I meet my first person with Narcolepsy.
My head jerks forward. I fight the sleepiness but my head drops anyway. The cab driver wakes me up to tell me we have arrived at the Denver airport. I smile and thank him.
My head feels surrounded by a thick layer of fog. I follow the crowd and wait in line. I usually feel this disconnected in the morning. Cognitive lapse. I try to walk through security with my sneakers on. Oops.
My weekend was life altering in Denver. The experience of meeting other people that struggle the same way, was invigorating. I had the chance to ask all the questions I could think of. I was actually instructed by one of my new friends to do so. My mind initially went blank. That’s OK! I tell them without fear of judgement.
And now a Public Service Announcement with my new friend Julie Flygare!
We had commonalities in traits/ behaviours that for the longest time I attributed to just being part of me. Or that I wasn’t trying my hardest/ best.
Organizational issues, time management, loss of time, and relationship coping strategies.
The most important for me was Sunday evening. I asked Sharon if passion or work that your passionate about is the key to success? It feels that way.. But then you burn yourself out and you have to give up those things you love. That struck home.
I was asked what’s my dream? I answered quickly. To be a contributing member of society. I shared my story with as many people as I could. Some of these people hold incredible jobs. Others no longer are able to work.
Talking about my struggles with clay and how that has shaped my view on self-care. My art was warmly received. The intention was not on selling but just being myself. Authentic Ciro. Listening, caring, and contributing.
I was excited to bring my experience at Vancouver Island University to the Conference and show how art and university support can radically transform the quality of life for people with this condition.
I could not have attended this conference without the love the support I receive at VIU. I have found professors that believe, challenge, and work with me. People who suffer with Narcolepsy often slip into isolation and depression, and lose their sense of community. Even though physically I have been unable to attend school this semester, Professor Leaf offered me an option to keep me connected. I am participating via blog by interviewing Vancouver Island artisans and participating in bi-weekly critique. A scholastic innovation for sure.
Currently, I am working on my first podcast series. I still have some audio clipping to do yet, but I am hopeful it will get finished in the new year. I felt like I needed some closure on my trip to Denver before I could move on. Thank you to those that shared their feelings with me about my last post. That support is crucial to my positive momentum moving ahead.
Why do people buy handmade? I went to Denver pondering this question. My best answer thus far is for the humanity of it. My customers buy my wares for the stories. They are responding to an inner-self confidence. Not a trait I have always had. I think of my life as a narrative. Life for me is a struggle daily. The creativity comes from that push and pull.
My best thinking still comes late at night.. but I am starting my days off writing in the mornings. Taking my doctors suggestions. Trying to be a wakeful member of the morning community. Fighting the sleepiness til I finish this blog.
I would like to end with a short story of one potter. Sit back and relax.. enjoy! (Run time 9:06)
Reblogged this on Merging Function and Beauty: CiroCapri84 and commented:
I meet my first person with Narcolepsy!
Ciro! Love your work and the blog. Don’t undervalue your contribution in your art and blogging. I attempt to be a “productive member of society” and while I do my best to educate those around me about N, I do not have the reach or broad audience that you have or can gain through your work and art. I wish I could reach out more but between work, taking care of my disabled wife,kids and grandkids there’s simply not much of me left to contribute to our movement.
So I for one would like to thank you for your sacrifice of NOT being just another” productive member of society” lol More power to you and people like Julie and all the other Narcoleptics out there who have the courage to step outside the norm and (at the risk of sounding clichéd) follow your dreams!
– fellow Narcoleptic and alleged member of society
Thank you Chris so much.. Smiling cheek to cheek and a glimmer in my eye.
Thank you for sharing our N[art] Circo. I am already making big plans for next year.
Great! I would love to hear about big plans! Keeps the creativity flowing. I would like to do the t-.shirt design.. Move from the traditional to something.. That feels handmade.
Cool blog and wonderful post, Ciro! I am sooo excited to follow your progress. You are incredibly gifted!
So glad to have met you and proud to call you my friend. For me, before narcolepsy, I didn’t mind spending my days doing things I wasn’t passionate about, it was no big deal, so I sat in the lazy river and enjoyed the view of my life passing me by. Now, there’s a huge difference. Doing things I love is like body-surfing in a huge wave – its wild, slightly out of control but exhilarating. Doing things I’m NOT passionate about is like fighting an undertow, gasping for air. So, narcolepsy brought me closer to my artistic side and for that, I’m thankful. It’s not always easy, but its worthwhile.