Visual Cues

Like most little kids, my daughter loves to play in my closet. When left to her own devices, Sophie can be found putting her tiny feet into my high heels, dragging my scarves through her bedroom and dressing her dolls in my t-shirts. Last week she emerged with my cane, which was buried deep at the back of my walk-in closet, and I instantly cringed. Although it was 5 years ago, the mere sight of the walking aid brought me back to my most vulnerable time.

I’m one of the lucky ones and that’s a weird thing to say because neuromyeltis optica (NMO) doesn’t go away. There was a time I was told I’d probably never walk again, and then that I’d probably never walk properly again, and then that I got lucky…this time. It’s the “this time” part that made me stash the cane at the back of my closet. I’m a realist now and I’ve made my peace with the inevitable that one day I’ll need the cane once more, but I’ve been quite content, thank you very much, to move on with my life in ignorant bliss. Out of sight, out of mind until my pre-schooler decided it would make an excellent toy for the afternoon.

I know a lot of NMO patients can relate to how their wardrobe makes them feel. When on prednisone (steroids) most of us gain weight, and some of us even get the ‘moon face’. On one particular outing a stranger asked me when I was due and I lied and said, “soon” to avoid the uncomfortable truth. I remember coming home, grabbing several garbage bags and donating all of my thin clothes. Hundreds, if not thousands, of dollars worth of clothing, were given away that day. And although I’ve now endured several rounds of prednisone I’m more at peace with my wardrobe that “this too will pass” and subsequently divide my closet into “skinny Jenna” clothes and “Jenna-zilla” clothes.

It’s funny how a phrase, a song, the sight of an object can instantly bring us back to a moment in our lives.

01
Jul 2015
POSTED BY Jenna
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4 Comments

  1. I’m in my “zilla” stage. Thanks for your thoughts. I look forward to your posts. It’s a great encouragement to keeping my NMO Normal. Thank you so much.

    Comment by Roxanne on July 8, 2015 at 1:28 am

  2. Jenna

    Hi Roxanne,

    Thanks for following our posts. Sorry to hear you’re in zilla stage but know that it can approve. I found doing some exercise, even a light walk, helped manage how I felt during the zilla phase.

    Good luck!
    Jenna

    Comment by Jenna on July 8, 2015 at 1:10 pm

  3. Crystal

    I can totally relate to ever part of your musing. I cringe at the site of my eye patches and the photographic reminders of my worst days. I too am guilty of moving forward in ignorant bliss and the thought that I’m one of the lucky ones. It feels good to know I’m not alone.

    Comment by Crystal on July 8, 2015 at 1:41 am

  4. Jenna

    Hi Crystal,

    I hadn’t even thought about the photos! I actually got married when I was carrying a lot of the extra steroid weight so that was and still is disappointing. Thanks for following us and glad to hear you’re in good condition right now.

    Jenna

    Comment by Jenna on July 8, 2015 at 1:13 pm

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