2 PANS kids fighting lyme and coinfections, our journey to healing

Other People’s Stories.

I received this email last week and felt compelled to share T’s journey. At 67 he could very well be my son or your child in the future. It also has me wondering how often do people with trauma self-medicate with alcohol or drugs and how can healing begin? How many ways are there to find a way back from trauma? Healing is certainly possible. As the old saying goes “where there’s life there’s hope!” I certainly feel that’s a reality. The following is our interaction. 

Hi there.   You don’t know me and I certainly don’t know your name but I luv the title of your site!  So, if you don’t mind, and if I may be so bold, I’ll refer to you as dancing naked girl… DNG.

Found you via a search on Pfeiffer Inst and have been quite taken with reading some of your entries and the on-going challenge you face in effort to get accurate diagnosis and subsequent help for your son.  Included in the various readings was your 23 Feb. musing where you asked… “shouldn’t we at least start at the beginning?”


But first, let me introduce myself along with a bit of history.  I’m T L from .[removed]… area.  I’m 67 and will be 23 years clean this fall after 27 years of absolute total obsession with having to have alcohol available to me 24/7.  It didn’t start out that way but it didn’t take long either.  How bad was it?  I’ll spare you the drunk-a-log.  Suffice to say I could go to the store for a loaf of bread with firm resolve to return post-haste but not come home for 3 days!  This would be with company waiting to sit down to dinner!  I’ll also spare you the story on how I got clean.  Suffice to say it happened in one night and I have not had an obsession since.  And I’ll add that it didn’t happen and couldn’t happen until all of me came into alignment with the idea that I was completely powerless to alcohol.  Why all of me on that night I still don’t know but I know I got my power to choose back that night.  Probably by simply finally admitting I had none and turning to a God I had little faith existed.  But if he did he was my only ace in the hole so I turned the whole thing over.

No!  This has nothing to do with preaching God to you.  Bear with me…. a couple months subsequent to that night I went to my first AA meeting and eventually found out I’d done the first 3 steps that night with absolutely no knowlege that thats what they were.   I didn’t go to stop drinking.  That was already done.  I went to stop hurting.  As it turns out, hurting was highly likely the reason I started drinking in the first place.  That and a high probability of a genetic predisposition to addiction.  Thus, it didn’t take long for me to become ‘full blown’.

Except for the hurting part, none of that is why I am writing.  You see, they didn’t cotton much to talking about feelings in AA mtgs.  Might be dif today but I wouldn’t know as I quit going to regular mtgs many years ago.  However, I knew it was where I needed to be at the time despite not actually addressing core issues.  It was simply a matter of first things first.  I think it will be also helpful to say that I’d always thought that if I could just stop drinking all my dreams would come true.  Which is just another way of saying all my living problems would be solved and I could find a reasonable level of happiness and feeling comfortable in my own skin.

It didn’t happen!  In fact, all that became more exacerbated so to speak since I was no longer medicating myself with alcohol.  Fortunately I found alternative modalities in those early days in  the form of ACOA (adult children of alcoholics) and CODA (codependency) groups.  These led to group and one-on-one therapy sessions.  All this went on full steam ahead for about 5 years and then tapered off in the next 5 years and morphed into the next challenges.   In addition, I did a ton of reading.

These meetings were what I might refer to as seat-of-the-pants pick-up mtgs.  low, they weren’t monitored by, or for that matter sponsored by, any professional place, group or person.  They were simply regular get-togethers of people with common problems that would sit around a room and talk about those problems, etc.  When I walked into my first ACOA mtg there were probably close to 75 people sitting around in a huge circle in a big room.  It was intimidating to say the least and I almost ran.

Over the weeks, months, and then years it became clear… the common theme… abuse!  Physical, emotional, mental, sexual.  All forms of it that almost always went back to early childhood.  And the trauma to the psyche that results from this.  In many cases this abuse was overt at the hands of damn mean people.  Parents, educators, caretakers, peers.  In many other cases the abuse was more covert.  The result of familial, cultural, social, educational, religious, etc, systems that believed and presented they were doing the right thing and in a loving way.

I’m not suggesting here that you have been abusing your son and that’s why he has his problems.  Not at all.  Its clear you love and cherish him and clear you’re proactive and have gone to and continue to go to extreme measures to educate yourself and find help for him.  And in so doing find help for yourself and the rest of your immediate family and beyond.  As you well know, the impact extends far beyond your door and immediate family to include anyone and anybody who crosses paths with your son in the course of any given day or night.  Its also clear you are intelligent, observant, open minded, etc and I’m sure many who read your site are finding it very helpful as well as heartwarming and heartbreaking at the same time.

However, I am suggesting that I think you are on to something with your suspicions of PTSD as being an operative core factor.  How this trauma may have happened?  I would have no specific accusations to make but I will say this… I’m a believer that current lifetimes are highly likely not one’s first go-round with life.  Iow, I believe we’ve been here before and we’ll likely come back again.  There is a point of view that suggests one of the purposes of life is a matter of learning what one needs to learn.  This would include resolution of issues to the point that they are no longer challenges but have become positive tools for survival and interaction.

If there’s any validity to that then its entirely possible the trauma may have been from previous lifetimes and brought with your son into this one for healing and resolution.  So, that is one possibility that you might consider and, given the open-mindedness you demonstrate in your writing, may have already considered.   And of course, that knowledge is just that.  It may explain the presence but doesn’t offer anything in the way of resolution or relief.

Having said all that, its also entirely possible the trauma is from this lifetime and the result of ‘norms’.  By that I mean pedagogies [sic] regarded as normal because… well, ‘that’s the way its done’.  ‘It’ being child development, diet, discipline, life-style, health care, and on and on.

Then again, it may be a combination of both.  One thing is for sure… classical child rearing is abusive!  There is a woman, recently deceased, that called these pedagogies… these systems of teaching… poisonous because they, in effect, rob the individual of their intrinsic right to sovereign self-dom before they ever have a chance to develop as a sovereign being.  The woman’s name is Alice Miller and to introduce you to her and her work is my purpose in writing to you.

Miller was a Freudian.  Trained as a psychoanalyst but ultimately excommunicated herself from the psychoanalytic community as she came to believe that analysts could take an individual with their issues no further than they themselves had personally gone in regard to their own issues and almost none had gone back to their early childhood development and the pain induced upon them as a result and dealt with it.  She posited that as babies we idealize our parents and care givers and this becomes even more engrained as we move forward in time.  Even when there is a history of obvious overt abuse they still ‘justify’ and rationalize that as having been ‘necessary’.  Or, though they may know and acknowledge that various forms of abuse happened to them, they still must defend their care givers as having done “the best they could”.  That may be true but the fact remains, it still happened to them and the impact is devastating in most cases and holds influence as conditioning that lasts and runs our lives.  Often in ways we have little awareness of.  Forgotten by most of us who have developed so-called coping skills over time.  Stuffed way down in to some deep, dark, hideous space only to occasionally surface when triggered by some event that might take us back to the painfull reality of what happened only to shove that back down even further.  Again!  Why?  Because it was so damn painful we had to repress it just to survive.

Miller referred to the result of traditional child rearing practices as soul killing and wrote many books over her career.  The genesis of her shift into this mission as a champion of the child came when she began dabbling with water colors and doing extemporaneous paintings.  What surfaced were images of a traumatized little girl.  Stuff that would be in context of the scream.  She finally realized the images were of herself.  And so began the journey.  Or to put it another way, images of a lost part of herself yet a part of herself that held the pain that held sway in most everything that had to do with living with herself, with others, with interpersonal relationships, etc, etc, etc.

In part, it was her work that came to me back in those early days of recovery.  There was other stuff as well and ultimately of even more impact for me personally.  But, in my view at least, diving into her work is what helped me own what had happened in the past and that opened space for the subsequent, more poignant and meaningful to me personally, work which came next.  I’ll spare you any detail about that at this point.

I did not and have not read all of her stuff but I got enough exposure to become convinced that the woman was dead-on in her theories and analysis of what she termed poisonous pedagogy.  She did not coin that phrase but she expounded and expanded it in ways no other has dared to come close to.  In fact, the titles of her books alone make the point.  I.e., For Your Own Good, Thou Shalt Not Be Aware, Banished Knowledge, The Body Never Lies, The Drama of the Gifted Child, and so on.  I highly recommend you take a look at her work.  I believe you might find it painfully enlightening and helpful to you in your mission to understand just what it is that drives your son in the ways he is driven.  It certainly became clear to me what had happened to me as a child.

In closing, I believe we search for the same thing DNG.  That is, the truth.  The naked truth.  Our own personal naked truth and that of our loved ones.  One of Miller’s later books is titled The Truth Will Set You Free; Overcoming Emotional Blindness.  And by that she clearly means blindness to the pain that happened to us as a developing child.  That began the day we were born.  That we continue to carry.  Many of us find ways to blind ourselves to that while others have a great more difficulty.  Such may be the case with your son.  I know it was with my brother who finally killed himself when he could no longer find relief in the bottle.  I’m absolutely convinced he did so because he simply could not stand to bear the emotional pain anymore.  For far too many bottom only comes with death.

We are all certainly naked in our search yet we all seem to be possessed with having invented our own peacock suit along the way.  Or to put it another way, our presentation selves.  The modus operandi is of course, survival.  Or, thats how it starts out at least.  In a way its kinda like alcohol in that one day it helps you to survive and the next it kills you.  Personally, it is clear to me that my inner reality and outer realities do NOT match.  Its gotten a whole lot better but I still have work to do to recover my lost self and simply be me and rest easy doing it.  I also highly suspect this is the case with most people and that there are reasons that go far beyond any one thing.  Iow, what Miller has exposed is a big part of it but its not the whole story.  In fact, if I have any problem with her at all it has to do with her limiting to laying all blame on events of the current lifetime when its clear to me we didn’t come here as empty vessels.

Finally, and once again, in no way am I suggesting that you have been or are continuing to consciously abuse your son.  What I am suggesting is that, as children, we… that is, damn near everyone who ever drew a breath… were victims to our caregivers who were doing what they were trained to do and became what had been done to them.  And as adults and parents, we become the perpetrators of the same in the name of life and love with little conscious awareness as to its impact on our progeny.

Here is a wiki entry on miller.  her website.    She is despised and demonized by many for obvious reasons.

In good intent,

T.L. 7/2/11


Hi Tom, I read your email with interest and hopefully in the spirit you sent it – information and something to consider! You are correct I am very open-minded and my only goal in life is to give my son some peace along with the rest of the family.

I am beginning to realize that trauma can affect us in so many ways and what I find traumatic may not be so for you and vice versa. I shall check out the links you gave me, but I am certain his feelings are from his being adopted and the feelings he has surrounding that event.

I am so sorry to read about your brother. I too had a brother take his own life for reasons only known to him, my son is adopted, so not biologically related to my brother, but my fear remains the same for him.

Thank you for contacting me, this is exactly the kinds of dialogue I was hoping for when I built this site, well that and somewhere for me to vent, give other people ideas on what we did, and what was worthwhile or what was a waste of our time and his, you are correct in the notion that some of what we have done may have been less than helpful, where at the time we had no way of knowing that might be the case.

Is there any way you would allow me to post your email (anonymously of course) to the website as I think your experience is one worth reading, many people who find my site are looking for answers and are terrified for the future, I think your insight is very worthwhile. You have ideas and suggestions that might resonate with others, and I would like to share if you are open to that. I would remove your name from the email and leave initials if that worked for you.

Kind regards


-: dng… yes, trauma can have devastating and lasting effect.  my wife is diagnosed DID (dissociative identity disorder) and bipolar.  and a poignent example of what happens when the phyche/self splits in early development.  there’s never a dull moment around here and i’m always challenged to know just who it is i’m talking to at any given moment!  its heartbreaking when someone you love has such a difficult time with things we take so for granted.  like tieing shoes for example.  and yes, i have to deal with my own brand of skepticism as to… is it real or is it memorex.  but, in the end i trust these various selves are true reflections and their realities are valid albeit often not relative to the current, real time experiences.

as to publishing on you site… absolutely.  […].  it would be my honor.  you have quite a site going there and i stand in awe.  not only of that but of your dedication to your stated goal re your son and family.

© Loving the Spectrum