Face Forward Spotlight: Jessica Kundapur

I’ve met a lot of incredible people since I started this blogging journey in 2009. Their stories not only motivated and inspired me, but their advice and support helped me heal, both in body and mind.

Today marks the beginning of Face Forward’s “spotlight” series, which will feature the lupus heroes and advocates that I’ve met in this strange and wonderful online world. The formula is simple:

1 awesome human + 6 questions

Why? Because sharing our stories is part of how we face forward and thrive. There are 5 million people in the world living with  lupus and we are all connected by our shared experience. We can help each other. We don’t have to feel alone.

I would like to introduce awesome human #1: Jessica Kundapur.

Jessica

Jessica is a passionate advocate for lupus youth around the world and author of Fabulupus: How to be young, successful and fabulous (with lupus). 

How would your closest friends describe you?

My closest friends would describe me as outgoing, bubbly, positive, friendly and fun.

If you could go back in time and speak to your past self right after your lupus diagnosis, what advice would you give yourself?

 I would tell myself first to take each day at a time and not worry so much about the future. I would tell myself that you can have lupus and achieve most of your goals. Give yourself space and time to heal and be flexible – not everything has to be accomplished at once! BUT you can still ensure that you are always taking steps (even small ones) to realize your potential even though you have lupus. Finally, the last thing I would tell myself is that having lupus can actually give you a sense of freedom – you no longer have to do what others expect from you. You can chart your own course and do things your own way, even if that means taking more time, find different routes and doing the things that only you find truly meaningful and bring you alone happiness.

What is the most important thing you think a caregiver/partner of someone with lupus should know?

First of all, I would say to make sure you have your own support and that you first take care of yourself. It’s a lot harder to look after someone else if you are mentally exhausted or physical unwell. Make sure that your needs are also being met! Next I would also say to make sure expectations are clear between yourself and the person you are giving care too. If expectations are discussed in advance, you can find ways where the one with lupus can be empowered to do many things on their own while still making sure they get enough rest to allow their bodies to heal from a flare.

The mental and emotional struggles that come with lupus can be as challenging as the physical. Who/what helps you face forward when you’re feeling bogged down by the mental and emotional strain of having lupus?

First of all, the biggest help for me was actually writing Fabulupus! That was a way where I could chronicle my own journey’s failures – and successes – to help empower others. So writing definitely helped to ease my mental strain of having a chronic illness. Next, I have a wonderfully supportive network including my family (especially my loving husband and a mother who always listens to me when I am unwell) and I have truly exceptional friends (both with lupus with and without) all over the world who give me a lot of encouragement in pursuit of my goals. I also am active about looking after my emotional health by doing calming activities like yoga and going for walks. I urge everyone with lupus to not let their feelings build up, because it can happen, as lupus can be very overwhelming with lots of negative feelings to process. Please talk to someone and get professional help if things become very severe. One of the biggest things I have learned is that there are ways to deal with the emotional strain- you are not alone and there are people who can help.

What is one positive thing that has come out of your lupus journey?

The most positive thing that has arisen out of my lupus journey is that I feel free. I have made many unconventional decisions in my life –including living in different countries (I currently live in the Netherlands), changing careers, writing a book and even how I have planned my family life. But I never feel guilty about my decisions, in fact I feel empowered and fabulous that I am living the life that I want. It seems paradoxical because I have no choice but to manage an illness, yet as a results of the illness, I am free to make decisions that truly put me first. I really don’t care what others expect me to do- I live my life so I can balance my lupus, physical well-being, emotional health with fun adventures.

 Face Forward is described as a meeting place on the journey towards balance, health, and epic adventure. Share something adventurous that you’ve always wanted to do.

I have still so many adventures and places that I want to explore! I have been lucky that I fulfilled one of my biggest dreams: and that was to write the book. My next biggest dream is to travel to Peru and see the Inca ruins of Machu Picchu.

Find out more about the book Jessica co-authored with fellow lupus warrior, Jodie Nimigon-Young at www.fabulupus.com. You can also check out my Fabulupus review here on the blog!

Your story matters! If you want to be featured in Face Forward’s Spotlight Series, email me at elena@lupusfaceforward.

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Sick is Not Weak

Shifting sharply away from the mournful, sentimental tone of traditional healthcare campaigns, the SickKids Foundation completely blew me away with their incredibly powerful new video, “VS.

Sick is not weak. Sick is fighting back.

No matter your age or illness, this video reminds us that perspective is everything and that yes, YOU ARE BRAVE. Yes, you are strong as hell and YES, tell whatever you are battling that THIS FIGHT IS ON.

Storm Chaser

A storm is brewing.  I dash out into the looming grey, raincoat in hand.  Seeds float down from the trees, swirling ’round my feet.  I kick my way through them, letting them slip into the bottom of my shoes as I stroll to my favourite card store.  The humidity warms my bare arms as I brush past patio onlookers.  If they look, I stand a little straighter.  I try to smile with my eyes.   Why not?

“The obstacle is the path.”  – Zen Proverb.  The quote pops out at me as I slowly rotate a rack of cards.  I let it pass out of my line of sight, but it lingers in my mind as I make my way home.  The storm is at my back, but I walk slowly.  

I think about how differently I would have felt about that quote a year ago.  A year ago, I wouldn’t have been able to take this walk.  A year ago, I could hardly breathe from chest inflammation.  A year ago, I had just lost my appetite and was on my way to losing 20 pounds.  I was about to reach the very edge of my tolerance for pain and fatigue and would be getting my first shot of Prednisone from an incompetent doctor.  I was a landslide.  I was about to crash down, crushing myself and all my keepers with me.  I would of looked at that quote with exhaustion and indifference.  “Yah, yah,” I would have thought, “I’m living it baby, now fuck off.”  

And now, pain-free, head full of hair, bubbling with lesser-moon-faced enthusiasm and Prednisone-reduction optimism, I nod like a self-anointed zen disciple.  I am startled by the truth of it and by my own ridiculousness.  It’s easy to be a mighty zen warrior when you’re in between wars.  

Down to 5 mg of Evil P, the lowest ever.  My butterfly rash comes out to play.  I’m a little more tired and prone to eating less, but it’s nothing I can’t fix.  And I am myself.  Truly.  I stand guard over my brain, armed with my zen proverbs and leafy green salads.  Ridiculous, indeed.

And so, the sleepy zen warrior scurries up the stairs and crosses the threshold of her hobbit hole.  Dry.  

Easterly Winds

Last night, I had the strong urge to crawl back into my warm, little hermit hole.   

Subsequently, I came across this Chinese Proverb as I paused for an internet reprieve from today’s fuzzy-socked shuffling and tea drinking:

When the winds of change blow, some people build walls and others build windmills.  

Sigh.  

Oh, wise Chinese Proverb…you’re SUCH a nag.