At my college, there were a lot of stairs, and just one elevator. I watched the poor mortals who had to go up and down endless stairs, sweating, getting tired, dragging themselves. I had the key to the elevator. Whenever I’ve gone to a party or a music festival, I’ve never had to wait in line. No pushing or jostling, no risk of beverage spillage or ruining my makeup. Stylish, isn’t it? It’s because I’m a diva.
Multiple sclerosis is most often diagnosed in people between 20 and 50 years old. I was diagnosed when I was about 14. Since my diagnosis I’ve had relapses (caused by inflammation of the scars in the brain tissue), some new scars, a lot of pulse therapies, medical visits, boring, unpleasant and painful examinations, and memorable trips and falls.
Because of my MS, I have had to relearn many things we learned as toddlers. I’ve had to learn everything from how to pick up a spoon without dropping the food on it to walking. I’ve also had to learn how to be dependent again (it’s no picnic to depend on someone else 24/7, even to go to the toilet). Then, I had to learn my limits and how independent I could manage to be. From taking away some movements of mine and forcing me to relearn basic things of my daily routine, multiple sclerosis showed me that it’s okay to ask for help, prioritize myself, and expect to be treated well. In that way, multiple sclerosis made me a diva.
What characterizes a diva in my mind?
• Divas don’t run or sweat.
• Divas don’t carry plastic bags or shopping bags.
• Divas live in special dwellings, with special rooms, that suit their needs or fancies.
• Divas don’t dart off to answer the phone, or undertake anything without planning.
The truth is that I didn’t necessarily become a diva by choice. My body simply can’t respond as quickly as my mind. And there’s no way to change that, it is simply my body’s rhythm now. It is exactly this slower rhythm that taught me the art of being a diva. Some people think that my rhythm is caused by laziness, pure and simple. Others think my rhythm is charming. Either way, it is how my body is, full of independent needs and wishes I can’t always control.
A couple of years before I realized this, if someone told me to run so that I wouldn’t be late, or miss the bus, I’d say: I can’t, I have multiple sclerosis. They would stare at me with surprise and fear, take one step backward, or ask if I knew where I was going (after all, most people think MS makes you unaware of your actions). That made me angry, made me flip my lid.
Now, instead of blaming or commiserating myself from not doing some things, I simply don’t do that, period. Same with divas, they do whatever they want. That’s quite true that from divas it’s expected sophisticated make-up, full of high heels and finery. I can hardly walk alone, let alone in high heels. But being a diva is on the inside, it doesn’t come from your footwear.
MS (or being a diva) has never hindered my studies, my work, my college degree, my bachelor’s degree, advanced degree and whatever lies ahead. It has never prevented me from going to any party I’d like to (and to some I wouldn’t), from drinking a cold beer in the summer or a glass of wine in the winter (in moderation). It also has not kept me kept me from dating or marriage.
Most people figure that people suffering from a disease are unattractive, untidy, scrubby, miserable and grumpy. I do apologize for not fitting this stereotype.
There are certain days and situations now where I run out of time and patience because of my multiple sclerosis. So when people forget I have MS, and ask me to do things that push my limits, I prioritize myself. I simply reply, “I can’t, I’m a diva.”
Interested in seeing the Portuguese version of Living Like You (Vivendo como você)? Visit:http://esclerosemultipla.novartis.com.br/vivendo-como-voce/ for more great content.