Tuesday, September 13

I'm NOT Ignoring You

Really, I'm not.

I love the comments you've made, the emails you've sent, the effort you've made to reach out to me.

As many of you know, having a chronically ill spouse is already difficult. Having a spouse whose chronic illness is narcolepsy however - well, that's a different story.

Most people just don't get it.

Most of the people I've met have either never heard of the disease or they may have seen it briefly portrayed in some random (and usually totally inaccurate) movie. When I explain how narcolepsy affects my husband, many people are sympathetic... but they still don't get it. How could they? I don't expect everyone to understand. Our own narcolepsy-educated families struggle to support us and what we're going through. So hearing from people who DO get it is like being surrounded by empathetic friends.

Thank you so very much for your support.

Have you sent me an email and felt miffed that I never replied? Have you left a comment and waited patiently for me to acknowledge you? Well, I'll be honest: it's really hard for me to talk about my husband and his health. Funny, right? This is a blog, after all. But spilling whatever's in my head and interacting one-on-one are totally different to me. My blog is cathartic, and it takes a lot of emotional energy. It forces me to confront certain feelings and helps me to think of the positives. Replying to individuals is harder for me, a lot harder.

I'm working on it. So if you get a totally out-of-the-blue email from me one day, just know that it probably took me a month to write it, and another month to finally send it.

I've saved every kind email I've ever received, though. I love re-reading them - it's very encouraging. Here are some of my favorite thoughts:

" Thank you for putting yourself out there, your entries were helpful to read."

"Your blog is very touching and honest and I have a tremendous respect for you writing down your experiences and sharing them... As a narcoleptic, a lot of the issues you write about are all too familiar to me."

"For the longest time no one believed me about having these disorders..."

"Thank you, thank you..."

I'm not superhuman or especially strong. I'm just a woman who's determined to fight narcolepsy's tendency to destroy relationships. But your support makes me feel pretty invincible.


  1. Where's the "like" button? And no, this comment does not need acknowledged :)