“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” -Martin Luther King, Jr.
Flashback to January 2017. I knew I wanted to start a blog and I knew that my first post was going to be about “Hidden Figures.” What I didn’t know was EVERYTHING ELSE.
I hadn’t been diagnosed with narcolepsy but I knew my grad school situation was untenable. I couldn’t hold down a 9-5 job 5 days/week so I took up substitute teaching and hoped that plus a record of my writing would be “good enough” for a future employer if I ever sorted out my health issues.
Narrator: How is she smiling? Because she showed up to the department as herself. For the first time ever.
Thomas Jefferson’s University. *eyes roll so hard they pop out of head*
My least favorite place in the world.
Welcome to my office. Or at least the part I used.
Assorted stimulants. Will trade for GHB. (JUST KIDDING IM NOT LOOKING FOR A DEALER I ALREADY HAVE ONE THANKS JAZZ PHARMA.)
2017 was a year of adventure and abundant creativity, but also one of intense anger, confusion, and betrayal. My New Year’s Resolution was to reduce food waste and hell if that didn’t fade out of view by the second grocery shopping trip of January.
And then narcolepsy. I tried to fight against my labels but spiraled into denial when I compared myself, my accomplishments, and my potential to that of a fictitious non-narcoleptic version of myself. Spoiler alert: she has better time management skills, organizational skills, more wakefulness, and OH YEAH! She doesn’t exist. I felt betrayed by the medical profession and the three neurologists who gave me a full workup and declared that I was perfectly healthy. I’ve fantasized about dropping burning piles of poo on the doorsteps of many doctors; not just those three neurologists, but also the know-it-all general practitioners, allergists, cardiologists, psychiatrists, psychologists, etc. who didn’t have the guts to say “Something’s wrong, but I don’t know the answer.” Apparently I still have some anger to work through.
The Diagnosis threw me into an identity crisis and I think that crisis ironically came from me realizing that I knew more about myself than I thought I did. I was finally able to look at my narrative about myself and see clearly the passages that others had added. I wasn’t lazy or unmotivated or stupid. I was clinically sleepy beyond reason which is what my body had been telling me and what I had been telling the doctors. Over the years I let them convince me that I was wrong, and now, with The Diagnosis in hand, I had control. For the first time in my life I let my creativity take the reigns and I launched an accessories brand – sleep&sparkle – that challenged me in ways that I hadn’t been challenged before, but also used many of my strengths and fed a passion for sartorial expression which I kept deep inside of me as soon as I graduated from high school. Somehow, The Diagnosis put me in touch with the deepest parts of myself and empowered me to believe that I deserved to be happy and to create a life doing something that I loved. My husband and grandma had been telling me this for years, but until The Diagnosis, their words might as well have been in a foreign language.
In 2018 I’m ditching the resolutions and opting for a WORD. A word that will be the lens through which I filter my thoughts and actions. A word that will push me outside of my comfort zone while also pushing me in the direction I want to go. My word for 2018 is EMBRACE. I fought it for weeks in December until I finally caved and realized that my resistance was a serious indicator of how much I needed this word. I was hoping for something bigger that set off fireworks and felt exceptional like BRAVE or FIERCE or PRESENT or INQUISITIVE, but I kept coming back to my frustration with my sleepiness, my inability to accept good things that were happening to me and because of me, and my fear that I would always be angry and bitter about The FUCKING Diagnosis.
“Why am I so mean to myself? Why can’t I accept who I am, what I am, how I am? Why can’t I EMBRACE this beautiful thing called life that I’m working so hard to make but can’t seem to appreciate?” Hence, EMBRACE.
The work of this year is to EMBRACE all of these things and so much more. It is to EMBRACE my weaknesses and failures but even more importantly my strengths and successes. It is to EMBRACE my anger and bitterness while also EMBRACING my creativity, my enthusiasm, and that I am more than my story and my circumstances. It is to EMBRACE the opportunities and the relationships that make my heart happy. It is to EMBRACE me, the way that my grandma and husband did years ago.
Bonne année, my friends!
What are your resolutions, words, ideas, as you enter 2018? Or do you opt for nothing at all?
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.