Blog

Choosing Life

Choosing Life

Personal Story
Choosing life didn't even feel like an option when I was depressed...  I was 18 years old, and for the previous months, I had been applying to colleges. But I didn’t see myself [caption id="attachment_976" align="alignright" width="225"] This was me in April 2010[/caption] there. I didn’t see myself anywhere. I wanted to vanish. Sometimes I sat in my prestigious school with all my genius classmates and just tried to make myself disappear, molecule by molecule. I usually only succeeded with my hair; chopping it off various times to make myself feel smaller or less visible. I never told anyone how much I thought about suicide. I was raised going to Catholic Church and I believed it was one of those big sins you could never be forgiven for. For years…
Read More
Letter From a Person Living with Narcolepsy

Letter From a Person Living with Narcolepsy

Narcolepsy, Personal Story
Dear friend, Do you remember that time we had big plans to do something amazing on the weekend and I told you at the last minute that I really wanted to go but I just couldn’t do it? Well, I remember it. Because it was hard for me to make the decision to take care of myself instead of going to do something fun that I was really looking forward to. Instead, I spent the day making sure I had healthy food lined up for the week. I took a few short controlled naps. I drank a gallon of water and meditated. I arranged my calendar for the week so I would not miss any appointments, forget to pick up my prescriptions or miss a due date for my bills.…
Read More
How to Treat Narcolepsy

How to Treat Narcolepsy

Diet, Lifestyle, Mindset, Narcolepsy
There are a million resources out there that will tell you how to treat narcolepsy medically including various stimulants, or other medications like Baclofen, or Xyrem. There are also some new medications being tested that sound promising, but I don't have any personal experience with those. For some people, when they receive the right combination of medications, their narcolepsy is managed well and they go on with their life, which is amazing.  But for many of us, the medications alone don’t give us the results we desire. Physically our bodies are all different and mentally we are all in different places as well. So, it makes sense we all need different things to treat narcolepsy symptoms. (more…)
Read More
From Self-Hate to Self-Love

From Self-Hate to Self-Love

Mindset, Personal Story
Her small hands hesitate just the slightest bit as they brush over the thick pink scars.  Brown eyes meet mine and then immediately flick back down to the rushing water of the pedicure chair. Her eyes pry, "What happened to you?" or "Who did this to you?" I can't be sure which. (more…)
Read More
Tell me how you take time to love yourself!

Tell me how you take time to love yourself!

Narcolepsy
Write down the five things that are most important to you in the whole world. I'll wait a moment while you do that…. If you are anything like me, your list may include values like independence or peace; it may consist of goals or aspirations, or people like your family or friends. But tell me, are YOU on that list? (more…)
Read More
My New Year’s Revolution

My New Year’s Revolution

Mindset, Narcolepsy
Most New Year's Resolutions I have made in the past have been about changing myself.  They could be changing my appearance, like losing weight or taking better care of my skin. Others have been about making more money or saving more money in the hopes of feeling a certain way.  Some have been about exercising more, doing more meditation, or reading more books. But this year I am going to try something different. (more…)
Read More
Breaking up with Keto

Breaking up with Keto

Mindset, Personal Story
So, I've got a theory.  A theory that I am ready to test out.  My theory is that my mind is more powerful than my body.  You see, my whole life I've worked to try to fix my body, trying to do things to it to make it better, to change it.  For as long as I can remember, I have fought with my body. Today I've decided to surrender. When I was about 13 years old, I was diagnosed with narcolepsy.  It was a diagnosis that my parents and I had been searching for over a number of years to explain the insurmountable sleepiness and lack of energy I was experiencing.  I took that diagnosis and wrapped it around me like a security blanket. It was the explanation for…
Read More
Cataplexy in a Cathedral

Cataplexy in a Cathedral

Narcolepsy, Personal Story, Travel
Sharing a plate of fried watercress, a heaping dish of tea leaf salad, and a bowl of eggplant curry, I found myself saying more about my chronic illness than I ever expected to disclose on a first encounter. I heard myself explaining things my body does in words I had never strung together verbally before. Maybe it was the second glass of wine, or maybe it was the humid air, the colorful Myanmar decor, and the attentive listener on the other side of the able. He seemed genuinely interested in how a person with narcolepsy had come to travel as a lifestyle choice. (more…)
Read More