A Patient’s Call to Action: Let Me Be Me

Is there anyone who hasn’t watched West Wing?

There’s a reason this television show received 277 nominations and 87 awards in its 156 episodes over 7 seasons. Quite simply, it is extremely well written. The dialogue, characters, and themes make the series a must re-watch every summer in my home.

One of the themes came back to me recently. There is an episode where the President’s staff are grappling with the two sides of the President, to everyone’s frustration and disappointment. It’s painfully obvious these highly talented, dedicated, and passionate individuals desperately want a clear target in order to do the work they have sworn to do for the man, and country, to whom they are committed.

The only thing getting in their way at this point is the President himself.

On the back of a napkin, no less, the Chief of Staff scrawls the solution and it’s nothing short of sheer poetry: Let Bartlett Be Bartlett.

Simple. Direct. Clear.

One could also say it’s a call to action …

Here’s the thing: As patients we sometimes get carried along with our disease, the healthcare system, the drama of our daily lives. Between trying to figure out what’s going on, accepting it, and dealing with it we lose track of why we are doing what we are doing. Is it any wonder those around us are equally befuddled?

Which brings me to my question: What are we doing as patients?

We need to give clear instructions, directions, and imperatives as to what we want, what we need and what we will accept; lest we be as lost as Bartlett.

Where on earth does one start?

I like to look at things on a spectrum. So, imagine one extreme is table stakes or “not even worth playing unless this is part of the deal” and at the other extreme is not in your wildest dreams. It’s kind of like imagining the best and worst possible outcomes. That makes everything in between up for grabs.

Possible.

Attainable.

Mine.

Simply by virtue of knowing what you want, articulating it clearly, and holding firm with a ruthless conviction, we will give direction to the talented, dedicated, and passionate folks around us desperately trying to help us.

We don’t have to know everything; that includes how to manage all aspects of our disease. Really, that’s what the people around us are looking to help us do. Just like Bartlett, when you’re surrounded by good people you really just have to point the way …

We aren’t always going to be clear … sometimes we need new language, but listen when I tell you I want to know all options … not just the ones you think I want to hear.

We aren’t always going to be certain … sometimes we need a little support, but see me for the capable person I am … not just the patient that needs your help.

We aren’t always going to be able to face it … sometimes we need a day off, but allow me the tools to manage my health, my pain, my life in a manner of my choosing.

We must keep learning new ways to get our point across, keep our circle of care strong, and give ourselves time out. But, then, we need to get our ass back in the game, shout loudly “look out world, here I come!” Yes, I am a patient. I will not apologize for what I am, what I want, what I need.

If there’s one thing I’ve learned, it’s this: When you know what you want, just about anything is possible. It matters less what it is you want and more that you figure it out and then tell those around you. Only then can you say …

Let Me Be Me.

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Pain Scale: Using it to Keep Score My Way

I remember it as clear as if it happened a few moments ago.

My granddaughter, all of two and a half years old at the time, laid her tiny little hand on my leg and asserted: “You’re my best friend.” Pleased with herself, she proceeded to ignore me in order to watch the rest of the room, but her hand stayed where it was …

Quite simply, she took my breath away.

We all have those moments when something unlooked for happens that is so wondrous, so fulfilling, that everything around us fades if only for a few seconds. We are caught up in the joy, the wonder, the enormity of that experience.

It’s almost impossible to imagine that there could be moments so exquisitely magical in a world where there are also moments of such darkness, such pain, such utter despair.

That’s just the life of a person living with chronic pain.

I happened to have one of those unpleasant times myself not so long ago.

Let me back up a moment and describe the experience in the context of a pain scale.

You may have been asked what your pain is on a scale from 1 to 10 where 1 is barely noticeable and 10 is the worst pain you have ever experienced.

You have to ask yourself: What does it mean giving a number to your level of pain? I know the result of a lower number means we don’t adjust my medications and conversely a higher number means we consider other options. But, that isn’t really my question. I’m not asking what the outcome of the number is, but rather, how do you arrive at it?

For myself, if I’m bouncing through my week feeling rested, looking forward to my next visit with my family, I’m likely to say a 3 no matter if my fingers are unable to grasp my cup of coffee.  On the other hand, if I’m sleep-deprived, dealing with the loss of a friend, or putting up with yet another cold, I’m more likely to say a 6, even if I can grasp my cup of coffee.

I’ll give you a little more insight into my pain rating system.

When I found myself being asked for my pain level at the hospital recently I gave a firm 8. My poor husband almost fell over in shock. In hindsight  I should have prepared him for it. It’s not like he didn’t know I was in excruciating pain. It’s just … well … I don’t like to share the fact that I feel that kind of pain. I know … a little odd maybe, but I prefer to suffer in private … if not in silence.

The other thing is I don’t often give a high number. Really, it’s not that I’m attempting to be stoic or brave. You see, I believe that when you’re at an 8 you can still speak. After that, it’s a fast decline to a 10 which is when you can’t speak, so when I say the pain is at an 8, I’m telling you a lot: I’m on the edge of pain so bad it takes your breath away.

You don’t think.

You don’t hear.

You don’t speak.

Because you can’t.

There is, quite simply, no other way to describe it. Everything else around you fades and all you are left with is experiencing that moment. That painful moment.

So maybe there are times it is expedient to give a number to our pain. I realize we have to do something in order for the nurse who triages in emergency to know where to put us. Maybe we should also explain our internal rating system. I’d be willing to bet there are wide variations.  One thing I’m certain of: Anyone living with chronic pain dreads those moments when the pain is severe enough to take your breath away.

At that moment it doesn’t matter what number you want to give it.

So that brings me back to where I started all this. Whether you’re living with chronic pain or not, I’m certain many of us have experienced pain so intense we lose our breath. What keeps me going through the time leading up to those moments (because I live with the certainty there will be more of them) is the knowledge that I have moments in my life where my breath is taken away by something precious and equally unlooked for.

It’s not like I’m trying to only be positive or look at the bright side of things. I’m not even trying to make lemonade out of my life. I just figure if my pain, my health, my life is being relegated to a number on a pain scale, I might as well make something meaningful out of such a number.

I look at my life as keeping score … of all the intense moments of my life … it keeps me sane.

Okay … it helps …