I’m a big reader, but while I was very sick with chronic migraine, I was also studying for my PhD. I had absolutely no time for recreational reading (other than blogs). These days, I have a bit more time on my hands to read for fun (I just finished John Windham’s 1957 “The Midwich Cuckoos”). I’ve also started reading books about healing your pain.
Today’s post is a summary of Lala Jackson’s “Beyond Powerful: Your chronic illness is NOT your kryptonite” (2017).
[Image source: google]
Ms Jackson starts the book with her origin story, as it were. She was diagnosed with Type 1 Diabetes as a 10-year-old and explains the medical drama that unfolded after her diagnosis. There is very little woe is me, however. As the title suggests; “It is absolutely possible to be both chronically ill and achieve amazing things” (page 11). As she reiterates, plenty of “overachieving” people “are also battling this constant force of not being well”. (p9)
[Three cheers to that!]
In describing a life lived with a chronic illness, she uses words that feel familiar: betrayed, fragile, burden, hopeless, hurdles, dive-bomb, slacker. But she also points out the strengths that our illness encourages us to adopt. We learn to prioritize, to say ‘no’, delegate, self-advocate, be assertive and courageous, and love our imperfections.
There were so many sentences that made me sit a little straighter in my chair: “even though you have days when you feel like absolute crap, you are a beacon to others fighting through the same” (11). [Which reminded me of the sentiment of a past post: “Be Someone’s Lighthouse.”] Family, friends, neighbors and colleagues, might not say it, but they’re watching how you manage. With luck, the good ones are admiring your tenacity and ignoring the social stigma that treats illness as a weakness.
She mentions the idea of how our bodies are hardwired for drama (this is me paraphrasing her now); our primitive ancestors were chased by lions, and our bodies and brains designed a fight or flight reflex to deal with the situation. Then, after it was over, our primitive fear would subside. We would go back to chillin’ around the campfire. Now, modern life feels as if the lion is always on our doorstep, never tamed or killed or left behind. Even if the stress disappears, we don’t seem to have the capacity to let go of the memory of the event. We dwell.
As such, chronic everything (fear, stress, overwhelm, illness) is our new normal.
Ms Jackson then turns her attention to more recent examples of those who have come before. Those who faced adversity, and never gave up, never “threw in the towel”. Her list of those she admires is eclectic: Oprah Winfrey, Michael Jordan, Steve Jobs, J.K. Rowling, Albert Einstein, the Wright brothers and their flying machine…
Their spirit of determination is something we can use for ourselves, she suggests, to better manage our health. Be the equivalent of a “silent ninja” or “bullish pro-wrestler”, she writes. Even when you want to scream and cry. Even when you want to throw your shoe at the people who aren’t listening (19). She laughs that we all deserve honorary medical degrees because of the old platitude ‘it takes 1,000 goes to become an expert at something’, and so by definition, we’re all experts in our own illness. (21)
Laughter is a big theme in her book. Illness slows us down, wears us down, and yet we get up day after day. Sometimes we even manage to laugh at ourselves.
By way of example, she mentions the TED talk by Maysoon Zayid; “I got 99 problems … palsy is just one“. I left the book and went to look her up online. Ms Zayid has cerebral palsy and a wicked sense of humor. She raises awareness about her condition by using it as material for her stand-up routines… which she has to sit down to deliver. It’s not an easy watch. (Her lifelong condition is the result of her botched birth at the hands of a drunk doctor. At the risk of again being labelled out of touch due to ableism (read more here), I found Ms Zayid incredibly inspirational:
[Video (14 mins): I got 99 problems… palsy is just one | Maysoon Zayid – YouTube]
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All this leads me to Lala Jackson’s notion of ‘quirkiness’ as a superpower. She speaks of a friend who can imitate the beep-beep of Lala’s insulin pump and admires Lala as for being “bionic”. When restaurant staff grow irritated by her questions regarding ingredients, she reminds them how much more inconvenient an anaphylactic episode would be.
“Embrace your weirdness”, Lala writes, it’s cool to stand outside the crowd (37).
[I’m trying hard to get into the yay-me vibe of the book that Ms Jackson is creating. What can I get pumped about? Maybe the strange buzz that comes from watching people’s faces contort when I tell them my hemiplegic migraine can paralyze my legs and I have to crawl across the floor to get to the bathroom. Or how I broke 3 teeth during my worst ever attack. The bulk of life lived with chronic migraine however is harder to share. The vomiting and brain-fog and being bedbound for days, weeks, years… that doesn’t feel so ‘cool’…]
One idea that I really liked is in the middle of Chapter 6. She mentions a friend who lives with her own illness and runs a Facebook page with her local friends. Each time she knows she has to go in for surgery, she pre-plans a list of things that she’s going to need done while she’s in hospital for the week. Her friends and family then log on and put their name down against activities (drop off dinner / pick up kids / walk dogs etc). When she goes into hospital for her treatment, she knows everyone and everything is taken care of.
[It seems very clever and efficient – I’m guilty of leaving almost everything to my husband and parents. Then again – my migraines aren’t exactly open to pre-planning!]
But I do like that the sick lady recognizes that asking for, and receiving help, is not a weakness. It is sensible and powerful to delegate what you cannot do.
Overall, this book is a mixture of Ms Jackson’s life stories, celebrity tales, and “typical” patient stories. It’s a powerful reminder that illness is a leveler: it doesn’t care if you’re rich, famous or ‘normal’. Sick is sick, and the desire to rise above it is a universal trait.
[I’m still conscious though that there is rarely anything truly “typical” about our journeys. Each of you is you-nique. Even if we share a similar diagnosis, the details (triggers, symptoms, solutions) are often very different, as are the living-life circumstances we muddle through.]
Ms Jackson ends by reminding readers that chronic tends to mean forever, and that can leave you feeling a bit glum. But if you can turn your attention outwards and help others, you begin to feel fearless and empowered.
[Three cheers for that as well!]
Take care taking care, Linda x
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