First, a quick recap. On the way home from the Christmas party a few years ago, I went blind. For about 8 seconds, starting as I hit the gas at an intersection a quarter mile from my apartment, I couldn’t see anything. Freaked out as I was, I managed to get home safely. Then I talked to my brother who is himself a doctor, and he suggested some follow-up appointments for me the following day. I went to them, and after an MRI I was diagnosed with a rather large (4.1 x 2.4 x 2.1 cm) acoustic neuroma, which was blocking an important cranial sinus cavity and causing fluid to back up around my brain. This caused my blindness, a deafness I previously believed was due to an ear infection, and swelling in my optic nerve. After I got the diagnosis and was scheduled for an ASAP surgery, my parents drove/flew into town, and we made ready for my surgery in New Orleans at Ochsner Medical Center.
The night before surgery was warmer than you’d expect for the middle of December, or maybe I just couldn’t feel the cold. That’s somewhat unusual for me, since I am usually very prone to feeling the cold and reacting to it rather poorly. Tonight was different, however. My phone would not stop ringing, and I had to do about a dozen different things before the night was done. Through it all it was important to reassure everyone that I wasn’t scared, even though I was terrified, because my showing fear would just cause them to worry more. Them doing that would hurt them, and not help me a whit, so I couldn’t abide that. So there I was, being stoic and cold about it, even though I was staring death in the face more plainly than at any time in my life to that point. Then, the phone rang.
It was always the same conversation.
“Oh, hello [person]. How are you?”
“[Answer, usually that they were generically good]. I heard what was going on from [person or Facebook].”
“Yeah, it’s… a Thing. I don’t know what to make of it yet. [concise explanation of pt. 1 of this post, summarizing events up to this point.]”
“Does it hurt?”
“No, oddly. I can’t feel it at all. The doctor said it has been in there for at least 4 years and I never knew it, but if they don’t remove it then the symptoms are only going to get worse.”
“Do you mind if I pray for you? I talked to [religious figure/group] in [name of church] and they said they would pray for you, but I wanted to make sure you wouldn’t mind.”
“No, I don’t mind at all! The more the merrier, really. I’m really touched they would do that, and I really hope you have a [happy holiday of choice].”
[2-5 minutes of polite conversation.]
I didn’t mind, and don’t mind, and certainly all the well wishes were really gratifying. I don’t think prayer in any form ever hurts, so I was happy to receive all the well wishes I did. That said, after about a dozen iterations that night alone, the conversation did become somewhat tiresome. The calls started to slack off around dinner time.
At around that time, I called the Notary Public. Although I had drafted the Living Will, Last Will and Testament, and Power of Attorney the night before, they needed to be signed and notarized before they were official. She arrived an hour or so later, and two of my friends witnessed the signatures and seals being placed on the document and in her official register. The whole thing took about an hour, and cost around $50. At the end of it, though, I had a document that ostensibly empowered Laura to take care of my affairs if and when and while I was unable to do so for myself, and two that made sure that if I was unable to do so then my will for myself and my things would be carried out in any event.
Afterward, with my parents arriving in town, it was time for dinner. We went to an Italian restaurant in town and ordered enough food for everyone, then tried desperately to avoid talking about the reason why we were all in town at once. It was actually a very good dinner, in which I was genuinely able to forget my cares and worries for an hour or two and laugh. We joked, we ate, and it was all over way too fast. Then we drove back home, and after about an hour my mother started obsessively cleaning. I took that moment as a good one in which to visit the apartment manager’s office.
When I told them what was happening, they were very concerned and upset and just as clueless about how or why I would need to be telling them. That I was about to go under the knife and might be dead this time next week, or have no income and thus no ability to pay for an apartment, didn’t seem to register with them at all. Just as irrelevant to them was the fact that this might violate the lease, and mean I was financially or practically unable to keep it. So talking with them was very frustrating and not at all reassuring. What I badly needed at that moment was reassurance that my life wasn’t going to implode when I was stretched out unconscious on a hospital bed, and from that particular source I got exactly none of it. That night, it turns out that I should have called my bank and made sure that they understood that my Power of Attorney was real, but I didn’t. That would come back to haunt me later. My employer knew what was going on and they generously gave me leave to not be at work until it was all resolved. I might have gotten short- (or as it turns out, long-) term disability as well, but because I was just that day transferring from a temporary worker ti a permanent employee I wasn’t eligible for that yet. Therefore, for the entire period I was out of work my income was $0/month, which is very hard to live on. Thankfully, my temporary employer allowed me to retroactively file for COBRA insurance, which allowed me to carry over my previously-paid-for medical insurance despite my officially changing employers and insurance plans. The irony is if they’d followed the exact rules, then I’d not have had any insurance and been responsible for the whole bill myself, losing my insurance *because* I was working, and the new insurance not covering the tumor because it was a pre-existing condition. Complain about the Affordable Care Act all you want, but that situation is ridiculous, so clearly there is a need for reform. It also would have been personally ruinous if the staffing agency hadn’t bent over backwards and bent the rules just for me. We’ll do that tally in the next post, though. For now, there’s more story to tell.
Unexpectedly, I was able to sleep soundly that night after about an hour of tossing and turning. I don’t remember my dreams, but remember thinking in the morning that they were the kinds of dreams one expects to have the night before one potentially wakes for the last time ever. When I woke up, it was time to get ready. I had an internal chuckle at the idea of packing for two weeks when I might die in five days, but ultimately it was better to pack more than I needed than not pack enough. We drove to the hotel, which was attached to the hospital, and reviewed the schedule of pre-op appointments. First, a meeting with the neurosurgeon. Then, a meeting with an audiologist to check my hearing. Then, a meeting with the otolaryngologist (ENT; Ear-Nose-Throat doctor) who would be assisting the neurosurgeon. Then, another MRI. The following morning, I was scheduled for surgery.
The meeting with the neurosurgeon was short, to the point, and somewhat reassuring. The surgeon was arrogant and haughty like experts often are, emotionally distant in the way one expects of a person who has done this dozens of times, and exuded an air of confidence that this was entirely within his capabilities. Although that kind of attitude sometimes bothers me, in that specific case it was just what I needed. The chief of neurosurgery would be operating on me, and if anyone could do this well he knew it was him.
The hearing check gave exactly the result I told them it would. I was deaf in my right ear, and my hearing in my left ear was completely normal. The ENT confirmed this, and played the “bad cop” to my neurosurgeon’s “good cop”. I came away from that meeting scared, but not unnecessarily or unreasonably so, and somewhat shaken but ready for the next step.
The MRI was kind of cool. They placed eight tags in specific places around my skull and then took a detailed picture or the structures of my brain, so that in the OR they could re-create my brain with holographic imaging and operate with that overlaid as a guide to their surgical implements in order to avoid important structures and remove the tumor more completely. I saw none of that, though. To me, it was just more clank-clank-boom whir-whir thud-thud-thud-thud-thud click-click-click buzzzzzzz, time for nachos. I didn’t actually get my nachos that time, though. I think I had a burger from the hospital cafeteria, which was overpriced and overcooked.
For dinner we had sushi at one of my favorite restaurants in Metairie, which I ate while ignoring the stares from patrons who wondered what those weird tags were on my head. They were the radiation tags from the MRI, and they enabled the technicians to map my head to the holographic image they’d generated earlier that day. At that precise moment, though, I felt rather like a plague victim from the stares I was getting. It wouldn’t be the last time.
Later that night, back in the hotel room, we watched movies. My stepfather played around on the X-Box that my brother brought, and we tried to again ignore why we were all there. There was nothing to be gained by dwelling on something none of us could control, and since we were all together it was an opportunity to spend some quality time together. It took some negotiating, because many years prior my parents had divorced and I needed to navigate their complex relationship and the complexities of bringing together my family and Laura’s family temporarily, but we managed. People have an amazing capacity for resilience and compassion when united by a crisis.
Unlike the prior night, I didn’t sleep very well that night. I tried, but I ended up wandering around the hotel and the grounds of the hospital instead of sleeping. At some point that day every person that came there to be with me had a moment where they had me to themselves, and in that moment they shared their words of reassurance or guidance or advice. Some helped, some didn’t. But I realized later that much of that wasn’t about me, precisely; they had a need to say what they did, and a need for me to listen and accept it without reservation. They wanted to help in some small way, and even though I knew that was in many ways utterly impossible I appreciated it for the genuinely altruistic sentiment that it was. There was no way I was going to not be worried or scared shitless at that moment, at that place, no matter what I did, but it was very nice of them to try to get me there and lighten the load. They also needed to feel that I was going to be okay, because me being scared scared them, made them realize I might not be okay, so for all I was scared I held it in for their sake. They needed me to, so I did. I’d do it again.
I remember talking with my brother and my fiancee at a few points, and confiding my fear in them. I wasn’t scared of death, not really. What I was really scared of was disability. There were things in my life that I feared losing, things I used every day that made me, me. My voice. My independence. My ability to walk, to eat, to think. My identity. More than dying, I feared being obliterated, being unmade by having my personality unwritten or capacities undone. I prized my voice and my ability to tell stories with it, and the mind behind the words that let me craft the stories the words made up. There was nothing I could do about that worry, though. It just was, and I had a whole day yet to live with it.
About 4:00 AM the morning of, I went into the surgery center and checked in. It took me about an hour to get seen by the pre-op nurse, who set me up for my 6 AM surgical start time. At 5:15 I was taken back into the prep room, and told to take off all of my clothes and put on The Gown. I did, and then hid under the provided blankets because I hate the cold and it hates me. Eventually, they placed an IV in my arm which I think was saline. They were kind enough to warm it up for me, so it was like an injection of 100 CCs of Warm straight into my left arm, which helped. Then I said goodbye to Laura, who I’m sure was trying hard not to cry, and they wheeled me back to the operating room.
At that point, the anesthesia was hooked up to my IV and things started to get fuzzy. I’d like to first give you the account that other people gave me later, and then the experience from my perspective. I think both are of value.
The surgery took 15 hours. During the surgery I needed to be resuscitated three times, meaning that at three points my heart stopped beating. Throughout that they removed most of the tumor, cut off the blood supply to the rest, and moderately impinged on my cranial nerves in the process. None of this was unexpected, given that they were operating right next to the part of my brain that regulated my heart beat, breathing, digestion, and other suchness. After the surgery, I was kept heavily sedated for about three days. I don’t remember those three days, though I am told that I tried to do some communicating during that time.
They told me I wouldn’t dream; I remember specifically asking about that. They were wrong. I had four dreams after I was sedated. I can’t say whether they happened during my surgery or after, but my gut feeling is that they happened during given the details of the dreams themselves. I remember them clearly, even now, and the order they came in.
The first was more an out-of-body experience than anything. I was floating above my body watching the surgeons operating on me, and the nurses moving around the room. The whole thing is very expressionistic, floaty, something like how things appeared in What Dreams May Come. Maybe it’s just a composite of my expectations of the experience, but whatever the reason, that’s how it manifested. It ended with the monitors beeping loudly and people starting to move more rapidly around the room. I got the distinct feeling that something had gone wrong, and then the dream dissolved into something else.
The second dream was very dark. I could hear faint voices in the distance that sounded like my doctors and nurses, and I got the feeling that they were trying to revive me. I felt but did not see a distinctly feminine (not necessarily female, but certainly feminine) presence next to me but out of sight. The realization that came after wasn’t so much in words, but it amounted to something like a hand beckoning me on if I wanted. I looked up, heard the voices, and felt that if I took her offer then I would certainly be at peace. Unfortunately, there were people that my peace would hurt, so I declined. The third dream started.
After the darkness and quiet of the last dream the third was riotous. I was placed on a table, spinning. There were impossibly loud klaxons and blaring lights all around me. I was spinning faster and faster, trying to tell myself to calm down and control it. There were voices that said that if I didn’t get control of myself then I would lose myself in the chaos and confusion. I took in a slow breath and felt the ground beneath me, felt that I was not moving, told myself that I was still and quiet and that the only thing moving was my mind. If my mind would kindly sit down, this would get much easier. As I did, I felt that same presence near me but out of sight. Thoughts rose in my mind that were simultaneously my voice and not my voice which said, at the speed of thought, that this was what I was going back to. That I would have this to look forward to if I chose not to move on. If my hold on life, if my attachment was that strong, then I would suffer. I knew that was true, but at the same time people I loved would suffer if I moved on, and besides I hadn’t even got to marry my fiancee yet so I still had some unfinished business. I made a promise. There was another option, though. That was the last dream.
In the last dream, I was being wheeled around in a wheelchair by my wife. It was the future I guess. In this future my recovery had been swift but incomplete, largely painless but left me unable to walk or do some things on my own. If I wanted to avoid pain, this would do that. I refused. Pain was preferable to disability, and pain is only a sensation. Suffering is a choice we inflict on ourselves, anyway, so if I stayed sufficiently focused and unattached then I would be able to avoid much of it. We reached an understanding; a choice had been made.
That’s when I woke up. It had been three days, and I was on a bed in the ICU. The Weather Channel was on for some reason. It was the middle of the day, and I tried to ask for a glass of water. When I tried no sound came out. I was mute.