Ep.8 Surviving A Descent Trilogy: Recovering From My 3rd Brain Surgery

It was May 31st, 2018, two months before my 22nd birthday, that I was diagnosed with a brain condition that would see me through two surgeries, months of hospital stays and a whole life of recovery ahead. There had been months of suffering, confusion, and misdiagnoses. Periods of time where I thought I might really be going crazy, convinced my sanity may have fractured. But it was on this day, after an overnight emergency visit, that the culprit for my woes was finally discovered. It was a cyst. A cyst in the lower region of my brain causing the swelling and herniation of my cerebellum, which resulted in the malformation of my lower brain and spine. My brain was being pushed out of my skull. Ahead of me lay a path of recovery and hard work, a journey I had no idea I was getting into at 22.

It was February 21st, 2022, that an MRI would show that cyst was growing again, blocking the fluid around my brain and once again causing swelling, pressure, and the herniation of the base of my brain. It was this day, I thought for the first time maybe time travel was real after all. Because here I was once again, back to that day at 21, feeling the same fear and despair that had already stolen so much of my life. I felt defeated. I was once again trapped in a frozen moment while the world stopped around me. I was 21 again, sitting in front of a doctor with a concerned look on her face. A look I knew all too well.

Only I wasn’t 21. I was 26. And it was happening all over again. The room was different, the months leading up to this scan were different, the faces were new, and the room around me was a different room. But the words were the same. The outcome was the same. And the road I was facing, was the same damn road. And once again, I sat in silence listening to the conversations around me, unable to process the weight of each sentence. The cyst had grown. The fluid in my brain wasn’t flowing the way it should be flowing, and the base of my brain was herniating. On top of this, the scar tissue from my previous surgeries was causing a blockage, creating further complications. There was also the opinion of the surgeon this time, that my previous surgeries were done incorrectly. An added layer to the already suffocating layers of concern. As though this was a useful piece of information to store away. And not something that would continue to play through my mind over and over for the months to come. An opinion that flooded my mind with unhelpful worry. Was this the reason I was here again? Would my outcome be different if I had been treated by different surgeons? Was someone to blame? But reality isn’t that simple. And those are questions that can never be answered. Nothing but an added layer that didn’t need to be put on top. As a patient you have no choice — no choice but to trust the experts. To trust that the surgeons taking care of you are doing the best they can, what they believe to be the right option given the circumstance they are presented with. And placing blame from one surgeon to the other, does nothing but cause emotional turmoil in the mind of the patient, the one with absolutely no control. So while it sticks out as the contrast between that fateful day in the hospital and the thoughts that raced through my mind, I had no choice but to push them aside, to accept what was. To try to assemble my now fractured trust into the surgeon in front of me, because there was no other option. My health and my future were in their hands. I was heading down a dark road if I couldn’t reassemble that trust.

All there was to do was focus on what would now be done — another decompression surgery. An attempt to remove the scar tissue, as well as the mesh that was previously attached to the base of my brain — replaced with a dura patch where the base of my skull was to be removed. And this time, a permanent shunt inserted to drain the cyst that may continue to grow. Of course, this was all possibilities. Due to it being my third round of brain surgery, the reality was that the surgeon was unsure of what she was going to find — unsure of what my brain could further handle. The goal was to go in, assess the damage, and repair what could be repaired. All I could do was nod, accept the reality I found myself floating on the edge of, and try to cling to the last piece of sanity left hanging by a thread.

And on August 22, after months of complications and delays, I was once again seeing my way through another surgery. One that turned out to be bigger than any I’d had before. The decompression was done successfully. But more of the bone at the base of my skull had needed to be removed along with bone from the top of my spine. The scar tissue had grown around the titanium mesh that was pressing into my brain — which could only partly be untangled. The dura patch was sewn in to replace the missing bone and expand the space for fluid to flow around my brain. The cyst was fenestrated and drained. And the shunt was inserted, a permanent fixture to continue draining the persistent cyst at the risk of it growing once again – allowing the fluid to drain away and be absorbed elsewhere in my body. At least those are the fragmented bits of the surgeon’s summary I remember being given in an all too hazy state as I lay in recovery the following day. Most of my memory of this conversation comes in waves, interrupted by bouts of sickness and fading consciousness as the minutes swam in and out of focus. The pain overriding most of my senses as I tried to make sense of it all.

It took me a while to process the extent of the surgery — the knowledge that I now had not only titanium mesh and screws in my brain, but a dura patch, and a shunt to go with it. Along with the added missing bone and pieces of my spine — marked by the now longer scar down the back of my head that will always be a reminder of the hidden reality within. The strange sense that none of it feels normal. Yet I had no choice but to feel relief. Relief that was born from the hope that all of these things, while at times confronting, give me a good chance at the best shot of health I can get. A chance that could lead me on a path away from ending up here once again. And I had nothing left but to collapse into this hope.

In many ways, this round felt harder than the last. As though the years between existed as a rope tying me to a life it felt like I could never escape from. A rope that felt longer, now — solidified by time. The years no longer mirrored the sense of hope they had, but an inevitability to the road I once again travelled. As though landing up here again erased all of the hope I had built that my health was going to be okay. Because after all this time, all the months of pushing through and trying to rise above, I landed right back at the start of the race. A harsh sense of irony that those years held no point. Since in this moment, at the end of it all, it felt like I had lost more than I had ever gained. Years wasted not to get me to the other side, but back to the start in a cruel twist of fate.

But no matter how hard I pushed against the frustration and the anger I felt at the picture of my life, there was nothing else I could do. Nothing except start again. To once again navigate the road of recovery and hope through it all that this time, I would get to the top of the mountain. And so the journey began once more.

Days of hospital stays turned into months of neuro-intensive rehabilitation and physical and cognitive therapy. A relentless fight to regain my ability to function. From bed-bound to wheelchair to crutches, and eventually to my life again. This road was long, at times never-ending, often pulling me back with each push forward. I once again walked the line between the balance of physical and mental healing. There were many days consumed by my physical recovery — from physio and a constant push to move an unwitting body as much as I could, monitoring blood pressure and swelling, taking meds, managing pain, and other medical joys that filled the day. Navigating a new reality in a wheelchair, screaming at my body to move — to do the things it knows it should do. The frustration at progress that moved all too slowly as I sat staring at a body that no longer felt like my own.

And there were many days just trying to put the pieces of my mind back together. A mind that seemed to have fractured with the extent of this last surgery. My cognitive state had taken a bigger hit this time. And it was something I wasn’t as prepared for. As the weeks went on, it became clear the extent of the cognitive impairments I was facing, and for a long time, it felt as though this only continued to grow. My thoughts were slow, my speech was difficult, and my memory felt like a distant ability. I spent hours in cognitive and speech therapy, in physio and occupational therapy, trying to connect the dots between my thoughts and movements. There was a disconnect between my brain and body, a wall preventing me from the simple daily tasks. I found small conversations difficult and exhausting. The ability to express myself felt like sifting through concrete. There were words that seemed to have fallen out of my mind as though they never existed in the first place. The world felt slow. I felt slow. And everything I tried to do, felt slow. And there was a blurred line of permanency. An uncertainty of when or if these issues would improve over time or at all. A question of if I will ever feel like myself again. And an agony that clings to you when you feel different to the person you are used to being — it becomes a desperate battle to not let it tear you down.

This is something I will always have difficulty expressing, something I still struggle to talk about when the questions are asked. To know that physically, you are the same person. But internally, there is a stranger at the wheel pulling the strings. To know there was a version of you capable of all the things you’re trying to do, but this isn’t the version of you that’s here now. And one you don’t know will ever return. As though a part of you has gone on vacation. And you’re left trying to pick up the pieces of a reality that doesn’t make sense now. Sentences that aren’t coming through, confusion in place of simple situations, thoughts that don’t feel like your thoughts. A body trapped in a mind that feels broken into a million pieces.

And as my body started to heal, I felt my mind drift further away. As though the space for my physical recovery was taking away space from my cognitive recovery. As though my brain only had the ability to let one part of me work. I discovered eventually that this had to do with mental capacity, and I began to learn how to manage it. How to balance my recovery so I wasn’t sacrificing one for the other. But for a long while, I wondered if my mind would ever feel like mine again. If I could live with being grateful enough for my physical recovery if my mind wasn’t able to catch up with it. If I would simply always feel behind, never able to keep up the pace for life.

These were the most difficult months I had to face, the darkest shadows I have ever had to encounter. But I knew somewhere, deep and hidden, was a light that would eventually reach the surface. And on the days I wanted to give up, the days that felt too big to climb, I remembered who I was at 21. A kid on the cusp of the most exciting adventure of her life, preparing to leap into her greatest chapter when she had her world torn down. A kid who sat in front of that doctor with a solemn look on her face who told her she couldn’t go home. A kid who was one minute travelling the world and the next minute lying in a hospital bed, preparing for the biggest challenge of her life. A kid who was told she might not have a future. Who, despite losing everything she spent her whole life fighting for, managed to pick the torch back up and walk straight through the battle. Fighting fire with fire and overcoming every mountain thrown her way. A kid told she may never walk unaided again, who marched back into her surgeon’s office on her own two legs, not 3 months later having learnt to walk on her own again. A kid who, despite her battles, continued to dream, continued to hope no matter how often she was knocked down. A kid who still existed in this body 5 years later, facing the same battle of fire. A kid who would never let herself give in. A kid who never got the chance to grow up and turn those dreams into reality. A kid that was now getting that chance with every step I took to build myself back up, through every day that threatened to knock me down. It was for her that I made it through the days that so nearly stole my life. It was for her, I fought to find every piece of myself that had gone missing. It was for her that I found my voice again, that I relearnt how to train my brain, how to walk, how to use the half of my body that had seemed to whither away. It was for her that I fought through the pain, that I pushed against the limitations and the fears and the reality of a life I was scared to face.

And it is for her that I will face whatever path lies ahead. Wherever the road takes me, I’ll walk it hand in hand with the kid I once was, fighting every day for the dreams she always had.

Because it is for her, that I survived the descent.

m.a