Thursday, November 5, 2009

A (not so) Lone Voice in the Wilderness

Dissociative Identity Disorder (DID) is something that is portrayed as scary, bizarre, or something to simply be laughed at.  Worse, and most horrifying of all, people with DID are portrayed as inevitably destined to re-enact the horrors of their past by abusing children or harming others in some way.  Words cannot possibly express the sheer agony and grief that this widely held misperception causes.

I have known well over a dozen people who are dissociative, and have emailed and talked online with dozens more.  None of them - not ONE - would ever consider doing anything to harm another human being, especially a child.  In fact, you'd be surprised to learn how many people in the child welfare and care systems are dissociative or full-blown DID themselves. 

However, for those of us living with it, it's a very real challenge - but also a very powerful blessing in many ways.  These very extreme coping mechanisms are only developed in children who are the most intelligent and creative, at least according to a former therapist trained by a pioneer in dissociative treatment.

Pronouns are a big pain in the ASS when you live with DID.  Using "I" when you really mean "we," or slipping and using "we," and then having people look at you funny - it gets old.  No doubt, the narrative on this blog will switch (ahem, bad pun) from "we" to "I" and back again, somewhat randomly.  Such is life with DID.

While it can be chaotic when things are fragmented and rather random, it's also kinda cool to know that within me are such knowledge or skills as advanced Trigonometry, four years of French, strong tech skills, including the time on Amazon's Site Development team, quilting, painting, apparel design and photography skills, powerful public speaking abilities, and other wonders.

Additionally, the very suffering that caused the DID allows me to have a deep empathy for others in pain.  (Add to that the "psychic gene" that came down to me through my mom's side of the family, and you can understand why I try to avoid large unruly crowds...)

A diagnosis of Multiple Personality Disorder (MPD) - what they used to call the same thing as DID -  was made in 1991.  The strong suggestion to quit working and go on disability came shortly thereafter, and kept coming.  As a mother with two children and a worthless husband, it didn't seem to be an option to simply not work anymore.  Somehow, we carried on...  for over another decade.  Even managed to ditch the useless husband, and give up men altogether, and life was much happier for it.

The tech world was growing rapidly, and then imploding.  I worked for several high-tech start-ups, and even Cisco Systems.  I had at least two certifiably psychopathic bosses, including one who forced me to ~literally~ schedule a restroom sobbing time into every afternoon's schedule, just to cope with his unreasonable demands and a 16-hour workday.  I was in a car wreck on the way to a second-round job interview, stopped at the end of a freeway off-ramp, yielding to traffic as required.  A car coming off the same freeway rear-ended my vehicle HARD, at 40+ MPH, as estimated by the insurance company.  (Even worse, someone else was hired for the job!)

These events culminated in a crescendo of chaos in early- to mid-2002, and at that point it was no longer an option to keep working.  The Tribe had become fractured, further fragmented, and deeply wounded.   Life was a surreal, dark carnival ride, and every face or situation seemed potentially threatening.

The Universe craves balance, and out of this darkness came a gift - the opportunity to shift focus completely, and facilitate healing within ourselves, and potentially for others as well.  The subject of this spiritual journey will be in an upcoming blog post...

Fast forward to Fall, 2008. After ending an unhealthy relationship that Summer, I was resigned to perhaps living alone the rest of my life.  It would be better than living with an emotionally abusive pathological liar!  However, to my wonder and surprise, I learned that a friend I'd known for nearly two years (and whom I very much liked) had deep feelings for me.  When I looked within my heart, I could see the truth; I'd had similar feelings since we'd met.  However, when we'd met, we'd each been with another person, so those initial feelings had gotten shelved.

I'd ended my previous relationship, and now my friend had also ended hers.  Thus, a moment of opportunity...  She took me in her arms, and we never looked back.  We traveled to California late that October, and got married in the Old Orange County Courthouse on October 24, 2008, not long before the accursed Proposition 8 passed.  Ours was one of approximately 18,000 marriages upheld by the California Supreme Court in the aftermath of Prop 8's passage.

In the last year, much has happened.  Life is inevitably a mixture of good news and bad, pleasant and very UNpleasant surprises.  We manage to laugh at most of it, pretty consistently.  Still, some dark alchemy had occurred, a silent milestone reached, because I found myself increasingly anxious and uneasy as the Spring of 2009 bloomed.  (I recently learned that the horrifically abusive step-father came into my life 40 years ago, almost to the day, as of this writing.  No coincidence, I'm sure.)

Over the course of the Summer, I began once again to experience the initial edges of flashbacks - though, in most cases, I was able to block them.  I simply did not want to know, refused to "go there."  I'd done hard work on the subject of the childhood sexual abuse (CSA) and more that I'd endured as a child.  It didn't feel fair to have to open up that can of worms once again - frankly, it still doesn't.

This time, though, I have an understanding that my refusing to deal with these memories and experiences leaves my inner wounded child alters holding the bag.  They've been holding on to these experiences, these memories - the worst of the worst - for several decades.  It's time to ease their burden.  Children shouldn't have to carry the horrors while the adults turn a blind eye.  It wasn't okay for my mother to do it, and it's not okay for me to do it within myself.  Time to buck up, and step forward, "Once more, into the breech..."

I've never been someone who drinks much, and although I did some reefer in high school, I've never been a druggie of any kind.  Especially after my training as a shaman, I believe in the power of laughter, Reiki, meditation, drumming, exercise, herbs, yoga, and attitudinal shifts - not necessarily in that order.   However, in this case, I realize that asking for short-term pharmacological assistance in this area is an example of good self-care.

The few times that the flashbacks have broken through, we've ended up curled up, screaming and crying, unable to speak, the body temperature and blood pressure rising dangerously.  It's been a wonder we haven't stroked out, to be brutally honest.  Thus, it was reluctantly agreed that having even just a minimal supply of anti-anxiety medication for the flashbacks and associated panic attacks would be a good idea, as well as Ambien for the industrial-strength night terrors.

Our regular GP doc is well aware of the DID diagnosis.  He also knows what we've been currently facing - there have been, ahem, "multiple" visits.  For over a year, a headache has been persistently present, ever-worsening.  A trip to the ER in September yielded a clean CT scan, so the good news is that it's likely not a brain tumor.  What this almost certainly represents is the pressure in the mind to "hold back" the repressed memories that are under enormous pressure, trying to escape.  We went through this in the mid-1990s, but not nearly as severely.

Finally found a psychiatrist who would take us on.  Seems like a good guy, and he's certainly better than Dr. Asshat - a psychiatrist who dared to give us hope, only to send it crashing to the ground after two sessions.  Seems Dr. Asshat couldn't figure out HOW to bill our insurance, and so gave up.  Informed us we'd need to find another provider.  (Animal, our inner protector, says "He's just a chickenshit!"  Animal's probably right.)

The new psychiatrist actually (gasp!) LISTENED to us when we were in for the initial visit.   Jo brought a lot of information in printed form, and provided extensive information verbally as well.  The doc took copious notes, and didn't visibly flinch, not even once.  Gold stars for managing his counter-transference!

Now we're in the process of finding a psychologist or therapist.  The reason this comes LAST in the process is that the repressed memories which are trying to surface are under enormous pressure.  Before we open the spigot and risk an explosive outflow that swamps everything and potentially puts us in the hospital, it's smart to have a full team of care providers already in place.  The psychiatrist is affiliated with a large, well-respected hospital in the area.  We hope never to learn about their psych ward first-hand, but it's nice to know it's there.

The process of filtering through the various psychologists and therapists available has begun.  Countless phone calls have been placed, and in one case an email has been sent.  One promising practioner gave her email address on her voice mail greeting, saying that's the best way to reach her.  Well, as one might imagine, it's a challenge to convey our situation in a 90-second sound bite, and thus email is wonderful resource for sharing our situation for her to ponder.  Whether she's brave enough to take us on, only time will tell.

(NOTE: There will be a darkly funny future blog posting about a psychologist who called back and had rather, um, simplistic suggestions for our situation.)

Jo has had years of therapy.  And a couple of those years were in the public mental health system.  In fact, Jo's trained as Peer Counselor through a local mental health agency, and also through META.  But receiving services through the mental health agency meant getting a new intern every year, and then only for about 9 months.  One of the interns we dealt with, Amy, was well-intentioned, but ultimately quite frustrating.  She refused to deal with anybody except Jo, no exceptions.

Now, if one of the other Tribe members shows up for a therapy session, there's a damned good reason - there's usually important information to be shared.  But Amy was adamant on this issue.  The choice of taking this condition or getting no services at all wasn't really a tough call.  It hurt, and was ultimately damaging, especially to the wounded little ones, but we lived with it.  However, we now know enough to broach this subject up-front, and insist on the care-provider's willingness to deal with the alter structure.  If they're not willing, we're not staying - it's that simple.

So, here I am; here we are.  On the cusp of what promises to be gut-wrenching work, but ultimately worthwhile.  Inevitably, the unending dread of something is worse than the thing itself.  No matter how bad it is - and this is a soul-crushing level of horrifying - ultimately, shining a light upon it, and seeing its true dimensions and shape takes much of its power away.

I've heard that many 12-Step programs say something to the effect of, "You're only as sick as your deepest secret."  That thought has been echoing for months.  I had the experience of coming "out" as a lesbian a decade ago, and that was actually anti-climactic - because virtually everybody but me already knew.  I've also had the experience of coming out as someone who follows a non-Judeo-Christian faith, and that's sometime been a challenge - mostly for other people.  I have respect for every faith and spiritual practice, so long as it harms none. 

This situation, me "coming out" as a WE...  This is the big, scary risk.  But on some very deep level, I know that it will also free me.  And, I hold some small hope that perhaps a few people will take some courage from my story.  Ultimately, though I am deeply challenged by these circumstances, I know I will transcend them.

Life is a journey, filled with discovery.  Onward!

1 comment:

  1. Thanks for sharing your coming out as a WE. I didn't know anything at all about this condition. I hope your headaches ease as you find the treatment you want and are able to integrate your experiences in a healing way. Good luck for the continuing journey.