I’m goddamn f&%king miserable

I guess life is about expectations. If you set yourself up for success or failure by believing a certain outcome is imminent, if it doesn’t turn out how you anticipated you end up, well – disappointed. That’s why hope is such a dangerous thing. A beautiful thing, but a dangerous thing. 

Usually when you start your day being the only person in a room full of doctors and nurses without your underwear on, you’re setting yourself up for some kind of disappointment and yet I showed up to the hospital yesterday working on being totally zen. I had listened to enough India Arie to have the song Private Party on repeat in my head. (In fact if you have that song just turn it on now and listen for the rest of this read, because you’re going to need some goddamn zen after this). I happily came to the OUTPATIENT building thinking to myself “Golly gee, after all these brain surgeries it sure will be nice to have an easy one!” I thought this because a week ago I sat in a room full of doctors (undies on that time – only relevant because I think it really helps to minimize the uneasy power dynamic) and they said “Compared to what you’ve done, where you’ve been, this should be so simple, so easy…” And I proudly thought to myself they only know half of my life, the surgeries, I’ve been through enough heartache that THIS, this will be a cakewalk.

So imagine yesterday when I am clearly at the disadvantage being the one naked and strapped to a bed when they drop a bomb on me. “We think you should have a lumbar drain for a night or two, maybe, just maybe.” It was sort of a question, sort of a suggestion, sort of the sound of a new person who was going to be inside my head trying to ease me into the news that the word OUTPATIENT (yes I am yelling that) is a goddamn, f$&king suggestion. Then the good old neurosurgeon came in and I got to negotiating. Fine I’ll give you one night, 24 hours. We settled on Wednesday at noon. Yea, as a terrible negotiator I gave him a whole extra 24 hours right off the bat. 

“We’ll reevaluate on Wednesday then,” he said.

Ok, so this sucks, but I can manage 2 days on a drain. I can manage that. Then they pull it and I get the heck out of here. Then the peanut gallery (read: friends and family) had to go and care about me and decide that they would ask how long drains traditionally stay in. 72 hours is the answer, then they clamp it, have you walk around for a day without it and then decide if they will pull it and send you home.

I was screaming  in my head “I AM NOT A TRADITIONAL PERSON! I AM NOT A TRADITIONAL WOMAN! I AM NOT A TRADITIONAL PATIENT. I just want my life back, give it back to me!” I was pleading in my head. I need things to be there when I get back, I need a job and a home and life to go back to or else what the hell am I supposed to dangerously hope for. I felt those things so urgently, I felt them slipping away from me.

It gives you the best chance of this working,” said the new, young, dashing doctor.

Ok new guy, that’s all fine and good but you are crapping all over my zen. And still, even though he took a steaming dump on my zen, I gave him advice on how to get pumped (i.e. march through the halls singing All I do is win and then dropping a mic as he rolled into the OR) which I don’t think he took.

The neurosurgeon who I greatly admire and trust looked at me with those sad empathetic eyes of a man who truly cares but just can’t offer a better answer. I saw the truth of it in his face and began to cry out of my one eye that cries, while my monster eye that doesn’t seem to fatigue or tear or anything looked on confused about what the other eye was so down about.

I got pissed at my family for caring, which I know is unfair. I told the anestesiologist to knock me out quick because the attitude was going “quickly and efficiently downhill.” The tension between the various people in my cheering crowd appeared to be growing  and I felt like I somewhat was able to lean on this woman who was about to knock me out. She was so nice to me, she got me, she shared with me as people tried and tried and tried to get IVs in my tired veins, and she is a bad ass woman paving the way for more bad ass female doctors to come after her. Though I may not have been able to show it I was full of gratitude at the way my friends and family did try to jump to the occasion even offering to go to my jobs themselves so I wouldn’t disappoint any of the people I work for at my multitude of jobs that I deeply admire and respect. I deeply admire and respect my friends and family for trying to to help in that way and with all their words of comfort, though I was not in a space to hear them. And I love them for wanting me to sacrifice to heal. I’m just tired, that’s all.

So here I sit, on total bed rest. It’s a hoot you should try it. I get to hoist myself in a bed pan and pee all over myself. If I try to sit up or lay down an alarm goes off and techs and nurses come running. I get shots in my belly every 4-6 hours to keep my blood thin and pain killers every 4 hours to keep me sedate and from feeling the drain going 10 inches up my back. Or the incision going two inches into my belly.  I have a sore throat to defeat all sore throats and my right nostril constantly bleeds. If I sit up at all pain shoots up and through my body hitting hard in the face. 

They told me the surgery wouldnt be hard. But I should have told them that having a lumbar drain is not easy. They do seem to know that, teams of residents come in and show me kindness and empathy and I know I’ll get through this.

It could be way worse. I’m not dying, I am surrounded by blessings and love and light. But the disappointment of a bait and switch is sitting quietly on my heart. It’s going to have to sit there for a moment while I process it.

If I’ve learned anything through all of this, healing is time.

I need some time.

Yesterday before I came to the hospital I watched Tracy Morgan, who went through a horrible and unimaginable trauma, give his first interview. He was raw and honest and talked about being mad and throwing things and then, he talked about beginning to get past that. And he promised that when he was back to 100% he would make us laugh again. I rarely let myself just sit with my anger the way he did. So I will take inspiration from his hope and I will have some too.

Right now I am pretty miserable in my physical body. But this dangerous amount of hope, a little India Arie, and all the love I am lucky to have showering down on me will keep my heart afloat. Sometimes our haggard minds, though tired, will pull our bruised and battered bodies out of the disappointment and into the light. 

Peace and love,

Samira

Also: this is what I look like right now… ATTRACTIVE.

You cant tell, but i’m actually smiling under my gauze stache…

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7 thoughts on “I’m goddamn f&%king miserable

  1. Samira,
    Sending you loving, healing, and peaceful thoughts! And are you joking, that bandage mustache is absolutely gorgeous on you! Trend-setter!
    Peace,
    Dawn

  2. god damn western medicine- I hate it and I’d be childless, infected and dead without it. So I don’t really hate it, just the helplessness of being a westerner in a zen-like body, shared by all but unique to me. So we’re stuck.

    It feels unfair. It’s the best they can do. What seems dishonest your body makes honest. Bait and switch becomes this is it. You’re strong, you’re getting healthy, come home soon. Draw strength from us-your supporters. Regular life awaits. We miss you. Love and healing, from all the people whose lives you touch and me.

  3. Wishing you healing Samira. I can’t begin to conceive what you are going thru. I am a 56 year old women with 3 daughters and I cried reading your blog. I can’t imagine having one of them going thru what you are. I just want to reach thru and give you a hug. I was just diagnosed in Feb. with an AN. I appreciate all the feelings you are sharing with us. Honesty is so rare. My doctors have recommended wait and watch and that what I plan on as long as possible. I will be following your journey and you will be in my thoughts and prayers. I am at a loss, for words. HUGS! Thanks for sharing.

    • Oh and imagine me coming right back through and hugging you back. Watch and wait comes with its own challenges but I hope your AN behaves like most of its slow growing brethren so you live a long and happy life with your daughters. Keep me posted on how you are and consider me a friend. Sending love and light. With great great gratitude.

      • Thanks Samira, I look forward to following your journey. You are very strong young lady and I hope your healing comes quickly.

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