I’m in that place underground many of us go to when life is too much. Most folks turn off the phone, which is really healthy to do…or unhealthy if one is completely cutting off their support system. Some do everything they can to avoid going underground by over-socialization or drugs or drink. Some go underground and choose to stay longer than the time that is needed. There are probably lots of reasons for that.

My place underground is a dark room with camping cot and a lit fireplace. I seem incapable of turning off my phone. Plus if I did, people would worry. I am infinitely impressed with how much care I am getting post-hospitalization. At the same time, there is so-o-o much red tape. I wish there were better, human explanations about pain management, drug side effects, the transition to the primary care provider. The 35-page discharge paperwork is stapled into one stack, holds too much information in some areas and lacks information in critical areas. Who can parse that with a brain injury? There are so many bodies involved: surgical team, trauma team, home health team, pcp, hr, state, lawyer – there is no way this will go smoothly. I am on the phone, in the dark, by my fire trying to work through the system. I thought I was supposed to rest.

“The best advocate is yourself”, nurse John told me. I think I know what this means now. Whispers from John and other providers who share their wisdom have created a slight navigational system for me. The hospitals are there to stabilize your body, not to look at your long-term health. The surgeon might have multiple procedures in a row, so it won’t be unusual to feel dehumanized as they get you in and get you out. The real healing starts when you get home.

After listening to why various providers love their jobs, why they left certain areas of the system, I feel a little more validated and empowered. This is not just my experience. I can’t expect anyone to take care of this stuff. I have to be the one that comes up with the questions – whether that is a good thing or not. It’s survival.

Within a few weeks, I’m going be cut loose from home healthcare and I won’t have those kind people for long conversations to help me navigate. So I’m drawing a map with the clues that come in every few days. I’m using my refined IT research skills to study when I have the energy to be online. The map might be burned in the next follow-up visit but I’ll just start it over again.

All big systems will be extraordinary and also deeply flawed. The individuals within the systems can still be precious. It is important to keep a perspective, even after I want to throw the phone across the room.

Here is a credo to write on the sails of my ship but there will be no control over the speed or direction of the wind.

CREDO
Rest
Water
Healthy food
Walks
Gently test the limits of my stamina
Repeat

It is verified. My brain has returned to center. Early mornings, when I don’t feel drunk walking, there are rays of sun stretching through my body. I lay in bed at 4:45 AM and feel like doing a jig. I learned not to do a jig or the energy will be gone by 10 AM.
I wrote that sentence a week ago and today the crash didn’t happen until 11:30am.

Creativity – at its very core – is movement. Healing is like this too, a seedling sprouting in the dark, fresh green revealed in the morning. It’s not something we do. It happens by itself in the blessed magic of sleep. So, like a gentle gardener, I am supposed to encourage and foster and wait but never push. The towering Douglas firs sway as I walk around my condo complex with a cane to assure my balance, their familiar yet holy hugs permeate my body.

I pray that I grow strong in time to return to work.

---

• Precious card from hospital housekeeper, says, “Everything is changing for the better.”
• Spirit bracelet to protect arachnoid mater layer, which resides next to the dural layer in the brain.
• Sasquatch from the totaled car, hugging a treasure box.
• Treasure box: fragment of safety glass, flower petals from co-workers’ bouquet, staples from my incision, hospital bracelets
• Redwood mist, spirit wolf, spirit bear, water
• Postcard of light and joy from Fanning the Embers, the annual storyteller’s retreat.

From Neurosurgery office.

I’ve entered a world that was there all along without my knowing it. It’s a landscape with few trails, as they keep telling me, everyone’s experience is different. This is why no one can tell me what to expect or how long it will take. Or maybe they don’t want to tell me because they don’t want me to worry. Sometimes I get blank stares when I worry anyways that I will not be able to work when FMLA runs out, and lose my job.

I went back to the ER today because I had a new, sudden symptom. I was so weak and dizzy in the kitchen. I have to sit down in a chair and think a little bit until I realize that I am nauseous too. I am shaking and close to passing out. I take the nausea medication they gave me that I’ve never used (consciously). The nurse on the line tells me to call 911. The EMTs are very friendly and happy to meet me again. I am disturbed about the fact that I have no memory of meeting them. They ask me if I want to go to the hospital and I tell I just want to live.

Side note: I am not displeased with all this attention from three good-looking men in my living room.

Everyone agrees that since I live alone, it’s best that I shouldn’t have to lie here and worry. Worry itself could be bad for my health. See? Not knowing is worry too. My neighbor takes me to the ER. Another angel. I get another CT scan and the black butterfly has moved closer to center in my brain than ever before. I’m getting better. Yesterday wasn’t made up, when I aced the speech pathology cognitive tests and thought I was feeling energy returning.

No one knows why I had vertigo while sitting on the couch on the phone with the nurse. It wasn’t my heart. It wasn’t blood sugar. It wasn’t another brain bleed or a stroke. I am hoping it is my brain recalibrating, because movement is movement and movement is disturbing and the brain does not want to be disturbed. I will see the neurosurgeon in nine days.

The red tape around FMLA is tangled. The red tape in HR is tangled. Yesterday, the red tape around getting pain meds refilled was tangled. The lawyer is probably on vacation because he left his coat here before Xmas and never came back. Managing being sick has become a part-time job and I’m angry that I have to deal with it while recovering from a brain injury. I want to get audiobooks from the library, but I can’t figure out how to fix my library card memberships, so the cards just sit on my side table.

I am frustrated that there is no road map to all these ‘care teams’, so I create a template with questions and things I have learned the hard way, and send it to the hospital as a gift from a degreed Instructional Designer.

I hope everything will be OK, because then this will be a good story for all to read. I shouldn’t say that because of the goodness that has come from all the people around me.

These are the woods I am in.

The owl swoops down and feathers me with her wings. I wake up in the morning and relive conversations or uncomfortable events or the car crash itself again and again, and I breathe. Let the spirits in. I see myself in the crook of a passageway at the base of my skull with my drum. I am opening the way for the Spirits of Kindness to enter. I am witnessing, as any good shamanic practitioner does. And then the next day, all I can do is sleep and try not to worry. The following day, visualizing healing images of the day before may not work. I have to be open to what is here today, around me now.

My cousin and I planned a New Year’s weekend visit long ago and now she is quietly cutting vegetables in my kitchen while I hang in here, waiting for the next time I can take a pain pill. The fire has been going for days. She gets the cozy nest by the hearth, and I get the electric blankets on the couch.

One friend sends a wonderful list of books and another sends a note all the way from Germany, asking how she can help. Now she is hunting down an audiobook for me. When I am alone, a neighbor comes in at 11am every morning to make sure I am still here. Others call throughout the day. I’ve had five different people get me to and from both hospital visits and a doctor’s appointment.

I’ve heard the words:

I am glad you are still here. (so many times)
Thank you for letting me help.
I am thinking of you.
I am giving you space to heal. (because screens literally hurt my head)
Sending love.
Checking in.

And many, many more sentiments. So many have offered interesting ideas in how to manage various difficulties. Each gift means so much to me. Through it all, I get to know you a little more. I get to share intimacy that may have not happened on its own. I get to hear about your lives. I get to learn about love from you.

I am receiving healing, both emotional and spiritual from you, while we wait for my brain to literally reclaim its space, for the arteries in my head to stabilize, for the pain to subside, for me to not need anti-seizure medication any longer.

I am lost in a fragile place. I am very aware that many, many people are living lives far more difficult than mine. I know how lucky I am, and yet I still face my own trials and fear.

My tears well in gratitude, for the drop-ins, the little treats, the prayers, the gentle ears, and for my family.

You hold me in your web of love. It makes me feel worthy.

I’m telling you, I didn’t ask for this. Most major things that happen in life, we can see them coming. Or if not, afterwards it really does make sense why it happened. Not this time. I’m pissed. I worked so hard, so hard to get where I was. So hard. I had a job I loved, a great boss, friends I love, shamanic work I love and a home I love. I even had a brand new activity (doing soundscape for assisted living) flowering in my life and in my heart. And then, I just got swept off the board and set down on an entirely different one.

I thought when I got home from the hospital that recovering would be a walk in the park, a few weeks. But the forest isn’t clearing and every day I discover new things – not only about my limitations but about what happened to me in the past month. I can’t believe it’s been a month. I can’t believe my friend spent five hours trying to figure out what was going on with me and what to do, searching through my paperwork for the right phone numbers to call and labeling all my medications and finally getting the green light from several different parties to call an ambulance. That must have been terrifying, traumatizing. Then she opened up my phone and texted everybody, whether she knew them or not and my mom called the last person who brought me to the hospital and people sat with me for a day while the nurses had a hard time waking me up to give me neuro checks. And then I had surgery and I woke up and now I know why it wasn’t so unbelievable that my brother was about to arrive in two hours from California. Because all that time had passed and I didn’t know it. 

I learned that the brain does not like to be disturbed. The brain says fuck you. No extra blood in my space. No pushing me to the side. No drilling holes into my skull to remove the blood. No going through my arteries to seal them closed. All of those things make the brain angry. So as my wonderful, tender and nurturing acupuncturist says, there is healing from the accident trauma and also from the surgeries. She leaves me on the table, and and it takes over forty minutes before I feel my energy, like magic, come back to center. She invites me to come back the very next day which I cannot do but I will as soon as she’s back from vacation. Because I don’t know if my energy stayed in the center. 

Another friend took me today to get the staples taken out of my head and I don’t think my brain liked that either because my headache spiked. She took me to a park I really wanted to go to and I joked that I’m like a dog being taken for a walk, breathing in that beautiful fresh air and the smell of the water and the birds. But then it became difficult to walk without stumbling and I needed to get home to the couch. 

This is not a fun blog. But the providers and my friends keep telling me that I look great, that my spirit shines through. Looking great is now on a wider spectrum, now that I see the trajectory of healing is going to be longer than I thought.

There is no guarantee I will not have another bleed. I am now in a population that is in danger all the time. At some point I will have to let go of this terror and completely put myself in the hands of the spirits. I continue to live my life, or I live in fear. I must continue – savor each day. Still, I am full of gratitude.

Life has become small and so big at the same time, for what is so vastly important is in the small things around us. In order to function in society, we need all kinds of barriers. But in being truly vulnerable, I can see things I could not before, and one of those is all the different ways that people love. In this, there is no reason to make sense of the world anymore. What will happen, will happen. It is useless to panic.

I hold such gratitude.

Tomorrow, super-special visit from my cuz.

Yup, that’s my big message, my meaning for Winter Solstice this year. It’s dark. That’s it.

Back when I worked with homeless women, there was this young, beautiful dyke with a mohawk who had chosen to be on the streets after witnessing her brother being killed by a strike of lightning. She was a talented painter and she taught me about backwards magic.

She said, Just put things on their head, exactly the opposite of what you’re supposed to do. There’s a lot of wisdom in that – not to mention the fun.

Again, we make our own meaning. So if the traffic on I-5 slaps you to the retaining wall, you can make up anything you want to about it. If you try to watch a movie and then you are wiped out for the rest of the day you can just close your eyes and explore the darkness. Darkness is very spacious, and magic happens when we are sleeping. We think we control our world, but really, we don’t. When you wake up in the morning and your body feels a little bit of that sunshine, the beautiful feeling of sheets against your legs and back, those are indicators that some magic happened overnight. Things were mended or changed or rearranged or colored in…we don’t get to see the mechanisms of this magic. Conversations happened..I’ve been saying this all along. The reason things are called mysterious is because they are a mystery.

So we can just let go. Whatever comes. It doesn’t matter what we do or how we interpret it, because we are gonna be loved by the spirits anyways.

(Yes, I’ve been looking for an excuse to share this meme. I spent half a morning looking for it last week when I was in the hospital – I don’t know why.)

Last week I had a vision of a wolf. It’s heavy, warm paw was rested on my chest, like dogs/cats do. I own you. You are not moving. All night long. Next day, Janaki shows up with a Wolf. Janaki slaps a bracelet on my wrist and says, “This is for protection.”

Eric and Mom say, “You need to get a lawyer.”

Carol says, ‘No you will not be taking an Uber home from the hospital.”

Andrea says, “No you will not be walking to the mailbox every day until you’ve talked to your physical therapist.”

I am out of my depth, and I put myself in the hands of others. This is what spirit is telling me to do. 

When you are in the ICU, you have to ask permission to go to the bathroom every time which is a little embarrassing if you’re one of the tribe that goes – it seems – every 10 minutes. In order to go to the bathroom they have to unplug you from four devices. The one that checks your heart with all the little stickies that you will find on your body when you get home. The one that checks the oxygen on your finger like ET. The one that takes your blood pressure (the medieval torture device). And your IV if you’re lucky to have one. You’ll probably have two. I keep getting that that image in my head of the crazy criminal or superhero that rips these things off of their body and runs out of the room – but that seems silly. I am learning how to disconnect them though. I figure if they don’t have time to answer my call button, then if I disconnect myself, alarms will go off and then they will have to come.

So, I got myself into the bathroom and I came back to my bed and the very good looking nurse makes a joke saying, “Oh, an independent strong woman will take them off but you’re not going to put them back on?”

I forgot. So, I say, “Oh.. well.. independent strong women have to be careful not to blow away the men.”

His phone rings. He says, “Oh I have to go. My fiance wants to have lunch.” This makes me wildly humerated. I don’t think I’m that big of a flirt.

He says, “Do you want the door shut?” and I say, “Yes, please” and he chides me, “Should I slam it?” I don’t know what that meant. There’s lots of good cheer at the hospital. I told this story to the next female nurse I had and she thought it was very funny. She said sometimes the neurosurgeon team walks down the hallway in kind of a lock step, like one big group and it’s really weird to watch. 

There is an older white man walking the hall at the same time I am. We both have canes. I gave him a thumbs up and say, “You’re doing it.”

He says, “You’re doing it too.”

Some lady doctor tries to give me a lesson in social etiquette. She’s complaining about how dark it is in the room. This is not the first time the doctors have complained about how dark the room is. “I’m going to turn the light on now.” then, “Now we can see each other! My name is so-and-so.” Classic Pacific Northwest move.

I just stare at her like… this is the neuro floor. Everyone has headaches. What the hell.

I feel like somebody picked me up and set me back down in a freight train going in a direction, I have no idea. We think of The Dark Night of the Soul as deep things in our subconscious that we need to bring to light and deal with, or the concept of karma.. a lot having to do with “work“ we have to do to improve ourselves. Healing old wounds. But random shit happens, and there might not be any reason. Reason is created, so we can use the immense force of an event or accident and direct it in the direction we want. For instance, if I’m not supposed to think very much or watch complicated things on the screens or read a lot of books then I don’t really have a choice but to use my mental training from a long life of metaphysics.

So, I’ve decided I’m going to have a spiritual breakthrough. Ha ha ha. We’ll see. 

I closed my eyes for the whole ride home yesterday so I didn’t have to see all the possible car collisions. Today, I can sometimes still hear a man yelling down the halllway: Helloooohhhh!! (see last blog)

People get thrown into deep water and learn how to swim. Maybe part of the process is realizing the question, “What is this stuff that I’m in? Oh. This is water. How far does it go?”

I will never know because I don’t have sonar. So the only thing that matters is what is directly around my own body and senses. If I’m going to die by shark, I won’t see it coming. And I may or may not need to breathe in all this water. It might be a different kind of journey. There might be types of fish I’ve never encountered before. There might be underwater landscapes and things happening in rocky, coral villages with shimmering light filtering down through the surface. 

Another question about this new space is “How do things connect or work?” I know that one. It’s you. It’s us. As a former, former people-hating introvert, I’m here to tell you, our connections make the world go round. The lovey-dovey songs from the 70s are all true.

I’m going to nap with a wolf now.

The wind is lashing a blanket of rain against the big window in my new room where I don’t have a view of the mountains anymore. I imagine there is a plywood booth off in a tree somewhere which is called The Call Button Dispatch Booth. People sit in there with their knees against the ledge and talk to far away places.

The red light on my bed talks back to me. It says things like How may I help you? There is a button for toilet, a button for pain, and a button for water. I think the button for toilet makes that ice cream truck noise out in the hallway. Whatever I tell them, they respond by saying We’ll let your nurse know. This is not the ICU anymore. I might have to ask them to let my nurse know two times or three times. And then, my nurse is busy so they’ll send the CNA.

I think of the CNAs as beautiful young deer. They are tasked with taking vitals and relaying messages. They do not dispense pain medication. Some of them take their jobs very seriously and follow all the rules, which means that they turn the bed alarm on so that I cannot pee without supervision. If I get up the bed will say, please get back on your bed. Oh my God, I feel so mischievous.

My CNA tonight is a special woodland creature who treats me like a young deer. I’ve been informed that I am asking for help during shift change. I realize I’m a difficult person and say, I’m sorry this is a bad habit but I’m in pain.

They say, we’re just setting your expectations.

I know, I say. I’m in pain. My day nurse and I have an agreement that I will tell you when I’m ready for painkillers again instead of taking them every 4 hours. 

Please excuse the poor punctuation. Punctuation for dialogue seems so laborious.

Now I am standing in the hallway, calling out, Who is my nurse? I am trying so hard to be patient but I’m in pain.

The CNA says, I will get your nurse. This is what they do. They respond to these junkies that need their pain medication every 4 hours. She follows me into my room and tells me it’s time for my vitals. I try very hard to be nice and I say I have one more request. Could someone please, please put a sign in my door telling people to close it ? Every single person that comes in here (food, housekeeping, transport, therapist, CNAs, RNs) leaves the door open and it’s driving me insane. She says oh yes, oh yes, I can do that. I hear the door slide shut and I hear lots of squeaking noises. She’s writing on the glass. More squeaking noises. More. She comes back in and says, I wrote it three times on the door. I don’t think anyone can miss it now. I am such trouble. She’s so adorable.

I ask, This is the neuro floor, right? Like, everyone has a headache.

She says oh yes.

I say, so we should just all yell down the hallway. then She says something nice.

When she comes in, in the middle of the night to take my vitals, I imagine it’s with little cooing noises because I am a wounded deer. 

I finally meet my nurse for the evening. I like her. I like all my nurses. I remember in high school when everybody knew that you could become a nurse because it was a good job. They are young and practical and very smart and put up with unbelievable stresses. She empathizes with my headache and asks me if I’d like the window shade down. I described to her the beautiful feeling of freedom I have now that I’m allowed to walk up to the window by myself without calling the call light.

My neighbor must be one of those people that has DELERIUM written on his door because he clearly doesn’t know how to use the call light.. He keeps calling out,

Hello!! Hellooooooohhhh!

No one is answering him. It’s this horrible, horrible feeling, like what an insane asylum in medieval days used to be like. He becomes impatient and then he really starts yelling down the hallway at the top of his lungs,

HELLOOOOHH!! HELLOOOOOOOOHHHHHHH!

I found this place deep in my side myself where I can nap. The automatic blood pressure machine is no longer strapped to my arm to take measurements every hour, so now it just breathes all by itself.

Sssshhhhhhupp!

Cooooooooo!!!

There’s also a rhythm to the rise and fall of the laughter in the hallway because change of shift is a very social, very happy time of the day. I imagine lots of flirting.

Hello!! Hellooooooohhhh!

Sssshhhhhhupp!

Cooooooooo!!!

Laughter rises and falls.

Helloooooo! 

I’m no longer a gracious being of light. I want to go stand in his doorway and yell Shut the fuck uuuuuuuup!!!

Now it’s around 4:30 a.m. when I typically talk on my phone to you and my mother knows I’m going to call her soon. Don’t worry, she’s on the East Coast.

I’m more ready to go home than I was yesterday. Yesterday this doctor was proclaiming to me how he was advocating for me (big exclamation. point) I didn’t know what that meant and I felt like he wanted a medal. And he wasn’t listening to what I wanted, which is to not go home and die. Why can’t these highly educated men realize there is a difference between my being able to clean and feed myself and having someone discover me in my apartment, not knowing who I am because my brain slid to the left? I was explaining this to my day nurse, and he joked that it was probably not a good time to take my blood pressure.

But I think we have a plan now. Don’t rely on statistics and science. Pick up the f****** phone and talk to someone every four hours and let them know that we are somewhat sharing the same time and space .

I started to hate it here last night. But I will probably miss it too. What will I do without these people?