El Dia de los Muertos

October 31, 2011

Dear Andrea,

When life gives you rotting bananas, make a banana cake.  From scratch.  Let the smell of sugar, flour, shortening, eggs all  baking in 8 inch round pans fill the corners of your house and wrap themselves around your heart.  When the cake has cooled on a wire rack set on your counter top, and the smell of baking becomes a memory, pull down a box of powdered sugar, a bottle of vanilla, take the real butter you set out on the counter earlier and make real butter cream frosting.  With real cream.  When the cake is frosted, stand back, admire your work.  Then take the beaters and the bowl, sit on the kitchen floor with your back against the cupboard door and lick the frosting from each beater blade.  Run your index finger along the inside of the glass bowl and suck the sweet taste of frosting from it.

It is Halloween.  The beginning of the holiday season.  Thanksgiving.  Christmas.  New Year’s Eve.  Your 30^th birthday.

Tonight I do not need a costume.  I am La Llorana, the Weeping Woman who is ageless and faceless.  Whose wailing can be heard on a rainy windy night.  She is the sound of grief—faceless, ageless.  She is a condemned woman.  And at same time she is a goddess bearing a message. 

I wrap my tongue around a single silver beater blade.   Let the frosting melt in my mouth.  Let the flavors linger before I lick the next one. 

Tomorrow I am going to begin “celebrating” a holiday that will be new to me.  El Dia de los Muertos.  The Day of the Dead.  An acknowledgement of your death and a celebration of your life—and of mine.

Tonight I will pick yellow marigolds from my garden and put them in a glass of water.  In the morning, I will set them on the dining table with photographs of you.  Your letterman jacket will drape across the head chair.  I will put out a glass of water and small bowl of salt. 

Tendrils of lavender incense will carry my thoughts to you.

When I come home from work tomorrow night, I will make a feast.  Plates full of your favorite foods.  Posole, home made flour tortillas, refried beans, chicken enchiladas.  You and I and Sadie will be the only guests at our candlelight dinner.  No one will eat.    

For dessert, home made banana cake with buttercream frosting.

Tonight it is Halloween and  I am La Llorana with a bowl of tiny Snickers, Twix, Peanut M&M’s for the constant parade of Trick or Treaters that ring the  doorbell.  I will admire their costumes, make small talk with their parents.   I will be with my friend Ami and her daughter Sahara.  Tonight I made a feast for the living.  We will laugh and eat at Ami’s table.

It is the beginning of the holiday season.

Tomorrow I will make offerings of water, earth, wind, fire.   The Day of the Dead.  I will turn off the phone, the computer, lock the front door, sit with my memories of you illuminated by candle light. 

In solitude my grief is raw, powerful.

I am La Llorana. 

I am a condemned woman.

I am a goddess of many things bearing a message searching for words.

Sitting on the kitchen floor licking frosting from the tip of my index finger.

                     Happy Halloween—Love You

                    Mom

  

Halloween Party

October 29, 2011

Hi Andrea,

The weather report said rain.  All day. 

But the sun is shining, reaching through my front window, stretching across the oriental carpets and maple floor, across the desk, ending at my keyboard.  My living room is filled with light.  It invites me out.  To play.

JR ESTATE SALES OCTOBER 29 & 30 - 10-4PM Dining room table/chairs, china cabinets, lamps, recliner sofa, lift chair, 5 twin beds, queen bed set, loveseat, end tables, computer desk, lots of glassware, kitchen misc, linens, upright freezer, tool chest, some tools, medical equipment & more.

Estate Sales.  You’d think I’d shy away from these.  Searching through the remnants of a life for some small treasure I can bring to mine.  They are the highlight of a Saturday.  Cup of coffee in hand, I look through kitchen ware in search of old  pitchers, flour sack hand towel, glass bowls.  I search for hand embroidered pillow cases, cloth napkins, table clothes.  I search the bookshelves for cookbooks and entertaining fiction.  Sometimes, in the closets, I will find a blouse my size, a coat, a scarf, a hat.  Often, I come away with nothing but a sense of whose pieces of a life I have just been privy too.  Those things they left behind.

Steve is upstairs showering now.  I hear him humming. 

Music.  The sound of his contentment.

Estate Sales.  I am never sure what I might find.  I just know I need it when I see it. 

Halloween is Monday. I have not been to a Halloween Party since I was seventeen years old.  Steve has not been to one in ages either.  He has some story about a Halloween Costume Party he went to in the 70’s that was pretty wild.  He and I have been agonizing for weeks about our costumes. 

Last night we went shopping.  Goodwill, the Halloween Store, Spencers, Claires, Wet Seal.  You would love what we came up with.  He is going to me my pimp.  I am going to be is “ho”. 

It is fun to be outrageous. 

At Wet Seal I saw a little black tube skirt in the window. 

“Let’s find a salesgirl.”  I told Steve , as we entered the store.

Just about that time a young Asian woman in her early twenties, Marcia, asked if she could help us.

“My girlfriend here is looking for a Halloween Costume.”  Steve volunteered.  I was just going to ask for the little black skirt on the mannequin in the window.  No explanation needed.

Marcia turned to me, all perky with her salesgirl smile.  “So,” she asked, punctuating the so, “what are you going to be.”

I wasn’t quite prepared to answer the question, and my brain would not work fast enough to make up a lie.  “A  ‘ho’” I answered. 

The truth was priceless.

When she recovered, she got excited.  “That is so cool.”

I am now the proud owner of a black piece of elastic with a zipper up the front that I hope will cover all my naughty parts.  Some black high heel boots, fish net stocking, big feathery earrings, enough bracelets for six women.  I be stylin’. 

You would be proud of me.

I am not the mother you left behind.

Death changes things. 

Redefines. 

Refines.

Why am I 56 years old and experiencing all of this as if it were the first time? Sometimes it is.  Sometimes it is the first time in a long time.

Marriage and motherhood took much of me.  Always, there was a fight to claim some small piece of me for myself.  Everyone, and everything had first dibs on my time.  When I took a second to ask what I wanted, someone else’s needs took precedence over my own.  I did not know how to set boundaries.   I am learning now.  The agony of saying no.

Guilt I already knew.

But not today.  And not tonight.  Tonight I am going to a Halloween party as a ‘ho’ with her pimp.  I will be carefree and outrageously slutty.  I will laugh and dance. 

I will claim that small piece for me.

Release.  Relinquish.  Redine.

              Love You Andie-Hope you like the photo.

              Mom 

Autumn

October 25, 2011

Autumn.

It has always been my favorite time of year.  The days grow shorter.  Trees are dazzlingly brilliant.  Nature prepares itself for hibernation.  Protection from the temperamental  whims of winter. 

Tonight I hurried home.  There is nothing like a walk when my breath makes ghosts that lead me forward.  It is a clear evening.  I want to see Mt. Rainier, to stand in awe of this mountain that is bigger than me.  That was here before I was born, and will be here after I die.  It is the false promise of permanence I crave. 

There is no promise that cannot be broken.

I love Wikipedia.  Mt. Rainier is a stratovolcano.  Dormant now, it could blow at any time.  It is considered one of the most dangerous volcanoes in the world. Because of its large amount of glacial ice,  this mountain that looks postcard picture perfect has the potential of producing massive lahars that would threaten the whole Puyallup Valley.  That would level everything in its path.

I tried to stop my medication.  The pills that keep me from crying in Starbucks because I have to wait for the barista to make my latte.  The pills that make it so I can sleep at night.  The pills that keep me from buzzing like high tension electrical wires. 

I never needed medication, for anything.  Until now.

Quitting made me crazy.  I am not ready yet.  I accept the fact I may never be.

Just as I am starting to accept the fact you will never be alive again. 

Tonight, back from my walk to Overlook Park, I sit here at my computer writing you this letter.  Stella is into something on the table.  I have a basket of shells I brought back from Whidbey Island.  They are there to remind of the beach and solitude.  I find comfort in feeling the ridges on the outer shells of the cockles contrasted by the cool smoothness of the inner shell.  Of feeling the roundness of the moon snails, big as apples, and reaching my index finger as far as I can into the inner chamber.  Of studying the different patterns and colors on the periwinkle shells.

When I turn around, Stella jumps off the table with a white cockle shell in her mouth.  She drops it on the hardwood floor, bats it till she scores a goal under the legs of the oak table.  I’ll pick the shell up later.  Put it back in the basket.  Stella will find another one she likes.  This is how she entertains herself.  Playing with the pinecones I bring back from the forest, shells I bring from the beach. 

I am gathering things for winter hibernation.  Pressing red, yellow, orange leaves.  I want to remember everything I have been trying to forget. 

Because that is what I need to do now.

Tonight I stood on a hill, looked out over the blue waters of Capital Lake, the dome of our state capital, the city of Olympia and the mountain. 

A mountain that rises quietly, majestically from the earth, fills the horizon, as magma forms and rises in places invisible to the eye.  When a critical volume of magma and gas accumulates, the obstacle (mass blockage) of the volcanic cone will be overcome, leading to a sudden explosive eruption.

My heart beats wildly.  There are things that I can learn from this.

Those things I learn, I can share.

Tomorrow night, I will have dinner with a friend.  It is something to look forward to.  For now, it is time to feed Stella her Fancy Feast—Sadie the leftover pork, potatoes and carrots in the fridge.  Fold a load of laundry, first burying my nose in nightgowns and t-shirts warm with the scent of lavender from Downy dryer sheets.  Then to bed with the latest copy of  O magazine and a cup of licorice spice tea.

And thoughts of you.

                      Love You Andie-

                      Mom

  

Forest Bathing

October 24, 2011

Hey—

Did you know there is something called forest bathing?  In Japan, it is called Shinrinyoku.  Business men don their suits and stand buck naked in the forest, breathing in the essential oils from surrounding trees. 

Yesterday, the sun was illuminating the big maple in Steve’s back yard. It was golden. 

“Hey, let’s but on our hiking shoes and go for a walk.”  Steve suggested.

“O.K.”  I was game.  “Where?  Maybe we should drive to the trails on Tiger Mountain.”

“Seems silly to get in the car to go for a walk.”  Steve answered.  “Let’s hike up the hill at the head of my driveway.”

“I’ve been up there a number of times.” I answered.  “Nothing up there but power lines.”

“There is DNR land up beyond the well house.  90 acres of it.  Lots of trails.”

The trek to the top involves a long, narrow road that leads to several houses.  I haven’t been exercising like I used to before you died.  I was embarrassed by how out of shape I have become.  Pride kept me from stopping to catch my breath, so when we reached the top, I was shaky.
 
As we crested the hill, we turned right, onto a gravel road.  Sadie was with us.  After we walked around the locked gate, I unclipped her from her leash, she looked at me, I told her “Go on ahead.”  Tail wagging, she led the way. 

“You’ve been holding out on me.”  I teased Steve.  “How come you never told me this was here?”

He just smiled.  Then took my hand as we walked in the autumn woods.  Silent.  Listening.
Enjoying this brief respite before the holidays and all the memories they will bring.

The gravel road ended at a well house.  From there, small foot trails branched off, like smaller streams that feed a river.  We climbed a berm and took the middle trail. 

Lush.  The only sounds the whisper of falling leaves, bird calls, and a squirrel who scolded us for coming into her backyard. 

“Listen to the echoes.”  Steve invited.

I did.  And then I made my own.  Whooping, laughing, I caught the echo of my heart opening.

I handed Steve Sadie’s leash.  I took off my t-shirt, handed it to him, then opened my arms to the trees, the ferns, the smell of leaves decomposing.  Felt a cool breeze wrap itself around me.
 
“I am walking with my shirt off until we hit the road again.” I told him as I moved ahead of him on the trail, arms open wide, then arms above my head.  I wanted to soak as much of this air into my skin as possible.  It felt like something magic.

Forest bathing.  Shinrinyoku.

A return to something primal inside of me.  I find a place I must return to.

A place I can draw strength from.

                                    Love you and miss you,
                                    Mom

Dancing Shoes

October 22, 2011

Red patent leather open toed 3 inch heels, a micro mini black skirt and a blonde wig (that is unless she is blond already—then she could just go with the heals and the micro mini).  Several things every woman should experience at least once in her life. 

Today, that would be my advice to you.

Took me 56 years to learn that. 

And at least 6 years before I wore those red patent leather shoes with the 3 inch black heels.  I put them on last night, the first time they have been on my feet since you sent them to me for my 50^th birthday.  The spring you got back the results from your Lyme disease titer.

I am going to dance tonight.  In my red heels, in my little black skirt and I’m going to be blonde.

If you had not died, I would not be here, sitting on the end of Steve’s bed, getting ready for a night on the town with him.  In these heels you bought me and I have never worn. 

And I’ve been thinking a lot, lately, about this letter that you wrote on MySpace in April 2009. 

…………………………………….

I saw a post on a Lyme support board that got to me... I realize that not everyone knows exactly how extensively Lyme disease has affected me, and I can't believe I'm going to just put out there for all to read what I've gone through, but maybe it'll help someone... Maybe it'll make a difference... Maybe the next time I'm down someone will recognize the signs, print this out and march me into the hospital... I don't know what will come of this... Maybe future employers will find it and choose not to hire me. Maybe my retirement will be effected. The fact of the matter is, it's too much to continue to hide from my friends.

Know that these feelings do not define me as a person on a daily basis, just as the disease I am plagued with does not define who I am... It is a constant battle that I fight trying to be who I want versus who Lyme has made me, but it's a battle I am determined to win. Those of you who know me, know I am way too strong to let something like this shape my life.

All that said - here you go (keep in mind this is the answer to a question about whether or not other patients have thought about suicide).

"I sure haven't been posting as often as I used to, but that's because there have been a myriad of changes in my life...

Lost loves, never ending hospitalizations, a swift downward spiral into self-destructive behavior...

I've been there. I think my first attempt was in June of 2006. My boyfriend at the time walked in on me at the kitchen table with a knife, an empty bottle of pills, and a half-eaten bean burrito. I learned then exactly how to manipulate the mental health professionals into believing that I was fine.

For years now, that's what I have done... I get really sick, begin to shut down, attempt self harm or suicide and wiggle my way out of situations. If I can't wiggle out right away, I offer to go in for evaluations voluntarily, knowing that at some point I'll find the weakest link and be able to manipulate my way out of the situation.

One mental health professional actually recognized what I was doing while I was inpatient, and still discharged me.

I don't lie anymore. When I'm having a Lyme fit, I get in my car with various bottles of pills and drive... I call select few who I think can help me - because I do recognize that the real me would never want to ruin such a precious life, no matter how terrible it may seem - and I tell them what I'm up to. Sometimes I tell them where I am, sometimes I don't.

When I hear a siren, my friends know that calls are cut short because I disconnect my cell phone battery and drive away again. I run until I'm so out of breath and broken down that I have no energy to harm myself. Then I ask for help.

It's happened so many times that I feel stupid at the end of every fit. I can never believe that I'm strong enough to keep myself from downing the bottle of pills on my passenger seat, but not strong enough to openly ask for help before loading up the car and leaving.

When my friends try to talk to me about what they could have done differently, I always tell them that I need to just be held down and hugged, but in all actuality, it'd be like trying to cram a shark into a goldfish tank because I'm always filled with so much rage.

This January was really rough. Bad news kept piling on top of me and I'd been drinking and partying way more than I should have been... My judgment was impaired and I tried to go to a friend for support, but no one is able to drop everything and focus on a single human being at the drop of a hat.

I drove off... Parked my car on the side of the road, and started popping pills. I kept track. I kept close track... I knew that if I took a certain amount of this or that I'd simply fall asleep and maybe things would get better when I woke up.

My friend turned me in to the local authorities, I was taken to the local hospital and manipulated everyone into believing that I was OK. I must have thought and talked about attempting suicide every day for a full week. I was surrounded by county sheriffs at one point - I think there were 4 cars total, and able to manipulate them into believing that I was mentally sound. I had a paramedic knock on my car window (after noticing the alcohol and pills) and I somehow managed to get out of going in.

It seems like suicidal tendencies increase when I'm put on any form of antidepressant. I think it's because I always picture the commercials where people are running through fields of flowers smiling while taking the medications, and I wonder why I don't feel that way. I put a lot of pressure on myself. So much, that when I let myself down, I figure it's time to go.

As I'm writing this, I'm realizing that I've never spoken so candidly about what has gone on mentally. I mention breakdowns, I mention that I'm not mentally capable of completing something, but I never openly say it's because I'm struggling to keep myself alive.

That's what I do on a daily basis... I try to be more of who I was and want to be, and less of who the Lyme makes me. I just took a month and a half break from medications - after a 2 week stay in the hospital - and I think I came out of the break with a much better perspective on this disease and the way my body and mind deal with it.

The biggest thing I discovered is that you don't know how strong you are until strength is all you have left.

I'd love to say that I'll never be in the dark places I've been again, but I realize that because of my own negligence I am now a lot sicker than I should be. I realize getting better is not going to be easy. It never was... I realize that there'll be many more long, dark nights and there may be one that I don't come out of, but I know how much I look forward to the future these days and how disappointed I would be if I didn't fulfill every last one of the goals I've set for myself.

Future... A new option for me. I realized during my break that I'd been living in anticipation of dying. I've come so close, medically speaking, that I couldn't help but think every night when I closed my eyes they wouldn't open again in the morning... Right out of the gate, when I was diagnosed, the doctors matter of factly told me that I was not going to survive my stay. That's what I've thought the entire time I've had Lyme - that I wouldn't survive my stay. I've thrown out the earlier calculations that I wouldn't make it past 30, and at my 27th birthday dinner, I proposed a toast to the future, I mentioned how happy we'd all be the day I turn 31... Though I know that the doctors that made those calculations were idiots, I can't help but keep the number in my head. It's been there for so long... Now it's there as a milestone. My friends dread turning 30, when I think that my 30s will be the happiest decade of my life...

As best as my body has tried to shut down, It hasn't, and I don't think it's going to. I'm certainly not planning on letting it..."

I'd like to add for those of you that haven't witnessed this side of me, or for those who have, that when I go into these extreme bouts of "Lyme Rage" I come out not remembering a lot of the details. I know that I can be extremely mean and vindictive, I know that I say and do things that I would never actually believe I could do in my normal life... It's always a lot to process... Sometimes I come out of a fit, just to find myself right back in one because I can't process all the information I have to process. Most of the time, I just want to walk away and pretend it never happened. I mean, if I don't remember - it didn't happen, it couldn't possibly be THAT bad, could it??? My friends that have witnessed it, know that it is THAT bad. It's terrible to not be in control of your body and mind at any given time. It's even worse to not to remember throwing the match down and burning certain bridges.
Andrea

……………………………………….

I stand up in my red patent leather high heels you gave me in May 2005.   The diagnosis of Lyme disease.  The beginning of the end. 

April 2009 you began injecting crushed morphine pills into your port-a-cath.  The talc from the pills clogging your lungs, slowly smothering you.  No one knew.

Today, these shoes mark a new beginning.

How come I did not see this letter until after you died?

This year, in December, you would be 30. 

I teeter, not used to wearing heels.  It is hard to walk.  The micro mini skirt keeps crawling up over my butt and bunching up around my waist.  The long blond hair falls in my face, gets stuck in my mouth and blocks my vision.

I am going to look good, even if it pains me.

Pulling my self up tall, I stand and wait.  Find my point of balance.  These are shoes you walk slowly in.  Being a 56-year-old blond babe in a micro mini shirt is a moment to savor.
Steve sees me in my outfit for the first time. 

He laughs in absolute delight.

“Damn.”  Is all he can say. 

“What’d you say your name was?”  he asks.

“Nadine.”  I tell him coyly.  “My name is Nadine.”

“Damn.” He laughs again wiggling his hips.

I want to tell him the shoes were a gift from you.  It is enough, though, that I know.  That in this moment I can stand straight and count my blessings.

Tonight, he and I will dance—me tall and steady in my new red shoes. 

Tonight—I will be someone new.

                                   Love You,
                                   Mom.

  

In Your Own Words

October 21, 2011

Dear Andrea,

After you died, I found a lot of stuff you wrote.  My Space, Twitter, Facebook, files on your computer.  I came across this in the days right after your death,and again the other day. 

Last week, while I was at the Writer’s Refuge on Whidbey, I brought a box of my journals and some of the files you kept. In it, I found the medical records from your days with Military Sealift Command.  There, in the file, were the test results you got back in January 2005.  The ones that said you had Lyme disease.  I am trying to reconcile this with the test results from your autopsy saying there was no evidence of Lyme disease.  What happened between January 2005 and September 2009?  I only know I lost a daughter.

………………………………..

23 March 2007

“Ticked Off”

When you’re called in to a doctor’s office at 23, there’s not much that runs through your mind, other than “I’m dying.” That’s what I thought; my life was over, nothing to will away but a suitcase full of shoes and the training t-shirt from the marathon I missed out on. Amidst the single anxious tear, I chuckled when I was told I had Lyme Disease, a couple of weeks of antibiotics, and I was in the clear – no big deal, right? Wrong. My career as a merchant mariner is now over, I moved across the country to Virginia Beach, and I have a permanent port implanted in my chest to administer IV antibiotics daily. Now 25, I live one breath at a time – sometimes holding it to take in the fading moment.

Coming off of vacation in January of 2005, I returned to Virginia (from the Pacific Northwest) to report back to work as an able bodied sea woman at Military Sealift Command. After slicing my thumb open, and losing feeling in my hand, I wound up in a shoebox of a neurologist’s office - to get a diagnosis in a hurry. Not wanting to accept a diagnosis of Carpal Tunnel Syndrome (a painful, progressive condition caused by compression of a key nerve in the wrist), I pressed for more testing. The doctor mentioned there was a small chance that I had Lupus (a chronic autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue), and sent me for a complete blood workup and nerve conduction studies. Within a week, I got a call that the neurologist needed to speak with me.

I remember the fear like it was yesterday, I clutched on to my then my boy friend, Scott’s hand as we walked into her office together. It seemed like forever, as she read through the list of negative results, before I interrupted her for an actual diagnosis. Sometimes, I wish I’d been more patient, just so I could have a couple more seconds of health. When she said that the Lyme titer came back positive, I started to cry. I feel foolish now saying it, but my only thought was – “Irene from MTV’s Real World: Seattle had Lyme Disease and left the show, but there wasn’t anything wrong with her.” I have to take a moment to apologize to Irene, because, two years later, I know that’s not the case.

When I started antibiotics to cure the disease, a barrage of new symptoms appeared. I was bedridden, from the first dose, with severe headaches and vomiting, and I couldn’t stand the light peeking through the hotel curtains.  A couple of mornings later, I couldn’t feel the right side of my face. I was petrified. That “I’m dying” thought returned, and I drove myself to the hospital. After various testing, I was discharged, and heard that “it’s just the Lyme Disease,” and “it’ll get better.” Unfortunately, that wasn’t the case, I returned to the ER two days later, and was diagnosed with Lyme Meningitis and Encephalitis. I was told, before I could think it, that I was going to die.

Being quarantined in an unfamiliar hospital, with eight states separating you from family and friends, is scary. I may have actually died, had Scott and his mother not been there. I was warned that many doctors would examine me, because they’d never seen someone that looked so healthy, but was so sick, and had “white coats” in and out of my hospital room for eighteen hours a day. No one could figure out how to make me better, though they had no problems figuring out that I was getting worse. When the Meningitis and Encephalitis were thought to be under control, I was discharged with a catheter that ran from my bicep to my heart, which I had to push antibiotics through every couple of hours. (A PICC line) With six weeks of IV antibiotics to look forward to, I checked out of my hotel, and returned home.

After six weeks of calling my doctor every day, demanding that the damn line be taken out of my arm, my time on IV antibiotics was up, and I could return to work, and take a shower without wrapping myself in saran wrap (the IV couldn’t get wet). For the first time in weeks, I was excited, and, almost two months after the initial diagnosis, I was told that I was done with Lyme Disease. Unfortunately, no one told the Lyme.

I returned to work in May of 2005, after the Lyme Disease broke me down physically and mentally. In June, I was sent to a tanker in the Middle East and, though I wasn’t feeling like myself, I was happy. After all – I had dreams of becoming a captain, and absolutely nothing was going to stand in my way. I’d told a doctor that said my sailing career was over that I was the only person that could make that determination.

To stay on the ship, and keep my doctors happy, I had checkups and MRIs in Singapore, and, when I started to get really sick again (in October), I went to the hospital in Japan, where I determined that I couldn’t keep my back turned on my declining health forever, and it was time to leave. 

With little time to talk, Scott and I arranged to get an apartment together in Virginia Beach, where I’d still be close to work, and one of the best Lyme literate doctors in the world (I didn’t even know such a thing existed until I visited an online Lyme Support Group). We also picked out a dog online, and I made arrangements to have her sent from Missouri to my parent’s house, in Washington state, where I was packing for the move.

Towards the end of October, 2005, Sadie (our furry baby) and I moved from Washington to Virginia Beach, where Scott and I picked out an apartment. We quickly set up shop and I got in touch with a nearby Lyme doctor (generally these doctors specialize in internal medicine or infectious diseases, and have done extensive research on tick borne diseases such as Lyme), and was put on her waiting list. I waited patiently for five months, as my health declined, and eventually, I was unable to dress myself in the morning. My original infectious disease specialist, who’d said that the Lyme Disease was gone, sent me to specialist after specialist to treat each symptom individually. At these “specialists,” I was always given a random diagnosis, whose symptoms hardly matched mine. Each of the visits left me feeling worse, and like I was making things up. After all, could one little bug, do this much to me?

It was after I was told I had Fibromyalgia (a chronic syndrome characterized by muscle, joint, or bone pain, fatigue, and a wide range of other symptoms. Many will be diagnosed with Fibromyalgia before Lyme Disease is apparent in tests), that I broke down in tears, and called my “last resort” doctor in Charlotte, North Carolina. Coincidentally, he had an appointment for the next week available, and Scott, Sadie, and I made the seven hour drive down. Though he had a very scary and intense treatment protocol, he was all I had left, and the only hope for a restored life.

My first appointment with him, in March of 2006, was nearly three hours long, and cost me 27 vials of blood. During this appointment, with my past in mind, we made arrangements for another round of IV antibiotics, to begin six weeks later, at my next appointment. Scott and I yo-yoed back and forth from Virginia Beach to Charlotte with Sadie every other week from April to July, when I entered remission.

Remission lasted precisely three months, and, after oral medications failed, I was put back on IV medications two days before Christmas. In the Lyme community, there’s a phrase “one tick, many diseases.” This phrase rang true when I was clinically diagnosed with two other tick-borne diseases that are suspected to be hindering my recovery. This round, I’ve been on IV’s since December 23, 2006, and my PICC line had to be unexpectedly removed two weeks ago. Last week, I had surgery to implant a subcutaneous catheter (medi-port) in my chest, which will be accessed on weekdays for IV medications. While they were cutting my chest open, I learned that sedation no longer works on me, a neurological side effect of the Lyme Disease. Lying on the table, crying and screaming in pain, my whole experience with Lyme Disease was summed up. The anesthesiologist didn’t believe that I could feel the doctor slicing me up and jamming a tube through my veins, just as many doctors watch me walk through their doors in agonizing pain, and don’t believe I am sick.

The last two years have matured me. I know not to take things for granted, and that things can always be worse. I’ve gone through stages of denial and acceptance, and have settled between the two with these three rules: 1. this is not “my” disease. I did not choose it, it is not welcome, and it can go away. 2. Before making life altering decisions, research (and lots of it) is needed. If I had read more about Lyme Disease, I would have known that I needed to be on antibiotics longer during the first round. 3. “Denial” is a river in Egypt, not a proper state of mind. Without accepting things as they come, it is nearly impossible to get over them.

*** I now run SEVA Lyme, a Hampton Roads Lyme Disease Support Group that focuses on Lyme Disease activism and awareness. Many people are affected by this debilitating disease, and there aren’t enough doctors who know how to treat it.

…………………………………………….

And I am not 100% convinced the doctors you had knew how to treat it either.  Treatments ranged from high doses of iv antibiotics to a suggestion that you have your aura read.  What am I, as your mother, supposed to make of all of that?  Except that none of the doctors really knew anything. 

And they still don’t.  Medical politics.  You were one big experiment to them. Cash up front.  

You were my child. 

I feel the eye of a hurricane building inside of me.  Storm clouds, high winds, rain spinning out, gaining force traveling across open waters. 

I hope it hits land soon.

                                    Love,

                                    Mom

8 lbs. on the dot...

October 19, 2011

My niece, your cousin, had a baby boy today. 

“8 lbs. on the dot…20.75 inches.” Your Aunt Linda texted me.

Just minutes before, on my way home from work, I talked to Linda.  After a full day at the hospital, she was headed home to rest.  Hospitals are exhausting.  All that waiting.  I called her, wanting to know if I could come be with her at St. Pete’s.  St. Pete’s where I sat alone with you many days and nights while doctors ran their tests, pumped you full of drugs, probed your body and argued over whether you had Lyme disease, MS or lupus.  It could not be Lyme disease, they reasoned with no scientific evidence, it has to be MS or Lupus.  When you and argued with them, they got angry.  Pulled the iv’s, stopped the tests, gave you release forms, and sent you home.

I am thinking of my niece.  Of being a parent.  Of all that means.  I want to call her and tell her to breathe deeply the scents of this baby, fresh from inside her.  To enjoy those first minutes when her baby will ask nothing of her, as he shakes off the transition from amniotic fluid to the warmed air room,  as he acclimates to the feel of her skin against his.  Those moments before his stomach rumbles, creating his first intense unpleasant feelings of wanting, needing, demanding that will grow as he does. 

I would give anything to be in that moment again with you.

I drop my purse and coat at the front door, let Sadie out in the back yard.  Stella wants dinner.  She gets a can of Fancy Feast.  As I put it in her bowl, she purrs. Sadie gets a can of Chef Boyardee Mini Raviolis.  I am not hungry.  My body feel like it has been beaten with a bat, like I was thrown from a car going 60 miles an hour.  It is all I can do to climb the stairs, pull back the down comforter and close my eyes. 

The sweet release of sleep.

Be seeing you.

                                          Love,

                                          Mom  

 

Perpective

October 15, 2011

Good Morning Andrea,

My stuff is all packed.  The cooler, the picnic basket, the books I brought to read, Sadie’s blanket--are all waiting on the screened in porch to be placed like puzzle pieces in the back of the Subaru.

I should be sad to leave.  I am not.  I am grateful for this six days here at the Writer’s Refuge on Whidbey Island.  I am looking forward to coming back.  I am looking forward to going home.

Yesterday Sadie and I went back to Double Bluff Beach.  This time I brought my backpack and packed a picnic.  As my feet left the pavement and hit the sand, my cell phone let me know I had a text message.  Earlier in the morning, I had texted Steve I was headed to the beach after noon.

“Hope your walk is good today.  Something about beaches…the wide expanse adjusts your perspective.”

I texted back, “That is where I am now.  Abt two miles fm car.  Pockets full of shells and rocks.”

“Pick out the best handful and leave the rest for others to enjoy.”  He wrote.

“K”  I answer.  I see a sand dollar lying on seaweed.  I am a woman with riches beyond measure.

I answer to no one here.  I am judged only by myself.  I will fill my pockets until they are overflowing. When they are full, I have my backpack.  This wide expanse of beach invites possibilities.

I do not know how far I walked.  There was no map, no itinerary, no clock.  There was only the tide changing, coming in. 

“Be careful of the tide.  It can strand you on the other side of the bluff.  The bluff is steep—cannot be climbed,” a sign at the entrance to the beach cautioned. 

I am all too familiar with being stranded.  Being closed in by tides of feeling, unable to climb or swim to get back home, I simply wait.  The tide will go back out again.  As it does, I sit on a piece of driftwood, and listen to shells being ground to sand, cockles growing hidden in bits of seaweed, dying rock crabs.  I let the wind and salt hour scour my cheeks and the tip of my nose until they feel like a layer has been abraded.  But I will not be stranded here today.  I am mindful of  when to expect high and low tide.

This pocket full of shells and rocks comes with me now.  A reminder.  When I get home, I will but them in a bowl and set them on the table.  They are the souvenirs of solitude I take with me from this place.

I wanted to see what was on the other side of the bluff.  More beach.  Miles of it.  It felt like if I kept going, I could walk the circumference of the island.  There would be another bluff that calls me out to see what lies on the other side.

Sadie and I sat on the beach and shared crackers and tuna fish.  I did not want hunger to limit how far I walked this day.  The only limitation I would accept, is the one I put on myself.  I would leave this sand and water when I was ready.  And only when I was ready.

Two hours later I turned around.  On the way out, I walked along the tide pools.  Tiptoed around small anemones.  Was careful not disturb the periwinkles stuck to bits of rocks and seaweed.  Counted mussels until I lost interest in that.  I picked up bits of clay, crumbled them, wet them with seawater and made a small bowl.  Then left it at the water’s edge, an offering of what, I do not know. 

On the way back I traced the lines of seaweed washed ashore.  It was full of dead rock crabs, bits of empty shells, a couple of dead Lion’s Mane jellyfish looking like congealed globs of blood, a dead fish, and what looked like a dead baby sea lion with the placenta still attached. 

In the midst of all of that, another sand dollar.

I need a shower now.  I have to check out of here by noon. 

The back of my car is full of sand.  My pockets are filled with shells.  My heart is still again.

Refuge.  Retreat.  Regenerate.

This is something new.

                                        I love you Andie,

                                        Mom

Double Bluff Beach

October 13, 2011

Sadie and I are back from the beach. 

I cannot believe all the money I have spent in travel dollars with this piece of paradise in my backyard.  The tide was out.  The sun was out.  The few people on Double Bluff beach were walking along the tide line with no shoes on.  It is October.  The wind was blowing and I would have been uncomfortable without a coat.  With curiosity I watched a grown man, in black wool dress pants, roll them up, take off his socks and loafers and walk out into the surf.  He did not flinch from the cold.  He must have sensed me staring at him, because he turned to me and smiled.  Sadie ran to him at full speed and I was afraid she was going to jump on his nice clothes.  I called her back and walked away.

The beach is dotted with driftwood shelters that give way to steep clay cliffs.  Chunks of clay, no bigger than a teardrop to as big as a Volkswagon bug scatter the beach. Picking some up, it crumbles under too much pressure.  It feels good to crumble it in my hands.  Always surveying the sand and rock landscape at my feet, I find the remains of rock crabs, a huge crab claw, scallop shells, whelks and giant moon snail shells--all unoccupied.  The ones that still had tenants remain on the beach.

While Sadie chased the surf out and back, I walked close to the water, letting each foot sink slowly until the ground compressed beneath it and gave no more.  It was unsettling at first, to have each foot sink until I got the feel for it and did not fight it. Almost like an earthquake, when the ground moves on its own accord.  Or life.

People bring their dogs to Double Bluff beach.  While the humans walked past each other, each engrossed in their own musings, the dogs greet each other enthusiastically. They play until their owners move uncomfortably away and there is danger of separation. 

I think that if they could, they would yell. “Wait.  Wait.  We want to visit more.” 

Each time, I stop to let Sadie play as long as she wants.  To follow the dog and its owner down the beach, me trailing behind looking for shells.  Me listening to the water speaking in a thousand tongues.  I do not have to understand anything.  I can just be.

You would love it here.  I feel it. I smell it.  I taste it.  I hear it.  My sailor girl.   

It is Thursday.  I am trying to stay in the moment.  I am trying not to think about reentry to my life on Saturday.  I should have taken more time for this indulgence in solitude. 

Until next time.

                                    Love,
                                    Mom