Guess What J. Crew? It’s Neuropathy Awareness Week!

Posted on May 13, 2014

Dear J. Crew,

Guess what this week is!! Nope, it’s not my birthday. It’s not Halloween either. If you happened to see the headline of this post, you would know it’s officially Neuropathy Awareness Week.

Neuropathy Awareness Week My feelings about Neuropathy Awareness Week lie somewhere between winning the Superbowl

SuperBowl Win… and losing it.

Losing the SuperBowl I wrote SuperNeuro (my beloved Neurologist) asking about her Neuropathy Awareness Week plans. She admitted that while she has no current plans to celebrate, the week does feel “rather Mardi-Gras-esque for Neurologists”. I am hoping this means the Neuropathy Association will consider doling out Mardi Gras beads to celebrating Neurologists next year.

Mardi Gras Neuropathy Awareness WeekSo what’s a neuropathy?

A neuropathy is what happens when something damages your nerves creating weakness or paralysis. Based on my limited knowledge as a non-doctor-blog-writing-patient, a neuropathy is just a symptom of a larger issue. Different diseases have different symptoms.

For instance, one potential symptom of Diabetes is thirst. For a Diabetes patient, thirst might be the defining experience of their illness, yet it remains just a symptom, not the condition itself. A neuropathy happens to be another potential symptom of Diabetes. The difference? There’s no Thirst Awareness Week. Diabetes on the other hand has an entire month (November) dedicated to its 25 million sufferers.

So why does my symptom, neuropathy, have it’s own week? And why do I consider it to be my week if it is just a symptom? Because like so many others, we don’t know what my disease is. My official diagnosis is “Idiopathic Neuropathy”.

Idiopathic Neuropathy Awareness Week I know, frustrating… right? I have neuropathic symptoms but no ‘known’ cause, no known diagnosis. It feels noncommittal. This diagnosis also means I don’t get a community I have so desperately longed for. But I know what I like, I know what I value, and I have decided that my sense of belonging, of feeling included will be by nudging (ok, fine… bulldozing) my way into the lives and the things that I like and value.

There’s just one hitch. I’m tired. I have flare ups. This flare up hit over the last couple of days. Flare ups used to make me feel hopeless. But I’ve been adjusting. I now understand what’s happening to my body. I understand that the tide will recede just as it came rushing in. And through these letters, I am starting to understand that my place in the world does not depend on my ever changing physical state.

Me and Hanky Sleeping So because I’m flaring up. Because it’s Neuropathy Awareness Week. Because my body can’t always keep up with my heart. I’m going to give both me and you the week off. But I hope you know that I’ll be back next week with more gusto, more passion.

Tiredness doesn’t preclude me from the thrill that each signature YesJCrewCane brings. So please don’t hesitate to sign.  There are only 5 questions. One is optional.

YesJCrewCane Petition You can also do something that doesn’t require a signature.You can educate yourself. I had never heard the word neurpathy. And then I got one.

Thank you for reading.

Liz

P.S. The Neuropathy Awareness ribbon is Purple. Just like my cane. If you have seen my photo, it won’t shock you that ribbons don’t really fit my style. But inclusion does, and you can include me and my 19,999,999 cohorts in your thoughts by wearing a splash of purple (or Neon Violet) this week.

Neon Violet Shirt P.P.S. Isn’t Michael Sam so dreamy? #Inclusion

What Others Are Saying

  1. Janice Fahey May 13, 2014 at 6:38 pm

    Dear Purple Cane Girl AKA Elizabeth,
    I enjoy your posts. I even bought myself a SABI cane. I am curious why your campaign is directed at J Crew. Any comment?

    • The Girl with the Purple Cane May 14, 2014 at 12:25 am

      That’s really nice to hear! What color did you get?!?

      Regarding ‘Why J. Crew’, I wrote two specific reasons Why J. Crew on the petition. The first reason speaks to my personal feelings about J. Crew:

      “In the town I was raised, there were no J. Crew stores. But there were J. Crew catalogs. And they spoke to me. They told me stories of who I was going to be when I grew up. J. Crew states one of their top priorities is to run their business with sensitivity to the world around them. So now I wonder what seeing my purple cane in a J. Crew catalog would have said to my teenage self. Would it have saved me future anguish?”

      The second reason speaks to J. Crew as a business model:

      J. Crew is the only company I know that is cool enough to pull this off. Aware enough to make it fit. And large enough to have an impact.”

      Do you have any thoughts or feelings about J. Crew being chosen as the target of this petition? I’m very curious what you may think.

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