What it’s like to live and travel with an invisible disability

What it’s like to live and travel with an invisible disability
The view after a hike to the top of Grass Mountain in California Sunny Fitzgerald
The view after a hike to the top of Grass Mountain in California Sunny Fitzgerald
essay
Mic invites contributors and staff to share their personal stories and perspectives.

“Are you OK?” Craig asked, taking his eyes off the road just long enough to see me sitting motionless and silent next to him. When I didn’t respond, his smile faded and his forehead crumpled. “Say something.”

I could hear his words, but couldn’t convince my mouth to reply. My tongue was tingling and heavy, the left side of my face and body were numb.

I had just arrived on Kauai moments earlier. Craig and I — friends from our days spent studying abroad in Japan — had planned to catch up and explore the island. A visit to the emergency room wasn’t exactly the reunion I envisioned.

I glanced at the magazine in my hand, only to find floating, shapeless black blobs blocking most of my vision, as if I’d just been staring straight into the sun.

I couldn’t read. I couldn’t speak. I could scarcely see. I had no idea what was happening to me.

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A sharp pain pulsed through my head. I looked in Craig’s direction — though I could hardly see him through the optical orbs — and managed a nod.

I arrived at the emergency room barely able to stand or see, like slogging through fog with weights on my limbs and shades on my eyes. Craig tried to explain to the receptionist why we were there, but he wasn’t entirely sure himself. They ushered me to a bed behind a curtain and instructed me to lie down, the moments and their movements muddling together in my mind.

Signatures. Nurses. Needles.

Time ticked by, feeling eventually returned to my face and the floating spots faded from my eyes. A dull pain persisted, throbbing with each beat of my heart. I was both exhausted and anxious, as if I had concurrently completed a marathon and guzzled a gallon of coffee.

“The good news is, you didn’t have a stroke,” the doctor said when he finally returned to my bedside. “The bad news is that you have hemiplegic migraines. The symptoms mimic a stroke. And this could happen again.”

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It’s been almost 10 years since I was in Kauai and received the diagnosis of sporadic hemiplegic migraines, a rare neurological condition with debilitating symptoms that can reappear at any time — temporary paralysis, intense pain, impaired speech, numbness, mental fog, visual disturbances (called “auras”) and sensitivity to light and sound.

There is no cure. Even within the medical community, there is limited awareness and understanding of the condition — and doctors don’t agree on the best treatment. And for many years, I refused to even acknowledge I was living with it.

Even if I prepare and take every precaution, there is no guarantee symptoms won’t surface. I was fortunate to be with a friend the first time SHM struck, but I am often on the road alone. Travel is not just my passion; as a travel consultant and writer, it’s also my profession. And the thought of frolicking in foreign countries as a solo female traveler with this unpredictable condition — never knowing when I might be rendered mute and immobile — is a very real concern.

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What if SHM symptoms surface when I am in a taxi or simply walking down the street in a city where I don’t speak the language? What if my vision blurs and half my body goes numb when I am in the middle of interviewing someone in a foreign country where it is culturally and professionally unacceptable to excuse myself? What if the next time I experience SHM symptoms, it actually is a stroke and I am too far from a hospital to get proper treatment in time?

A couple of weeks ago, I was conducting interviews with some locals in northern Jordan. We arrived at our first stop — the home of a basket weaver — and had barely gotten beyond basic introductions when the black blobs started bobbing and swirling in front of my eyes. Flashing zigzags zipped back and forth while the black blobs moved like amoebas, bouncing and floating in front of me. I felt my lips and left hand start to tingle. I glanced over at a colleague seated closest to me and quietly said, “I know this is going to sound weird, but if I am unresponsive at some point soon, can you take me back to my room, lay me on the bed and give me water?”

She stared at me blankly, understandably confused. From the outside, I appeared unchanged. An SHM attack had started, and there was no way to stop it or know how long it would go on or if it would get worse. The clock was ticking — I had to give her more information while I still had control of my mouth.

I pulled off my medical bracelet, handed it to her and said, “I have a medical condition. It’s written inside this bracelet, along with my father’s number. Please call him if anything happens to me. I know this sounds crazy, but this type of migraine mimics a stroke. I am having symptoms now. Half my body is numb. My vision is blocked. I may not be able to speak or form sentences soon. And I can’t be sure if it will worsen or subside.”

“Well, what should we do?” she asked. “Should we take you to the hospital?”

“No,” I replied, unsure if that was the right answer but not seeing any other options. Even in large international hospitals, many doctors are not familiar with my condition or know how to treat it effectively. The wrong treatment can cause serious complications, and I didn’t want to take that chance. “If I am unresponsive, just take me back to my room. Hopefully it will pass.”

My senses heightened to an unbearable level. Everything was too loud, too bright, too much. The fan cycled through a maddening pattern of whir-click-stick until one of our hosts would slap it back into place, starting the cycle over again. The basket weaver described in Arabic all the intricate steps she takes to create her designs while our translator summarized, each word sounding louder than the last.

Aliaa, the basket weaver in Um Qais, shows me her craft. She insisted I watch and try it myself, but I couldn’t see much of anything. Check out my clenched hands. The gold band on my left arm is my engraved medical bracelet.
Aliaa, the basket weaver in Um Qais, shows me her craft. She insisted I watch and try it myself, but I couldn’t see much of anything. Check out my clenched hands. The gold band on my left arm is my engraved medical bracelet. Sunny Fitzgerald

I wanted to ask questions from the list I had prepared, but I couldn’t even read the writing in my notebook through the auras; I only knew my pen was touching the page. So I continued on, scribbling notes I couldn’t see and hoping my recorder was picking up clear audio while the basket weaver shared stories of her childhood and training.

I drank water. I sipped some scalding, sugar-filled tea that was served to me. I tried to breathe slow and steady.

I desperately needed to lie down in a cool, dark, quiet room. But this woman had invited us into her home, served us tea and was telling us about her life and craft. So I stayed — in a bright, hot room, perched cross-legged on floor cushions, notebook in hand, trying to appear interested and engaged while my migraine symptoms raged.

Like a news reporter watching an accident from a helicopter above the scene, I felt myself disconnect and observe the chaos below. This is what it’s like to live and travel with SHM. Confusing. Terrifying. Literally paralyzing.

I didn’t go to the hospital that day. And I miraculously made it through the interview. My symptoms eventually faded into the usual aches and exhaustion of a “post-migraine hangover,” and I continued with the remaining research after some rest that evening. But it took me several days to recover, and I will need to visit a specialist to confirm no permanent damage was done.

This one is from when I interviewed Ahmad in a small town near the Syrian border. I had an SHM attack less than 24 hours before this photo was taken (during the aforementioned interview with a basket weaver). After some food, lots of water and rest, I was able to carry on with interviews. It was a rough couple of days, but as you can see, meeting people like Ahmad make it worth it and is the reason I can’t sit at home and worry.
This one is from when I interviewed Ahmad in a small town near the Syrian border. I had an SHM attack less than 24 hours before this photo was taken (during the aforementioned interview with a basket weaver). After some food, lots of water and rest, I was able to carry on with interviews. It was a rough couple of days, but as you can see, meeting people like Ahmad make it worth it and is the reason I can’t sit at home and worry. Sunny Fitzgerald

SHM might slow me down on some days, but it won’t stop me from living this life that I love.

This is what it’s like to live and travel with SHM. Confusing. Terrifying. Literally paralyzing.

In spite of the temporary paralysis that can occur, I refuse to let fear of future attacks completely cripple me. Since my diagnosis, I have traveled to more than 20 countries and said yes to a variety of experiences — wandering otherworldly desertscapes in Wadi Rum, bicycling around Ljubljana, exploring the Galápagos Islands, cruising the streets of Cuba in a classic car and the backwaters of Kerala on a wooden houseboat. But I have also had to accept and respect that my body has limits. Sometimes I have to (however reluctantly) sit on the sidelines if I want to avoid the ER — or worse, a coma or permanent damage.

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I can still hear the words the ER doctor spoke after my first SHM attack. “I don’t know what you’ve been doing, but you need to slow down,” he warned. In a flash-paced world that urges us to go further faster, SHM reminds me to slow down, look around, feel the breeze, enjoy the scene and take it all in.

How I deal with my condition on the road

Over the many miles and a few additional trips to the ER, I’ve found ways to keep my symptoms at bay most days. Preparation and prevention are essential — this is the guide I wish someone had written for me as a resource.

Before I board a plane, I email my travel itinerary to my family and send info about SHM to guides and tour operators. I wear a medical alert bracelet with the universal medical symbol on the outside and emergency contact information engraved on the inside.

Identifying SHM triggers is crucial. For me, SHM seems to strike when I am dehydrated, famished, exhausted and/or exposed to bright lights. Wearing sunglasses and staying hydrated, well-fed and well-rested is imperative. I am serious about avoiding an attack, but I can still see the humor in my SHM-avoidant antics. While in South Africa, my travel companions nicknamed me “Squirrel” after witnessing me nibble and sip on a steady supply of snacks and water while on safari. Better a safe squirrel than an ER-bound one.