I had never heard of Myasthenia Gravis until my friend, Maria Fernanda, was diagnosed with this chronic illness in 2013. We met in 2008 while we both worked towards obtaining degrees in translation and interpretation. We bonded as translation geeks over weekly happy hour sessions, through discussions about our terrible love lives, our mutual love of dogs and trips to the beach. As our lives began to lead us in different paths (I haven’t physically seen her since she said goodbye to me at an airport in 2012), we are still connected through WhatsApp and as traveling translators.
Nonetheless, how most of us travel and work is completely different from how she does these activities since her diagnosis. Every aspect of her life changed in the last 5 years, and somehow she still finds the strength to continually kick ass. She is a director at a university, a friend you can count on, takes every opportunity to go on a trip, and rescues dogs almost on a weekly basis. She does all of this while living with a chronic illness that debilitates her to the point of double vision and necessary 12-hour naps. Maria Fernanda keeps on fighting and beating it every single day. I’m an awe of everything that she has accomplished and hope that by the end of this interview, you’ll admire her as much as I do and learn something about how it’s like to translate and travel with Myasthenia Gravis.
How did you become a translator and what is your current job?
After doing “community interpreting” for a few years, I realized it was something I enjoyed and that I was actually good at, so I decided to pursue a Translation and Interpretation degree. As soon as the very first class was over I knew I’d made the right choice. I loved it. I still do.
I’m currently working as the Director of the Translation and Interpretation Department at Yachay Tech University, a public research university in Ecuador.
Does your job require traveling?
It did, at first. Since Yachay Tech sought to be a world-class university, most of the academic authorities we recruited came from English-speaking countries and for a while I was the only interpreter/translator on campus. I had to attend meetings in different cities so it did require traveling, although it was only inside Ecuador. Most of it was by car, which made it extremely exhausting for me. Now all those authorities are gone so I no longer need to travel.
Can you explain a misconception of your professional role that you have encountered while working with others?
People think translators are a walking dictionary. They think that just because you are a translator you speak a gazillion languages and that without knowing any context you can just come up with an answer for that tedious “How do you say ____ in Spanish/English?” question. Also, that actual translation is as fast and simple as Google translate. They’ll send me documents that are 20 pages long at 9 in the morning and ask “So, do you think this can be ready by noon?” The biggest misconception overall is that people think you ARE Google.
What was the last place you traveled to and what did you most enjoy about it?
Bogotá, Colombia. It might sound strange, but what I actually enjoyed the most was the fact that the city was so cold that I never felt weak. I normally take 3-4 pills a day to “function” normally and in Bogotá I felt I could walk for hours (and I did) without feeling tired or like I needed a break to recharge my batteries. The weather was so nice to my MG that I took my 3 pills every day but only because I had to, not because I needed them. Feeling that I didn’t need my medicine, that I didn’t depend on it for the first time in 4 years and that I could enjoy my vacation without any worries was the best feeling ever.
You had a life-altering experience after you were diagnosed with Myasthenia Gravis. Can you tell us more about the illness… in layman’s terms?
MG is an autoimmune disease. Unlike a “healthy body”, in which antibodies help us fight viruses, bacteria and all sorts of diseases and infections; when you have an autoimmune disease your body attacks itself. Instead of attacking “bad cells” your antibodies start to attack the good ones by mistake, causing a series of problems. With MG, the connection between your nerves and your muscles gets interrupted, and as a result your muscles become extremely weak, preventing you from doing basic activities such as walking, going up the stairs, running, or even eating, chewing, and sometimes breathing. This muscle weakness worsens with use and improves with rest, so when you wake up in the morning after a good night of sleep you feel like you have all the energy in the world and you can actually brush your hair, get dressed, go to work and have a “normal” day, but as the hours pass that energy starts to fade and any and every physical activity becomes a struggle, so you have to rest. The medicine is good for 4-6 hours, so when you first take it you feel pretty “normal”, or even strong, and then after the 4th or 5th hour you have to take it again in order to go on.
What changed after you were diagnosed?
The question should be “What didn’t change?” My life was turned upside down. Nothing has been the same since I got sick. Learning you have a chronic illness, that there is no cure and that you will have to take medicine until the day you die changes your life, plain and simple. You must learn to know your body all over again, from scratch. I’m not able to do things I used to love doing before. The beach has always been my favorite place in the world. I can no longer go tanning all day like I used to because heat makes you weak and sick. I can’t go hiking, or swimming, or out for walks with my dog because my arms are too weak to hold on to the leash and if she pulls too hard I fall. If I go dancing, I have to dance for a little and then rest for a bit before I can dance again. And if I dare do something that demands a lot of energy (like the day I hiked to a waterfall in the jungle or when I went paragliding and rolled down the hill ‘cause I couldn’t run), I have to be 100% aware of the fact that the work my muscles do will be so hard that my body will be sore for at least a week afterwards and I won’t be able to move. But hey, no regrets.
These may all sound like “mundane” things, but it’s like you’re handed a brand-new life. You have to analyze EVERYTHING before you do it. Don’t order a steak or your jaw muscles may get weak and you won’t be able to chew. Don’t move into a two story house cause you might not be able to go up the stairs every day. Don’t drink, as alcohol is a muscle relaxant and you’ll end up falling down. If you want to travel, think where you’re going and how you will get there. Does it require hours of walking? Is it too hot there? How does transportation work? Because you can’t take the bus; you can’t put your leg up that high to reach the step and getting off the bus could be dangerous. Do you want kids? Because a normal delivery would demand too much energy and strength, which you don’t have, and if you undergo a C-section, anesthetics could potentially kill you… and if you do survive the surgery, will you ever be strong enough to hold your baby?
So yes, life changes. But then there are also good changes. You acknowledge the fact that you can end up in a hospital any given day, so you start taking better care of your body. Since you know that you will never be 100% healthy again, you start appreciating life more. You want to LIVE more. You are thankful for waking up in the morning and you want to make the most of every day, because you don’t know if the next day you’ll have the energy to get out of bed. You become more positive. You become more thankful. You stay away from people who bring you down. You learn to read other people’s energy and you avoid all negativity. You appreciate more those around you and thank them for sticking around. You learn to keep the good and get rid of the bad. You become a new and better person.
How could anesthetics potentially kill you?
Anesthesia blocks nerve transmission to avoid pain. Basically what it does is it paralyzes your muscles. When you have MG, your neuromuscular transmission is already impaired, so going under anesthesia, plus the stress of a surgical procedure, could result in MG exacerbation or crisis (i.e., life-threatening respiratory impairment), which could potentially kill you.
How does this chronic illness affect your job as a translator?
I used to be able to spend an entire day behind my computer translating without getting up, or for days without getting much sleep. When I had a lot of work, I would get 20 hours of sleep in a week. Now I just can’t do that. Now I HAVE to get rest. I HAVE to sleep or I’m simply not able to function. Now after typing for a while I have to stop, literally pull my fingers to stretch them, move my wrists around, get up and walk around for a bit and then come back to continue typing. If I don’t, my hands become numb and I’m not able to move my fingers, so I end up typing with one or two fingers total, which basically makes my job impossible. Also, if I get too tired I get double or blurry vision, which makes reading and therefore translating impossible.
On the other hand, as an interpreter, I have to check that the stage I go on to interpret has a ramp, or that the stairs have handrails so I can hold on to them and not fall down on my way up. I need to make sure my notebook is big enough so that I can take notes freely enough and prevent my hands from getting too tired too fast. I have to use pens instead of pencils, and so on.
How does the illness affect you during your travels?
Before I book any flight I have to check if I’ll be able to get some rest, whether on the plane or at the airport, for instance, with long layovers. I have to remind myself to take my medicine about an hour before boarding time, so I can be strong enough to walk to the gate and push my bags around. I need to make sure the flight attendant is around to help me put my carry-on in the overhead compartment or just avoid bringing a carry-on so that I don’t have any unnecessary extra weight on me. I have to travel light, literally. I need to double and triple check that the place I’m going is “handicap friendly”, meaning that there are ramps and handrails and not just stairs everywhere. I have to check if the hotel has an elevator so I don’t have to carry my bags up (stairs are my biggest enemy. I’ve fallen/rolled down so many times that I’m terrified of stairs.) I have to wear hats at all times so the sun doesn’t drain the little energy I have. Also, I bring extra medicine with me because I’ll need more than my usual dose to have enough energy to get through the day and do everything I want to do.
Have you ever had any issues taking medicine on domestic or international flights?
No, I’ve never had any problems with my medicine when I’ve traveled. No one’s even asked me why I bring medicine with me, but I still carry my disability ID card and a Medical Card with me at all times just in case.
Where and when is your next trip?
I’m going to Aruba in October with my best friend to celebrate my birthday. I had a relapse about 3 weeks ago and was in the hospital for a week. When I got out I decided I wanted to celebrate I’m alive and what better way than by doing my favorite thing in the world: a beach vacation.
What would you like to tell people that have never heard of Myasthenia Gravis before they read this post?
Be empathetic, but most importantly, be patient. MG is considered a “rare disease”. The disease is rare; we are not. Don’t be rude. It’s already hard enough for us to deal with this. We don’t need people looking at us like we are weird, or feeling sorry for us. Listen to us. We know our bodies. Don’t push us to do more than we can. If we say we can’t go up that hill, don’t make us go up that hill. Don’t say things like “you can do it, it’s all in your head.” It’s not. We are not lazy, we just can’t do it. And the most important advice: read. Learn. The more you learn, the more you can help. You never know when you’ll be able to identify symptoms, prevent a crisis or even save a life. There is no cure for MG, but with enough support from our loved ones the daily battle gets a little bit easier.