Living in Openness
I am starting us off with some very good news! It looks like there will be no upcoming surgeries! The redness and irritation they were worried about because of my stitches ended up improving with new eye drops they gave me, so now instead of looking very high all the time, the redness is still there, but less noticeable. When I mentioned to one of my four eye surgeons that I was told I might need surgery, he said, “No way, absolutely not,” and then we both laughed nervously, remembering our collective trauma together! What a time.
Another part of this good news is that they took me off the final medication I was on — a drug called Diamox that made my hands and feet go numb with pain throughout the day and was pretty awful. I had been on it since June to lower my eye pressure, but now that it’s normalized, I’m able to stop it and THRILLED. The only thing left is for them to let me slowly taper off eyedrops, and I’m hoping that in the new year I can be off everything.
Now that things have started getting better, every day feels like a new chance to take advantage of this fresh start. I went for a dumb little run around the reservoir, and it felt shockingly good to be able to exercise again. Turns out it sucks when you run and feel instantly better afterwards and then try to do it again??
With everything I do, there is now a small voice that goes, “Is this how you want to spend your new freedom?” I feel more discerning, and intentional with how I want to spend my time. It’s funny, there used to be a different voice as I was recovering from my previous surgery last March, but the voice wasn’t mine. It was one of my surgeon’s voices, and with everything I did, I heard him asking, “Do you think this is really a smart idea? Is this safe?” I’ve been controlled by fear for so long— whether I get better and am afraid it’s going to get worse. Or if I’m just out of recovery and fearful to do anything to jeopardize my health. But now, for once, I don’t hear my surgeon’s voice— just my own. And it feels different because it’s not a voice that is closing me off from the world, but a question of openness, of taking advantage of this gift I’ve been given, instead of wasting it.
This openness to life is something I’ve struggled with, because over the past few years, through all the hard doctors appointments, and horrible surgeries, and doctors letting me down, I gradually developed a hardness inside me. A self-protective layer where I’ve kept everyone at a distance, my own feelings at a distance, so I could just continue on and survive. But now, things are different. I feel physically better, I have friends I can speak openly with about my condition, doctors I trust (and can now even text!!), and I want, more than anything, to chip away at this hardness.
I know it won’t happen overnight, but sometimes I am caught between feeling so overwhelmed and grateful that I’m better, and suddenly so angry at the way I've been treated within the medical system, or the current state of my eyes— how they might never look the same again, and I’ll just have to accept this altered state for what it is.
I’m deeply relieved that my eyes are doing better and I don’t need surgery again. But I can’t deny that when I look in the mirror, I feel sad and self-conscious that I don’t look the same as I used to. That there will always be a redness there, possibly indefinitely. It’s hard sometimes to acknowledge that although it may seem cosmetic, and small to other people, my body is forever changed due to forces out of my control. Maybe it all gets better with time, and the anger dissipates. But sometimes I wonder where the anger goes. That even though I try to change my mindset, these feelings of resentment towards my doctors, towards my body’s illness, still stay with me.
The other week, I went to meet with a potential new eye doctor. I got a quick lunch before the appointment. Halloween decorations were still up, and eerily on point.
I thought he would mostly deliver me good news since my eyes have been looking so much better. But instead, he launched into how I had to start preparing for when my implant runs out and reminded me I only have 18-24 months left of good health.
I know I don’t have a lot of time left with this implant, but it’s hard to be reminded that there’s an expiration date on feeling okay, especially when I only just started feeling better very recently. He began talking about new medications to put me on, and endless tests to go through, and I got too overwhelmed and silently cried the whole time. At this point, the doctor got weirded out and handed me a tissue and told me if I was offended by him I could leave. But I couldn’t articulate how hard this past year had been on me. That I was just starting to be able to live my life again, and the idea of launching back into everything so soon was too hard to hear. Maybe in a few months I could hear it, but for now, I couldn’t.
Eye doctor appointments will always be traumatizing for me, and I think a lot of the anger and fear I try to ignore comes flooding out in those appointments. I’m forced to constantly relive my surgeries, recount each one for them, and how they went wrong. I’m forced to worry about my future again. While day to day I try to be hopeful and live my life, when I go to an eye doctor appointment, I’m brought back to the reality of my situation.
But then I leave, and am reminded there is also a lot of life outside of those hospitals. That while I don’t have endless time, I’m still good for now, and that’s what I should focus on. When I remember that I have 18-24 months left, it sends me into a panic sometimes, to make the most out of each day before I’m back into surgery and recovery all over again. But then I remember that none of us know how much time we have left. Nothing is for certain, so maybe that’s how I should be living anyway.
With this fresh start, more than anything, I want to approach life and the people in it with a sense of openness that I’ve been too afraid to access before. When I wonder why it’s so hard for me to just let go, I go to another eye doctor appointment and remember — “Oh yeah, because my health is always hanging on by a thread and could change at any moment.” But despite all that, I’m still going to try every day to live as fully as I can, to enjoy this new freedom. And to start listing to that new voice even more.
Love,
Julia