Sunday, May 3, 2009

Letter to my NF yahoo list

After I read a letter from an NF survivor on the list on her 6th anniversary, I wrote a response.

So timely for me that you brought this up. I am really struggling today with my anniversary, also. May 2nd is the day I had to return to the hospital in agonizing pain after the hernia surgery, which had been 4 days beforehand. The three days from May 2nd to May 5th
are a blur, when I went into a coma after debridement surgery. Coma, of course, is a blur of odd dreams; some quite beautiful, though. I remember one in particular about sparkly glass shards floating around my head. Also I remember about the coma- I heard constant voices and noise. No quiet at all in that deep coma sleep.

My NF date was two years ago, May, 2007.

I am getting slammed with so many flashbacks these days, today in particular. It is kind of a reverie in a weird way, that *I* went through that, and I don't want to forget whatever details I do actually remember. People don't really want to hear it again, but it goes around and around in my mind. I find myself purposely giving time to dwell on it, like it provides me with a reality check that I am a survivor, and that all happened to me. I know my enormous skin graft is reminder, of course, but the things that happened around all the NF; the unimaginable but tangibly real state of being it puts you into, it is so intense. Our lives are altered forever, and the memories are ours, and they were real, and it was shocking and horrendous. It's hard for me sometimes to move away from it. I don't think I've yet succeeded, or even if that is a goal of mine.

Two years, and still in physical pain. Still hoping for the doctors answers to help me return to a more normal existence. A few weeks ago I had all my tests and records transferred; delivered by hand by a caring friend, to a new hospital, to a new set of doctors- some of the best in the country. I am waiting for their conclusions. Maybe they can help eliminate the pain in my NF leg. Or, maybe not. Gotta think realistically. Waiting for a call from them.

Two years. A lot of time. Earlier in my life I had two children in way less than two years. Two whole new lives...nursed them, and held down a career. And now, my NF experiences have taken me over. Except for a miracle, there will be no more babies, and, for now, not much working. I am home with my 4 kids and collecting disability. Again, a lot happened in two years. My whole new life.

Anyone else feel very attached to their NF memories? I know they are traumatic memories, but do you feel you need to hold onto them? That you have the pictures in your head a lot? That you feel separate from everyone else because of what you went through? Is two years any different than 6 years, Heather?

I am so grateful you all are here, and we are all together with this uncharted trip. I want to hear other people's experiences of their memories, flashbacks, and their yearly markers as they go by. It is really just taking me over lately, and I don't feel I can talk about it much. I know that I can be the "normal" that people expect from me, but I often don't feel that way. It is tiring for me to be that way. I want to cry about this thing, and sometimes I don't want to talk at all. Does that make sense?

And I am depressed pretty deeply, of late. I won't do anything going on in my head, but they are not good scenarios. Cutting the graft (hey, it's all numb anyway), taking strong pills inappropriately in order to just sleep this out.

So, here you all are, survivors of NF, with all it's intricate fallout. And I can write. Yeah, writing is good. :-)

Sarah in Israel
(my story:

1 comment :

  1. Hey Sarah,

    All that you write sounds normal to me, even the dark thoughts.

    You are so brave to give voice to those thoughts, and to stare them in the face and say "I am not going down that path."

    I have to believe that it gets easier to deal with these things as time goes on. I certainly hope so. It is such a struggle.

    There is one woman in my support group who has been in my boat for 18 years. She always seems so happy and calm, even though I know that life has not been simple for her. Her attitude and experiences are very encouraging to me.