Lupus May Have Slowed Me Down, but I Won't Stop Fighting to Earn My Degree


My heart is racing, my throat is dry and my mind is spinning. I’m doing my best to take slow, careful breaths, calm my nerves and realize that things are not insurmountable. Taking a shaky breath, I steel my resolve and open the email. It’s just an email. From my graduate school advisor. Once again into the breech we go, only this time I’m not coming up for air until I finish this damn degree I started before “being sick” occupied all of my “free time” and then some. This time I will complete what I started and I will not let anything, including lupus, fibromyalgia, diabetes or any of the host of other complications that come along with being chronically ill stop me from achieving this goal. I owe this much to myself and everyone who has helped me along the way.

I waited 11 years after completing my Bachelor’s degree to begin the Masters of Music in Music Education program. There were some benefits to waiting. As a more “mature” (OK, older) student, I had already been teaching for over a decade, bringing my experiences in the classroom to the theoretical and philosophical discussions. Also, by this point, I was married, lived in my own house and had my first child, which meant no lousy cafeteria food and communal dorm living. (Although my son who was 2 ½ years old at the time did like to party late at night and did leave quite the mess for me, so…) Laundry services were readily available and didn’t require quarters and I got to sleep in my bed every night. (And if I happened to show up the first day with a whole set of brand new notebooks and sharpened pencils and everyone else pulled out their laptops…well, I guess it just added to my folksy charm?!)

I made a wonderful group of friends, the kind of brilliant minds you meet in these high intensity summer only classes that push you to the limits. You bond over late night research sessions and overtired inside jokes. Together, we laughed, cried, sang, drank, ate and read – lots and lots and lots of reading – deep, scholarly reading that makes your head hurt and eyeballs cross and makes you question if these words really exist or if someone just made them up to make you wonder!  We pushed and pulled each other over deadlines the way comrades in arms do. I’ve always been someone who works best in groups, so this dynamic was perfect for me. I knew as long as I had “my crew” I’d be fine. Or so I thought.

The next summer I had my daughter, Lizzy, so I took the summer off from classes. I still kept in touch with my awesome “crew” and kept my finger on the pulse of what was happening with the classes and curriculum and assumed I would just jump right back in and finish up. What I didn’t count on was my body’s own betrayal.

While I was pregnant with my daughter, I had begun moving from “mixed connective tissue disease – we think” or “lupus-like” or “pre-lupus” to “Amanda, if it looks like a duck and quacks like a duck…it’s looking like lupus.” More and more odd and disturbing symptoms were occurring and trying to balance these with raising an infant and 3 ½-year-old while teaching full-time was draining more and more on me.

 

I went into the next two summers of classes run down, exhausted and on the verge of collapse – I just didn’t know it yet. As my brilliant group of classmates finished and moved on to more and more incredible feats, I struggled with basic homework assignments as the inevitable “brain fog” made the reading assignments more and more challenging to nearly impossible. Evening classes after chasing my children all day became exercises in almost futility as my joints cried out in protest dragging my weary body up the stairs. Sitting in the library in hard wooden chairs led to muscle spasms and migraines.

Eventually, horrific chest pains that wouldn’t let up brought me to the ER. I wasn’t even 40 and now I needed a cardiologist? (Um…no thank you?!) Long story short (too late!), a “routine stress echo that should be totally normal” revealed a pericardial effusion, or fluid around the heart – the final nail in the lupus diagnosis. There was no more denying it, no more calling it something else; it was time to face the big bad wolf in the room. Literally.

At this point, all that was left of my program was my thesis and orals – no biggie, right?! Wrong. Within the next few months of diagnosis, I was in and out of the hospital more frequently than the people who deliver the fresh linens. I was even in the same bed three different times (overlooking a cemetery, by the way – but that’s a whole other story!).

As my health deteriorated, I was working too hard to cling to anything “normal” – trying to teach, mentor a student teacher, present at my state music teachers’ conferences, all while being wife and mom and chronically ill. Attempts were made to do something about the thesis, but it just wasn’t happening. Over the next six years (and 37 hospital stays), I continued to try to start again but the lupus always got in the way. It seemed I could balance only so much before things tipped over and inevitably I became too ill to continue.

This lack of completion has become a sore point for me, a source of embarrassment. I’ve presented workshops and clinics for hundreds of people and cringe that my bio still reads “is completing her MME” (and yes, I did once have someone come up to me at a conference and comment about the fact I was still finishing – nice, huh!?). Many in my field just assume I’ve completed the degree and I’m working towards my doctorate (oh hell no). In my family, most have at least one master’s degree, if not a doctorate.

This summer I am taking back my power and finishing what I started. The professors have been incredibly accommodating and understanding that I didn’t just “walk away,” it’s been my chronic health problems that have prevented me from completing. I pressed send on the email of my proposal to my advisor and started to write this. You see, the irony is that while I’ve struggled with the academic writing needed to complete this remaining project, it’s writing for The Mighty these past six weeks or so that have helped me to begin to get past the worst of my “writer’s block” and begin to process some of my hardest hitting feelings about being sick.

It’s been the amazing feedback I’ve received from fellow chronically ill people who have told me my words have resonated with them that has helped give me the confidence to write again. As I’ve struggled with apraxia (we play a lot of charades in my house!) and can’t always trust my brain to recall the right words at the right time (something that will be crucial in my orals), I will figure out coping techniques to compensate. Or maybe the professors will let me answer in interpretive dance?

Am I scared as I go into my meeting with the department to hopefully gain approval for my final project? Absolutely! Can I be sure my body won’t betray me that day ? Not at all! I may walk in, I may limp in holding my cane. I may half drag myself in, but I know I’m going. I owe it to the “crew” who helped me those first years. I owe it to my husband and children who have supported me. I owe it to every doctor who has helped me get to this point. But most of all I owe it to me because I deserve to walk across that stage and earn my diploma. And the next time I complete my bio it will say Amanda Newell, MME!

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Thinkstock photo via cyano66.

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