Full of Hot Air

AboutPartnershipsHealth
Written By gina hessburg
Image by Isabel Subtil

Image by Isabel Subtil

Side effects of being on a high dose of prednisone: amongst other things, sharp hunger pains and the inability to sleep, as experienced by me at 3:19AM this morning.

What happened?

On May 21st, I was at the University of Minnesota eye clinic having my third optic neuritis attack. Optic neuritis is an autoimmune response and inflammation of the optic nerve on your brain. Too many recurrences and the nerve will not recover, meaning all sight will eventually be lost. My current mission is to recover from this attack and figure out what is causing it to prevent this from happening again. For three years, I have been working with multiple clinics and hospitals. We do not have an answer yet.

A hero companion emerges...

In enters Rafael, my (non-sexual) novelty toy blow-up doll. While deep cleaning in isolation I found Rafael in a dresser drawer. I had purchased him a few years ago to scare friends on a cabin trip and then would take him on other adventures like to Isla Mujeres for my 40th birthday. While organizing the drawer, I pulled him out, filled him with air, and he again came to life. He has since been an inspiration, an outlet, and a way for me to feel connected to people while we cannot be physically next to each other. For the past several weeks, I've documented our pandemic isolation relationship and its ups and downs via my Instagram account, @TheNextProjectIsMe.

Whoa.

Shitty, right? But we're turning lemons into lemonade. A friend in Costa Rica messaged me saying he wanted a Rafael book. This inspired me to run the idea by Tracie Eder, VP of New Business and Strategy at Little & Company. I asked Traci what she thought if I self-produced a coffee table book about Rafael to sell with the first $5 from each book going to optic neuritis awareness and research, and the rest covering material costs and medical bills. At this point, I was not looking for help, just an opinion. Traci told me she had to hang up the phone to call Joe Cecere, President of Little & Company, because they were going to produce this book with me. Within an hour I had a calendar invite for a kick-off meeting with a full team including Mike Schacherer, VP Creative Director at Little & Company, who has told me he is excited to work with Rafael because he found him charming and ridiculous, in all the right ways.

I have made the commitment of $5 from the sale of each book going towards optic neuritis awareness and research, but because the project officially kicked off less than three weeks ago I am still doing research to identify how it will be used and and or donated. I will update this blog and followers as soon as I have that decision confirmed.

What's next?

The book is in round one with the design team at Little & Company. In the last three weeks, the vendors listed below have stepped in to help make the book going to market a reality. This is not just about selling a book. This is about optic neuritis awareness. This is about giving me something good to focus on while I am in recovery. I wake up every day ecstatic that I get to produce my content, for once, with my dream team. That is the most healing gift of all.

Tonight ( Friday 6/19) Rafael and I will be on Minnesota’s PBS-TPT Channel 2 program Almanac to talk about how our relationship came to be. Note, this is a news program, so should major current events change, the segment may be bumped to the following Friday at 7:00 PM on Channel 2. I will also post a link of the segment when available.

More to come. Please check out Rafael on @TheNextProjectIsMe. To get updates about the book, subscribe to my newsletter here.

Thanks for the read. I hope, despite all the crazy in the world, you can stop and find some peace and joy.

The Dream Team:

Please check out Rafael on @TheNextProjectIsMe.

gina hessburg
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