Writer and photographer Jennah Ferrer-Foronda describes the “thrive instinct” she developed after being hit by a mysterious autoimmune disease. Her story is one of resilience through art, beauty, and wonder. The accelerated erosion of her body sparked an insatiable wanderlust, inspiring Jennah to use her five senses to explore the globe while she can—before the disease slowly throws its opaque veil over the world around her.
You are a photographer, a dancer, a painter, a writer, a mom of a 7-year old wonder.
Your mental health gets lost in the labyrinth of check-ups, check-ins, labs, colonoscopies, spinal taps, follow-ups, and allergy tests that only conclude “there is no clear diagnosis.”
One doctor says, “your vision is deteriorating rapidly.” Another tells you what you already know and came to hear in the first place, that “you are losing your balance and especially your mobility.” Suggests pilates. Pain management.
When your right leg goes numb and you miss that third step, tumbling backwards down twelve hardwood stairs, your romantic spin to the doctor is that you were channeling Alice in Wonderland.
You hike; it’s what Angelenos do on a Saturday. Two hours later, you have something in your eye and you douse it with eyedrops, which don’t help. A nap, you just need a nap, you think. Awakening from that, your right eye can see your son telling you about his latest iPad Minecraft build. But your left eye sees nothing. You must have overheated during that hike, that’s it. It’s all you can think of as your kid is showing you his Minecraft character. You’d squint, but your other eye is blind, so that’s beside the point.
You are exhausted and ready for a nap at 9 a.m. Your pain arsenal includes heating pads, daily pain medication, ice packs, heat packs, gyrotonics, foam rollers that vibrate, massage balls covered in knobs, acupuncture. You are aging at a rate faster than people 30 years older than you who pass you on the uphill, with a chipper good morning, happy to be alive.
It could be lupus, multiple sclerosis, rheumatoid arthritis, celiac. While everyone else is busy figuring out what you are dying from, you take pictures.
Photographs to document you seeing.
You remember taking a self-portrait of your left eyeball, close-up. In black and white. It was looking dead-on into your iPhone, except it couldn’t see a thing. You will instagram this and hashtag it #artheals. Because looking at it on your feed breaks your heart. Because in that pupil, there is no light, only water. Because you are someone who tells everyone that you just do not cry.
No one knows this. But the photograph does well: 111 likes and eight comments.
Because falling downstairs isn’t enough, your leg will once again go numb and you will miss a quarter-inch step in a parking garage on your way to buy sheet music: Mad World, Michael Andrews, and Gary Jules. You will not purchase sheet music that day, nor will you remember the physical pain of falling, but the sound of your ankle crunching as you land on it, folding, will haunt you and the thought of wearing flip flops will terrorize you years later.
Everyone will ask if your ankle is broken. When you tell them no, the response is akin to telling someone that your pet hamster has died. “A sprain? That’s worse. It hurts like hell and takes A Long Time to heal.” And: “God, it’s almost better to have a clean break.”
After 13 weeks of a crutch, the boot and a wheelchair, you will receive a message at Costco:
Why hobble when you can drive a motorized shopping cart?
You are en route to the pharmacy for Oxycodone, but without having to further cripple your hips by overcompensating on the good leg—you are the happiest you’ve been all summer. Waiting in line, you take out your phone, hit Safari and cruise for plane tickets.
If your vision is on its way out and you’ll be walking like a 90 year old within a few years, you will take your savings and see parts of the world you haven’t seen and you will photograph beauty until it’s time to sell your camera.
2015 was a year of nine countries and seven states. Cuba, Bali, France, Panama, Peru …
Nothing makes you forget about inflammation and pain like layovers, customs, and hustling from one end of an airport to the other end, three miles away. You are moving. You are doing. You are Be~ing.
However, your autoimmune disease lives on. You are in Costa Rica at a dance teacher training, where you WILL get certified to learn and teach movement to those with chronic pain and nebulous illnesses or GO HOME.
That plane from LAX to San Jose International, the tiny one with four seats per row and that car ride through a river and toward the ocean will wreck you.
You will last one out of three classes on the first day, the muscles in your feet feel like sharp rocks. You will collapse and lie down on a Balinese bed during class as your classmates do something simple: standing and rotating their hips. You are unable and you are so sick of living like this. For two out of the seven days, you will have traveled 3,000 miles to be immobile in bed, numb from the Oxycodone and pain. You realize midweek that you are in the midst of experiencing and witnessing yourself failing. And no amount of “fuel the mind, the body will follow!” has a chance in hell.
You still have hope. If only you can pull it together and teach a class on self-expression through movement, with personalized hand-drawn art cards for your classmates and a sexy modified yoga set for those who have trouble standing. You got this. You will take this dance technique and make it your own so that you can dance yourself into existence and help others do the same.
But you never teach that class. The notecards with quotes and doodles will remain in your handbag months later as the paper edges wither and collect crumbs and pen marks and oil stains.
With humility, you return to pilates. Before your diagnosis you were on that five out of seven year journey of returning to your pre-pregnancy body and catapulting leaps off of the springboard on the Reformer. Today, there is no standing, no hanging off of the ballet barre to stretch your back, because not only are the bottoms of your feet cutting into you like sharp razors, but the tops of your feet have shrunk two inches, bundled in cramping nerve fibers, and your hands and arms dissolve into the numbness of your disease. You cannot stand. Some days, you take the hit of the cancellation fee or contemplate calling an Uber to drive you to pilates.
Some days you feel like a rag doll in the cradle of the pilates Cadillac. Other days, you’re a limp noodle and standing is just not an option.
In your New York days, you had massage therapists dangle on ropes and walk on your back and twist you into you contortionist nirvana after being shaitsu’d into raw meat.
Today, touch hurts. The knots in that first layer of fascia under your left foot make your right shoulder pissed off. You scream, you give up and you follow instructions: to let your physical therapist’s finger melt into layers of scar tissue and with your mind—or might—you mentally move stuckness with energy.
You will drop every F, S, A, B and D bomb to the person who is hurting you, even though she really is helping you. Because if you feel like this lying down, you honestly do not know how you can possibly continue to live like this.
Until one day, a 10-minute walk without your feet bunching up into nails or your psoas gripping is that little victory that a few days later, becomes 20 minutes.
Some days you are shocked to be able to (and to want to) do calf raises and pliés on a vibrating power plate, stretching on the ballet barre and doing pilates lying down on the Reformer. And other days, the weather fires up inflammation and stiffness, but not so much where you can no longer snuggle with your kid playing verbal Mad Libs before it’s time for his bedtime.
Your son amazes you—growing limbs, no pain, agility, happiness, no pain. You are grateful that hugs no longer hurt.
And you wake up. Somewhere in time you forgot that you’re married to this body and this relationship. And that you forgot to listen to, or didn’t hear: this will take time, this hurts me, thank you—this makes me happy. Please be patient with me.
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