Working with Narcolepsy: Part III – When Caring Comes Naturally

by julie on August 22, 2015

city of hope there is no profit in curing the body if in the process we destroy the soul

After my boss and leadership got even more involved – the nap room situation improved quickly. (Read Part I and Part II of this story.)

Nap Bench on the Move:

The nap bench was moved again, this time to a small room on the second floor along a nice secluded quiet hallway. The door’s sign was changed to Wellness Room.

Around this time, we got a new HR representative and when she came to introduce herself, I was skeptical and guarded…. But not for long. A few days after we met, she rushed over and approached my boss and me.

“I was just checking on the Wellness Room upstairs, as I do everyday, “ she explained in a fluster, “and the bench is gone! I found it in a nearby conference room, someone must have moved it without realizing….”

Ugh. We discussed briefly. Should we call maintenance or security to move it back? Before I knew it, my boss and new HR rep sped off together, on a mission.

In business attire and high heels, these two women moved my bulky nap bench back into the Wellness Room on their own. 

I think this moment pretty much sums up everything you need to know about where I work and the people I work with.

The TWO Awesome Wellness Rooms:

Ultimately, with the support of an amazing team, the situation was fully resolved in mid-March. My office now has TWO designated Wellness Rooms, so if one is occupied, I can use the other. Both rooms have locks on the doors and cushioned benches. My boss also requested sliding “Vacant/Occupied” signs for the doors to help determine if someone else is using the room without having to knock. This was her idea, I was skeptical that people would use the signs, but everyone is and it’s really helpful.

The funny thing is – the Wellness Rooms are busy! Not with phone calls anymore, but with people resting, meditating and napping. So while I get kind of annoyed when my favorite of the two rooms is occupied,  I also feel a strange sense of satisfaction.

The rooms provide relief from the brightly lit, glass-boxed “open space” cubicle environment. While I’m the person that really “needed” this, others need it too. I LOVE when a co-worker mentions using the room. It makes me feel less weird. Who knows, there could be others with sleep disorders in our 800-person building, maybe even a fellow PWN?!  😉

Sporting my shirt to work on a casual Friday

Sporting my shirt to work on a casual Friday

Since then, I continue opening up slowly about my napping. I can say to one co-worker, “I’m going for my nap now” and feel not too strange about it. But mostly, I don’t mention it – I just get up with my backpack (to carry my cozy fleece blanket) and head to the room.

A Whole New World:

Napping has made a WORLD of difference in my health and happiness. Short naps are not restorative for all PWNs, but they are for me. Some improvements:

  • I reduced my stimulants back down to my preferred half dose, which helps me through the mornings and I rely on my naps to get me through the afternoon/evenings.
  • I no longer have to be constantly thinking about how I am going to avoid sleep or sneak away to my car to nap – all those mental games and tricks are exhausting. I can eat lunch if I feel like, without the fear of impending sleepiness – it’s okay.
  • Sometimes I wake up from my naps feeling “off” from a hypnagogic hallucination, so I stay laying in the dark for a few extra minutes to adjust back to reality before returning to my desk.
  • When I do return to work, I don’t always feel like a million bucks, but the connections in my head that  I need for concentration, memory and writing are restored, so I am able do my job. I believe that I work hard and meet all of my job duties – with my naps improving my mental clarity and productivity.
  • My 25-mile (40 minutes – 1 hour depending on traffic) commute home after work is infinitely easier. I feel 110% fully aware and rarely need to pull over to nap on my way home.
  • Oddly, I feel less swelling and inflammation in my ankles and wrists and less bloated in my face. I have NO scientific research to back up my anecdotal personal experience. For me, I feel that when I deny my brain’s need to go into REM sleep, the REM sleep doesn’t just disappear into thin air, even if my sleepiness goes away, the REM sleep is still trapped in me and looking for ways to get out, creating stress in other parts of my body, inflammation, swelling, bloating. Again, no science to back up my  personal “theory.” It’s just a hunch and motivation to keep up with my napping. When I nap daily, I feel that I am doing more than relieving the excruciating pressure in the moment, I am also respecting my brain’s unique rhythm and my physical body is thankful in the long-run – less inflamed and achy.

Sharing my Journey:

narcolepsy not alone julie flygare project sleep epatient voice narcoleptic

Just as the nap-room situation was resolving, I got to share my inspiring narcolepsy presentation with my group in honor of National Sleep Awareness Week last March. The nice HR lady joined us too. We gathered in the super fancy conference room for a pot-luck lunch and I shared my story. We laughed and cried. My co-workers asked great questions. It felt amazing to finally explain my disorder on my own terms, the way I like to present it, to the people I work with daily.

narcolepsy presentation at City of Hope julie flygare speaker person with narcolepsy julie flygare epatient wide awake and dreaming

The Deep Dark Pit:

Writing this blog post series has been emotional. Winning the VIA Award for Excellence at work was also emotional.

There remains a deep dark pit within me that knows all too well feelings of defeat, loss, unworthiness and self-guilt. Since law school, I’ve been scrapping by with mostly contract, temp and part-time work. I applied to countless full-time jobs. I was eager to prove myself. To work hard. To get a regular paycheck and start paying back my law school loans.

To the narcolepsy community, my life may have looked like a “success story” of advocacy, running a marathon, and writing a book. These experiences were incredible but the financial strain was immense and I often didn’t know how I’d pay bills the next month. I kept applying and applying, hoping to get my foot in the door somewhere.

An Incredible Opportunity:

Then, 14 months ago, I was given a chance. Not just any chance, the chance to be a writer at an amazing cancer research institute, to translate science and health into human terms with emotion and grace. My kind of challenge!

While I am still “just getting by” financially, I am surviving independently and paying back my law school loans – yoohoo! I work full-time at City of Hope and run all of Project Sleep’s programming on nights and weekends as a volunteer. I dedicate my vacation days to speaking engagements. I am managing my health and trying to relax every once in a while.

So for me, this job is an honor. It’s still work, it’s not always fun or easy, but I feel lucky to be able to work, that I am both well enough to work and that I have the most amazing boss and group of supervisors and co-workers, who have supported me every step of the way.

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I heart my City of Hope cap.

 

What People with Narcolepsy Face:

I am all too aware of the fact that many people with narcolepsy are not so lucky. Some people’s symptoms are non-responsive to treatments, they have intolerable side effects or don’t have access to the treatments I rely on to function at this capacity. Others have faced unfair discrimination and ridicule in the workplace.

All of this absolutely breaks my heart. I do not pretend to have answers for all the problems facing our community. I am just one person trying to get by, put a roof over my head, and in my few hours of free time – make a difference in the ways that make the most sense for me.

Not everyone with narcolepsy will have the same work experience, there are many factors related and unrelated to narcolepsy that shape our journeys. I am sharing my experience NOT to represent all people with narcolepsy. My experience is no more valid or true than others; it’s just the story I have to tell. I only hope to point out some of the invisible struggles that I’ve faced and share some of the light at the end of my tunnel.

When Caring Comes Naturally:

Last week, my work group got together to celebrate our VIA Award recipients. When asked to say a few words, I broke down crying. I tried to explain that by supporting me, they are giving hope to our community that people with narcolepsy can be supported in the workplace. Everyone was moved, but I’m not sure they entirely “get” how awesome they are. Caring seems to come so naturally to this group that it’s just how they roll, how we roll.

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My deep pit of darkness hasn’t disappeared entirely, we all have our scars. Slowly but surely, I feel a little less like a failure and a little more like I can belong somewhere, I can add value and succeed in some small way in this world. All this, WITH my narcolepsy publicly in tow for all the world to see.

Ironically, in my job as a writer for City of Hope, I often write about the “hope and healing” that City of Hope brings to people facing cancer. Hope and healing, hope and healing… I write it so often without thinking about it until now. I’ve never had cancer or received treatment at City of Hope, but even in my little cubicle, far from the research labs and hospital, that’s exactly what this place has given me – hope and healing. I’m forever grateful.

Photo taken for my VIA Award in Excellence at City of Hope

Photo taken for my VIA Award in Excellence at City of Hope

 

Read:
Working with Narcolespy: Part I –  I fought the Nap and the Nap Won
Working with Narcolepsy Part II – Hunting for a Nap Room

{ 10 comments… read them below or add one }

Ashley August 23, 2015 at 4:40 am

I rarely get teared up reading but this brought the tears. Perfect.

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Holly Twedt August 23, 2015 at 4:55 am

I so related to this moving story of your experience in your new job. I am unable to work in my beloved profession of a social worker due to sleep disorder issues that negatively impacted me in the workplace. My former employers reported me to the state regarding my work place problems that were sleep disorder related and are trying to remove my license to practice as a social worker. Have some cognitive functioning problems related to the sleep disorder issues and am have mild cognitive impairment. I am not giving up. Somehow I will find meaning and purpose in my life and go on and thrive. I am trusting in my faith in God and resting in this in spite of the above reality.

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Dorothylou Sands August 23, 2015 at 8:08 am

I look back on my years of fighting sleep and feel so thankful that most of the people I worked with were very understanding. A couple did not understand. I was lucky to work where I could run out of the office and lay down in the teachers lounge if only for a few minutes. There were occasions I ate lunch with 4 ladies and dozed off for a few minutes while we were having lunch. Everyone seemed to know this happened to me and they rarely said anything. I didn’t take my medication a lot until the last couple years. I used it mainly for attending night school.

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Grandma August 24, 2015 at 12:51 am

Thank you so much for sharing your experience, strength and hope with others who have Narcolepsy and those of us in a support role. You are such an inspiration to my granddaughter , 22 who was recently diagnosed with Narcolepsy and Cataplexy. Having completed almost 2 years of college, it was a devastating blow to her to find out she had an incurable sleep disorder. She was unable to complete her 2nd semester because of the symptoms and the lack of a competent doctor to treat her. Her whole world was shattered as she had hoped to be able to work with children. She feels isolated, depressed and dependent on others now that she’s no longer able to drive. She is in the process of getting her medications regulated and will soon start on Zyrem. If things go well, and she can make the necessary adjustments, she hopes to continue with her education.
She’s looking forward to participating in the 2nd Annual Project Sleep Event in St. Petersburg, FL next month on Sept. 5. She is hoping you will be there too.

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Gail August 24, 2015 at 6:12 am

Julie, thank you so much for sharing this story! A wellness room seems like it should have been a simple thing, especially when you are so open about your N, and yet your struggle clearly shows how people just don’t “get it”. I think this is a wonderful example that others could use who maybe aren’t able to be as open. I love how it ultimately turned out to be a benefit for so many people! Would you be willing to put this into a downloadable/printable document? I think it could be a useful tool for others to take to their employers in an effort to promote wellness for employees (and PWN in the process!!) Thank you for all that you do!

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Lynne August 26, 2015 at 3:28 am

Julie, I think all PWNs know why you get emotional when HR or individuals at work take a genuine interest in your needs. How wonderful that you have started a trend of sleep wellness at the work place. It takes humility to accept who we are to ourselves and even more humility to ask others to accept who we are and what our needs are.
I think your volunteer efforts are wonderful. But schedule respite every week for yourself. All work and no play will catch up to you. Good luck. And thank you.

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Ben August 26, 2015 at 9:58 am

Julie, you’re awesome… to read this breaks down some of my walls just a little. I cried and I felt things that made me feel human, and like I can do this. Tomorrow may be a bright productive day:) though it’s been rough lately, getting in about an even day per week that’s at all billable. You are so right about “hope” outlook is everything. We love you!

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Sadie August 26, 2015 at 1:09 pm

Your “I fought the nap, and I won” article is amazing! I’m so happy that this has worked for you! Despite challenges of human behavior in others, it sounds like you have incredibly supportive leadership at your company!
Unfortunately my story of fighting for narcolepsy at my company did not work so well. My boss was a dragon, the HR lady was incompetent, and her boss was like the evil witch from wizard of Oz. I tried for a year, then after public humiliation, being wrote up, and living in a dangerous zombie like episode that never seemed to end, I went on LTD. I miss my responsibilities, I miss conversation, the challenges, and most of, respect from the rest of the working world. I followed the appropriate path to get an accommodation at my company, but it blew up in my face. You are so lucky and amazing for advocating for yourself.

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Heather August 28, 2015 at 9:56 am

This one bought tears to my eyes Julie. Can you thank your work place and colleagues on behalf of me too, for being so far-sighted, so kind and so accommodating. They sound like an amazing, truly amazing, bunch of people. And I’m so grateful to you for giving every thing you’ve got to the Narcolepsy community – you’re a legend!!!!!! Big love. Heather & my family.

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Laurie September 7, 2015 at 6:14 pm

Thank you so much for sharing this, and for being open with the dark side of things too. It means a lot more to me (and I would imagine to others) knowing that you are not only an advocate and writer and success story, but also a real person with narcolepsy who has to face the fact that it’s not something we can overcome with will power.
I am 29 and work in a children’s hospital, and I was diagnosed a year and a half ago after going on medical leave for “depression” (major symptom: falling asleep in the bathroom between each patient I saw). Since I returned to work, it’s been an ongoing struggle. I have a “nap room” too (really two chairs in a storage closet), but I have the hardest time using it. Instead I find myself fighting sleep and becoming more and more inefficient, even when I know exactly what I need. There is still a small part of me that still believes that narcolepsy is a fancy name for lazy… if my coworkers don’t need to nap, why should I? My boss has been on board with the accommodations, but at the end of the day I still have to complete exactly as much work as everyone else. I haven’t figured out yet if that is possible.
Your story is giving me hope that one day soon I’ll find the courage to start taking a nap at work EVERY DAY. And maybe I’ll give an in-service to my coworkers. And down the road, maybe I’ll even run another marathon or two 🙂 Thank you!

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