Wednesday, September 18, 2013


It has been quite a while since I shared with you... since I was able to share with you.

Two Mondays ago, I had an MS meltdown. People have called it an "exacerbation..." I wouldn't know, I don't think I've ever had one. It was certainly a strange one. But whatever it was, it was No Fun At All.

My wife took me into Urgent Care, because I needed catheterization. Urgently, as you could imagine.

For "urgent" care, they certainly attended to me non-urgently. I won't call it "care..." I did way too much sitting around and waiting. Sit in the waiting room. Finally get taken into the Care Zone, to sit in another room for the filling out of forms. Which took a while.

Then I was taken to another room, which at least looked more like a treatment room. But apparently for me, it wasn't, because all I did was sit there. In my own wheelchair. For a long time.

At some point, I heard some Medical Types chatting between seeing patients, as Medical Types do. I wheeled myself to the door, and out into the hallway, where I was maybe 10 feet away from the chatting Medical Types.

I said to them, politely but directly, "Pardon me... They call this place 'urgent care.' I need care urgently. I need catheterization, urgently. If you don't catheterize me NOW, I'm going to kill myself. Or you. Your choice." And rolled myself back into the "waiting" exam room.

In very short order, they came and got me. And catheterized me.

Getting people to understand "urgency" is surprisingly challenging, in a hospital. "I gotta go NOW" doesn't work. "I need a urinal, or you're gonna need a mop. NOW." That works. (I know, I've used that very line, in the hospital.)

Anyway, the urgent care folks, in only a few moments, said "You're beyond us. You need a hospital." So they sent me over (no lights/siren, fortunately), and it was a nice quiet night in the ER, I was the only "customer."

So a few days of various medications, including IVs (they leave a shunt in your arm, because it makes it easier for them to use it, and boy do they use it) some rather nasty manual interventions in the "elimination department," and trust me, you do not want details (ouch), and in three days, they popped me over to the Rehab ward.

Very interesting adventures, in a Big City Hospital, and in a rehab ward, where in many cases "urgent" means "I need to get to a commode" or "I needed to get to a commode but you didn't get me there in time and so now you'll have to clean everything." They go way out of their way to keep anyone from getting to "I've fallen and I can't get up."

Big City stuff: Most of the doctors here don't care about you. They care about your symptoms as expressed by your lab reports, or simple binary answers like "Can you urinate?" They not only have no time to talk to you, they have no interest in talking to you, the human. They only want your data, you the data source. Oh yeah, they call you "the patient."  My own beloved private physician-cum-acupuncturist has only so much time to see each patient, I get that. But the acupuncturists can't treat you, can't even diagnose you, unless they can contact you, the whole person. And you don't get up off the treatment table unless and until you're better.

"Better" doesn't seem to be in the vocabulary of the Big City Doctors I've met here. A couple of them are very much healers, who care about you the human, even if they're working on/through your symptoms. But many of them don't... Punch the card with symptoms & such, that's all they care about, PUNCH they're done, and they wander off. Without even saying "Goodbye," much less "I hope you feel better." There's the forbidden "B" word again...

There's a lot about physical therapy and occupational therapy (which, thank God, thank every god, is a misnomer: I was terrified that it'd be all about "going back to your old job," it's actually about self-care like teeth brushing and bathing) that's very useful. That's immediately useful, to people who have been "accessorized" with the wheelchair like me. Here's how to transfer from a bed to a wheelchair, and back again. Here's how to transfer from a wheelchair to a commode, and back again. Very useful, that. Here's how to transfer to a shower bench, and here's the kind of shower bench you want, and here's how to use the shower-curtain liner with such benches, which stick over the edge of the tub and thus across the "curtain line." Here are ways to approach "where does the cutting board go, when you have problems standing at it, the way you've done before without thinking, in previous years. You can tell immediately that it's a good, and useful, and valuable, idea.

But two things become clear immediately: Physical therapy is about physical problems. They don't do well with neurological problems, probably because their toolkit can't address/improve neurologically imposed problems. How exercise works to increase muscle mass or dexterity, this has been known for millennia. Do this, you get stronger. Poof—done! Like magic!

Well, nerves don't work that way. And, more importantly, if my nerves can't make the muscles fire, the known-for-milennia muscle-building techniques can't work. So, as Steve Jobs was known to say, you have to "think different."

Well, they don't. And if you do... they can't deal. With the thinking, or you.

What has been the most interesting thing about the "rehab experience" is my own process. Me, I need to understand before I try something. And what's most important, if my own direct experience is contrary to their explanation, I need to understand. If I understand incorrectly, I'm happy to change my understanding—explain it to me. Especially More importantly, as Jobs might have said, "explain different." For example, you tell me to do X. To me, X feels dangerous. It neither feels efficient, easy, or safe. I do not dispute your qualifications or training, or the evidence of your senses. But the evidence of my senses does not match what you're telling me.

That, they can't understand. At all. They lock up, just keep telling me to do it because they told me to do it.

And that, for me, makes it a non-starter. Ab initio, as my Latin-speaking scholar would say. "From the beginning." Not just a non-starter, non-startable.

As a friend of mine once said, there is only one "rigor" (rigorous thought process). There isn't a different rigor for music and physics. There is only one. And here's where I and the PTs seem to be, sadly, unreachable.

I love my translator (transport chair cum walker, sometimes AKA "rollator"), and for at least a couple of years has been a close and trustworthy friend.
It has brakes like a bicycle, which when you actuate it, work 100% of the time with zero failure modes. If anything goes wrong and I fall forward, I face-plant into a seat. Or, better yet, catch myself on the seat before face-planting. In walker mode, it can't tip forward and heave me over the front wheels unless you go into flaming-moron mode and try really, really, really, really hard to make it do that. In "real world" mode, it can't happen. Admitting that I'm different now that I was then, it has nevernever, failed me. In any way. Ever.

Well, the PTs don't like it. They like the standard walker. It has a narrower wheelbase, no brakes, no seat.
I hate it. My "walking" speed with it is measurably slower. I've nearly fallen FOUR times, trying to use it. I could tell a detailed story of my point-for-point refutation of its "features" and "virtues," but... DUDE. IT NEARLY MADE ME FALL FOUR TIMES. Shall we go over that again, using those charming "psychological acuity" test materials with nice big, brightly colored numbers?

Truth be told, while on the rehab ward, I'd only almost-fallen twice. In very rapid succession. Which makes their "not listening to me"... better? Because I'd almost-fallen only twice?

So, I really wish they would have connected with me. And here I am, typing this from home (finally!), quite immersed in trying to reconnect with reality. (Took me two days to finish typing this, but at least I did.)

Which is, itself, also quite the story... but as Alton Brown likes to say, "That's another show."


Muffie said...

What an experience! I've been fortunate with both hospital and rehab situations. My PT and OT both worked with me, not against me. "Tell me how you feel, and we'll adjust it." That was their mantra.
My son-in-law is an ER doc, and I can tell you, he's kind, understanding, and knowledgable. His first thought is of the person he's treating.
Next time -- come East, young man!
Glad to have you back, and take care of yourself!

MelissaThinks said...

Hi, I read your blog all the time and never comment. Tonight I feel bad about that. I want to tell you that reading your journey for the past three years has made me feel less alone. My symptoms are different , aren't all of us MSers different, but I feel a kinship to you.

Thank you for your openness and honesty and bravery. Your still present sense of humor tells me that you are going to be....around for a long time. I hope that is a good thing in your eyes.

Again, I,thank you.