This is gonna be quick, I just want to share this as a reminder and food for thought for everyone. I have been meaning to say this for a while now, but I have been pretty busy. Its is something occasionally we all seem to forget…
There are great Narcolepsy organizations and various groups out there, who do all they can for us. From helping us find a doctor through peer recommendations, to advocating for Narcolepsy on a higher level. The people who run these things are working their butts off to keep us all organized and updated on the latest and the greatest. They do this along side of their lives at home; family, school, jobs, what have you and for any Narcoleptic we know that is already a lot to deal with. What a lot of people, mostly newer people, don’t realize is that all the people who we look to for guidance in these positions are narcoleptic also. exhausted people who despite their illness are doing what they can by volunteering to help out others and be leaders in our community. We need to really start mentally absorbing that.
Emails, may not be timely. Mine never are, are yours? Phone calls, might last 2 hours, or be forgotten altogether. It happens. There is just not enough time in any of our days to be narcoleptic and human too. The people we look to, are no different from us. They need our love and support as much as we need it from them, and from each other.
A lot of people who have been pulling the lines for all of us have been dealing with various complications in their personal lives this past year. It has been an eye opener for me personally to see so many people dealing with so many serious issues in their home lives, and yet, still come to bat for our cause over and over and over again. It is time we acknowledge that and show them all a little more love, respect and courtesy.
And a lot more patience.