Saturday, October 22, 2011

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 50th 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.

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,