Monday, January 08, 2007

Support, Understanding and Accepting

Roots: Even though the ground was washed from under our feet with Steven's diagnosis - we will make new roots, create a 'new normal', even though it might look strange to those on the outside......

I try to follow what other mothers do for/with their kids who have cml. Mostly with those I read about, the 'kids' are younger and are still living at home. This is why the connection with Debbie and I is so wonderful - her daughter Laura and Steven both live elsewhere and are around the same age, close anyway. This is a strange place to be - I cannot quite consider myself as Steven's caregiver and yet I keep tabs on all the results, readings, appointments, go to them with him and generally am the one that watches out for him regarding the cml. Does this make me his caregiver? Does it even matter? "Caregiver" is just a word for someone that is a support of someone that needs it.

I am not sure what I am trying to say, except that at times I get the impression that friends and family definately don't understand my position. I am not angry in any way at all about this - they cannot possibly understand my feelings, fears, relief and joys around cml. I hope they never do because this would mean that they have someone even closer to them fighting a serious disease. But it is difficult to hear things said that are so far from the reality of dealing directly with this cancer.

Steven does look wonderful now and I sincerely hope it stays that way. People see this and wonder why I still worry. I worry because my boy has cancer. Simple as that. It never goes away - it never will. The cancer and the worry. I read the boards and the stories of others with various forms and stages of cancer because it keeps me centered and informed - not to keep my worry alive. I am surrounded by people dying - we all are; it's just clearer to me and I have learned that to run away from this creates an incredible loss of information love and support.

I read about people with cml who have families that just cannot face this disease and therefore don't offer any comfort or support and its heartbreaking. Maybe that's their way of dealing with it, but that leaves the person with cml very lonely. It must be a terrible place to be if your spouse, partner, parents simply won't discuss your illness and you are left to deal with it 'alone'.

Now, I don't want to take away from those with cml or make as if I am going through anything close to what those with cml are going through at all. But. As a 'caregiver' I find it a really lonely place at times when no one around me understands - even though I know that they cannot possibly understand. It's a lonely place when some think that you are over reacting when worry creeps in again, when they think that I talk too much to, or about, those with cancer. It's a lonely place when trying to share the worries, the tests or the results and I see the listeners eyes glaze over and their mind thinking of other things. It a lonely place at times.

This lonely place recedes tremendously when I read other caregivers stories, when I hear how others are dealing with cml, when I feel as if I am not alone. My wobbly moments become less when I read and talk to others that are fighting much harder battles against cancer, when I read about others that Gleevec is not working for, when I read how much harder others are having to battle this disease. My wobbly moments go back into their rightful place and I calm down again.

It's these people on the support boards, that share their stories, that open their lives and give of their time and hearts, try to understand and who are always willing and ready to send a hug - no matter how 'unreasonable' the worry is.... It's these people that I owe my sanity to. They truely understand. They can. Unfortunately for them - fortunately for me.

I try hard not to feel guilty about how much time and space in my mind and heart cancer now fills, I try hard to accept that I am what I am and no one can understand exactly where I am in my personal battle for Steven and against cml - and my sanity in all this. I try hard not to feel upset when someone does not understand that people I have never met, and a few that I have met very briefly, can give me 10 fold, and more, the support they can. I do try hard.

As long as I live, I will worry about Steven and cml to the degree that my heart, head, stomach and the results, of course, dictate. As long as I live I will try to keep updated with the progress of this cancer by talking to people who have cancer, who are caregivers - I will surround myself with them if need be. As long as I live I will surround myself with people that really do and can understand - whether that is in person or on the internet. As long as I live.

Right now I am in a really good space and I realize that this is only because Steven is doing so well. I read the boards regularly, all of them! I stay in contact with many who have cancer, have lost someone to cancer or caregivers of those with cancer. These are the people that are keeping me sane and straight because they know more about me at times than I do!

It's largly due to these people that I have really regained my interest in photography, that I enjoy doing other things now, that cancer does not fill my every waking thought and that I feel that I am getting close to 'sane' again. Not sure that I ever want to be totally sane - that would be a lonely place in a crazy world - LOL :-)

A really big thank you to all of you out there. A really big thank you.
Love and Light

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