Living Bravely With Chronic Illness – Guest Post by Katie G. Nelson

by julie on August 26, 2015

Narcolepsy: Not Alone

As a 29-year-old, female journalist and photographer, I am accustomed to the words people use to define me; “Fearless”, “gutsy”, “courageous” are just a few.

But, as a woman living with severe narcolepsy, I often struggle to reconcile these one-dimensional characterizations with my own sense of self.

That disconnect was recently underscored when I announced my decision to relocate from Minneapolis, Minnesota to Nairobi, Kenya to pursue a career as a foreign correspondent.

Though my community was deeply supportive of my decision, it was also clear that the inundation of questions and comments about my cross-continental move were becoming more exhausting than the physical move itself.

“You’re so fearless,” an acquaintance told me. “That takes some serious guts,” another remarked.

“But aren’t you afraid?” they both asked.

My response to the latter became almost automatic; an elevator pitch persuading other Americans to view East Africa as a welcoming, vibrant region with incredibly warm, kind people living there.

Though my response was wholeheartedly accurate, it also provided an avenue to circumvent the real question “but aren’t you afraid?”

In truth, I was afraid. Terrified in fact, to establish a new life in a country that was completely and wholly unlike my birthplace.

But it wasn’t the geographical distance or cultural foreignness that shook my foundation. Rather, it was the conceptual cutting of my medical safety net – of leaving my seasoned neurologist, skilled nursing staff and neighborhood pharmacy that reliably stocked my medication – that was so profoundly terrifying.

In fact, it was my biggest fear.

I was 25 when I was diagnosed with narcolepsy, a chronic neurological disorder that causes the body to lose its ability to regulate a sleep/wake cycle. In essence, I – and the 200,000 other Americans like me – experience constant, unrelenting exhaustion despite spending up to 22 hours a day asleep.

For me, my life before January 26, 2012 – the day I took my first dose of medication – consisted of little more than survival.

Tethered to a life beneath my bed sheets and unable to find clarity in the few waking hours I was allowed each day, I slowly transformed into a physical culmination of bone-breaking exhaustion, isolation and profound anger. During those years, I clearly felt myself succumbing to the withering of my own soul, undone.

It took over ten years for my doctors to properly diagnose and treat my sleep disorder, a day that finally came on a chilly January afternoon in 2012.

  • On January 26, 2012 at 12:45pm, I was diagnosed with narcolepsy.
  • On January 26, 2012 at 3:00pm, I took my first dosage of narcolepsy medication.
  • On January 26, 2012 at 3:45pm, my life returned to me – my own personal Lazarus story.

More than three years later, I am not just surviving – I am thriving. I’m following my passion of journalism and photography in one of the most vibrant cities in the world and finding personal meaning in small moments that life failed to provide in my first 25 years on this earth.

But despite the almost indescribable change in my life – managed by a powerful medication regimen and strict sleep schedule – I still remain chained – albeit loosely – to a profound and paralyzing fear that I will lose everything again.

That fear is even more acute because I live in a country where pharmacies do not stock or sell my narcolepsy medications, making me feel as though my bag full of American-derived pills are only difference between my everything and my unraveling.

But after three months of life in East Africa, I have finally decided to slough off this hollow branding of a fearless journalist in exchange for a new response to the question, “aren’t you afraid?” A response that is honest and more importantly, brave.

My response is: Yes, I am afraid. I am always afraid; I cannot change that.

But instead of succumbing to the palpable anxiety of a possible return into my darkness, I am choosing something different.

I am choosing to live bravely with my chronic illness.

For me, being brave is to take calculated risks; to move to East Africa, pursue a dream and to create a life that is bigger than my own. It is to plan well, pack light and hope for the best. It is to recognize your fears and ask for help when you need it. But most importantly, it is to be lionhearted and courageous in the face of what life has given me.

It is to be brave despite and because of your chronic illness.

*  *  *  *  *

Katie G. Nelson is an American journalist and photographer covering human rights, health and aid accountability issues in East Africa. She is headquartered in Nairobi, Kenya. You can connect with her via social media or email. And if you’re in Nairobi sometime soon, make sure to drop her a line.

Email: katiegracenelson@gmail.com

Twitter: https://twitter.com/katiegnelson

Instagram: https://instagram.com/katiegracenelson/

{ 7 comments… read them below or add one }

Laura August 26, 2015 at 2:33 pm

So inspiring! Thank you for sharing this. I recently relocated for work–just a few hours away, not anywhere nearly as far as Katie! But I can sympathize with the distress at leaving my medical support network and upending the routines that had come to work well for me to manage my condition. Honestly, it was terrifying. There have been some hiccups, but a few months in, I’m managing pretty well, and being able to embrace some big changes has been invigorating. Thanks, Katie, for your example, not of fearlessness, but of carrying on despite your fears!

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Alexis August 26, 2015 at 7:22 pm

Sometimes it feels like a curse to be a person with big dreams AND chronic illness, doesn’t it? But choosing to do what you’re doing with a medical disadvantage is the definition of bravery!
I have narcolepsy as well, and chose to live in South East Asia for over 2 years. I know all too well that feeling of being untethered from a treatment plan, and the medical team you’ve spent years cultivating. During my time there I wasn’t taking my typical medication (as it was not available) but I managed to make it work with extra attention to a nutrient dense/grain-free diet, exercise, as well as alternative holistic therapies. I hope whatever aspect of your treatment plan you’ve been forced to abandon, can be replaced with a good support system and lots of self love and acceptance. Be well and have an amazing journey!

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Dorothylou Sands August 27, 2015 at 8:43 am

I can imagine what it must be like working in Kenya with narcolepsy. I had a friend who was a missionary/physical therapist from her early seventies until she was almost 90. If there had not been and uprising she might have stayed there longer. She made a difference in many peoples lives. I am 81 and have had narcolepsy since I was 12 years old. Many of the things I did I would not have tried if I had realized how serious it was. I was almost 30 before I went to a doctor who put a name to my sleepiness.

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Jennifer Slodysko August 27, 2015 at 6:34 pm

“But despite the almost indescribable change in my life – managed by a powerful medication regimen and strict sleep schedule – I still remain chained – albeit loosely – to a profound and paralyzing fear that I will lose everything again.”

This is such an amazing quote! It says so much! I am acutely aware of the things I’m able to do day to day that I wasn’t able to do prior to being diagnosed with narcolepsy. Because the possibility of returning to a disabled and debilitating state is very real, I am extremely grateful for even the smallest of victories while learning to mange my illnes.

Thank you for sharing your story, and congratulations to you for following your heart!

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Robyn Madgwick September 3, 2015 at 11:30 pm

This is one person’s account of her life living with Narcolepsy.
I live with Narcolepsy. It is debilitating and, as it is so far not widely known to exist, can be seen as laziness or depression. I did not have it diagnosed until after marrying Allan .. when he encouraged me to seek an answer for the non-ability to stay awake when I was not tired, and not being able to drive anywhere as I kept becoming overcome with sleepiness sometimes 5 minutes into a trip or even to drive around the corner. Falling asleep while speaking with someone, not being able to focus on what they were saying. Making it necessary to apologize for being so rude when it happened.
On my first visit to my Neurologist in Rooty Hill Sydney he asked me what I thought was a strange question, until it dawned on me that it actually made sense! “Do you feel yourself becoming sleepy during the day .. when you’re not tired?” Until then I had thought that these two things were the same thing. With Narcolepsy .. not so! And so I was awakened .. so to speak .. to the reality of Narcolepsy. Two lab sleep tests later the diagnosis was confirmed.
Narcolepsy cannot be cured .. only the symptoms can be treated. My Dad struggles with similar symptoms .. unfortunately he is not able to travel to Sydney at least 3 times for help. The local Neurologist is not knowledgeable of the illness, nor has any access to sleep labs. So he may never know if life could be brighter for him. Robyn Madgwick​

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Amy September 7, 2015 at 4:10 pm

Wow you are an inspiration. Thank you for sharing this story

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Anne Nduati September 8, 2015 at 6:48 pm

Waoh thanks for sharing your story.its good that you are in Kenya my country and you have seen the challenges that we have on medication and the way the society handle people living with narcolepsy.
Im a single mum of a 14 year old daughter living with narcolepsy which she was diagnosed when she was 6 years and she was in a very bad condition of even wanting to commit suicide due to stigmatization and its when i started the narcolepsy awareness in Kenya where by i do school awareness,media and society awareness and still looking for sponsors to push us ahead.
I press on to see that we raise this awareness the whole of Kenya and Africa where it is considered to be witchcraft or curse and most of them are isolated in the society.
We now have a team of 78 people PLWN and still reaching more.
You are not alone,never feel alone,we welcome you to Narcolepsy Kenya cz we are one family!

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