Hope /hōp/

Noun – a feeling of expectation and desire for a certain thing to happen.

My own definition: the most powerful, yet wicked motivation.

People have different perspectives on hope; some see it in a positive light and use it as comfort and coping mechanism, while others panic and impulsively eliminate their high expectations with a fear of failure. Like many other concepts in the world, it’s hard to categorize hope as merely “black or white”. Speaking from experience with both extremes, both strategies have helped me, and equally destroyed me.

I’ve worked with many different doctors – from different parts of the world, with different resources and ideas, from different demographics, with varying experience. With all these different variables, one thing remains stagnant – they all present with a tingle of hope and encouragement for their patients, that they will get cured under certain treatments and get most, if not all, pigmentation back. Unlike most kids, I looked forward to going to the doctor, because it meant new possible treatments – a reason to keep fighting. Entering each doctor’s office meant they would tell me that there was another breakthrough with steroids or topical creams or sometimes a new oral medicine – something that would make any diseased kid jump out of their seat with excitement. A chance for the pain and exhaustion to be over, meaning they could return to a normal, average childhood.

But nothing is quite that easy, is it? We got a recommendation from a family member that going gluten-free made her white spots go away for as long as she stayed on the. So without question, we stopped buying bread, switched to vegetable pasta, cut any unneeded gluten out of my meals for upwards of three months. Nothing happened. During my excimer laser treatments, I spent plenty of my time talking to nurses about progress in other patients, who would see little brown dots forming on their skin every few weeks and were still making progress. Fortunately, I saw a few dots too, but nothing substantial in comparison to the other patients. This pattern continued with lightbox treatments and our other prevention methods. I had habituated this behavior so much, that when the Indian government approved its first official vitiligo cure, I laughed. My hope had destroyed me, as my standards were so low for new medication that I could hardly address it as the “cure” it was branded as. Honestly, I barely even followed my medicine schedule until my dad got stricter about it.

The point I’m trying to make is, treatments work differently for everybody. Different bodies react to different treatments, and while there have been great breakthroughs for this condition, there is no official cure. Hope is a good thing to have, because it is a motivation tactic and personally, it gave me willpower to stay on schedule with my medications and treatments. However, excessive hope can lead to a sense of helplessness and one might feel as if they have no control over their cures and should just give up. My hopes got so high that I got sucked into a vicious cycle of pessimism and lost sight of the beauty in this condition. Neither of these extremes are the answer.

Balance is key.