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?! 😉
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:
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.
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.
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.
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.