It’s been a few months since my last episode. And while I had a lot of hope and excitement for what these months were going to look like, life had other plans. But I am ready to pick up the pieces, as we so often have before, and finally provide a bridge between these empty pages. A bridge that hopefully leads to a brighter horizon.
Six months ago, I set out on a great pursuit to change my life. And six months ago, everything began to shift. I started this online chronicle as an ode to that journey. A keepsake for me to document all of the unfolding changes and the moments where it all began. And my year-long journey of radical change was coming to life.
I started to feel alive. As I wrote, a picture became clear of all the possibilities I could see and the potential I was beginning to create for myself. I was excited for the first time in many years. And everything started to feel okay again. Until one day in the journey, the pain that had kept me under for the past five years began to rise back up. And it started to change the course.
The health that I had been fighting so long for began to decline again. The health I had crawled my way back from the bottom for was failing once again. And it was a road I had travelled many times before. I knew the signs, I knew the fear, and I knew that something was once again wrong. I knew the direction in which I was being pulled, no matter how hard I tried to fight it. Because I have always known my health was a fragile state. It was something I could do my absolute best to try and control, but ultimately it wasn’t a controllable state. Or at least there were parts of it that were, parts that got me here in the first place. I could stay afloat. I knew this. I had the skills and tools I had been developing for years to keep me from returning to a state of despair. But there’s an overwhelming sense of helplessness that attaches itself to something you can’t control. To something you’ve had to fight for time and time again, only to keep ending up in a similar state. And because I knew this path all too well, I knew there was nothing I could do in that moment to avoid the inevitable pullback from the pace I had only just begun to build momentum for. I knew the journey was about to be slowed. The future I was building was taking a pause. In the past, this would have been the moment I threw my hands up in defeat. The frustration of never-ending obstacles becoming too much to accept. But I knew this time I was above it, whatever the outcome may be. That it might not be a path I would ever choose, but it was one I could choose to stay on top of. Even if it meant taking another step back.
What I had so often run from in the past is that the truth of my health is that my condition can flare up at any moment. And the symptoms I fight so hard to manage can rear their head at any time. And as it turns out, a brain condition is not something I can hide from, no matter how stubborn my will to conquer it may be. But there was a fight in me that had built over the past year that equipped me with a false sense of invincibility. A foolish notion that I could beat it. That I had beat it. When in reality, it was my definition of the battle that had me skewed from the start. I don’t mean this in a hopeless sense. Rather, when I thought of beating it, I thought of living my life free of it. But this isn’t a reality I can control. My brain has been through it. A lot. It’s been cut into more than a few times, parts moved around that shouldn’t be touched and had foreign implants forever etched into places they will always be. And these things have saved my life. They have kept me alive and able to live my story. But no surgery or wishful thinking will ever revert my brain to what once felt like a normal state.
And this may always cause complications. Complications that can, at any point, have consequences. Some of these complications may be minor. And some may be more. But the truth is that I’m looking at a life of ups and downs, no matter how hard I try to control the narrative. I may have days of feeling invincible, of my health feeling as good as it could possibly be. Days where I can run and swim and work on a future I can see. And I may have days that feel the opposite. Days where I can’t run, or read, or write. Days where getting out of bed can feel like climbing a mountain. Days where simple conversation can feel like impossible tasks and the four walls of my bedroom become my constant companions. Days where I am unable to keep my mind from wandering to a place of fear that the worst may have happened.
And that has been what the last few months have looked like for me. I began to experience pain I hadn’t felt since before my last surgery. Pain that saw me once again through many medical appointments and scans — an instant sense of deja vu throwing me back onto a path I was so tired of walking. And once again on a mission to find answers. The never-ending questions of what might be wrong this round, how I could be doing so well in one moment and declining so miserably in the next. And once again, my mind was in a constant back and forth. Hoping it was simply a minor setback, or maybe my worst-case scenario was coming true. Eventually, I found answers that sat somewhere in the middle of my mind’s constant battle. The good news was things were looking okay structurally. But there was a possibility of damage to the major nerves in the back of my head from my last surgery, likely to be causing the pain and flare-up of my symptoms. Luckily this time, there was a solution that would avoid another surgery. I could try a nerve block procedure to see if it would reduce the pain and swelling through an injection into these nerves. The best outcome was that this would relieve the pain for a few months until I may need to have the procedure again. But for the first time in a few years, it was a solution I was excited to hear. A sense of hope not felt in a long time. If it worked, I wouldn’t have to think about more surgery or the possibility of living with constant pain day in and day out. It has been one week now since I had the nerve block, and the days have been rough. But I have finally begun to feel relief. And for the first time in months, I am starting to see the colours of the future beginning to resurface.
But while I was going through this experience again, I felt the shadows of times past trying to creep back in. I started to feel like I was failing. That somehow, I had let myself down. That I hadn’t done enough for my health. That I had let my growing dreams down before they had even begun. I was thrown off a path I had once again started to rebuild, and acceptance was hard to find. That I had been naive in thinking that I had won my health. That I really felt like I had beaten it. I felt foolish and embarrassed, once again feeling like I was promising myself a life I couldn’t commit to. As though all of my hard work and determination has turned into nothing. I was angry and sad. Anxious and frustrated. And I was tired of this road.
I couldn’t write again, the pain keeping me from my biggest outlet. The habits and exercises I began to develop became hopeful wishes for tomorrow. There were still things I could hold on to that kept me from a depth I had reached before. But there are big parts of myself that become shut down during these times. I couldn’t write because of the pain. But I also struggled to find the words to write. Because I didn’t want to acknowledge the setbacks, the parts of the excitement of this journey I was having to put on hold when I had built such promises for myself. A question of if I was heading right back to where I was a year ago, a thousand steps back from the place I had fought so hard to get to. But mostly, there wasn’t a lot to say. My days have been small again. Each moment a focus of getting to the next. Of prioritising my health, hoping for the chance to do the things I crave maybe tomorrow. Or the next. Hoping each night that I wake up with relief and my health back on my shoulders. And when morning arrives, hoping if not today, maybe tomorrow. There were a lot of maybe tomorrows.
What started as a few bad days turned into weeks, which rolled into a few bad months. And while it’s hard to face the hands of a clock that is once again ticking by, I can only hold on to that hope of tomorrow. But what remains true through it all, is that I haven’t been thrown off this path. There may be some detours in front of me, a few roads I might wish I didn’t have to take. The path may be slower. But I am still here. And I am still going to change my life. And I am still going to write about it. And even when I can’t, there will be days where I can. And what a story that will once again be. For now, I will come up for air as I can. I will keep holding on to this space for the exact same reason that I started it. To change my life. To keep healing. To keep fighting this fight, no matter where it goes. To keep growing, keep building, and keep feeling alive.
Because healing isn’t linear. It isn’t a journey from one road to the next. But it’s in all the moments you travel along that road. And some of these moments might feel like they are travelling backwards, but the point is that they are still travelling. That you are still going. And that is one truth I cannot deny, no matter how heavy the days can feel. I am still here. And I am still going. And none of that is a failure.
I was so sure the life I had built and the lessons and practices I had developed were bulletproof. So sure that these things would keep me on a constant path. But this sense of failure was driven by anger and frustration at things I had no control over. And they blinded me from the rest. Because what really matters is that it’s all okay. Even when it’s not. That I’m okay, even when it feels like I’m not. That though it all, I can stay afloat. Because no matter what happens, none of that progress can be taken away. The lessons I learned, the strength I gained and the tools I developed can’t ever be taken away. Because this part of the story is mine. And that will always remain mine, no matter where the rest of the story goes. Because the truth is that you can be knocked down at any turn, but it is the part of the story that you write that pulls you back up. Nothing is ever bulletproof in the end, but it is all part of the journey. And there is already a new destination emerging in front of me. A journey only being forged because of the circumstances these last few months have provided for me. A new chapter that is slowly coming to life and one that I am excited to share with you soon.
And it’s okay that I feel angry and frustrated. It’s okay that I feel hurt that my health is letting me down when I have worked so hard to keep it strong. I can be sad, upset, and painfully mad because I want so desperately just to get to live my life. And I can still be okay. These emotions are part of the fight. And they are not the failures. Because there is a part of my health, no matter how big or small, that will always be just out of my control. But what I can control is all the rest. And there’s a lot. I can keep myself as healthy as possible so that the setbacks are as small as they can be. I can keep myself strong through these lessons so that I am already further ahead each time I rebuild. So that I can do as much as I can when it feels like I can’t do anything at all. And I can keep my mind determined, my heart brave, and my fight burning. So that whatever happens, I will always have myself through it all. And unlike in the past, that can never be taken from me.
So this is me coming up for air. This is me accepting the gap in time I hate looking at, the missing pages of my story. Accepting that things don’t ever really go the way we plan, no matter how much we try to plan. That detours are okay. This is me accepting life for what it is and whatever may happen. And this is me, knowing it’s okay, even when it doesn’t always feel okay. This journey hasn’t ended, even if at times I let it feel as though it might have. At this moment, it looks a little different from where I began, but I’m starting to think that might be the most important lesson to take from it all. Maybe even the reason I set off on this journey in the first place. To learn that life will unfold in all the ways you might never have seen. That there is only so much of the journey you can plan. But that magic may be found in the roads that can’t be mapped, in places you might not be able to see yet. And the key is to weather it anyway and see where the storm may go. Because the unknown may one day be better than any journey you could have mapped. All you can do is continue to ride it, rest in the waves, keep up the fight, and not let the detours take you off course. Because you only ever have this moment and the person you become through it all.
And while I’m coming up for air, what I want to say most of all is that I promise you it’s still okay. Even when life scares you and you don’t really know what you’re going to do next. Even when everything hurts and all you feel is anxious and upset. Even when you feel hopeless about everything. It’s still okay. It’s always okay. These feelings have value and you don’t have to pretend and try to convince yourself that they don’t hurt you. Your strength exists in your ability to acknowledge your pain, to acknowledge the things that hurt you. But you must always remember that everything is temporary. That none of these feelings are here to stay. And when they leave, what remains is a stronger version of you than you were before. So let yourself feel. Feel everything you need to feel. Do whatever it takes for you to heal. Then come up for air. And never forget that it’s okay if it takes time. Even if none of it makes sense right now. One day, you will understand it all. But today, it’s okay if all you do is let yourself feel. Bravery is the quietest battlefield you will ever face. It is allowing yourself to feel everything you don’t want to feel. It is leaning into the parts of you that ache. It is forgiving and accepting yourself through the hurt, especially when it is the hardest thing to do. It is being with yourself, especially when you are not feeling like the version of the person you strive to be. It is still holding on and doing the difficult work. It is allowing yourself to be okay when things don’t feel okay. Because it is here, on this battlefield, where your bravery shines through. And I hope you never hide from the bravest parts of yourself. From the parts that make you, you.
m.a
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