Hello

From a neurological experience

Hi friends,

Happy Summer. I celebrated by having an ordinary day. Yet I had three talks with friends. Very special. It is hard to even write here with the range of states and behaviors I experience. But I think it is important to try.

Some of you know I've been navigating a long stretch of health challenges, and I wanted to share a few things — for those who care, and for myself too.

Liv and I recently completed her recertification as a therapy dog. It felt good to finish something and remind myself of who we are at our best — even if some days are ruff. (Cognitive issues led to me misunderstanding the deadline for renewal, so I had to get over myself so we could keep visiting the community as a pet therapy team.)

I’m still working with doctors to understand what’s happening with my body…my best guess is hormonal issues are a part of it and not sure beyond it, as I only have symptoms and data. What happens on a daily basis continues to surprise me, and I am tired of talking about ‘health challenges’. It is still a challenge. I wish I could say it were better. I might be getting used to it. Physical therapy is helping me safely build strength and I think it makes a difference since I am moving every day with intention to build strength and flexibility. It can’t hurt, right?

Recently I saw a new neurologist who says the brain cyst thought to be a Rathke cleft cyst may not be that at all (!). Not a Rathke. Rathke. Not a Rathke. Which one will it be, no body knows!

Also interesting is that he wasn’t sure if it’s causing my symptoms, which still include daily head pain, sensory sensitivity, and pain or numbness in my hands, arms, legs, and feet, and more. He did say Not MS. And when I asked if exertion is okay or what not to do, he didn’t laugh and said, yes exertion is a challenge for you. Don’t go swimming alone. He seemed pretty thorough and interested, thankfully.

It’s exhausting sometimes — wondering:

Is it trauma? Is it epilepsy? Is it a brain mass? A hormonal imbalance? Psychological? Genetic?

Regardless of the cause, I’ve come to believe that neural pathways are always part of the answer — and part of the healing. The brain and body can (mis)fire, and when they do, some of us experience a full-blown internal storm. Not graceful. Not always kind. Sometimes hard to explain — especially when I want to be the person I know I am: grounded, present, compassionate.

It doesn’t mean we are weak, or insincere, or lacking motivation. I don’t know what it means.

With whatever the cause of these ‘difficulties’ in my body mind, I must remember that the nervous system is in a state of hyper arousal. So it isn’t a personality flaw that I can’t maintain it. It has been a real trip…realizing that this. Is. It.

I’m still learning. Did I say that Gary is the best? He is a hero in my story and always will be.

Some mornings, I meditate and breathe with intention, thinking about the next good thing I can do. I stretch. I hydrate. Sometimes I cry. Not because I have sadness. Sometimes Liv curls up next to me, and I feel the magic of the morning — even if my head hurts, I hear sounds that others don’t, and feel things that seem like they should be an emergency and apparently are not.

The only way forward is intention — and acceptance. It’s not easy. But being able to live it is a gift.

Liv and I do have beautiful moments. And also, I’m crispy, disorganized, and flustered a lot of the time. I try to be firm but kind, especially with her — and sometimes that brings up tears I don’t fully understand. It might be healing, or it might be neurological. Maybe both.

I’ve started new treatments for migraine, including medication for the worst days when I can’t keep anything down. It helped yesterday. I’m also scheduling an extended EEG and a cervical spine MRI to gather more data. Things have been stable-ish, so I am not freaking out as much and functioning a little more. The right-side pain has calmed down some, and I’m learning — slowly — how to slow down more too. How to live step by step. To practice patience, even when I feel I have none.

A longtime doctor asked me recently, “How is your core self?” And I didn’t know how to answer at first. It almost all feels like the wrong question. Though it was coming from a place of care and intention, not judgment, which I Appreciate.

But if I’m accessing peace and stillness — even through everything — then…well I am grateful. And if I’m clear on little else, I know this: I care about Liv. I care about being kind. And that’s a place to begin. And return.

I’ve added some work activities even though I still cant complete things consistently in a timely way a lot of the time — writing, outreach, and reconnecting with the world in small ways. I did speak with a couple of business owners in the last week. It’s not always easy to follow through on the simplest of commitments, and I’m still learning how to balance effort with rest. But being able to contribute meaningfully, even in bits and pieces, reminds me that I’m still here. It is also really important for me to have a career and maintain my income after building it from nothing a couple years ago. Life is humbling. I am grateful for the house, income, and people who care. Even 1 person who expresses care helps.

Each moment is the opportunity to participate somehow as long as our body is alive.

I hope to share more, but I only do a fraction of what I want each day, so I dont know when I will publish again.

To those who have checked in, sent prayers, hung with me, or simply read — thank you. Your kindness means more than you know.

I remember that I do not know much, but watching Liv bop down the sidewalk with her baby is where life is. That is grace. Watching. Listening. Dancing.

With love,

Karilen

PS: What is New With You?

PPS: I listen to this and it is really relevant.