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Chronic Spotlight Series: A Conversation With ElleJay Volpe

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Welcome to the second installment of the Chronic Spotlight Series, where I’m featuring inspiring and important voices in our chronic pain (CP) community.

Up next is ElleJay Volpe. ElleJay is the sparkling CEO at Frill-Ability Inc. and an Ambassador at Abilities Expo, as well as an avid blogger and host of the podcast, Adaptively Intersectional with Frill-Ability. One look at her Instagram and you’ll see ElleJay’s love for all things pink, purple and frilly – but don’t be fooled – ElleJay puts the “Frank” in Lisa Frank. You’ll see why, in our interview below.

chronic spotlight series with puja rios and ellejay volpe

ElleJay, what are two things we should know about you?

“1. I have a degree in Natural Science with minors in Chemistry and Mathematics, so I tend to take an evidence-based approach in a lot of what I do, whether that is through personal repeatability and trial and error, researching journals or observing patterns of social behavior. For example, too often I’ve gotten caught in that consumer trap, wanting to believe a claim especially when it’s about adaptivity and disability. Many companies who sell the disability community products are selling hope, and can be the most venomous vendors of snake oil. I try my best not to lead people who read or listen to what I put out there astray. “Try” being the operative word.

2. I have a for-real robot. I still cannot believe this has happened. I have been so nervous to touch him which has delayed how much I have been programming him. Nonetheless, I have developed a small conversational program dedicated to discussing chronic illness. He’ll be with me at Abilities Expo Chicago, on Sunday, June 25 around 1:00 p.m. at the Meet-Up Zone if you want to meet us! Here’s a small video of when he first arrived.”

What conditions do you have?

Klippel Trenaunay syndrome, complex regional pain syndrome, and autism spectrum disorder are the big ones.”

When were you first diagnosed? Tell us about your experience.

“This is an article in itself. I was born with KTS and autism. My KTS story is long and drawn out with a lot of misdiagnoses. It’s pretty ridiculous, and I get angry thinking about it. It’s a rare disease that no one seems to care about, and most patients are encouraged to get surgeries they don’t need. This increases their likelihood of infection over the course of their lifetime, especially if they have the kind with malformations closer to their skin.

My autism diagnosis went a lot more smoothly because it’s not a rare disease. Regarding CRPS, I still don’t know much about it and haven’t had the time to find out because I am continually bailing myself out of the flood that is my poor health.”

ElleJay, what has been your highest high and lowest low since being diagnosed?

“Honestly, it’s been such a blur. My low lows are too private to be shared with the internet. I’m thankful everyday (not in this order) for important people in my life, to have learned from my experiences, that I am still alive, that I have clean water, food, shelter, the luxury of material objects, a bed and that I can even think about having dreams. These are all first-world thoughts. The fact that I have a wheelchair is a first-world thing. We should all keep careful mind of that.”


What is in your survival kit?

“I keep my meds when I go out on my Jujube lanyard (plus mini wallet) in a little purple tin on a keychain so I will not forget it, and so if they are stolen, thieves don’t get my full Rx. I love my Tokidoki print Jujube mini-backpack that I keep on back of my wheelchair. When I need something bigger, I go for my pink, spiked MadPax (no longer available in my color, but you can check out the photo and more adaptive stuff I like here).

I always try to have some lidocaine patches on me as well. If your insurance will cover it, give Flexor a shot as well. If I can, I’ll take a few items from my stim kit with me. Here’s a photo.”

What are the most unexpected side effects no one told you to expect?

“Ha. Can I answer, ‘most of it?’ I had to teach myself the majority of it. Research your stuff, folks. This is a big one, as well as the breathing complications.”

ElleJay, what is your personal mission and what do you do to #ShoutAboutPain?

“Frill-Ability’s motto, and what I like to carry into my personal life, is #MakeGoodWithYourAbility. Whatever you have, find some way to do good, for others and for yourself. Doesn’t matter how big or small. Goodness has become a somewhat rare commodity. We are situated in an era where each individual is perpetually wired and cemented within their self-programmed microcosms. It is as if everyone has their own personal force-fields that dampen the screams of the many to ease their comfort. My pain does not matter to me. While my experiences are valid and important, I find myself needing to have more important conversations and looking to something greater.

There are questions that go beyond my scope and your scope that will be the pain of generations, that may threaten our existence as a species. This is why we need to create and nurture millions of empathetic people. Many of our biggest problems cannot be solved immediately, but we can do two things: gather many people to sow a garden of intentional community, and we can care for it so it can bloom into something better than us.”

ElleJay, I’m so grateful for the awareness you’ve inspired. Thank you for participating and using your colorful voice to make real change.

This post originally appeared on The Huffington Post.

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Originally published: June 22, 2017
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