Moving Right Along

Lilac Watch 2008

Soon.  They will be here very soon.

My mother grew up in New England.  When she and I would go on little drawing and walking excursions to the botanical garden in the part of Southern California where I grew up, she was enchanted to discover, and to share with me, a favorite flower from childhood:  Syringa vulgaris, the common lilacs.

Except in daydreams inspired by various literary sources, I never imagined then that I would live here in New England myself, not to mention anywhere so close to a botanical garden which celebrates the lilac every year, on Lilac Sunday.

This week, as you can see, Love Thursday has me thinking in circles, or spirals, of roots and branches and sweet smelling, candy colored flowers.  Hope your thoughts are as pleasant.

The Third Gift

After the excitement of yesterday, I am ready once again to speak of love.  Thank you for your kind indulgence while I pulled myself together.

You are probably sick to death of me going on and on about my recent brain tumor experience.  Well, too bad, because it was a very big deal and I am still processing it.  Also, I have not yet finished listing for you all the amazing gifts it brought me, love gifts which I have done nothing in particular to deserve.

The first gift I managed to tell you about was the free treatment, including ungodly expensive but free to me expert resection surgery, courtesy of the Commonwealth of Massachusetts.

The second gift was, of course, a gift I already had, but which was revealed to me in new levels of beauty, and that was the wonderful trustworthiness of my true love.

Now, for this Love Thursday (albeit a day late), it is time for me to tell you of the third gift:  my family, specifically my fabulous sister and mensch of a brother.

It's hard for me to know what to put in this post and what to leave out.  See, my siblings and I, we come from a wonderfully unique, fairly privileged but also severely damaged (and damaging) household.  I don't really want to hash all that out here, only partly because under no circumstances do I want to purport to tell my siblings' stories.  They can tell those themselves, if they want to.

Also, I don't think my sister and brother want you walking up to their houses and pressing your noses against their laundry room windows, not even metaphorically, and I don't really want to subject them to that.  But I really need to tell you how great they've been to me lately, how completely unexpected -- yet welcome! -- their help was, and to do that I have to put it all into some kind of context.  It's a little bit delicate, this undertaking.  I hope I can pull it off and let you know how much their presence in my life at this time has meant to me, how amazing it has been for me to feel their love for me just now, love I genuinely did not know existed and still don't really understand.

We all saw each other at my niece's wedding in September.  When I had my leg cut off almost five years ago, they were told it was going to happen, and they supported me however they could through that, from California and Nebraska, but I didn't ask for anything because there was really nothing for them to do.  I didn't need them here, and they would have been in my way if they had come.  I did need loving and supportive phone calls.  After getting completely screwed into utter financial devastation by insurers contracted on my behalf by my then-employer Whole Foods, I did need financial assistance getting our car adapted for my use by the time I was ready to drive again, and my sister came through with that as a 41st birthday present, courtesy of some tax repayment scheme of Gov. Schwarzenegger, she insisted.

(Okay, that's weird.  The automatic spell-checker on my Windows-controlled PC, the one that underlines in red every word it doesn't recognize, has not underlined the name Schwarzenegger, but when I wrote to my friend K. today about some muffins I'd made, it did underline the word streusel.  And there, it did it again.  What's wrong with this picture?

Um, sorry.  Back to the tale at hand.)

The last time I talked to both of them before then, in fact the last time all of us were in the same room together, was after my mother committed suicide.  I don't even remember what year that was -- 1991, I think?  I only know this by adding her age at the time she died to the year of her birth.  Really, I was so very shell-shocked, but that's beside the point.  The point is, between then and now, my brother got on with his life in the Air Force, moved to Nebraska, raised his daughter, mustered out of the Air Force honorably, and began work in the private sector.  My sister continued raising the two children she'd adopted within six months of each other a couple of years before, who had appropriately become her entire life for the next 18 years, plus she continued running her financial planning business and her home.  I went my own way, stayed married to the wrong man, unable to get away until rescued by my true love, then gone forever to Massachusetts pretty much without a word to either sibling.  I couldn't imagine it would matter to them.  And honestly, whether they knew where I was in the world or not didn't really feel like anything that should matter to me.  I wanted no help, no drama, no advice, nothing.  I just wanted to get away and get my new life with my true love off the ground in peace and safety, even if it meant completely orphaning myself.

A few years later, my sister noticed I was gone and got in touch with one of my oldest friends now living in Missouri and bullied my address and phone number out of her, threatening to hire a private investigator if she didn't cough 'em up.  I was angry at the time, angry at my friend.  After all, appropriate etiquette when someone is looking for someone you know how to find is to take down the seeker's contact information and give it to the sought one, leaving it up to the sought one to decide whether or not to make contact.

My friend understood that, but really felt this was different.  The seeker was my sister, after all, not just anyone.  Based on my experience of my family at large, I could not tell what difference that could possibly make.  And honestly, I still don't know.  Actions speak louder than blood to me, always have, probably always will, and there had been no action of any kind passing between us in years.  But as I have had to admit to both my sister and brother, there's a lot of stuff other people are born understanding that I have to have taught to me.  This -- the instinct for family connection -- is just another one of those things.

So let's not dwell on old arguments.  Let's fast-forward to a month ago.

A month ago, as you know if you've been reading this blog for at least a few weeks, I found myself physically incapable of literacy, unable to remember stuff like my true love's last name, freshly diagnosed with a big ol' brain tumor, and jacked up on a steroid named decadron that made me very, very tense.  Though doctors assured me they did not think this would kill me or ruin me immediately, they could not guarantee that I would come out of this experience unscathed.  I needed surgery, and soon.  They could not guarantee that after surgery I would be able to recognize written language, read, write, speak, or see, or that even if I could do all these things, that I would be able to do them as well as I could, oh, say, back in December.

I panicked, but not so much over the potential loss of words or sight.  Sure, the idea of that made me very sad.  These things pretty much define me, or so I always thought.  But I was surprised to find I panicked most over the potential loss of people.  I have friends, family, and assorted correspondents I deeply love all over the world.  They are mostly very, very literate people, and shy nerds like me who prefer safety and quiet and thinking.  And how do we stay connected?  Nay, how did many of us connect in the first place?  Not by telephone, no.  And in many instances not in person, not at first.  It all happens or kept happening by the written word.  I have entire relationships which are made entirely of words typed into computers.  If you are reading this, you probably do, too.

I panicked over the loss of these relationships.  I panicked over the loss of these people in my life.  Some of them live as close as the next town over from mine, and yet they probably didn't even know I had stopped being able to read their e-mails a month before because I had been waiting for new eyeglasses that I thought would help me read better to write and tell them.

So the very first day I could read and write after being put on decadron, which did reduce the swelling in my brain to allow some improved language function fairly quickly, I decided to compose a big e-mail informing everyone whose e-mail address I could find of what was happening to me, what might happen to me after surgery, and imploring them not to lose touch with me.  (And remember, I had a brain tumor, so if you didn't get a copy, don't assume I don't love you; I just couldn't find your e-mail address and/or remember your exact name that day.)  I included my phone number, which many people had never been given before -- because there was no need!  Because we wrote everything we had to say to each other!

I couldn't just call people myself because I couldn't operate a telephone.  I couldn't read the buttons or remember them by touch, and the LCD screen was practically invisible to me.

I included my brother and sister in the mailing.  I argued with myself briefly over whether to do this, because...I don't know.

First, I really hated dropping this news into anyone's mailbox; no one wants bad news, and if you care about someone, hearing that s/he has a brain tumor is bad news, right?  Really bad news.  It's especially bad if the person can't tell anyone more than the sheer fact of it, no particular prognosis except that no one expects him/her to die of it, not even a name for what kind of tumor it is, but that there's this possibility that s/he won't be able to read or write ever again after it comes out, that this might in fact be the last correspondence s/he is ever able to send you and that if you reply in writing, s/he might not ever be able to read it.  Kind of a lot to dump on someone out of the blue, right, especially when other people have their own sh*t to deal with, sh*t of which any given correspondent may be entirely unaware?

And it seemed just so ridiculous to sweep all of a sudden back into my siblings' lives with this huge stinking drama, or potential drama that might not even be all that big a deal in the end but was certainly terrifying for me.  It felt kind of like something my mother would have done, just for attention.  She was really big on drama, and did often enjoy making mountains out of molehills.  A brain tumor is not a molehill, but my siblings didn't really know me as a person.  How would they know I wasn't just pulling a Mom-like stunt of some sort?

I think I was also afraid not that they wouldn't care, but that they...I don't know.  Maybe I feared that they would reject me or even just treat me coldly and distantly.  What had I done for either of them in the last twenty years, after all?  I was sure they would be sorry for me -- well, no, I wasn't completely sure of that, either.  I didn't know what to expect.  So I expected nothing. Maybe there'd be a note from one or each saying, "Oh, sorry!  Let me know if there's anything I can do," and nothing more.  I didn't even expect that, though, truth be told.

This is not what happened.  None of this is what happened.

And just so you know, if I were actually speaking to you in person, I'd be choking up and dripping tears at this moment, just because I am still so completely overwhelmed with gratitude over what did happen.

Okay, I am choking up and dripping tears, but I can still type.

My sister called that same afternoon and offered to fly out here.  She says my true love actually came right out and asked her; I remember that she offered, and we gratefully accepted, but I had a brain tumor, so either story could be true, or some combination of both.  Regardless, she canceled a trip to Cabo with her husband, which was supposed to be a conference related to her business but also a nice little vacation for the two of them, and sent her business partner instead.  Then she booked a flight that would bring her to me two days before my surgery, partly so she could help my true love, but mostly so she could just spend time with me while I was still/again (thanks to decadron) sort of myself.  Her husband had the flu, so she went to her GP and said, "Look.  Let's forget for a minute everything we know about how antibiotics don't do anything against viruses, and you give me what they give people who work for the government to protect them against anthrax."  (At least, I think that's what she said when she was telling me this story.  I only heard this part right after my surgery when I was still a bit cloudy.)

And then she came here and was my mother for a week. 

My brother, to whom I hadn't spoken more than a tiny, tiny bit on very specific occasions in possibly almost 20 years?  My Republican, ex-Air Force brother, with whom I really thought I had absolutely nothing in common except our parents and some bad family road trips?  He called me on the telephone that very day, too.  In fact, he called me every single day, usually on his lunch hour, and talked to me (or rather listened to me ranting, at speed and often shouting pitch) for over an hour just so I wouldn't feel lonely, bored and scared.

Every day.  Every day 'til I told him I was better.

Since my sister couldn't stay indefinitely, he also made arrangements to come in the event my true love and I still needed help after she'd had to leave.  Yes, he, too, was ready to drop everything and come to Massachusetts in bare and frigid early March just to help take care of me, and my sister was ready to foot the bill.

When my sister got here, after only a brief rest at her hotel, she started by hanging out with us and being generally helpful and cheerful, and then the next day, she also babysat me for awhile after my true love and I had concluded our hospital testing-and-paperwork appointment so my true love could get rest and have a period of silence.  (Babysitting included at one point walking her tiny Californian body all over the grounds of the DeCordova in stark, still frozen, early March eastern Massachusetts for the last two hours before dusk just so I could work off some of my fear and also maybe look at one of my favorite places the day before my surgery, just on the off-chance that I might not be able to see it as well ever again).  When our landlord told us he could only get a plumber to come fix the water mysteriously leaking from our bathroom onto our downstairs neighbors' heads on the day of my surgery, she's the one who liaised with him to make sure nobody accidentally let our new/used cat back out onto the streets from which he'd finally allowed us to rescue him.  She bought and/or cooked for me all natural, completely plain and organic food (like poached salmon and masses of steamed vegetables) so I wouldn't have to eat hospital food.  (I never do, but that's another post for another day.)  She ran interference with nursing staff as appropriate.

When I woke up from surgery, she was the first person I saw who didn't work for my surgeon.  When my breathing was severely impaired by lying in one position for about 18 hours straight after surgery, she guided me through some yoga-based stretching exercises to help open my lungs back up.  (I was too cloudy post-surgically to think of this myself, and also I was completely crazed on the double-dose of decadron they had given me during surgery.  One of her most constant instructions to me during this session was simply to "slow down."  Heh.)  Finally, she was the person who was there to get me checked out of the hospital as early as possible after my doctors had agreed to release me, not to mention walking me around the ward while we waited for the very busy nurses to have time to do things like pull out my IVs and brief her on my meds.

All through this entire ordeal -- and make no mistake, even with the wonderful outcome, it was an ordeal -- I only cried once.  I didn't cry when I heard I had a brain tumor, though it chilled and shocked me, nor during the many long hours I had to myself to do nothing but think about it with no actual information about the situation other than the bare fact of it and no way to reach anyone in the outside world because I couldn't even have operated my cell phone if I'd had it with me.  I didn't cry over what or whom I might lose, though thoughts of them made me very sad.  I didn't cry with nerves (I laughed) or frustration (I screamed and cursed and sometimes also laughed).  I didn't cry when I couldn't understand what people were saying or read signs on the wall that I knew were written in English.

You want to know when I cried, finally?  I cried when my sister was leaving to catch her flight home.  I was trying to thank her, but I started to cry instead.

"I didn't think you'd come," I told her, "but I'm so damn grateful that you did."  And then I hugged her while blubbing uncontrollably.

A conversation I had with my brother the day they discharged me from the hospital -- where he had continued calling me daily to keep me company, keep me from being bored, and keep me from being scared -- went rather similarly, though of course he was in Nebraska so there was no hugging.

"And I still don't know why you would care, or come through for me," I told him.  "I have done absolutely nothing to deserve it.  Nothing."

"But you're my little sister," he told me.  "I will always be here for you.  I have learned that nothing in this world counts more than family.  Nothing."

I have no idea how he learned this.  It certainly wasn't from our family -- except maybe a bit from my sister.

And you know what both of them said to me, over and over again?  "We're just so glad you asked us for help this time."

("Heh -- I like to save it up for when I really need it," I told each of them separately. 

"Well, I guess so," each of them replied to me separately.")

"We're just so glad there was something we could do this time."

Dang.

Okay, so this might get me beaten or killed (metaphorically anyway), but you want to see these gorgeous people?  Right, here you go.

This is my mensch of a brother in a Christmas greeting photo which I originally thought had been taken around the time I last saw him -- before the wedding in September, I mean; back seventeen years to when our mother died, or maybe a little earlier -- but which it actually turns out was taken in 1985.  (Read the back, Sara; duh.)  Honestly, I am shocked at how much time has passed since I received it.  The little girl in the picture has given her parents four grandchildren by now.

This next one you'll have to click to enlarge.  This is one strip from a contact sheet I printed while still in art school, age 19 or 20, which is comprised of shots from one of the last little adventures my sister took me on before our freezing walk around the DeCordova grounds this March, maybe 25 years later.  Oh, and the hilarious canoe excursion we went on this summer when she visited me for a day.  Are you detecting a boating theme?  Everywhere we've gone together in my life, if there have been little boats to rent and mess around with, we've usually tried to get one.  There was just that 25-year hiatus.

I was living in L.A. at the time this particular little boating adventure took place, visiting my sister and her husband, cat, and dog for a weekend in their adorable, small Berkeley house.  She decided we should go to Lake Merritt in Oakland for the paddle-boating and a petting zoo that used to be there -- and might still for all I know.

Once upon a time, we were all young and beautiful and fully able bodied.  We're none of us young anymore, not really, we each have our infirmities -- heck, I don't even know if I can paddle a paddleboat anymore with just the one leg -- but I see more beauty in each of my siblings than I ever have before.

As much as we fought and fought bitterly as children, our parents did always say we would get to this point, but I never believed them.  As years have gone by, I have found less and less reason to believe much of what they told me that wasn't about art, music, or basic cooking -- and even some of that I'd challenge them on if they were still around.

They were right about this one, though, weren't they?  Okay, guys.  I'll give you this one.

Well, at least my butterfly came back.

Note to self:  Do NOT schedule for any future Thursday an MRI with contrast or any other test, examination, or procedure that involves people stabbing me repeatedly with needles while playing Find the Vein! and me crying and screaming and generally freaking out loudly enough to be heard in the waiting room.  I regret to have discovered that such things simply do not leave me in a loving mood.  Accordingly, this week, once again Love Thursday will fall on a Friday here at Moving Right Along.  Stay tuned.

However, I was at least able to discover something else as well.  I discovered that the butterfly in my brain is back.

Many healthy brains contain butterflies, or at least things that look like butterflies on certain "slices" of an MRI.  I think they are really just cross-sections of ventricles that show up this way the same way you can get a five-pointed star made of black seeds in the middle of an apple by cutting it from side to side instead of top to bottom.

This is what my butterfly looked like on March 4, the day I finally allowed myself to be admitted to Emerson Hospital because of my massive headache and increasingly freaky mental symptoms, when I still had my tumor and my consequent brain swelling was pretty much at its peak.

This is what was causing that, top view.

Gigantic mo-fo that tumor was, no?  I mean, I knew it was "the size of a golf ball," and I even saw a special CT scan they took for my surgery as I was being wheeled into surgery, but until I saw these pictures I had no idea what that really meant for something inside my skull.  A golf ball's not that big in the palm of your hand or perched on a tiny tee, and I have a huge head (third-largest in my high school class, as previously discussed).  But look, even in my skull, that's really quite a bit of real estate!  No wonder my head hurt.

Well, it's gone now, and this is what my butterfly looked like today:

Pretty.

So, I guess the pain, bruising and humiliation were worth it just so we could all see this?

Um, ask me again tomorrow.

Artifacts of Trust

This week, Love Thursday comes on a Friday here at Moving Right Along.  This is because I napped all day yesterday, and then my true love came home from work, we got a month's worth of recycling finally out to the curb in time for today's pickup, and then, when I was about to go off to type this, my true love pointed out the irony of my needing to spend time writing a Love Thursday post about how wonderful he has been to me lately when I could instead be spending time with him.  I had to concede that he was right and that this could wait.

But now let me tell you how wonderful he has been to me lately.  I really need the world to know.

For the control freak that I am, the hardest thing about having a brain tumor was handing my life and fate over to other people.  Completely.

Because my brain tumor was caught when it was, I still had just enough presence of mind to know that I needed to assign someone the legal right to make decisions for me.  My true love and I have cohabited nearly 13 years but are not married, and Massachusetts is not a common law state, so if I didn't fill out documents granting him that right immediately, it would pass to my siblings.

My siblings are good people, but until recently, largely unknown to me and vice versa.  Except for the wedding I attended in September, we really haven't spoken much in the last 20 years, and I didn't know if they would even be available to help me, let alone whether they would know enough about me to make correct decisions.  My true love, of course, knows absolutely everything about me, and his knowledge is not just detailed but up-to-date.

Of course, as every semi-responsible adult should, we already had documents like this from before my last surgery and also from before his.  Having worked for assorted lawyers here and on the west coast for over 18 years, I know the value of such documents, and any time one of us is about to go under general anaesthesia, we make new ones.  We really should do it more frequently, though, and by the way, so should you.  They do expire, and also our needs, philosophies and desires evolve -- which is why these documents expire; it's actually a rather wise law.  People change.  You don't want to be subject at age 50 to the consequences of your 22-year-old self's world views.  Trust me; you really don't.

In my case, even 45 is already so different from 40.  I've learned some stuff, you see.  And I was so sure of what I "knew" at 40!  But I digress.

I used to be married to someone extremely bad for me.  Before him, there was an intermittent stream of many, many men about whom I cared little and who cared little about me.  There were whole years at a time with no one at all.

Now I have my true love, and you'd better believe I don't take him for granted.  He is one of the most amazing gifts of my life.  I am quite sure I don't deserve him.  I also have no idea what he could possibly have done to deserve to be saddled with me.  We only met because I wandered into a bookstore/café one day because I had missed a bus and needed to fill the hour before the next one came.  There he was with his beautiful eyes eating chili and sassing the counter help.  We fell in love in the next six months over sarcasm and cappuccino.

Monday, incidentally, was not just my birthday but also the anniversary of our first real date.  But that's not the only reason why I'm writing about my true love for this particular Love Thursday.  I'm writing about him because his actions exemplify one of the cornerstones of a real, live, not-out-of-a-fairy-tale, true love:  absolute trust fulfilled by absolute trustworthiness.

The thing that is most magnificent about my true love is that I can literally trust him with my life.  I have always known this on some level, but what we just went through together has proven it beyond the shadow of a doubt.

You know those documents I mentioned above, the ones I needed to fill out so he could have the legal power to care for me?  This is the best idea I can give you of what those documents looked like when I signed them.

That document?  That's my Massachusetts Health Care Proxy.  That's the document that gave my true love (and my fabulous sister as an alternate in case something happened to him) not only the right to talk to my doctors about my case, but also ultimately the power to decide whether I lived or died and in what condition.

I also filled out a document called a Durable Power of Attorney. 

This gave my true love the power to sign documents for me, and it was revocable so I could just go back to being in charge of my own life as soon as my faculties returned.

This was very important because there are a lot of documents that need to be signed when you need to have things done for you in hospitals.  Also, I may have been incapacitated for a long time, and who would do my banking and things of that nature?  As you can see from the previous photo, I was not going to be able to read any of them for at least a little while, maybe forever.  I also had memory and comprehension issues, so even if I could have recognized written language or seen out of both eyes at once, a lot of the time I couldn't sustain concentration to the end of a single sentence or remember what had just been said to me within the previous ten minutes.  I couldn't remember people's names, either, people I knew well and people I'd just met.  It was terrifying.

Between diagnosis and surgery, I was on decadron, and it did help reduce my brain swelling enough that I could read and write for about three days before my surgery, and could even remember some of the stuff I'd forgotten.  I still couldn't see out of both eyes at once, and I still couldn't think in a straight line or remember very well from one hour to the next things that were happening each day.  I was completely manic on decadron, so I would be up for 20 hours straight, talking and emoting all over the place.  I was completely unfit to manage the slightest aspect of my own care.  I could toilet myself and feed myself, and when we both got a stomach virus the day after my diagnosis (because things never go wrong one at a time), I knew to throw up in a bucket, but anything more complicated than the strictly immediate and biological was well out of my grasp.

My true love dropped out of this semester at Harvard Extension to take care of me.  He will not be getting his course fees back, and will probably have to repeat the whole year.  He did it before I'd even left the hospital that diagnosed me.

After surgery, as a direct, natural, and expected consequence of surgery, there was swelling in the brain again, so I was again thrown into temporary illiteracy.  There was no guarantee that it would be temporary, and until the swelling went down, we would not know for sure.  So my true love continued to organize my care.  He also wrote hilarious status notes to all my friends and family.  This is what he wrote after my surgery:

Subject:  Post-op news

Like how I'm picking up the hospital lingo? Post-op?  Wait, maybe I learned that watching M*A*S*H, or ER back when Juliana Marguilies' character was still dating George Clooney's.  Speaking of which, anyone seen  Laura Innes' cast picture? Yumm.  In any event, the more I hang out at hospitals the more I am convinced they need me.  I mean, I've already had a semester of undergraduate neurobiology, why not?  Oh, wait, you are probably reading this thinking  you'd hear news about Sara.  <sigh> Fine, but someday I'll have my own friends and they'll be cool.

Sara went in for surgery later than we originally told you.  Apparently they schedule a lot of operations to start at 7AM, but that's just to keep the computer system from suffering under the stress of it's own cognitive dissonance, unable to distinguish between it's program and reality.  But, I digress again.  Sara really went in at 9:30, with the operation itself not starting until around 12:30.

Surgery proper took almost exactly 3 hours.  Sara had a great experience with her anesthesiologist, enough so to make me just a little jealous.  Oh, right.  Sara.  Anyway, according to her neurosurgeon, Sara's tumor came out like a muffin from a teflon pan [my words, not his, but since most on this list are bakers, not surgeons, I'm translating, e-mail me for the power point slides].  The tumor was only a little sticky, and no infiltration into the brain proper.   The small part that stuck to the dura mater (that's the hard outer protective layer for those of you new to brain surgery) he "coagulated" which I believe means "froze like a 10 year old caught with a lighter."   The location and ease of removal makes the good doctor less sure the tomor is actually melanoma, which is probably a good thing and explains why Sara is still alive, and only showed one such mass in her brain. 

L. (the sibling present) was in to see her soon after she was wheeled into recovery.  I got there late, but I'm not going to tell you that story.  Anyway, she was alert, verbal, and verbose.  I could barely see the bandage on her head, but she's got ice packs, oxygen and IV's going.  We chatted for about 5 minutes when she started to fade away.  We said our good nights, and promised to return with her toiletries, toys and anything else she needs tomorrow morning.

More as time allows.

{my true love}
Medical Information Specialist

He wrote this one when I was released from the hospital:

Subject:  The Saturday Evening Brain (Late Edition)

As I thought might happen, Sara has charmed, manipulated and lied her way out of the hospital a day early.  Her charms allowed her to convince the inexperienced, if not naive, young resident at the hospital that there was nothing wrong with her in the first place, she had just gone in to submit her resume, and some how ended up in a hospital gown.  Perhaps if the good surgeon had been so kind as to make a more visible scar, his assistant would not have been so easily fooled, but with such a small incision, anyone might mistake Sara for a visitor.  Well, what's done is done.  Sara has been sprung, and is at home, watching Harry Potter, making scones and trying to convince me that there was nothing with her int he first place also.  A ridiculous argument since I've wanted to have her committed for years.  Her sister L., who is apparently so naive she should have gone to medical school too, brough her home, and is now awaiting a flight home to California, where she will hopefully not be as easily fooled by her mate who seems to have the flu and poison oak, and her dog, which seems to have spread it around the house.

Bon Voyage, L., and Godspeed.

{My True Love}

Many people wrote me good wishes.  I was, of course, unable to read them, but he read me all of them and sent me copies in the expectation that someday I would be able to read them myself and reply to them.  (If I haven't replied to one of yours, please forgive me; I'm quite behind.)  He sent another reassuring note to my friends about my silence:

Subject:  Staples, Magnest and Sara Oh My!

Sara has been home for over a day now, her meds are making her so jittery that a dirty dish has a half life of about 15 minutes before it finds itself scrubbed clean.  The same can be said for Sara, who's done a tremendous job of returning to her normal daily routine, though since she is starting it at 2 AM now, I'm not sure she should be given too much credit.  I mean, we could all do more if we only slept 4 hours a day too!  She blames the drugs, but we know that what's making her hyper are my attempts to subliminally hypnotize Sara into hosting a liberal talk radio show/podcast  with me is what's really making her nervous.

Lastly, Sara would like you to know she's doing well, but her biggest annoyance is her inability to read as well as she used to, so for the time being, don't expect her to read or write very much.  Also, if I sell your names, phone numbers and e-mail addresses to Masserati claiming you are all well heeled e-commerce executives looking for something more exciting to drive, it's not her fault.

And then, finally, when I was almost myself again, there was this one:

Subject:  Sara's Recovery, and my personal liberal rant

Sara has been back home since last Saturday, and things are returning more or less to normal.  The dishes are starting to stack up normally, and she's even gone grocery shopping.  Now, for those who don't know, Sara is a "lister."  That is, she likes to make lists, and share them with people.  By people I mean me, and by sharing I mean she told me everything she was going to buy at some point over the last week.  And I politely nodded and said "sure dear, that's fine", hoping it wasn't all some elaborate trap, that sometime later she wouldn't break out in a fit of anger and hurt becuase I didn't remember some detail which seemed so important to her.

However it never occurred to me the sheer VOLUME of groceries Sara would bring back into the house.  She got D. to take her shopping, and about six hours after they left, she comes back with enough groceries to feed a small Ethiopian village (including pets) for a month packed into D.'s little four door.   I'm sure if D. has suspension problems over the  next month she'll be asking us to pay for them.   I'll just remind her now that Sara's debts are her own.

So, my point to all of this is that Sara really is doing fine, and returning to the routine she wanted to have for months with gusto.  Her online shop is back up, her studio is getting warmed up, and her dependence on Decadron and it's insane apetite inducing effects are also gone.  I suspect she was still under it's effects somewhat when she went shopping though.

Also, in case any of you are finding the current Democratic presidential candidates too conservative for you to actually get excited over, you might want to check out my latest liberal rant, here at:  http://entropyparadise.blogspot.com

Those of you who find McCain too liberal, should skip reading my post and go ahead and send a copy to the Department of Homeland Security.  Just save yourself the heart attack now please.  Oh, unless you are a True Conservative, in which case you're already appalled at the deficit spending, and the Iraq war and need a way to incite the quiet conservatives to take back their party.  Neo-Cons need not apply.

Do you see why I love this man?  Even if he weren't completely trustworthy, he's freakin' hilarious, and brilliant (and a liberal!  so dreamy!), and always always himself, not trying to be someone he thinks you'll like better or admire more (unless he's messing with you, and by the way, he's not above messing with you).  He's not an icon, he's a guy, a guy who really loves me, for no good reason I can identify.  But he's also completely trustworthy.  And he's really proved that this month.

When I was being discharged from the hospital, the nurse explained to my sister my complicated drug schedule, which involved weaning me off the decadron so as not to shock my system with its sudden withdrawal, and then when we got home my sister explained it to my true love.  I was right there each time and couldn't follow or remember any of it at all, and this distressed me greatly.  I didn't know which parts of my condition that day would be temporary, and didn't even know how long it would be before I found out.

However, my true love was on top of it, as deep down inside I knew he would be.  I had to take drugs at odd times, every six hours, then every eight, then every twelve.  Even though he was very, very tired himself, at first, when I couldn't read or remember anything reliably, he would either stay up with me until it was time to take a pill, or he would set his alarm and get up to make sure I took it, sometimes having to wake me up.  As I got a little better, he began leaving the drugs for me on the kitchen counter.

You see what he did?  He gave me a glass for the water, and in it he put a little Ziploc baggie with the pill(s) and an index card on which he'd printed with black Sharpie marker what I was taking, how much, and what time I needed to take it.  Because of the very drug I was taking most, I was in the kitchen a lot, eating and cooking and washing dishes.  Because it was almost a week before I could read really well, and because I was getting no sleep to speak of, this was pretty much all I could do.  So I would see these glasses several times before it was time for me to ingest the contents.

Every time I saw them, my heart about burst with love.  Because every single one of these was a love letter, a caring act of someone who deserves my trust.  He'd gone to the trouble to work out what I needed, even calling my doctors to confirm that what he'd been told was correct; when the steroids were practically poisoning me, he worked out an accelerated wean; and he knew that even if I couldn't remember or understand from one minute to the next, being who I am I would want to know what I was taking and how much.  And he made sure I could see when to take it, in big, clear, dark print, facing forward, and that I would see that every time I saw the glass, and that would help me remember to do it so my recovery wouldn't be complicated or delayed.

When I was better and again able to take charge of my own care, he gave me this notebook.

Inside this notebook is every single document generated around my brain tumor to date, even prescription packets.

There are even printed pages from my true love going out onto the internet to research various things, including the drugs I was prescribed.

I put it to you, dear readers:  Has any woman ever been better represented?

Usually in so-called "romantic" love -- though if it lasts as long as it's supposed to, what we commonly think of as "romance" ends up having little to do with it -- when we talk about trust, we think of things like trusting someone not to hurt us, not to cheat on us, not to spend the household money on drink, etc.  At least, these are the things that pop into my head first.  This, though, this ability to entrust yourself to another person and just know that s/he will do the right thing -- the right thing for you -- and more, and do it lovingly, willingly, and without hesitation except to be sure it really is the right thing, this is the kind of trust that only comes with true love, and even then not everyone has it because you just can't choose whom you will fall in love with.

How grateful am I, then, to have my true love, someone I could hand over my life to and not have the slightest fear that he would do anything but help and protect me?  Many people have no one like this in their lives, and I did not have anyone like this in my life for many, many years.  And again, like free brain surgery, it's not like I've done anything in particular to deserve it.  I was just in the right place at the right time.

No he doesn't have any brothers or sisters, and alas, the tiny bookstore/café where we met has long been out of business.  And no, I will not share, except with the cat, who had the good sense to pick him out of everyone in the neighborhood to be his savior and protector, too.

That's a smart kitty.

And we are both extremely lucky to have found someone we can both love and trust completely.

Your Tax Dollars At Work!

Love Thursday (which has been resurrected by Shutter Sister; thank you, SS!) returns to Moving Right Along this week with a bang.  A huge ringing bang.

Look at the gift I have just been given.  Well, maybe don't look if you get icked out by such things.  On the other hand, if you enjoy looking at such things, click to enlarge by all means!  It's a little blurry, though.  It's hard to take pictures of the back of your own head even under the most ordinary circumstances.

Isn't it beautiful?  It's one of the most beautiful gifts I have ever been given.  Actually, it's a lot of gifts, from a lot of people, and it's going to take me quite some time to list them all out for you.  It may take me years.  For today, though, in case the beauty is not immediately obvious to you, let me just begin to explain.

One week ago today, I was given free brain surgery with all the trimmings by a genuinely world-class team of kind and compassionate -- and highly specialized -- neurosurgical experts, courtesy of the Commonwealth of Massachusetts.  I had come to the emergency room the week before that highly altered and with a two-month-old headache that just wouldn't quit.  Turns out I had a brain tumor the size of a golf ball.

Miraculous.   I just showed up needing this insane amount of quite expensive, complicated help, and you gave it to me, freely and graciously, with exactly the same level of service and compassion I would have gotten had I been the child of a foreign potentate brought in on a private jet.  (And I know this for a fact because I have worked in local hospitals and personally served children of foreign potentates.  None received better care or more deference than I have enjoyed in the last three weeks.)

So.  Thank you, Massachusetts.  Thanks to you and your subsidized health care for the impecunious within our borders, I can read and write today.  This is especially impressive when you realize that I could do neither one a little over two weeks ago.

Like most people, I have done nothing particular to deserve your help.  Like most people, I have also done nothing to deserve a brain tumor.  This stuff just happens to people, all kinds of people, all the time.

Like many people, I could never afford insurance to cover it.  Never.  Even with the best private insurance I ever had, the amounts not covered would have devastated me financially.  And the confusing paperwork and conflicting stories from the insurance company, plus the collection calls from all the service providers' automatically-summoned-after-X-number-of-days bill collectors would have started within weeks of my surgery.  Even with every responsible measure of a responsible person in place to mitigate the fallout in just such an event, this is how it usually goes for many many people, maybe even most in this country, when something this big just happens to them through no fault of their own.

Many of us have long been arguing that helping each other is exactly what our collective resources as humans are for.  Helping each other.  Not killing each other or trying to quantify each other's monetary value.  Thank you so much, Massachusetts, for being part of this country that agrees.

So how 'bout it, rest of America?

So I'll bet you didn't realize this, but the whole argument about socialized medicine?  It boils down to love.  Do you love America?  Great.  Now do you love what America is made of, Americans?  Do you really?  Well, how much?

Do we love this country and each other enough to figure out a way for every single person in America to have what has just been given to me?  Or are we too busy judging and measuring and lying to each other about what things really cost to make this kind of possibility a reality for every single person?

Every single person deserves this level of help and service.  Every single one.  I only got it because of luck, finding the bad thing at the right time in the right place with an amazing surgeon and his team just happening to be available to me right at this moment, strictly the luck of the draw.

Oh, and because I live in Massachusetts.

In Massachusetts, we are often rude and cold in demeanor, careless of the environment, and even atrocious drivers.  You know what else we do, though?  Bottom line, we love one another enough individually and conceptually to put our money where our politics, philosophies, and religions are and really take care of each other, or at least to try.  Yes, if you live somewhere else in the country, it is very likely that we pay higher taxes than you.  Nobody likes paying taxes.  But nobody here likes people to die of treatable and preventable medical conditions.*

As one who's been on the receiving end in such a big way this time, I cannot express my gratitude.  Thank you so much, Massachusetts, for the amazing, beautiful gift.

I love you, too.

__________
* I don't pay taxes myself right now, personally, because I don't make enough money at the moment, but I have, too, for many many years, and barring catastrophe will again -- because I'm probably going to live.  Because my fellow citizens of the Commonwealth paid for it.  Even without the love, can you see purely economically how much better this works than just telling people to "sink or swim," "you get what you earn," and "those are the breaks"?  Do you see?  Even if you can't feel the love, surely you can see the pragmatism?  More healthy citizens = bigger tax base.  So simple.

Dare I say it seems like a no-brainer?