Double vision that could have been otherwise

Good morning everyone.  I’m going to try to write weekly to keep myself and anyone else up to date with me.  My mornings usually go like this.  One eye opens—that is, the good, right eye opens and just takes a second to look around .  Then the other eye, which isn’t very helpful, opens and we survey the neurologic landscape and make sure I haven’t awakened with any new defecits.  So far so good this week.  I get up and sit outside on our wonderful patio and write a bit.  Chip has made this patio so lovely with all the pots and plants, that I love just sitting here.

I’ve been a bit selfish lately.  It is easy for me to talk about preparation and death and to have an article written about me talking about surrender, but it isn’t so easy for my family.  I will not be left with the aftermath, will I?  Let’s go back to that article.  I am thankful for Regina Brett and her coverage.  She is so thoughtful and articulate and never oversteps or exposes in any way I don’t want.  I was struck, however, by the use of the word, “surrender”.  Is that what I’m doing?  I don’t feel so much as if I am surrendering as maybe “plunging into the truth” of the disease process.  Yes, I like that a lot better.  I may be done with fighting, but I am not finished with the new shift from doing the fighting to being within the disease process. And neither is my family, but we take it day by day.

I want to tell a story about yesterday’s visit to the eye clinic.  I had been begging the oncologist and her scheduler to help me get back into the neuro-ophthalmologist’s office to help me with the double vision.  The patch does work, but it is a bit uncomfortable, I look like a pirate (but I am told I am rocking it), and it is very dark.  I was just hoping that there might be another solution, but not sure what it was.  I have a friend who uses prizms to help with double vision.  I just thought there must be some answer other than having to be a pirate for the rest of my days.

So thank you to the scheduler of all time, I had an appointment yesterday.  And thankfully my sister came with me, because  truthfully she is the one who came up with the answer, but I am ahead of myself.  I first saw a young resident who was very nice.  We talked a bit, and I know there is something very hard for young doctors to accept that whatever the process is that is causing my double vision isn’t something they are going to fix.  Yes, there must be something in my brain – my 6^th nerve, the bundle of fibers that helps coordinate movement between the eyes—yes, the cancer is there and can’t be fixed by another brain scan.  But it is so hard; I remember.  We want to fix people, not just help them with their symptoms.  We talked some more.  I touched her hand and said, we can’t fix the process, but I bet you can help me with the double vision.  She tried.  She was adorable.  My problem remained that the double vision is significant enough that prizms probably won’t help.  Then the young neuro-oncologist  came in and he helped show the resident about the prizms.  We then talked about occluding one glasses eye with scotch tape (I could have thought of that, I think).  Scotch tape isn’t very visible from the viewers side and is still blurry enough to make me use only my right side.

Just then, my brilliant sister said something like, “how about an opaque contact lens?”  We had discussed this at home a little because the hairdresser I had seen had actually been the one to suggest it!  The eye doc thought it was probably a great idea and had to go talk to the optometrist to see if such a thing was possible.  Sure enough, I ended up in the optometrist’s office with my right eye blurred by a contact as far from my correction as he had.  This means that I have my right eye blurred fully by a contact and my L eye is  using my normal corrective contact.  What our amazing brains can do is delete the blurry side so I see only out of the right WITHOUT the double vision.  It is very like wearing a patch but without the darkness and discomfort.  It isn’t yet perfect; he said it would take a day or maybe a little more to adapt, but adapt I am doing, and I could have hugged them all.I am so glad I went for so many reasons.  They seemed to initially have a hard time with a well-appearing former doctor whom they couldn’t fix, and had truly never thought about an answer such as the one we ended up with.  But they did fix me; I kept saying it.  I want you to help me with the symptoms; just the symptoms.  You cannot help me with the disease and that is ok.  Doctors.  Perhaps they learned something too.

So finally I want to brag a little.  Recently, the “Back Page” of Inside lacrosse  magazine came out.  Will’s coach at Bates has written this column for years.  This edition, however, was about Will (renamed Dennis), and how he transformed his junior season.  Actually, it is about a great deal more than that, and I’ going to post it as soon as I have it in my hot little hands.  He had an incredible freshman season as a lax recruit, sophomore year he lost it all, wanted to transfer and was more unhappy than we realized.  Early in his junior season, he heard his mother was much sicker than he realized, and he had to balance all of this with a heavy lacrosse practice and game schedule.

So what does he do?  He asks for help.  This seems so easy, doesn’t it.  Was it easy in college?  I don’t think so.  He asks the coach to help him go back to the basics and be more productive for the team.  So they throw thousands of balls.  He also asks the team for help with the mom thing.  And they wrap him up and don’t let him go.   With his wonderful goodness intact and against significant odds, he found himself again and matured into the player and man he is learning to be.  And in his lovely style, he read the article to us, and at the end as we are all in tears, he says, “Well, I guess if I wouldn’t jump out off of a bridge for him before, I would now. 

LIfe is so full of surprises.  We are all here not knowing what is coming each and every day, but we are learning to live within the process as best as we can and find fullness and joy every day.  Perhaps it is a "willing acquiescence to what is".  I like that .  We have also just begun to make excursions daily, and this gets me out of the house and in someone's car to something.  Did you know that we have an amazing greenhouse down on MLK boulevard?  I had never been.  It is incredible!  We also seem to have the William McKinley memorial here outside of Canton.  Ok, we are going and we'll report back!  We are all sure we are related.

How about some poetry:  I love this Jane Kenyon, and isn't she so right.  Try the Kabir.  He was an ecstatic poet like Rumi so he is a bit out of his mind as he creates poetry.....

Otherwise (Jane Kenyon)

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.
I took the dog uphill
to the birch wood.
All morning I did
the work I love.

At noon I lay down
with my mate. It might
have been otherwise.
We ate dinner together
at a table with silver
candlesticks. It might
have been otherwise.
I slept in a bed
in a room with paintings
on the walls, and
planned another day
just like this day.
But one day, I know,
it will be otherwise.

The Time Before Death (Kabir, translated by Robert Bly)

Friend, hope for the Guest while you are alive.

Jump into experience while you are alive!

Think....and think....while you are alive.

What you call "salvation"  belongs to the time

before death.

If you don't break your ropes while you are alive,

do you think

ghosts will do it after?

The idea that the soul will join with the ecstatic

just because the body is rotten--

that is all fantasy.

What is found now is found then.

If you find nothing now,

you will simply end up with an apartment in the 

City of Death.

If you make love with the divine now, in the next

life you will have the face of satisfied desire.

So plunge into truth, find out who the Teacher is,

Believe in the Great Sound!

Kabir says this; when the Guest is being searched for,

it is the intensity of the longing for the Guest that

does all the work.

Look at me, and you will see a slave of that intensity.

We all need some soul-swans

Dear Stalwarts All,

Good drippy-wet morning of May to everyone.  I have been thinking lately that I am going to use my blog to chronicle the rest of my life.  I feel so much better without nausea or pain or any of those nasty things that I don’t want, but I feel like I have the unique opportunity to prepare for something that has been prepared for and done for ever and ever --death --and talk about it openly. 

And yet, at the moment, my family and friends are wrapped around me and I feel as if I am having a stay-cation at home.  We have breakfast and talk, we stand aside as the crazy husband fills yet another pot of flowers (we will have to water those, remember Chippie dear?????) , we have family dinners and laugh and talk.  We are all thankful that things seem to be a little stable now, but I know and they do too.  This disease process is walking right next to me, moving across my face so that I am having trouble seeing, moving around my nervous system and peeking up down that arm or around that chest dermatome or on the top of my head.  She has me by the hand but isn’t pushing.  We’ve known each other well over the years.  I don’t know whether to hate her or to feel some other way.  I have asked this before.  She left me alone for 10 years or so as we made professional lives and launched kids, but then she raised her head again.

Here’s the thing.  I’m tired of playing warrior now.  At some point that I can’t quite remember, maybe it was the 5^th or 6^th chemo treatment with my hands. and feet and soul bleeding  a little bit, I think I got tired.  I am still tired.  This particular advanced stage breast cancer issue I’m dealing with has no good treatments.  Whole brain irradiation or chemo directly into the cerebral spinal fluid just sound awful and full of side effects and poorly effective.  I am a Libra for goodness sake; we don’t make decisions well, but this one is easy.  No more treatments.  Luckily for my Libra-self, my counts are too low anyway.  I would not tolerate any treatment either.

What I didn’t know is that I would have the opportunity now to feel good and get on and live the best way I can now with everyone by my side.  I think that is the best preparation I can make—for me and for them.  I will be open about what is happening, we will have to talk about death and funerals and all those practical things, but we also have the opportunity to talk about us, remember how we met, record, draw, play how the kids were born and their unique foibles that we love and laughed at so (sorry guys), and still laugh at, and how we are as a family now.  I don’t think we often sit down to do talk about these things, and I love that we are. We all should, shouldn’t we!  I am appreciating what I have by the bucket load these days.

And I have the opportunity to read (well, at least with one eye!), write, consider and think about what I really believe with lots of wise people around me weighing in.  Dare I use the L word?  I do feel lucky.  I’m sure I won’t, and I didn’t feel so lucky when I felt so poorly a few weeks ago, but the darn word does keep bubbling up.  I feel happy now, if I know what that word means.  I feel full; I don’t regret much at all, I have lived a lucky life.  I am well loved and I love well.  I have the opportunity not to work right now, etc.  My father asked me a question when he was very sick.  He said, “Why do you love me”.  Clearly it was a hard question for him to ask; he certainly didn’t make it easy for his kids to understand him.  I don’t need to ask that question; I am lucky.  

But ok, just for yucks, here’s my one regret.  After playing field hockey in our senior year of college, some of us where asked to go to the Olympic training camps and try out.  I didn’t go.  Now I’ll never know if I might have made the team or not.  I thought I had other places to go; I needed to take a few classes before applying to medical school.  Dumb!  Remember this out there!!!  Take those things offered to you even if they aren’t exactly on your idealized track!!!!  Ok, that is pretty much it.

Today is our 26^th Wedding Anniversary, and if it weren’t for our lovely friends, Mr. and Mrs. Friend, we would have both forgotten.  We do it every year and then laugh at ourselves.  We might even go out to dinner now that we “remember”.

There is just one poem that has been been banging around my brain for awhile.  I first heard it at a retreat in Mexico years ago, and I still am not clear exactly who wrote it, but I believe it was a 15^th C princess named Mirabai who is really known for her music.  This poem may then have been a chant or something, but it is quite beautiful, and I love thinking I have soul-swans of my own.

Oh friend, understand.

The body is like the ocean, rich with

Hidden treasures.

Open your innermost chamber

And light its lamp.

Within the body are gardens,

Rare flowers, peacocks; the inner music;

Within the body a lake of bliss,

On it, the white soul-swans take their joy.

                                                            -Mirabai