There is a name for my temper tantrum

Remember my temper tantrum, eating cookies and bacon and doing all the things I know that I should not be doing?  Being unwise, from a Buddhist standpoint?

Anyway, I recently discovered that there is a label for this behavior that has plagued me for decades, my rebellious nature. It’s part family, part ancestral (The Kerrs were noted as being ornery people in northeastern Scotland, eons ago) and part survival mechanism.  “Don’t tell me what to do!”

Oppositional Defiance Disorder.  

Yup, that’s me.

If you have that too, please do make friends with it.  It hold a great deal of life force within.  Sort of like having a two year old making your decisions, but with more experience.  Just watch out, it can lead to danger, too.

 

Advertisements

My Death Box

Several friends have asked me what is in my little “death box”.  So, here’s a list of files, so far:

  1. A list of tasks for Eric, after I die.  What, where, and how.  Want to spare him as much as possible.  Draft of a notice to post on FB, for example.
  2. A list of my little “treasures” and who I would like them to be given to.
  3. Who needs to be notified, and how to locate them.
  4. My Vigil Plan (2 or 3 days of active dying.  More on this later on.)
  5. How do I want my body to be cared for, after I die. (Turns out there are a ton of options! Some lovely rituals for me and whoever is there.)
  6. Cemetery choice, papers, receipts and plans on file
  7. How do I want my body to be disposed of .  (Again, tons of options now.)
  8. Death Certificate format, and who gets a copy.
  9. Obituary draft and where to post
  10. Memorial plans: photos, music, contracts with celebrant, location, etc.
  11. Will
  12. Durable Power of Attorney
  13. Medical Power of Attorney
  14. Polst
  15. Advance Directive
  16. Life Insurance papers
  17. Hospice via Providence, if applicable

That’s essentially it.  May be more files as time goes on, and I learn more.  This represents quite a bit of work, and thought and consultation, still ongoing.  With no children, and Eric focused elsewhere at the moment (he is working full time) this is my gift to make it all as easy as possible.  Is this all ready now?  Not at all.  Still working on all of it.  I plan to discuss some of the details here, as time goes on, if people think it might help.

Please keep in mind that I am aware that I could quite easily live another 2-3 years or more, but I have no way of knowing, I see signs of demise, and so I want to die in peace, without worrying about any of this.  I will be busy elsewhere, it seems!

I am a planner and always have been.  If you are not, forget it and just enjoy your life! It all gets done, one way or another.  Here at Rose Villa, I see some people planning on having their children deal with it.  I didn’t think that my little fur girl would be up to the task.

If this is helpful to you, then yippee!

 

 

Previews of Coming Attractions

One of my biggest fears, psychologically speaking, is to be accused of being the little boy who cried wolf.  In other words, becoming so focused on this dying business that I holler for help or a warning to my loved ones, when it isn’t really necessary.  It’s just so darned hard to know now, and I don’t want people who love me to be taken by surprise if possible.

This rash is an example.  Turns out it is both/and.  Another koan, of sorts.  My skin is dry because I am old, because it is winter, and because, when one is dying of kidney cancer, one’s skin is exceptionally dry and bingo, a rash.  Not a sign, this time, of imminent demise, but the cancer has a role in it.

I learned some new details about what this death might look like.  Of course, we might all go up in a radioactive blast, if the news has any validity at all.  But I mean, if I end up dying from this cancer.  For those who are squeamish, stop reading.  But here it is:  my feet and ankles will swell up so badly that I won’t be able to put my shoes on.  I will be nauseous and throw up, a lot.  (Already do this, several times a week.  Not a good sign.) I will become so confused that I will not know that I am confused.  (This happened in September of 2017; I thought I had a small stroke. Lately, my mind is cloudy and uncertain.) I will be covered with another obnoxious rash.  So, I get to itch to death?  That makes me laugh.  Sort of.

The things that I already know about include lots of pain, blood in my urine, swollen kidneys, people asking me to do kidney dialysis.  None of that sounds like much fun.  However, this is what it might look like.

What I do know, myself, is that nothing so far has gone like my oncologist predicted.  Because, in my experience, doctors do not factor in spiritual practice, intentions, missions, and the impact of love itself.  One’s community.  And the presence of all the angels and saints and spiritual guides and ancestors watching over us from who knows where.  Prayers, both received and sent.  Blessings, both received and sent.  And always joy, the immense healing power of joy.  And nature, which holds it all, for me.

So this is what I pledge to you:  I will not sound the alarm unless I am freaked out and need help.  I will continue my spiritual practices and continue to hold on to not knowing, and stay open to help from all sides, this one and the one up ahead.  I will work to help others dealing with dying and grief, and I will make sure that my book on transforming the fear of death gets finished and published, one way or another.

Bless you, each and every one.  And, as my old friend Annie used to say, so far, so good!

 

 

Teetering on the Edge

As a person living with a terminal diagnosis of cancer, I often lose my balance when something goes wrong in my body.  Because maybe it is the cancer making itself known in new and unexpected ways, and how do I know?  That question comes up over and over again.   Before cancer, it didn’t occur to me that I might be in real trouble.

Today in my Zen Buddhist Sangha here at Rose Villa, we talked about not knowing, having an open mind, beginner’s mind.  It helps us to stay soft and receptive.  But I have to say, I do not like to not know what is going on now in my body.  I do not like it one bit.  I have an active aversion to this.  I want to know.  Once I know, I’m good with it.

A few days ago, I found myself covered in a very itchy rash, mostly on my arms and legs, but also around my neck and back.  My skin is tight and swollen and the rash reminds me of when I was a little kid and got poison ivy to the point of going to the hospital.  It’s not that bad, actually, but holds that memory for me.  I’m up at 3 AM writing this, because the itching is driving me crazy.

I called an advice nurse last night who was fantastic, really listened to me, and then told me, among other things, that when someone’s kidney function goes haywire, people can get a rash all over their bodies before death occurs, and that can happen quickly.  Terrific.  Back to the edge.  I didn’t know this rash piece, and now I do.  Previews of coming attractions.  Is this it, my time is up?

Today I got a blood test and just read the lab report online that indicates that my kidney function is doing fine, so the rash is about something else.  Yippee!  I shall see a dermatologist shortly, to see what might be causing this, and what might treat it.  I was only teetering on this particular edge for about two days.  A memorable two days, looking into the abyss.

We learned some more about my blessed kidneys, and other forms of suffering yet to come.  Another scare released.  Seems to me that I get to die in slow motion, which is both pretty darn wonderful, a great teaching, and not exactly fun.

Meanwhile, a report from the strategic wisdom front:  I have put together the beginning of a draft of my obituary, with Holly’s immense help.  We are planning to print out my blog and make little booklets for people who might like to have a copy.  I don’t seem to be having a temper tantrum for now, always a good sign.

Over all, I am doing well, just itching, but not dying anytime soon.  Whew!

 

A Little Story of Two Boxes

When I was a very little girl, around 4 years old, we lived in a place called Fort Washington, outside of Washington DC in Maryland.  I have no idea why we were there, I was too little.  A parade ground arced around the front of our house, one of several Officers’ Quarters, with a large screened- in front porch.  A Civil War Fort?  Not sure, but old.

On my first day of school, probably Kindergarden or Nursery School, I received a small box all my own: papers, scissors, tape, crayons, a single hole punch that I have to this day, pencils, and I don’t remember the rest.  Heaven!  My love affair with office supplies and offices in general bloomed that day!  I wish every single child in America could receive such a bounty! Great way to start my life as a small being.

Fast forward about 70 years, and once again, I have a small box in my life, only this time it’s full of files, getting ready for my death.  Wills, Life Insurance, Vigil Plan, Memorial ideas, obituary draft, cemetery details, a list of my little treasures and who shall receive them as gift after I die, and so on.  My death box!  I am inordinately proud of this little box, a result of both my own work and the help that I have been getting from Holly, who knows about this stuff.  I thank god for her daily.

Meanwhile, in a little basket, I have been putting stickies with names of people who have harmed me in various ways, and names of people or animals whom I have harmed, one way or another.  Events that wake me up at night, in a long time rage or grief, as they keep washing over me.  By writing them down on a sticky, and putting them into my basket, I no longer have to hold them, and at some point Holly and I and perhaps Eric will burn them all in a ritual of release and healing.  So far, this seems to be helping.  Part of my strategic wisdom efforts, that does seem to be spreading out into my life, one barely noticeable step at a time.

And finally, my life does seem to be coming full circle in amazing ways.  Not only the little boxes, but I am now in contact with friends from elementary school in DC whom I have wondered about all my life.  Now I know some of their stories and hope to hear more.  I have heard their voices on my phone, and seen photos of themselves and their families.  What a gift to me.  One dear friend is dead now, but others are alive and thriving.  It feels complete somehow: Delight, Diane, Patty, Jane, Nancy, Carol, Jim, Sharon, and others.  Even Tuxie, a neighborhood dog whom I adored.

I told Eric today “I am happy!”, and realized later on that even better, I am content.  Precarious, but content.

Strategic Wisdom

Here is how the Buddha measured wisdom: you are wise if you can get yourself to do things you don’t like doing, but know will result in happiness; and prevent yourself from doing things you like doing but know will result in unhappiness or harm.  Pretty simple, practical.  Doesn’t mean it’s easy.

One of my many struggles lately is the “poor me” black hole: ” Poor me, I can’t eat cheese.  Poor me, I can’t eat sourdough bread.  Poor me, I can’t eat any sugar or caffeine or dairy or processed meat like bacon.  Poor me, I can’t enjoy eating out with friends.  I get overwhelmed easily if I am in a room with more than 4-5 other people.  Poor me, I have to sleep over 12 hours a day or I start to shake.  If I take a shower, it takes a few hours to recover.  Poor me, I seem to have a hole in my brain lately, I get confused easily and forget things, like water just flowing over me.  Poor me, I’m dying soon. ”

So my unwise reaction these past few months in the black hole is to eat cheese, bread, have sugar and caffeine, eat bacon, go to large gatherings, and act like a so called normal person.  It’s a little like throwing a tantrum.  Knowing that I will get sick, have migraines, sleep for days to overcome these assaults.  Knowing that the cancer in my body may be waking up and thriving.  I know all that, and I do it anyway.  So the defiant, harming part of my self has had the upper hand.  Unwise.  Understandable, but unwise.  I feel sorry for myself.  And I’m angry, too.  I fucking hate this disease and how my body is disintegrating.  I’ve been really sick now for at least 6 years, maybe even longer.

Christmas day I realized that I need help.  Beside from the huge help I recently got from my friend Greg on a spiritual and emotional level, I need practical assistance in dealing with life chores, and in my case, death chores.  I have piles of paperwork on the floor around my desk, and piles on my desk.  One sobering reality was to realize that not only was I not doing some of this paperwork as part of my tantrum, but also that I can no longer actually take care of all this paperwork.  My brain isn’t working well enough to do it.  I need help.

So I asked for help, and have found the very best person for this job anyone could ever want.  Another angel in my life.  We shall make our way slowly through these piles until there is order.  Asking for help in this instance is wise.

My  unwise reactions are killing me, slowly.   And so I am looking forward to seeing how this applied wisdom might affect the rest of my life.  A strategic wisdom.  Maybe it could spread, instead of the cancer.  I like that idea.  And the idea that wisdom itself could be such a profound spiritual practice.

I still want to die in harmony with the universe.

Confusion and a compass gone wild

Did you know that if lightening strikes a compass, it will reverse itself, pointing wildly.  But if its then shocked, placed on iron and struck, “the shock reorganizes the element of the magnet.  And again it points truly, knows itself.”

I’m reading a novel, Ahab’s Wife, by Sena Jeter Naslund, and that little jewel caught my eye.  And this: “Was it not possible instead for a human life to end in a sense of wholeness, of harmony with the universe? And how might a woman live such a life?”

Certainly that is a death, and a life,  to which I aspire.

However, in August, I heard some bad news regarding my cancer, and it threw me off course.  Or, to be more precise, I allowed it to throw me off course.  The news isn’t that awful, really.  One of the five nodules in my lungs had doubled in size, from a year ago.  The problem is that I have been convinced from the very beginning that the nodules in my lungs weren’t cancer at all, but basalt dust from a construction project I lived near for three years.  One grew.  Basalt dust doesn’t grow.  So, this news changes things.

I took a deep dive down into the blues for about two months, fucked up actually to the point of paralysis: not walking, not thinking, not doing… just watching the damn squirrels.  I did some vegetable gardening, that was good.  But I just let everything slide.

On some level I had begun to believe that I was going to survive this disease that I carry around with me.  And maybe I will.  But it looks like I may not.  In a way, I’m back to square one, just dealing with the sudden approach of mortality.  Just more experienced.

Then on September 22, just before a Ceremony of Remembrance began here at Rose Villa, I had a mini stroke and was massively confused for about 5 minutes.  So confused that I didn’t know I was confused: a new experience.

I called for help then, for home health to come, for a dear friend Greg Johanson to come and rescue me, for Eric, for neighbors here who know.  Lots of help poured in.

I think my inner compass had been struck by lightening in August when I accepted about the cancer now in my lung.  That threw me hard, into confusion and grief.  It took the mini stroke and the help I got afterwards, the shock of that, to reorganize internally and resonate with my inner knowing again.  Whew.  Took awhile.

These dark alleys can be scary.  I wasn’t sure I wanted to stick around much longer.  Now I am open to life and living and death and dying all at once.

Working on that harmony with the universe thing.