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Thursday, January 26, 2012


I was watching the coverage yesterday of Rep. Gifford's resignation from the House. People were standing, members from both sides of the aisle were teary eyed, hugs abounded.

What happened to her was horrendous, (as what happened to the other 13 people injured who have not been named and in the news (much less the people who were killed). It has been obvious that she is a very well loved person, within her immediate life as well as professional.

I felt guilty as I watched. Guilty because a part of me was angry and jealous at the love being sent her way. At the amount of help and support she had, and has, to help her in her recovery.

When I was at the neurosurgeon's, to talk about the problem with my implant, the possibility of another surgery was broached: have it removed or have it replaced.

The surgery for putting in the current implant torture. I was given a general anaesthesia and then awakened, repeatedly, as Dr. Barolat triggered the horrendous, excruciating trigeminal neuralgia pain. When the pain was the worst it meant he was in the right place. Could I even agree to such a thing again? I did not know - but surprisingly, even to me, that was not my first thought.

My first thought was - Could I go through this again, completely by myself? Watching the Giffords piece my thoughts went to the same place.

How is it some people have so much support, so many people pulling for them? I had to relearn to walk by myself, no one to cheer me on. I went down to the OR 9 times without anyone to see me off, or even for me to talk to, other then non-involved professionals. (I asked a nurse before one surgery "I know you won't mean it but could you just say the words, "I am sure you will be okay." I repeated my promise, "It's just words, it doesn't mean anything. I know you won't mean them. I just need to hear it." She refused.)

The implant is not working. Each time I change the parameters (of how it works) I feel the tingling of stimulation but then it quickly stops. One time it seemed to help but that lasted only a few hours. It has not happened since.

Yesterday morning, frustrated by the lack of progress, fearful of my options, I turned up the amount of stimulation. And then turned to the TV. The picture of Rep. Giffords and a whole congress, even those against her before the shooting, applauding, crying, and encouraging her filled the screen. How wonderful for her, said my head. How come it is there for her and so many others. but never for me, asked my heart.

To all who are alone with their pain, this blog allows me to tell you you are not alone, even if we do not know each other in person.

To all of you who have family, friends, colleagues who support and help you, be grateful and embrace those who 'get it'. You are very, very blessed.


  1. The sad part of it all when you have all the money in the world and are in the government, we the people are paying for that treatment and that treatment has no options. Her family is one that stretches out through all the government. Tho the act was one done by someone that was walking mainly down the street her care was given by the best. We AREN"T given that choice, if so maybe just maybe we wouldn't be where we are today. Maybe my daughter's brain injury wouldn't of been as extensive. We all would have great care. We wouldn't have to worry about our social security running out. I am thankful Rep. Giffords has made the comeback she has but come on people if you vote for these things why don't you have to live by the things you are voting for. Because you wouldn't if your life depended on it that's why.

    1. I understand what you have written and I hope your daughter is doing better.

  2. ****To all who are alone with their pain, this blog allows me to tell you you are not alone, even if we do not know each other in person. *****

    After reading this part i had tears in my eyes.every day i live with pain and no one around me understands how much pain i live with.Everyday i feel alone and suffer and want to give up..

    1. I understand how you are feeling. It is very hard because so many do not understand, especially because pain is invisible.
      You are definitely not alone. I hope you will consider coming and visiting our Women In Pain Awareness group on facebook.!/groups/111961795481256/

  3. It does not seem to be something shameful to think that Representative Gifford had an advantage most people do not. There does not seem to be any way to make that different for medical care. For instance, the difference between what's available in Boston, MA and what's available here, only 2 hours away, is very large; and of course, what she could afford and what most people could afford are different. But you should perhaps not think the public demonstrations are so meaningful. I remember a year when I played a solitaire game for hours, just to hear the "good going!" that would come when I cleared a layout. Responses here are, I think, a stronger kind of applause.

  4. I actually was taken to task by a reader who posted her reply elsewhere. She felt I should edit the post and that it was 'wrong' for me to think it/write it. (I did get the impression maybe she had only read the title.)
    It is a sad commentary that money is an issue for the kind of care we can get, and did not only money but her 'power" allow her to get it faster then others? For instance was she taken first? (Questions I had not really thght of previously)
    I live an hour away from a major city with big nake hosps. My mother told me when I moved her "Yo don't want to do that because blank hospital is the local hospital, the care is terrible." She was right.
    Money and geography can equal really good, mediocre or bad care. Unfortunately.
    And I hear you about the Good going from the computer. I have done that myself.

  5. Even those of us who appear to have the love and support of others often don't. Our families and friends cannot imagine the pain we go through in 8 hours much less non-stop. I am not sure I would want them to either. My daughter recently had a terrible infection and two surgeries to clean out the infection and save her life. She realized the pain she was having at a 7 or an 8 was still lower than my baseline of an 8 everyday while I function. It crushed my heart when she realized it. Too often, those of us with supporters have to support them, "no, I'm fine really. I'm okay. Don't worry about me". There is really nothing else to say. There are days I want to scream at my husband so badly when he says that the reason I can't get things done like I used to isn't because of my illness but because I am disorganized! He is in such denial he chooses to forget the spinal cord stimulator and morphine pump and pain meds I cannot get out of bed without and now, some days even with those, I cannot. I am not saying to go it alone is better. It is not. It is much much worse but to go through it with people you have to support and make them feel better that you are sick is pretty hard too.

  6. Absolutely. I am sorry your little girl went through that but that she had the understanding of the difference in pain is way beyond her years.
    I wish your husband could be more open to you.
    I know when sometimes people comment that 'you must be in pain, I can tell by your eye" (which is deceiving as to my pain level) I rarely acknowledge the pain, and often it is because it feels important, for some reason, to reassure them.