Waiting for the Other Foot to Drop.

Disclaimer: I usually write about my life and share things that I think are funny or entertaining, but that hopefully don’t get too personal or over-sharey. But to prove I’m not a one-trick pony, today I’ve written about something intensely personal that totally over-shares and isn’t funny at all! Enjoy!

My doctor tells me that he believes I may have Multiple Sclerosis. He isn’t 100% sure. He said it could also be this other condition that is apparently so complex that even Google can’t paint me a clear picture of it. But he says he doesn’t really think it’s that – and thank goodness because it would be so much more convenient to have a disease everyone has already heard of. Less explaining; more sympathy. And let’s be honest: Sympathy is the only good thing about having a disease in the first place.

Over the past few years, I have had every test imaginable. Some have been positive. Some have been negative. Recently, more evidence in the “for” camp has emerged. But MS is a slippery bastard and I’m told it isn’t always easy to diagnose, ‘a diagnosis of exclusion’ they call it. So at this point it appears that my white matter disease falls into a grey area. In other words, they know something is wrong in my brain, they just can’t tell me exactly what it is.

My doctor told me there is nothing to do but wait and see. Since I am nothing if not obedient, for a while I did this.  And as I waited, I considered whether or not to fall apart over this situation. I even tried it for a short time – doing an internet residency in Neurology and learning just enough to scare the shit out of myself. This was not a good idea. But eventually I decided that the possibility of having MS – or the actuality for that matter – is not something worth going to pieces over. For one thing, who has the time? For another, I just don’t want to give my life over to that kind of fear. When I think like this, I feel righteous and strong and capable and in control. I like that feeling. And I feel that way most of the time. Most of the time.

But there are times, in the quiet moments when I’m not thinking about the things I have to do, or what to make for dinner, or how I can crash my minivan for the insurance money without hurting anyone– that the fear sneaks in. It pounds at my chest wall and swirls in my gut. It keeps me awake at night with images of “What if?” Fear will do that to try to get my attention. Just like a tantrum-throwing child, fear gains strength from my tolerance and responsiveness. I used to think that worrying about something could prevent it from happening. Like my worry was proof that I was not so egotistical as to believe that it could not happen to me. I thought that if I worried about it enough, the worry would form a shield over me forcing the Big Bad to skip me and move on to some arrogant sumbitch who thought they were invincible. (Ironically, it was pretty arrogant of me to think that.)

But now I know better. The truth is that things happen whether you worry about them or not. Fear – or the absence of it – cannot stave off disability or prevent disease from striking or keep your loved ones safe. If only it could. Unfortunately fear can do many things, but it can’t change your fate, except maybe to ruin the present while you are waiting for the thing you’re afraid of to come and get you.

This brings me back to my doctor’s “wait and see” advice. The more I thought about it, the more I thought that waiting for something like MS to show itself – or not – seemed like just another way to be afraid of it. So I decided against waiting. I’ve opted instead for denial –stuffing a sock in the mouth of my Jewish ancestry and giving my Northern Irish roots permission to take over (which is fine considering the Jewish part of me still has to whisper M.S. when she talks about it). Denial, while not normally my go-to response, is the strongest response to this situation. It is a brick wall, an impenetrable fortress.  Denial will kick fear’s ass and stuff it down deep inside where it can’t take anything away from me. Because once again, like a whiny child, fear will not perform without an audience.

So even with my doctor’s advice to wait and see, I’ve made up my mind that I am not going to sit around and wait for MS. I know that it will get my attention if it needs me. And until that day comes, if it ever does- I will wait for my kids to stop fighting with each other, for someone to invent zero calorie potato chips that tastes the same as regular, for my husband to take an intense interest in housework – but I will not wait for MS.

Goodness knows it won’t wait for me.

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29 Comments on “Waiting for the Other Foot to Drop.”

  1. rockitalian says:

    Beautifully written!! Your strength and courage are unstoppable. MS has no chance!

  2. Martin says:

    Jill,

    I’m truly sorry to hear this but at same time uplifted by your +ve outlook.

    Martin

  3. Lynne says:

    Do you eat stuff with artificial sweetener aspartame? I read that this can cause some people to have symptoms so similar to MS and it is their bodies cannot tolerate it – it’s poisoning them. I also read where some doctors are calling their patients who they were treating for MS to check their diet. Maybe this is worth looking into.

  4. gale spencer says:

    Okay. Okay. This is a bit unsettling. I am going to a) pray b) Google c) be positive d) plan to interrogate you for details the next time I see you. Much love and hugs! You got this!

    Gale

    PS Any chance you can shamelessly exploit this for personal gain? That is always a nice perk of a serious diagnosis. Scott plays the cancer card repeatedly…

    • Jill Orr says:

      I would LOVE to exploit this for personal gain!!! Sympathy and personal gain… the only good things about having a disease. Now I just have to figure out how to do it. Wish we could sit on a beach, twist our metaphorical mustaches (because we are both way to well-coiffed to have real ones), and hatch an evil scheme! Next Jan for sure 🙂

  5. Jen says:

    Beautifully written by a beautiful person! Everyone should read this.
    Much Love Always!! Jen :).
    P.S. How did you still manage to make me smile while writing about MS? 🙂

  6. Shauna says:

    You my friend are amazing!

  7. Chrissy says:

    Jill….you are so amazing and strong! You inspire me!!!! I am lucky to be your friend and I am all in for denial.

  8. Julie Swain says:

    Oh, Jill! I will think of you and pray for you. By the way, denial is my personal favorite form of defense for the truly “heavy” things in life (ha, but seriously). If you ever need a friend to help bolster your denial senses let me know. Thank you for having the courage to share.

    • Jill Orr says:

      Thanks, Julie. I actually regret not having employed denial earlier in life. Could have really come in handy during those awkward preteen years 🙂

      Hope to see you soon!

    • Pat robin says:

      As a psychologist, I couldn’t have said it “healthier” I even had some clients with health issues read it–to show them the way. You’re amazing and I’m so proud of you! Keep on dancing sweetie. Love aunt pat

  9. Karen says:

    Beautifully written, Jill. Your words are wonderfully wise, thank you for sharing.

  10. Shoshana says:

    As you taught me, denial is not just a river in Egypt. Way to go serious my friend!

  11. Tia says:

    Jill, you are a bon vivant, an incredible friend, an amazing mother and wife, and a wildly talented author. Your narcissism “exercises” are not narcissism, but art we can read, relate to and love. I know you and can say these things for sure, but anyone in the world can read your posts here and know the same. Love you!

  12. Chrissy says:

    Jill – You are truly an amazing, strong woman that inspires me! I am proud to be your friend.

  13. Scott Orr says:

    Jill, we love you and support you and admire you so very much. Our hearts and warmest wishes are with you always. We know all will work out for the best and your grit and charm will continue to overcome any bumps in your path. Love and appreciation and gratitude for a very special daughter in law! Luv papa and grammy 🙂

  14. Leah Beth Siimon says:

    Well, I was going to come up with some clever reply, but even your “repliers” are more clever than I could ever hope to be! So I will simply say how blessed I feel to have had the oportunity to get to know such a beautiful, talented and fun lady!! Only wish I could see you more! BTW I am really good at “pity parties” if you are ever interested…pulling covers over my head for days, yelling at God and eating everything in sight! (The last is not reserved for pity parties only!!)

    LB

  15. karlapr says:

    Feel free to write about this or other un-funny things whenever you want. (and you were still funny. : )

  16. Nancy Yang says:

    Dear Jill,

    As always, I admire your biting wit! Last week Kell and I attended an Easter service where a rabbi delivered the sermon. He asked: “How would you live if you weren’t afraid?” You have answered this question with courage and grace.

  17. Stacia says:

    Wonderfully said and written. You are an inspiration my friend. Whenever you need to kvetch and drink champagne….let me know.

  18. Sarah says:

    You are a true inspiration! Thank you for sharing so I can keep you in my prayers! I hope to catch up soon. xo

  19. Jill,
    I just “liked” your post, crazy thought. So sorry to hear this. ~

  20. Pam says:

    Hi.. I came across your blog via LTYM and have been going back through all your older posts because your blog is awesome. But I got to this post first and I just have to say something except I’m not sure what… Best of luck to you. I love your attitude.

  21. Lorena says:

    Hi Jill, I hope you’ve received better news since you wrote this. I have to say that I admire your attitude. It really is an example to follow.

    “I thought that if I worried about it enough, the worry would form a shield over me forcing the Big Bad to skip me and move on to some arrogant sumbitch who thought they were invincible.”

    How true is this! If only we could convince ourself that worrying is useless.

    All my best to you, Jill.

    Lorena

  22. Keri Jones says:

    Wowza, Jill! This is amazing stuff and just like the other commenters, I am so impressed by your spirit and strength. My favorite line of them all — “Unfortunately fear can do many things, but it can’t change your fate, except maybe to ruin the present while you are waiting for the thing you’re afraid of to come and get you.’ This seems so true whether the fear is of MS or of failure or of loss or whatever–you’re giving a good lesson for us all! Thanks for sharing something so personal and powerful.


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