Saturday, January 10, 2015


Yesterday I was leaving the hotel to go out with my mother during the day. We walked out the front door and I held the door for a man that was coming in with his suitcase. He walked in and I let go of the door, he stopped, caught the door, turned around and said, "Chelsey?"

I have never seen this man before. My father is having a conference here at the hotel, so my first thought was that I may have met him once before, but I don't recognize him. I glanced at my mother who looked as though her claws were out in case this man was after me.

I nodded my head gently. He seemed to notice that encounter was a bit strange. "Sorry, I work with your father. I've read all about your story going through brain surgery from what he had posted online. I recognized you from the pictures."

"Minus the gauze wrap around my head," I said smiling.

"That's right. You are very strong and courageous for going through that and I hope all is going well. I hope to talk to you when I run into you later."

I thanked him. I thought to myself, wow I am popular!... But more seriously, the thought of others thinking about me as strong and courageous makes me realize how life changing the whole experience was.

To read a few of my father's Facebook updates on my surgery, search #curechelsey14 on Facebook.

Wednesday, January 7, 2015

Back to Reality- Traveling

Today I took a flight for the first time since the surgery. I am mostly looking forward to relaxing in the warm weather of Florida instead of being freezing cold stepping outside in New Jersey. I am feeling like a real person more and more. Traveling is a big part of my life, as it is by far my #1 hobby. I'm waiting until the day I step out of the country again. 

Being in the warm weather will give me the freedom to do things that I haven't done since the big change. They may seem small and unimportant to most, but they make me feel like I am really getting back to being myself. Spending time outside is what I need most. I just want to go for a long walk on the beach bending over to pick up shells and taking a dip in the ocean. Exercise is something I've been craving. I know I'm not ready to run or play soccer yet, but going for a long walk outside will feel amazing. Coming home from the hospital, I was excited to walk up and down the driveway, a week later I was excited to walk around the small block with a dead end, and each day I went for a walk I would stretch it a bit further. But it being freezing cold out is not enjoyable when wanting to walk for a few miles, especially with the thought of slipping on ice. 

I remember the first time walking outside when it was freezing after surgery. Granted, I was a bit overly cautious still learning about the RNS but when my head got cold, the first thought that came to my head was "I have metal in my head, can I be outside in the cold with that? Will it freeze quickly and ruin it?" Looking back, not my brightest questions; after all it's inside my warm 98.6 degree head. 

Exciting as well, I look forward to the pool and ocean. The only water I've been in so far is the shower. To me, slightly boring. Getting to swim a bit is definitely something that puts a smile on my face. I did promise my head would be covered while lounging in the sun. Don't want to disturb my still slightly scabbed, yet healing lines on my scalp. At least I get to wear my favorite oversized sun hat to come off as trying to be stylish!

Interesting side note at the airport. I had a feeling that it may be difficult to explain my reasoning of why I can't go through the metal detector. Who else has a metal mini iPod looking device in their brain or who has even heard about this RNS device? I surely hadn't known about it before it being discussed the week before surgery. I figured I was a bit strange. 

I got to the security woman checking IDs and plane tickets. I began to explain holding out the card Neuropace sent me, "I have a metal device in my head, and because of this I-" 

"Put your things on the belt like everyone else and when you get to the detector, tell them you cannot go through for medical reasons. Have a good flight," she said. I smiled knowing that I'm not too out of the ordinary having metal inside. I put my belongings on the belt and went over for my first pat down. 

Though I'm still experiencing seizures, I am looking forward to a warm, relaxing getaway and another step towards my real life.

Tuesday, January 6, 2015

New Looks: Post Surgery

Looking in the mirror after the second round of surgery, my eye looked a bit squinted like it was pulled too tight and then stapled. This didn't bother me an ounce, I was just happy I looked like a person and could see out of both eyes coming out of two rounds of surgery on the top, side, and back of my head. The doctor had told me at one point there is a bit of swelling which is natural while healing, but it will go down.

He was right. About 2-3 weeks later my eyes looked back to normal as I really began to feel normal in general.

About 6 weeks after surgery, I went to a musical in the city with my family. I decided to bring my glasses with me because sometimes I need them for details in the distance and I wanted to capture it all while watching. I realized this was my first time putting on my glasses since before surgery since I didn't want to poke the area that had the scar in front of my ear, and then once that area was healed I just hadn't needed them. I had just kept them in a hard case in my bedroom to make sure they would be fine and I didn't ruin them.

Quick flashback: When I bought my glasses about a year ago, I put them on and they were crooked. I have always had trouble with glasses looking crooked on me. Sunglasses, eyeglasses, cheap, expensive, always crooked. The person helping me in the store had to take them to the back at least 5 times to melt the part in the center and bend the glasses to at least appear straight on my crooked ears.

Back at the musical, I take my glasses out and put them on to watch the show. Completely crooked! They've been in a hard case and haven't been touched in over a month. How is this possible? I wore them anyways so I could see the show, took them off at intermission because the lights turned on, and popped them back on when the lights dimmed.

When we left the theater walking down the street, there was a little touristy market that had tents outside. I saw a ton of sunglasses and insisted on trying a few pairs on to see what is wrong with my ears now. I grabbed one pair, tried them on, perfect fit. Took another, tried them on, perfect fit. Never have I tried on glasses and had them sit straight without serious bending.

My ears are now perfectly straight. Thanks, Dr., for being a perfectionist stapling me up making sure my ears are symmetric. Went into surgery with the thought of coming out with possibly a few small strange changes in my looks, came out looking even better than before. Bonus outcome to brain surgery!

...I wonder if I will ever need surgery in my gums at some point. Maybe my crooked tooth will come out perfectly straight...

Thursday, January 1, 2015

Crazy Hair- Don’t Care: Post Surgery

So I’m at the Epilepsy Center getting a post-surgery checkup with my surgeon- the most amazing doctor I have ever encountered, and I am thrilled repeating that every time I mention him- and he tells me he will begin taking out my staples. I’m a bit on the edge because I have never had staples before, but one of my friends who is a nurse told me that getting staples out is not painful at all, so I can handle this.

Dr. D, the best of the best and genius of all geniuses, first told me, “usually A-name [the main nurse practitioner and Dr. D’s assistant, also an amazing person] takes the staples out but she’s very busy at the hospital today so I am just going to do it this time,” as I recall him digging through the drawers for the “regular pliers.” Clearly, not his usual routine. Has he even removed staples here before? What is going on?!

he comes over with the pliers and I flip my hair to its old natural part instead of how I changed it to hide the scars and Dr. D starts in the spot that has been a sore spot in general and my eyes start tearing up. This isn’t painful at all??? It hurts!!!

Then he asked if I felt pain after I shouted, “OOH! That one hurt!” What do you think my response was with tears forming in my eyes? “Eh, it pinched a bit right there in that spot,” as if I am a champ… I did just have my whole head opened up, my skull removed and put in the freezer for 5 days, my head closed up with a staple gun (that most people use on the wall at work) with wires coming out of my brain, my head opened again with an extra opening this time to put in the iPod sized technology implant, a piece of my brain removed, and then got closed up with about 60 staples to heal well… so no big deal. Just removing 60 tiny staples from my healing head today. I can handle this.

Dr. D said to me, “This spot is a bit sensitive on your head because we had to do the extra cut and all the openings come together at this one point, so it may be a bit more sensitive there.”
Ok, so it’s worse in that one spot, that’s good, so maybe it won’t hurt as much in the others… but a BIT more sensitive with 58 more staples to go?! Jokes, right? As he moves further away, the pain does die down extremely and I let out a few sighs of relief. The last part I have left is the 7 on my left sideburn line by my ear (attractive, I know). Before Dr. D, the brilliant man, begins right there he casually tells me, “just be aware I am doing the side here and the majority of people with this tell me this part is the most painful of the staple removal process.” MORE PAIN THAN BEFORE?! What was my nurse friend talking about this zero pain on staple removal?
I calmly replied, “Alright, let’s just get it over with.” I felt the chilly metal plier-like tools on my sideburn line and began gripping my thighs with my knuckles turning white. He took the pliers off my head and put them back on a bit underneath and repeated again and again.

Dr. D tapped the side of my face 3 more times. “Is this side painful at all with the removal?”

Whoa. Wait a second, “You removed the staples on the side? I didn’t feel a thing! I thought you were just trying to make sure the pliers were in the right spot!”

“Yes, they are all out. That is usually the most painful part. Glad you didn’t feel any pain!” says Dr. D, the neurosurgeon of the century, seeming a bit confused about how I felt nothing. At least he’s the most positive person ever, enthusiastic I didn’t feel it. “Well, let me tell you, you’re healing looks fantastic. There are still some scabs on the lines and they are still raised some, but this is part of the healing process. These scabs will be falling off regularly so make sure you are still washing your hair well and gently. The raising will go down eventually as well. Looking great though, I am very impressed.”

Well could that news be much greater? I look fantastic and impressed the doctor of all doctors! Sticking to the title of the Champ today. So my dad whips out his phone to continue his over the top documentation of everything that goes on during this surgery process. He asks me if I want to see, and of course I do! I can’t ever see the side, top, and back of my head!

He hands me the phone and my jaw dropped. “What?! I’m missing this much hair?!?!” I didn’t know this much got shaved off! I thought I had 3 thin lines missing and that’s why I switched my natural hair part to cover it up. Literally I have a patch about 4 by 4 inches shaved from the top of my head along with the thin shaved lines.

“We unfortunately had to remove more hair than originally planned because we decided to implant the RNS. We kept it as minimal as possible,” Dr. D explained.

I paused with my over the top instinct response once Dr. D said that to me. I remembered coming home from the hospital and the next day removing the gauze-like head wrap I was wearing so I could wash my hair. I remember the first thing I noticed when I took it off was this tiny thin perfectly braided bit of hair on my left side above my ear wrapped up tightly in a bright blue long rubber band. Dr. D had taken that extra time during surgery to care about saving that thin string of hair to help cover up the scars once surgery was over because he knew how much I wanted my hair. Here I am frantic about this glob of hair missing on top of my head, yet that memory of the braid had shortly slipped away. Dr. D would do anything possible during this process to keep me looking as much like myself and healthy after surgery. Reflecting on that little tiny braid and how kind and caring and particular this one of a kind doctor made sure his work was perfection, I immediately became absolutely careless about what my hair now looked like. I couldn’t be happier. 

I’m looking forward to the day my hair grows back about an inch just to stick straight up through my long hair. It’ll remind me again of the success of the surgery every day I try to keep that crazy hair under control getting ready to go out during the day with a smile on my face lacking the fear I’ll have my old regular daily seizures.