Ellie between surgeries.
It's been an unexpected roller coaster of a 2023 so far. In November of 2022, 9 days after Ellie's 20th birthday, her shunt failed. She'd had it for literally 20 years with no revisions. I'm writing this from Children's Hospital Boston after her 6th revision since that first one in November. She's had a rough ride through meningitis/ventriculitis when that first revision got infected to External Ventricular Drains (EVDs) to revision after revision. The bacterial and protein debris left over from the infection has been wreaking havoc on the internal catheters and the programmable valve.
It's been rough. I am hoping this is the last revision needed. They replaced the blocked valve. The cerebral spinal fluid was really clear and she bounced back really fast. Here's to hoping. For now, Ellie is holding steady. She's still just as amazing as ever and the starlight never left her eyes in this latest surgery. It did in November. At that point I realized my assumption that she'd outlive us is entirely baseless. That changed me in a deep, deep way. The call to be present and be with her here and now is clear.
Between struggling to find stable carers for Ellie and trying to get to a solid working shunt it feels like the ground beneath us is always moving. It's like trying to get sea legs.
This whole experience is such a call to really consider our lives. I learned that it can't only be about Ellie. Dave and I have to create a life that we can live too. We are getting older. It made me want to move to a warmer more arid climate - possibly back to California/Los Angeles. Right after that thought the atmospheric rivers hit the state....Dave's take was that we'd know which parts not to go back to.
I also feel like we have been living on borrowed time. We've been so lucky to have had 20 years of no revisions. Hindsight is everything of course.
We are supposed to go home today. Ellie's got mixed feelings about it. She has been so very tired and a bit irritable as a result of unstable intracranial pressure. The image of water moving, rivers flowing and getting blocked comes to mind. Various areas of the country are awash as well. It's all fractals.
If there is no solid ground what do you do? I don't really know.
I can tell you the things that have shown to be lasting and real are my relationships with Dave and Ellie and my business partner, friends, and my clients. All people in motion, on their own rivers.
Seems obvious it's all about human connection beyond any routines or expectations of what the next day will bring. I still plan things. I just signed Ellie up for camp in June and it felt like unbridled optimism to do so. I'll be prepared and responsible and on top of things I have planned. But I don't quite trust in my plans.
It's been very humbling. I can only trust my inner knowing, be sensitive to, curious about, and responsive to the conditions that present themselves. I do feel a grinding down my ego and any arrogance I may have about control. That's probably a good thing.
The contemplative practices I learned as a teenager are put to the test too. Mindfulness meditation practices actually do work - they reset the brain and body to reduce inflammation, etc.
Discipline within the flux of a storm. Can't get into a regular routine so be opportunistic in the moments of quiet to fit things in. Like right now, writing this.
How do you deal with living on ever shifting waters? I'd love to learn from you.
Love,
Kathryn
2 comments:
Dear Kathryn,
Thank you for the update. I hope by now you are home and Ellie is recovering well.
I loved your image of the waters moving, and how you related it to inter cranial pressure (!) but also I think to the geography of people connected to and caring about each other. And "water finds its own level" - when one person's resources are dry, it can be so sustaining to be replenished by someone whose personal 'well' happens to be full on that day.
I also just read your post from last September.I was interested in your conclusion that the disable population has outlived the available infrastructure. I live in a country with a better safety net but the vulnerability disable people have to abuse and sub-optimal care here also present here. Protecting the vulnerable is a human rights issue everywhere.
I wish I had something valuable to say about learning to live with ever-shifting waters. It sounds like you have already learned. I suppose it's the daily remembering of that which is tough. A daily yoga or meditation practice could remind you of that. Re-reading Eckhart Tolle could help, too.
Thank you Kathryn for your insights which I appreciate so much. Best wishes to you and your family.
Hi Dorf, Thanks for your well wishes and your thoughts. Ellie is recovering slowly but surely. It's in the little things now day to day especially with her regaining energy. It will come. We are catching up. A great many things were put on hold in that time of the surgeries so we making up for lost time.
It's interesting the connection you draw between the image of ever shift waters and water finds its own level. Not sure how to take that. It is true we need to maintain a positive outlook without being toxically positive - meaning not to acknowledge the suffering that was and is still present to a different degree. I have not read any Eckhart Tolle. Maybe I should?
Regarding abuses of the system and the disabled. You have stumbled upon a source of bias (in the United States) about the vulnerable among us. There is an implicit view here that we must be fearful of them - the disabled 'other', wary of them, lest they abuse the 'hand out' given to them. Afterall, what are they contributing? They are not working. They are not "contributing to the greater good" and therefore 'less than' versus equal citizens deserving of the same resources as 'working' citizens of the commonwealth. We are not great to our elderly either... This is the thinking that keeps us from looking at the systemic issues. Instead humans have tendency to place the blame on the individual if they are not 'successful' and especially if they are poor and even worse if you are disabled there is a question as to whether you are 'worthy of care or regard'. It's dehumanizing.
This has a very long history in our country for justifying our ill treatment and derision of under supported groups.
I am not saying that no one ever abuses 'the system' - that would be naive. But if the system is being abused - is vulnerable to abuse - then it's a faulty system and is deserving of re-evaluation and resources to improve so that the support it was constructed to give is equitably given. I'm trained in organizational psychology and assess systems for a living. I can tell you - effectiveness flows from structure for a start. A systems view of our interconnectedness as a species across difference is something that everyone needs to consider deeply.
I won't go on - but thanks for sharing your thinking here as it allows me to highlight - as I hope I have - another view - a view from the inside - once again.
I agree - daily practices are good - I have many - and will keep using them. I am working to become more and more disciplined with my time.
Thanks for thinking with me here,
Kathryn
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