In my wanderings tonight I ran across the Leonard Lopate radio show with a segment on Borderline Personality Disorder. It’s presented as an mp3 file about 24 minutes long. It’s so good to have this treated like the serious legitimate illness that it is. I’ve felt plenty of shame through my life, both when I didn’t understand what was so different (wrong) about me; and as much so afterwards when I did know and we were looked at as the one abhorrent and untreatable disorder in psychiatry.

Listening to these women talk about experiences so totally like mine was very reassuring and freeing. I spent so many years receiving negative feedback even from the mental health community that was supposed to be there to help me, it’s uplifting to know that some people do recognize the pain we feel.

When I basically became non-functioning in California in 1995 I sent my kids back to Michigan to stay with friends of mine. I gave them guardianship for the school year. A few months later I decided to move back to Michigan, and that meant back to my parent’s house. When the school year ended the courts wouldn’t give me guardianship back because I had no job and no place of my own. So they gave guardianship to my parents. (that’s a whole ‘nother story) I was in and out of the hospital and it was the worst time of my life.

I eventually got SSDI retroactively and had the money to rent a house so I went to court to ask for guardianship again. This lawyer who represented my kids was there (my kids weren’t there) and he was totally rude and hostile and said if he had his way I’d never see my kids again. I was floored. Especially since he never once talked to either of them. Miranda asked to talk to him months before and he wouldn’t/didn’t for whatever reason. Considering that she was 16 at the time you’d think he might have considered her input. She wrote him a long letter at one point and he never responded to that either. Luckily for me and my kids, the judge said he saw no reason they couldn’t be back with me. I still have no clue why that lawyer felt that way, except that my diagnosis of BPD was that looked down on. He never bothered to talk to me either so I guess he was into making sweeping judgments.

The hopelessness of that time, both the situation and the medical outlook, has changed much for the better. I was always a good mother, but I’ll concede that I had very little to offer for a while. It would have been nice to have had some support that helped me and my kids together, but that sure wasn’t happening. After the anguish (and guilt) I felt losing my kids like that, all I can say is I am so glad those days are past me.

The mindfulness segment of DBT training consists of “What” and “How” skills,

What:

1. Observe
2. Describe
3. Participate

How:

1. Non-judgmentally
2. One-mindfully
3. Effectively

What Skills

Observe is sometimes a tough one for me. Just notice the experience without getting caught up in it. Have a “Teflon Mind” letting feelings and thoughts come into your mind and slip right back out. Push nothing away, cling to nothing. Notice everything with all of your senses. Be alert to every thought, feeling and action that comes into your mind.

Describe is just that. Put words on the experience. Say in your mind “I’m suddenly sad” or “a thought that ‘I can’t do this’ has just entered my mind” or “my stomach is queasy” Call a thought just a thought. A feeling just a feeling, don’t get caught in content.

Participate is jumping on in. Enter into experiences, getting completely involved. Act intuitively from wise mind. Actively practice your skills until they become a part of you. Practice changing harmful situations, changing your harmful reactions to situations, accepting yourself and situations just as they are. (boy that last one is a toughie!)

How Skills

Non-judgmentally means to see but don’t evaluate. Focus on what, not “good” or “bad”. Unstick your opinions from the facts. Accept each moment. Acknowledge the helpful but don’t judge it. Acknowledge the harmful but don’t judge it. When you find yourself judging, don’t judge your judging! Whew, that can be hard!

One-mindfully means to do whatever you are doing completely. If you are eating, eat. If you are worrying, worry. Do it with all of your attention. If other thoughts or actions distract you, let go of those distractions and go back to what you were doing, again and again. Concentrate your mind. If you find yourself doing two things at once, stop and go back to one thing at a time. Another tough one. How many of you drive the same route to and from work and barely remember the drive?

Effectively is to focus on what works. Do whatever you need to for each situation. Stay away from fair, unfair, right, wrong, should, should not. Play by the rules. Act as skillfully as you can in the situation you are in. Not the situation you wish you were in, not the one that is just, not the one that is more comfortable. Keep in mind your objectives in the situation and do what is needed to achieve them. Let go of vengeance, useless anger and righteousness.

That is it for the mindfulness section but it’s a lot! I’m getting better at this but I think it’ll take me years for it to just be second nature. Then start adding on all the other segments and it’s easy to feel pretty overwhelmed with it all. I am such a work in progress 😉

Sometimes I lie awake at night, and ask, ‘Where have I gone wrong?’ Then a voice says to me, ‘This is going to take more than one night.’~ Charles M. Schulz

“There’s something there.” Those were the words said to me by a doctor in the E.R. in 1999 after a CT scan. I went in because even though I felt fine, I had this strange feeling when I was walking that I was listing to the right. Very weird. They then ordered an MRI and told me I had a brain tumor and hydrocephalus. I was admitted for however long it took to arrange an ambulance to take me to Henry Ford Hospital for surgery. That entire time is pretty hazy to me. Probably because I told them I was highly claustrophobic so they gave me some really awesome sedative for the MRI (which I don’t even remember having).

At Henry Ford they explained that they’d be inserting a shunt in to drain the fluid on my brain. They said mine was a pineal gland tumor and was large enough that it blocked the drainage duct for cerebral spinal fluid. No more nice smooth skull for me, I now sport a large lump on the right. It wasn’t really explained to me until afterwards when I hurt all over that they actually ram a rod down under your skin to make a path for the tube, which they ran from the shunt, down my neck, under my breast, and attached it into my abdomen next to my navel . I can still feel it when I stretch and for a long time you could see it because I was so skinny. That was because I was really sick afterwards. Could not stop vomiting. The doctors had no idea why, but suggested that it was because my brain was unused to a normal pressure.

I healed and life went on with MRIs every six months. However the tumor was growing so something needed to be done. Back at Henry Ford they said they wouldn’t operate but they did want to go in there and take a biopsy. They also wanted me to go down there 6 days a week for radiation, which I just had no way to accomplish. So a friend on my tumor group gave me a web address for Duke University Brain Tumor Center. I contacted them via the web form and one of the doctors called me the next day, told me to send my MRI and they’d take a look. A few days later they called and said “We think it can and should come out.” So April 7th, 2003 off to Duke I go! The surgery took about 4 hours and I was under the impression for a couple of days that they had gotten the whole tumor. They didn’t, it’s attached to my hypothalamus and if they had tried scraping it off I’d have ended up with brain damage. It wasn’t that bad, much better than my first surgery! I was out of the hospital in 4 days and home in a week. Tumor size reduced from 4.6 cm to about 6mm! The surgeon called me on Easter Sunday to tell me it was “The best kind of benign it could be.” And then gave me this hugely long name that I can’t remember or spell.

I have now graduated to MRIs once a year and yes, it’s growing again. However, I think I had it growing for years before I had symptoms, so I believe that I’ll probably die from old age before it becomes an issue again. Here’s hoping anyway!

The whole reason for this post was because I saw my Surgeon’s name mentioned on the news. Allan H. Friedman, MD is the one who just operated on Ted Kennedy. My experience with the staff at Duke was amazing. I’m like most people, not real fond of hospitals, but they were so caring and compassionate.

I gave Dr Friedman a picture I made (being a fledgling Poser user at the time), but I waited until after surgery to give it to him. I didn’t want him to think of it and start laughing right in the middle of things 😉 That man is my hero.

Edited to add links to a couple of my other blog posts
What is a Pineal Gland Tumor?

What is a Pineal Gland?

DBT is dialectical behavioral therapy. That’s a mouthful isn’t it? This therapy method was developed by Marsha M. Linehan And consists of four modules; mindfulness, interpersonal effectiveness, distress tolerance, and emotion regulation. Basically the idea is to teach us skills we didn’t learn. It is considered the most effective treatment for Borderline Personality Disorder. I’m glad someone came up with one because it wasn’t that long ago that we were considered pretty hopeless cases.

In most cases Borderline Personality Disorder is caused by childhood abuse or neglect. People with BPD are more likely to have been:

• verbally, emotionally, physically, and sexually abused by caregivers.
• having caregivers deny the validity of their thoughts and feelings.
• failure to provide needed protection.
• neglected their child’s physical care.
• parents were withdrawn from the child emotionally, and treated the child inconsistently.

I personally can vouch for the reasons behind it but I surely don’t understand that treatment of a child you bring into the world. I have 2 beautiful daughters and I couldn’t imagine treating them that way. There is no understanding the reasons that I can find and I believe that is not important anymore. I just reckon they didn’t like me much and thought that shame, scorn and criticism would somehow make me toe the line and behave like them. The image here shows where we strive to be.

And just maybe it does explain some things. Say your family are all these stoic, logical and unemotional people (reasonable mind). Then along comes a highly emotional, screaming, squalling baby that you have no idea how to handle (emotional mind).

What we are striving to learn is to apply both and end up in the wise mind state. Seems good, but part of me still thinks that I should somehow be able to be a perfectly reasonable mind. Throw those emotions out completely! Of course that’s because I was taught that my emotions were not acceptable. So yes, I am learning that it is okay to feel whatever it is I feel at any given time. This is our reminder for the Mindfulness section to learn to watch our reactions and BE mindful. We do funny little exercises; sometimes drawing, a walk, building a card house, and the point of it is to be mindful in the moment, doing just what you are doing in a nonjudgmental way. I do pretty good but I do get judgmental about my inability to write poetry when that’s the exercise 😉

We go through the lessons and have homework every week. It usually consists of a conflict with someone and recognizing your emotion, deciding what is most important in that relationship (i.e. self-respect, maintaining the relationship, etc.) and the ways of resolving it. The homework part is tough for me because I live like a recluse. Sometimes I pick some nasty time in my past and work through how I could have handled it in a better way.

Now I’ll leave you with a poem I DID write! (just to show off my mad skillz)

Strange Game

There once were these dudes from afar
who were all three tres bizarre,
They went out in full force
to the local golf course
to see if they could break par.

They were atrociously clad
in the most awful plaid;
one carried a purse,
the second was worse,
his shoes made you think egad!!

The third was a swinger,
he’d come back with a zinger
that’d turn your face red.
When I saw them I said
“Ack! Here I’ll not linger!”

So I got out, I got out fast. As fast as I could go sir!
I wasn’t scared, but pants like that I did not care for, no sir!

(last 2 lines from Dr Seuss – What was I scared of)

“Those who do not know how to weep with their whole heart don’t know how to laugh either.” ~ Golda Meir

That depends on who you ask. Many say yes, many more say no. The most sense that I’ve read suggests that the predisposition to certain levels of brain chemicals is hereditary. This article from the University of Michigan Depression Center says both.

I lean more towards the environmental. If you are a child of depressed parents, that’s going to be a learned experience. I’ve seen both of my kids suffer from it, not to the degree I have yet and hopefully never. The important thing is to keep communication open and learn coping skills. I think I taught them better coping skills than I know how to utilize.

I lost my brother to suicide and it almost killed me. I somehow felt that it was okay for me to feel that bad but it was totally unacceptable to me that he did. I personally lay it all on environment though I won’t go into all that on this post.

Heh, such a foreign feeling to just feel good for no particular reason. I was talking to my therapist about it yesterday. I’m used to feeling guilty, ashamed, lazy, depressed, you name it. What’s with this feeling good stuff! He opened his ole textbook and started reading about discounting it when you feel good. Like “well, this will end soon” or “I don’t don’t deserve this.” I was astonished to realize that after feeling bad for so long that I do exactly that. I guess you can say I’m a textbook case :p Awareness, or mindfulness as he calls it is everything so now I know.