Sick Girl

September 2014

I went pretty crazy about 7 or 8 months ago after an ER visit and a couple of follow up visits to a doc unofficially clued me in that I was a "sick girl." Not a sick girl in that "drink 7up and eat some soup" way; I was unofficially "sick" in the "get used to it, sister, this is part of life now" way. I cried. A lot. After the referral to a "specialist", I knew. Everyone else was either being blindly optimistic or honestly just believed I was either drama-queening or hypochondriacing. Everyone else accepted it was innocent until proven guilty. But I knew. Deep inside, down where my fear hides, I knew. When I say I cried a lot, I don't mean I spent an afternoon eating mint chocolate chip Blue Bell mixed with drops of salt water. I mean, I cried for no less than a month.

They say there are stages of grief; denial, anger, bargaining, depression and acceptance. I suppose, like most things, I did them all out of order. Depression and acceptance came first and simultaneously. Denial took the form of an apartment in Mexico and a whole new set of people who didnt have to know or care I was "sick", people who I didnt have to try to explain it to, people who didn't need to understand.  I'd accepted it inside myself, but I still needed to run away from it for a while. Not so much to deny it to myself, but to avoid having to deal with anyone else's denial. To avoid having to talk about or plan for or take responsibility for it. Acceptance, to me, meant running straight to a life that I wanted and knew I'd be incapable of at some undetermined time called "later."

Denial was a beach bar in Mexico. 

At least until anger took over. Anger came 15 feet from Denial. I was laying in the sand. My feet were bargaining with the ocean. I think when discussing the stages of grief for your own life, they leave out fear. Maybe it's lumped in as all of us psychology types know that the root of all anger is really just terror. I distinctly recall having a 12 oz bottle of Mexican beer in one hand and a seashell my son had just handed me in the other when I heard my cell ringing.

I think it is worthwhile to note that I never brought my cell to the beach. First, Mexico is a bit notorious for the sticky fingers of its citizens. Second, my time with the ocean was sacred haggling time where I tried almost exclusively to never interrupt with utterly ridiculous things like  communication with the outside world. Third, I was in Mexico. Answering my phone would cost me several dollars a minute. No thanks. That can buy a lot of booze in Denial. 

But I believe in things. I believe in internal voices and guidance along the road of life and "I just had this feeling"s. And that day, one of those sort of things told me to get up from the beach, walk to my Hacienda and grab my phone. I listened because I believe in those things. I've experienced the miracle/horror of a natural birth and that mythical moment people hear about when you just KNOW it's time to push. It's overwhelming. You feel more certain of it than anything in your existence. This urge was no less strong than that. 

So I got up, walked the 700 steps to my apartment, grabbed my phone and went right back to my beach towel. That was an hour before it rang.

I heard it ringing, a miracle all its own on a busy touristy beach 15 feet from a beach bar with tourist-attracting music and ocean waves competing to be heard over drunk vacationers. I had it in my hand before it stopped ringing. I didnt recognize the number but I knew. I knew it was the doctor. I suddenly knew why I had the urge to push. I knew. And I froze.

I didn't answer it. I sat frozen at Denial with a Mexican beer still in my hand, a seashell in my lap, and fear in my other hand. Fear was blinking a blue voicemail notification light. 

I'm not sure how long I sat there like that, staring at Fear, my heartbeat trying to regulate to the blue pulse. There it was. Doctors, especially specialists, don't call you with good news. That doesn't happen. I've received 2 phone calls from doctors in my life. One was to tell me I had cancer and a surgery needed to be scheduled asap. And this one. At that moment, I thought, and maybe even said out loud, I preferred the cancer call.

Either a few seconds or a few minutes or maybe an hour of being hypnotized by the blinking blue light, I pushed a button amd pulled the phone to my ear. A female voice told me it was very important that I call Dr. Reality as soon as possible. There goes any hope that it was just an unprecidented call telling me that I'd, in fact, been drama-queen-hypocondriacing and I was so totally fine and as a matter of fact I should go start prepping for a triathlon cause I was THAT healthy. 

Goodbye blue blinking Fear. Time to woMAN UP and return the call. I was still in Denial and still holding 12 oz of Mexican medicine when I pushed another button.

After about a $20.00 hold time, a female voice started saying a lot of things I didnt understand about lab levels and diagnoses and prescriptions and urgency. There were as many acronyms as there were actual words. I recall asking more than once "what does that mean" and "can you repeat that" and things of that nature. I blamed a bad connection because I was in Mexico. It wasnt a bad phone connection. It was my brain that was breaking up. I said something about being away and it was agreed to mail me prescriptions to pick up later. 

As soon as I hung up, I wrote down the acronyms I remembered and anything else that seemed important to make sense of later. I texted my mom. I said this to my son "I just talked to the doctor. It wasnt good news." My son walked up to the bar of Denial and ordered me 2 tequila shots. 

That phone call cost me $141.72 and so much more.

It took me about a week to use google enough times during rare sober moments to completely decipher all of the acronyms and words of that phone call. I already knew some of them. I'd been afraid of that one acronym since I was a child. This is a family disease. That particular set of two letters and what it does to a person is far too familiar to me. Anger was on a low burner and finally came to a rolling boil. 

I was mad at God. Funny, I think, because I am Buddhist and have no relationship with God. I lashed out at anyone I could. I pushed people away. Any people. All people. Even my sons. Everyone. Except the bartenders at Denial. They were the only people I wanted to talk to. I wanted to talk to them about tequila. I pulled the ocean close. I let my anger happen. And the crying started again. I did it in private. Every chance I got. But it was mostly anger. And by anger, I mean fear. The afraid-rage led me down some pretty dark alleys inside me. Led me to do and say things that don't agree with the me I was 7 or 8 months ago. I'm still roaming them. I've come out into the light a few times but I'm mostly surviving by moonlight. I'm still pissed. And terrified.

I started talking about it though. Started giving names, mostly acronyms, to the hell I'd been going through because of them. Notice that is plural. I forgot to mention that the doctor dropped another acronym on me that day at the beach. Two diseases. Lucky me. 

I walked around as though it didnt hurt and I was fine sometimes. Pushed myself past where I should have just to spite these mother fuckers called diagnoses. I accepted the bad days and spent them in bed. I vowed to talk to the ocean every day and I accomplished that all but one day. I was incredibly angry, more than was necessary, that I was being forced to leave my beautiful sea to go deal with S.I.C.K. 

At that moment, in those weeks, still today I suppose, the ocean is my only comfort. It's my only friend. It's the only thing that helps at all. It's the only thing I can talk to. The only thing that understands turbulence and calm. Storms and sunshine. Gentle and harsh. It understands being all skaken up and getting your foundation pulled from under you with a rip tide. The only thing that can relate to everything I am feeling. The only thing that will hug me anytime I want and hold me up when I cant move and let me dive as deep as I want and discover. It is the only thing holding my sanity together. It understands. And I had to leave it. I waited as long as I could.

Then I came "home." Home isnt this anymore. This place I'm sitting in to write this. This living room. This country. This State. This house.  Home is a place where I feel safe and free to be as screwed up as I want. Home is a place where someone understands how I feel and will gently help. That's not here. This place is full of TVs and iPads and thousands of square feet of things that don't matter and always need to be cleaned. Here is a place where people are supposed to care and don't. HERE is where I have to be sick but I have to be sick alone. Alone but surrounded by people who don't understand. Who can't see the pain I'm in; emotional, physical, spiritual. And even if it is seen, it's quickly dismissed and attention returns to the preferred piece of technological distraction. 

I've never felt so alone in my life. Here is a place with no ocean. Nobody who doesn't know I'm a "sick girl". Nobody who has no obligation to care or ask how I am. Just people who I need desperately to talk to and reach out to, explain how not Ok I really am, but who don't hear me or don't care to . I am alone. And there is no ocean.

And then I woke up this morning. I don't know how to precisely make it clear how this sickness operates, I dont understand it all myself. But today has been, to date, my worst day. I always hurt in the morning. That isn't unusual. And I did quite bad today. I assumed it would improve. 3 hours later, I was in the bathtub in scalding water pumped full of meds, tears streaming down my face. 

Before you decide that this whole post is some pity party, I'd like to make something clear. I don't cry from pain. I cry. I cry and scream and kick and yell over life, love, frustration, anger. Anything and everything not physical. But you can dig a rusty ice pick into my calf or break a toe and you won't see a single tear. I've always been tough, but the one advantage to living with an extremely painful disease is that pain doesn't hurt me like it hurts you. I don't so much as flinch at a tattoo gun. A punch to the face (and I've taken my share) won't do anything but piss me off. A steady-voiced "Ow. That hurt" is as reactive as this girl will get. I don't cry about pain. It just isn't how I operate. I'm past that. 

But today, in that bathtub, I was crying over pain. I fucking hurt. More than I have ever hurt in my life. I hurt. I am taken aback, shocked, absolutely in awe at the level of pain I am in. On that dumb 1 to 10 ER scale, I am on "worse than childbirth." And it is all over my body. It has taken me, so far, 7 hours to write this because it hurts so much to type that I have to take breaks. Meds didnt help. Scalding water only helped a little. Nothing is working. I've cried 3 times today from pain. Today, I need someone to care. I need. I considered a trip to the ER to beg for anything to make it stop. I decided against it. Because this is my life now. This is what makes me the "sick girl." 

My "husband" has only looked up from his iPad to watch the TV. My boys are buried a computer screen, an iPhone screen and I haven't even seen the oldest one's face today (nor his car). I have mentioned that I've never hurt this bad before. I have cried in the same room with them. But what can they do? What difference would them actually caring make anyway.

This is life now. I am the sick girl and I am alone. But I'm going back to the ocean soon. The ocean helps. But I'm pretty sure that I've cycled through every stage of grief today. I guess the end of this rambling blog post is acceptance.  I'm a sick girl and I never won't be again.