Independence Day 2018

I have been thinking a lot about independence.

Quite honestly, this Independence Day lacks the fireworks that others have had.  Or rather there have been fireworks of a different sort.

When P-M I got married, we talked about many songs that we wanted our first dance to be.  He wanted "Don't Fence Me In".  I told him that wasn't going to happen.  As we were getting closer and closer to our wedding date P-M made sure to remind me that he was not going to give up his independence.  I, on the other hand, had waited my whole life to get married so I was more than happy to give up independence.

And then it struck me!  He and I have different definitions of independence.  His equates to having the choice about his freedom and mine was about having a radius around us that I wanted to say within.

Today, July 4, 2018, independence has a different meaning all together.  But to understand independence, I have had to learn about dependence and interdependence.

I think for many people dependence is a sign of weakness.  You're dependent on something so that must mean that you can't stand on your own two feet.  But I'm learning that dependence comes with allowing yourself to feel the full humility of being alive.  Pierre- Marie and I are dependent on our doctors, our nurses, the medication, on the insurance company being able to communicate with our doctors.  He is dependent on nurses to help him clean up and walk around.  I am dependent on doctors to help me understand what is happening to him, to tell me when the chemo didn't work or why he is so disoriented he thinks the nurses are living in the wall.  It is an incredibly humbling experience to rely on others to tell you if you are ok or not.

I am dependent of family and friends to help me figure out when it's ok to step away and to bring food when I can't.  I depend on visits and phone calls and people reading this post.  I depend on friends to let me come over at 9:00 after leaving the hospital, a little too late for them but not so late that they don't invite me in.  I depend on my sister to push me to take a mini break so I can get the pleasure of falling asleep with my five year old niece, her soft little body curled into me.

These are chemo cards.  I made them for P-M.  He can read them from his
bed which I hope helps to ground him when he starts to fly. 

This is of course different from the interdependence I have been a part of.  Pierre-Marie and I are interdependent on one another.   I rely on him getting better and he relies on me to be here through the ups and downs.  Sarah relies on me to give her updates about what is happening so she doesn't feel too far away and I rely on being able to call and have her come down when I need a break. I rely on Simon to walk Mika and he relies on me to make sure that his dad is taken care of.

And it is through the dependence and interdependence of our lives that we hope to find some independence in the next few months.  He wants to have the choice to be free from hospitals and doctors and hospital beds and needing help to go to the bathroom.  He wants to choose when he sleeps, what he thinks and have the freedom from being poked and prodded.

But in the short term, I think he wants some independence from the brain toxicity that has addled his mind.  One side effect of the ifosfamide is an altered state of consciousness.  This has been P-M's world for two days now.  As he describes it, there is vertical reality and a horizontal one.  He is concerned about who is going to save the human race.  He thinks it could be me or Simon....Great one more thing to add to my list.  SAVE HUMANKIND....but then he told me that it wasn't me because he didn't see the mark on me.  Crisis averted.  And then reassured me that my bloodline was being protected in India.  Well thank god for that!

At times, he comes back to me.  My P-M.  He looks like my husband and calls me "baby" in the way that only he can.  And I welcome him back....and then slowly his eyes change and he begins to wonder why the nurses live on the crack in the wall and I know that I have some time to wait until my husband returns.

These are scary times....in so many ways....

On this Independence Day, I am hoping that the many "bodies" being attacked by the many "cancers" are able to find friends to depend on, compatriots to rely on and independence from that which attacks them.