John Blondin
North Carolina, USA
BEER
(Read this all the way through)
Beer is great. Beer is one of the best things in life. There is not much that
I do not like about it. I like
the taste and the texture, the way that if feels and the look of it. I also
love the way that it smells.
Beer has a way of making you feel real good and it does make you feel real
close, all warm inside.
Another great thing about beer is the way that the feelings of it linger for
a while. It is a very good
thing that we really like. Now I know that not every one likes beer the same
as me or that every one
wants that same amount of beer that I do. Each and every person is different
when it comes to this. I
have also heard that women do not like beer as much as men do, as a rule but
I am not totally
convinced about this. I think that it is not the beer or that they do not
like it but more how often that
they want some of it. I have learned to enjoy the finer points of beer the
last few years and have
found that quanity is nice but quality is better. I have also noted that the
amount of beer that I desire
is not what it use to be. I do not like it less just do not need as much to
be happy. I also look
forward to the time that I encounter beer. There is nothing bad to be said
about having a good beer
with the one that you love.
As life goes on things happen and as it is now I have not been able to have
any beer for a while. Oh
it is not mine or the fault of anyone else. It is just one of those things
that we have no control over. I
have thought from time to time that it maybe my fault but I have come to
understand that I have done
nothing wrong and there is nothing being done to me. It is just the way it
is. I do miss the beer,
sometimes more than others. I know that my partner misses the beer also.
Sometimes I know that
she feels that my having to miss the beer is her fault but I know that it is
not. and I know that she
misses having beer as much as me.
Now, I am not addicted to or obsessed with beer, it is just something that I
really liked. I really
thought that I was obsessed for a while. I think that maybe I did suffer from
withdrawal but I know
now that was in my head. It's just one of those things that when you cannot
have what you want, you
want it all the more plus I was used to having beer just about whenever I
wanted it. Part of the
problem is that I no longer have any control when I will have beer and I do
not know from time to
time when I will have any. I have had to learn to accept the fact of this
loss of control. For a man, this
is a hard thing to do. There are times that I just want to reach out and have
some beer, I mean it is
there close at hand. Sometimes the urge to have some beer is very strong. I
have nothing physically
wrong with me to stop me from having beer, but the situation does not lend
itself to this. So I am
learning to do without beer so often. I am also learning to not be as
bothered by the loss as I was in
the beginning. I have to admit though, sometimes this is very, very difficult.
I know that sometimes I wish that there was someone that was responsible for
taking beer away
from me. Think about it, if I could yell at someone or hold someone
responsible for this then I could
vent some of the frustration I feel about this. I could argue and deal with
this "person". But
unfortunately there is no one that I can find to take this out on. I know
that my partner is not at fault
and that she is as upset about this as I am, she cannot have beer whenever
she wants either and I
know that she likes beer. It is very frustrating that your partner wants beer
and cannot have it. She
has no one to yell at either just like I do not. Remember that beer is one of
lives simple pleasures and
one that is not missed until it is gone. When beer is gone or the use of it
is few and far between
remember you will live without it. There are things to help the feelings
pass. You should do your very
best to enjoy all the other things in life, and try hard not to think about
the things that you cannot
have. Besides, who said that you will never have beer again ? Hey, man does
not live by beer alone.
Now you know that I am really not talking about "beer", but something we all
like even better. (If
you haven't figured it out yet, take out the word "beer" and insert the word
"sex").
TO WHOMEVER IS IN
CHARGE
Dear Sir/Madame:
I know that you are very busy and that any problems that I may have are not that
important, but I do have a few things to say. Let’s just say that this is to your complaint
department.
For some unknown reason you have decided to give my lovely wife, who is my dearest
friend, a thing called Endometriosis and you have decided that this thing will be
extremely painful for her. Not just painful on some days and not so bad as others but on
each and everyday. You have allowed us some time in the beginning to enjoy life and each
other but for the last few years you have made this thing bad, very bad. Now I know that
there may be a reason for your actions and I am not supposed to question them, but I am
and I will.
You are messing with the one thing on this earth that means more than anything to me.
You are giving her a problem that I do not feel that she deserves and I know for a fact that
we do not want. We have done nothing to warrant this type of problem. It is bad enough
that we are unable to conceive but now you have made it so bad that we cannot even
try.
Everything in our lives revolves around this endo and because of it we cannot make plans
for anything. We cannot even have any intimacy for fear it may lead to something that we
cannot do, not to mention that the bike tires have dry rotted from lack of use and our dog
does not remember the last time we all went for a walk.
Now you probably can tell that I am pissed about this and I want something done. I have
a proposal. Let me have the pain. Give her a break for a while. Maybe just do it on a
once a week deal or even better once a month... no wait, I have it... once in a lifetime and
then be done with it.
Now being that we have already done this for this long, I think that we should be passed
with time served. Whatever lesson that we are supposed to learn from this, I think that we
have it. I think that we cannot only pass the test at the end, but probably know enough
now to teach the class.
The part of this that really gets me cranked is that you allowed us the time, after surgery
this time, to think that things were getting better and that we would get our lives back.
You allowed her to start to feel better and to “get happy” with the feelings. Thinking that
we finally were going to pass this test and get on with John and Carey’s lives. But no.....
this was not to be.... well, Sir/Madame, I want to know just why in the hell you would do
this to people? Whatever reason is not good enough! We have paid and now we demand
that things be changed for the better. I am tired as hell of feeling like a third thumb here
unable to do anything to make things better for her. I am tired as hell of watching her
suffer and unable to do anything and I am tired as hell at her feeling that this is her fault
and that she is screwing up our lives because she cannot do anything about this any more
than I can.
If this is to go on then why can’t I take some of the problem and give her a break? I really
would like to see that lovely smile and that happy go lucky attitude that she used to have
and the one that I still see from time to time. She tries so hard to make light of this so as
not to drag me down, but I can tell. I know her and am tuned in to her enough that she
can only hide it for a short time before I know.
So in conclusion: I demand that this be changed and that it be done now. I also demand
that you reconsider just why we have had to endure this for so long and to hurt so much.
I do not want to have to watch her suffer with this any longer. She deserves to be happy
and healthy, she deserves a life, and so do I with her.
Thanks for your time, and I await your answer.
John of John and Carey
ATTITUDES
Men have a way of thinking about things that is very different than women. Even when we have been with someone
for a long time, the way that we look at things are different. We do not always see eye to eye. This is not because
we do not want to but more along the lines that we just think differently. This is a known fact, I am not putting
forth something that is new and completely out in left field. This is part of the spice of life. Sometimes it is
the things that fights are made of. This thing called Endo has many of us men baffled as to how to deal with it.
We do not feel the pain, you do not look like you're in pain. There are no outward signs that you're in pain, no
cuts, scraps, broken bones, no bleeding, so what gives? You look as beautiful and as sexy as you always did and
I feel all the ways that I always have about you, so what gives, I do not understand?
You also have to remember that as men we're taught from early boyhood that pain is something that you shrug
off, get up and keep playing. You "do not cry like a baby", you deal with it and go on. I know this for
a fact. I also know that I learned the lesson so well that even when I am hurting badly I cannot bring myself to
stop, cry and go on. I have a problem even telling Carey that I am hurting about something. Something went wrong
after the vasectomy reversal operation. Two days after the surgery something tore and I started bleeding inside
my right sack. The pain was so bad that I could not walk but I did not tell Carey until she saw that I was acting
strange and questioned me. We are this way not because we want to be but this is the way that our fathers raised
us and their fathers raised them.
First lets look at pain. We know that this disease causes pain for those that suffer it and we know that the
pain varies in degree from person to person. We have been told by the doctors that not every person that has it
feels it the same way because it depends on where the implants are, how extensive and how many adhesions there
are. Ok, these things we know but what we don't know is just how WE are supposed to deal with it, the pain that
is, and what we're to do to help the ones that we love that have it.
Well I can only tell you what I have learned to do about it. First and hardest is to learn that I am no longer
in charge. (I know, the women just let us think that we're in charge.) I have had to learn that no matter what
I want to do I have to bow to this disease. This runs from A to Z. Now, do not get me wrong, the woman that suffers
also has to take a back seat to the pain. It is totally controlling. Regardless if I want us to ride bikes down
the road, take the dog out, make love, whatever I want I am not the one that makes the call. Endometriosis makes
the call and tells me and Carey what we have to wait for or what is out of the question. And when I get upset about
it I have to be angry at ENDO and not at Carey. It is not her fault that she has this and it is not her fault that
she cannot do the things that I want. I have found that in most cases they, our women, want to be able to do things
as well. Maybe more than us. If they could then they would not be suffering with the pain that they have.
This has been the hardest thing for me to deal with. I was raised that even though I talked over with my wife
the things that I want to do I still like to get my own way. I am not a hard ass and I do not mind not getting
my own way but I do like getting it once in a while. I like to think that the things that I want to do are the
things that she wants also. But, well this is the bottom line guys, I do not ask much anymore because I know the
answer. Not only do I know the answer but I also know that asking causes mental pain for her because it is a reminder
to Carey what she also cannot do.
Sometimes I do ask hoping that the answer will be yeah, and sometimes I ask just because I want her to know
what I am thinking but I try to keep most of it to myself.
The next hardest part is the fact that I was raised to protect my loved ones. "God help the man that touches
my woman!" Well if a man made her hurt the way that she does then I could deal with it. If something is making
her uncomfortable then I will "fix" it. But this I cannot fix nor can I make it better.
Herein is where the frustration lies. I love my wife dearly and feel that it is part of who and what I am to
make her feel better, to fix the problem whatever it may be. When she feels good I feel good. When she is happy
then I am happy and the same goes the other way. She is hurting and there is nothing I can do to stop it; now I
am hurting. I can cut the grass, trim the trees or fix the car. I can do anything that needs be done but I cannot
make the endo go away. Endo runs our lives, WE do not and this affects us both. Me because I am not the person
that I am supposed to be and doing the things that I am supposed to be doing ( says me) and her because she feels
that she is at fault for messing up all the plans we have and the things that we want to do.
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 present
situation.
ANTICIPATION
This one will kill you. Not literally but it will really mess with your head. Anticipation, like
thinking that when I get home she will be feeling good and we can go and do this or that
or the other things. Like calling home at lunch time and finding a cheerful voice there
telling you that she feels fairly good for a change and then anticipating what will go on
when you get home. Or like one that happened to us, anticipating that we were going to
the hospital for surgery and at the last minute the whole thing was canceled.
With endo I have found that the less that I anticipate the less that I get
disappointed. The less that I plan the less that my feelings are hurt. And I will tell you right
now that endo hurts my feelings a lot. It seems that the more things that I try to do to
make our lives normal the more that the endo jumps up and hits me right in the ...well you
know. It is really difficult not planning things, not looking ahead. Someone like me that
needs to know what I am going to be doing tomorrow and someone like me that likes to
be able to do things. I am not good at just sitting around doing nothing. Carey used to
take my watch away from me when we went on vacation and not return it until we got
back into the county. This way I would not worry about the "time". Now I have to live my
life this way and I find it very difficult and maddening at times. There is a certain amount
of spontaneity in most everyone and I for one enjoy it in some areas of life. But trying to
live on it is another thing altogether. I want to be able to plan a trip to the mall or to the
beach. We have talked about going on an ocean cruise to the Bahamas for a long time
now but cannot bring ourselves to buy the tickets. Can you imagine all that planning, all
that saving and then not being able to get on the boat or getting on the boat and having a
wonderful time until the endo kicks up and then being stuck there for hours without a way
to get home or a place to hide. Besides the feelings of guilt that the trip was ruined and the
feelings that I should have not planned this in the first place. Lack of knowing what will be
going on the next hour let alone the next day can drive you crazy.
The other bad part of this is the knowing that you have to keep to yourself the
thoughts that you may have about just about anything that you are feeling or even worse is
the one when your mind just sort of goes off on its own because of some outside
stimulation. Sometimes this is real difficult and causes feelings of anger and major
frustration. I can no more say that I want to do this or that or suggest that we do this or
that because I do not want to make her feel bad and I do not want to be told no. So
sometimes it just eats at you for a while and then you try to let it go and go on with your
life, or the thing that you are now calling a life.
Words and phrases are another area that can cause problems. You see as we grow
as a couple there are things that we do or did and words or phases that meant or referred
to those actions. Now that this disease has become a 24/7 companion to us these things do
not mean the same any more. All they do is cause memories to resurface, memories that
right now we do not want to see because we can not relive them now. I know that this is
different for the female part of the equation than for the male part. I know that because of
this nature of the disease that whole outlook of the way things are is viewed differently by
the partners. I hate to belittle a point that I have made before but I really do feel that the
fact that we men do not feel the pain and discomfort that this disease causes we have a
different point of view. Not wrong nor ill-advised but just from a different angle. Some
times I really get upset about the facts of Endometriosis. It treats us as a couple so
differently and in ways that effects us both. Even though the same things are missed and
the same routines are changed, possibly forever, the way of looking at it is different. There
are times that I just wish that I could have someone to vent to. Someone that would fully
understand what the things I am saying really mean because they have been there. I, like
most, love my wife too much to dump on her. She has enough problems to deal with as it
is now and besides as much as she loves me and I her and as much as she tries to
understand what I am saying or feeling, she will not be able to fully appreciate my feelings
about this anymore that I can fully understand her. I think that I do and then I realize that
there is a lot about this that I have not got a clue. I think that this is due to the nature of us
men and women and the many ways that we see the same things differently.
Finally my biggest fear about this whole situation is that these things that we do
not do and the things that we can no longer do now will be come the "normal" and the
things that we wanted to do or the things that we did will become the wistful memories.
ENDOMETRIOSIS RESEARCH CENTER
Please visit the ERC's website. It has tons of endometriosis info, the latest research information available, as well as the links to support groups in your area, and the link for the ERC's online support group.