Beyond Powerful: Your Chronic Illness is Not Your Kryptonite

Beyond Powerful: Your Chronic Illness is Not Your Kryptonite

by Lala Jackson

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Product Details

ISBN-13: 9781683503811
Publisher: Morgan James Publishing
Publication date: 09/19/2017
Pages: 130
Product dimensions: 4.80(w) x 7.80(h) x 0.40(d)

About the Author

Lala Jackson has been navigating the world of being an over-achieving go-getter who lives with chronic disease since she was 10 years old and diagnosed with autoimmune type 1 diabetes. She uses two machines – an insulin pump and a continuous glucose monitor, both of which are attached to her body 24/7 – to keep herself alive. However, chronic disease doesn’t run her life. She loves adventures, always has more than a few projects in the works, and doesn’t know how to do much of anything halfway.

When not speaking or writing, Lala lives in Brooklyn, does work for a non-profit with a mission to cure type 1 diabetes, and loves traveling to literally anywhere with a swimmable beach, whipping up a paleo concoction, attempting to not fall over in yoga, throwing paint on a canvas, or flat out sleeping. Because knowing when to rest is everything.

She grew up between Hawaii and Washington State, graduated from the University of Miami in Florida with a communications degree, has a heart for all things multicultural, and is obsessed with recognizing all of us who are beyond powerful – because chasing dreams while living with chronic disease is no small task. She’s also a Gryffindor. For more information, visit lalajackson.com.



For speaking and writing inquiries, or for any other questions, email at lala@lalajackson.com.

Read an Excerpt

CHAPTER 1

SUPERPOWER #1 VOICE

My mom is one of the kindest humans I know. In my entire lifetime, we've gotten in four arguments – two about my health, one about dating, and one about figuring out what I was going to do after I got my denial letter from the Peace Corps. It had sent me on a several months-long downward spiral during which I wanted to do literally nothing else with my life. In each, she never yelled. She does the far scarier thing of getting really quiet and saying she's disappointed. Mom kung fu.

When I was getting into my later teenage years and starting to navigate the world of doctors, insurance, and pharmacies on my own, I would often have to tap mom into the game once I felt like I had exhausted my options. Inevitably, the next time I would go to the pharmacy to pick up the medicine they were previously showing as not covered by insurance and therefore $500+ for the month, I would say my name and they would respond with, "RIGHT! Right. Yes, we have it right here. So sorry. So sorry about that. Nope, just $20. So sorry," and I would get SUPER curious about what the hell happened when my mom called.

I found out one day in high school back home in Honolulu. My school was on a block system, so we only had three classes a day for two hours each. Our senior year, every now and then we'd get a block free. If it was the first block or the last block, we could come late or leave early, but if it was the middle block, we weren't supposed to leave campus. It just so happened that on one of these occasions when I had a middle block, I needed to run to the store to get batteries for my insulin pump, which was about to die. As soon as I mentioned this to the front office staff, they let me leave without another question asked. When I got back to the office to check in, I joked around about having gone on a joy ride and they didn't question me. A 17-year-old with a car on a school day allowed to leave for the first time and they were acting like they trusted me entirely – something was not right. I pressed a bit more to try to figure out why they let me go.

"Girl, we are on STRICT instructions to let you do what you need for your diabetes."

"What? From who?"

"Your mom. She was very clear. VERY clear. She's tough, yea?"

I laughed, but in a way it's true – as kind as she is, my mom is my fierce protector and will not accept no as an answer when that no is interfering with my well-being. It's not fierce protector in a screaming, yelling way. It is always a firm, well-reasoned, "you WILL help us with this" statement. It becomes impossible to say no to her.

She once wrote a 100-page scientifically-researched document and sent a copy to my insurance company, my medical provider, my medical technology company, and the state's insurance commissioner, with whom she had made friends, to get a new piece of blood sugar monitoring technology covered by my insurance. She is tireless. And it taught me something key – in many cases, if you get creative, are willing to work, know your stuff, and refuse to accept no as an answer, you can usually get to a yes. I think that's a really special thing we get to learn through the process of navigating life with a chronic disease.

Creators, founders, authors, CEOs – they all have to wade through a sea of negative answers before they get to a yes. The key is that they keep going. In all of those situations, they could decide to give up, they could decide to accept the no. We know about people like Steve Jobs, Oprah Winfrey, the Wright brothers, Albert Einstein, Fred Astaire, Bill Gates, Lucille Ball, Michael Jordan, and J.K. Rowling because they failed first but kept going. I could fill books with a list of names of people who had to be their own advocates when no one else believed they deserved what they were asking for – a break, a job, a spot on a team, a publishing deal. But there's something key here – every single one of these people had the option to throw in the towel. It is only through sheer grit and determination that they decided not to, that they decided to keep going.

When it is your life on the line, your health, your wellbeing, you don't have the option to give up. You must be your own advocate. It's tiring. It makes you want to scream and cry and throw your shoe at the people who just aren't getting the fact that you truly do need what you're asking for. But in a way, isn't that special? You can navigate medical bureaucracy like a silent ninja (or a bullish prowrestler, when need be), always getting to your end goal, whatever that end goal is. Think of how much else that can be applied to.

You have learned to not accept no as an answer because you had to learn. You have the resilience of which others dream. I know it doesn't always feel like it, but think about this - if you can get the physician's assistant to give you sample medication because you know you can't afford the cost of your new prescription right now, you can convince your business idol to look at your business proposal. If you can write a compelling enough letter to the trial administrators to get them to consider you for a limited-spot clinical trial, you can write a compelling enough introduction to get that editor to consider your book idea. If you can run the science experiment that is your body, day in, day out, considering all of the data and carefully measuring it against your own historical data to see how a new nutrition and exercise routine is affecting your health, you can write the code for that iPhone app you've been mulling over.

By living with this disease, you have learned how to be your own advocate with your doctors, nurses, teachers, school administrators, boss, advisors, parents, and friends. You know how to stick up for yourself. You know what you need and what you're capable of. When that perfect storm of being sure about what you know and being willing to keep fighting happens, you can often get to the yes you require.

Over the past decade, the technology used to care for T1D has drastically improved. The most game-changing piece of equipment has been the continuous glucose monitor, generally known as a CGM, which is a little sensor that sits right under your skin and takes a blood sugar level reading every five minutes. It provides an almost overwhelming amount of data, but is the biggest key to having the insight needed to help make my body function as close to a non-diabetic's as possible. For a very long time, this system was cost-prohibitive for me and it continues to be for a lot of people, but I was finally able to pursue getting it in April of 2016 with new insurance that would cover it at 100 percent. I cried when I found that out. Big tears, ugly face cried. My blood sugar levels had never acted as they were "supposed" to and I was often listed as "non-compliant" by my medical teams, despite my trying incredibly hard to get my blood sugar levels in a better range. Having this tool would be life-changing for me. It was a big deal.

I called the medical technology company, all my insurance information in hand and ready to go, the day I qualified for coverage. A few days later, they told me they were ready to ship out my order for the low, low price of $864. I explained to them that my insurance covered the system at 100 percent and to please run everything through again.

Over the course of the next two months, I had almost daily communication with my insurance company, the medical technology company, and my work's benefits manager. The medical technology company was completely over me – they thought I was not only wrong about my insurance coverage, but I got the impression they thought I was also irritating and pushy. I made a massive point of being as pleasant as possible to everyone involved even though I knew that someone was messing up. I ended up having to track down the codes needed to run everything through correctly and acting as a liaison between the companies, translating what forms needed to be filled out and by whom, tracking conversations that should have been tracked in their systems, and reiterating what ICD-10 and CPT codes were needed to make everything go through correctly. In June, when everything finally went through the system, the medical technology company representative seemed genuinely surprised that I was right about all of the coverage after all. I've found that surprise is usually the reaction to anyone actually knowing their stuff. Within the chronic disease-having population, I really don't think it's that rare. We have to know it.

If I hadn't fought for so long and chosen to inform myself about every step of the process, I never would have gotten this tool that has now drastically changed how I can take care of myself. If I had gotten embarrassed about calling so much, if I had assumed that maybe I was wrong, if I hadn't been so persistent, I either would not have gotten the needed tool, or I would have been almost a thousand dollars out of pocket, plus the extra few hundred dollars I'd need every month to keep my supplies stocked.

I cried more than a few times throughout this process. I hated that the only thing standing in my way were people who weren't listening, people who weren't taking the time to look into the details. It's the same way I used to cry when I had to leave the pharmacy without the medication I needed to live because I couldn't figure out how to get my insurance to be run through correctly. They weren't sad tears. They were pissed. They came from overwhelm and frustration. But as I've practiced being my own advocate, over and over again, I've gotten more used to fighting through the frustrations, fighting through the seemingly endless answers of 'no' until I get to a 'yes.'

It doesn't matter where we learn that resilience - it can be taken from and applied to so many situations. Maybe you've had a well-meaning family member or friend tell you that if you just tried this new raw-food, cinnamon tablet, boiled okra, whatever-the-hell-else concoction that they heard about from their little sister's boss's cousin, you would feel better and be able to participate in more social gatherings (you know, since it's not nice that you've been missing so many of them). Infuriating, huh?

By sticking up for yourself in those situations, by either being very clear about why they have it wrong or by choosing to walk away and not let it bother you, you are practicing being your own advocate. You are choosing to do what you need to do for yourself, for your own mental and physical health, rather than letting someone else tell you what you should or shouldn't be doing.

Knowing that, what other situations do you think you could be applying this bad-ass-ness to?

It's a common joke in our community that anyone diagnosed with a chronic disease should also receive an honorary medical and research doctorate, because the level of knowledge it requires is incomparable. In Malcolm Gladwell's book Outliers, he posits that it takes 10,000 hours of practice to become an expert in any subject. One year has 8,760 hours. Hm. And how many years have you been living with your chronic disease? If you don't consider yourself an expert in anything, maybe it's time to reconsider and use your expertise to your advantage.

Ariana Huffington, a highly-educated media mogul, business woman, writer, and politician who holds a degree in economics, is currently best known for her advocacy and research for what? Something she has NO academic or professional expertise in. Sleep.

In 2007, Ariana regularly got about three to four hours of sleep a night. After a whirl-wind college tour with her daughter, where she would regularly stay awake most of the night to work, then spend her days touring campuses, she returned to her home in New York and collapsed on the floor. She ended up breaking her cheekbone, waking up in a pool of her own blood, and requiring stitches. She thought there must be some drastic underlying condition but at the end of months of diagnostics, it was determined. She was suffering from burnout and sleep deprivation.

First, she became an expert. She chose to dive into the study of what supported her health and well-being and, by doing so, became a rallying cry for self-care from an unlikely source. She was a woman who worked 24/7 building a business empire and all of a sudden her message was simple, but went against what so many of the 'sleep when you die' business moguls practiced – instead, rest. Her need to support her own health created her rise to expert-status in a field in which she has no technical training or formal study. She needed to be an expert for herself, so she became an expert. Then after becoming an expert, she became an advocate; not only for herself, but for people across the world who were running themselves into the ground with work. In the offices of The Huffington Post, there are hammocks in the newsroom and bookable nap rooms, as well as breathing and meditation classes. No longer is her experience with sleep deprivation only about her. Like we all can do, she took something that she dealt with, learned about it, shared what she learned, stood up for herself, became an advocate for herself, and became an advocate for others.

Obviously Ariana was already a known figure – by the time she released Thrive in 2015 and The Sleep Revolution in 2016, she had already been a best-selling author for four decades. She attended Cambridge University, has run for political office, and her website The Huffington Post sold to AOL in 2011 for more than $300 million. She had a few applicable skills before her health taught her a few more. But something she certainly was not an expert in was balance, so the fact that her entire public platform is based upon it now is interesting. She dove into a new subject, was willing to work to learn everything she could about it, unequivocally knows her stuff about everything to do with rest, balance, and well-being in the workplace, refuses to accept anything other than sleep being a vital part of our well-being, and she is willing to fight to spread that message.

It's the same for all of us, really.

Kris Carr, who released Crazy Sexy Cancer Tips in 2007 after her own cancer diagnosis, has taken a similar path of diagnosis to student to expert to advocate. Kris was an actress and photographer (and self-proclaimed party girl) living in New York City when a yoga class didn't provide her usual relief from what she thought was a hangover. After visiting the doctor, she found out that her liver was covered in tumors – she had cancer.

She began writing and filming about her journey while doing everything within her power to do cancer her way. She didn't want to be a science experiment and she didn't feel as though Western medicine's approach of chemotherapy and radiation was right for her, so she became her own advocate. She started doing research on other ways to help herself, other ways to thrive despite and with her cancer.

I know you know what that feels like. There is an odd mixture of dread and meek empowerment that enters your body when you know you're about to tell a trained medical professional that you're not going to take their advice. That you're going to approach this your own way.

If the reactions have been anything like what I've received, you could've gotten anything from a blank stare and silence for a truly uncomfortable amount of time to a sheer dismissal. I'd been given and prescribed the same medication countless times over the course of YEARS before having a doctor finally accept that I just was not going to take it (and thank everything, because that medication was later proved to be quite toxic). It is hard enough telling anyone you're going to take a holistic approach to cancer now – in the early 2000s, I can only imagine that Kris was forced to deal with a fair amount of ridicule. But she stood her ground, continued to research what she felt was right for her, found a care team who respected her decisions, and now has relationships with doctors who work with her to find non-invasive methods to care for her whole mind and body, not just the parts with cancer.

She got creative (she even wore cowboy boots into her first MRI), was willing to work, delving through mountains of information to find answers that worked for her, was steadfast in what she knew, has continued to be stubborn in the kindest, rainbow-unicorn way (I promise that will make sense if you start poking around her YouTube videos - she is delightful), refuses to do this whole cancer thing in any way but her own, and from it all, has created an empire of wellness, helping millions of people not only with cancer, but who were just looking for ways to feel a bit better. She's also become buddies with Oprah and continues to kick cancer's giant backside.

The resilience of learning to be your own advocate is a very real thing. I know that living with chronic disease takes up a lot of your energy, but what do you want to be doing with the rest of it? How can you take this self-advocacy super power and apply it to what you love? You are downright overqualified, honestly. You already know health. Take it, reapply it. You already know how.

(Continues…)


Excerpted from "Beyond Powerful"
by .
Copyright © 2017 Pamela "Lala" Jackson.
Excerpted by permission of Morgan James Publishing.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Table of Contents

Acknowledgements,
Introduction: How Did I Get Here?,
Let's Talk Science & Stats,
Superpower #1: Voice,
Superpower #2: Vision,
Superpower #3: Imperfection,
Superpower #4: Purpose,
Superpower #5: Quirkiness,
Superpower #6: Grace,
Superpower #7: Leadership,
Thank You,
About the Author,

Interviews

  • Readers learn how living with chronic illness has made them powerful
  • Provides encouragement and relatability from an author living daily with chronic illness
  • Offers inspiration via tales from other overachievers living with chronic disease
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