Back to Zero

In the back of my mind is an internal clock, one that tracks the time that has elapsed since my last fall. Well, it doesn’t count the exact days (it’s not that good), but it knows that my last fall was on the Fourth of July 2018, a little more than six months ago. I remember that day vividly. I was in North Carolina visiting my sister, and after watching the fireworks on TV, I retired for the night. As I was about to climb into bed, my right knee bumped into the box spring, causing me to lose my balance and crumple to the floor. I was shaken up but otherwise unhurt.

To go six months without a fall, given my advanced weakness, is a miracle in itself. But I knew my good fortune wouldn’t last, that eventually the clock would reset one of these days, in sudden and violent fashion.

That day was Thursday.

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2019 Blog Topics – Welcome Your Input

Hi everyone,

I hope everyone is having a great start to 2019!

I am planning out my content calendar for the next few months and wanted to quickly reach out and ask my readers: Are there any topics you’d like me to write about this year? Anything related to my patient experience? Random subjects that have nothing to do with disability?

Let me know! I welcome your input.

At least, as long as it’s something I want to write about…

A Pain in the Nose

For as long as I can remember, headaches have been a part of my life. I don’t know how old I was when I got my first headache, but I distinctly remember crushing, nausea-inducing sinus pain in middle school. My pediatrician at the time referred me to a headache specialist – a serious, middle-aged man with silver hair and thick glasses – who asked me in my first appointment to describe the pain. I pointed to the base of my nose, my forehead and the back of my neck. “Pretty much everywhere,” I said.

The doctor recommended an MRI to see if he could find the source of my headaches, and also to see why I couldn’t smell. Perhaps, he said, they were related. I had never heard of an MRI before but it was an excuse to miss school, so I was cool with it.

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2018: A Year in Review

2018 was a unique year in many ways. It was a year full of twists and turns, highs and lows, excitement and monotony. Considering how I started the year, to be where I am today is nothing short of a miracle.

After all, it was only 365 days ago, on December 31, 2017, that I was down on my luck. I was newly unemployed, depressed and questioning the trajectory of my life. Only three weeks before, I had made the momentous decision to quit my job as a product manager at a medical diagnostics company, unable to deal with the constant stress of a role that my heart wasn’t into. It had reached the point where I was always stressed, anxious and unable to get a good night’s sleep. What good was having a job if it was going to kill me in the process?

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What I’m Grateful for This Thanksgiving

Although my life is chaotic, with its share of frustrations and challenges, on the whole, I can’t complain.

It’s been a while since I’ve done a list, so rather than write a sentimental essay to commemorate Thanksgiving, I figure instead I’d rank everything that I’m thankful for this year. Why not?

Without further ado…

Things that give me joy

18. TV shows. Outside of sports, I never really watched a lot of TV as an adult. Now that I live with my parents and have the post-dinner energy level of a tranquilized sloth, I have become a fan of many shows. I don’t have Netflix, so I watch what’s on cable. Some of my favorites: Chicago PD and Fire, MacGyver, Hawaii Five-O, The Good Doctor, NCIS: New Orleans, and of course that hot new intellectual thriller, Jeopardy.

Bonus favorite show that my mom hates with a passion: The Curse of Oak Island.

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Love, Undefeated

By the time you read this, you will see a completed blog post. What you didn’t see were all the drafts I deleted, trying to find the right words, only to realize that the right words don’t exist.

Although the Red Sox won the World Series Sunday night, which brought me a profound sense of joy and elation, on the whole it has been a difficult last few days.

What happened in Pittsburgh on Saturday has affected me deeply. Not that the other recent tragedies we have faced as a nation are less disturbing or sad, it’s just that this one struck close to home. Although I am not Jewish, the pain I feel for their community is significant and raw.

To think that such carnage could take place at a house of worship has shaken me to the core. Those who attended the Tree of Life synagogue last Saturday were there out of a devotion to one another, and above all, to God. We may be of different faiths but I can appreciate the sense of meaning and purpose they derived from their spiritual lives.

As a Catholic, I love my faith very deeply. It sustained me through the most difficult time in my life several years ago, serving as a life preserver when I felt myself drowning in frustration and sorrow. Although I am home-bound and find it difficult to make it to church as often as I’d like, watching the mass on Sunday on my computer is the highlight of my week. To worship with a community of believers, even over the internet, fills me with gratitude.

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The Reluctant Traveler: The NORD Breakthrough Summit

On stage at the NORD Breakthrough Summit. Dr. Gupta leading the discussion on the right.

Last week, I had the exciting opportunity to speak on the opening panel at the NORD Breakthrough Summit in Washington, DC. NORD, which stands for the National Organization for Rare Disorders, is a patient advocacy organization dedicated to individuals living with rare diseases and the organizations who serve them.

The purpose of the conference was to bring together different stakeholders in the rare disease space to discuss topical issues that affect the community. The theme of the conference was “The New Era of Patient-Focused Innovation,” and my panel, titled “The Next Generation of Rare Disease Advocates”, was slated to be the keynote. I wish you could have seen my face when I found that out! It looked something like this:

As the keynote panel, we had the task of setting the tone for the entire conference. The plan was to have each of us share our personal story and how we became a rare disease advocate. Once I learned who else was on the panel, I knew we would knock it out of the park. I was thrilled to take the stage with such a distinguished group, and even more thrilled that I still qualified as “the next generation”.

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