Valentine’s Day Special: a story from Mighty Well co-founders Emily and Yousef

by Emily Levy
Valentine’s Day Special: a story from Mighty Well co-founders Emily and Yousef

I met Mighty Well co-founder, and my now husband, Yousef, when we were both 18. I was in my second semester of my freshman year of college and he in his sophomore. The first semester we were seeing each other, we didn’t know the source of my chronic pain, insatiable need for sleep, and reason that words seemed to come out wrong at times (in more ways than one!). After a summer away and a slew of diagnoses 7 years in the making, Yousef was now in love with someone who had a PICC line in her arm, an IV pole in her dorm room, and an extra fridge not used for storing booze. 

Yes, our relationship has been marked by illness, IVs, Three PICCs and now an implanted chest port.  We are more in love than ever. Here are the top 4 reasons that loving someone with chronic illness is extra sweet this Valentine’s Day:

1. We are a cheap date. Chances are we are either steering clear of booze because our liver functions are already elevated, we are allergic to half the menu, or we are fed through a gastric feeding tube and rely on the Mighty Pack to carry our meals around.

2. Little things keep us smiling. Life as a spoonie means you appreciate the little things in life. Like the time Yousef brought me chicken soup from  the Whole Foods across town while I felt horrible and my skin reeked of Chinese herbs and a garlic farm (a natural antibiotic). It was that simple act that made me know at 19 that I wanted to spend the rest of my life with him. 

3. We rock at cuddling.  Naps are our jam. Cozy blankets are what everyone gets us for birthday gifts. Our beds call our name. When I’m feeling extra achy and my joints are acting up, I love throwing on my Mighty Wrap and snuggling with my partner.

4. We are extra loyal. True Friends are hard to come by when you live with a chronic illness or care for someone that does. Most people can’t understand what we go through until it happens to them or someone in their care. Show us that you are loyal and chances are we will be too. Yousef showed his loyalty by coming to every doctor appointment that he could, asking over and over if I “scrubbed the hub” on the extension of my PICC line, and by giving his all to Mighty Well. 

Life is unpredictable. Anyone who really knows me will know that I spend every spare dollar I have on concert, comedy, or theater tickets. Unfortunately, my favorite activities mean planning sometimes a year in advance. Yousef and I love Ed Sheeran, so one year I got Yousef and I tickets to his local concert. Little did we know, that the day before the concert date, I would be getting a port placed on the right side of my chest. It was the worst pain I have ever felt in my life. Nonetheless, we loaded up my mighty pack and went. It was excruciatingly painful but my smile was from ear to ear. 

Sometimes I swear Yousef was a nurse in another life. Yousef is at his best (and sometimes most annoying) when I am doing my infusion. The man has learned how to access and deaccess my port, put my PICCPerfect on me properly, and set up saline bags. He is the first to badger me about “did I remember the heparin?!” Sometimes I am capable of doing these things myself, and usually during IVIG I am not. He is my lifesaver. Nurse Al-Humaidhi has a nice ring to it.

Before we found out that I have POTS, we thought the fact that I often got dizzy when standing was just one of my quirkinesses. The first time we went to a Broadway show together, I almost fell off the balcony. Yousef caught me and it was a real Prince Charming moment because it was our first Valentine’s Day weekend. He will forever be sweeping me off my feet!

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