Ambiguous loss and disenfranchised grief

[whiletheseasonspass]

Hello Friends,

I am always looking for ways to deal with grief and I found something that looks like a classroom lecture- maybe for an online college ( I did not look too closely at that - just the material).  indiana.edu/~famlygrf/units/ambiguous.html

There are no answers.  But just as we can feel invalidated by so many not "getting it" - what we deal with- this grief - the loss- this page has a way of looking at what we deal with- emotionally- and validates that SOMEONE is examining it.

We are sad for what our children have not been able to become.  We are upset that their world has been rocked.  We worry that the worst is yet to come.  Some of us live day in and day out - on the edge of the worst that is yet to come-

The page that this link will take you too is not to give answers. It just offers something a bit different about US.  Our ambiguous loss... .  or what they also refer to as disenfranchised grief.  

We talk about how helpless we are on this board to SAVE our child.  It is our CHILD who is the focus here generally speaking but WE are so affected.  Sometimes it might be good to talk about how we are affected.  

I know that there is a spectrum here as some our children are high functioning- work etc.  And some of our children are low functioning if not worse than that.  

How we DEAL depends on both where our child lays within that spectrum and our own personalities.  Some of us are more left brained than others- and some of us are more right brained.  I think that plays a role.  more Emotional vs. more Rational.

We- dh and I have a T who says to try and step back and try to be observers.  Wouldn't that be great for US knowing that we cannot change what is going on- and it is unbearable what has become of our only child.  Stepping  back as observers might give one more clarity and perhaps less pain.  

At any rate- I wonder if anyone would like to talk about how YOU are handling this.  How about YOU.  You matter too.  We do comfort one another here and offer love and compassion or ideas if someone needs opinions on how to proceed next given the new thing that has arisen.  

But do we really ever talk- have we ever had a thread just about US- about how we feel... .  the ambiguous loss- for US... .  the disenfranchised grief.  

Anyway- I am interested in this subject of disenfranchised grief - for that is what I have and it felt good to have it labeled.  There is a book called Ambiguous Loss mentioned in the page the link takes you too.  I saw a small list of reading material there.  I have read- Amb. Loss.  The nugget that I took away- that when it is really extreme- like in some of our cases where our children are present but NOT present- the pain is just as great as when your child is abducted and you don't know what has become of them.  That is the unimaginable.  I was both surprised and validated to have my pain so defined.  But that is because my daughter is on the extreme end of horrible and I am a highly feeling person.  I was born with this personality although a non.  I think I am a non-non-non which might be it's own issue.  My sensitivity works great with helping others- but is really a double edged sword.  Although I used to be more logical I think- less emotional at least albeit a sensitive person- BEFORE I got so broken down and exhausted from too much to deal with for too long.  

How about you all.  Where are you in the way you handle what you are up against.  What does your heart feel?  How are you emotionally day in and day out.  How consumed are you?  Are you able to escape?  How are you relative to your situation?  Are you exhausted.  How do we differ from one another.  How are we the same?  How many of you work?  :)oes that make you feel good to go to work?  :)oes having other children help you- children that are normal.  What do they bring you?  I am not really asking WHAT helps.  But how do you feel?  

Can we get anything out of sharing how we feel.  Is this a worthwhile discussion.  Not a pity party.  Just expressing YOU - how are YOU doing?  

wtsp

Just putting this out there in case anyone wants to talk about YOURSELVES.  

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[griz]

What a wonderful subject.  My grief is overwhelming at times, sadly to the point where there are truly times that I just want to close my eyes and leave this world for good.  On the days I have struggled that bad I often come here where I find people who understand.  I also have done alot of writing ( I am in the midst of writing a book) about a group of people who are brought together by mental illness.  I find writing helps me tremendously.  I work  full time and right now I am the sole support of our family.  This is very stressful however going to work is great for me.  I love my job, have a terrific boss and it takes my mind to a different place.  Sometimes when I am having a bad day it is hard to be at work because I am feeling so sad and all I want to do is find a hole to crawl in and cry.  My boss knows what is going on in my life and I am thankful that when he sees I am having a bad day we just rolls with it. 

My life has been consumed with this for 2 years now.  It has taken a toll on myself, emotionally and physically, it has taken a toll on my marriage and it has also had a tremendous effect on my older nonBPD daughter who is 23.  Oddly enough she went to college wanting to be a lawyer.  Did 4 years of undergrad, taking the LSAT's for law school and then decided to become a crisis counselor and social worker.  That is what she does now.  I asked her once what made her want to do this and she told me that being in therapy she discovered that although she is a good person (which she is) and loves to help people that she realized that her wanting to help people and fix people is really all about her helping her sister. 

In therapy myself I realized my grief.  I remember talking to my therapist one day and telling her how sad I feel because my mom who is 86 and has slight dementia was had been getting a bit worse.  I take care of my parents a lot (86 and 87) although they don't live with me.  It is very hard and I started crying and said to my T.  I don't know why I am so sad.  They are healthy and other then dymentia they are ok. What she said to me was that I was so sad because I was grieving the loss of my parents.  When one has a parent who gets sick and dies or just passes away unexpectantly there is a period of normal grief afterward of the loss. What she explained to me is that I am grieving my parents on a daily basis because my parents who I  once knew are no longer there.  She sad it is like grieving everyday.  I realized from this that that is also what is happening for me with DD.  Everyday I am grieving for the child that I once had.  Everyday is a reminder of how things no longer are.  I am trying desperately to let go of this grief.  To let go of what I thought would be.  To accept DD as who she is is now.  It is very hard.

Griz

[cfh]

This is such a great topic and if we can we should all try to share how WE are.

I will,  just not today because today writing would be too much for me but I will in the next few days.  Warning!  It will be long. 

[momontherun]

This is an excellent topic - so many times we forget to acknowledge how we feel especially when there is one crises after another.

There have been so many losses, grief and anguish in my life - some acknowledged, some never brought up trying to forget... .  

Every once in a great while I  feel so consumed by them I want to change it, want to run - I desperately seek answers: How can I change it? where am I at? how can I deal with it? Many times I do not know it is especially those times I do

everything I can to wear myself out since I can't run - run away from myself, thoughts and feelings but I can change them if only I accept them so I keep busy while I think and ponder then I just sit with the feeling and try to let go slowly exhaling them out of my body, take pride in the days accomplishments especially when I don't want to or find it very hard to get motivated then I realize I do not always need an answer - right or wrong it just is.

I find myself turning to music and singing the same song over and over. Depending on how I feel its songs like Ozzy Osbournes "Momma I am coming home", Phil Vassars "Just another day in paradise", Bon Jovi's "Living on a prayer", Cyndi Laupers "Time after time", Hall & Oates, "Can't go for that", Whitesnake's "Here I go again", A-Ha's "take on me", Pat Benetar's "love is a battlefield", Foreigners "I want to know what love is" just to name a few - I know a bit eclectic however with these songs its safe for me, to get it all out especially when I visualize I am singing them to/about myself.  When that doesn't help, I reach for my distractions trying to create order and a sense of accomplishment to take pride in especially in times of turmoil and stress.

I miss going to work for the escape but not the emotional bs everyone seems to bring with them as it would seem

most would vent to me - the natural caretaker, the one who has it all together. If only they knew or I allowed

them to know the pain and confusion, how scared I was grasping at straws to hold it together, the constant yearning

to run, to survive. Yet I couldn't as it, coldn't let my guard down as it meant surrendering and I couldn't do that... .  

had to be strong at all costs. No wonder I had a nervous breakdown and depressed - so very depressed 10 yrs ago. I sought

counseling to get it all out: grief, loss, fears of repeating my parents mistakes/lives etc. I had a good handle on it or

thought I did until I saw dd15's self esteem drop an manipulative behaviors then came the observations and grasping at straws to get a grip to help dd15 then the jokes came laced with fear: "I wouldn't be able to function without

high stress", "my dysfunctional upbringing prepped me for all of this" then the reasoning: "there are others who have it worse",

"at least now I am not so clueless" then seeing ds11 deteriorate and dd15 spiral even further down which brought on more

despair and desperation... .  I had to get control to get a handle on all of it and keep myself together:"what have I tried?" "what works?" yet in the process I lost myself - consumed with it all, not knowing what else to do, how to overcome, continually grasping at straws... .  I am no longer grasping, learning to let go again, seek help, to care for myself, to allow myself to feel and just be reminding myself to not give up... .  it takes time and understanding - little by little I am making progress and it will

get better.

I am very fearful of the future and what's to come, how i'll handle it etc. However, I see hope - the light at the end of

the tunnel... .  2 steps forward, 1 step back ... .  I am still learning, so are my children and that gives me some sort of peace and contentment.

[lovesjazz]

I feel so bad for our son and the lost opportunities. I feel sad in a group of moms who are talking about how great their kids and grandkids are doing in life. I feel sad for the loss of our family unit.  While all these things I feel sad about, had I not  been through all of this, my faith would not be where it is.  And I do believe strongly that is the reason we are put through these trials. Knowing that makes it easier to bear.

[Reality]

Dear whiletheseasonspass,

This concept is so very helpful... .  

... .  we actively construct meaning and we perceive this to be reality. As social animals, we use the social world around us to confirm that our reality is the reality that others sense and are experiencing. In effect, we establish an objective reality, which we see as independent of ourselves, by confirming it with other perspective takers. The importance of this social construction can not be overemphasized. 

I think this notion of reality construction explains why we find it so healing to be with each other here.  The sharing contains the madness and it becomes more manageable.

Reality

[vivekananda]

it was about a year ago I learnt about BPD. Being a person of action I set about learning as much as I could. Before BPD I was an angry angry person, deeply hurt by the actions of my dd and frustrated at my inability to do anything right in her eyes.

This last year was a year of grieving. I have changed physically and my joie de vivre has leaked away. I am a more sober if not sombre person - I want to have that light person back again, but don't know if that's possible now. I think it depends on my dd and if she can get better... .  

Today I feel in some sort of control. I have learnt that I cannot change my dd, I can only change myself and so I immersed myself in learning about how to improve my communication and how to change my thinking so I can be more mindful. I am currently re-examining my values - my perspective on this I think has undermined my capacity for happiness. I am learning as much as I can, how to be a better person and how to achieve personal happiness all the while still living with the grief of a dd with BPD.

These last 12 mths have put an enormous strain on my r/s with dh. We are getting stronger and working through things, but BPD continues to be an elephant in the room - sort of. Of course, a dd with BPD was something that put a continual strain on our r/s all through our life - we just didn't know about BPD, that's all.

Vivek    

[almostvegan]

I'm angry bitter resentful enraged at how things turned out for me. In the last 10 years I've lost both my parents, my father in law, two aunts who were like grandmothers to me, and a cousin who I was close to. Top it off with the last two years of intense HELL of BPD, financial issues and some legal stuff.  Im not yet 40. Not at all what my dh and I envisioned when we got married.

I feel like the universe has taken a giant poop on my doorstep and then made me step in it! I feel cheated out of what could have been and angry at what has happened.

How's that for how I feel?

[griz]

AV:

I hear you and have often felt the same way.  Life has not greeted my kindly for quite sometime either.  Over the past few years I have watched my parents slowly slip into dementia, they are here but are like having two additional children now.  I am not resentful of them I am resentful of the situation.  I have one sibling who's life has been nothing but a mess and excuses.  For years I had to constantly straighten out his mess and watch him hurt my parents over and over.  Wonder boy (that is my pet name for my brother, since my parents always thought he was the best) hasn't spoken to me in two years.  Do I know why? NO.  The last time I spoke with him I was taking DD to the hospital for psych evaluation and I called him crying and I said I need you, his answer was, okay I will call you back in ten minutes.  I have never heard from him again. He calls my parents once in a while but is has not seen them in years (lives less than a mile away from them) and offers absolutely no help at all. Last year my husbands business started to suffer and quickly went straight down hill till it was gone. I have lost all of my friends with the exception of one who still is always there for me.  It appears that noone wants to associated with the mom of the kid that is a freak.  So as of now I am working a 60 hr work week, trying to keep things in place for DD and have virtually no support system other than my dear friends here on the board.  Sometimes I look across the street at my neighbor and I think I don't get it.  Never worked, has a cleaning woman, her husband does all the shopping, all kids in private school, vacations with her friends at least twice a year (needs to get away from it all), usually doesn't have a nice word to say about anyone and she seems to frolick through life like all is just peachy.  Yea life sucks, I get it.  I am 54. I have worked all my life and so has my dh.  We were suppose to be down sizing by now.  Maybe moving to a warmer climate, doing some traveling, getting ready to enjoy the rewards of all of our hard work.  This wasn't in my plan.  I am debt from medical bills over the past two years and I see no end in sight.  I didn't see a penny of my bonus this year because every penny went to pay off debt.  Am I angry , bitter and resentful... .  You bet I am... .  so I really get it.

Griz

[cfh]

I'm a different person now.  :)H and I tried for 5 years to get pregnant... .  he had twin boys who died shortly after they were born and his marriage ended in divorce. We both had lots of surgeries but no luck so we got excited about adopting.

My mother was undiagnosed bipolar so I was the mom in the family.  I had such loving parents but there was always such drama and chaos.  I remember jokingly telling dh that I hoped our kids would describe their childhood as "kind of boring".

When first ds (29) was born I was a new mom so nothing seemed too unusual.  We adopted ds#2 13 months later and that's when I started to realize something was not right.

So I've been at this 29 years.  29 years of trying to get people to listen to me, help me, feeling frustrated, angry, sad, depressed, hopeless, embarrassed, isolated, lonely.

When ds #2 was born I felt like I was given a gift (I still do).  He was so normal, so sweet, so loving, so smart, so emotionally intelligent.  And he was a good brother, he tried SO hard to make our lives easier and I have deep regret that I didn't realize the strain he was under and that he wasn't coping well.

By 14 he was doing drugs to cope and by 18 he asked to go to rehab. I hope he'll be OK.

My marriage is sad.  That's probably the best way to describe it.  We love our kids so much but when we look at each other I think we just see sadness.  There's not much to laugh about.

I was never cynical but I am now. I went to a wedding recently and their vows were all about how wonderful life will be, ain't no mountain high enough, nothing can hurt us blah blah blah.  I don't like that new part of me.

I'm pissed at all the doctors who said my ds needed more structure, at all the teachers who said if we didn't get tougher with him he'd be in big trouble, at being reported to Child Services, at therapists who were stupid.

Then finally at 15 a pdoc sat us down and told us that we should prepare ourselves for a life without him because he's not going to make it.

Right in the middle of taking Family to Family a couple of years ago my company closed and I haven't worked since due to the economy.  I loved my job and I miss working but the silver lining was that I started volunteering at NAMI.

I'm not angry anymore I'm just sad. I don't think I'm depressed the way I was in the past but I have a big problem with anxiety.  I have an RX for Xanax for panic attacks.

I know I'll never be that person I was when I was so excited waiting for the phone call that a baby had been born.  That baby is in jail now.

I cope by getting together with the 3 close friends that know the whole story and don't judge. A few days ago I got on a bus and rode for 3 hours then got on a train for another hour to have dinner with them.  That's how important they are to my sanity.  My dh can't help me with that.

I'm 63. I guess I thought at this point life would be pretty nice but it's not.  The house is on the market because we owe out so much money for all the failed RTC's.

I'm so sad for BPD son because he came into this world with so many problems that no one had a name for... .  he's so smart and I grieve for what his life would have been like if his bio mom hadn't done drugs, if his brain wasn't damaged, if there had been early intervention.

My non ds makes me happy but sad too because I know if he had grown up in a normal house he'd be just fine.  What a great kid but he also has his demons.

Not sure if I'm getting off topic.  

In my darkest moments I have wanted to not wake up the next morning.  Though I've never been suicidal I have thought a lot about how nice it would be to "have it over with". When my doctor called last year to say they got all the cancer out I wasn't relieved.  

On the outside I look OK but I'm really not.

[lovesjazz]

Cfh,  I totally understand. There have been many times I was disappointed I woke up.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[mary290]

It's funny you should post this thread today (I am reading it for the first time just now) b/c about an hour ago I looked at my dh and said "am I ever going to not feel sad again?"  I am 100% consumed with my dd.  I think about her constantly.  I miss her ridiculous amounts.  And I grieve for what we should have right now:  a great mother-daughter relationship.  Instead she hates me, hates dh and in general is so angry at us right now that we have nothing.  I feel like I have lost a child without her dying.  My heart breaks for parents whose children have died.  I kind of feel like for those of us with BPD kids it is like a death too.  But without closure.  And with lots of worry, fear and heartbreak.

I used to be a happy person.  I look at the glass as half full.  But my disposition is not quite so sunny these days.  I never wish ill on anyone and do not consider myself a jealous person but there are a million ways I am reminded of my sadness and my dysfunctional family.  I see the color yellow (her favorite color); holidays are nightmarish especially Christmas with all the smiling, happy families and newsletters describing all their accomplishments and good happenings.  I like to decorate and I follow several online blogs but so many of the moms describe how happy their families are and how their kids just complete them.  Bleh.

My health has crumbled.  I had a heart attack in 11/2011 and I had no warning syptoms.  I was 49, a size 6 and a non smoker.  I was not on meds for anything.  My doctor called it "broken heart syndrome."  Guess who I got that from?  I don't work anymore and was a SAHM for most of my kids' lives.  I ran a business from 08-11 and luckily we sold it right before my heart attack.  I am lucky in that I have a wonderful husband and we are financially sound.  I am so sorry for these who cannot say that as I cannot even imagine having that on my plate too.  They say God njoy gives us what we can handle.  From what I read from your posts, you all are a remarkable group of people and your kids are blessed to have you as their parents.  We love them despite their illness.  I know for me, as I read more about BPD and realize it is a mental illness, then my anger at my dd dissipates and I am left feeling more sorry for her. 

I am trying to walk everyday for my health and I watch what I eat.  My other 2 kids bring a lot of joy to me.  They are not perfect and my d16 can really give me a run for my money but she is NOT her sister and so I think I can handle it.  Anyway, sorry for the long post. 

Ok, just one more thing:  the feelings of suicide especially before I realized it was BPD, were very strong.  I am Catholic so that is not an option for me but boy, did I think about it.  Lots. 

[Survive2012]

I am not grieving yet, I have a long way to go before grieving! I wish I could grieve... .  

I am desperately fighting to get my son back... .  I just can't believe he is ill (and am not sure since undiagnosed yet). My husband says it is all our fault. I do feel guilty in a way, but I also am sure I could do nothing to change this unless I had had a warning.

Everything was going well: two happy kids, working well at school, full of friends, a loving husband, no economic problems ... .  Then, all of a sudden,our dog dies and our youngest son starts not wanting to work nor to go to school any more. Then he starts saying "it is all your fault" (me, the mother). It has been going like this, with ups and downs, for three years now (now it's a down, a stable very "down". I just am still not accepting he is ill, I can't believe it. My husband and I often wish we could just die to end all this suffering.

I understand all your posts, and I am aware my situation is easier than many of yours... .  

Thank you for sharing your feelings... .  I couldn't share this with anybody else... .  

[Reality]

Dear friends,

It is extraordinarily difficult to see a child, young person de-railing over and over again... .    It is a cruel reality... .  

If it is possible, I think the only answer is to take stock of the unusually complex and painful reality and then to let it be, so that one is not drawn into the crazed undoings.

It is what it is... .  

What would I do for a child, who had a terrible situation like mine?  I would be so very gentle, kind-hearted, patient and non-judgmental and provide a nurturing womb for him/her?

I would try to be that community for the child... .  if there were no others. 

So I try to do for myself... .  

Disenfranchised grief... .  well, I shall franchise it myself, step by step. 

If others do not want to be part of my story and life, pity their loss.

Reality

[whiletheseasonspass]

Dear Reality,

Thank you for your contributions to this thread and to so many other threads.  

I don't want to blend this post with another topic but as was just reading through the thread you reactivated about BPD and Apergers.  Something you wrote really hit me and I find that having another piece of the puzzle help me and this what you wrote IS a piece of our puzzle.  

My BPDs23 is an abstract random thinker, instead of logical sequential, which totally ties into the seeming lack of problem-solving skills.

I don't want to be talking about my dd for in this thread I do mean to talk about me and my feelings and how I am affected and it all is NOT just about my dd.  But I have to say that My dd is SO MUCH a radical and abstract random thinker- and is with her partner who is also the same kind of thinker and they are joined at the hip- so the synergy of illogical lack of problem solving skills could not be higher unfortunately.  I kept wondering WHY WHY WHY does my dd NOT do what is logical in dealing with her physical illness that affects her in debilitating ways.  What you wrote gives me a huge piece of the puzzle.   It does not alleviate the pain of what dd does NOT do that might help her and the impact on dh and me but it gives me some insight.  And I am very grateful for that insight for in time it might help alleviate some of the pain.  Insight can be like that.  

That said- THANK YOU to all of you who have posted on this thread and have done such a good job of expressing your feelings and I still need to describe more in detail why I do have this intense unending consuming grief- as I started this thread .  Maybe I can only do it in bits and pieces.  For there is much more than just my dd that has put me into this state.  

When posting  this wonderful compassionate board- when writing about myself- I have worn my emotions on my shirtsleeve throughout the years of my posting here and have repeatedly talked about my emotions.  

Almost Vegan spoke of many losses and AV your last sentence said it all to me for your emotion in that last sentence is how I feel.   I have had many losses too over the years.  Betrayals too- by people I trusted- all non BPD dd related.  On top of the loss of dd to this illness.  Prior to all of that.   Even the loss of my own health which still continues.  But the loss of my dd to these illnesses made the loss and knowing the quality of how she lives her life- how for a long time her living conditions have been so painful and the suffering she endures has made my own ill health exascerbated by the incomprehensible things that have gone on- the suffering over my dd- my own inability to accept this- waking up each a.m. with a feeling I don't know how to face the day... .  and not wanting to go to bed for I know I will have nightmares ( I have severe PTSD)... .  

AND that is not all there is.  I can honestly say that I have been living a Full Catastrophic life for so many years... and it goes beyond my dd and my health.  But outside of my dd- the things that have taken place- that have been many crises- has affected my health  - worsened it.  I read about others here who have BECOME ill from the stress.  So I can believe that the catastrophe's I've lived with can worsen the already ill health I have and this really holds me back from living my life and THAT is so frustrating.  I am so tired.  But I am depressed too.  And that grief!  

I can't even write it all down or I will have a nervous breakdown for I will be too traumatized.  I have had horrible things happen- one trauma after another since I have been a child.  But there is one thing that has happened that I need to write about and I will but not yet- not today.  

ONE THING out of many things that has happened is that someone who we barely knew lit our house on fire- not the one we presently live in.  Not a relative but someone with problems that chose US as the ones for his misplace anger.  Then there was the period following this lighting of our house on fire where we lived with a threat on our lives by this individual that our house on fire.  

I have had cancer... .  traumatizing and scary to be in those shoes- and not the illness I refer to above.  I hope it does not come back because I want still to live the life that has not quite been able to manifest for me... .  once I re-figure out who I am.  


I could easily be writing on the relatives board because of my NPD FOO.  Years of therapy for that... .  I did not even know that I was being abused- I thought if only I would be a better person- I would fit into the family. I would be loved.   This is something I have needed for a long time to unload about- and could write a book about all of that- and if I wasn't scapegoated enough that whole thing-  their behavior also involves cruelty and unfeeling acts in one case in particular directly related to we are dealing with the pain of our dd.  Then when I tried to speak up about it - I was the bad guy and my favorite brother turned on ME - for me walking away from the sibling who abused me all of my life in horrendous ways and our father endorsed this as she was HIS abuser to me by proxy- yet he too did a number on me.  This fav brother- did not want to hear or believe and I thought I could turn to him but NO. To him it was  I who  tarnished the family by not keeping the family intact- by NOT any longer taking IT - the bad stuff... .  that is the way they look at it... .  at me.  The pain of this has been so difficult. But for them to use my dd as a pawn- the one(s) that did... .  that was too much.  I am still trying learn how to live with this.

I educate myself about N FOO's as much as I can but there is not that much out there for family systems in the way that I need.  But education myself- although bringing understanding at least cerebrally and the T lets me know it is not me- but does not take away the pain they have caused or the loss of the FOO I THOUGHT I had when I was naive and maliable.  

Anyway- I am not sure how well written this all is... .  I am just selecting nilly willy- pieces of a huge story... .  and maybe not even doing such a great job.   I am never angry toward dd.  I tell her all of the time I love her and am very supportive of her emotions while trying not to enable.  She cries to me and I hold her even if we are not together- but are on the phone.  Still I leave her and feel like a spear is in my soul... .  

I never thought my life would be like this.  And I haven't even explained yet how exactly how it is.   There is just too much.      I find myself too traumatized to write more presently.  I thank EVERYONE who has posted on this thread.   Even my dh- he has so much pain and if I don't have enough pain I internalize his ( the HSP can have this "attribute".  He says he wakes up each morning- sick to his stomach over dd, dark, shocked, and more.  But he goes to a job he loves and I have no sense of purpose presently.  

I need to have something to get up for  - I do the best I can being so exhausted... .  to re-find ME. But I am not young and time if flying by.  I want a ME.  

Each day I am someone else or somewhere else.  Today I am straddled between all that has happened  and needing to have the rest of my life with something that is ME.  A passion.  I used to have passions that were about me.  I used to be creative but that is blunted.  I used to be able to multitask but now I am lucky to get anything done.  

I want to feel less like that fly stuck on the flypaper.  Sometimes I have felt like several flies at once stuck to the flypaper from too MANY crises-that I cannot change-  if not one after another but overlapping.  One can only take so much.  And this is one time I am not going to say sorry for writing such a downer post.  For this is what the thread is about.

Thank you all.  Thanks for having this bpdfamily.com place to come and thanks to all of you who understand and DO NOT JUDGE.

 

wtsp

[sunshineplease]

I appreciate the topic.

I grieved for ud17 when she was diagnosed with cancer at age 3, for her pain, for my pain, and for the "normal" early childhood she lost.

I grieved for her again at 8, when she started puberty, and 10, when she got her period (and sobbed) and was robbed of her later childhood.

I've been in "low simmer" grief mode during her middle and high school years, which have been hard for us all, as she's gone further and further down the rabbit hole of unhappiness.

Doing the work of grief while simultaneously doing the work of healing our family dynamic is a very difficult task. Most of the time, I don't seem to have enough hours in the day, or enough glucose in my brain. At the same time, I've learned that I've been living with sadness so long that I've allowed it to rob me of joy and purpose. What do I want out of life, for me? I believe if I can find that joy again, I'll be better able to re-enfranchise the grief by being clear in myself about my goals and my path -- and how I go "out in the world" with my struggles.

Big hugs to all, and gratitude, too.

[Reality]

To clarify my last post, when I was talking about doing for a child, I didn't mean my child, I meant as a teacher, how would I treat someone, who had my life.  Ever so gently and kindly... .  

You know, I am not one inch religious, yet I spent a year in a community, working out my thinking on the existence of God, I mean the Judeo-Christian God, as described in the Bible.  I love all the violence, hangings and be-headings described there, as it fits with reality.  Actually, that is not totally true.  I love being cheerful, successful, with an on-track life, yet that is not my reality, so I take great comfort from the beatitudes.  Blessed are they that mourn.  However, let me repeat that I would much prefer to be happy, then blessed... .  Yikes... .  however... .  

A so-called friend was telling me yesterday what she thought God wanted me to do.  What a joke!  I asked her if she seriously thought she knew what God wanted me to do!  Because she continually disenfranchises my grief, I have posted a note by the phone to not speak with her. 

I love Brother Lawrence, working humbly in the kitchen.  The simplicity.

I do have this intense unending consuming grief  Maybe I can only do it in bits and pieces.  For there is much more than just my dd that has put me into this state. 

I could easily be writing on the relatives board because of my NPD FOO.  Years of therapy for that... .  I did not even know that I was being abused- I thought if only I would be a better person- I would fit into the family. I would be loved.   This is something I have needed for a long time to unload about- and could write a book about all of that- and if I wasn't scapegoated enough that whole thing-  their behavior also involves cruelty and unfeeling acts in one case in particular directly related to we are dealing with the pain of our dd.  Then when I tried to speak up about it - I was the bad guy and my favorite brother turned on ME - for me walking away from the sibling who abused me all of my life in horrendous ways and our father endorsed this as she was HIS abuser to me by proxy- yet he too did a number on me.  This fav brother- did not want to hear or believe and I thought I could turn to him but NO. To him it was  I who  tarnished the family by not keeping the family intact- by NOT any longer taking IT - the bad stuff... .  that is the way they look at it... .  at me.  The pain of this has been so difficult. But for them to use my dd as a pawn- the one(s) that did... .  that was too much.  I am still trying learn how to live with this.

I educate myself about N FOO's as much as I can but there is not that much out there for family systems in the way that I need.  But education myself- although bringing understanding at least cerebrally and the T lets me know it is not me- but does not take away the pain they have caused or the loss of the FOO I THOUGHT I had when I was naive and maliable. 

whiletheseasonspass,

You are describing my foo.  It has taken the death of my son and my family's total disregard for that tragedy for me to realize how beyond traumatic my childhood and adulthood in my foo was. 

Reality

[whiletheseasonspass]

Yuck.  I wrote something on my last post I wish I did not write.  and it was

And this is one time I am not going to say sorry for writing such a downer post.  For this is what the thread is about.

I wrote initially I did not mean for this to be a pity party and here I wrote from tiredness something something that I wish I had left out but by the time I realized it- the modify time was up or I would have removed it because all who posted their feelings were so honest- and I don't know- just wish I had not put that there- I feel it detracts from what this thread was meant to be.

Anyway- now I feel better writing this about that sentence.  

 

wtsp

[whiletheseasonspass]

My Dear Reality   

I do feel for you- thank you for coming forward.   

It wasn't until my dd became ill and then things got worse and worse did I realize the extent of the dysfunction (for lack of a better word- for dysfunction seems so understated) - of my FOO - their cold-heartedness- their narcissism- although it took me until nearly 30 years old to realize that I had been abused.  Sounds unbelievable - but I honestly did not know. 

Here I am at my age (late 50's) only NOW realizing in which ways I was actually affected by that FOO  and possibly my dd inadvertently.  I have noticed too that the rare times I speak about my FOO that sometimes someone comes forward to express that they too have had this kind of FOO.   Like you just did. 

I am going to send you a PM about a book someone wrote that I bought... .  she used to write on this board and she is brilliant.  I think if she wanted to she would have put her title in public here right on the board but this board is about parents and hers is a lot about her FOO and more.  At any rate to respect her privacy I will PM you the name of her book. 

 

wtsp

[momontherun]

You are all so brave to post so openly. I personally cannot delve into any of the deep pain from my past - to even mention it brings back memories I'd rather forget... .  years of my life lost unable to speak about as its too painful, certain places or talking about certain people is just too traumatic for any of us in my FOO that has stuck together after many years of refusing to even acknowledge the existence of each other and only then for me, it was to give my children a sense of family. They have their own questions and deserve some answers like why a subject gets changed rapidly, why granny/myself has a million mile away stare, why some are really jumpy, why I have trust issues with men, why there are hardly any family photo's of my childhood etc.  Those things/events helped mold me to the person I am today yet that is not our lives and I will do/have done everything in my power to keep my own children from ever experiencing even a part of that kind of life. This is what gives me strength however, it also is my downfall as I withdraw especially now dd15 and ds11 remind me so much without meaning to or even knowing why - its not their fault or problem. It is mine and someday, I will really deal with it in terms other than generalizing.

We are all different stages, have different experiences, lives etc yet much of what is shared is so much the same its a bit eerie. While its natural to go back later and say "OMG I didn't mean it that way" or apologize in one form or another I feel this topic is exactly what is needed - about how we personally feel in this place an time, realizations, a chance to be vulnerable, building upon a deeper connection with those that honestly and openly understand and THAT is nothing to apologize for. However, as survivors that is exactly what we do


     

[LearningToAccept]

I am having a very hard time with dd28's decision to live with a friend now that she has separated from her dh.

Her last words to me were "I can't stand you."

Her  friend has taken over dd28's life. Dd refuses to have a relationship with me or dd10. Dd10 misses her sister and my texts to dd28 asking her to please call or FaceTime her little sister are being ignored. 

I feel so rejected by dd28. I am so hurt. Dh says dd28 needs time for herself after a few years in a rough marriage.  I hate the depth of dd28's ungratefulness and her ability  to create pain  in my life. I hate this cross I have to carry. I have found meaning and purpose in my struggle but right now I am just too hurt to see past dd28's current obsession with her friend. In my home she has a bedroom with a comfortable  bed, computer with Internet access and a flat screen tv with over 300 channels. She had doctor's and therapist's appointments scheduled and appointments at the social security administration for a disability determination interview. She could care less. She is choosing to sleep on an old sofa in her friend's living room, living out of Walmart plastic bags. She withdrew $300 from her husband's acct at 1:00 am one morning, on his payday. He called to day she stole his $$ like a thief in the night. She  doesn't answer my texts or calls. 

I was filled with hope when she decided to leave her husband and their volatile relationship. I said good for you you and congrats on putting yourself and your needs first. I went to home depot and bought paint for her room, I upset my  sciatic nerve by rearranging the furniture in her room. Bought her nice outfits and told her how happy I was to have her back home.

She said she can't live with me because she cant stand me. She ignores my dd10. She wants an independence she isn't  capable of achieving because of her many limitations and is clueless about that.

When I first wake up in the morning I have a few moments of bliss, until the thought of dd28 enters my mind. I am suffering from depression, imnsomia and  a dreadful fear of what's to come.

I am glad I have this place to come and share my feelings.

Wishing everyone here hope and strength

Learning 

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[MammaMia]

We have lots of company don't we?  Mental illness affects the person with it and everyone around them in profound ways.  When things are good for them, it is like a wonderful gift.  They are happy and coping.  Relieves the pressure on us temporarily.  However, it never lasts.  The crises return again and again and again.  Always our fault.

It hurts to know we are doing everything possible for a person who often sees us as the enemy.  They have absolutely no concept of what their illness is doing to us... .  only what we are doing to ruin THEIR lives.  BPD to me is like cancer of the soul.  Malignant.

I have bouts of dreadful fear for today, tomorrow, and forever.  We have to accept the fact that we have very little control over how our beloved BPD thinks.  Rational or irrational.  I pray constantly for guidance and protection for my BPD son and myself.  I pray for hope.

I too am on medication for anxiety, depression and panic attacks.  So tired of trying to sort through threats and delusions from my son.  We must accept the fact that we cannot make everything better.  IT IS IMPOSSIBLE!  We need to try to keep ourselves healthy and to find comfort from the rages and craziness.  It would be so easy to fall into the depths of their illness... .  but we CANNOT allow that.   

There is comfort in the fact that others REALLY understand our feelings. We are good people caught up in a tornado of emotions.  Our world does not contain much stability or peace... .  we need to create it.  We also need to accept the reality of this horrible disease and the fact that we have not caused it --- but we must deal with it as best we can, and we  WILL make mistakes.  We need to attempt to change what we can for the better ... .  and strive to do the best we can with the rest - fully recognizing NOTHING will ever be perfect. 

God Bless us all.  May he provide us with comfort and support in our times of need.

[llbee814]

The grief is all-encompassing and neverending.  The sadness is just overwhelming and paralyzes me.  I function so much better when I'm feeling pissed off (on a simmer,  not a boil,  .)   It also helps me when I can maintain an attitude of not taking some of this crap seriously.  My sense of humor is soo dark!  I know I'm lost.  Some days I plan to fight to find me.  Other days I, too, just wish for endless sleep.  And that's with meds!  How f@&"khd up is that?

[cfh]

Was it Jackie Kennedy who said "you are only as happy as your unhappiest child"?

[whiletheseasonspass]

So after writing my share of how I felt- which always takes me down to speak of it and some of it I could not even speak about- I did feel traumatized.  When I go there or THERE or there or there ( I have lots of choices re: losses and pain unfortunately) it just shakes me to the core and still today I feel shaken inside. 

In my life- the way it is- I can find moments of pleasure or a window of moments... .  but the STUFF never leaves me entirely especially about my dd but besides my dd- all that I am unable to name plus the FOO injustices and Narcissism and more- just accompanies me- like a side car full beyond capacity connected to a tired old motorcycle trying to get up a hill.  I am sure you can guess that I am the motorcycle-

I never imagined that this sidecar could get so full.  I guess I always had that sidecar- the way I grew up- but it never felt like this- AND I have never felt so exhausted and broken down as I do.

I never imagined my life without my dd in it the way others just have their children- I never imagined my dd in this "far away land" and me feeling sometimes so zombie-like... .  blinking at the sunlight so stunned- and hurting. 

So that all said- I have thought about something for a while now and I can't go on like this.  I am about to get my pen out and write a check ( luckily - minimal $$ ) for some non-credit courses I am signing up for- upcoming (if enough people join for they sometimes get cancelled for lack of enough people).  But it will be a start-  just a few weeks of this class (art) or that ( a couple of exercise classes- hope I can do the exercises- so tired and unfit but I can go at my own pace at least).   

The purpose of this is to get to be with OTHER people in the flesh- and to hopefully get my exhausted brain on other matters- and my body working to maybe - just maybe - get some endorphins up.

Mostly though to have something to wake up for- knowing I have to get out of bed- whereas I wake-up with no purpose. 

I hold out hope- that this- might serve as as the first step  to finding ME - and eventually with more exploring- a sense of purpose- not sure how this will work- to find ME-

but it used to be more ME to be active instead of paralyzed with grief ONLY... .  and consumed with troubles and feelings of betrayal (FOO).   I may also check out a local exercise facility to get involved with some longer time aerobic exercises.

I have noticed that when I DO exercise - like walk that I DO feel better afterwards... .  

I am alone too much - and it really feels terrible on top of everything else. 

Anyway- my sidecar will not get emptier- but what will come of all of this- I hope something improved than what is going on presently... .  distractions... .  to a degree... .  and not being so alone - physically alone- (even though I do see some friends socially - here and there)- I KNOW A HUMAN NEEDS MORE.

One more thing- I am going to get back into playing classical music- I like soft pieces like - or concertos by Mozart for a single instrument or two instruments- and some Bach. And as it is a favorite of many-  I love Moonlight Sonata-

Whereby exercise quiets my mind- I DO NOTICE that music does something good for my soul... .  certain music.  Even hearing Kelly Clarkson sing My Country Tis of Thee this a.m. for Pres. Obama's inauguration- so mesmerizing - her voice - her style combined with such a beautiful Patriotic song. 

cfh- I did hear something like what you quoted- but it had to do with a relationship... .  I think I heard this on Oprah- years back- someone said- like "in a relationship" your relationship with someone can only be as healthy as the least healthy person in the relationship".  And I think THAT was more about with SO's or with friends or maybe with siblings.  But what you quoted- rings true to me about a child.  A CBT T said to me- the difference between having one's child grow up happy and healthy and out of the nest with a good solid footing- and having the kind of painful outcome of what happened to our dd (just speaking of my world- dd, dh, me)- is the difference between joy and torture.  Yes- she did say torture.  Isn't that awful?  Not that she said torture - but at times- lots of times I DO feel torture. 

So how to I get that balance- with that lovely sentiment about torture   AND with the FOO stuff and other things that I cannot name.   Pray for me my friends as I will pray for you to find your own way- but if you pray - for me- please pray that some of what I am going forth with- will make my slice of pie exist - and perhaps if I add even more- the slice of ME pie- will grow larger - rather than how it has been - i... e making the whole pie about all of the bad stuff.  I want a ME amid it all. I want to be a good size chunk of that pie.   

Hope I live long enough to see the results... .  .  Sometimes I am surprised that I don't die in my sleep like someone mentioned- heart attack from a broken heart syndrome. 

But now it is time to get out my pen to sign a check and put my classes in the mail. 

Boy!  What a mixed post... .  this is. 

[vivekananda]

Dear all, I couldn't help myself once I got started. In all honesty, I learn so much from you all and feel such support.  I know you see an 'ambie' word beside me, but I don't notice it, I am just a little more confident but with the same problems as us all.  

WTSP: I am sending you positive vibes for your determination to care for yourself. If you get the chance to do Hatha Yoga - jump at it, it soothes mind and body. It has been soo good for me. I am thinking of you.

cfh: such wise words, that quote says it so well. It's interesting that in spite of there being so many parents in the world, we don't seem to easily recognise how it feels to be a parent... .  thinking of you too.

llbee814: to you I am sending light, where you are now it is dark, where I am it is daytime. Where you are it is winter, here it is summer. Soon it will be daytime for you and soon enough spring then summer. Soon you can come out of your 'cave' and embrace the world, it is a wonderful place really. Until you do, please accept light from me here.

Mamma Mia: you said such wonderful wise words. Thank you. May your God bless you a thousandfold.

LtA: You feel rejected and hurt. I know how that feels too. We won't let a fear for the future for our dd's interfere with us living our life. It is our fear, our rejection, our hurt, no one else's and we can learn to meet our own needs. We can accept what we can't change, with grace and dignity. We will continue to change ourselves to learn how to ease our pain and accept our reality.

MotR: You sound so strong. I wish you were my mum. So many of us have had abusive and traumatic childhoods. I think with the genetic component of BPD, that is almost an inevitability. When deeply sensitive people are in N/BPD families, hurt and confusion is bound to be deep. Not only are we survivors, we are learning from the circumstances we find ourselves so we can leave the world knowing we have worked to make it a better place. We are doing all we can for our children, our families and each other. We are survivors learning to thrive.

Reality: Your determination to redefine your world without your beloved son is so strong. On your 'aspergers' post I read what you had written and my heart ached for you. Will was alive and you were working so hard to understand and to support him. Please accept my love.

Sunshineplease: I suppose there is some consolation in knowing that the world will still be there for us while we take time out to nurse our wounds. The challenge perhaps is in opening our eyes: to what is there for us as we learn to heal ourselves; to meet our own unmet emotional needs; to accept responsibility for how we feel and what we need to do to take back ownership of ourselves; and to learn how to practice self compassion. At least that's how I see it. Is it the same for you?

Survive2012: You know you are not alone here. Please continue to share with us. There is so much we can learn, so much support for us here.

mary290: The first thing for us is to take care of ourselves. Please take care of yourself. Your family needs and wants you, we want you with us. If you are unwell you are not good to any of us. Please take care.

lovesjazz: yeah. For me it's not about waking up. It's more about opening my eyes and getting out of bed - now that's not so easy. No springing out of bed with a skip in my step. Sometimes I'm up and on the toilet with one eye barely open, stomping about, banging into things. I hope to change that too... .  

griz: angry, bitter and resentful. ok. But they are wasted emotions that take up space in our lives. Still, the situation you find yourself in is such a ___. Still, for your sake, shake negative stuff that does you no harm.

almost vegan: see griz. Not yet 40... .  you spring chicken   so much life and energy in 40 yrs. You know that wisdom thing that comes with advanced years? ... .  well if you get there, it also means a body that is starting to collapse in on itself. The wrinkles that appear on the outside are replicated by wrinkle equivalents on the inside. Spoken by a 60 yr old. 

Vivek : you sound a bit distant, as if you are talking from another place - and I don't mean another country, although there might be something in that. Relax girl. You have so much support here.

[cfh]

My lovely mother who was undiagnosed bipolar (so we grew up just assuming she was an alcoholic) had many sayings about herself.  She loved her kids so much but she was in such emotional pain all the time.  So now that she is gone I'm remembering some of the things she said and now I realize they all apply to me! Here are a few.

I feel like the walking wounded

Held together by bandaids

God why have you forsaken me?

Pain radiates from my heart through my whole body

God I can't bear anymore burden

Jesus, Mary and Joseph I can't take it anymore (we heard that one a lot!)

God if there is a reason for all this pain please let me know

If only I could close my eyes... .  

How could you take John away from me? (my father died young and suddenly)

I'm disappearing

I'm a good person... .  why am I being tortured?

Just wring them down makes me feel so awful about what she went through.  Maybe I shouldn't have written them down because now I feel very sad.

But there is one thing that never fails to lighten my mood.  It's listening to the soundtrack of "South Pacific".

[eac]

Doing the work of grief while simultaneously doing the work of healing our family dynamic is a very difficult task.

Indeed, Sunshine.  This struck quite a nerve for me and I love the way you wrote it.

Me, I am broken but mending.  That is the only way for me to describe it - broken.  I can so relate to the not wanting to wake up.  When things were at their worst an acquaintance passed away from an aneurysm and I thought, 'why couldn't that be me?'.  Sigh... .  I don't feel that today so today is a victory and I try to hold on to that.

Peace to all of us.

[llbee814]

VIVEKANANDA,

     Thank you so much for the kind and thoughtful sentiments.   We are having a lovely, snowy night here in New York.  So, I am also being reminded here that there is still beauty to be found ... .  I do so love the snow.  Gentle reminder has brightened my night.    L.

[almostvegan]

No snow ( yet) in my neck of the ny woods. I love snowy nights too.so peaceful and beautiful. I've lasts loved that. I uses to spend hours just looking out the window watching the city get blanketed.

Such a calming experience right?

Enjoy your snow!

AV