The Butterfly in my Throat : Back to School

Late Sept 2007

In August, I prepared my return to school. Everyone was in the real world except for me. My family wasn’t sure I was physically able to make it back for my junior year of college. That was never an option in my mind. School was definitely going to happen. Life was definitely going to continue the way it SHOULD. In my mind, it was all in my control. 

I lived alone in a small dorm apartment on campus. I enrolled in a ton of classes. I started to work at the admissions office again. I started an internship. I made friends. I sang in multiple choirs. I was so busy. Nothing stopped me. I took my pills. I did my monthly blood tests. 

Dealing with new symptoms.

Migraines were common. They were very severe and always started the same way the T.I.A. started: loss of vision, mild confusion, intense light and sound sensitivity, and incredible pain. Naturally, I panicked every time. Every time I saw black and white lights in my vision, I would start to panic, waiting for the inevitable migraine or T.I.A. I've been to the emergency room many times over migraines, simply out of fear that it was actually something quite serious. I always thought they were going to kill me.

My skin was rough. It was broken out most of the time, dry, and there were always dark circles under my eyes. I caked on makeup everyday. I looked a teenager going through puberty. As a typical self-conscious woman, this was frustrating and awkward for me. 

I was extremely Vitamin D deficient and very physically weak. 

I disliked all photos of me. All I saw was a giant deformed neck and big, tired looking eyes. 

I caught a little cold at the beginning of the school year. It was nothing important, but I got my ear pierced. I did everything right - I kept it clean, I applied the ointments, but nevertheless, it got infected and wouldn’t heal. It was just one of the many new things I learned after my diagnosis. Cuts, bug bites, piercings - they don’t heal quickly. A pair of pliers had to cut the earring off my ear. Now it's scarred. 

Short term memory loss.

In general, my condition was a joke to me. I constantly laughed about it. I constantly wore it as a badge of honor because it gave everyone a source of entertainment. My friends and I started joking about my T.I.A. gibberish, “Want to go to Hob Tobba [Hot Topic]?!” “I would love a glass of watness [water] right now!” I thought it was hysterical. I thought I was being a good sport about it. This all changed once I realized that my short term memory issues were getting in the way of my life. 

This wasn’t Hollywood-style memory loss. I didn’t meet people and immediately forget them. I forgot things about people. I forgot names, how I knew people, I forgot things I was asked to do, I forgot information. I compulsively wrote things down. People gave me strange looks when I pulled out my notebook and wrote down everything they said. I prayed so much, and cried so much for my memory to return. 

I was spending time with my friend one afternoon when she mentioned her brother. Confused, I asked, “Wait? You have a brother?” … She looked at me like I was crazy. Of course she did. I KNEW that. He went to school with us, but I totally forgot. Moments like these were common. "My brain isn't working." 

"Normal" is different for everyone.  

I should have talked to my professors about my condition. I should have been more open with my friends about how it was all affecting me. Class, work, hanging out with friends. It was really difficult. The jokes started to hurt me because it all started to sink in. “Watness” translated to, “Remember that time you almost died?” I didn't tell my friends until years later. It bothered me. Now, it is a badge of honor but for different reasons. It reminds me that I survived. 

There was so much bubbling beneath the surface, and I never said a word about it. On the outside, things can seem together, but a person may be dying on the inside. I don't know why I wasn't totally honest. Perhaps it was my pride or perhaps I didn't want to accept that this was my normal situation. This disease was something I had to actually live my life around and not vice versa. 

Graves' is not a convenient disease. It doesn't care if you have an important paper to write, it doesn't care if you have a project at work, and it doesn't care if you are a mother, father, student, or a celebrity. It's important to be open with friends, family, and colleagues about diseases and conditions. It's important to remember that "normal" is different for everyone. It's important to remember that "normal" will change, especially with disease. 

*Here is a video from Hank Green (from vlogbrothers) explaining his "new normal" with ulcerative colitis: Living with a Chronic Disease

Under control. 

By December, the medications were helping. The migraines stopped coming. I was taken off my anti-clotting medication. By Christmas 2007, my memory was back to normal. It was God's Christmas present to me... my favorite present ever.

Be blessed and be well,

J