I can see Frank in a half hour, and he must be starved - they said nothing to eat after midnight last night... so he's had nothing, either. I'll wait.

I spoke to the Doctor at 1:10. At 2:40 (the half-hour having turned into an hour and a half with no page) I finally got the courage to ask the receptionist yet again what was going on..... After a call she said Frank was still in the regular recovery room. When they have moved him to the "Same Day Surgery" recovery room, they would page me right away.

I sat down to wait, having a really hard time now controlling myself. I was just plain PISSED! I hung on until ten minutes past 3 - two hours from when I saw the Doctor, another half hour since speaking to the receptionist. Frank must be starving, I am starving, and don't these people care about those that are waiting? Why lie and blow smoke up our ass when we're already upset? How about some truth? If it's going to be two hours, why not tell us two hours? I could have gone out to get something to eat! Wait, maybe I should go out & get something to eat. Maybe I should get something for both Frank and I. If they haven't fed him, he must be STARVING! By the time I get back, it will almost be time for him to leave anyway.... Who knows when they're gonna page me. I better go do that; have something ready for him, in case.

I left their pager sitting on the stand beside me; (what use was it?), went and found some fast food and returned at 4:20. I checked in with the receptionist and caught hell for having left the pager - 'they were trying to reach me'! When they didn't get an apologetic response from me, they took me in to see Frank. He seemed relieved to see me. His nurse came in, we eventually got him up, went over discharge paperwork, and we left the hospital at 5:15.

Frank was happy to be out of there and happy to see some food (they had not fed him). The drive home was long and dark; the headlights of other cars glared, my head was spinning, my forehead splitting with a pounding headache - BUT I tried not to show it- did my best to chat sweetly with Frank and just get him home!

As I said at the beginning, being in the hospital, having surgery, waiting - is trying for us all. I'm sure many can relate. And maybe some might be in agreement about the frustration I felt with the situation. But usually it feels to me that most of the world would have "handled the situation better", kept their cool, had more understanding on their side for the Doctor, the hospital, etc... and maybe just "not sweat it" like I did...

BUT again.... as I also said, that is what PTSD is like... low tolerance, lack of patience, quick to anger... It's called an illness because years of stress make you predisposed... it comes upon you quickly, physically, sometimes without reason, or without good reason, seemingly beyond your control. And it takes a tremendous amount of work to get it under control.

For help with anxiety disorders and their symptoms, check out the following: the National Association of Mental Illness (NAMI) and the "Learn the Facts" page at Bringchange2mind.org. (For symptoms of a particular illness, hold your mouse over the "Learn the Facts" tab.)

Tuesday, November 3, 2009

Crazy Day

So tomorrow I take Frank to Dartmouth for a heart catheter procedure. If all goes well, it should only take an hour. They just want to check out how much damage was done to his heart, and if he has any blockage. A typical procedure nowadays I guess, so not to worry... I'm trying not to...

It's a couple hour drive for us. So there was the determining the route, just what exits to take, where to park, whether I should wait or go shopping to pass the time.... whether I want to go shopping alone... whether it's disloyal to him for me not to wait in the waiting room... whether I can cope with not smoking during the wait... and IF they find something and like maybe have to put in a stint, then he has to stay overnight, and I have to drive home alone and back again the next day... and oh yeah, I gotta remember to look on the 'net to see if there are any bookstores in that town...

Did I say I'm trying not to worry??? lol The above is not really worry for me, but the typical "round and round" thoughts I often go through... I get in bed at night and do this for at least an hour usually... It gets old.... to get up or not get up?

The Good News is that Beth is doing a little better. Nurse put her on a new med the other day, and she said she thinks it is working... symptoms have lessened some... YEAH!

But then she called first thing this morning... She went to the ER... has been having breathing and coughing issues, heaviness in her chest.... Yes, she's a heavy smoker... and yes, the nice Doctor commented that it was 'probably just smoking' as he walked out of the room, but he in fact found pneumonia... But she came home with antibiotics and a nebulizer, and she's feeling better from that too... So.... I guess that's all good...

And I've found a couple ways to put my blog out so it can be found, and I've got a couple people "following" it, and received a couple nice comments, and found a few blogs in the process that I'm now following... and I read a few of them and made some comments... great blogs!

And I caught up with and reconnected with a friend through the blogs... YEA!!!

And Beth called: "Could I bring over some juice?" Sure...

And I've been wanting to make a post about counting my blessings (which I do, believe it or not) and I started another post on... well, you'll see, if I ever get it done!

Oh, yeah, and Frank has to do some travel for his job in a short while, so there was the scheduling and reservations for that today, too...

And Beth called again... she needed help with setting up her Vonage phone....

Got that done... Yeah! she has unlimited use so maybe she'll do some reconnecting...

And I'm finally getting back to this...

For those who have young children and those with jobs (I DO remember the day) I suppose this is not all that much... but for me as things stand now... it was quite a bit, and a little bit overwhelming and tiring!

So, that was my crazy day. And I hope you'll bare with me in my blog posts, as I don't get things done like I used to...

Hope you had a good day...

Blessings,
P

Sunday, November 1, 2009

Don't Give Up

It probably isn't good for me to write at night. I'm tired; emotionally and physically. So the writing probably tends to be a bit depressive. Actually I've been worrying tonight that my entire blog thus far is quite depressive, and who would want to read it?

But that's part of the point of this blog; to be real, to not force myself to speak from a positive attitude when that attitude just isn't there. Being "out in public" is something I've avoided for oh, about five years now. Actually most of my life... But the public I'm talking of now is putting this blog on the 'net. It's quite scary for me. It pushes my anxiety levels to new heights each time I make a new post, or do anything with the blog. Whatever... that's life for me.

Beth was reading a page describing the symptoms of various mental illnesses the other day on Bring Change 2 Mind. One of the symptoms of PTSD (Post Traumatic Stress Disorder) is avoiding people, places, experiences that are reminders of the traumatic event that made you ill. I guess I fit the bill on that one, as I rarely leave the house now.

Actually I have ALL the symptoms of PTSD. Probably that's why that was the primary diagnosis that put me on Social Security Disability. ha!

I guess they actually stretched it a little for me... The info on PTSD usually states that it is based on a single event that occurred. For me, it was many. Just life, little crisis after little crisis after little crisis until I crawled into a ball and hid myself away from life.

With PTSD, you become anxious even when there is nothing to fear. Even when you know there is nothing to fear. The hormones or whatever still kick in over nothing. So now that happens with me over things most people take for granted: walking to the mailbox to get the mail, jumping in the car to go upstreet, remembering and finding everything I wanted when I go shopping, choosing between items, meeting people, and oh my God! working things out when you have to cooperate with someone else! They all leave me in a panic. Mostly I have to force myself, cajole myself into doing them. Sometimes I just get tired of forcing myself, and sometimes I know I just can't, so I don't even try.

Anyway, the point here is: that is how it often feels to me when I try to write a new post in this blog. Making decisions, and then being okay with those decisions, is tough.

But, I'm doing it. I'm not giving up, totally, yet. I'm fighting my fear and I'm writing this post and I'm not going to let the worry that no one is reading them, or the worry that someone is reading them, deter me. At least not tonight.

You can find the full list of symptoms for PTSD on the Learn the Facts page of Bring Change 2 Mind. You'll also find info there on Fact vs Fiction of mental illness, as well as the symptoms of Bipolar, Schizophrenia, and Depression.

Thursday, October 29, 2009

Who Cares?

When my children were infants I changed their diapers, cradled them, and fed them at my breast. When Patrick broke his wrist, Beth placed her hand fully on a burning wood stove, and Neil broke a front tooth straight off, I jumped to the emergency and saw them through to recovery.

Now that my daughter is an adult and I am sick with depression, anxiety and despondency; how do I help my beautiful girl who is crying out for help, who lives with emotional pain, fear, and turmoil every day. Tonight my depression is taking its toil on me. I'm tired. I'm sick with worry. I hurt that the recent efforts I have tried to make have led nowhere.

I don't have the strength or courage to be an active public advocate in the community all by myself. Beth doesn't have the ability because of her condition. At the moment she is reclusive; shying away from all social and public interaction because her symptoms are dominating every waking moment. Her sporadic sleep patterns add to the problem.

Yesterday we tried to go shopping. "They" were everywhere... strangers in the store making sharp comments aimed at her, the music on the store system specific to her past unhappy experiences, bumper stickers and license plates all "planted" by "them" to hurt her and let her know they were watching, judging, and enjoying their power over her. The paranoid delusion of a network of people conspiring against her, enjoying the living hell they making of her life. Will medication ever make that one go away? Is my beautiful child, now a lovely woman that no one any longer sees, doomed to live this nightmare the rest of her life, alone?

This morning she came over crying, asking me to take her to her scheduled mental health appointment, as she wasn't strong enough to make the drive herself, or go into the drug store to get the next new medication that the Nurse Practitioner hopes might help. It takes time to see if the new med will work, so her next appointment is scheduled for a month away.

As I started to write this post I was crying... working out the words makes that issue come and go... I was crying because no one has read this blog. No one has watched the "Minds on the Edge" video or gone to their website, though I post and post to my Facebook page links and info and ask and ask.

Who cares about the mentally ill? Apparently no one. There are no pink ribbons, no concern over the fact that my daughter is in extreme need of compassion, caring, and support; no uproar over the fact that services to assist her and others like her as so limited; no charitable giving of heart, mind or dollars anywhere.

How do you engage them?

Helpless... I'm helpless and ineffectual as a Mother now, the one that she should be able to depend on. I'm all she has and I'm not up to the task, or getting it done. From my sense of worthlessness I wait and hope for the day that my life is over. From my sense of responsibility and love for my child I pray for some help, some strength and courage for us both, for the determination to go on, and hope that maybe somehow, some way, some day it might get better.

And the cycle of mental illness goes on and on.....

Thursday, October 15, 2009

Motivation, Apathy, and Fear

A bunch of things having been going through my mind the last couple days. So, I guess this post will be a mishmash of them. My emotional state has been one of sadness and worry, and trying to push myself through the tiredness and apathy.

First, I want to say that I appreciate the Doctors, Nurses, Case Managers and all caregivers in the Medical and Mental Health Networks. My last post was about the ineffectiveness of the "system" but that should not be misconstrued as against the wonderful people who work within it. In many cases these organizations and people are non-profits or State run. Funding from the Federal level is miniscule and "entitlement" programs are the first to be cut. When the burden falls to the State, as with Medicaid and the States are in trouble (as they are now)..... It all leads to the programs being notoriously underfunded and understaffed; the people working with little at very low pay.

When you consider where to put your charitable contributions, please consider non-profit mental health providers and support systems.

Something else that is bothering me is having given so much detail (or even talking at all) about Beth's issues in this blog. She is a grown woman and putting the concerns of her life out there leaves me conflicted. How do you erase stigma and the problems of the mental health system without talking about them? It is probably more appropriate for me to speak of my issues here, but our lives are interwoven, of course, and my day to day emotional issues are caught up in hers.

It's taken me (what?) 3 or 4 days to get back here to post again. As usual with me, the initial excitement of the "Minds on the Edge" program gave way fear, insecurity, and doubt.... all the reasons why I can't, shouldn't, or don't want to be involved with anything.

Since I made the decision to go on Social Security Disability because of my mental health issues a few years ago, I have just given up on life. The motivation to do anything lasts little more than 5 minutes. The label of "Disabled" because of mental illness threw me into an even deeper depression of the worthlessness of me and my life. My mind was constantly filled with the failures of my life. Since that time, my daily chore has been to find ways to silence those voices and find things that could make me believe in myself and life again.

I suppose I haven't done very well with that either. To stop the negative and critical voices I find past-times that use my mind in other ways; things that others might consider wasted time, I suppose. I work jigsaw puzzles, play games on the computer, and do what I can around the house.

I've tried to look at my own health issues: years of smoking, lack of exercise, and unhealthy eating habits that have compounded to being overweight, unable to breathe, and the inability to do much of anything physically - walking through the grocery store leaves me short of breath and exhausted.

My embarrassment over it all has made me a recluse. On a day to day, person to person, basis I have only my husband and sometimes Beth and the boys. A few times I've joined online communities but oftentimes those relationships feel anything but "real" or too far removed from my day to day reality.

At the moment, I'm back on Facebook after my son asked me to join so we could share pics, etc. And I'm blogging here, hoping to (what?) offer some insight, I guess, to those who don't know about mental illness; hoping to increase the world's empathy rather than its apathy.

I don't know how much time I have left and I don't know how effectively I will use that time. Like all mothers, a major concern of my life is for the quality of Beth's life, now and when I'm gone. And so, I'm doing what I can, here, and praying it's the right thing to do.

Thursday, October 8, 2009

"Emergency" Treatment for Mental Illness?

This post is the week in review with regard to my beautiful daughter Beth, who has Schizo-affective disorder. She also ended up at the Emergency Room last week, but unlike Frank (see my last post) the immediate "treatment" she received was very ineffective and close to non-existant.

Beth will be 30 in November. We've been dealing with her illness since just before she turned 21, not all that successfully. Part of the reason for this blog is to let people know how the "systems" currently in place for those with mental illness operate.

I've decided to "come out" about mental illness in this blog after watching "Minds on the Edge". Please see my first blog entry for info on that. For these nine years I've rarely publicly talked about Beth's illness - mostly because part of how I've tried to support her through it is not to do anything to increase her fear. Schizophrenia is an illness of fear and distrust of others - the "fight or flight" zappers in your brain are firing overtime, sometimes non-stop, at outrageous, uncontrollable levels and the panic is tremendous. These 9 years have been about trying to reduce that and certainly not increase it in any way.

Meds help (when you get them right) but potential "triggers" are always there in every day, routine things. The triggers are different for everyone. Sometimes it takes a while to learn them, especially with a normally quiet person like Beth, who doesn't often vocalize what's going on in her head.

Beth moved here with us a few months ago, after a relationship didn't work out. She's been in her own apartment, lived with boyfriends, and lived with us off and on a few times over the years. All the moves meant a change each time in health care places and people, making managing her illness and getting her meds right all the more difficult. Each place and person had a different idea of what meds and support systems to try and the ways and hows of what Beth "should" be doing to help herself.

So, this move has meant another change of Doctor and meds. Each time the meds change the transition can (and has) moved her backwards in living life with any semblance of happiness.

We're all stressed at the moment. Beth is moving into a new apartment along with the med change, Frank was hospitalized this week (see my last post) and I'm pretty much always stressed with anxiety. Stress greatly increases symptoms!

One of Beth's symptoms is "auditory hallucinations". She hears people saying things about her. This happens wherever she goes, making it difficult for her to leave the house. A person who passes her on the street, the couple sitting four tables away in a restaurant, other shoppers in a store all have nasty comments to make about her. Perhaps its her weight, what she's wearing, or could even be as awful as calling her a whore or telling her not to bother to seek treatment because she's not worth it anyway.

Reasoning this away does not work. It doesn't matter that people are sitting too far away to have possibly heard them. It doesn't matter that if a comment or conversation was real, it wasn't necessarily directed at her. It doesn't matter that I or others didn't hear it.

Beth heard it. And having heard it, it is real to her. If you know you heard something, would you believe people trying to tell you you didn't? Would you continue to trust them when they tell you things aren't happening that you did experience?

Now please understand that this is a physical condition. It is not "all in their mind". If it weren't physical, medications wouldn't help it. Meds do help it, at the very least to lessen the number of instances and their degree. But stress and med changes (waiting for a new med to "get to its right level") can make it go the other way again, with almost constant occurences and awful consequences.

For Beth, this condition has never totally gone away. At times it has been managible and she has learned ways to cope with it. But not this week.

This week the neighbors have decided she is a slut and a whore. This week the neighbors are constantly talking directly at her, swearing at her, saying these things to her. They have even gone so far as to have come in to our house at some point and placed speakers to insure that she will hear the horrible things they have to say about her. They tell her they hate her and that she might as well die. They come out on their porch to say these things, they turn their lights on and off throughout their house to confirm that they are messing with her mind (because they can and they enjoy it).

So, last Monday this reached a peak. The voices in her head were constant, continual, swirling and screaming, non-stop. They were purposefully abusing her, and she was going to fight back. And fight she did; trashing her room, throwing things around, breaking the window blinds as she screamed back out the window at them to "go to hell, she hated them". She wouldn't stop for me. She kicked and punched the walls, the floor, anything within reach.

I called Emergency Services. With a call-back ten minutes later (you have to wait for whomever's "on call" to get back to you), the lady was able to calm Beth and talk her down. After that she laid on her bed, eyes wide open, very clearly on high alert, but at least not physically acting out.

During the calm and cohesive moments, Beth understands and agrees that her meds aren't working very effectively right now. She works hard to distract herself with the few things she enjoys (drawing), she reads the books recommended to help her cope, and writes in her journal to work it out. But she is so frustrated and disappointed with the mental health system and their seeming inability to understand the degree of pain she is in. The "system" is: Pain or not, she is told she must wait, "see how these meds work", maybe change them yet again if they don't , and all the while learn to cope and work through these things by herself.

Isolation is a big one. No one wants to be friends with a "crazy person".

We talked. She wants to be hospitalized because of her degree of anger and frustration. Her hostility is scaring me and her. She knows it. She fears she may do something to get back at the neighbors and "get herself arrested". "Can't they just hospitalize her for a few days to get her med levels right?"

A few hours later and the voices are back again, threatening a re-occurence. We call Emergency Services again. After hearing that she may do something that will get her arrested, they agree to meet her at the ER and see what can be done.

When we arrive, there are two police officers in the waiting room. In the exam room, the Doctor asks her "what she wants to be done". We wait an hour for the Mental Health "on-call" person to arrive and "evaluate" her.

Now I ask you: If you go to the ER with a bloody nose or broken arm, do they send the Police? Does the Doctor ask you what needs to be done? Do they act like they don't know what to do? Do they wait for a person with schooling of a 9 month Certificate (or less) to decide what that might be?

The Mental Health person arrived, talked with Beth, and "formulated a plan". Beth asked to be hospitalized for a couple days to work with the meds. That couldn't happen at this hospital. There were only two facilities in the entire State for hospitalization. One was full, (only had two beds), and both were at least an hour and a half away. Beth decided that, given the stress I was under with Frank, etc, she wouldn't ask me to make that drive back and forth.

So they sent her home with a sleeping pill, told her to call a counselor, and said they would have her Doctor (actually a Nurse Practioner) call her tomorrow.

When you have a mental health crisis, who do you turn to? Don't expect much from the Medical Community. They still haven't learned that mental health issues are physical.

To experience what it is like to "hear voices" visit Amber Osterhout's website: Gaining Insight. Amber has created a wonderful series of paintings that depict the stages of schizophrenia. Listen to the audio that accompanies the painting entitled psychosis. Then please do check out the rest of the paintings, and Amber's entire site.