Thoughts from the Hospital

This is something I wrote back in July of 2021, after one of the longest and most grueling stays in the hospital for me and my daughter. I was reminded of it, when I saw

Outspoken with Dr Naomi Wolf

‘s post about her recent stay in hospital, and especially this observation:

Dearest Readers

“Did you know, for instance, that hospitals - which were (since the Middle Ages) originally in the West founded by the Church, and often by branches of nunneries — always had a ‘hospital garden’, integrated right into the architecture, whether in courtyards or as the exterior grounds? This did not just provide herbs for medicaments. It also allowed recovering patients to sit in the healing sun, and to walk at their own paces in an ever-varying landscape. Perhaps even to greet one another.”

The sentiments she expresses here really hit home for me. Modern-day healthcare, and hospitals in particular, is not only dysfunctional in obvious, measurable ways, but also in many ways that are more subtle, more about the feelings you have while being “cared for.” It has become – not entirely, as there are still human beings involved in caring for one another, but to a great extent - inhuman.

Here’s what I wrote, nearly three and a half years ago:

Back in May, we had to take our daughter in to the hospital because she was having uncontrollable seizures. We figured we'd be there a couple of days... maybe three or four. Five weeks later, we finally came home.

Each day, I thought "at least I'll be able to get some work done" - writing, or even reading. But being in the hospital isn't like that. There are still "chores" to do, giving my girl her meds and meals, changing diapers, etc. But more than that, there is the worrying. The constant, constant, worrying that seemed to eat at me physically, and to take all of my attention and energy. So I didn't end up doing much work at all, and am still recovering from the physical and emotional exhaustion.

But I did have a lot of time to think. And to notice things. Here's one of the things I noticed: The Pediatric Intensive Care Unit does not have a bathroom for family members. And that's fine. It makes sense that the unit should be streamlined, with nothing on the floor that doesn't have to be there.

But here's the part that doesn't make sense - although I'm sure every hospital administrator on the planet will try to tell you that it does: In between the PICU and the bathroom out in the hall that parents use, are two massive, mechanical doors that slowly close and lock behind you as you leave. To get back in, you need to press a button on an intercom and wait for someone inside the PICU to answer and press another button to let you in.

And they always do. Eventually. It's not like they aren't going to let you back in. But I guarantee you that whoever came up with this system has ever been on one side of a massive locked metal door, and their sick child on the other. Because if they had, they would understand that this arrangement is nothing short of a kind of torture. A small one, no doubt. Not worth running to the Hague about. But real. That feeling, standing only a few yards away from your child lying alone in a bed, massive metal doors that you couldn't break through standing between you, and being at the mercy of some unknown person on the other side of an intercom in order to get back in... that feeling is real, and it's not a feeling parents of sick or injured children should be subjected to, ever.

(Note: I had posted this in a group I had started about creating “Normal Lives” for our kids, so I added this:) The doors are just one of the things I noticed. I've got a whole list of things. And I've got pages and pages of what to do about them too. At this point, you might be wondering "what does this have to do with 'Normal Life'? Or with our kids?"

Here's what: This whole... I'm not even sure what to call it, "pandemic" isn't really accurate. But you know what I mean. The past year and a half. It's been awful in so many ways, but it has also been a tremendous gift to us. Because it has revealed to us - to those of us who are paying attention anyway - some things about "the way things are" that are positively dysfunctional. It has lit a fire under a lot of us, and inspired us to want to make things better. Not just to get things back to "normal", but to do a major rehaul on what "normal" had become, even before Covid-19. It has thrust in front of our faces some of the real ugliness of what we had come to  think of as "normal", and has inspired us to reimagine it.

So that's what I'm putting my focus on now. I posted about that here, and talked about some of my plans now: 

First, to create a local, Private Membership Association school, for our 14-year-old son and other kids his age (Note: For various reasons, this didn’t really take flight, but I am still very much committed to the second and third projects);

Second, to get to work building what we have been imagining for over a decade now: A self-sustaining home and community for our daughter whose intellectual disability means that she will need support for the rest of her life;

and Third, to really revolutionize healthcare. For some background as to what I mean by that, check out the video I made, here. But the short version is this:

It is nuts that I have to stand in a hallway with an impenetrable metal door between me and my sick child every time I want to go to the bathroom; It is nuts that I have to ask permission from another adult in order to have access to medication I want for myself or my child; It is nuts that people are prohibited from publicly sharing information about "non-standard-of-care" cancer treatments, or other treatments; It is nuts that anyone has to get permission from the state in order to practice medicine or to open a hospital.

And I know that this is straying a little from the mission of the group. The reason I am posting about all of this is that, in my mind it is all connected. We are not just looking for ways to create happy, meaningful, lives for our kids, isolated from the other parts of our lives. What we are up to is re-creating our lives, period. Re-creating our culture, how we spend our time, what things and entities we are dependent upon, the extent to which we have freedom in our own lives.  

At least that's how I see it.