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.

The Answer is YOU

On a wet and miserable evening this past Fall, I sat behind the wheel of my car, desperate for warmth and rest after a very long day. I peered irritably through the watery glare of my windshield at the car I’d been forced to follow for the last few blocks. I sighed with impatience.

“Just get out of my way already!”

As I slowed to a stop at the red light, I saw this:

fullsizerender

The license plate had my name on it and it was screaming in all caps:

THE PERSON HOLDING YOU BACK IS YOU.

I quickly grabbed my phone and took a picture of this random piece of Universe wizardry.

Last week, months after this picture was taken, I was brought back to the truth of that moment. I spent four days in a workshop about reconciliation where we were taught that before we can reconcile with others, we must learn to reconcile with ourselves.

Reconcile: An act of reconciling, as when former enemies agree to an amicable truce. (dictionary.com)

Going into the workshop, I wondered if I would be able to reconcile with lupus, this mysterious, invisible invader that I’ve personified into an ever-present, formidable foe. I was quickly reminded that the factual events of our lives (like getting lupus) cannot be changed, but we can change how we react to those events.

At the workshop, they talked about the reactions that we have “practiced” throughout our lives. These reactions have become so instinctual that they start to define who we are, when in fact, they hold us back from being who we truly are. They broke it down into 13 reactions:

  1. “What About Me” Syndrome
  2. Dishonesty
  3. Dread, Worry, and Fear
  4. Critical: Fault Finder
  5. Blaming and Nurturing Resentment
  6. Anger, Rage, Aggression
  7. Intolerance and Impatience
  8. Addiction to Being Right
  9. Have to be in Control – “My Way or the Highway”
  10. Poor Me, Martyr, Victim
  11. Isolate and Withdraw
  12. Explanation
  13. Excuses for Everything – “I can’t do it”

(Credit: Returning to Spirit)

For me, #3 and #11 are my top two recurring reactions, although I can say I’ve done every single one at some point in my life. I also know that my top two reactions have been at the root of all the major flares I’ve had in the last 15 years.

“When we are no longer able to change a situation, we are challenged to change ourselves.” – Victor Frankl

To be clear, I’m not advocating for a pollyanna view of our lupus troubles, only that trying to be self aware of our reactive behaviour is a way to decrease emotional and mental stress, which is a major lupus trigger.

So, in the end, the car turned off and I was able to complete my speedy mission towards warmth and rest. And really, I think that’s what we all want:

A clear path towards something good. 

The last person that should be standing in your way is you.

NOTE: The broader scope of the workshop was about reconciliation with Canada’s Indigenous People. If you are interested, here is a CBC radio segment that addresses self-reconciliation and how it fits into this important issue.

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.

Face Forward Turns 7

Excerpt from Blurry Face & the Impending Victory of the Battle of the Brain:pc1902332Just before my master keeper gently hurried me off to the ER that August Long Weekend, I sat on my couch in my beautiful character apartment with my computer on my lap, changing my profile picture on my facebook page.  I was completely unaware of what would happen next, that I would almost completely disconnect with my working mind and brain and body… and yet, looking back, somehow, some way, I did know.  Mind buzzing, I chose to change my profile pic to one that my master keeper had taken of me climbing the mountain stairs that led to the Seoul Tower in Korea.  I’m blurry because I’m running up the stairs in a silly, fatigued stupor, it’s night, the path is dark and it looks like there is much farther to go.  I wrote a caption underneath, “A journey of a thousand miles begins with a single step.  See you at the top!”  I finish it off with a happy face and changed my facebook status to this: “He who has health, has hope. And he who has hope, has everything.”  I then put on my best pyjamas, wrapped myself in my best shawl, put on my red and blue monkey socks (because they were funny and I knew that everyone would see my socks at the hospital, so why not make everyone smile?) and announced that I was ready to go.  It was like I knew I was going to be in the hospital for a while, that I knew something big was going to happen, that whatever it was it was going to be the biggest challenge yet…

A month and a half later, I started this blog.

Exactly seven years have passed and I am still amazed that somehow, while in the throes of brain inflammation-induced psychosis, I not only knew I was about to face something life altering, but I also knew I would conquer it. Amidst all the suffering, it was a beautiful gift, this access to a powerful, confident inner voice that wanted to be heard.

Writing in this blog has helped transform my perception of who I am, my disease, and the kind of life I want to live. It uncovered this magical online platform for healing and connection. I now know that I needed to share my story in order to fully accept what was happening to me.

Terminology note: If you were wondering about the term “keeper” in my quoted text, I stopped calling my loved ones that a few years ago. I can recruit people to help me accomplish my vision of wellness, but at the end of the day, I am my own keeper. I am the CEO of my health.

To begin Face Forward’s 7th year on a positive note, here are my top 7 wellness victories:

  1. I can sleep lying down! (no more chest tissue inflammation)
  2. I’m down to one medication and it’s NOT chemo or Evil P (prednisone).
  3. My rheumatologist sees me every twelve months vs. every two weeks.
  4. I left my FT job, for a flexible, PT position that allowed me to rest if I needed to.
  5. Five years after I did #4, I left that PT job to pursue my true passion.
  6. I ran two 10 K races – I used to struggle with walking one block.
  7. I haven’t been hospitalized since this blog was started.

It hasn’t all been victories and trust me, there have been times when I’ve felt completely paralyzed with fear and anxiety. In fact, the last few months, I’ve been feeling really disengaged and unmotivated when it comes to my self-care. I am starting to feel the consequences and yet, I am unmoved. I’ve been trying to make sense of it on my own, but after weeks of frustration and negative self-talk, I think I’m going to try to figure it out here – with you. Part of the reason why I continue to write is because I think it’s important to be candid about every part of chronic illness, especially how it effects us mentally. More to come on that later…

For now, I will say happy 7 years to this weird, little blog that was born out of chaos, but remains a steadying reminder of miles traveled and hard won. “The top” is in every step, over and over again, everyday of this lupus life.

Thanks for travelling with me. I’m glad you’re here.