I have a magnet on my refrigerator that says:
“Creativity is not a talent. It’s a way of operating.” – John Cleese
It’s my reminder that, with the right attitude, each and every struggle I face is manageable. But I forget. I fall into old patterns of Woe is Me and Nothing Ever Changes and My Butt Looks Ginormous in These Jeans. So I’m expanding on this thought by sharing with you this awesome list of 21 Ways to Unlock Creative Genius (courtesy of Entrepreneur). I’ve stolen six (though all apply) and added some thoughts on improving daily operations when you live with a chronic illness like lupus.
- “Be a Copycat – Build on the Classics.” Whether you’re newly diagnosed or you’ve been living with chronic illness for years, find a mentor who you think is living life well. Here are a few people I follow, to name a few: Sara, Amanda, Tiffany, and Marla.
- “Pick the Worst Idea – Not All Risks are Bad. I recently took a big risk. I joined OrangeTheory Fitness (because the best way to go from couch potato to fit is to over-do it, right?). Well, I learned the hard way how not to do it. But then I spoke with my BFF, my doctor, his nurse, and trainers at OTF. And now that I know the best way for me to approach this one-hour intense workout, I’m six workouts in and feeling awesome (it’s pretty cool to feel sore because you exercised, not just because you exist!).
- “Ask Three People – New Perspectives Bring New Approaches.” Finish this sentence: OMG I HATE MY CHRONIC ILLNESS BECAUSE _____. Shout the first thing that pops out of your head. Now, find three people you trust. And ask them what they’d do to minimize the impact of the problem you identified.
- Look Outside Your Industry – Learn What Others Can Teach. Do you normally follow patient-centered blogs? Read up on physician perspectives. Die hard yogi? Read up on running. Agnostic? Check the news to see what the Pope has been up to. You never know what you can glean from seeking out new perspectives.
- Reset Goals – What Do You Really Want? The goals I set in my 20s look far different from those I am working toward in this my 39th year. Chronic illness is a big reason why. And in many ways, it’s such a blessing. Back in the day, my need to achieve was so great that I never enjoyed anything. If I was making breakfast, I was thinking about dinner. If I achieved something, my thoughts would be taken over by 1) fears of my accomplishment getting taken away, and 2) wondering incessantly about what was next. My slow down may have been forced, but I’m far better about living in the moment. It makes me a better friend, wife, mother, and writer. I’d love it if my old body could meet this new mind of mine … but I’d probably just go back to overdoing and overachieving. (My last big dose of prednisone and it’s crazy-energy surge are evidence of that!)
- Start Over – Scrap Everything. What’s not working for you? Start small. Just last night I tripped for the hundredth time over a laundry basket that frequently lives at the foot of our bed. The path between said laundry basket and my dog’s giant bed is not big enough to maneuver in the dark. It only took me three years to figure it out that I could just move it (further evidence that I’m not exactly the brightest bulb…).
Chronic illnesses like lupus shine a light on your life in ways you can’t expect. But if you keep your head about you, if you look at your life like a business or project, if you decide your creativity is endless, you’ll find ways to live better, live smarter, and live healthier – despite the diagnosis on your medical chart.
I’m just one person. But my ego is big enough to speak on behalf of the 50 MILLION Americans suffering from autoimmune disease. So here goes: We’re sick of seeing doctors. We’re sick of writing our blogs. We’re sick of being advocates. We’re sick of being sick. And so are the people who love us.
We Need a Goal
A wise man once taught me about the Big Hairy Audacious Goal. I think our community needs a BHAG: Get us healthy and kick us the heck out of our overtaxed health care system.
If we cured autoimmune disease tomorrow, that’s $100 BILLION of direct health care costs wiped away. And that’s likely a conservative estimate. The $100 BILLION figure is based on the National Institute of Health (NIH)’s study on the 24 autoimmune diseases for which good epidemiology studies were available. As one who is stuck in lupus limbo, my investments don’t count toward those costs. And neither do my friend Racquel’s, who is now disabled due to a rare autoimmune condition that doctors are just now beginning to recognize and study. She’s in her 30s raising four kids and running a small nonprofit organization. And every month her meds cost more than most people earn in a month.
We’re Making Headway
- Last month, advocates from around the country descended on Washington for a special Congressional briefing on Capitol Hill. There they presented a new lupus research plan to guide the nation’s scientific community toward a cure! Lupus Colorado’s Executive Director Inez Robinson attended, along with our partners in the Alliance for Lupus Research and the Lupus Research Institute. The new National Institutes of Health (NIH) Action Plan for Lupus Research presents a comprehensive roadmap that builds on decades of NIH research efforts, yielding a wealth of new information toward improving understanding of lupus.
- Just this week, a possible trigger for lupus was identified, thanks to research funded by Lupus Colorado’s partner Lupus Research Institute (LRI).
- Other research from 2016 is indicating that only 20% of lupus is due to genetics. And there’s evidence that lupus patients have a unique microbiome, or bacterial makeup in their gut.
- There’s lupus research funding available.
- Personalized treatment of autoimmune disease is on the horizon.
Kick Us Out with a Cure
We’re ready. And you can help. Supporting lupus research is a win for us all. Since lupus is a systemic disease (meaning it messes with pretty much every system of the body you learned about in middle school), the more we know about it, the better off we’ll be to treat a plethora of diseases. In the autoimmune disease realm alone, there are 80 defined diseases. And an increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increased knowledge.
You can help by supporting organizations like Lupus Colorado and the Lupus Research Institute. Join this BHAG and kick us out!
1. A “sick” friend. If you’re blessed with a diagnosis, then by garsh, you need to find a friend with something similar. Only your sick friend will understand the uncomfortable feeling of everyone on staff at your pharmacy reaching for your prescriptions without needing to ask your name. When your sick friend says, dang, that sucks, you know she gets it. Being in a constant state of sickness steals your rationality. It takes a sick friend to call BS, say, when you’re constantly looking on the bright side. Your sick friend is the one who says, it’s BS that you feel like this, and it’s okay for you to say so. (Note this sick friend will also call you on any over-the-top pity parties or irrational dropping off the face of the earth.)
2. A creative outlet. Find what makes your heart sing. Maybe it’s knitting. Maybe it’s coloring in your adult coloring book. Maybe it’s using your imagination to find ways to make the crap that frustrates you most, better. And now please—do not give me the song and dance about “not being creative.” Just because your high school art teacher didn’t marvel at your genius doesn’t mean you can’t live a creative life. My favorite definition of creativity is from Bill Moyers (as quoted by Brainpickings): “Creativity is piercing the mundane to find the marvelous.” So what if your creative outlet is organizing your sock drawer. If it feels marvelous to you, then it surely is.
3. A health advocate. My primary care provider has gone to bat with insurance. She’s held my hand while I cried. She’s comforted other patients by telling my story of things we’ve found together that have made me feel better. Recently attended a gastrointestinal conference and was told about a probiotic strain that was good for IBS-C (one of my many diagnoses). She stood in Whole Foods for 30 minutes looking at every brand of yogurt strain to find one that contained this particular strain—then told me about it straight away! (Thanks, McKenzie!)
4. A basic trust in the universe. Or, a healthy existentialist attitude. Whether you believe the world is in constant motion to bring you to your highest and best—or if you believe the world is indifferent to you so it’s on your shoulders to try to make the most of any situation—the comfort gained from leaning inward toward your essence is immeasurable.
5. Child’s pose. When everything else fails, and you’re not sure about anything, get down on your knees and put your head to the ground. If this is too painful, and sometimes it is for me, try a supported version. This is medicine I use daily. And it works. No matter how angry or sad or frustrated or overwhelmed I feel before, I feel immensely better after spending time in this yoga pose of surrender. I suspect you might, too.
Pain is inevitable. Suffering is optional.
I have three sources of energy. Sleep is not one of them. I pretend it is by monitoring all aspects of my slumber, trying different bedtimes and wake times and room temperatures and routines, diets and sleep apnea treatments and light therapies and doctors, but here’s the sum of what I’ve learned: It doesn’t matter. I’m still chronically tired.
I feel rested in three hour increments. It doesn’t matter what I do during those three hours: Somewhere between 150 to 210 minutes after my last bout of sleep, I’m exhausted.
My Sources of Energy
• Source 1: Adrenaline. Lately my adrenaline rushes come as a reactionary response to negative stimuli. Usually a deadline—as simple as an article that’s due or the refrigerator is devoid of anything fresh. My favorite (ha) is the Shame Deadline. Maybe you’ve experienced it, too: the laundry in the washer is beginning to stink; your child cries when you stuff her feet in her too small athletic shoes; you haven’t left the house in 3.5 days.
• Source 2: Sugar. I’m in a constant struggle of managing blood sugar and managing a stomach that hates most food that enters it (thanks, IBS). Veggies or protein; sugar or fat, it matters not: I can feel hungry and crash, I can feel satiated and crash, I can eat greens and crash, I can eat dairy or chicken breasts or tofu or legumes and crash; I can eat Reeses Peanut Butter cups or the gluten free almond donut served at my favorite coffee shop and crash. Can you guess which one gives me the most energy, fast? I’m fully aware that eating sugar and carbs will spike my blood sugar. But I’m crashing no matter what I eat. Might as well ride a momentary high.
• Source 3: Caffeine. Oh, how I love thee. Without you, I wouldn’t get my daughter’s lunch ready or get her dressed on time or ever comb her hair. I never leave my house except for the search for your glorious head rush. You hold my eyes open, as if little toothpicks have been jammed between my eyelids. I might as well be asleep, for all the cognitive ability I have in those shaky moments where you let me forgo a nap, but you get me through the day. Thank you.
I know so many of you will argue—correctly—that I’ll feel poorly as long as I ride these highs. I’m sure you’re right. But unless you’ve been forced to live in three hour increments, and unless you go to the doctor every three months to make sure your organs haven’t decided to maim you, and unless you’re going to take over my life long enough for me to completely wean my body off the only things that keep me going, then this is how life shall be for me. And until this mess is resolved, you can take my caffeine when you pry it from my cold dead hands.