Although several specialist failed to refer me to a Sleep Specialist, I have come to the realization that my own misconceptions about Narcolepsy also delayed my diagnosis. I do not blame myself for these misconceptions. Misleading, uniformed and sometimes even offensive references to Narcolepsy are everywhere. I found one today, in a very unexpected place - on MY bookshelf, in a KNITTING book.
I am working on a special project - which, if goes as planned will hopefully raise money for Narcolepsy, but more importantly awareness. My project involves an on-line auction of donations from yarn/fiber blogger. The auction proceeds are going to help Julie Flygare reach her goal of raising $5000 for Wake Up Narcolepsy. Julie has Narcolepsy and is blogging about her Narcolepsy and training for the Boston Marathon at www.remrunner.blogspot.com
I started writing the official request for donations letter and realized that having a few confirmed donations would help others decide to donate too. Now, I am sure she gets thousands of e-mails, and people ask her for things ALL the time, but if I could get Stephanie Pearl-McPhee, also known as The Yarn Harlot, founder of Knitters without Borders - which has raised over ONE MILLION dollars for Doctors without Borders - to donate to the auction my goals of raising money and awareness are practically guaranteed. If even half of her over 13,000 Google Reader subscribers read Julie's Blog I will consider the auction a success.
So, I started writing her an e-mail and I got a little stuck. It is so hard to find the words to explain how my life has been impacted by Narcolepsy - and why I want to help Julie - and why I think knitters are people who most likely to understand living with a rare, misunderstood and often caricatured disorder.
I was really struggling with my words, and having to get up and move around from time to time to stay alert. I own and have read several of Stephanie's books - great books about knitting and being a knitter, but I have not read every one of her posts. I did a quick Google - Yarn Harlot Narcolepsy - just to make sure her life hasn't been affected by Narcolepsy - if it has, I am certain she would have blogged about it.
This is what Google "found":
Results 1 - 10 of about 1,360 for yarn harlot narcolepsy. (0.37 seconds)
Search Results
- Yarn Harlot: The Secret Life of a Knitter - Google Books ResultStephanie Pearl-McPhee - 2005 - Crafts & Hobbies - 240 pages
Not only do men want sweaters so plain they could give you narcolepsy, not only do they want them in boring colors without even a little "yarn over" to keep ...
books.google.com/books?isbn=0740750372... - - Yarn Harlot - 2 visits - Jan 31
Jan 29, 2010 ... Stephanie Pearl-McPhee goes on (and on) about knitting.
- Yarn Harlot: August 2006 Archives
I set the book aside for a little while yesterday, and spent a little time away from the narcoleptic glow of my computer screen. ...
The first link is an excerpt from her book, "The Secret Life of the Knitter." I will quote only a small portion of the text to avoid any copyright infringement. "... men want sweaters so plain they could give you Narcolepsy."
At first, I was really angry. Not Stephanie... I thought, I own this book, it's my bookshelf! And then I started to cry. I read this book, and enjoyed it. It was a fun read.
(I just finished knitting these mittens and couldn't resist a quick moment to brag. They are for my mom, and my next post will dedicated to her and will include details about the mittens.)
I read this book at a time when I was really struggling with Narcolepsy, but years away from a diagnosis. I didn't think anything of the reference when I read it, I might have even laughed.
In early 2005 I was working as a Phlebotomist. I enjoyed the little chats I would have with my patients to help them relax and distract them from the needle going into their vein. I remember one patient very vividly. She was wearing scrubs, so I asked her about her job. She said she was a Polysomnographer - she performed Sleep Studies which are used to diagnose sleep disorders.
Some people may find this unprofessional, but I asked her if I could tell her about a sleep issue that had been having, and she said yes. So I told her about my episodes of what I now know to be Lucid Dreaming with Sleep Paralysis, and that these "episodes" started after I had surgery to remove a lesion from my Hypothalamus. She didn't even have to think before she said, "sounds like Narcolepsy". The blood draw was over, it was a busy out-patient lab, so I thanked her and she left.
Now, the first question this story asks is: Why was a Polysomnographer so quick to diagnose my Narcolepsy, and all of the Physicians (all highly trained Specialists - including a Brain Surgeon), failed to refer me to a Sleep Specialist after hearing me describe my "episodes"?
The second question is: Why didn't I believe her?
To be honest, I thought that people with Narcolepsy fell asleep in the middle of conversations without any warning. Now, let me be clear, there are people with Narcolepsy who have this type of severe Sleep Attack. It never occurred to me that a person with Narcolepsy might also feel tired before suddenly falling asleep or that there may be other symptoms - like sleep paralysis. I also had already been through a lot, and was not ready to take on what felt like the burden of another "label". I may have told this story to only one other person, my mom. It feels good to get it out. I only wish I could find that Polysomnographer - I bet she'd get a kick out of knowing how she was the first to outsmart all of those White coats with Ivy League affiliations!
So, I wrote Stephanie an e-mail. The e-mail was similar to this post, but I didn't describe my conversation with the Polysomnographer. I thanked her though, for helping me face my own past misconceptions about Narcolepsy. I then asked her to help me educate people about Narcolepsy by donating to the auction. I let her know I'd be blogging about it, not to call her out but to help me face my past misconceptions. She must get hundreds of e-mails a day, with many of them asking for help. Knitting Needles crossed - as the knitters say. I'll keep you posted .....
A "full-circle" day for a Knitter with Narcolepsy!
On a quick side note I finished Cathy's Afghan, and gave it to her on Christmas Day. She e-mailed me to tell how beautiful everyone though it was - but what was I calling it again? (she requested it be "smaller" so it's not quite full afghan size) I told her could call it anything she wanted - she replied: "toasty awesome". And there is good news! Her new Chemo is working - they were able to lower dose so the side effects aren't as bad - and her growing back!
DISCLAIMER
1) I am NOT a Medical Professional. Nothing in this blog is intended as Medical Advice.
2) If you read something about Narcolepsy on this blog that you find to be incorrect, unclear, offensive or interesting please e-mail me at knittingwithnarcolepsy@gmail.com
3) I am a BAD ASS knitter. Everything in this blog that relates yarn (and other related fibers and materials) may and possibly should be used as crafty advice.
4) I LOVE links. I use Wikipedia whenever possible for continuity.
5) I am blogging anonymously in order to avoid any discrimination from current of future employers. Please respect my anonymity. If you know who I am, which many of you do, please do NOT use my name in your comments.
Thank you for blogging about our efforts to raise funds and awareness for narcolepsy. I look forward to working with you on this project. I truly believe that by bringing our two worlds together - running and knitting - we're building a brighter future for narcolepsy!
ReplyDeleteAlso, I really liked what you wrote about your misconceptions of "narcolepsy" hindering a more timely diagnosis. I had a very similar experience and I've heard so many similar stories in the narcolepsy community. It breaks my heart -- yet, I'm hopeful for the future. Speaking out about the realities of narcolepsy is a huge step in the right direction.
Happy blogging. Talk soon,
Julie (a.k.a. the REM Runner)
I think you do a great job raising awareness and calling people on the stupidity of using the word "narcolepsy" so carelessly. It reminds me of when I would get angry with my kids when they were in Middle School and would through the term "retarded" around at anything they didn't like. I warned them that they might accidently hurt someone very much that way. We all have to learn to be more careful the way we use labels and to think about what we are saying! Good Work
ReplyDelete