This is a story about what I did on a typical day while completing my internship at Boston Children’s Hospital this past summer. I hope that you find it interesting!

My Morning Routine

My alarm on my Amazon Echo rings to wake me up at 7:30 AM. I yell at it to turn off and then go back to sleep. This happens a couple more times before I finally surrender to Alexa and wake up. I take off my CPAP mask at I use for my sleep apnea and turn off the machine. Following that I pick up my phone and turn off the app that I have been using to track my sleep cycles; my lights turn on automatically. It displays a chart with sleep patterns as well as a score out of 100% of sleep quality. Slowly, I get up off the bed, rolling onto my side first because I can’t sit straight up, and stumble into the bathroom, practically blind without my contacts on.

After my shower, I put on my contacts and brush my teeth and shave, putting half of my weight on the sink to support myself. I also use an electric toothbrush and shaver to make those tasks more manageable for me and to prevent me from accidentally cutting myself. Following all of this, I get dressed while listening to Alexa give me the news for the day starting with the Washington Post, and ending with Cnet. I pack myself lunch (usually a sandwich) and have breakfast: often a few scrambled eggs, bread, and a glass of milk. I then use Alexa to order me an uber and head off to the lab.

On the way, I log the food I have eaten into my phone. Sometimes I will practice mindfulness meditation using an app on my phone, but more often I will just sit quietly for the 15-minute ride.

My Day

I get to the lab around 9:30 AM usually before the postdoc Matthias, that I am working for. In my spare time, till he comes in, I check my emails or read the news: political, business, and tech. Once Matthias comes in we start the experiments for the day, this includes procedures such as western blots, morpholino injections, PCR, and drug screenings. During the day I usually take a short lunch break, usually about 30-45 minutes.

Sometimes we will have to set up or take down breeding tanks for zebrafish that we may be using. Walking to the fish facility, which is in another building is particularly challenging for me. Due to my myopathy, my neck and abdominal muscle are significantly weak. It has come to a point where I have to hold my head up with my hand while walking. Nevertheless, I don’t let that stop me from doing what I enjoy and have been able to explore a lot of the city of Boston on foot.

After work, I go to the gym across the street and workout for a little more than hour. I usually do a lot of cardio, and strength training focus on my flexor muscles (the ones on the front of your body), and a lot of stretching on my extensor muscles (the ones on the back of your body). I keep track of everything using a fitness watch and an app on my phone. My workout is one of the most important parts of my day, not only because I enjoy it, but also because it improves my muscle function, which is extremely important to me.

After my workout, I grab a protein shake and then hop in an uber and head back to my apartment on the Harvard Business School campus.

My Evening Routine

Back at the apartment, I spend an hour or so practicing for my math 2 subject test or getting a jump start on my college essays in a resident lounge on in the building. I have dinner which I usually make myself or order in. Sometimes, when I am in the mood, I cook a meal that I have gotten from a meal-kit service such as Blue Apron or Hello Fresh. I really enjoy these because I am able to make delicious food with fresh ingredients, but I don’t have to deal with the hassle of grocery shopping which would be hard for me because I would have to carry the groceries back to the apartment.

After dinner, I usually just chill watching TV or chatting with friends. Around 11 - 11:30 I take off my contacts and get ready for bed. I put all of my devices on chargers, set my alarm for the next day and turn on some relaxing music set to automatically turn off. I turn on my CPAP machine turn of the lights and go to bed: ready to do it all over again the next day.