Imagine that you are walking down the street when your thoughts suddenly become sluggish and thick like feet walking in a muddy creek bed. Then you realize you can’t feel much of your body and the edges of your vision are beginning to slide into a gray fog ever so slowly. You take a breath to calm yourself, but something else, something other than your own mind hijacks your thoughts and an icy panic runs up your spine, while the world around you begins to tilt and turn like a twisted, tormenting theme park ride.
This is what the beginning of a seizure feels like, at least some seizures for some people, like myself. For me this is normal. While I can’t say you ever quite get used to the confusion, the fear, the pain (both mental and physical) and the hijacking of both your mind and your body with varying levels of awareness, I can tell you that it is a struggle that I am well equipped. I have lived with seizures all of my life and have seizures nearly every week (sometimes more often), even at 29.
There are many limitations to having epilepsy or other seizure disorders; however, the challenges and the limitations take a different turn when one moves to a foreign country. My husband and I have been living in China for 2 years now. China is a wonderfully vast country full of cultural idiosyncrasies, interesting foods, an old culture, a complicated people, amazingly beautiful lands, frustrations, joys, wonders and even mysteries. I love living here, but it is often a minefield rife with dangers for someone like me – someone with seizures.
The triggers, my mines
One of the most common triggers (things that cause seizures in those who have seizure disorders) is flashing lights. This is generally called photosensitive seizures, meaning you are sensitive to light and, in this case to light patterns. So I have to be extremely cautious walking around popular squares or areas of cities at twilight and nighttime; because if there is one thing China likes it is anything that will get your attention. Rapidly changing and moving
images on huge LED screens liter these common areas and cause me a plethora of issues. These can range from a severe headache to twitching/spasms to even a full seizure all dependent on how much light directly catches my eyes and the duration of exposure. Adding to these mines, there are often string lights or runner lights that are flashing around doors or signs for shops, hotels, stores, restaurants, and other misc businesses that would like to have flashy neon adverts.
Another trigger for me is crowds and lots of chaotic noises. I know, I know, most people ask me, “Then why in the world did you choose to move to China of all places”?
es it is true that China is often perceived as being the motherland of chaotic crowds and the cacophony of noise they release, but the simple answer is that it’s not like that everyday everywhere. I came from a small area with a low population, but even there I sometimes had to worry about crowds like in crowded restaurants or special sales at superstores. Or even in day to day living at busy universities. You can’t escape crowds if you want to be a part of a society at large and not live on a farm in isolation.
So I adapted and developed a strong fighting spirit along with a keen sense of observation. With a world so full of dangers in the environment around you and inside you, at all times you must be sure of where the safe areas are, where the exits are, and possible aids (i.e. something to drink, dark places, quiet places) and learn a great deal of physical discipline. This is how I walk through China in my everyday life. I step around crowds or focus on counting my steps so my brain is occupied and, therefore, less able to take in bad stimuli if I have to go through crowds. I wear headphones a lot so that outside sound is muffled or my music drowns it out.
Epilepsy Stigmas in China
You might ask, “Could you ask for help?” The answer in America and other countries is a hesitant “yes,” I could, for the most part; however here in the East there is a rather strong stigma that pushes those with seizure disorders to be silenced. I learned very quickly through experience and reading other people’s stories online that I must keep this a secret or risk some fallout. The stigma can range from fear of it somehow being a contagion that could be inflicted on other people—which elicits fear and sometimes verbal violence—to being a symptom of some kind of darker psychological disorder hinting at possible dangers or violence everyone around.
Other stigmas from less developed areas revolve around seizures being some kind of trick or punishment from an external source such as spirits, karma, or even bad luck. Thus, if you are being punished by some higher power, then you have done something to warrant this and should be given a wide berth.
Madness, possession, contagious disease, cosmic punishment, psychologically disturbed, irreparable human, mistake, broken, reject, and subhuman are many of the labels thrust upon people with seizures in this society. They are often told they should never marry nor should they hold a job. And of course, children are out of the question.
People diagnosed with epilepsy, before marriage, are often denied marriage certificates. Often people are fired if they have a seizure at work. The person or even family members are often shunned and ignored in their own neighborhoods. If the one suffering from seizures is a child, many other parents will not allow their children to play with “those children” for fear of some sort of damage or repercussion falling on their children.
I have been lucky enough to not have anything but minor seizures out in public or make it back to my apartment in time for a larger seizure. I have to be careful of not getting overheated or overly tired, and I have to be careful about the foods I eat too as some chemicals (MSG) and foods (pork for me) can worsen or even cause seizures.
I am truly blessed because I grew up with parents that were patient and loving even in the grips of a child suffering from a disorder they didn’t understand well. However, many children and even adults here in China do not have that same level of support. Orphanages here are filled with children who have various disabilities or disorders; they are thrown away for falling short of “perfect.” Teenagers and adults are often sent away or kept in seclusion and denied even the basics of a proper education.
Recently, there was a man in Hubei who was sentenced to a life in prison after a seizure resulted in a fatal car crash while he was driving. Yes, he should NOT have been driving, that is undeniable, but he will never receive treatment, support, or good medicines in prison. This is an example of how China deals with “disruptive” disorders, they tend to put you somewhere and ignore you in hopes the problem will go away.
The Hope for Seizure Disorders in the Future
Now please don’t think that things are hopeless, because they are not. In the last 8 years, China has made some remarkable strides in trying to get more information out there about seizure disorders for public consumption and to delineate disorders and disabilities. There are disability groups and agencies that are popping up all over China and some colleges are now trying to aid students with special needs. Though, I admit the progress is slow, but it is wonderful and heading in the right direction.
I would like to end this blog about living in China with epilepsy by explaining that while life for me is limited and often more difficult than some people, I have more freedom and independence here than I did back home. Things are more closely placed here and the public transits are remarkable. Back home, we had lots of land so everything is so spread out that walking is not feasible. Public busses were unreliable and often not running, subways didn’t exist and taxis were too expensive if you can even find one. In China, I am able to go anywhere I want, when I want, and how I want. For the first time in my 29 years of life, I am able to taste what being an independent adult tastes like and this is one of many reasons I feel freer here in China than in America despite hiding my “dirty little secret.”
Note: This blog was submitted to another expat blog as a guest blog. You should definitely check out her blog, because it is awesome! I would also like to thank Amanda for her help and also the suggestion in writing this blog.