Reflections on Narcolepsy: Guest Post by Tim Josiah Kavanagh
REM Runner’s Note: Tim created this unique photo for the NARCOLEPSY: NOT ALONE campaign. Read his amazing description below. Thank you, Tim!
Tim’s Guest Post:
Having narcolepsy can be confusing. Reality as experienced by a narcoleptic may often be distorted. Dream fragments live large in the mind and memories are unreliable. It can sometimes be challenging to hold yourself in the moment and keep a sense of identity. This photograph was an attempt to ‘reflect’ some of this unseen complexity of simply being awake when you have narcolepsy. Whilst the more obvious sleep problems and cataplexy are often described and at least partially understood by the general public, some of the more invisible symptoms can have just as significant effects on daily life.
About the Artist: Tim is a narcoleptic and amateur photographer, living in the wilds of West Wales. He is also a volunteer trustee and director of the charity Narcolepsy UK (www.narcolepsy.org.uk).
What does it mean to you to participate in NARCOLEPSY: NOT ALONE? Share your campaign experience in a guest blog post – email narcolepsynotalone@gmail.com!
I have had N with C and HH, SP and EDS as long as I can remember, and this picture is so true it made me cry. I wouldn’t wish this disorder on my worst enemy. Thank you, though, as the campaign says, it’s good to know I’m not alone.
Hi Tabitha, I’m so sorry to hear you have N + C as well. I agree, this picture really captures the experience. Thank you for checking out my blog! Sending wakefulness and smiles your way, Julie
I am always trying to find information on how people with narcolepsy really feel. My son has it and he can’t even explain it so as someone without it I really appreciate the insight of Tim’s post. Though I will never understand really how narcolepsy affects people and how they feel, this helps alot.
Thank you so much for this response. It means a lot to me to hear that my post was helpful to you.
Thank you so much, Michele. Narcolepsy can be challenging to explain, it gets a bit easier over the years, but art is a great way to express the things that are hard to explain in words. So glad you enjoyed Tim’s work as much as I did!