My book.

My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Saturday, March 16, 2013

WHO CARES? (The sarcastic vs the potential.)

"My (family, friends, colleagues) do not support me.  They say mean things.  They do not 'get" it." I read this over and over again in the online support groups.

I know the pain of having people turn away.  And the pain of thinking if I change something in me, if I do something...different, it will make a difference.

Recently I have been thinking about the people who are (were) supposed to be my family.

My father never believed in my pain, in the birth defect that caused it, or the diagnosis that was repeatedly proven.  Even when he was dying of ALS.  When I thought the end to our lives is when things can turn around. 

I sat next to him on the couch, my medical records in my lap.  I knew I would have to show him, for the umpteenth time the proof he had already seen, and been told, by me and by my doctors.

"I need you to acknowledge my pain and my disability.  And that it is a medical problem."  He had tried many times to convince me, and others, that my problem was psychiatric.   (My parents are first cousins.  I think a big part of his refusal to accept it was that he blamed himself.  I could be totally off on it.  There are other potential Freudian reasons.)   When my neuroophthalmologist showed him textbooks that described and showed pictures of why I had the pain his reply was swift.  "Don't you think she just needs a good psychotherapist?"

This conversation was no different then any other.  "I do not believe you are disabled or have this pain."  What was the point of trying?  Even when dying he would not, could not accept the truth.

My siblings never came to the hospital, sent a card, or flowers.  (That is not quite true.  SisterA came once, days after one of my brain surgeries.  We had not spoken in years but her major question  was "I love you, do you love me?"  I answered before giving thought to the question.  It was the only answer I had.  "I don't know.  I don't know you."  She was horrified by my answer, or angry.  She left.  That was the last I heard from her for a long time.)

I have written of the answer I got from my brother in law when I stupidly sent an email asking what I had done to sisterA that she was never there for me.  He replied: how you treated her and your parents.  But I treated her well.  Out of the blue she called me and asked that I go see her paternal grandmother (my siblings are half so this woman was not a relative to me.), who lived in NYC, as did I, a woman whom she had not known since she was a young child, if then.  I agreed, going to show her pictures  of my sister's children, this woman's grandchildren.  She was hoping there would be a response but there was none.   She never called me again after I told her what the woman had said, "It has been way too many years.  There is no reason for me to know them."

I saw all of my siblings at my mother's funeral, and my father's, but they essentially ignored me.  even when we had to get together for dealing with the will, when there was terrible behavior directed at me, not pertinent to this post.  (I had one more surgery after that, this time for my neck.  It was in such bad shape from a previous surgery that I was told "You can be paralyzed just walking down the street."  This was right after my mother died.  I told them about the surgery and how bad it was going to be.  No one cared. 

SisterB came to see me at my home after I had the operation.  I was wearing one of those large neck braces, was on a walker, terribly thin "fragile" as a nurse called it, and could either talk or breathe but not both.  She asked me "Did you almost die?"  I had been in a coma but do not know if I did.  "I don't know."  She stayed for a few more minutes, left and never cared enough to visit or call to see if I was doing better.)

After that  I heard from none until my brother sent me an email telling me that sisterA was very ill with cancer, and dying.  He also made sure I knew that he had taken her into his home for a period of time while she was undergoing radiation therapy, apparently an effort to reinforce how much they had not done for me.  It worked.  It  hurt.  A lot.   I left a card and gift for her at her house but it was never acknowledged, yet at her funeral a friend of hers told me how much sisterA had appreciated the gift and gesture.  Very strange, not a word to me but to someone I barely knew?)

I will not go into all the examples of their behavior, ways they treated me that were outright mean and nasty, or just lacking in any compassion, empathy or care.  (It is slightly cathartic writing it but I do it mostly to give a picture to the point of my posts.  It is interesting I feel I need to defend telling my stories, even here on my blog.)

Which brings me back to the word indifference and why it is important in how we react and respond to the ones who treat us so poorly.

After my book was published I sent an email to all 3 of them.  Since none had contacted me for many years I did not think they would care much about the fact that I had written a book.  I did want to give them an opportunity to read it and see if they felt I had lied about them, maybe libeled them.  If they did I wanted to deal with it now rather then later.  They never responded, never requested a copy.  My book publisher has a page on their site that allows you to see where orders are coming from.  None indicated books were purchased by any of the three. 

The opposite of love is not hate.  It is indifference,

My siblings are completely and totally indifferent to me.  When I think about wanting a family, about having a family, in fact seeing on facebook that I have great nieces/nephews that I have never met and probably have no idea I even exist I am hurt, to my quick, to be honest.  But then I think do I want to try and know these people?  The part of me that is dying for family, for connection, says "Yes." but the logical, sensible part of me says "No".  I do not want to be slapped down again as when I have tried in the past.  And they are indifferent to me.  I am no more to them then a gnat on a doorscreen, if that.

So what do I do?  What do we do when we have this gigantic need for family, friends, colleagues, to know our suffering, our pain, the emotional and spiritual as well as the physical?

I think we need to look at each of these people with whom we want the relationship, or who have hurt us, going out of their way sometimes, and look at the interactions we have had.

Sometimes the nastiness, anger, denial, disbelief is from someone that we know has feeling for us.   With them it may well be worth the effort of trying to get them to understand.   Other times, when looked at in the clear light of day, they have no sentiment for us. 

If it is the latter we need to let those people go. 

Because they let us go a long time ago.

What do you think?


  1. What do you do about unsympathetic family? I wish I had the answer. I have a similar problem. I have occipital neuralgia. I am trying to keep the family in my life but at a distance.

  2. If you can keep them in your life, even from afar, it is probably worth the effort. It is always a balance, are they more toxic or beneficial?

  3. I think when peoples don't agree with your opinion so they gives you good chance to do expertness in your thoughts and work,Sometimes respects creates problem in the way of freedom.So do your best what you think is write.Then you see all things are getting write way.

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  4. When they look at you, who do they see? It seems to me that all parties here consider themselves the "victim". I find that most people spend their lives reacting to perceived slights and the mismanagement by others of their "feelings". Too bad, so sad. We can't live our lives waiting for other people to acknowledge our pain and suffering. Who wants to be "pitiful" anyway?

  5. Hi T.
    Thanks for commenting.

  6. I've just come across your blog and appreciate how honest you are in everything you say. I have never had this problem, my family and friends have always been supportive, to the point that I cannot fathom why anyone would ever leave someone out in the cold. I wish I could say I understood your pain, but that will be a lie. Instead I will simply say 'I hear your pain, I accept your pain, but I will never hold it against you'.

  7. Hi Tamara, Thank you for taking the comment. I am glad that your family and friends are there for you. It is so very important.