So, so sad...

Discussion in 'Parent Emeritus' started by witzend, Jun 7, 2013.

  1. witzend

    witzend Well-Known Member

    I belong to a "secret" group on FB that is for FSHD muscular dystrophy patients. Someone invited a researcher there last year, who all of a sudden came up out of the blue yesterday and said that she had heard from a geneticist treating a woman with FSHD who is pregnant with twins in my old town, and she wants to put her in touch with women who've had babies and can give her advice because she has no family to advise her. Can we please give her our contact info so she can send it to the geneticist to give to the patient?

    I sent this lady a private message and said it was obviously L, that L is not someone you should just put into contact with strangers. I asked if since this was a "secret" group she would mind inviting L to the group so that L can ask questions for herself, as this is something that is going to go wrong for her and everyone who gets in contact with L privately. I also tpld her that she is treading WAY TOO CLOSE to the HIPAA line for comfort.

    Well, she goes back and edits her request to eliminate the obvious identifying character of pregnant with twins in my old town, and writes to me and says, "I don't know who this patient is, and I don't see anything wrong with giving her people's email and contact info if they want to help. I'm not a doctor so I can't be violating HIPAA because this isn't my patient, and I'll do what I want."

    Me, being me, got peeved and protective. I sent the 3 women who answered "Yes! Send her my contact info, I want to help!" a note saying that it would be unwise to let my daughter have personal information, and that she should contact one of the public support groups as a start, she'd get good information there. Two understood, one said she didn't. I told her that it was likely that L would at some point involve her in a legal action, and at the very least would ask for financial help. This woman chose to call me an f'ing b, and printed my private message to her on the public area of the secret board. Turns out she was more than a bit loopy. It was eventually all taken down but not until it had all been there for an hour or so.

    I did contact the researcher's lab and tell them I felt it was inappropriate of her to go to a secret web page asking for private information to pass along to a patient of a colleague whom she had never met. Hey, I tried to tell her, but she didn't want to listen. Now she can listen from her boss.

    There's a big mountain lion out of the bag, though, huh? I'm so lonely. Dont' get me wrong - if I were still in OR I'd be lonely too, and frightened to leave the house, and anxious about talking to friends who "had heard this or that - is it true?" Here I'm just lonely. I have no one. I know no one. We were supposed to go out this evening, but I canceled it because when we went out last week just after I learned that L was pregnant I ended up in a breakdown in front of the few people we do know. I haven't told a living soul here about our lives, and one of the folks we were with was so happy as he had just had an encounter with his son whom he had been estranged from for the past 20 years. Thankfully I had my sunglasses on and I think that only husband knew that I was upset as I grasped his hand as though he was the only thing that could save me from certain drowning.

    I know I need to see a therapist. I honestly think that I would like to try Behavioral Modification ***se edit***. My pain is in the past for the most part. I need to let it go. But last week when I was telling someone about the pregnancy I found myself in tears over the cruelty that was my life the past 30 years. I hate that it defines me so much. I don't want to tell the story again but it's all so insane that I feel like I have to tell it so that it will make sense why I am so hurt. I feel old and I have serious health issues and I don't want to waste another moment of my life thinking about this. I feel like Lady MacBeth trying to wash out that ****ed spot, like I am truly broken. I can't even talk to husband because I'll just bawl and make him feel bad and there's nothing he can do.

    Sorry. I know that this is just a pity party and that this is the life I live and the life I've chosen to live. I honestly don't know how I could have made it any better.

    Edit - I meant "Cognitive Behavioral Therapy" rather than Behavioral Modification.
    Last edited: Jun 8, 2013
  2. ThreeShadows

    ThreeShadows Quid me anxia?

    Lord, Witz, I don't know how to express myself in a helpful way. I am outraged that you were manipulated by those in power when you had L. You must, once again, feel invaded by someone who makes you feel powerless.

    Your private group has been invaded by something which you wanted to leave behind. I would be tormented by that.

    I share your sense of loneliness. I was desperate to leave Maine, however I met some really great friends there and I'm not able to connect here. I don't "mingle" well and I'm very alone in my new state.

    I'm sorry for your pain. Life stinks without a support group.
  3. Liahona

    Liahona Guest

    I have no good advice. Just wanted you to know I'm sending supportive thoughts your way and hope the best for you.

    30 years is a long time to get over and it was just thrown in your face recently twice. That would throw anyone for a loop.
  4. trinityroyal

    trinityroyal Well-Known Member

    Witz, I'm so sorry. I too am outraged that your private group was invaded in such a way.
    I really have no words, but I am here for you.

    I think you're right that behavioural modification might help you. I hope you are able to find someone that can help ease your pain. 30 years is far too long to be tormented like this.

    Many hugs, my friend.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Witz, that was an outrage. I wish I had words that would make you feel better. I don't. But I do understand the void of extreme loneliness and I feel strong empathy and warmth toward you and wish I could just give you a comforting hug. You are really not alone. We are here.
  6. recoveringenabler

    recoveringenabler Well-Known Member Staff Member

    Witz, I am so sorry. What a painful violation. I also understand the loneliness you speak of, there is something about parenting a difficult child of any kind that brings that sense of aloneness I think you're referring to. I've worked very hard to leave the pain behind and I feel for you. I believe the way out is through the pain, feeling it eliminates it, for good, so your thoughts about healing that pain now make sense to me. You did the best you could, 30 years of suffering is enough, I hope you find your way out, you deserve to have peace now. My prayers are with you................and hugs too.............
  7. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Witz I wish we lived closer so we could actually get together more but like you, the distance is a bit far for me to go by myself just on a whim. 30 minutes I could handle no We would get together all the time but 2 hours is just a bit far with my driving problems.

    I dont understand how L found a secret group on FB. I cant find public groups on it! Im still trying to find my areas FB page and cant do
  8. HaoZi

    HaoZi CD Hall of Fame

    I wish I had something useful to say. *HUGS*
  9. scent of cedar

    scent of cedar New Member

    Witz, this is not a pity party.

    You've been gutted...and you're not supposed to rail at that? You expect yourself to go to dinner, to perform all the everyday functions of life like nothing's happened? Holocaust survivor Elie Wiesel wrote something once about not wanting to speak of what it felt like to be who he was, of what it felt like to be who he had become, through his experiences, because to put it into words would diminish the sacred horror of what had happened.

    That's us, Witz. That's all of us, here. We've surviving living loss. It's happening to us right now, in real time, every minute of the day, every minute of the night, haunting our dreams, stealing the color from our days, crashing through every barrier we put up against it.

    It IS like we are living in that movie, Apocalypse Now. We keep going down the river in our specially equipped boat, and it just keeps getting worse.

    We have to choose to survive it, or we will never make it, Witz.

    We have to figure out some way to stay upright, when all we want to do is scream ourselves hoarse, forever.

    When we decide to see someone Witz, it's not because we're suffering. It's because we refuse to suffer.

    A grief counselor might be able help with this part of your healing.

    And you are healing.

    During the worst of all this for me, I wondered whether I would ever be okay, again. Whether I would ever be curious again. Whether I would ever be able to engage in conversation without constantly referencing the devastation at the core of my life. (One time? I was talking to someone about Hurricane Andrew? And somehow, I slipped into talking about that being how it felt to lose difficult child son to drugs! It was the craziest **** thing, Witz. All I could do was apologize for the slip, and be glad for the person that she had no frame of reference for the kind of pain I was living through.)

    Whether I spoke of it or not, that devastation, those losses, were the core of me, were who I was. There are echoes of those times, sudden flashes of those old, traumatic woundings, whirling around in here to this day.

    We win by surviving the horror, Witz.



    "Heartsick and mad, Pitt shouted to the open sky." Clive Cussler


    "Sybil remembered the crucifixions of her past, and by each of them, where she herself hung and screamed and writhed, she saw the golden halo and the hands of the Fool, holding and easing her, and heard his voice, murmuring peace."

    Charles Williams
    The Greater Trumps


    You are not involved in word games.

    You are fighting for your spirit, your sanity, your soul.

    I don't know where I got that one, Witz.


    Seboulissa, mother goddess with one breast eaten away by worms of sorrow and loss
    see me, now.
    Your severed daughter, laughing our name into echo
    all the world shall remember.

    Monique Wittig
    Last edited: Jun 8, 2013
  10. Hound dog

    Hound dog Nana's are Beautiful

    Witz you've been through the ringer and back again with L. You were just trying to protect others. Unfortunately, that usually can't be done and they have to learn the hard way.

    I'm sorry that somehow she managed to invade your private space either by accident or design. (I don't understand how one finds a "private group" on fb either, I thought that was the point of making it private??)

    It is awful when we find a special place and it gets ruined. Therapy would likely be a good idea.

  11. witzend

    witzend Well-Known Member

    Thanks all. To be clear, L didn't find the group. She found a colleague of her geneticist who was already a silent part of the group and asked her to ask people for contact info to give to L. L. Knows of the group through M, but chose to not go that way for whatever reason.
  12. DDD

    DDD Well-Known Member

    For once I will keep my response brief and simple. I'm sorry and support you in your efforts to find a comfortable "new normal". Hugs. DDD
  13. Nancy

    Nancy Well-Known Member Staff Member

    I think cognitive behavioral therapy is very worth checking out. FWIW I have found that by telling my story out loud to those I feel safe with does help diminish the pain. I have finally reached a point where I have nothing more I need to get out.There was a time when my insides were bursting.
  14. witzend

    witzend Well-Known Member

    Thanks, all. Any ideas of how you find a therapist that practices (well) a particular kind of therapy? FWIW, I haven't spoken more than two words to husband since Friday. I've caught up on a lot of sleep. IOW, "seriously depressed".
  15. Nancy

    Nancy Well-Known Member Staff Member

    Witz I found the one we used for difficult child by googling CBT therapists in our city.
  16. witzend

    witzend Well-Known Member

    Thanks, Nancy. I'll try that. I'm going to have to research my insurance to see what they cover.