Babies

I've found that it's something women don't talk about.  There isn't really even vocabulary for it, but this is the story of how a nest of baby robins turned me into a lunatic.

Under my deck is a nest full of baby robins -- directly over the path to my dog yard.  Mama robin and I came to an understanding early on about how I wasn't going to do anything threatening, and if she was busy with her babies, I would wait to walk under them until she was finished.  I started worrying about them fledging into a yard full of dogs, though.  Could I rig some kind of net to catch them?  Could I train the dogs to alert to falling baby birds?  Would I be able to build a slide underneath them without them noticing that would gently roll them out of the nest, across the yard and land them safely on the other side?  The devastating image of Midge running around with baby bunny feet sticking out of her mouth is still notably fresh in my mind...  But this all seemed fairly normal to me.

However, this weekend, my husband and I are pulling up the fencing to regrade the backyard.  He started using his tractor by the deck, and I turned into a nutter -- refusing to let him stress out the baby birds.  They're JUST BABIES.  And going on a tirade about it being a federal offense to disturb a nest.  And in the midst of this, I realized that I had turned into a loon. And it was about babies.

I'm too sick to have a baby.

I'm too sick to have a baby.  It's such a hard thing to say, and a harder thing to wrap my heart around. But it's true.  I can't carry a baby.  We tried for a little while, and I had early term miscarriages.  My body hardly lets me get out of bed usually, so this shouldn't have come as a surprise.  And I also can't care for a baby.  I can hardly care for myself, and that's not how I want to raise a baby.  I know this.  I know it logically, but it feels like someone took a corkscrew to my soul.

And I don't talk about it.

I talk to my sister about everything, but I see how much it hurts her when we talk about it. When she was pregnant, it was so hard sometimes to be around her.  I'd take such joy in her joy, and it would bring me such pain in equal measure.

When you can't have babies, sometimes everywhere you look there are only pregnant women.  It's like the universe is tormenting you.  Crack whores can have babies, but I can't.

And some days I forget about it all together, but those are usually the days that someone asks me when I'm going to start having kids.  Let's get one thing straight.  You should NEVER ask someone that.  Because if you have to ask me the question, you don't know me well enough to get an honest answer, so what is the point?

I've tried to stuff things in the hole this has left -- puppies, movies, crafts, hostas -- but it turns out that there is no bottom.  So I just do my best to live with it.  But every once in a while, I lock myself in the bathroom and cry.

And I know I'm not alone.

My Motherboard is Fried

Yup.  My brain is frying itself.  Again.

When I consider this, in the light of day, I think about the book, My Lobotomy.  It really is a "must read", even if your brain is doing just fine.  And the moral that I'm taking away from the memoir today is that he wrote a book, even after someone jammed ice picks into his brainses.  So this is probably no big deal.  But my brain is frying itself.

It's happened rarely before, but last night my brain sent a jolt of lightning through itself which caused me searing pain, tingling (like my big sister made me grab the electric fence again kind of tingling), a massive headache (which I still have today) and utter exhaustion.  So this morning, I decide to be a responsible adult, and call the doctor's office.

Receptionist: Your doctor is not in until tomorrow.  Can I leave her a message?

Me: Yup.  My brain is trying to kill me.

Rec.: [Pause]  Is it talking to you?

Me: No.  Yes.  I don't know.  How do you tell?  Aren't you your own brain?

Rec.: I suppose so.  Are you trying to tell me that you're trying to kill yourself?

Me: I guess so then.  Oh!  Well, no.  Not like that.

Rec.: Then like what?

Me: Well, I wouldn't slit my wrists, if that's what you mean?

Rec.: Where are you?

Me: I'm home.

Rec.: Hang on.  I'm going to send someone to help you.

Me: Do you have a neurologist that makes house calls?  This is so confusing.

[Muttering and shuffling on the other end of the line]

[The PA comes on]

PA: Alessandra?

Me: Yup.

PA: Quit freaking out the new girl.

Me: What?!?  She's freaking me out!!!

PA: What's wrong?

Me: My brain's electrocuting me.

PA: Oh, it's probably just partial simple seizures.

Me: WHAT?!?  Wait.  You're not a doctor.

PA: Now you know what the receptionist feels like.

Me: Fair enough.

PA: But seriously, it could be partial simple seizures.

Me: Well, that doesn't sound good.

PA: Yeah.  We should probably check that out.

After I thought about it some more, I realized that I think about being dead at least twice by lunch time.  Not really killing myself, but just being dead.  It would be easier.  I wouldn't be in pain.  I'd insist on a pretty bitchin' funeral.  Have I mentioned that I wouldn't be in pain?  And theoretically, it seems reasonable.  Then I start thinking about other things.  Like breezes.  I'd miss breezes.  And sunshine.  And flowers.  And autumn.  And christmas.  And my ridiculous family.  And my nephew.  But I don't even remember what it feels like to be pain free.  Or even pain less.  But I'd never get to eat chocolate again.  Or squish sand in my toes.  Or hug puppies.  Plus Marge would poop on the floor for all eternity, if I left her.  She'd probably even ghost poop on stuff.  How do you even clean up ghost poop?  Maybe ghost poop is just a whiff of poop air that you can't find the source of (I hate it when that happens).  Plus, I think it's really rude when people leave their bodies lying around for people that they care about to find.  I don't think there is anyone I could wish that on.  Lice.  I could wish lice on a few people.  Oh.  If I was dead, I couldn't wish lice on anyone.  And that would be a shame.  Also sledding.  If you ghost sled, it takes away the death defying element of the whole endeavor that makes it worthwhile.

Anyway, you see my point.

And as my Dad would say, "You're a weird kid".  And I'm all yours.  You're welcome.

Letting Your Light Splatter Around

I have always believed in letting your little light shine.  

In my mind, this light it always a gentle glow.  It's symetrical and easy and beautiful.

Here is the shape of my life in my heart:

I spend a career acting in Shakespeare on Broadway, meanwhile I become a UN Goodwill Ambassador focusing on education for girls and women and ending childhood hunger.  Obviously after that I get elected to the Senate where I make real and sustainable change for the good of people, while donating my pay to charities.

I get that there are several issues with that.

First, Shakespeare on Broadway?!?  HA!

Second, Senators making real and sustainable change?!?  Ho ho!

Third, and probably least pertinent is my inability to routinely get out of bed before noon.

I have always been someone who won't do something, if I can't do it perfectly.

P.E.R.F.E.C.T.L.Y.

I won't do community theatre.  I've never been bowling.  I don't draw.  You get the picture.  

If it's not going to happen with a graceful, beautiful glow, I'm not doing it.

And you can't make me.

However, you may have noticed that some events have come to pass that have taken me from this:

to this:

Which brings us to quilting.

So, here's the story:

The brilliant woman who gives me massages (Laurie Swenson, Soothing Elements, Putnam, CT) has known me for quite some time now.  She does the most remarkable energy work, and is most of the reason that I can occasionally walk and talk.  

About a month ago, I had gone to a friend's wedding where there were copious amounts of handmade quilts given as wedding presents, and I left with a serious case of quilt envy.  Shortly after that, I had my usual appointment with Laurie (who is also a big quilter).  We had a conversation that went something like this:

Me: All of her quilts were to-die-for!

Laurie: Well, what have you been doing lately?

Me: I can't tell you.

Laurie: I'm pretty sure that means you should.

Me: It's too embarrassing.

Laurie: I won't judge you.

Me: Okay.  I'm doing jigsaw puzzles.

Laurie: That's it?

Me: No, I'm doing jigsaw puzzles on my iPad.

Laurie: (trying to hide her laughter) So that's it?

Me: No, I'm doing jigsaw puzzles on my iPad with all of the pieces already right side up, so I can feel like I'm accomplishing something.

Laurie: (crying, because she's laughing so hard) Oh, that's sad.

Me: Hey!

Laurie: No seriously, even the nursing home ladies would make fun of you!

Me: I know.

Laurie: You should really try quilting instead.  It's kind of like jigsaw, but you actually have something useful when you're done, AND people won't make so much fun of you.

Me: How do you know people are making fun of me?

Laurie: What did Sosanna say when you told her?

Me: Point taken.  But I can't even draw a straight line with a ruler.

Laurie: iPad puzzles.

Me: Okay.  I'll try.

As usual, I dive right in to the quilting experience.  And I've made some revelations:

There are more people quilting that you realize.

Most of them want to help you, because they all love quilting.

Laurie was right, you can't stop buying new and adorable fabric.

So, here's the great thing.  I only have to stitch straight for maybe 6 inches at a time.  Also, I can just stitch 6 inches of something, and still have accomplished something.  And my seams definitely don't line up, but I've also discovered that doesn't REALLY matter.  Well, unless you ask my mom (you know what I mean, for those of you who know her), but I've decided that I just don't ask her, and even she seems pleasantly surprised by what I have accomplished so far.  Also, I'm sticking to kid's quilts, because, let's face it, they're not that critical!

And so it was sitting at my sewing machine last night that I had this realization: Letting your light shine doesn't necessarily mean doing what you're great at, or polishing and perfecting something to offer to the world.  Letting your light shine is offering the universe all of yourself -- just do you, as the kids say.  And that light can be messy and splotchy and dim and overwhelming and colorful.  You are the only person who has your specific light.  Don't hide it, because you think it might not be good enough.  Make all your seams crooked, and all your hugs big.

And then take a nap.

I Am Not Surviving

It turns out that I never got smarter than I was my senior year of high school.  Sure, I had more years of education - more facts shoved in my brain - but it turns out that the smartest I ever got was in high school.

My school's yearbook had senior pages designed by all of the graduates that were full of hopeful quotes, inside jokes and song lyrics.  On my page, I wrote the quote,

"Make sure when you find yourself, you are someone you want to meet".

This has become more of a challenge with each obstacle that has come my way.  Choose to react positively.  Choose to be happy.  Choose a good life.  Choose to give yourself grace.  Choose...

The problem is that I woke up, and I don't like me today.  I feel unplugged, useless, absent, unheard, exhausted, in pain and hopeless.  I have been poked, prodded, bled, scanned, discussed and summarized.  I have not been cured, relieved, soothed or fixed.  And it is exhausting.

"The only known patient to survived septicemia caused by Rhodococcus Equi" is the title of my paper.  But I haven't survived.  I don't know who I am now, but I'm certainly not who I was.  I haven't survived.  I'm as much of a casualty as the rest of the dead mammals.

My nephew, who is four, came to visit me last week.  We had a great time, and as I was packing him up in the car to leave, he said,
"Auntie, it's really sad that you don't have your own kid to stay here with you all the time."
"It's okay, I have you."
"But Auntie, what do you do while I'm not here?"
"Oh, I nap."
What was so painful, was not its sharp truth, but knowing that a four year old sees me more clearly than anyone else.

And yes, I've reached out to my clan of medical professionals for the help that I need.
But I felt like this part needed saying too.

For all the people out there feeling like this: you are not alone.  We are not alone.
And for all the people out there not feeling like this: Listen.  Be present.  If someone reaches out to you, make sure you are worthy of their trust.

Oh, and sorry, some days there just aren't any funny twists.

Part 2: Fixing a Broken Plate with Duct Tape

It seems I haven't been willing to write in a while...  So let's catch up....

We left the story at a fever of unknown origin and being admitted to the hospital.  That was a year ago. It turns out that I was septic with an infection of Rhodococcus Equi.  It looks like this:

Now for a little science (very little):  R. Equi, since it's discovery in the 70's has caused around 200 infections in humans.  It is primarily a bacteria that infects foals, and causes bacterial pneumonia.  In humans, it has primarily infected people who are dying from HIV or cancer.  It so rarely infects "immunocompetent" humans, that my nurse came into my room while a group of interns were standing around staring at me while I slept, and said very loudly, "Yes.  It's like seeing a unicorn.  Get out of here and let her sleep!"  In all of the scholarly writings, there are 19 cases of immunocompetent people being infected with R. Equi.  I'll give you the long and the short of it -- there are a few people with pneumonia, and a couple of people with infected wounds, and 1 other person that had bacteremia.  Of all 19 of these people, only 4 survived, and the only other person with bacteremia died.  In case you're wondering, that's a 2% survival rate overall, and a 20% survival rate for immunocompetent patients.  Not, what you'd call, awesome.

I spent 16 days in the hospital.  The longest 16 days of my life.  I had a big glob (so science-y) of Rhodococcus Equi on my heart -- something which could only be seen on a transesophagael echocardiogram.  In case you're wondering what that is, they put you kind of out, and shove a fairly gigantic probe down your throat to look at your heart from the inside of yourself.  Not recommended -- waking up in the middle of the experience.  On the plus side, it was a really funny story.  Then my liver went insane.  My doctors went insane.  I went insane.  There's really no good way to describe the experience.  Except to say this: I lived.  And since it happened right before Christmas, I like to think that I am a Christmas Miracle.

So, then what?  I had 2 months of IV Vancomycin at the highest dose the Infectious Disease specialists had ever prescribed, plus an additional antibiotic for good measure (R. Equi requires 2 different classes of antibiotics to kill it).  And then I was declared cured.

The funny thing about being cured, sometimes, is that you realize it isn't the same as being "fixed".  I have never recovered my stamina or energy.  I am in constant, grinding pain.  I can't remember things.  I am exhausted in a way that feels like I'm drowning.  Most days, I consider it an accomplishment to be out of bed before noon (having my teeth brushed is extra credit).  If I do something big (I call it my big doin's), it'll take me a couple of days in bed to recover.  There is no mercy.  There is no cheating.  There is no way around it.  And most days I pretend that it's fine.  I've come up with an amazing amount of platitudes.  I do honestly appreciate the fact that I didn't die.  I found joy.  I got married to an amazing person.  I have pressed on.  But the truth is that sometimes, when I'm by myself, it brings me to my knees.  I blame myself for being lazy.  I judge myself for not being amazing or interesting or fun. I am so very hard on myself, and I take anything that anyone says around my lack of energy so personally.

I keep hoping for some kind of amazing self-realization or divine meaning.  I sent away my dogs.  A subsequent surgery damaged my vocal chords, and I can't really sing anymore.  I'm too tired to visit with my friends ordinarily.  I'm too tired to work.  I can't possibly be that fun to be around.  I know I usually have a funny take on my own life, and that's probably why you read this, but the truth is that I'm not feeling funny right now.  This just feels hard.  And unfair.  I feel like my life ran away without me.  And having seen about twelve thousand specialists, I feel like medicine left me behind.

Maybe I'll be in a better mood soon, and I'll tell you all about why you should be nice to nurses, because if they want to, they can strand you on your poop chair and leave you there.  Also, when you're really nice to nurses, they get you a private room, so you don't have to be in a room with a woman constantly stranded on her poop chair.  Yup.  It's like that.  Always be nice to nurses...  Always.

As it is, I'm just going to curl up and take a nap.

How My True Nature as a Unicorn Was Revealed

This is Part One of the Story.
There is a fair amount of vomiting, so read at your own peril.


I got sick a couple of days before Thanksgiving.  I figured it was just the flu -- fever of 102, puking my guts out -- you know, the usual.  After a day or so, I started to feel better, and ridiculous as I am, I thought that was the end of it.

A week went by.

And then my nurse came to do the weekly dressing change on my PICC line.

This is my PICC line.  

It is a 36cm long tube that goes through my veins, right to my heart.

As soon as she left, I hopped in my car and started driving to a friend's house to go grocery shopping.  You know, looking at that photo, I really need Michelle Obama to come do something about my arms.  Anyway, by the time I was at my friend's house, I finally understood what "wracked with chills" meant.  I was shaking so hard that I could hardly walk, and my teeth were chattering so much I couldn't really talk. I decided to go to the hospital.  I thought my PICC line must have been infected.  Even I couldn't get the flu two weeks in a row, right?

Well, I turned around and drove myself to the ER (there's a really gross story I could insert here about the need for Stop and Shop to make sturdier bags, but there are some things that should just remain private).  I showed up, starting to burn up with a fever, covered in my own vomit and mildly incoherent (in retrospect, I should have gotten a ride, I KNOW...).  I was triaged and promptly put in a wheelchair, swaddled in hot blankets, and rather inexplicably, wheeled out to the waiting room.

There was a three hundred and forty seven year old man at the greeter's desk.  I'm pretty sure it's where the Walmart greeters retire to, because they get to sit down the whole time.  The rest of the waiting room was completely empty (as, in truth, was the ER).  Just me and the greeter, who was rapidly turning into an old oak tree.  And the triage nurse parked me directly behind him.

A few minutes or a lifetime pass....

Now I need some puking receptacle.  Badly.  I try to get up, but I'm madly tangled in all of the blankets.  I try wheeling a little, but the blankets are now twisted around the spokes of the wheel chair.  So, I try to get the greeter's attention.  "Sir?".... "SIR?".... "EXCUSE MEEEEE".... nothing.  I should have made a note of his gigantic hearing aids before this happened...  But sometimes Nature prevails.  Not wanting to be prevailing on myself anymore than I already had, I looked around desperately for help.  And found it.  In the tiny sign that said RESTROOM.  I flung myself out of the wheelchair on to the floor, drug myself around the corner into the restroom -- thinking the whole time about all of the exposés about the nastiness found on the bottom of purses -- and did some intense praying to the god of all things round and porcelain.  And pulled the emergency rip cord.  It seemed like the thing to do.  And I lay on the floor of the hospital bathroom with the emergency alarm going off.

And no one came.

A few minutes or a lifetime pass...

And now there are crazed voices at the door (that I of course locked, because I'm not that kind of girl!), trying to get in, threatening to break it down, yelling at each other about why someone who was clearly in distress was left to wait alone in the waiting room.  I reached up, pulled down the door handle, we all looked at each other, and I don't remember anything much that happened after that.

It must have been hours later.

I was in a private room in the ER, and the doctor came running in, all out of breath, looked at me and said, "I'm going to remove your PICC line", but in this way where she could have been saying, "I must away from this castle to slay the mighty mighty dragon that plagues us, and is now spitting fire on all of our peasant folk".  In short, she was bravely mildly hysterical.

It's a tube, so the coming out of it is much easier than the going in.  You just pull the adhesive stat lock (white thing with the arrows on it in the picture) off of my arm, and then continuously pull the PICC line out.  Pretty simple.  And mostly painless.  It just feels weird.  I can feel where it is in my body as it's being pulled out.

So, she screams out the door for a nurse to come with the sterile kit (the end of the PICC line is cut off and sent away to be cultured in case some bacterica or something else is growing on it).  And with a wild look in her eye, she squares her feet with her body, grabs the PICC line, and RIPS it out of my body.  I have this image of her holding the PICC line over her head, like she had just slain the giant serpent, and I would now be saved.

A few minutes or a lifetime pass...

Some stranger is in my room telling me that he's going to commit me (in retrospect, I'm pretty sure he said admit, but that isn't how I remember it).  And I started screaming, "NOOOOOOOOOOOOO".

I have no idea what happened next.

And then I was in a room upstairs in the actual hospital.  The admitting nurse said I had an FUO, like I was supposed to know what that means.  A fever of unknown origin.

And so it began....

Pot brownies, Philosophy, and Pagan Miracles

*Side note: I'm eating a sausage roll as I write this.  And I'm filled with glee.
**Side side note: My heaven is full of warm sausage rolls.  I just know it.

I left off so long ago, that I can't remember where we were, so I'm just going pick somewhere and dive in. 

I had an appointment last month with Dr. R. that left me meandering aimlessly around the Upper West side of Manhattan.  Lost.  I ended up sitting on a park bench outside the Natural History Museum, drinking a cup of tea, and talking to myself (in other words: I fit right in).  I just kept saying over and over, "You're okay, Alessandra."

Why on earth am I admitting to this?

Well, I've already written it, so I might as well press on.  After all, I don't think you'll find me crazier now than at any other point. [That last sentence just made me snort out loud.]

So, here's what brought me to a hobo level of insanity (no offense to the hobos out there): Dr. R. doesn't know what to do, and he wants me to go see another doctor.  Admittedly, it's the doctor that he would go to see, if he had Lyme.  The problem is that at this point, we have beaten the bugs into their dormant state (yay!), so by all intents and purposes, I should be feeling something resembling W.E.L.L., but I don't, and ineviatbly, we get to this point, and then it all starts unravelling, and we quickly have to resort to IV antibiotics again.  So, this new doctor (hereforeto referred to as Dr. B) specializes in Lyme, but does quite a bit of work with complementary medicine.  Dr. R. thinks that maybe he has something in his arsenal of weaponry that will help.

And I get it.  I really do.  But I did look at Dr. R. in despair and say, "You're not kicking me out, are you?"  Of course he's not.  How could I be so ridiculous?  But it left me feeling mildly abandoned.

Now, Dr. R gave me Dr. B's number.  His cell number.  A brilliant first impression, by the way.  Eventually I got an appointment (for the Monday of hurricane Sandy, so I had to reschedule) through his office, and was informed that the appointment fee for a first visit is $850 cash.

Eight hundred and fifty dollars.

I had already blown my doctor visit budget for the year.  And now I had to come up with an extra grand.

So, naturally I thought of having a bake sale.  Isn't that how everyone raises money?  I mean, who can say no to a BAKE SALE????  Patricia Folz.  That's who.

I called my mom, flushed with the thrill of my own brilliant idea, and she said to me, "Alessandra.  Exactly how many brownies would you have to sell in order to make even $300?".  Why does she have to be so reasonable all the time?  It's obnoxious.

So, I thought about it for a while, and decided that the only reasonable thing to do would be to make pot brownies, which would seriously improve my profit margin.  And then Jake pointed out that the Lyme Specialists in prison probably weren't that good.  Fine.  I see how it is.  Everyone just wants to SHOOT DOWN whatever brilliant idea I come up with.

I decided on dog cookies.  And a wonderful vendor friend of mine is selling them at her booth.  More profit than brownies, with none of the hassle of the po-po showing up.  (Is that how you spell po-po?)((That should tell you how much experience I have with both drugs and the police.))

Now, before my new found poverty showed up, I had booked a trip to Ireland with Jake.

Mom: Oh GAWD!  What are you going to do if you're sick???
Me: Be sick in Ireland.
Mom:  No, what if you're really REALLY sick???
Me: Be really really sick in Ireland.  Where at least people know how to make a good cup of tea.

Plus, I like to think that if I get horribly sick and die, then at least my friends will have a nice destination funeral to attend.  Morbid, but come on...

Where are we?

Oh right.  Ireland and philosophy and Pagan Miracles.

I've been thinking quite a bit about the word disease.  Dis-ease.  To be out of ease.  To be un-harmonized.  To be away from one's self.  Perhaps even, to be away?

I've always firmly held onto the belief that people have souls.  What they do with them, and where they go, is really none of my business, but I do know that everyone has one.  And as such, can a soul fracture?  Do you leave pieces of it behind, like a trail of crumbs, so that you can come back later and retrieve them all?  Is that how people get sick?  Too many pieces are missing?

I know what you're thinking.  And I swear I've never had a pot brownie, and I'm not eating one now.  These are just the things that I've been wondering.

So, I'm here in Ireland, where my mother's family is from -- quite immediately, too.  My mother is only second generation American.  And it is where I was christened, and I haven't been back since.  And I can't help but feel peculiarly at home here.  And in a way, more whole.

We flew into Shannon yesterday morning, and toured around a bit, and ended up in the afternoon going to see the Cliffs of Moher, and as night was falling on our way back to the B&B, we stopped at the Holy Well of St. Brigid.

Brigid was actually a pagan goddess that the catholics made into a saint, probably because, as no one would stop worshipping her, if you can't beat 'em, join 'em.  The long and the short of it is that this holy well (the holiest well in Ireland...I'm not sure how big a competition that is, though) reportedly has healing properties.  And I think we've established that I'll try just about anything.

The spring runs in a sort of cave in the side of a hill under a cemetary.  It's claustrophobic with talismans and statues and cards and trinkets and photos stuffed and hanging everywhere, and it's lit with a few candles.  And at the back of this tiny cave, there is a small square basin cut in the floor where the water pools, before flowing out.

In the dim light, all I could see was that the area of water that is reachable without plummeting into the depths of the unknown was noticably frothy.  Frothy.  And maybe with a foliage around the edges.  Enough to give me pause.  But I didn't come all the way to Ireland to be a wuss.  I knelt down, plunged my hand in the icy cold froth water, and drank it.  That's right.  I drank the holy-pagan-frothy water.  It tasted nutty.  And Jake said, "Oh my god!  Did you just drink that?!?".  Yes.  Yes I did.  And then the whole thing struck me funny.  I started giggling to myself.  And then I found myself back in better spirits.  And 24 hours later, I still find myself giggling when I think about it.  And maybe that is Brigid's secret.

Laughter, after all, has always been the best medicine.