Chronic Disease: Planning for Uncertainty

Every year around this time my husband and I try to  get away for a long weekend.

Don’t get me wrong, we certainly go for the downtime, the quiet. It’s also the time of year we reflect on where we are and where we want to be. Having acquired more than a century between us, we figure we may as well put some of that hard-earned wisdom to good use.

Sure, we look over our finances, our budget, our housing needs, our professional lives, but we also consider our family life, social life, personal interests, and health and well-being. The way we look at it, if we don’t talk about it … if we don’t work at it … we can’t whine about not getting it.

In discussing what each person wants we discover things about each other, and even ourselves, that we may not have realized. We find where we meet on values, which is fundamental to a strong union. We can make realistic plans for what we can achieve as well as grieve and put away those things that are not going to happen.

Sometimes people ask me how I can make such plans in the presence of having a chronic disease; particularly when I am waiting on a surgery or a nail-biting test result.

My response is the same each time: How can I not?

I can’t focus on what I cannot, do not know.

I can’t focus on what I do not, cannot have.

I can’t focus on what I am not, nor ever will be.

It’s true: I don’t know what will happen with each surgery, each test result, or each new complication. It’s true: I don’t have the physical, mental, or emotional energy that I used to have and never will again. It’s true: I am not ever going to get “better” because I have a chronic disease and that’s not going to change.

But for me, it’s not about what I can’t do … it’s all about what I can.

I’m not in denial: I am quite cognizant of all that I can’t do. It’s just there is still so much that I can, so it feels wrong not to focus on that as well.

I’m not trying to put a postitive spin on things: I am realistic about what I can and can’t do. And, I am well aware that what I can do today isn’t going to be true for me tomorrow or next year.

I’m not ignoring what is: I am looking at the entire life that is mine, not just what seems to get in the way. When we focus on a single aspect of our lives – good or bad – we lose out in what the other parts can tell us. No, I’m not saying I’m happy to have a chronic disease; but I have made peace with it and that makes all the difference.

It’s a tenuous balance.

On the one hand you’ve got all the wonder life can offer and on the other you’ve got all the horror. But the way I look at it that means I’ve got two hands … two options … two pools from which to draw from …

So, I am taking all the plans, ideas, and possibilities from my planning weekend and I’m putting them into motion. Do I think they will all come to fruition? Please, my parents didn’t raise a foolish child.

Here’s the thing: There is no certainty that anyone – regardless of health status – will get all the things they want, that they work for, or that they plan for, so why shouldn’t I keep going?

I know, I know … I’ve got a few extra strikes against me.

I’ve got a few less tools in my kit bag.

I’ve maybe even got a little less runway than those with healthy privilege.

There will be days, maybe weeks, where little gets done. There will be setbacks, challenges, and unknowns to deal with. There will be ups, downs, and those irritating side-ways steps. Tell me something I don’t know.

Here’s something else I know: I’m willing to work hard. I’m even willing to work smart. I still look into the next year with an exciting plan that takes into account all the things I want, need, and, yes, deserve.

Why shouldn’t I?



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