Picture taken for Project Sleep's Narcolepsy: Not Alone Campaign

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Yesterday, I tried to get out of bed.. I could not. My body felt like the pit of despair. Quickly, I ran through my reasons to be grateful. I read the poem my Nan gave me. It’s posted at the head of my bed.

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Suddenly, my eyes became cloudy. Tears running down my cheeks. The feeling of hope and determination surfaces. I put my headphones on and listen to my morning music.. I message Kendall and my mum to tell them what’s going on. I send them my crying face photo. I talked about my feelings and then my day started like any other day.

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In case your asking yourself why was I crying? Why in heavens sakes am I talking about it?

I have only cried on two other occasions in 6 years. The last time I was at my intervention (yes, like you see on TV). The time before that was after my best friend died.

What was significant? I felt a whole spectrum of emotion in 5 minutes.

Pain>Despair>Fear>Sad>
Gratitude>Hope>
Determination>Peace.

If that is not a gnarly reason to have a cry… I give up. Kendall said it was an emotional miracle.

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Friday, I embarked on a trip solo. Off to share my experience with other people that struggle with the same stigmas and chronic condition. I am one of 20 artists from around the world that are presenting at the N[art] exhibition. The art show is part of the annual Narcolepsy Network conference.

Reflecting with my partner about what has been working for me over the last few years.. We came up with this: I am honest. I don’t keep secrets. I can be vulnerable with a room of people. I take naps.
I have the loving support of my family, friends, mentors, and partner. I have art in my life. Art happens daily. I am of service to others. I have jobs that I absolutely love.

On the really hard days Gabriel (a 17 year old minimally verbal autistic boy) that I am fortunate to work with gives me the best reason to hop out of bed. I tell myself.. If I can just be there for him, it will be a good day.
That service is something that I cherish.

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I also love the support at VIU (Vancouver Island University). I have found professors that believe, challenge, and work with me. They offer me alternatives that I am able to be successful at. For example traveling to interview artisans for my blog. That was fundamental for my self-esteem lately. Thank you Professor Leaf.

I told professor Leaf (directed study mentor) a few weeks back when he was challenging my thinking in regards to Ceramics. I said there are three things at 29 that I am certain about… 1.Love for Kendall 2. Love for Gabriel 3. Passion for Ceramics.

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I am going to Denver to share my experience and passion with others. Learn about my condition from top specialists. Oh ya, and present some work. Speak about what has been successful for me to people who will be attending university or are currently enrolled in university.

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10 years ago a professor from Vermont Technical College wrote an article about my story and how a paper I had wrote inspired her to learn more (Thank you Susan Youngwood).
I have been rereading her article.. Over and over. What the doctor said came true. My narcolepsy symptoms have changed over time. My coping strategies are not effective anymore. Losing my memory, not sleeping, and bouts of painful digestive problems. All very new to me. I don’t feel alone in Denver. I meet my first person with narcolepsy.. That’s not me!

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Narcolepsy: Not Alone BC, Canada

 

 

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Comments

  1. What honesty and heart in how you express what you are dealing with, and what optimism! And you are teaching me about narcolepsy, and about perseverance, and about gratitude, and about ACTION. Thanks Ciro, hope you are having the time of your life whereever you are. Dianne

  2. Alexandria says:

    Way to make me cry, Ciro. Your strength is inspiring.
    Gabriel: “Ciro’s room is closed.” He misses you. Love ya, man.

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