Thursday, March 22, 2012

Endometriosis Awareness Day 22

This comes from the site ERC I previously mentioned called Mendo. Mendo was started by John and Carey Blondin as a way to get support out to Men who are also going through this journey. John does an amazing job with his writing and support. If you have comments or suggestions feel free to send an email to mendoblondin@yahoo.com

WHAT ENDO MEANS TO ME

I feel that I should write this like, "what I did on my summer vacation" but this is much more overwhelming. Endo, ah yes, six years ago I had no clue as to what the hell it was. My wife, then my girlfriend, told me about it and gave me all the information that she had at the time. She was totally up front with me about what she knew and what had been dealt to her thus far. But she did not know the full extent of the disease and what it was going to do to our lives.

What endo means to me. Endo means loss. Loss of many of the things that I as a man had hoped for with this relationship. It means the loss of physical contact, not just sex but the physical contact between a man and a woman. It means that my wife, the sufferer of this disease, no longer feels that she can touch me in any way. Not because she does not want to but as she said, " it is hard to feel good when I hurt so bad." The more that she hurts the deeper she withdraws within to protect herself. She no longer has the ability to extend herself in any physical way due to the pain. She feels that she can no longer extend herself in any sexual way or in a way that could be remotely considered sexual because, "I do not want to start anything that I cannot finish, it is not fair to you." It means that I come home from work and do not know what I will find. Will she be lying in bed in fetal position, face wet from the tears of frustration and pain? Or do I find her sitting on the couch trying to show a cheerful facade of what she used to be? It also means that I will come home and she will be dressed, dinner will be made and she will have made a great effort to clean the house but for this exertion she virtually collapses in my arms when I hug her because she is so worn out from the effort, bursting out in tears because she cannot face the fact that she cannot do the things that she always used to and she knows that I am tired but will do them for her. Endo means that I have to learn that I cannot do anything to make the pain go away. It means that I have to sit and hold her, stroke her hair and try my best to make her feel better knowing that I am doing virtually nothing that makes a difference for the way that she feels but probably makes her feel more secure inside. It means that I have to learn to keep to myself the anger, the frustration and the tears because I feel that she has enough to deal with and does not need this added to it. I have to be the strength that she can lean on even though I am dying on the inside. Endo means that I have to be second in this because I am healthy and I am not in pain. It means that I have to take over and do the things that need be done so that she will not feel that she has to and will try to do them. It means that I have to disregard the little outbreaks of anger that escapes the pain clenched lips knowing that it's not really directed at me but at the things I am doing that she used to do and cannot now find the energy to do. Endo also means that we cannot plan anything as a family, outings, walks or anything. It also means that "spur of the moment things" are a rare and wonderful thing. Endo means that we are having problems having children. Problems because she cannot conceive and problems because we cannot even make love most of the time. It means that the possibility hangs over us like an ominous dark cloud that we may never have any. Endometriosis means that our lives as we had planned and wished for are just that now, wishes. They seem to be long lost wishes or pipe dreams, seemingly possible but somehow out of our reach. Endo, for her, means frustration at the inability to do the simplest things and for me the frustration of trying to balance helping her do them without making her feel that she is an invalid and unable to deal with her own life. In the end Endo means death. It is the death of what we were and of what we could have become. It means the death of the woman that once was and the man that I could have been with her. It means that what we were to become with each other is now an unknown and what we will become is in the control of this disease called Endometriosis.

We have not died in the sense of no longer living nor does it mean the death of us as a couple. It only means the death of the things that we wanted and are no longer able to achieve. It means that as a couple we have become much stronger because of this fight and we have learned that each and every thing in our lives means more. Every little win is a great battle. Endo means to me that now we have to adjust the dreams and wishes we had for our lives. It means finding doctors that can and will treat this disease and allow us the time and the ability to come up with new dreams with the hopes that we will be able to fulfill them. It means that maybe we will still be able to do the things that we once wanted but we will just be starting a little later than we had originally planned. It also means having to understand that the feelings of envy are normal and that others are not to blame for the things that we cannot have. It means that we have to accept what we are and nothing we did caused these things to happen to us. We have to accept ourselves as a whole person and that if the dreams that we have do not come to pass that does not make us only half a person. We will make new dreams and modify the old ones to fit the




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