Is liminality the new mundane?
Well Charles, good news, my life continues to be good for literature with plot points successively unfolding.
Though I’m a little concerned that whoever is writing this life is a bit enthusiastic with the twists…
Saturday evening I finally finished satisfying myself with the state of the Help Hope Live crowdfunding campaign and spent the remainder of the day and much of Sunday getting the word out to the first round of folks.
On my way to bed last night, head a bit spinning as I attempted to wrap it around appropriate next steps, I felt a little drunken but relieved at least to think that with a Monday I would be in a good position to refocus, prioritize, and take the next steps on this pathway of Transformation 2020.
It seems it wasn’t long ago on these very pages I was starting to write about cresting the ridge on this journey, a view of the valley opening up below. Now I’m wearing a mask – yes literally, a disposable medical mask – and feeling a bit lost again in the woods.
On the way to bed last night – Caroline and I on our second solo flight – my body dropped into an all-too-familiar autonomic dysreflexic distress. It could’ve been worse and has been in the past, but this meant last evening, an additional 90 minutes or so of initiating Caroline into the urinary leakage, overwhelming redness and sweat and spasticity that passed some funky particulate in the urine and possibly some rich dinner foods through a slightly dehydrated upper intestine.
We will likely never know the source of the dysfunction with any certainty, it might’ve been either of those things or something else. Nonetheless it created a nice little dance for us, pushing both of us passed our bedtimes and into the worlds of the weary.
Fortunately it passed without leaving any particular residue beyond our own tiredness, Caroline made it home well enough and I fell to a long and deep sleep string only in the later hours of the morning today.
As I did stir, just around 7 AM, I woke to the new news, the literary excitement that I know Charles will meet with mixed emotions, both sad, and elated.
Britni graciously came to get me out of bed yesterday and help me through the morning and through lunch and into the early afternoon, as she does regularly these days every Sunday, Monday, Tuesday, Wednesday, and Thursday.
Waking from sleep I noticed that I had not heard the front door this morning and wondered hopefully that everything was all right. As I sat up I found her answer waiting there in the text messages from an hour before…
I’ll sum up: baby with fever, Britni with sore throat, body aches, and low fever. She had been trying to reach other care partners to see if someone could cover… Call me.
Those seem terribly familiar for some reason today… Oh yes, pandemic symptoms. The very pandemic that has me contemplating my own mortality of late.
“Stay home love, I’ll talk to you soon” I said, mind beginning to spin like a lighthouse looking for something practical in the fog.
Symptoms today means almost certainly I was exposed yesterday, at the very latest. Now I faced the prospect of being a contagion myself. I texted the team to report the suspicious symptoms and reached out to my incredible doctor.
Mike is on the front line of working with systems to improve healthcare as a part of his daily living and breathing. These days he is on the front line of helping to organize the necessary research and efforts to meet our collective challenge embodied in the pandemic. He also has a clinic but has reduced his patient days to one day a week in efforts to balance a schedule that has been ballooning with engagements over the last few years.
Mike has been my doctor for about a dozen years and has been a godsend in that regard.
As confounded as any aspect of my life might be, it is relationships like Mike that will always bring me back to the profound recognition and gratitude of my exceptional good fortune and privilege. Mike and Cassandra, and Caroline, and others of course, but we will get to that…
This morning though I know on Monday morning in pandemic time Mike has probably got 100 things on his plate by 7:30 AM, I reached out by text and called. A moment later the text came back, “call you in 20.”
My head spun a bit, waiting for that time to elapse. I turned to meditation, checking email, and following up with notes for Britni and the team. I called Ahlea just to give her the update. 40 minutes elapsed and the phone rang.
Cassandra had already volunteered to come in after her morning practice. Mike advised – she should come in and sterilize any surface that a caregiver might touch, you should both wear masks, and she gloves, and you should be all right.
The pandemic virus was one of four possible diagnoses he suggested. 75% chance we are in the clear, I thought, I can work with that.
“I’ll send you places she can go to get tested.” He said. There are no tests to be delivered to the home for someone in my condition, and they wouldn’t test me anyway as I’m not showing any symptoms, nor am I a healthcare worker. I do think the case could be made for the latter.…
My head began to clear. Yes, if she gets tested and is in the clear, then we are all in the clear, at least from this vector, if otherwise, otherwise. She is not in the clear there is a good chance the virus has spread to I and three other caregivers, likely two other family members, a roommate or two, and possibly others… I’m fascinated by the growth patterns of a global pandemic. Hopefully not too fascinated.
So yes… Plot twist.
Rather than rising to organize the workday and proceed with coherence, I would stay in bed, thanks to Cassandra, only until a little after midday.
We are scheduled to train the fifth member of our care cohort tomorrow evening. Of course I have notified her of the pending questions, and we will learn in the morning if she will still be with us. Caitlin is restricted on her hours by other work which leaves Cassandra and Caroline and I to sort out the next three days of my mobility and avenues for engagement.
“Oh yes” I remembered this morning that’s why I wanted a phone with a bigger screen… (My phone rests in a bracket next to the bed at night giving me access to communications and other apps when I sit up. A larger screen would be useful for reading longer emails and other text.) Certainly not an urgent matter, it just crossed my mind.
Getting everything settled at least the next 90 minutes or so with the team after talking to Mike, I reached out my friend Katie. Yesterday she said she was hopeful she owned her last phone, done with the product lifecycle approach, she would make this one survive as long as she could.
I was feeling a little traumatized and just needed someone far away, with a spacious listening to help me just rest in the reality of my situation. Calling Katie was perfect. We didn’t say much, just a bit, honoring and appreciating friendship. In the stillness, I found I wanted to cry a little and did.
Life moves through this fragile body, like a tidal surge, deep and powerful. The whole perception of it arising and passing away moment to moment in my mind like shadows and light.
Cassandra the angel ninja arrived, calling from the driveway. I used the luxury of my technology (thank you Tesla app) to open the garage door from bed, getting her access to the chlorhexidine wipes without having to navigate the front doorknob.
She made her way inside, cleaning as she went, donning a mask, checking her temperature, washing her hands.
Steps coming down the hall and her beaming face poked into my room smiling even through the facemask, and we laughed and smiled and said hello and welcome and thank you and I love you, and she turned and disappeared to clean for a half-hour, cheering out as she receded down the hallway, “this is my workout today!”
I also awoke today to find that the crowdfunding campaign, launched just 36 hours before, had already raised $9000! Again, there is that privilege and grace and gratitude.
Rising after noon I was back in the liminal space of uncertainty, ambiguity, searching for the path.
A couple of dear friends from across the country called, separately, but since we were all old friends, I conference the calls together. As the lovely banter of catching up emerged, the text messages started to ping in – Britni had found her way to testing – negative for influenza, corona tested and pending results for the morning. 66% chance we are in the clear…
I found myself distracted and confused and excused myself from the call clumsily – not sure what I needed to be focused on, but couldn’t find ground in the voices of my loving friends – not with my desk, a full inbox, and an uncertain schedule staring me in the face…
I apologize later.
Cassandra made breakfast and excused herself to go running and get on with her day. A picture of grace. An angel ninja, come and gone like the wind. The house sparkling in her wake…
Alone in the quiet space, I turned to sending emails to thank those early contributors to my request for support. That felt good. Something concrete, gratitude expressed. Following through and honoring connection, the stuff of community.
In the morning I had streamed a Facebook live from bed, deciding that sharing what I was going through might be of some use for another to consider what they might encounter in this new world of ours.
I followed through on a handful of connections and email, still too disoriented to accomplish anything very concrete, I streamed another Facebook live this afternoon. Whatever becomes of me, at least I’ll go down writing, at least I’ll go down sharing anything I can find to give back.
“Should we get you into a residential care facility so you don’t have to worry about these caregiving concerns right now?” A friend asked.
I’ll think about that tomorrow, I said, today I would just be risking infecting a place like that.
More to come tomorrow…
God gets to know things, we just get to ask questions…