Brain Surgery and Being a Hydro Warrior

On February 3, 2016 my world forever changed. I had brain surgery because I was diagnosed with hydrocephalus.

I do not talk about my diagnoses much because I don’t want it to to define who I am, but recently I feel as though many could relate to what I am going through, and I don’t want people to feel alone.

I started a new job last week, one that I have absolutely fallen in love with; however, it is hard work and for the first time in two years, I have to drive into an office and work eight straight hours. At my previous job, I could work from home almost every day and work at all hours of the day; just as long as the work got done. It was my second day at my new job, and I got into my car and just started bawling. I cried the entire one hour and thirty minutes it took to get home. I was not crying because I didn’t like my job, or because traffic was terrible (which it was), I was crying because I had a terrible headache and I had this headache all day.

I remember when I first started having these terrible headaches. I had just started at Thomson Reuters; I was sitting at my desk, and I said to myself “I think I am going to to go to the Urgency Room and see what’s going on”. I left work, went to the Urgency Room…and, well…this is where everything started.

The doctor advised that it would be best to get a CT scan and I was so embarrassed because I did not think it was necessary. By the time I was done with the scan my mom had arrived and we were just sitting in the room waiting for the results. The doctor came in and grabbed a chair and I knew something was wrong. If nothing was wrong why would he get comfortable? He said that the CT scan results came back abnormal, and then I just looked at my mom, and she looked at me, and then everything in the world just sort of stopped moving; the only thing I could hear was the beating of my own heart. Then I heard him say tumor and I snapped back to and I said “what…what did you just say”? He said, “You need an MRI ASAP, because we are unsure what your results indicate; it might be a tumor, but at this point, we are unsure.” A part of me just wanted to start laughing, a part of me just wanted to cry and a part of me just wanted to crawl into a black hole and not come out.

I went and got an MRI the next day and during the MRI they stopped midway through, pulled me out and said, “have you had any recent head trauma? Your brain ventricles are very large.” NO, GOD DAMMIT! At this point I was sick of people telling me things that were not an absolute, you know? The MRI results showed that I had enlarged brain ventricles which indicated that I probably had a condition known as Hydrocephalus.

The next day I got a phone call from my doctor and they told me to go to the hospital and have a spinal tap performed. So, that’s what I did, and when the spinal tap was being performed, the ER doctor tapped my spinal column….ohhh about five times and missed. I went to radiology for the sixth and final attempt at a spinal tap, and after the fluid was released, I had relief of my headache. It was at that point that the doctors knew I had hydrocephalus. However, since my spine had been stabbed so many times, the next day I had a spinal tap headache. I then had to go back to the ER and get a spinal patch.

I was diagnosed with Normal Pressure Hydrocephalus. At first I was like, okay…so what medication can I take? Just give me whatever I need and I will be on my way. Nope; that’s not how this monster works.

  1. Hydrocephalus is treatable it is NOT curable
  2. Hydrocephalus is only treatable through BRAIN surgery (only 30% are the patient’s first surgery to treat hydrocephalus)

I met with my neurosurgeon and he reviewed all my scans, and basically my entire life history, and when we sat and looked at my brain together, he turned to me and said, you need brain surgery; you need the surgery so we can insert this shunt and allow CSF to flow freely again. Your brain is pushing against your skull, and your ventricles are very enlarged. If you don’t have surgery things will get much worse, very soon. Then he threw in…I will also be shaving half your head.

So, there I was. Sitting in this office with my dad and my neurosurgeon; they only thing I could fucking think about was this guy shaving half my head!

I was scared, shit man, I still am scared. After that meeting I drove home by myself, and I thought about death, and how my life was going to change. I don’t think anyone really knows that feeling unless you have been put in that position to feel that feeling. I was at my most vulnerable, but I was okay because I knew that up until that moment I had lived a great life and I was loved. You know, I knew what it meant to be truly grateful.

The day of surgery I tried to remain calm because I knew if I was freaking out then it was just going to create chaos around me. In my head I was thinking…today someone is cutting into my brain, MY BRAIN!, they are inserting a foreign object and I have to live with this shunt for the rest of my life. They took me back and I was so nervous and they gave me happy meds…and then I was out. I woke up, and I remember asking for dilaudid. I was alive…I made it.

I spent four days in neuro ICU and my family was always there. That’s really all I remember. My family…and my hair missing. Let me tell you something, my family are some of the strongest people I know. Yes, hydrocephalus impacts me and I stress out everyday from the impacts of it, but my family stresses out, too, but they do not give up on me, some have and that’s their choice, but my true family has never left my side. I love all of you, more than you will ever know.

It’s coming up on my two year anniversary of my first brain surgery. This has been the hardest two years of my fucking life. I still have headaches. I have headaches when it’s cold, warm, sunny; when it rains, snows; when it’s humid, when it’s perfect outside. I have a headache right now. I am scared that when I have a bad headache it means that my shunt isn’t working, and I will have to have another brain surgery to fix the issue. I am scared that no one will ever love me again because my brain parts are broken. I am scared that I will die on the operating room table if I have another brain surgery. I am sick of doctors and doctors appointments.

I hope for a cure for this condition. I hope for a cure for all illnesses; no one should suffer, but if you are, know that you’re not alone and know that you are fucking valuable.

JV

Girlfriends

I had dinner tonight with an old girlfriend; someone I didn’t think I would ever see again. It was so good to see her. I met her at yoga teacher training almost four years ago. I miss yoga. Fucking headaches.

The thing I am understanding about friendships right now is that they are more meaningful than ever before; the conversations I am having mean more, the laughter I am experiencing is meaning more, because not only was the break-up with Jake a traumatic experience, I also had brain surgery and as much as I want to admit that it didn’t have an important role in my break-up, it did. It was a seismic event that shook me and my families belief in a just world; robbing us of a world that is controllable and predictable. I need to understand that at any given moment my life can change and I need to experience ALL this life has to offer.

  • I need to learn to accept that being alone is okay. There are many successful women who find great joy in not having a man (They’re probably so joyful because they don’t have a man…amiright?).
  • I get asked all the time “what are you passionate about?” and I cannot answer that question. I smile and say “dogs.” This break-up from Jake, while heart-breakingly painful, will give me the chance to really reflect on all things Jess. It’s going to allow me to be selfish and to do whatever the hell I want.

My heart is slowly starting to heal and it isn’t because of some man; it’s because of my girlfriends like Christen and Laura, who prove to me that women are resilient, and we find joy and happiness in our own outlets, we just have to know where to look.

JV

I Can Feel it Comin in the Air Tonight

Slim Pickens¬†as defined by Urban Dictionary, when there is a lack of the opposite sex around. What I like about Urban Dictionary is they always put the word in a thoughtful, yet, appropriate sentence; you know, so you fully understand the meaning of the word. damn dawg it is slim pickens tonight, where are all of the hottiemonjaros? If you’re curious as to the meaning of a ”hottiemonjaro,” I will let you google it.

In a previous post I said I wasn’t going to join a dating site; well, I lied. I joined good ol’ Match.com. I joined not because I want jump right into another relationship, because I do not, but because I want to meet new people and have some fun. I am 32 dammit, how else am I supposed to meet people?

Perhaps I am trying too hard to find a suitor, but at least I am putting myself out there, you know, I am trying. To entertain myself and to shed light on things I might be doing wrong, I decided to brush up on my dating etiquette compliments of Match.com and Eharmony.com. Both very interesting reads from people who live and breathe all things dating and have encountered more than one neurotic lady. I give you a list of rules that I am repeatedly breaking:

1. Talk about your past relationships. This is a big no-no. If your last boyfriend is all you can thinking to about on a date, perhaps you’re not quite ready to date yet. Take time to get over the last relationship before embarking on the next one. I am very much guilty of this, not so much talking about my ex’s but thinking of them and wishing I were with them instead of being out with said potential suitor.

2. Put out on the first date. If the chemistry’s right, sparks may be flying. You may be tempted to make that first date a sleepover. It’s not the end of the world if this happens, but you’re really interested in this guy, rein in your libido and date smart. Get to know him better before you get in the sack with him. I have never slept with someone on the first date but I have on the second date. I have learned, after two failed “sexy time on D2”, to not give up the cookie so quickly; giving up the cookie too quickly leads to disappointment, broken dreams and lackluster results.

3. High Heels. Guys love gals in sky-high heels, but wedges don’t count. Wait, what?!

4. Height preference. The dating guide details a study where 77 out of 79 women admit they wouldn’t date a man shorter than them. GUILTY! I am 5’8 and I would prefer not to date a man who is vertically challenged, after all, I wear three to four-inch ‘wedges’.

5. Strike a pose. I have isolated the problem. Note to self: Must pose more.

6. Tardiness. Per the dating gurus, this sends out a negative message. BUT how am I supposed to make a grand, perfectly posed entrance if the guy isn’t even there?

After reading the dating guides written by the dating Gods themselves, I am doing a few things right. I like to smile lots, I am proactive, enthusiastic, and, most importantly, myself. According to Eharmony and Match other attributes include: tousled hair, smiling lots, not wearing really tight pants or ordering spaghetti (which I would because I am Italian) and, last but certainly not least, not jumping too quickly into sexy talk.

I will be the first one to admit I have a number of things to work on. I am sure if you polled the most important people in my life they would probably say I am in need of an attitude adjustment. But, let’s focus on the good things; I smile lots and I don’t settle.

I might also be looking in the wrong places to meet said perfect suitor. Not so good spots to meet a man: the gas station, the DMV, a rap concert and weddings. Really awesome spots to snag a tall drink of water: Lake of the Isles, a Lord Huron or Bon Iver concert, Target Field, BlackBlue…so I think it is time to set up a booth at one of these fine locales and prowl for potential suitors. Inquiries may or may not include:

1. Would you consider taking a yoga class?
2. Do you own any Affliction apparel?
3. Do your friends love you as much as you love them?
4. Do you wear socks with sandals?
5. Please describe your talents in spider killing.
6. Do you currently posses a selfie with a large fish?
7. Describe your relationship with your family.
8. When was the last time you visited the dentist?
…but I shall not limit my scope too much.

Yes, I did just get dumped, but I had a wonderful weekend with my sister from another mister, and I am currently obsessively listening to NEEDTOBREATHE and Foy Vance, paging through some very helpful self-help books, which includes a chapter that begins with “Well Fuck”, I mean…who wouldn’t want to read that, loving my job and my team, figuring out to love working out, dreaming of my Italian get-a-way with my parents in September; I should be, by all accounts, blissfully happy but something is missing – I am missing that piece to my puzzle.

Despite my tendency to be a tad anxious and needy, I am blessed with wonderful friends, an AMAZING family, and a job with wonderful co-workers. I am taking a slight repose to strip myself of pre-judgements, common dating mistakes (high heels instead of wedges), and empty calories I am consuming in the twix and kit kat bars I seem to always find myself indulging in. After I figure out what Jess really wants, I will return ready for my next adventure in the quest to find the ultimate partner with whom to share a bountiful life.

Until then, I will be playing Phil Collins and rockin out to some air drums.

JV

Blue Ain’t Your Color

There are not enough adjectives to describe the amount of fun I had over the 4th of July weekend. All it took was my best friend, her cabin, and two small town bars for me to say Jake…Jake who?! When bow tied beckoned philosophers say laughter is the cure for almost anything; specifically a broken heart, they really are speaking truth…well laughter and whiskey let’s not kid ourselves here.

It was a colder day in Siren, WI and we went up to the nightly meat raffle – yes, meat raffle; although a strange tradition, it is quite fun and I won! My first time and I won the meats! After sitting at the bar chatting with the locals and the bar owner, Shannon, my best friend leans over to me and says, “Jessay…isn’t that Mr. Klingsborn”. I was like WHAT? What did you say?! Then I looked at this guy and I was like…excuse me sir, are you Mr….did you teach at Tartan? Then he put his head down in shame and then said “yes, it’s Mr. Hickey”. Then L and I looked at each other with excitement and screamed Mr. Hickey!!! As if he wasn’t already shamed enough, we had to yell in excitement. We have not seen this guy in about 15 years; he looked exactly the same. How strange, right? Running into your high school physical education teacher in a small town bar. If you think the weirdness ends there….you’re sadly mistaken.

The next day it was finally nice out…sun was shining and it was WARM! We took the pontoon out and it was glorious. As we were driving around Clam lake, drinking, enjoying being free…we hear a noise “dummm dummm dummmmm” the engine just dies. “welp, we ran out of gas”. So, there we were…just sitting there, and being me I start calling places with the words “gas” in the name. Then I am the one getting yelled at because I am asking where on the lake we are. “I don’t know nautical directions, Jessay!” Then I was told I am too sensitive, then I didn’t talk for awhile. I am not sensitive! Well, I am…I was just trying to help! Who runs out of gas, though, seriously? Some nice gentleman and his family saved us, but the entire ordeal took about two hours and we ran out of booze right before it happened.

As if the day wasn’t already a wee bit stressful, we go up to Jeds the other small town bar; there are only two. We ordered our drinks, sat outside and L told me a story about her youth, it was probably the only time I was not with her, and we belly laughed for about 10 minutes straight. We ordered a pizza and then this horrid music started playing. This awful heavy metal music and then Sinead O’Connor…Nothing Compares 2 U; are you singing? I had to leave the bar because 1. Sinead made me miss Jake and 2. I cannot listen to heavy metal.

We got in the car and L said, “alright what do you want to do? Should we go to the cabin? Go to Gary’s? Go to The Narrows (the other bar)?” So we went to the Narrows (The Narrows is where we saw our high school gym teacher).

We show up at the Narrows and it was empty except for some really drunk locals, but there was a bonfire and that was pretty neat and warm. We ordered some drinks and then sat by the fire…and then things got real weird real fast. So, these two guys show up on their custom Harley’s, then some other guys show up, and then L and I find ourselves intertwined in toothless hillbilly hell, literally. I didn’t know where I was for a good majority of the evening.

Anyway, as I am sitting co-mingling with these hill people, this attractive man drives up to the bar in this really nice truck. My eyes follow him from the moment he pulled in, to the moment he sat his butt on the bar stool. I just stared at him, probably with my mouth open and drool coming out. He was so attractive…scruff on his face, shaggy hair, sweatshirt, ripped jeans…just a mans, man. He was drinking Coors Light…but I let that slide. I ¬†mean, not everyone is perfect.

I go to the bathroom and Shannon, the bar owner, was in there and I cornered her. “Shannon! Who is that attractive man at the bar?”

“Which one, the one with the gray sweatshirt?”

“Yes!”

“Oh, he’s married darlin”

“FUCK! No!”

I go back out to the fire feeling defeated and I make eye contact with Lola, “he is married” and then start fake crying. Lola being the little spark plug she is, went to the bar to order more drinks and she sat and talked to this fine, attractive man. She talked to him for about 10 minutes, leaving me in my own personal hell with these other…men. All of a sudden, I hear Lola say, “Jessay, it’s T!!!” I literally almost fell out of my chair and I ran to him and he gave me the biggest hug. I have not seen this man in 17 years. Let me tell you something about T, he was my first love…my first, you know. HOW FUCKING WEIRD IS THAT! I started crying when he hugged me. I could not believe it.

So, there were about five of us that stayed up until 5am at the bar. Singing, dancing, talking, laughing. T played this country song, and I hate country, but he played Blue Ain’t Your Color by Kieth Urban and he put his arm around me, sang to me and rocked me like a baby. I cried. These tears were cathartic tears. Almost as if I was letting Jake go through my eyeballs, and T was helping me. T was there at the exact moment when I needed him to be.

This past weekend was more than just booze and ghosts of boyfriends past. It proved that I am going to be okay, and that I am a smart, successful, beautiful woman and I don’t need no man. It’s time to focus on what Jess wants.

T, if you ever read this, thank you.

Day 8

I was dumped eight days ago. Seems like forever. I worked out today and I just started bawling as I was doing donkey kicks. You know, that ugly cry. Headphones on; “you son- of- a-bitch, you said you loved me six fucking days ago!” Then I laid on my back and started laughing because I just thought that working out was supposed to release good endorphin’s; apparently it was just making me bi-polar.

I digress…

I had a different blog many moons ago about the wonders of online dating. I looked back at it and laughed, but also remembered how awful online dating really is. I told my best friend the other night – NEVER AGAIN. Not ever. Never, ever.

There was a part in one of blog posts that is still very much apparent today…right now:

“In the dear, sweet, verdant land of 10,000 lakes, I’m slowly sharpening my belief that the smart, handsome, passionate, cultured, hilarious (without being mean), single thirtysomething Twin Citian gentleman is near dinosaur-like extinction. But, on the hopeful, sunshiny days (like today), I stay true to my belief that if I am patient, open, kind and smiling (I’ve been told I have a nice smile), I will one day tap my toes and Mr. Wonderful will be there at my beckoning – equipped for my neurotic personality and my hard to handle ways.”

I am tapping….where is he?!

What I am finding out about heartbreak is this; I am so desperate, so out of control that I am being forced to transform my life, and I am. My heart is literally breaking open so new light can get in. I am being torn apart so another layer can be reveled; a better layer. So, I am thankful for this heartbreak, because it was planned. It was planned to make me stronger and better, but I hope I never lose the bruises that were left behind.

Until tomorrow,

JV

Broken

I went to work today. For the first time in about a week; I got up, put on make-up, pretended to care. I tried to silence the violent noise in my head (“it’s not over”, “it ended too quickly”). I put on a performance, I put on a show today – slapped on a smile, made it work.

The one person I wanted to love me stopped believing. He literally just stopped trying. When I was hiding, he could always find me and now, when I need him to find me, he won’t; I am lost and completely heartbroken.

When someone tells you that they don’t love you anymore and they haven’t loved you for a long time, no words can describe that pain. Just like, holy fucking shit…the love of my life, whom I love with every ounce of my being, doesn’t love me back. He just told me this in a fucking text message that I get to read over and over again. It’s as if someone grabbed the sharpest razor and just started stabbing me over and over. Like Season 6 of Game of Thrones when Jon Snow was being stabbed to death, and the final stab by Olly – “your watch has ended” – only for me it was “your relationship has ended”. Looking back, he put on the performance, he put on the show.

jonFuck, man, I really hope I can love again. People are telling me “it will get better, you will get over this and be stronger”. It’s so hard for me to comprehend because we went through so much together. I had brain surgery, we traveled all over the world, we had two dogs that we loved so much…just like…shit (I mean, not like poop…but, you know). We just went through so much and it’s over…so over.

That’s all for now.

JV