We just slipped under the 10-day countdown to our big European vacation: two weeks in London, Paris, and Munich.

There’s a lot going on right now – vacation is NEEDED on so many levels. I have (/had) three events scheduled this week at work (as my success in my new job snowballs, this seems to be the norm these days). Our house is a construction zone, still, and we are desperate to escape it. El Niño is beginning to dampen our souls. We miss our friends overseas

2016 started off at 11 and we’re afraid if we don’t dial it down fast, we’re going to experience a serious blow out before it’s all over.

But most of all, I was looking forward to this trip because it was supposed to be in honor of my ten year remission anniversary from Multiple Sclerosis. “Supposed to be,” because unfortunately, I don’t think I can view it that way any more.

For the past couple weeks I’ve been struggling with feeling highly symptomatic and not wanting to admit to myself that my remission might actually be over. Uncannily, almost exactly ten years to the day it began.

I’ve been struggling because I’ve felt exactly this way before. Memories are flooding back, and they are not good memories.

I should probably go see my neuro, but I know if (and when) I do, he’s going to order a bunch of tests that will show me things I don’t really want to see because I already do everything I possibly can to fight this disease. In fact, the most effective thing I HAVE done has been to learn not to be consumed by fear of it. To extricate myself from the culture of the patient.

Even worse, my doc might just throw me in the hospital slammer and start me on steroid infusions. And I made a firm declaration – to myself, my husband, my family – some time ago now that if I ever wound up back in this situation I would refuse that treatment. I don’t believe I need it and, having suffered through it multiple times now (and I deliberately use the word SUFFER), the side effects are not something I will put myself through again.

So, I keep asking myself – what good will come of knowing my brain is currently splattered with a dozen or so active little lesions on gadolinium enhancement, when my choices are…

  1. A treatment I don’t want?
  2. Rest, return to my center and balance myself as quickly as I can (the thing that has worked for me for the past decade)?

The answer is really pretty clear. The struggle comes from the fact that I set these “rules” for myself a decade ago around my diet and lifestyle – my willpower is the key to celebrating my “remission” and treating myself – and I’ve been so goddamn good at playing the whole game and keeping it going.

Until now.

And now I’m just disappointed, plain and simple, because I’ve finally been defeated at my own game, by my own body. All of a sudden I feel the worst I’ve felt in a decade, right on the eve of my biggest celebration, and I don’t want anyone to tell me out loud that it’s over.

That hurts. More than my legs or my feet do right now.

So I keep walking around on those trembling legs, not calling the doctor, thinking of a way I can frame all this up for the “next era” (because of course I see my disease course all calendared out and color coded; come on!). Thinking that maybe 2016 is about me learning to relax the rules a bit. To understand that I’m always making progress as a human being on many levels; that there are ways to balance myself without punishing myself… That I am not cured and never will be and that’s okay, but that I am in acceptance – even harmony – with my body’s shortcomings…

I haven’t figured it out. Yet.

I do need to call the doctor, and I will. But I do also need to go on vacation, and I will do that, too.

And one way or another, I think when I come back, I’m gonna feel better.

By spring of 2006, I was recovered from my February hospital stay and strong enough to leave my life behind for a new one in California. Can't help but wonder if I'm supposed to revisit these memories and that spirit now for a reason... ?

By spring of 2006, I was recovered from my February hospital stay and strong enough to leave my life behind for a new one in California. Can’t help but wonder if I’m supposed to revisit these memories and that spirit now for a reason… ?

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3 thoughts on “Reframing

  1. Margaret Wisniewski says:

    REFRAMING: Celebrate 10 years of remission!!! And the beginning of another 10 years of remission. Just because your disease trajectory has been punctuated by one unfortunate incident does not mean that you are a failure or that you are bound to repeat it any time soon.

    Move forward fearlessly, as you have done in the past, and don’t look back.

    Relax the rules a little and go with the flow. There will be obstacles, but they are not roadblocks. Schedules get interrupted. Life happens when you are making other plans.

    Be in harmony with your body’s shortcomings. Call the doctor if you want to. You are healthier than any person I know.

    Go on that vacation. You will come back healed.

    Re-visit the memories and the spirit of 10 years ago when you made that quest all alone, across the country, and started a marvelous 10 year journey that has been filled with unimaginable joy and fulfillment. And look forward to the next 10 years and all the possibilities that will come within them.

    Your husband loves you. Your family loves you. Your friends love you. Your co-workers value you. You still have things you need to do. The world needs you. There is a plan for you, and it is a good one.

    Life is good.

    Love never fails.

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