Community and Connection in Chronic Illness

Happy Tuesday, friends! I’m trying to get into a Tuesday/Thursday/Saturday publishing cycle, instead of posting at random times throughout the week. This is the second post in that effort.


Do you have your people? The ones who help you reset and keep things in perspective? Over the weekend I went to my first narcolepsy support group meeting since moving to CT and it gave me a renewed sense of hope and community.  There were folks at the meeting who were diagnosed just this month, after decades of confusion and questioning. I remember 10 months ago when that was me and for the first time in years I felt like I had a future.

Support groups can be lifesavers for many following their diagnosis day.  My diagnosis day was a day of celebration but the elation was soon followed by anger, grief, and a sense of loss.  Not to mention complete overwhelm as my doctor gave me information about possible therapies which led to a dark research spiral into the bowels of the internet.  I had so many questions about, really, EVERYTHING, and I was lucky to be able to meet other people with narcolepsy face-to-face within two months of my diagnosis to dig into all of the things that I wanted to know.  That first support group meeting was filled with compassion, hugs, and so many tears.  The people who sat around the table were fighting the same fight and we finished each others sentences.  I felt safe and I felt SEEN.  I felt worthy, and I knew that these people believed me.

No matter where you are on your journey – diagnosed, undiagnosed, chronic or acute illness – this is your weekly reminder that you are worthy and deserving of connection.  The diagnosis journeys that so many of us are on can take a serious toll on our sense of self worth and on our sense of belonging. The medical profession has a lot of work to do when it comes to listening to patients’ stories and trusting what we know about our own bodies.  It feels HORRIBLE when the doctor reads your test results and exclaims that “you are perfectly healthy, there’s nowhere else to go from here.”

Regardless of how your most recent doctor visit went, you are fabulous, you are worthy, you are deserving. And I believe you.

I know that not everybody has the opportunity to meet with a support group face-to-face.  Good thing there are alternatives!  I love this article about social media as therapy, written by my friend Elle on her website www.falling-asleep.com. Below are links to a few other websites that have resources for those with narcolepsy and other chronic illness.

Visit the Resources page for more ideas. Note that you might see diminishing returns to your investment in support communities. This is a thoughtful article on the possible downsides of support groups.


These recommendations are not meant to substitute for care from a licensed physician and/or therapist and for medication.

On Hallucinations

“A hallucination is a fact not an error; what is erroneous is a judgment based upon it.”

-Bertrand Russell

#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.

Half Birthday

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.

Happy half birthday to me and SLEEP&SPARKLE!

Sewing, style, and sleep: interviewed by “The Daily Sew”

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.

The gorgeous Mary Sigler!

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:


And now on to the interview

Rocking a thrifted purse, grandma’s necklace, and a SLEEP&SPARKLE headscarf.

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.

Tatting with two shuttles can be a lot to manage, but it’s still easier than trying to make and fit a pair of pants, which is why that is something that I have never done to date.

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.

Sewing in straight lines is my jam!

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.

I’m 25% Armenian, through my grandma Armistice (born on Armistice day and married on July 4.  The proudest American you will ever meet!).  My great grandma, Adele, used to make bobbin lace by moonlight in Syria, before emigrating to America to flea the genocide.
Why yes I wear sunglasses inside if it completes a look.  #styleschoolskills And yes, this is the rainbow stripe coat that my mother made, where she matched every stripe that could possible be matched, including on the breast pocket.  No, I would never set out to do something like this.

 

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.

A particularly triumphant day.  Wearing one of my favorite SLEEP&SPARKLE headscarves after a meeting with somebody at the University of Virginia’s student health clinic, where they agreed to let me write a brochure on sleep disorders to promote awareness among students AND practitioners.

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.

Wearing a shirt created by Prisca Kim after her son JJ wore this sign during the Women’s March: I HEART NAPS BUT I STAY WOKE.  Find them here.

Thank you all so much for reading! Be sure to follow the “The Daily Sew” and you can find Mary on instagram @thedailysew and on Facebook @dailysew.

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.

And if you’d like to talk about sleep, please use the contact form on my blog to send me an email, or DM me on instagram @curioussparkledirt or on my Facebook page @curioussparkledirt.