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.