Chronically Complicated Marching

Time marches on and we kind of march with it. Some people march with amazing flare and style. There are people who can march and juggle at the same time. Others seem to glide along, feet barely touching the ground. If you happen to be like me you tend to march out of step, stopping when you should be going and sometimes getting off the path, but you still march.

Regardless of your marching style, or the length of your march, it all ends the same…in death. When you are young you don’t consider that at the end of this grand adventure known as life comes a stopping point. You march and dance like crazy wanting time to go by faster and faster. And then you hit milestones that show you time is passing as you find your own way to march. At some point though you understand that there is an end to this marching, that there will be a resting point and you begin to contemplate what that rest will be like.

If you have a chronic illness like I do, you may be more aware of the rest point that peers your age are. It comes with the package I guess. Or maybe it’s just the reality of too many hospital visits with overworked and somewhat detached medical professionals. So you start to think about what you want to happen if your march comes to a slowdown while you are in the hospital. There are so many choices from doing everything heroic to just letting things be as they are. There is this thing called a medical directive, or living will to be filled out.

And it hits you, the absurdity of this all. You are in the hospital, getting pumped full of medications and treatments which are designed to help maintain your health, extend your life even. And someone pops into your room with a clipboard and a cheerful voice and tells you that although it’s an uncomfortable topic, they want to know if you have a medical directive. If you don’t, this nice person will proceed to go through the information that basically comes down to, in the event your heart stops beating or you stop breathing do you want: A) to be resuscitated or B) natural termination.

So you are in your hospital bed, maybe being pumped full of poison to keep you alive and you are now asked if you want them to take an measures to save you if something else should go wrong. And you state your answer and if you are like me, you realize you are a bit of a hypocrite. Because killing off your own immune system with toxic poisons is not natural. Nor is it dignified, not really. And yet you choose for your own death to be natural and dignified.

When the march comes to itself final resting point for you, you want to take the rest, on your terms in your own way. And that’s the thing that I struggle with the most as I battle with lupus. Sure right now I’m taking the medications and treatments on my terms, deciding what I will and will not do based on my own risk assessments. But at the end, I want to die on my terms, if that means with medical assistance so be it. But until then, I am, in my own way, asking the medical community to extend my life with this illness. And it’s all absurd, but it’s life. Life with lupus the chronic complication.


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