I received the following comment on my recent blog post and wanted to respond here.
Dear N. Leptic,
Thank you for taking an interest in learning more about my experience with narcolepsy. First of all, I am so sorry to hear about your challenging experience with narcolepsy. It sounds like you are facing some very real and significant adversity. You also seem like a strong and courageous person who is seeking out information from your doctor and continuing forward best you can despite facing major challenges. My heart is with you.
What’s my secret?
I don’t have any big secrets about how I cope with narcolepsy. In fact, I wrote a book called Wide Awake and Dreaming: A Memoir of Narcolepsy that documents my experience fairly honestly and in detail. I have stepped outside of my comfort zone and given up a large amount of my personal privacy in order to share my experience with this condition, so no big secrets here. Also, I am currently co-founding a leadership program called Rising Voices of Narcolepsy to help other people with narcolepsy effectively tell their story.
If you’re interested in my exact treatment regimen, I will share it here, but I must emphasize that what works for me may not work for you and to always consult a doctor about treatment options. I am not a doctor. Currently, I take 3.5 grams of Xyrem twice a night and 15 mg of extended release Adderall once a day in the morning.
I am also prescribed 25 mg pills of venlafaxine to take on an “emergency” basis for my cataplexy, if my cataplexy is really bad. In these cases, I take about 1/8th of the pill, as I’ve found this is enough to reduce my cataplexy without having terrible side effects. So, maybe about 5 – 10 times a year, I take 1/8th of 25 mg venlafaxine to relieve my cataplexy.
In addition, a daily nap (or two) is an essential part of my treatment. Some people with narcolepsy find naps restorative. Others do not. I am one of those people who finds some important temporary relief from 15-30 minute naps and I *try* to take them daily.
Am I a “typical” person with narcolepsy?
NO, I am NOT a typical person with narcolepsy. Here’s why:
1. I don’t believe a “typical” person with narcolepsy exists. I have met hundreds of people living with type 1 narcolepsy with cataplexy, type 2 narcolepsy without cataplexy and idiopathic hypersomnia and I haven’t met two people with the same experience. People’s symptoms and responsiveness to treatments vary significantly. Furthermore, beyond narcolepsy – people’s life circumstances are so vastly different.
In training to be a speaker, I’ve learned to speak to my personal experience only, and I try to avoid using any extreme sweeping phrases like “all”, “none”, “everyone”, “no one”, “always” or “never”. I’ve learned that these terms can be polarizing, and may make a speaker’s message less credible in the opinion of the viewer/listener/audience member. In Rising Voices of Narcolepsy, we will train speakers and writers on using first-hand experience storytelling.
2. I have responded well to treatments. I am acutely aware that some people with narcolepsy face intolerable side effects and tolerance issues. I have experienced strong side effects but I have managed to stay on treatment now for 9 years and I am extremely grateful for the pockets of productivity I have found thanks to the fact that I have responded pretty well and found a treatment regimen that works for me right now.
3. I had many advantages when I was diagnosed with narcolepsy.
- My family was upper middle class and helped pay for treatments when my health insurance benefits ran out quickly and before my COBRA health insurance kicked in.
- I was a law student with a strong educational background and the Dean of my law school was extremely understanding and accommodating.
- I had an expert neurologist who worked with me for years to tweak my treatments and find a tolerable balance that works well for me.
- I have no other major health conditions to contend with.
- I had a wonderful therapist who helped me navigate the incredible sense of loss, isolation and anger I felt toward narcolepsy. My therapist also helped me process my ultimate decision not to practice law after graduating, something that was really hard for me to come to terms with at the time.
- I experienced symptoms for about 3- 5 years before being diagnosed, which isn’t great, but others have gone longer without diagnosis or with misdiagnosis. These delays increase the chances of narcolepsy causing safety issues and/or affecting one’s personal and professional life before one even knows what one is dealing with.
- I was diagnosed in 2007, when some of the current first-line treatments were already FDA approved and available. While these options are NOT perfect nor right for everyone, there were even fewer options available in the 70’s, 80’s and 90’s.
Even with all these advantages, narcolepsy brought me down to an all-time low. I watched narcolepsy steal my ability to work long hours, something I was “known for” in high school and college. I watched this sneaky insidious neurological condition wreck havoc upon my waking and night life, but all the time behind the scenes, invisible to those around me. And I watched in amazement that my very real neurological condition oddly shared the same name as some other thing called “narcolepsy” that was socially acceptable to laugh out loud at on TV and in movies.
So I wondered, “What about people that don’t have my same advantages? How badly might this affect others who don’t have the same infrastructure and safety net that I was lucky to have?”
This is one of the reasons I chose to give up my privacy and raise my voice, because I am aware that I have had significant advantages and while narcolepsy affects me daily and has been absolutely life-changing, some people are worse off. This breaks my heart and is one of the reasons why I choose to raise awareness and change perceptions.
One point of clarification: narcolepsy is not my career. I feel privileged and honored to work full-time at an amazing pancreatic cancer non-profit organization and volunteer on nights and weekends to raise awareness of narcolepsy and run Project Sleep. However, do not be deceived to think I took a magic carpet ride to get where I am today. Like everyone else, I face adversity in my life, some related to narcolepsy, some not. I don’t think we need to tally our scars against one another, but rather I’d like for us to stand together and support one another as we each try to pick up the pieces of our lives best we can.
I do not know what challenges lie ahead for myself, for those I love, or for others living with narcolepsy. I do not know if my medication will stop working tomorrow or if I will discover a new source of joy and positive energy this afternoon. I am doing my best with what I’ve got today, I think that’s the best we can all do.
In closing, I will leave you with some of the best advice I ever received: “If you don’t like what someone else is saying, stand on your own platform and speak louder.” This is what I did 7 years ago when I was fed up with seeing depictions of narcolepsy in the media and movies that didn’t resonate with my experience, I started this blog at my initial platform to speak my truth. So I hope you will consider turning your passion into action and looking for ways to raise awareness in your community because YOU MATTER. YOUR VOICE MATTERS. YOUR STORY MATTERS. And I am cheering for you.
Sending wakefulness your way,