Tagged: brain surgery

Hospital prison log in review: A week in the slammer.

I spent the past week trapped in a goddamned hospital room. Below you’ll find a collection of my daily updates and random musings from my incarceration. It was highly irritating. It’s ok if you think I’m a hero. I probably am.

My "inpatient irritated" face. Goddammit.

My “inpatient irritated” face. Goddammit.

Enjoy, fuckers.

St. Luke’s Hospital Prison Log
Day One:

March 5, 2014

My captors have succeeded in confining me to a bed in the middle of my cell. I’m under 24 hour surveillance. The food served to us is clearly meant to induce gen pop starvation, rendering inmates too weak to revolt.

I’m using IV needles to scratch out a prison tat. Gonna make some hooch by fermenting SunnyD and dinner rolls in a bed pan.

The smuggling in of any/all contraband is encouraged.

For now, I’ll be singing old spirituals and dragging my metal cup across the cell bars.

Goddammit.

March 5, 2014

Things that are NOT fucking funny. Apparently.

1.) Penciling in “Beer” on the drink list on the dinner menu in the hospital.

March 5, 2014

A nurse (not mine) just walked into the room to give me a cup of water and to turn out the light. I saw her face for half a second, then she turned and the lights went out.

For no fucking reason, and without even thinking, I blurted out, “Are you a twin?”

She spun around, looked at me quizzically and replied, “Yes.”

I don’t know what shocked me most, that I actually fucking asked that, or that she said yes.

We’ve never met, nor do either of us find the other familiar. We ran through lists of possible connections, all the way back to forever ago. She’s much (much) younger than me, we come from different cities, and she hasn’t worked here long.

What the fuck just happened?

And how did I become the fucking nut-job lady on the neuro floor who asks complete strangers if they are a twin, anyway?

I’ve got to get that beer back on the menu.

STAT.

St. Luke’s Hospital Prison Log
Day Two:

March 6, 2014

There is an alarm on my bed. It’s a “She’s trying to escape!” type of alarm.

I have voiced my indignation via written messages that I have held up to the video camera (aka The Eye in the Sky) that my captors use to watch my every move.

THERE IS A GOTDAMNED ALARM ON MY BED.

It’s starting to smell in here.

March 6, 2014

Mysterious package arrived at the prison today from an anonymous friendly on the outside.

In it were the closest things to my favorite kicks that I can get while incarcerated, along with enough Gummy Bears to pay off the guards for their continued cooperation in this smuggling operation.

Kicks

Sweet kicks.

Great job gang. Be safe out there.

March 6, 2014

Trying to remember if, last night, I was just imagining how funny it would be if I picked my nose on camera, or if I actually picked my nose on camera.

Both scenarios are equally plausible.

Shit.

Unrelated, after listening to his voice this afternoon, if the new patient in the room across the hall doesn’t end up looking exactly like Lou Ferrigno, the world as I know it is a lie

Update on Lou Ferrigno:

Lou missed the cut off for ordering a dinner meal. HULK SMASH.

His wife calls all the staff members “girl”. As in, “That was a good idea, girl.” or “Hey. Girl, can you get me a new chair?” (I should clarify that she doesn’t say it in a familiar, friendly way. At all.)

This just in!!!! “Wife” is actually Lou’s mom.

Further update on Lou Ferrigno:

Lou is talking to family member (maybe wifey?) on SPEAKER PHONE, and while talking about his tumor, his wife busted into Arnold Swarzenegger voice with, “It’s not a too-ma.” He replied in Arnold voice, in turn.

My mind just exploded.

St. Luke’s Hospital Prison Log
Day 3:

March 7, 2014

I’m pretty sure I’ve figured out which of the assistant guards flagged me as a flight risk. He’s a young man, and clearly dislikes me. Even so, I can tell he’s also a little bit afraid of me. What a brave boy. I’m sure I can bring him over to my side through the magic (and friendship) of My Little Ponies. I’m confident that this is the way to his little Brony heart, as he’s unwittingly indicated by his peculiar behavior, lack of eye contact, and choice of footwear.

No man can eat 50 eggs.

Befriending the narc on cell block N(euro).

Befriending the narc on cell block N(euro).

March 7, 2014

This little piece of awesome made it through the prison mail room, today!

Good to know that people on the outside still get you…

True story.

True story.

Godspeed, all my freedom fighters.

From the hubby via Facebook (March 7, 2014):

Two full days alone with the natives and still no sign of their leader. So far, they have not turned against me. Sometimes I think they think the disappearance of their leader is because of me. There have been a few moments when things got a bit dicey, but we were able to strike a deal and keep peace between us.
I remain positive that their leader will appear soon. Until then I keep my guard up in case of an uprising.

Aaaanooother Update on Inmate #26627 Lou Ferigno:

One hour post-extubation Lou Ferigno turned into a 3 hour post-extubation John Goodman, who turned into 12 hour post-extubation some dude who made 3 open-door-speaker-phone conference calls all before 9:00am today. Because, he may not be Lou Ferigno, or John Goodman, but goddammit, he must be more important than any of us assholes.

Also, one of the more confused (and very combatant) inmates just started barking. I think, perhaps the line between the Neuro cell block and the Psych cell block is a fine one.

A very, very fine one.

Ruff.

St. Luke’s Hospital Prison Log
Day Four:

March 8, 2014

Forgetting Mrs. Santiago’s medications is the new black.

orangeblack

St. Luke’s Hospital Prison Log
Day Five:

March 9, 2014

Things got a little dicey on N(euro) block this afternoon. One of the inmates was screaming that one of the guards was “running her mouth when she shouldn’t be”. That’s about all I know. I was trying to dip, but that shit happened while *my* cell was on lock down, because none of your goddamned business.

Otherwise quiet Sunday on the block. Made eyeliner out of deodorant and pencil lead. One more jelly packet from the mess hall, and I’ll have enough to make some hair gel.

Sonofa.

March 10, 2014

Thanks to all of my pals for making my time on the inside much easier. You turkeys crack me up. Best care packages, and best looking mules in five counties. Bet.

March 10, 2014

THIS. I’m calling this infusion “PAROLE”. I’m about to get sprung from this joint, y’all. *does the Cabbage Patch, Running Man, Coffee Grinder to end pose*

I'm out, bitches.

I’m out, bitches.

St. Luke’s Hospital Prison Log
Day six (and final) entry:

March 10, 2014

Like a fart in the wind.

Like a fart in the wind.

March 10, 2014

Okay, this is just the sweetest photo of my daughter. (Taken from my bed.)

Perched in my window.

Perched in my window.

March 11, 2014

I’m using the bathroom without being watched by a nurse, for fear that I might have a seizure and fall.

This is some exciting shit.

A letter came today.

A letter came today. In the midst of a very trying week, in between conference calls, speaking engagements, and an overstuffed Inbox, it appeared. A letter with the power to calm a worried heart, provide much needed perspective, and offer a reminder of how much we all really need each other. One little letter.

The past few weeks have been disappointing. My neurological disease(s) continue to fuck up my groove, now causing issues my endocrine system. I’m spending more time in hospitals and doctors’ offices than I have in the last two years combined. We are planning and strategizing and preparing for battle. Some days it’s disheartening, frustrating, tiring. Other days, I just slam a gallon of coffee and give it everything I’ve got. (And then I blast “Damn it Feels Good to Be a Gangsta” by the Geto Boys on my car stereo and think, well shit, I’m still here, I still got this, B. This is some serious badassery. I just gotta keep doing what I do as long as I can do it. Because I’m lucky to be here.) So, there are good days, bad days, and everything in between, but generally, it’s been a tough burden to bear. And then…

A letter came.

Across the country, a five year old that I have never met has just come out of another neurosurgery. He has one of the conditions that I have, a tethered spinal cord with syringomyelia. The amount of pain and suffering that this little guy has endured, and will endure, breaks my heart. Through this blog, and a little help from a dear friend, this family in Oregon and I were brought together to support one another. I have a unique advantage in being able to help this little guy’s parents understand symptoms, treatments, prognoses, but also to be a sounding board, to try to offer advice on how to approach treatment options, and to be a source of strength and comfort whenever I can. We write, we speak on the phone, sometimes, we cry together, out of frustration and concern for a really great little kid. Today, this little guy’s dad wrote me a letter.

I won’t post the actual letter here. I want to maintain the privacy of our correspondence. Sometimes, words are too precious to share. What I do want to share is the reason for the letter.

Simply this, that they are grateful to have someone like me help them navigate this journey. That, because of the knowledge I can offer, they can (and have) saved their son additional pain and suffering. That it’s so incredible that a woman they have never met in real life could be so pivotal in helping them fight for their son. They think it might be God. They thanked me for being the messenger.

I cried in a way that I haven’t in a long time.

I don’t believe that I deserve accolades for helping others. I do believe that everything happens for a reason. If I am meant to live this life, with the challenges that I’ve been handed, so that I could make a difference in the life of a wonderful little boy who has his whole life ahead of him, then I accept my fate with *gulp* gratitude. I have always refused to feel sorry for myself. I refuse to be a victim to my condition. Because of what I’ve been through, I have the power to help others. That is worth everything.

A letter came today.

It opened my eyes to the power of reaching out and helping someone just because you can. That letter healed a spot in my heart that I didn’t really know needed mending. It brought me renewed perspective, it brought me some peace. It brought me news of a successful surgery and the hope of relief for a little guy that really needs it.

We need each other, all of us.

As Ever,

I’ll eat you up, I love you so.

Mustache Love, Redux: Continued Growth

On Sunday May 8th, I will bring Mustache Love to The Barrymore Theater in Madison, Wisconsin as part of the Listen To Your Mother Show.

I wrote Mustache Love after my daughter told me about being teased for having a “little mustache” at school. Earlier this year, I auditioned for the LTYM Show with the piece, was cast in the show, and am now preparing to unleash the love upon a live audience. Reading over the piece in preparation for the show reminds me of how a little blog post, on a lesser known blog, somehow turned into a movement of inclusion and would inspire a community to come together and stand vigil over a friend in trouble.

It began with a hashtag. My homey, @TheBusBandit, retweeted my blog post and added #MustacheLove to his tweet. The response to the blog post was huge, both on Twitter, on the blog, via email, or in person. So many people showing the hairy-ass love, and sharing their own versions of #MustacheLove. The mustache was different for everyone. For some it was their weight, others, bucked teeth, acne, height, skin color, the list went on and on. Everyone had a “mustache”. Everyone.

#MustacheLove became more than just a blog post. It was a common thread, a right of passage, the act of breaking free of what is “pretty” or “normal” or “handsome” or “good”. It was acceptance. It was courage. It was reminding each other that we’re all okay, just as we are. Because as grown as we are, we still forget sometimes.

Then came the mustaches. They came from everywhere. Mustache jewelry, mustache window clings, mustache pillows, mustache photos, a group of my running buddies ran a route in the shape of a mustache just to make me smile. In 2010, I needed #MustacheLove more than ever. I had two major surgeries, needed to ask for help more than I ever had in my life, and had to come to terms with a very different kind of “normal”. The months after the first surgery brought a roller coaster of highs and lows, emotionally and physically. Three months later, I needed another surgery. I talked a good game, but I was scared, pissed, and tired. I was gaining weight, I walked with a cane due to my deteriorating gait, and I looked sickly and shitty all the time. As much as I knew how to help my daughter deal with self image issues, I started feeling uncomfortable in my own skin. And I knew better, right? Sigh.

Then something happened.

I logged into Twitter the night before my second surgery to find that hundreds of avatars had been slightly altered. There, I found the usual faces of my Twitter feed, with one addition. Each one of them was wearing a mustache. A friend had created a Twibbon that overlaid a wickedawesome mustache over all of their beautiful faces. That night, #gosarago was a trending topic in Milwaukee. It was a glorious mustache vigil that I will never forget.

On Sunday, May 8, 2011, I will read Mustache Love to an audience of hundreds. And it isn’t the same Mustache Love that I wrote almost a year and a half ago. The words are the same, with some small additions and edits, but it feels different. When I talk about the day I made the decision to let my own (impressive, btw) facial hair grow (for 6 months) to show my daughter that good people will love you no mater how hairy (or heavy, or buck toothed, or pigeon toed…) you are, I won’t just be thinking about the good people who will love you in spite of your mustache.

I’ll be thinking of all the people who will wear one for you.

A thank you letter that will never be enough.

I’ve been struggling with a way to sum up this past year in one perfectly wrapped year-end post, all tied up with ribbons, nice and neat. I’ve begun this post countless times, always trying to find the best way to convey to all of you exactly what this year has been like. I have wanted to share with you how much your love and support (and mustaches) have meant to me this year. But it’s been a complete waste of time. I could never sum up what I have taken away from this year in one pretty post.

This year wasn’t pretty. This year was hard. It rocked me to my core. I am still fighting to reclaim much of who I once was, rebuilding pieces of who I want to be, and learning to make peace with the loss of things I can’t get back. Throughout this year, I felt an incredible range of emotions, from anger and fear, to acceptance and gratitude. The one thing I never felt was alone. In so many different ways, your tweets, your emails, your offers to help, your prayers, hugs and smiles, you guys helped me navigate through this year with hope and gratitude, and some days, maybe, just a little bit of grace.

Some of you, and you know who you are, sat at my bedside and held my hand. Others held my children, and made sure my family was fed. Some of you, without being asked, just kept showing up. It is something I will never forget, and those acts of kindness will shape the way my children live their lives and how they treat others. We are forever changed because once upon a time, a girl fell down, and an entire community came together to pick her up, dust her off, and carry her awhile until she could walk on her own.

I cannot think of any words of my own to express what I feel when I think back on this year. More than anything else, the thing that resonates most was more than just never feeling alone. You made me feel protected. Protected. That’s huge. It meant more to me than you could possibly know. There were times when it was harder than normal to pick myself up and get through one more treatment, one more hospital stay, one more fucking MRI. It’s those moments that I don’t talk about. I don’t tweet about them. Those are the moments that I have to dig deep. I have to forgive myself for feeling so weak, so sad. I have to pull it all back together and remember that my life is beautiful, even if this moment is not.  I remember earlier this year, sitting in the quiet, listening to this song, it made me think of all of you. Loving me, protecting me, never letting me stand alone, and I thought, “This is going to be okay.” You did that. I am forever grateful.

Timshel, Mumford and Sons



Thank you, for everything. I’ll eat you up, I love you so.

Unfixable

For a long time I have been trying to figure out how to explain how it feels live with chronic illness. Every time I do, I wind up pissed, and sad, and to be honest, I just don’t want to talk about it any more. Most people want me to say that I’m doing super, just really, really super(!). I get a lot of “Are you all fixed up now?” They want me to say yes. If I don’t say yes, they are confused and maybe even upset. “But you had brain surgery! Didn’t that fix you?” Most times I just say, “Sure. All fixed.”

But it doesn’t work that way.

The goal of treatment for Chiari Malformation, Syringomyelia, and Tethered Cord Syndrome is to stop the advancement of deterioration and nerve damage, to try to decrease frequency and severity of pain, and try to achieve a better quality of life. It’s not something that can be fixed, per se, it’s a condition that can be treated, with varying success rates. My surgery and treatment was only partially successful, and I continue to progress. The problem with that explanation is that it bums people out, apparently. Then I find myself feeling like I need to make them feel better about it. So I make jokes. They laugh. Everybody moves along. This happens over and over. I explain it, people get all bummed out, I crack jokes. Except some days, there’s nothing funny about it. And I get tired of making other people feel better about my condition.

So, today I want to tell you that it is perfectly okay with me that my life might be harder than yours. This body is not perfect, but it is still here. It produced my life’s great work, my daughters. As long as I am here to be their mom, and to be Augie’s wife, I will respect this body, and I will not dishonor it by feeling sorry for myself. Every single day that I live, the good and the bad, there is someone who would give anything to have that day. There are people, some, heartbreakingly young, fighting for their lives every day. Some of them will not see tomorrow. When you feel like you need to pity me, please think of them, and re-think how you look at your day. I am not fixable, and yet I am sincerely grateful to be here. Please be grateful with me. Please try to understand that any improvement from my treatment, no matter how small, is a miracle to me.

If you see me falter when I walk, offer me your hand. If I cannot recall the name of something, offer a suggestion. If I cannot be with you because I am in pain, offer me your understanding. If I am feeling overwhelmed, and tired, and sad, offer me a beer and a kleenex, and for god’s sake, make me laugh until I pee my pants.

Just don’t feel sorry for me.

I spent a long time hiding all of this from all of you. I’m tired. I want to be me, just as I am. I just don’t want you to be all bummed out about it, mmmmkay? I don’t know exactly what the years will bring for me. I do know that I’m not going to sit around worrying about it. Whatever this body has in store for me, I’m ready to figure out how to work with it. It will very likely be totally fucking awesome.

So that’s it. I promise to be brave, if you promise to be okay with all of this, be okay with me, just as I am, unfixable (and unstoppable, suckas!). Wut.

And also, I’ll eat you up, I love you so.