I Trust the Timing Of My Life

Letter to Myself: One Year Later

(The format of this entry will be different, as it’s a letter to myself. Reminding myself of what happened, what I’d change, and how I’d like to live my life moving forward.)

Dear Jenny,

It’s absolutely wild to think that your surgery was 1 year ago. June 10th, 2025. It’s a date that will forever be etched into your being, not unlike a birthday. Turns out that it was more than a day. It was about 3 weeks, and if you keep reading you’ll be reminded of what ensued (and learn from, for those of you reading).

Birthdays are celebrations of life. And to think of it, those 3 weeks will be forever celebrated, honored, grieved, and mourned – because you lived through it all.

What Did Happen?

• You had a full craniotomy, left frontal lobe. The surgery itself went seamlessly (you laugh as you write this because your skull was literally opened up, operated on, and then stitched back together. Funny word to use when you really think about it). You were brave AF. You lived through one of your biggest fears – having a major surgery in a hospital.
• What wasn’t seamless was the aftermath about a week and a half after returning home. Steroid induced Catatonia. The steroid that caused the damage was dexamethasone, given to patients to reduce swelling in the brain post surgery.
• You still haven’t gone down the rabbit hole of Googling Catatonia, or using AI to help you understand or learn more about it. You lived it, and that was plenty (at least for now).
• The experience was absolutely terrifying. When you were catatonic, there were many symptoms, but the worst were the multiple horrific hallucinations. Some that you remember very clearly, and others that are more vague.
• This steroid induced Catatonia was something that took the doctors 7 whole days in the neuro-ICU to figure out what was happening. You have zero memories of those 7 days, aside from the memories that weren’t real: your hallucinations.
• You will write more in detail about your hallucinations at a later date, but what you will say for now is that they completely discombobulated your brain and body, so much so that you now have PTSD. You will also write more about PTSD, and what it’s like living with it in future entries.
• That all to be said, you’ve come a long way since those 7 days in the ICU (and then 5 days thereafter in a step down care unit). A very, very long way. You’re finally beginning to gain a deep sense of pride as to how far you’ve actually come. And while you don’t know if the PTSD will ever go away entirely, you have experienced the throes of it lessen. The worst part: it often rears its head when you least expect it to. These triggers typically happen via a conversation, but they can also be sounds, something you see, a scene in a movie, something in the media, or the news.
• The triggers take you straight back to the hallucinations, which took place in the ambulance rides and hospital. It’s taken you a LOT of time, therapy, more medical related appointments than you care to count, resourcing, grounding, and pure inner strength to be able to hold the hallucinations as memories and not let the memories take you straight back to the hallucinations themselves. Strange really, to hold a memory that wasn’t real, especially when the hallucinations felt astonishingly real.
• You hypothesize about these hallucinations almost daily. Why were they what they were? If certain events in your life had been different, would the hallucinations have been different? What is the symbolism behind them? What were they trying to tell you?
• You still fear that the Catatonia will come back (irrational fear), but it’s now a part of your story that will slowly unravel over time, one that you are determined to tell, bit by bit, when you are ready.
• (To mom, dad, & Ross: I’m sorry you had to witness what you did, and I’m sorry no one knew what was happening to my brain/body. I imagine what you all saw on the outside was very different from my experience, and it pains me that you had to see it, especially since the symptoms were undiagnosed for ~2 weeks. I can only imagine how scary that was. To witness the person you love suffering, knowing something was deeply wrong, and living in the unknown as to why.)

What Would You Change?

• This is a tricky question, because a hallucination can’t be changed. But the way you think about it can. Talk about a mind fu**.
• With your therapist, you have slowly gone through the the majority of your hallucinations and talked about what you needed in those moments that you didn’t have. Comfort, human touch, reassurance, and escape are some of the major themes we have uncovered.
• For the most part, you were alone in the hallucinations, which was, and still often feels like deep seeded isolation. Therefore, being with others & in community has been an essential piece to your healing.
• For months, you were deeply ashamed that the medical personnel witnessed your psychosis. But it wasn’t your psychosis. It was caused by the steroid dexamethasone. And until what happened to you was actually diagnosed, those near and dear to you, including yourself, were petrified and mystified. What was happening to Jenny? Where did she go?
• You feel like you were taken to an alternate dimension. One that’s only in the movies – one that’s never actually real. But in reality, you were a human being who was desperately struggling internally and externally, and not by choice or any reasonable measure.
• Once the doctors figured out that your symptoms were in fact Catatonia, they immediately began to treat it, and as soon as they did the hallucinations stopped and your memory came back. Your real memory.
• Identifying what’s real and tangible and what’s not, especially after coming out of weeks of hallucinations/psychosis, is like coming back to a whole different plane of existence. One that you’d lived in your entire life, but where almost everything somehow felt completely estranged.
• It truly is life changing to be living your daily life, show up to pre-op, be put under anesthesia for 8 hours, have a tumor removed from your brain, and wake up again surrounded by nurses, hooked up to IV’s, and on copious amounts of medication. Then to go home less than 72 hours later and boom, like a nightmare, end up back in the hospital to truly live what you hope will be the most frightening life event that you’ll ever have to endure.
• If you had the power, what would you change? All of it and nothing at the same time. Not that you’re grateful for these hallucinations that often cause debilitating PTSD, but you are confident the hallucinations were symbolic and intrinsically connected to some of your deepest fears. You lived them (via hallucinations). And what’s life if you don’t live through, or experience your greatest fears? You honestly don’t know how to answer that, but now that you have, it’s given you a LOT to reflect, re-wire, re-shape, rewind, and unwind.
• You often forget that the brain is an organ. The power of this organ, the dimensions it can take you, completely surpassed what you thought could be humanly possible. Your brain, body, and spirit may forever be healing from the hallucinations and PTSD, but the healing work is happening. You’re doing it. You feel it every day – big and small. To imagine, dream, wonder, and play with how and why you’d change what went through your brain and body has been a difficult yet essential journey. One that you may be on for the rest of your life. But what a story it has made and will continue to be…

How You Would Like to Live Your Life Moving Forward

• There’s the unrealistic version and the realistic version.
  • Unrealistic – erase it all, throw it away, pretend it didn’t happen, bottle it up, act as if you’re fine.
  • Realistic – slowly and gently work with what you went through, be with all of it, remind yourself that you’re safe, learn that the world itself is safe (even though it’s often actually not), and re-learn how to trust yourself and the people around you. How do you do this? You can, and most likely will, write an entire blog entry just on this topic itself, but in sum, various forms of therapy, reframing your thoughts and beliefs, and using your body, senses, people, and objects as grounding resources.
• Big Picture:
  • Jenny, hold on to all of your life experiences that are raw and real. Living in a world that is real and tangible, not a hallucination, is a beautiful thing in itself. Feel it and live it wholeheartedly. Learn from the hard moments and trust that they won’t always be hard. Feel the genuine moments of beauty and pause to be with them. Life, while highly complex, has a certain simplicity that can be found when you slow down. A simplicity so beautiful, so delicate, that it’s almost like a gentle whisper saying, Jenny, you are beautiful, you are brave, and you lived through something that the majority of people haven’t.
  • Your hallucinations were unique and while they may have represented themes you wished to never uncover, they were unveiled in a way that has put an entirely different perspective on the way you see things, and how you’d like to live your life moving forward. Do you know exactly what this looks like yet? Absolutely not. Do you trust that it will all unfold exactly as it should? Absolutely.

To this next chapter in life:

You vow to never fear yourself or your power. You’re naming this because you’ve realized that the past year, and righteously so, you’ve lived many parts of your life in a fear based space. You are discovering the depths of your fears and ultimately learning to love yourself so deeply that the fear is somehow becoming like lingering stardust. An essence that may always be there, but quiet, like a spirit, and no longer haunting.

A friend of yours recently shared this quote with you and it couldn’t more perfectly align with your feelings around healing & fear:

“To heal is to touch with love that which was previously touched by fear.” – Stephen Levine

Moving forward, you promise to walk every step in wonder, awe, and fierce love. Never doubt yourself, and when doubt creeps its way in, you’ll read this entry.

Jenny: you are loved and surrounded by love. And on this day specifically, you choose love. A love that surmounts the surgery and diagnoses that followed. Love that will lead you to whatever’s next in this life that you are living and the life that will continue to unfold in front of you.

Mad Love,

• Jenny

Thank you for reading, honoring this day with me, and continuing to witness my healing journey.

Until next time.

Xx,

❣️