Wednesday, August 17, 2016

Grateful

I'm back today partially through guilt but mostly inspiration. Some friends and, dare I say, mentors have taken to sharing very thoughtful blogposts filled with reflection and genuine thankfulness to what they are grateful for. Truly heartwarming.

After my admiration of all they opened up about, I started thinking about myself like all narcissist assholes (all humans) do. This is not my day to be inspirational. This is not my week or month to be anything but a needy bitch. Only problem is... I'm wrong. I built that story because of some hard times making me feel like I'm losing my mind. I built that story. But it's just a story. 

Truth is, I'm happy. I'm lucky. I'm finishing this iced coffee and glancing out at the streets of NYC. I'm Grateful. I'm mostly grateful for the people. Take a minute to think through all the amazing people in your life that influence you in various ways. The kindness they provide. The knowledge and enlightenment they gift you without even knowing it. The adventure and exposure to experiences you never imagined. The people in my life literally keep me alive.  I've somehow lucked or loved my way  into a life scenario where I'm constantly surrounded by people I care about and admire. 

Thank you ALL. For my friends from this land inside of blogging that have stuck around for so long and somehow built friendships I didn't know were possible. Dear Ben, I'll love you forever. My work, although frequently a huge pain in the ass, has provided me with close friends and mentors that have changed my view of the world and myself. The artists I've had the opportunity to work with and build loving friendships with have cared for me and taught me that my capabilities are far beyond what I imagined. We've created and contributed so much together. The friends that I've collected over the years at random because our souls just knew we were finding something worthwhile in each other.  My family who genetically is me in pieces. I couldn't be prouder of everything I share in who you are.  

Yes, this certainly helped. I'm filled to capacity with love and gratefulness. It was always in there. You just need to remind yourself of what is true. 

Monday, February 15, 2016

9 YEARS

Has it really only been nine years since my ramblings began? It feels like several lifetimes ago. It WAS several lifetimes ago. Several loves, several careers, several versions of me.  I've experienced a lot of traveling and gained wonderful friends bringing opportunities beyond my wildest dreams. Yes, every moment I've ever fought to stay alive has without a doubt been worth it.  That last line may seem dramatic but it's just helping me get to my point.

What has become of this blog over the last decade is now mostly just record of what happened to me as I developed and learned to deal with my epilepsy escapades. That wasn't my intention but it's what I needed. It helped me find a community to talk to. It helped me sort my emotions and find my own voice. Possibly of most importance, it remains here to help me remember. Having a neurological disorder I've found that my memory of what happens changes a great deal over time and sometimes I need the help be it good or bad. I'm really thankful for this snapshot of time that gives me pieces of myself I might not otherwise remember.

That all being said, it's about damn time I updated this thing and shared where I am as of today! I'm still awesome so that's good. I still love my job at MFF and I'm currently getting my VISA to travel to Russia this year. I've been sleeping with a beautiful man that's performing on the Grammy's tonight. SO HOT. I spent last week attached to an EEG with a battery pack and rainbow wires dangling like a unicorn mane from the bandages wrapped around my head. I had what I assume was a mild seizure during that time and my fingers are crossed that maybe this means they can figure out which part of my brain is misfiring. If they can do that, they can get me on a more effective medication and maybe, just maybe, I could be seizure free for a significant time. Maybe I won't sleepwalk anymore or wake up with a badly bumped head and bruised butt with no idea what happened. Maybe I won't spend a week crying for no reason while my brain tries to heal. Maybe I could have a relationship with someone that didn't require me watching the pity overtake their eyes when I explain how to help someone convulsing.

It's been nine years and even as of this week I really am filled with hope. I'm thankful for everything I have been lucky enough to experience. I'm happy. I am.

Wednesday, August 20, 2014

Am I Okay?

Last night I kissed my date goodnight on the steps to my building. Feeling a little fluttery with that sort of giddy feeling inside I took the elevator to my apartment. I grabbed my doorknob and a business card tucked inside fell to my feet. "Police Department City of New York Special Victims Squad Manhattan" It all comes rushing back.

A month ago I woke up naked in the back of a cab surrounded by cops asking where my clothes were.  I didn't know. I didn't know where I was, how I got there, what time it was, or if I was okay. The cops asked questions while we waited for an ambulance. I could remember what I had done earlier that evening and what I was wearing. Then the next thing I remember is that I was standing in the street and a guy was trying to kiss my face and telling me not to go. I ran for a cab. The cab driver thought I was crazy and wanted me to get out but I refused and rambled something about needing to get away. He drove a few blocks and the next thing I know cops are asking questions.

So I took the ambulance to the hospital and slowly started regaining full clarity. My doctor and counselor were wonderful and kept me calm. Everyone assumed I had been drugged and attacked. They started testing me for everything and administering a rape kit. It was 1:30 in the morning when everything happened and something wasn't adding up.  The last thing I remembered was hanging out at my local pub where there weren't a lot of people. I was talking to a friend and I knew the bartender. I only had a couple drinks and then went home. I was fine.

The officer helping me in the cab showed up at the hospital with the clothes I had been wearing. He was very happy to tell me that they broke into my apartment and my clothes were on the floor. Everything appeared to be normal so he brought my clothes, phone, keys, and purse to the hospital and that was it. They talked to the bartender and it appeared I had left and gone directly home before 11. Two and a half hours were missing.  The tests didn't show any drugs or anything that indicated I had been hurt. I was released from the hospital at 8am.

It's a strange experience to walk in your front door with no memory of leaving and knowing the cops were the last people inside. My TV and fan were on. All the lights were on. My lunch takeout from the previous day was gone but the container and fork were on the table. It was pretty obvious that I had been home the night before and did my usual routine of stripping out of all my clothes, having a little dinner while watching TV, and probably passed out.  Suddenly other memories come back.  I once woke up standing in the hall outside of my apartment and because the door locks behind me, I had to pound on the door of my super for the key. I once woke up at my old apartment knocking on my own door and my ex Sky opened it. "BABY! What are you doing outside?" Am I a sleepwalker

Since the incident I've talked to detectives, counselors, several police officers, several doctors. What we believe happened is that I probably had a seizure or due to my neurological issues started sleepwalking and wandered my way down the elevator, outside of my apartment, and down the avenue several blocks. The thing that triggered me to start waking up was a man trying to take advantage of a naked woman in the street that he probably assumed was on drugs. When he made contact by trying to kiss my face while putting his penis in my hand, I realized the danger and ran for a cab. It could have been so much worse.

I still can't believe this happened.

I'm okay.



Wednesday, January 29, 2014

Integrity vs Time

I’m really trying to focus on integrity. I want to be able to say that I’m filled to capacity with it. This means I do what I say I will do when I say I will do it.  I don’t struggle with this in a general sense so I didn’t think it would be so hard. Wrong.

Day 1) I woke up early so I knew I could get out of the door 10 minutes early so there would be no way I would be late to work. Integrity means being at your desk ready to start your job the minute the clock hits your start time. Turns out, Times Square was shut down and I had to take the train to a different station farther away and walk back. I was five minutes late. Attempting to work this through in my brain has been difficult. It’s the very first action of my new attempts with integrity focus and the failure was beyond my control. What now? Continue moving forward is all I can think of. 

Now I’m going to look through my work and really push to make sure I’ve done everything I said I would and have no guilt for being behind. DEEP BREATH.

Day 2) I took a cab because I was leaving a couple minutes late. Got caught in traffic and a 15 minute cab ride took 40 minutes leaving me both late and with $25 less.

Day 3) I left early again. The train was delayed due to a sick passenger. WHAT THE F*CK UNIVERSE?  What are you teaching me?


Time is so important in my life and it’s awful.

Tuesday, January 28, 2014

FIRST KISS

I suddenly just remembered my real first kiss.

I don't know how I forgot. Maybe because it was so awkward. I have no idea how old I was. Possibly twelve?  I was dating the cutest boy, Tyler. I remember how he smelled. I remember it disturbingly well. One of our friends was having a birthday party at the local Holiday Inn. We had all been in the hot tub and I was wearing a really hot little patriotic bikini with blue sparkles and white stars. The boys were leaving and somehow it got psyched up amongst our friends that we were going to kiss. I have no idea how this happened.  Next thing I know I'm standing in the Holiday Inn parking lot dripping wet in a bikini while my adorable boyfriend awkwardly leans in and all of our friends watch from the windows. We kissed on the lips and I was completely mortified by the show of it all. According to Facebook, now Tyler lives in Japan with his wife and baby. Interestingly he still looks 12.

Do you remember your first?

Wednesday, January 15, 2014

Life Updates

I don't remember writing that last post. I realize it was months ago but re-reading it was a little scary. I must block things out quite a bit.  It did, however, make me realize I need to get my ass back here more frequently in order to keep track of my life. So, here are some updates:

My job is fucking awesome. I love these people. As a lot of friends and New York family get engaged, married, knocked up, or move to other cities, I find I need more stability here and I have found some at my workplace. Who would have thought that was possible?

I mention my job because it's a huge part of my life and it segues into my epilepsy update. My last seizure was at a work retreat. December 7th we were all staying at a house upstate and enjoying a few days off together. Night one I chose to stay in a room downstairs by myself away from everyone else because I was the last to go to sleep and it was warmer.  I woke up in a totally different section of the house in an attic type space that was much warmer. I was the first up and went to take a shower. Upon entering the bathroom I saw my face in the mirror. It was covered in rug burns.  I started to realize what was going on.  I went back to the room I had fallen asleep in. The lamp was on the floor and the nightstand was thrown over.  To get to the room I woke up in I had to travel up very narrow carpeted stairs. I had a seizure somewhere and then fell down those carpeted stairs trying to get to the bathroom thus causing pretty gross facial injury that I'm still recovering from a month later.  That's all I remember.  I told everyone what happened. Later that afternoon I woke up from a nap on the couch and some coworkers were around. I could tell something was wrong. I had another seizure while napping. They must have been mild because I was fine and had a great time for the rest of the retreat. I remember nothing about them and I'm thankful for that.

Other than that shit, life is pretty good. I'm alive. That's nice. I've been reading and learning and trying to get better in general.   I've been thinking a lot recently about energy, neurology, and different planes of vibration. I think I might be a little off from normal in general. That might explain my last paragraph of my last post. Sometimes I feel I'm connected to something I don't understand but I hope to discover it eventually. Whatever the fuck it is. Ha, while writing this I remembered that in the beginning I used to refer to seizures as demons. Now I feel the complete opposite. I think that says something about where I am in life.

Must get back to that whole living thing now!

Tuesday, November 12, 2013

Latest Sparks

Hey blog, it has been awhile. I've had a lot of changes happen since we last saw each other. The biggest being that I hit the job lottery and life is pretty fuckin' awesome in that capacity. I'll come back to elaborate later because that's a cult post in itself.  I'm here now because, I miss you.  You're like an old lover. I miss you most when something bad happens and I don't know who to talk it through with. You will let me talk about it as much as I need without getting sick of me. Thank you for that.

So let's get right to it. I had another seizure. It had been about eight months since my last one and I was probably getting a little careless. Eight months is the longest I've gone since developing epilepsy in my twenties. It happened last Friday night. I think it was probably around 11pm because I was still up and walking around my apartment. I remember standing in front of my door, looking at my hands, and thinking "oh shit this is really a seizure this time" before blacking out. I usually am able to get to bed or the floor or something. Not this time. I usually remember most of the seizure and the pain. This time I only know that when I started to regain awareness I was cleaning a puddle up off of my floor and then going to bed. I don't know if that puddle was urine or blood.

When I was up again a little while later I was talking to my boyfriend very lighthearted. I think he thought I was okay but I was still out of it. I don't even know if we were texting or Skyping. At some point I felt my head and realized it was covered in blood. The hair was clumping up in scabs. I fell asleep again. The next day I got up, showered and cleaned my head, then went to rehearsal for the band. I know I thought I was okay at the time. I was having some sort of adrenaline rush. It was so strange. I went home that night and fell asleep early. Slept all Sunday. Monday I finally asked someone to look at my head. It looks like I collapsed on to the corner baseboard and scraped from my ear up my scalp. Then there are several other scrapes where I apparently beat it into the corner. Lot's of bruising all over my body and a strange numbness under my tongue due to nerve damage in my head. Frankly the recovery this time wasn't so bad. It's the emotional shit that creeps up on me days later that is torturing me.

What is wrong with my brain? I'm FREAKED out by my own weird behavior and things I talk about before the seizure. Why was I bringing it up out of nowhere with my coworkers? Why do people suddenly seem really familiar like I've known them before somehow even though we've clearly never met? Total strangers whose faces I know better than my family members. Why does it feel like my life is overlapping with other storylines and I'm getting caught in the deja vu blips? WHAT THE CRAP IS HAPPENING? Do you have any idea what it's like to lose large pieces of memory? What am I supposed to do when out of nowhere I get overwhelmed with panic and emotion but I'm not able to explain myself to anyone? I need to feel grounded and this is not the pathway.

Writing that last paragraph gave me a bit of a panic attack. I'm glad I still have this venue to release my insanity in. If I find out I'm in a sci-fi movie I'll let you know.