After Sarah got back on the plane to Boston, I had time. Time to worry, to work, to strategize, to research, to wait. I also had time to figure how to tell friends and family what I was going through and what I was about to go through. The information was so raw to me at that stage, that I wasn’t sure how to deal with it myself, let alone tell others.
I knew I needed to go to the office and tell my boss and some colleagues what I had just found out. Dr. K informed me that when the surgery comes, it would come quick and I would need recovery time. I worked hard at the firm throughout the years, and that hard work put me in a position where others relied on me. I recall telling my boss and his response was splattered all over his face as he said, “Uhhhh, I don’t know what to do with this…are you ok?” He was the first person outside my family that I told and even that was hard. We chatted and I answered his questions the best I could. We developed a plan and I would begin transitioning my work to other people, which was both a relief and a disappointment. I was an integral part of something and now I was not. It was a good lesson to learn that the world continues to rotate and life goes on with or without you. My boss and colleagues were nothing short of pillars of support, each with their own reaction, but as much as I cared for them, I had friends and family that were life-long. It was one thing to compartmentalize “work”, but quite another to convey this monster of a message to “my people”.
In the sunrise of the social media age, telling people was not the hard part. Hell, I wasn’t sending post cards and messages in a bottle; there was a myriad of avenues that I could use. I did not have a Facebook account, and I certainly didn’t want to create one, especially with the purpose of spreading my news throughout the virtual realm. But an email…it felt so impersonal to write, “Hey everyone that cares about me, I have a brain tumor and need surgery, hope you are having a great day!” Who wants that emotional bomb dropped in their lap? That just gives a whole new meaning to the movie and quip, “You’ve Got Mail”! This ending however, was not a happy one!
I felt it wasn’t fair to send an email and expect people to read it, absorb it, and embrace the message. Even if people saw the email and thought, “I haven’t chatted with him in a while” and opened the email, it was like a trap. It was a wicked “Rickroll” that people could not delete without rebooting their computer and even then, there was no escape from the message. I essentially thought I was sending self-righteous SPAM to all those I cared about. However, my other option was to call members of my personal community, but the idea that I would have to repeat the story countless times seemed like a miserable Groundhog’s Day.
Me: “Hey, I have a brain tumor…”
Friends/Family: “Uh, when did you find out, what does this mean, how are you doing, WHY?!”
Now imagine that conversation over and over again. It is like calling ATT. The computer voice asks you all these questions “in order to direct you to the right area,” yet when you finally get a human on the other end, they proceed to ask you all the same questions. I would think the computer would relay the information. Perhaps it did, but the human is so maniacal they just want you to go through the process again. You sit through this experience only to be transferred to another department as they can help you with this problem. “Before I transfer you, can you tell me a good number to reach you in case we get disconnected…” YOU ARE ATT…YOU GAVE ME THIS NUMBER! You reach the next representative and again, they act like they have no idea why you are calling and ask for the same information and reasons why. Now, I would never compare my friends and family to my experiences with ATT, but you get the picture. I was told I have a brain tumor and I would rather live out my days doing anything but being on the phone talking about it.
So, how do I do this? After all the thought and angst, I decided that email was the way to go, which seemed saner than the ATT experiment! Through email, everyone would have the same information, could process it in their own time and choose to reply (or not) with their own reactions. It seemed simple enough, but I forgot a huge element in the delivery. I forgot that we are all human beings, that we read, hear and see things differently. We receive, process and respond in many different ways. My failure was not just confined to the subjective nature of other humans, but also to how I receive, process and deal with the responses back to me.
I never asked myself what I would deem to be the “proper” response. Power is relative to the amount of knowledge we have. When I went to see my doctors and complained about my health issues, they would ask questions in an effort to gather has much information as possible in order to get feedback or diagnoses. If I went it to my doctors’ office and said simply, “I don’t feel good” with no other information, what were my expectations of them to actually garner some sort of conclusion? I failed to think about this in contacting my friends and family, whom would do just about anything to “fix”, “help”, “do” something for me that I needed.
I held a few answers, but I essentially asked loving people to join my army in this fight without furnishing them with resources and weapons that they might need. In essence, I made a proclamation. I did not understand then, that the worst thing I could do was to provide a narrative where there was little room for dialogue. There was no proper response to such an announcement. Was I expecting a “Get Well Soon” card?!
Luckily, I had an opportunity to delay my “tell all” plans as I was heading up to my oldest cousin’s wedding. After my consultations with Dr. K, it was decided that the train was my best mode of transportation. I learned from Dr. K that the majority of people with brain tumors become patients upon having a seizure. The seizure brings the person in to the hospital, scans are run and soon enough the person becomes a patient. That process seemed so chaotic, scary and time-sensitive that I was glad I did not have a seizure up to that point. The thought of, in one day, going from a “person” to a “patient” blew my mind. We are still people even if we are patients, but that label seems to get lost, especially when you hear it constantly. One is confronted with the question of whether one is a person anymore when the label of patient comes into play.
I had to fight to be a “person with a brain tumor” as it was all too easy to be called a “brain tumor patient.” It might not seem to be a significant difference, but to me it was a boundary where I would not be defined for what I have but for who I am. I received my MRI results and had time to visit doctors and form a plan, and for that I was lucky. I had time to process and remember who I was/am without the mind-screw of self-identification issues in an immediate form.
However, I started to feel like a patient when I was given Keppra to hopefully prevent seizures. I started feeling like a patient when I was told to take the train as the risk of brain issues on a plane was not something I wanted to be a part of. I started to feel like a patient when I was told that driving the Northeast Corridor was not in my best interest. The balance between person and patient will catch up you with, but I was still happy that it did not punch me straight in the face. It at least was kind enough to kick me in the shins before it decided to go for the knock out. Fight that fight…it is worth it!
So there I was, taking medicine for the first time in my life. I would compare it to a bad face tattoo. Keppra was always there to remind me that my life was different…there was no hiding it. The difference between the two was only a few people knew I had a brain tumor, but to me, it was like it was written all over my face. To this point, the only people that knew about my brain tumor were my mom, brother, Sarah and her immediate family, and some colleagues, but it seemed like every passing passenger on the train was looking at my face tattoo, knowing something was wrong with me.
I stared out the window of the train wondering why these tracks were so misaligned to jump, buck, and squeal. My head throbbed and my eyes were useless as they constantly tried to regain focus with every bounce, jerk and turn. I was used to traveling on trains through Europe and of course my daily Metro rides to and from the office, but the Amtrak from DC to Connecticut proved to be a sign that my conditions were getting worse. Throughout the six and half hour journey, I was tempted to get off at every station, not wanting to endure this new form of torture. I couldn’t sleep, couldn’t read, couldn’t work, so I stared out the window as the blur of life passed me by.
As the trained pulled into the final station, I was relieved to get off, but as I stepped on to solid ground, I saw my mom and Sarah waiting for me. It is odd how physical pain can almost immediately turn into emotional pain. It had been five days since I was told I had a brain tumor, and four days since meeting with Dr. K. Everything was still surreal, so my emotional state mimicked that of a sci-fi movie.
My mom is one of nine children and all of my uncles, aunts and cousins were a mere hour away from the train station. My cousin was about to get married. It was time to put on the performance of a lifetime. The last thing I was going to do was tell anyone about this. Imagine one of the most joyous days of your life, trampled by the saddest of news. I love my cousin, and that was all I needed to hang on to that weekend…the suffering would be in silence.
My mom had told me that one of my uncles knew, and it was with great relief that I was able to confide in him while acting like my “normal” self around everyone else. Having not been the one to tell him, it was rather nice not to be responsible for the reaction he had. But the reaction was pure love and it was a catalyst to get me through that weekend with a smile on my face.
Shortly after my encounter with my uncle, my phone rang and it was my best friend on the other line. Joe and I grew up together, and lived in DC together for years before he moved back to California just a year prior. I remember answering the phone, talking for a few minutes and then saying, “I have to tell you something and this is going to be hard…I have a brain tumor…”
This phone call was bittersweet, but mostly left a bitter taste having to relay that message. Actually, this phone call had little sweet to it at all except for the love and support I received. Joe was my rock and I realized after this call that I couldn’t make another one like this. I was a human puddle and the idea of doing this countless times would have evaporated me in to nothing but vapor. It was then that I decided emailing was the way to go. And with that, I collected myself and joined the party…and what a party it was!