“A hallucination is a fact not an error; what is erroneous is a judgment based upon it.”
#tbt to #Cologne in May. I was rounding out my first month on Xyrem and experiencing (relatively) dreamless, restorative sleep for the first time in my life. The hallucinations only started disappearing more recently. Before diagnosis I would go about my day with strange notions of what to expect and weird interactions with people that I couldn’t explain. My dissertation advisor would ask me if I’d gotten the email she sent me and I would be completely confused – um, of course I got your email and I responded to it yesterday morning. I had the tactile, visual, full sensory experience of typing out the email on my phone except that it never actually happened.
People with narcolepsy can experience hypnagogic (falling asleep) and hypnopompic (waking up) hallucinations that scientists think are related to semiconscious REM sleep. My hallucinations are rarely violent or frightening (as outlined in many descriptions of narcolepsy) but they are always disruptive and disorienting.
I recently found this quote from BR and it hit me in the gut because it so perfectly captures why I was in a constant state of confusion pre-diagnosis.
SLEEP&SPARKLE is my life right now. I’m trying to build my brand and grow my company into something fabulous. I’ve cut down on writing over here because I worry that posts about work will be perceived as all self-promotion-y. Where do these voices come from? Who says that? It finally occurred to me (I can be dense sometimes) that if someone hates that I’m writing about building my business they can unfollow me! #revelation
So let’s get on with it!
SLEEP&SPARKLE turned 6 months old yesterday! YESSS! I launched the website on June 5. Life is so good right now. I can’t believe that I’m a person with narcolepsy AND I’m doing something I love. While I didn’t have a diagnosis until this year, I’ve fought sleepiness (and related symptoms) ever since I can remember. I battled to keep them from dictating my life but they did, and until I started Xyrem, I couldn’t envision a future where I would be able to make a living doing something that I love, something that is so stimulating, so creative, so engaging, and so all encompassing. Maybe “make a living” is way too generous a phrase at this point in my company’s life. But I see a path forward for the first time ever. And to be honest, I can see a LOT of paths forward! Whether sleep&sparkle is a success or falls flat, I know that I’m going to be okay.
Did you know that ADD/ADHD, depression, bipolar disorder, and schizophrenia are common misdiagnoses for sleep disorders like narcolepsy? Sleep disorders are a lot more subtle than a person falling asleep in the middle of a conversation, despite what we see in pop culture. People with sleep disorders, like myself, learn to adapt to our bodies gentle signals of sleepiness and can adopt behaviors that make the sleepiness appear differently than it is (e.g. binge eating, watching television, reading a book during class, procrastinating, and other self-stimulating behaviors).
The Epworth Sleepiness Scale is a tool used by physicians to screen for sleep disorders (note: it is NOT a diagnostic tool). In an ideal world, general practitioners would be well versed in the ESS and administer it to all patients who complain of sleepiness*. They would then refer patients to a board certified sleep neurologist for further testing when appropriate. However, that is not currently the case and sleep disorders go misdiagnosed or undiagnosed for YEARS in the average sleep disordered patient.
I am not a doctor and I encourage you to discuss your concerns with a physician as soon as possible. Not all doctors are familiar with sleep disorders. You may have to be proactive and while your journey may start with your primary care doctor, it’s important to consult a board-certified sleep specialist. (Source.) Also note that medications you are taking (e.g. stimulants or sedatives) might impact your answers.
*Note that many people (including me) use “sleepiness”, “exhaustion”, “tiredness”, and “fatigue” interchangeably. This can be confusing to doctors, so be sure you think about what you are actually experiencing. Are you losing consciousness? Then use the word “sleepy”.
For each situation, choose the value that is most appropriate for you.
0 = no chance of dozing
1 = slight chance of dozing
2 = moderate chance of dozing
3 = high chance of dozing.
Sitting and reading.
Sitting inactive in a public place (e.g. A theater or a meeting).
As a passenger in a car for an hour without a break.
Lying down to rest in the afternoon when the circumstances permit.
Sitting and talking to someone.
Sitting quietly after a lunch without alcohol.
In a car, while stopped for a few minutes in traffic.
Total your score.
1-6: Congratulations, you are getting enough sleep!
7-8: Your score is average.
9 and up: seek the advice of a sleep specialist without delay.
I met Mary in the Style School alum group but I KNEW of Mary and her inspiring Daily Sew blog long before that. Mary’s post about Stasia’s Style School is actually one of the things that led me to pull the trigger and sign up for Style School after years of internet stalking Stasia and sinking into a grad school-induced style hell. I had an idea of Style School that was girly and frivolous (read: I made up lame excuses to not do it because I was so scared about what might happen if I reconnected to old and powerful parts of my personality!) so Mary’s post made me rethink everything: if a bad-ass, feminist / activist / maker / guru can go through this and come out better for it, then sign me up.
I was incredibly honored that Mary interviewed me this past month for “The Daily Sew” after buying her first SLEEP&SPARKLE headscarf and then finding out that I sew them myself. We talked about sewing, style, and sleep. But first, check out a few of my favorite posts on The Daily Sew:
Why I Failed the Me-Made-May Challenge (I love when super talented people are super real about life! I was intimidated by her before our interview and when I read this I thought, “she’s human, too. A super talented human, but still human.” ❤ ❤ ❤ )
And now on to the interview
Mary: I love your style. Can you give us some insight to how it represents you?
Me: I grew up around a lot of color. My mom and grandmother were both fiber artists and there were no rules about playing with my grandmother’s fabric. I was allowed to play and make mistakes with it.
I was a gypsy for Halloween for so many years using the fabrics and costume jewelry from my grandmother.
My mom always bought fabric with a project in mind so her stash was off limits but my grandma had no rules. Her philosophy was to buy what she loved and then maybe make something from it. And being an immigrant she kept everything.
You sewed from a young age?
Well, I grew up on handwork, mostly tatting and learning Belgian bobbin lace making. Sewing came later.
What did you like about handwork?
Tatting is repetitive and easy to pick up and put down. You can start and stop in the middle. Sewing takes more steps which can make me antsy; it’s the transitions that sewing has. There’s sewing, reading the instructions, pressing. I got distracted and sleepy. So when I sewed I stuck to fast projects like simple patterns.
I love draping though, it’s relatively easy and stimulating. You can pick it up and see immediately the change in front of you.
When did you learn to sew?
When I was about seven or eight I took a class that my grandmother taught at G Street Fabrics (A most awesome DC metro area store). I think we made backpacks.
My grandmother had a huge influence on me even after we moved away from her. When she would come to visit she would stay awhile. And we would spend the summers with her. She’s very creative.
What’s your sewing style?
I am somewhere in between my mom and my grandmother when it comes to collecting fabric. Sometimes I buy with a vision of making something particular and sometimes I buy because I’m drawn to it.
I actually wear a lot of things from my grandmother and mother. Their hand-made hand-me-downs. My mom was an engineer when it came to sewing. She would make clothes out of striped fabrics and ALL of her stripes matched exactly.
What do you enjoy about sewing?
I don’t like making clothes. Maybe if I draped them to make the fit better I would like sewing clothes more.
But I love making crafts – totes, headscarves, quilts. I love being able to say “I made this.” It is nice to be surrounded by things that are consistent with my values. To be able to set aside the time to make something; to follow through on the intention, to express my creativity. To say to myself, “I’m setting out to do something besides watching television.” I want to sit down and finish something. I want to be cloaked in my values.
So you are making something lately. Something cloaked in your values. Tell us about your new company, Sleep & Sparkle. What is it and how did you come up with the idea for it?
The idea behind SLEEP&SPARKLE is to make creative, comfortable head accessories that help people express themselves.
It started back in April when I posted a story on Instagram of a headscarf I made with a wire insert: “Look what I did with wire”. People asked “Wait. What did you do?”. They seemed to like it and I had always thought if I got my act together I would open an etsy shop.
I had just been diagnosed with narcolepsy. I had extended my medical leave of absence from graduate school because I wasn’t sure how I would do on the medication. Well, the medication seem to have immediate effect. Suddenly I had more free time; time when I wasn’t sleeping. And so I quickly sewed up 30 of these wired head scarves and mailed them out to the women who had seen the first one I made.
I got positive feedback on the prototypes so suddenly, whenever I was awake it was “get out of my way, I have work to do!” I don’t ever remember a time before starting narcolepsy treatment when I had this much wakefulness, and this ability to follow through. After starting treatment I was either working on making the website or the scarves.
The narcolepsy story is really interesting and a big part of your story. Do you mind sharing?
I’ve had narcolepsy since I was about 7 or 8 years old. It was only just properly diagnosed this February, and I started treatment in April. I never knew what it was like to feel normal. Activism for mental health and chronic health are really important to me because I went misdiagnosed and mismedicated for 20 years. I want to increase awareness about sleep disorders because they are extremely hard to diagnose and frequently mistaken for mental health issues like ADD/ADHD, depression, bipolar disorder, and even schizophrenia.
My number one message on this topic to everybody is that you know your body better than anybody else; better than any doctor, and you are the only one who knows if something is truly wrong. I want every person to feel empowered to fight for their health and for proper care and it starts with us learning that we are trustworthy and that our bodies are trustworthy. and. We are worthy and deserve to fight for a healthy life which can be a tough message to internalize for people with rare and orphan illnesses that doctors are not familiar with.
If you are interested in learning more about tatting or Belgian bobbin lace, you can find a teacher near you by contacting the International Organization of Lace, Inc, of which I was a proud, card-carrying member until my grandma stopped paying our dues.