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.
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.
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”.
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.
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.
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.
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.