True Story: I had brain surgery

posted on: Sunday, 6 January 2019

My hair stylist friend, Bradley, was literally taken aback the first time he felt the scar. We've been friends for years, but I'd never called in his career as a personal favour. Having asked him to attend the British Fashion Awards with me, it seemed I was well within my rights to ask if he wouldn't mind helping me get ready. Bradley is a pretty big deal and he's seen it all in his twenty years of doing hair for big names in London. But, even today he'll freely admit that in this particular moment he lost all ability to compose himself and not act shocked. I'll never forget him saying, "I mean of all the things you tell someone as a friend, surely this is something you don't leave out." I simply responded, "at what point would it have been appropriate to randomly drop in the fact that I've had brain surgery?"

And I guess that's why today, dear reader, after 10 years of writing this blog I'm deciding to share this story. It's not an easy one to tell. It's not something that has any effect physically on who I am today and probably won't ever have any bearing on my health in the future. However, it 100% makes up who I am as a person today. At the age of 15, I was forced to confront a decision that no teenager should have to make and it has, without a shadow of a doubt, been the biggest blessing I've had in life. I'm pretty sure you're thinking I'm crazy at this point. Why on earth would brain surgery be a blessing? I'll get to that. Let's start with the basics. Why did I have brain surgery in the first place?

Let's flashback to 1995. 

It's scary how I can remember and playback each and every moment from this period in my life as if it were happening right now. But, I guess the most traumatic memories never really leave you. 

In late October, I was headed up to Annapolis, Maryland, with my family, to tailgate a football game at my brothers' university. We were heavily invested in the university tailgate scene up there and we never missed a game. These were weekends to be excited about. As a teenager, I was particularly taken with the idea of hanging around all of my brothers' gorgeous university peers, all in uniform, as we were at the United States Naval Academy. This was a fifteen year old's dream. 

I finished school that day and wasn't feeling at all myself. I was usually over the moon about jumping in the car for the weekend away, but on this day, I felt dizzy, a bit achy and had started to get a headache around the back of my neck. Now, this was weird on a few different levels. My mom had always had migraines, so I was pretty familiar with the whole "idea" of the headache, but had never had one myself. I certainly had never had one that was around the back of my head and moving behind my eyes. I can remember telling my mom about the pain and she genuinely looked perplexed. I was given a few Tylenol and off we went. Half way through the trip, things started to get worse. I was dizzy, felt a little sick and could not bear to see any light, anywhere. It rained the day we drove up and I can remember headlights from other cars feeling like daggers shooting through my skull. When we finally got to Annapolis, my mother was convinced something wasn't right. I wasn't entirely worried. I distinctly remember that. I just thought I had a migraine, like my mother had always had, that was presenting differently. But that good old mother's intuition knew better. She dropped my dad and my little brother off, to setup for the game, and took me straight to the emergency room. 

Funnily enough, I never asked my mom what she thought was wrong, but I think she probably was worried it might be meningitis or something similar. We waited in the ER for a few hours, finally saw a doctor, who was convinced I was just having a bad episode of something or another and sent us on our merry way with a few painkillers to get me through the weekend. I insisted on seeing the weekend through, and managed to convince everyone around me that I was ok enough to do so. The truth was, the painkillers didn't touch the sides. Every touchdown felt like my head being compressed by a printing press. Every burst from the marching band was a punch to the stomach. But, nothing was too much. I could get through it. I was trying to put on the brave face as much as possible. When all was said and done, and we were in the car on the way home, I finally let me mom and dad know just how much pain I was in. The next morning we were on our way to my pediatrician first thing. 

I don't remember this series of events exactly, which is frustrating, but I think it's because so much happened at once and so many scary "what ifs" play out from this one doctor's visit. My pediatrician was convinced I had meningitis. All the symptoms fit the diagnosis perfectly. Only thing is, in order to properly make sure this was the case, a spinal tap needed to be done. Even hearing the words scared me half to death. There was no way a needle going into my spine was a good idea or something I even wanted to entertain. I remember sitting there and praying. "Dear God, please, I'll do anything, just don't let them stick this needle in my spine. Anything." Funny, how prayers can be answered. I was in the room, waiting for the scariest thing yet in my life, when something even scarier happened. A nurse came into the room and said, "if you do a spinal tap on this girl, you will kill her." Ummmm...excuse me?

Now, there's a bigger story here, but it's long, annoying to tell and only has one piece of information that's relevant to this story. So I'm just going to share that, to save us all the time. Basically, at the age of six, I had a scan of my brain and neck and the neurologist had made a note that I had a Chiari Malformation

A Chiari Malformation is officially described as follows: 

Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.

At the time, I guess it was just one of those things that was asymptomatic, so nothing was done. It was just a tiny note, that would sit in my chart unnoticed for nine years. Thank God someone decided to take note. It turns out that such a malformation has a great impact on such things as the flow of  your spinal fluid and disturbing this could cause sudden death... hence "if you do a spinal tap on this girl, you will kill her." The lady wasn't being extreme. She saved my life.

So, the good doctor, at the time, realised this was out of his skill set and said I should seek out the assistance of a neurologist. And here's where things get even more interesting. One of the leading neurosurgeons in the United States was a neighbour of ours at the time. How's that for a coincidence? I also carpooled with his son to high school every morning. When we got home that day, my mom picked up the phone to said surgeon's wife, we were immediately connected to his office and he informed my mother that his partner was one of the only surgeons in the world that specialised in treating Chiari Malformations. Holy shit, right? He was right there in my home town! At this time, there were only a handful of surgeons in the world that had ever treated Chiaris with surgery. It was a high risk surgery (we'll get more to that later) and, frankly speaking, there weren't a lot of people willing to take on that risk. We were walking blindly into this new world of neurosurgery, but in we walked, the very next day. We were squeezed into the schedule as a case in need of urgent attention. 

A new scan of my brain and skull were ordered and the diagnosis was confirmed. I did indeed have a Chiari Malformation, but it could be neither confirmed, nor denied, that the malformation was what was giving me the headaches. So, we sat and talked about options. It's about two weeks after the headaches had started that we found ourselves sitting here. I was on strong painkillers, had been out of school for two weeks and spent most of my days in a a dark room to keep the headaches from being all consuming. My surgeon suggested we try a few things before committing to surgery, as he knew at the time what the risks were. We did not. The first thing that was recommended was massage therapy. Twice a week I would go and see a woman that would massage my neck, upper back and shoulders to see if perhaps taking the tension away from my muscles would release the pressure on my neck and skull. The headaches only got worse with each session. 

At this point, I was in agony. I had been out of school for a month, I barely got out of bed and I remember standing in the shower thinking I could feel each and every drop of water on my body as they fell from the shower head. I didn't know how I could spend the rest of my life living in this pain. I also didn't know how I could subject my family to this either. All of my mom and dad's attention was focused on me. Not only was I in pain, I could feel I was sucking my family dry. I had three brothers that were just as deserving of my parents' attentions and I was taking all of it. At the time, it was my little brother that I felt the worst for. He was 13 and here was his sister, a girl who could barely leave the house, who was always crying and constantly needing to be looked after. I wish I could go back and hug that kid and say thank you, because not once did he complain. Not once did he act like I was annoying or suffocating. He just sort of quietly helped to look after me, brought me pills and occasionally came in to watch movies with me when I could stand to have the light from the screen on in the room. He was this little silent hero that was watching his big sister suffer.

Eventually, it all got to be too much, so we went back in to meet with the neurosurgeon almost immediately. It was the first week in December. I lay, in a grey sweatsuit, with Sperry Topsiders on my feet, curled up on a grey leather table covered in a white paper sheet. The doctor sat across from us and said it was time for surgery. There were no other options. I nodded my head and agreed and was asked if I understood what I was agreeing to. The surgery was dangerous. There was a good chance something would go wrong. I could come out paralysed. I could come out brain dead. There was a chance I wouldn't come out at all. You know what I asked in that moment? "Are you going to have to shave my head?" A man was telling me there was a 50/50 chance that I would come out of a surgery with some serious problems, worse than the ones I already had, and I, as a stupid teenager, was worried about losing my hair. 

I never even entertained the risks, if I'm being honest. At this point, the life I was living wasn't living at all. We scheduled the surgery for the next week. 

It wasn't until the day before the surgery that I began to understand what I was putting on the line. This was life, my life that might not exist after tomorrow. And it was in that moment that I started to feel really sick. I felt sick, not because I wouldn't exist anymore, but because I couldn't imagine what I would do to my family if I were to die on that table. What would happen to my mom and dad? Certainly something like this changes a family forever. And I wasn't thinking of it in a "I'm so great, life won't be the same without me" sort of way. I was thinking more, "no family is ever the same after losing a child." I would not do that to my family. I wouldn't.

So, I made a deal. At 15 years old, I made a deal with God, not being at all a religious person. That morning, the day before the surgery, I knelt before my bed, clasped my hands tightly, with my elbows resting on my pale pink bedspread and prayed. I asked to live through the surgery, to make it through enough so that I wasn't a burden on anyone as a result. That's all I wanted. In return, I promised to live a life that was full and overflowing with gratitude for what I had been given. I promised that each and every day after I woke up from surgery would be a day that was treated as a gift. I ended the prayer with a thank you for everything that I had been given up until that day and stood up feeling a little less heavy with grief. That was all I could do. Or was it? 

The surgeon had told us that the actual surgery would take between seven and nine hours. Both my parents would be there, and my little brother had taken the day off from school to stay in the waiting room with them. Even our neurosurgeon neighbour was getting involved, and had agreed to come into the surgery to check on me and help with some of the exercises. I hated the idea of my parents having to wait so long for me while I was in surgery. I knew they'd be worried and I wanted to do something to take their minds off the whole thing. So, I asked my dad to drive me to the pharmacy the day before the surgery. When we arrived, I asked that he stay in the car while I went in. I remember, as clear as if it were yesterday, feeling the sting of the fluorescent lights in the shop. It was absolute agony. But, I can also remember thinking, and knowing, this would be the last time I would feel this pain. 

I grabbed a basket and moved to the magazine aisle. I filled the basket with mags ranging from Vogue to Sports Illustrated. I then went to the candy aisle and found all of my mom, dad and brother's favourite sweets. As I approached the counter, I took out the $25 I had made babysitting before the headaches started, and paid for the bag full of goodies. I got home, found a large box in my closet and filled it with all the treats. I charged my Gameboy (remember this is long before iPhones or even cell phones), to also include for my brother to play while he waited. Then I sat down and wrote two letters. I wrote one to my parents and one to my little brother. I can't remember exactly what I said in each. But, I know I was preparing for whatever could happen on that day. I was saying don't worry, goodbye and see you soon all at the same time. I was asking them to relax but reassuring them that if things didn't go to plan that wouldn't be the end of the world either. I cried the entire time I wrote both letters. I think that was the only moment that the whole idea of going in for a life or death surgery actually hit me. And it hit me hard. But, as fast as it came, it was gone. 

Early the next morning I was admitted. It was the second week in December, it was freezing cold outside and I remember seeing my breath in the air as I lent down to kiss my dogs goodbye. I then turned around to my dad and said jokingly, "if I survive this surgery, all I want for Christmas is my own golden retriever puppy." I know... an evil thing to do moments before you are saying goodbye. I saw the opportunity and I went for it, all the while knowing it was a bit of a joke as that's all I'd ever wanted since I found out my dad had given my mom her first two golden retrievers. 

The rest of the morning is a blur. I honestly think I blocked it out. I think I left the gift box in my dad's car, so that he would find it an hour later and bring it in for the family as they waited. I think I remember kissing my mom goodbye and telling her I would be alright and would see her in a few hours. But the only thing I really remember clearly is being woken up in the surgery itself.

There were so many things I wasn't told about the surgery. So many things. For example, no one told me that the biggest pain I'd have after would be from where they drilled four screws into the two sides of my skull so that there was no movement during surgery. And certainly no one would tell me that I would be woken up during surgery and asked questions. And that's all I remember from that day. I simply remember someone saying my name and then holding up cards of farm animals, asking me to identify them and then asking me to count from one to ten and also recite the alphabet.  They thanked me and back to sleep I went. I can't remember if that happened all at once or a few times. I just remember the bright lights of the operating room, the dozen or so people surrounding me in gowns and the way they smiled when I knew that the animal on the card was a pig. Apparently, as they were having to remove scar tissue from my brain, as a result of the Chiari Malformation, they were checking to make sure they hadn't disturbed anything in the process. 

The next thing I knew, I was opening my eyes in a room that had a large sofa and a television on the wall. I could feel the fleece blanket from home draped across my legs. My mom, my dad and my brother were all standing around me. I thought I could hear them all taking and I thought I could see them. I also thought I was talking. Apparently I wasn't talking as I could hear them exclaiming, "I think she's waking up." Finally, I was able to speak, after what felt like minutes of trying to talk to them with no words actually leaving my mouth. I was speaking normally. I was constructing sentences that made sense and all of us, myself included, were crying and laughing as a result. But the most magical moment came when I realised I was in no pain. Sure, I had a nine inch incision up the back of my head, but I had no headaches. None. There was light coming in from the window, lights on overhead, a TV on in the background and people all around me talking and I was headache free. That, right there, was the game changer, in that moment.  I had survived, I could move all my limbs, and the pain that put me there was gone. It had all gone perfectly to plan. I closed my eyes and thanked God immediately. I know.... religious again. But, nothing brings you to religion faster than facing down death or pain and having to ask for help to get through it. I had asked for help and I do believe some force, greater than myself, stepped in to deliver.

The road from there wasn't easy. Apparently, the part of my brain, that had been tampered with during the surgery, meant I would have to reteach myself a lot. I had to relearn almost all motor skills. We all found great comedy in the fact that I couldn't, for the life of me, figure out how to get a fork to my mouth. I'd be trying to eat peas out of my chin, my cheek, my earlobe. You name a place on my face that isn't my mouth and I guarantee you it was covered with food by the end of a meal. But, we were laughing. We were laughing because we knew it would get figured out and the fact that I was around to do such ridiculously hilarious things was enough then and there. I'd also have to relearn to write. My hand didn't remember how to hold a pen or write my name. So that was fun at fifteen. But, that was all. Everything else was back to normal. Well, almost everything else.

I remember, when I was a kid, people used to joke all the time about brain surgery. I don't remember the exact perimeters of the joke, but it was usually some sort of insult around being so stupid. I know, ridiculous. But, try going back to high school, after you've been out for two months, having brain surgery. Add to that the fact that you're going back with a head that's been completely shaved in the back and you have a scar running down your neck to boot. There is nothing normal about that return and we all know teenagers are ruthless at the best of times. When you are a walking, talking brain surgery joke, you just want to slip away into a black void and never come out. 

Here I had just survived one of the toughest moments of my life, and I yet I faced something that felt even harder... high school. Nothing about the return was easy. I came back after Christmas. I had a spring in my step, of course, as Christmas morning had in fact delivered as promised. My dad relented and Santa had delivered a note that, come January 1996, a golden retriever puppy would be waiting for pick up with my name on it. But that was weeks away, and right now I was dealing with the "where have you been" questions from dozens of teenagers. I tried to avoid the topic as much as possible. I'd just been sick. Let's leave it there. But, the rest of the year was torture. There's no point denying it. I hated being back. I was playing catchup, from having missed so much. I was also a social outcast. Once it got out that I had actually had brain surgery there were kids that would walk past me and shout "Frankenstein" as they got to the other end of the hall. I mean, clearly there wasn't an original bone in any one of their bodies. But, it cut and it cut deep. At the end of the year, I changed high schools. Parents, I will always love you for allowing me to do that. I needed a fresh start. But that's another story for another time.

Today, 23 years after the surgery, I very rarely think about it at all. Well, I very rarely think about the surgery. The person I am today is a direct result of what happened in that three month period. I know that for certain. I take nothing for granted, I am grateful for every opportunity, every chance encounter and every setback that may befall me. Because I made a deal. I asked for this life. I asked for it and I made a deal to get it and I honour that contract on a daily basis. My whole positive outlook on life stems from being a teenager that was told she might not have a life at all. 

So, when my scar is occasionally revealed, mostly to hairdressers, I laugh when I have to say "oh yeah, that... I've had brain surgery." I chuckle about it. I really do. I can't believe it's something I went through. And I suppose I've never felt the need to really share it publicly until now. Maybe it's a way of explaining why it is that I'm always trying to see the positive in things. Maybe it's a way of letting my guard down a little bit more and letting you see why I am the way I am right here and right now. Whatever way you want to see it, it was a story I was ready to share and there you have it. Now you know someone that's had brain surgery.