Monday, August 19, 2013

Perspective




Ben taking a walk around the 2nd floor with his physical therapist.

Today when I arrived at the hospital I could tell Ben was feeling better, much better. His face was light, his eyes bright. A smile curved at the corners of his mouth.

I knew immediately he had good news.

Ben’s putting the hospital staff out of business. He is a poster child for recovery. He’s being discharged tomorrow (and honestly, if we wanted to leave today, they’d okay that too). The physical therapist, nutritionist, recreation specialist, and intern have come by and said, “Well, you’re looking good, man, you’re good to go.” I think they’ve even sort of shaken their heads in disbelief.

Truth be told, I think Ben is an unusual patient at Shriners. Believe it or not, his situation isn’t as dire as some.

We’ve had more than our fair share of time at hospitals. Ben has been a patient at Alta Bates in Berkeley, Children’s in Oakland, Shriners in Philadelphia, and now Shriners in Los Angeles. There’s something different about hospitals that cater to children only. There’s something more heart-wrenching about the children and families you see in those hospitals.

When we were at Children’s Oakland for Ben’s brain surgery ordeal we were newbies at this hospital business. I’m the type of person who likes to connect, who needs to connect. But a hospital, especially a children’s hospital is not a place to connect, especially not with the other parents. For one thing, everyone is entirely consumed with anxiety and worry about their own child. Many parents are on edge. Most just don’t have one extra molecule of space for your story or your child’s story.

And then there’s the issue of whose child has the worse situation. Here’s the deal: If I ask you why you’re here, and you say, “My child has a brain tumor,” then you win. I mean, you lose and you win. You have the worse condition to contend with. But if you say, “My child broke his ankle,” then I win. And guess what, I really don’t want to win. Do you know what I mean? It’s a terrible, terrible place to be in, so it’s just easier to not engage with the other parents, if at all possible.

When we were at Children’s Oakland we were there for so long we had to connect with someone. So, we connected with the nurses and physical therapists and chaplains. I would ask them questions about their lives or tell them something about us that wasn’t visible on the surface or in Ben’s medical chart. We’d try to find safe ways to make connections and get support and solace, that’s what our friends and relatives were for. We barely looked the other parents in the eyes.

Last time Mark was here at Shriners Los Angeles, he encountered a dad who hadn’t learned that yet. He wasn’t a newbie at hospital etiquette, but for some reason he hadn’t gotten the memo. He and his son were sharing a hospital room with Mark and Ben, and Mark had to hear their whole story, despite his desire to do anything but. There wasn’t an easy way to get out of it. He was stuck there. They all were. And guess what, the other dad won...his child had the worse condition, and still he didn't get it. DON'T SHARE. (No boundaries, right?) And when he returned home, Mark shared with me how uncomfortable he felt when that dad, just seeking companionship and connection, reached out and in way too far.

The fact is that children’s hospitals are brutally painful places. Despite the cheerful d├ęcor, the play rooms and video game consoles, you cannot escape the unfairness of life in a children’s hospital. Here at Shriners, where patients are given FREE* medical care with some of the most innovative techniques to be found anywhere, there are children from every ethnic group, many third world countries, and speaking many different languages. And, they have many different afflictions, most of which make Ben’s situation look like a walk in the park.

It’s a strange thing. In our world—and by that I mean our relatively affluent homeschooling, organic, politically liberal, well-educated world—Ben has possibly the most serious condition of any of his friends. He’s had more surgeries than any group of people I know. I think almost everyone in our life views his situation as one of the scariest and hardest situations that they know of.

But, one hour in Shriners Hosptial and your view of hardship changes.

When we arrived at Shriners Philly for Ben’s first spinal surgery it was about a month after the earthquake had happened in Haiti in early 2010. Teams of Shriners doctors (and doctors from many other hospitals, for that matter) were flying down to Haiti to care for the devastated populous. Shriners had actually been flying children and their families up to the hospital in Philadelphia, an orthopedic specialty hospital, to give them their care. We were confronted with children in wheelchairs, all with recent amputations, wheeling around the atrium, the play areas, the hospital rooms.

They were beautiful, these children. They were happy. I’m not kidding, they were always laughing and happy. I couldn’t believe it. That part was really different. But seeing them and their bandaged stumps, that was truly one of the hardest things I’ve ever experienced.

Shriners LA is not much different. It’s not post-earthquake, at least not of epic proportions. But each child there, each family, is experiencing their own personal trauma. Last Wednesday, when Ben and I arrived in reception for his pre-op appointment, he was the only child not requiring a wheelchair or walker or arm braces. He was the only one.

It put his upcoming fusion of 12 vertebrae into some kind of raw perspective.

I used to have to take anti-anxiety drugs to manage this reality. But I’ve found on this trip that other people’s situations are not getting in. My defenses are stronger. I have my empathy turned down really low.

The other thing, frankly, is that I know that here is where these folks are getting some of their needs met. The doctors are so skilled and these children are getting the best medical care. It’s a place full of blessings, really.

We’ve spent the past five days ensconced in Ben’s quiet private room. There are hardly any long term patients here (he was literally one of only three over the weekend…it’s a bit odd, really). The buffer between us and the rest of the world is nice and thick. I like that. It helps with healing.

As for now, Ben and Mark are enjoying an old favorite activity from our first lengthy hospital stay, watching reruns of Family Guy. (I just told the nurse that it offended me 7 years ago and it offends me now!) But, it makes them both laugh, and that’s just fine with me. Seems entirely appropriate to be doing this on, ostensibly, hopefully, our last night in the hospital.

And by the way, I told Ben after the intern checked him out and told him we were free to go whenever, I looked Ben in the eye and said, "You're too good at this, mister. Time to get good at something else."

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*Shriners Hospitals (And yes, I am spelling it correctly. There is no apostrophe.) have a very interesting history. If you are moved to make a charitable donation, I urge you to do so. This institution has taken a big hit in the current economy. Half of this hospital is closed down and that is a damn shame. We need more institutions like Shriners to innovate in medicine and care for underprivileged children.


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