Where do you see yourself in five years? The evolution of a patient’s goals (NHBPM 25)

What do I stand to lose?

When I first heard that I might have this thing called MS, my first goal as a new patient was to Get Informed. My doctors were the first to admit they didn’t have most of the answers, because each person’s experience with MS is different. There were no crystal balls or prognostic tests to run.

It was frustrating at first, but that open-endedness emboldened me to become the expert on my self and my condition. The preoccupation with learning helped take some of the sting out of an unknown and uncertain reality.I researched everything I could find on the topic. I wanted a map to this uncharted territory I found myself dropped in.

What else could I possibly lose?

After a year or two of getting oriented, I aged out of the honeymoon period of being “newly diagnosed” and became just “a person living with MS.” My goal changed to Endurance. I knew everything I needed to know about MS — it sucked.

This was a darker period. I hunkered down and prepared to take the blows as they landed, but surviving and thriving are worlds apart. I started to settle for a life of subsistence, unhappily.

What have I got to lose?

Once the vision thing happened last year, though, my goal as a person living with sometimes-disabling MS became Push the Limits. This disease may take things from me, but I needn’t abet it by surrendering a single. thing. more.

What if I trip while training for a 5K? So what? Run all the miles.

What if I dyed my hair purple and looked ridiculous? What if it looked awesome? Do red next. Then pink!

What if I can’t do something next year, or in ten years, that I do now everyday? I’ll find new ways, because I’ve done it before.

The important thing for me to remember is that everything does evolve. A mantra that I adopted during the endurance stage is “Everything is always changing.” It sounded more neutral/honest than saying things would improve, which felt like a lie much of the time. Still does.

But remembering that everything is changing helped me get through painful procedures and long days and nights, in part by priming my brain to carefully observe, mindfully, and watch for the slightest changes. Whatever was causing me grief, well, even that was changing: sometimes fast, sometimes slow, but nothing, NOTHING, is permanent.

Because even if a diagnosis or an ache was my new companion for life — even if that part of the equation might never change — there would be ripples of change in something related to it, something neighboring it. My reaction to it, my coping with it, my expectations — something would change and get more tolerable or actually better, or at the very least, a new threat would become an old threat.

Because if nothing else, time changes. And luckily, I do, too.

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