I couldn't bare to tell her how desperately my heart is trying to compensate for the inadequacies of my lungs. Nor could I share my fears that my heart cannot compensate for much longer.
I wondered how my more robust physique is enough to override all the other signs of my growing debilitation: being on oxygen, needing a wheelchair, having my husband prepare all of their meals. Does she choose not to see all the signs of my demise or is she merely holding fast to the belief that once my cancer has stopped growing, all will return to normal? I worry that she is in denial and that she will be blindsided by my death. But I also don't want to force her to acknowledge a reality that she is clearly unready to face.
Damion is the complete opposite. He refuses to talk about it. He believes staying positive will keep me in this world. He is convinced I have 20 years left when I clearly do not. He clams up and walks away when I want him to show some emotion.
Tristan gives me tons of hugs and kisses. He knows mama is dying but he also ignores it...or he really doesn't understand it all. Honestly, I think all of this is too much for any child to have to bare.
I vacillate between wanting more time to make more memories, to tuck the children in one more night, to cuddle with them on the sofa and read. There are days when this minimalist life is more than enough. And then there are days like today, which start off with my head in a bowl and during which I spend hours in bed feeling physically awful and anxious, and I wish death would hurry. The reality is that what I want, or the way it vacillates, matters little. It will come in its own time.
Kevin bawled his eyes out finally for the first time the other day. No more tests," I told him, "I am tired of suffering." Tears welled in Kevin's eyes, "I love you too much to see you continue to suffer. I just want to make you as comfortable as possible so that you can enjoy your remaining time and we can make some more memories." We talked about moving into acceptance, together this time. It's an important first step.
"Butterflies"
When a romance is new
We greet it with the same anticipation we reserve for spring
When the world seems ripe with possibility and promise
When a romance is new
The sight of our beloved fills our bellies with butterflies
And we feel reborn into this otherworldly emotion that thrills and cajoles us
Delighting in what remains undiscovered and unknown
Butterflies compel us to follow them.
And follow we do
For there really is no other choice
But butterflies don’t last
Like the winged creatures that grace our fleeting summer days
The butterflies of infatuation move on and make way
For love
For infatuation is not sustainable
It will not endure the inevitable ebbs and flows of life
It cannot bear the weight of life’s tragedies
It imprisons us in a fragile house of cards
But love
Love envelopes us with comfort like a shirt perfect from years of wash and wear
And with that comfort we find freedom
to dance without fear of embarrassment
to bare our souls without fear of ridicule
to trust without fear of disappointment
to give without fear of being taken for granted
to err without fear of reprisal
to be ourselves without fear of rejection
With love
At the end of the day we fall into bed with the person
who echoes our laughter and wipes our tears
who shares our dreams and mourns our losses
who holds our hand, just because
who accepts us as we are, with all our imperfections
You miss the butterflies when they go
Longing for their intensity and their elusiveness
Set them free with gratitude
Without them, your love would not exist
But it is in letting them go that you truly become free
To love
I still don’t think I have the whole poet gift. To me, poems just seem like prose with shorter lines broken up in pieces. This suggests to me that I am missing something essential in my appreciation of this medium. But, then again, every once in a while a poem sneaks up on me and I am always glad when it does so.
Years ago I hated the way families were treated when no explanation for their child’s illness could be found. In some cases providers diagnosed such cases as Munchausen syndrome by proxy, in which an adult caregiver ensures that his or her child will experience some medical affliction and, consequently, causes the child to suffer treatment. While I have no doubt that there were cases worthy of this diagnosis, it always struck me as a little too convenient, a bit of a cop-out.
Perhaps I internalized this “blame it on the patient” tendency a bit. When I reach my bedroom out of breath, heart racing I tell myself, “You need to deal with your anxiety.” Or maybe it comes back to control, if it’s psychological, then I can reverse it somehow, “Maybe anti-anxiety medications would help.” Yet, I am on anti-anxiety medications.
I can tell my death is really starting to get to Kevin. He is so stressed out. I told him it was time for us to face to cold, hard truth: the end of my life is drawing near. It is time to make a living will, a will, plan the funeral arrangements, etc. He agreed but I could tell that he is still not willing to raise the white flag. And I need to see his surrender so have his permission to go.
I could not change the way I felt. I felt I was to blame somehow. If only I had zigged when I zagged, then everything would have been fine. “Why didn’t you trust your instincts?” I asked myself over and over. “This is all your fault. If you would just eat more, if you would just start taking walks again, things will get better,” I tell myself several times a day. But then I walk 10 feet to the bathroom and back, quickly becoming out of breath. Still the need for blame persists.
Being hard on myself is how I have achieved almost everything in life. I always expected a lot of myself though not in a mean way. I just set my standards high. It was functional for a long time, but now it has morphed into a process of self-flagellation that is making a bad situation worse. I knew on Tuesday that somehow I had to stop playing the blame game for good.
For months I have been sitting here blaming myself not because I truly believe it is my fault but because I want so desperately to believe that I can fix this somehow. I want so much to believe that all will be well if I just zig at the right time, make the right choice, or take the right medication.
What underlies blame is a belief that we humans have control. Sometimes we do, but probably far less often than we would like to think. I think I can finally let go of the blame now that I realize that it was just a corollary to the fallacy that I am in control of my destiny. And I hope I can reorient all that misdirected energy to something useful for a change.
Love you all and God loves you too,
Shanna xoxo
Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna
Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness
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