Stages of Grief: Rage Edition

My irritation, anger, and frustration are close to the surface these days. I want to lash out at everyone. And I feel like I've taken crazy pills every time I visit the Chiari support boards. Everyone is hellbent on “have a positive attitude!” and “I'll pray for you!” Nobody acknowledges the grieving process that comes with having an enormous and tragic roadblock thrown into your life.

Having a positive attitude doesn't change anything. It doesn't make you work harder toward a cure, and it definitely doesn't make the pain stop. There is no switch labeled “despondent/ecstatic” and no way to flip it yourself if there was. Don't get me started on “I'll pray for you” or the bible verses casually flung at people. A) you're assuming everyone is the same religion as you which is downright obnoxious, and B) you're saying, “YOUR prayers are ineffective, but god listens to ME, so I will pray that your situation is resolved in the manner I find most appropriate.” I used to just smile and say thank you when people forced their prayers on me. Now I don't respond at all.

I'm grieving. People say you never know but they also say get used to it because this is now your life. If I thought this pain would never end, and I would never have children, and I would never get back to working in my chosen career, and I would always be a burden on my husband and friends... I would kill myself immediately. That's the truth of it.

Did you know I had picked out names for my future kids? Caleb and Lucas, Hannah and Gracie. Their middle names would have an H in them, because my husband and I both have middle names with H's where they don't belong: Erich and Nichole. Did you know I had fliers printed for my childbirth classes, and two locations who had offered me teaching space? Did you know I was asked by an IBCLC to help her design teaching material for breastfeeding support? Did you know I have boxes and boxes of pamphlets, guides, posters, charts, and props for my classes? Shelves upon shelves of reading material for moms? I look at my office now and think I should just sell it, sell it all, because even if a neurosurgeon would take me on as a patient and do the decompression surgery, there's no guarantee my vision will return to normal, my hearing loss will come back, the nerve damage will reverse itself, my brain fog will miraculously lift...

I'm depressed and scared and sick to death of sugar coating shit. I'm tired of clawing my way up from rock bottom only to find myself here again and again. It's made worse by the fact that I was so close, so very close to making my dreams come true. I was a hairsbreadth away and I felt triumphant. I felt I had proved everyone wrong: the girl who barely graduated high school, the homeless woman, the drug addict, the abused, shunned, shy woman with the destroyed spirit... That woman had risen up and was making a contribution to society, supporting other women with knowledge and compassion. Now it's gone and I'm quickly losing hope it will ever come back. I refuse to play happy to make other people feel better. I am allowed to work through my grief any way I see fit. I'm not responsible for other people's feelings or reactions. I will be honest with myself and everyone else. This fucking sucks and “thinking positive” is a drop in the endless ocean of my grief.

Fifteen Days Later

Everything frightens me.

I can't sleep. Am I dying?

My eyes are worsening, day by day. Am I dying?

My feet are so swollen I'm getting stretch marks on my ankles. Am I dying?

The prone position is slowly becoming a necessity as walking, standing, and now sitting are becoming more uncomfortable. Am I dying?

The more energy you give to something, Phil says, the more likely it is to manifest. Being stuck at home with nowhere to go and nothing to do - how can I not spend time dwelling on this? We don't have any answers. I am trying to be patient. I am trying to use my Jedi mind tricks to get the neurosurgeon to bump me up in the queue. I am hounding my normal doctor for answers. I am Googling surgeries, doctors, message boards, questions to ask, answers to seek... How can this be happening to me? Am I making the right decisions for my care? Is my husband angry, frightened, sad? Is this going to affect my job? My career? My school? My sister's wedding? My relationships with friends, family, Phil?

How long do I have to survive this limbo?

My Failing Body Strikes Again!

Not only was I diagnosed with two auto-immune diseases, and suspected of having a third disease, now I have been told that I have a brain malformation that's fairly serious. Huzzah!

Last week my heart started pounding. Not unusual, but instead of galloping like a frightened circus pony for a few minutes and then suddenly stopping, it didn't stop. Every time I stood up I felt faint. My vision would go tunnel-y and gray. My extremities were tingling. I was urged by a nurse to dial 9-1-1 but I laugh in the face of danger. Hardy har har! The next morning I woke up with my vision doubled.

Fearing I'd done irreparable harm to myself (hardy... har?) I went to the urgent care. Still, I thought, it's probably nothing to worry about. I'm fine. My body is just weird, that's all.

Long story short(er): my driving privileges are suspended, my work privileges are suspended, I had a nightmarish MRI, and instructions to speak with a neurosurgeon. I learned through my amazing Google-fu skills what I am being diagnosed with is Arnold-Chiari Malformation. It's a congenital thing. The part of my brain near the hole in my skull is too big and crowding the brain stem. My dad AND my husband joked that they knew I was smart, but not so smart my brain was growing out of my skull. HAH, thanks a lot. Anyway, this crowding causes the cerebral spinal fluid to back up in my head, causing hypertension in my brain. It causes all kind of delightful effects, including vision impairment, dizziness, fainting, heart palpitations, nausea, etc., etc.

I feel betrayed, yet again, by my body. And now I have two or three weeks to dwell on it, thanks to slow doctors, fainting spells and bad eyesight. I'm bored, frustrated, scared. Sometimes my husband understands, sometimes he doesn't. He's trying the best he can but he doesn't deserve this any more than I do.

Man, my job is going to be PISSED if I have to have brain surgery! Think of the recovery time on that!
  • Current Mood

repeat, ad infinitum

another newly born
tucked under my chin
frog legged

another newly born
snuffling in sleep
a little hand reaches
she won't remember

but i will

another newly born
scooped up
another memory tucked away
"she's beautiful"
i smile and say

behind that smile
the guilty wish
that frog legged dreamer
those reaching hands
that newly born

was mine

An Apology Never To Be Read

He handed me a sweet tea and I sipped it happily, grateful for the surprise treat. I caught him smiling sadly at me. "See, this is what makes me happy... Making you smile. You never smile anymore."

It broke my heart.

These past few weeks have just been so hellacious... Work, school, dropping IZ, a screw-up in my meds, the threat of losing my job... He says this will pass. He always says that. Right now I can't see past this moment. The fear that rises in my throat each morning when I remember what's going on. The panic, like a giant fist crushing my chest, when I walk into work and wonder what kind of harassment I'll suffer or if I'll even have a job by the day's end. The knowledge that I'm sick and I will be sick until I finally die. The fear of dying. The fear of what comes next.

I want to go back to smiling. I want to go back to knowing that (barring this speed bump) my life is more wonderful than I could have imagined it being five, ten, fifteen years ago.

"Maybe you should start writing again," he said.

Maybe I should. Maybe I am. And maybe I should go do some homework before I have to pack up and head back to school. The days are long, but somehow not long enough...

Years Ago

"I wake up scared,
I wake up strange,
I wake up wondering
If anything in my life is ever gonna change."
Barenaked Ladies

Ages ago, when I first heard that song, I claimed it as my own. I always felt out of place and alone and I wondered if I would ever find my way home. It was such a foreign concept: home. A place where I could be at peace, not only physically but within myself as well.

Now I'm there. All the suffering Years Ago Me went through was for a purpose. I became Me - strong, playful, full of life and joy and empathy. I have a husband who means the world to me and I see that reflected every day in the way he cares for me. We are building a beautiful home together, complete with furry children. The career path I've chosen is slowly becoming a reality. In other words, all of my dreams are coming true. I've come home.

I hear that song now and it makes me weep. Poor, strange child that I was. Always so awkward, always longing to belong. I wish I could go back in time and soothe away her fears and her pain. Then again, if I hadn't gone through all I did, I wouldn't be the person I am today.

Remembering to honor the journey - I think that's what I need to recognize today.

my life as of now...

Read through a lot of old entries over Christmas break. What the... who was that girl? Did that really happen to me?

An update on my life... TGG and I bought our first house a year ago last summer. We got married September 10th of this year. 7th House Birth Services is slowly becoming a real thing. I'm a doula, a lactation educator, a childbirth educator... I volunteer at a drug rehab center for women who have kids, or are about to become mothers. TGG and I have our three furry children: two cats, and over the summer we adopted a Pomeranian/Papillion doggy from a rescue.

Life is amazing. I worked hard to get here. I have good days and I have days where things aren't so great. I've been diagnosed with two auto-immune disorders but I don't let that stop me, obviously. The things that happened to me in the past don't cross my mind often - I keep myself so busy I don't have time to get bogged down in What Could Have Been.

If you're reading this, know I'm happy. I am. And I'm going to keep paying it forward and helping my community. This is what I'm meant to do and I'm going to keep doing it as long as I can.