That’s it. Choice. The ability to choose what you’re going to do today. What you’re going to work on, what you’re going to wear, where you’re going to go, who you’re going to spend time with, even what you’re going to eat.
The most basic, and simplest of choices.
When you’re healthy you have all those choices. When you’re ill, you don’t. Not even the one about what you’re going to eat. Because maybe you have multiple food allergies, so you have to check every label, and you have to cook everything from scratch, and your jaw is flaring so it needs to be soft food as well…and that’s all just too hard. Skip the food. No choice.
Sure, you have to work. Well, most healthy people do. What a drag, right? It would be much more fun to stay at home every day like a sick person. But even if you take those eight hours of a work day away, those same eight hours of work that give you a lifestyle that you can enjoy, the lifestyle that gives you financial choice (another choice the ill and disabled don’t have), even if you take those eight hours away, you still have another waking eight hours in every day to choose what to do with. And then another eight hours to sleep.
Ahhhh sleep. Also, not a choice when you’re sick. Sleep is a privilege. A blessed relief. Far from a given. The only choice when it comes to sleep is whether you’ll risk another sedative, or pain killer or both. How much do you want that sleep? How much will you risk for it? When you’re sick, you don’t just decide you’re tired now, and you’ll go to sleep. You’re tired all the time, but that doesn’t guarantee sleep.
People who are chronically ill don’t have any choice. Every day is dictated by pain levels, fatigue levels, nausea levels, dizziness, brain fog. My body tells me it needs to lie down every day. But I don’t want to do that. That’s not a life I want to live, lying on a couch all day. Yet I spend the biggest part of most days doing exactly that. I don’t have a choice. But I do as much as I can, even if it’s just one hour, and I have to be determined and strong and accept the extra pain being active causes…or have no life. Because lying on the couch all day is just an existence. A very lonely one.
The only choice I get is whether to take an hour and physically push my body to achieve something…an exercise class, planting some shrubs, vacuuming or doing laundry…something, anything…or to do nothing and have a little less physical pain, but no life. I choose that hour when I can, because I’ve always been a physical person. And I know that after that hour I’ll need to rest for several hours. And that’s it. That hour. That’s my whole life right now.
Today I have no choice at all, because yesterday I messed up my lower back. Today I have to lie down, flat on my back, and I have to try not be angry about it. But I am angry about it, because nothing I do stops the pain. Everything I do causes more pain. My back is just the worst of it. I’ve messed up my neck as well. Attacking hard ground with a pick-axe will do that I guess. So now, consequences. Because I tried to do a hard thing. I tried to push myself physically for a few days in a row.
Lying down doesn’t make it better. It’s just that walking around makes it worse. And I’m not able to drive a car, because I don’t have the reaction times in my legs. The nerves in my spine are messed up, and sometimes my legs go numb, and sometimes I can’t move them the way I want to. Certainly not fast enough if I needed to brake suddenly.
I do know when I am safe to drive and when I am not. Today I am not. And I can’t walk either. And I don’t have a powerchair that can do outdoor terrain.
So I don’t get to go anywhere. I don’t get to do anything. I don’t get those choices.
I am stuck here, lying flat on my back, with a message from a friend saying ‘You can still choose to be happy’.
Yeah. True. But now’s not the time for a pep talk. And ofcourse that statement is true to a point, but it is also incredibly insensitive and facile.
Because it implies that I am just not trying hard enough to be happy. It ignores the pain that my own actions have caused me, as an inevitable consequence of trying to be happy. It removes any credit for my determination or strength, or any empathy for the price I pay, the pain I’m feeling.
It’s cold, barren advice, when what I need is support. It’s a cliché. It’s generic. It’s simplistic.
And it completely misses the point.
Still, there is one thing I can do. I can take another oxycodone, double dose, and it will turn down the volume of the pain, that quite frankly I can’t deal with today. I still won’t be able to function because I’ll be too doped, but I will be able to do more than just lie here and cry. But I still won’t feel healthy. And I still won’t have a choice.