Wednesday, November 19, 2008

It's Not About the Hair: LONG post today

Kendyl placed "It's Not About the Hair", by Debra Jarvis, into my hands at the Art Bra Auction. I haven't yet had the wherewithal to open it up yet. Even though, I know, I know, the message is positive. It is for the same reasons I haven't yet watched "The Last Lecture". "Jenna, have you seen the last lecture? You really should! It is SO inspiring!" or "Jenna, the Last Lecture, you have to watch it!" I know everyone is only trying to hand me hope on a platter, but I just can't walk down that road yet. Their pathways are NOT my own, and I really need all I have for my journey. I will, one day. Those books will become like best friends who understand what I just went through like no one else. But for now.....focus.

To keep me from tittering off the high wire I now traverse, I have to focus on MY experience with the uttermost attention to every wobble and balance check. I am not an old pro at this, and reading a book while walking on a wire doesn't seem the safest plan.

I have jumped onto breast cancer boards to find an answer to something, only to jump off screaming and with a good case of fear induced insomnia. The people who hang on boards are having hard times, reaching out for answers, and represent a fraction of the breast cancer population. Most are freaked out because they fell off their wire and are hanging on by one finger and asking to be pulled back on. The old timers, ones who have make it across, reach out and get them back on, if they can.

To keep my calm on, I jump back off the boards quickly. There are words of warnings on the boards from "old time Stage IV'ers" to steer clear of boards whenever possible. One of the best pieces of advice I have read from a board was from someone who popped on to answer a question from a frantic person, who was asking what was going to happen to them, what would the pain be, what horrors awaited her? The response, "Have cancer only on chemo days, go live life the others." I haven't read a board since. I may, if one day, I am hanging by a finger on the wire. But until then, they don't feel right for me. I just take on fear.

I hear some of you. "But Jenna you can't live in denial." This isn't really denial. Nooooooooo. I don't consider it denial. I even asked my therapist, she said, "Nope, no denial here." I have been given the "reality check" stamp of approval.

Believe me, after the one clinic "telling me like it will be", I am in NO illusion of the painful, horrible, no good death I will one day experience. Forget about all that. I am alive now! I will experience my own painful, horrible, no good death at some point in the future, why the HECK would I pull that experience into my Now and live my painful-horrible-no-good-death in a long drawn out mental trip a thousand times before I actual have to experience it. I let little thoughts race through, "Oh dear god, I remember the pain my dad was in....", or "what does slowly drowning in your own lungs feel like? Can I do that?!" and I let them run right back out. They have no spot at my table. Only LIFE sits with me. Death just passes through, reminding me ....."One day....better live now".

I have to draw on my OWN experience right now. My high level of empathy means I just absorb their pain and their suffering....even if they are highly positive people. I still "take it on". I always have. So I stay away from detailed journeys. I am like a emotion sponge. I need all my energy I can for myself. It is so easy to slip into the suffering of an another. To feel them wobble and then lose balance myself.

With all that said, I must be feeling close to "looking back", even though they say my journey will never be done. They say, I will always dance with cancer, always have Death walk through my dinner party and remind me my life will probably end in brain cancer and much pain (I flip him off and tell him that they WILL have a cure by then.....and that my dance card is full for the evening. And the day we almost got hit by a mack truck on the way to chemo, well, the irony didn't fail me.). But I must be feeling closer to the end of this chapter. This most emotional, "do I have 3 months, or possible 10 years" chapter.

I know I must feel steadier on the wire, because I picked up that copy of "It's Not About the Hair", stood still on my wire, and read. I see immediately why it was handed to me. This is why, she summarized something, because she has the hindsight, so perfectly:

"I learned so much about cancer from being a patient, and probably the most astounding thing to discover was only a small part of the cancer experience is about medicine. Most of it is about feelings and faith, and losing and find your identity, and discovering strength and flexibility you never knew you had. It's also about looking at life and staring death in the eye. It's about realizing the most valuable things in life are not things at all, but relationships. It's about laughing in the face of uncertainty and having courage to ask for more chocolate and less broccoli." This book is going on the must have list to the right.

And it isn't about not helping the person behind you. What I find, is that REAL people will show up and act like guardian angels. They don't tell you, "Oh, I had this horrible experience. It went something like this....does that help you out?" They guardian angels say, "Okay, take a step, steady, steady, okay now one more.....Good, good..." They don't tell you, you are only 1/3 a way across the wire, they just help you focus on the next step.

Then there are those of us, permanently on the wire. Guess I better build my balance.
Or better yet, I hear my mentor, telling me to grow some wings, and transcend this tightrope walk.

Much love,

1 comment:

Anonymous said...

"They say, I will always dance with cancer"
What the hell do "they" know anyway?! To hell with their grim death sentences!! Death was not invited to your dinner party nor mine. Kick his butt to the curb and let life feed you its feast.

Although I do read the books and hop on the forums from time to time (the crazy sexy life is my favorite)I agree with you 100% that you have to make your own way.