Simmy Khetpal

I give myself permission to experience loneliness in this isolation, and I challenge myself to even come to prefer it over the company of others.

My family has always been just a phone call away, and the few friends that I have would take a bullet for me. Nothing is really wrong, and yet it is. 

At restaurants, I would routinely ask to sample everyone’s dish, make some unsophisticated mental notes about texture and taste, and then focus on the crux of my review: the time with my family.

Now that I am older, I can more easily understand how helpless they must have felt in not being able to find a definitive cure. They offered their emotional support throughout my medical journey and gave me the ability to try a variety of treatment options.

The more time I continue to spend in Berkeley, the less I care about censoring my experience with MG. My intention is never to make someone uncomfortable when I bring up my physical and emotional struggles but instead, to exercise my identity in a way that is liberating.

I find that sharing my own personal accounts and reading others’ give me a unique sense of liberation. Individuals on these forums want to listen to me, and they want to be heard. That is the crucial difference between the dialogue that often takes place in real life versus online. The support from the community space made me see that my struggles and experiences with MG are valid.

My lips remained sealed just as they had when I had a breathing tube. This time, I was able to answer but couldn’t find the words to capture how hurtful it was to have medical professionals routinely keep the truth from me.

Now, I wish I had remained positive throughout the years, although it is difficult when a physical condition erodes the emotional capacity to do so. I’m grateful for my family and team of doctors. They all fought for me to have more than just a normal life but rather, an extraordinary one.

Although I still struggle to accept my appearance, I’ve learned to stop imagining a hypothetical world in which my body had not been abused by years of prednisone use because that is simply not the reality. I appreciate how far I’ve come with learning to adapt to my ever-changing height and weight.

But I am not someone to look up to simply because of my experience with myasthenia gravis. In fact, focusing on that diminishes my other accomplishments.