The Picture of Courage

Megan and I met 10 years ago this past April. We were on a walking tour of Vanderbilt during "Decision Weekend," in which admitted students are invited to campus to help them decide if they want to attend the university. Walking side by side, with our parents in tow, neither one of us said a word to each other (being both shy and overwhelmed at the prospects of future college life). Finally our un-shy parents struck up a conversation with each other and introduced us.

Once we started talking, we couldn't stop. I learned she was from Atlanta (she definitely exuded refinement and Southern charm). She loved Martha Stewart (pre-prison time) and Aretha Franklin (this was a surprise). She loved babysitting and Vera Bradley bags and Christmas time. And she was hysterical (although she didn't know it). We were so into our conversation, and how much we had in common, that neither one of us saw the telephone pole right in our path. And the next thing I know, Megan walks smack into that wooden pole on busy 21st avenue. I knew she was mortified, poor thing! But Megan shrugged her shoulders, swept back her gorgeous dark hair, and said with a big smile, "I'm fine, I promise!" and gracefully kept walking down the street. I loved her instantly.

The rest of weekend that Megan and I were inseparable. In our conversation, she told me her dad really wanted her to go to the University of Georgia (it was free, so who could blame him?). But I knew in my heart we were meant to be lifelong friends, so I spent the next few weeks calling her, harassing her really, trying to persuade her to go to Vanderbilt (sorry, Mr.Gaddis!). My powers of persuasion worked and Megan sent in her acceptance packet. I was overjoyed.

Megan and I were freshman roommates. Everyone was so impressed with our matching Pottery Barn floral duvets and our coordinating sheets, pillows, picture frames, bulletin boards - okay so we went a little overboard. But it was our new home and we loved it. It wasn't an easy year but we made it through together. We made all the same precious group of friends that lasts until this day. We roomed across the hall from each other sophomore year and together again junior year. Senior year I felt an urge to graduate early and get married. Megan was one of my bridesmaids. We stayed close after college, visiting each other at least once a year on a girls' trip. We talked often on the phone about everything from the absurdity of match.com to the latest Barefoot Contessa cookbook.

I was so excited to talk to Megan when I was pregnant with ML. She knew more about children than I did after having been an avid babysitter, child development major, and an amazing kindergarten teacher. I always told her she was going to be the most amazing mother with her patience and gentle nature. But in the months before my due date, Megan never returned my phone calls. I didn't think much of it at first, as she was always so busy with a new art class or organizing a Bible study, and I was preparing for a new baby.

But I would soon learn that during these few months Megan was in the beginning stages of one of the worst diseases I had never heard of, and she didn't even know it. She had strange experiences where she couldn't remember where her keys were or couldn't remember how to get home from a usual store. Nothing that serious, so she just chocked it up to stress. But when these odd occurrences didn't stop, Megan went to see her doctor but was assured that she was as healthy as any 26 year old could be. But then her handwriting started becoming sloppier (unusual for Megan who has beautiful penmanship) and other normal life became more difficult.

Megan didn't mention any of these things to anyone for months (probably not wanting to burden anyone in typical Megan fashion) and just tried to figure out ways to compensate for her weakening abilities. For instance, she had her one of kindergartners write down the lunch count every day at school. And while at lunch with a mutual friend, she asked the friend to sign her credit card receipt. The friend didn't think anything about it, but later realized it was because Megan could no longer write her name.

I finally spoke with Megan about this time and she told me she had gotten into three different minor car wrecks in one week- she said she couldn't remember where the break was. That's when her parents realized something was seriously wrong and started taking her to every doctor in Atlanta they thought could give them answers. As we got off the phone, in her usual upbeat voice, she said to me, "Don't worry, I am sure everything will be fine!"

I was so worried Megan might have a brain tumor or early a super early onset of Alzheimer's. But I was elated a few weeks later when we spoke and she told me that the doctors had done every test, scan, X ray imaginable and everything came back normal. What a relief, I said. I just knew she was going to be okay.

But everything was not okay. Megan's condition continued to worsen. I talked to her on the phone a few weeks after her "good results." She was in the car with her mom racing to another doctor's office. I asked her point blank what was going on. Megan struggled to tell me something, but couldn't seem to find the words to say it. She had to hand the phone to her mom. It was the last time Megan would ever talk to me. A few weeks later when I called, her speech was completely gone. Her mom held the phone to her ear and I sputtered on like a fool telling her how much I loved her and cared for her and how I would do anything to help her get through this. It was such a scary time. Everything was happening so fast and no one could seem to stop the downward spiral .

It was a month or so later in June 2007 that her family received the awful diagnosis: Megan had a rare variant of of the degenerative brain disease known as CJD, or Creutzfeldt-Jakob Disease, that affects one in 150 billion people. There is no cure, no treatment, no radical clinical trials, no hope at all for those diagnosed. Once you are given the diagnosis, you go home and await death. Most people with CJD are old, and live only a few days or weeks after diagnosis. But because Megan was a healthy young woman, she lived a year before succumbing to the disease nearly a year ago.

By the time the doctor's figured out and correctly diagnosed her disease, Megan's mind was too sick to know and understand the diagnosis. God protected her from knowing what was going to happen to her in the coming months and we were so thankful for that. But while she never knew the official diagnosis, Megan definitely knew during the months leading up to this that something was terribly wrong with her mind and body.

And that's what is so inspiring to me about Megan. She must have been so frightened and felt so alone as she slowly lost her ability to complete everyday tasks and then later as she was poked and prodded by doctor after doctor - most of whom were unable to give her answers. But as her mom later learned through her journal, her faith in a sovereign God did not waver. Her journal was filled with prayers of adoration and praise for the Lord, and also prayers of dignified courage and amazing strength. While her handwriting was faltering during those last few entries, her faith did not. I am sure her mom won't mind if I share one of her last journal entries, in which she wrote something to the effect of "Lord I don't know what's going on with my body, but I know you have a plan and a purpose and I trust you." How amazing that with so many dark and unknown waters surrounding her, Megan was able to put her complete faith in Jesus. She wasn't angry or bitter, even though I am sure she felt her life was spinning out of control. And she didn't know if she would ever get better, but she knew the Lord knew His plan for her. And she trusted that.

So many people are brought up in the church, go to weekly Bible studies, and love to sing wonderful hymns and songs about Jesus and his love, his mercy, and his sovereignty. But when life really gets tough, how many people really fall back on those truths? How many turn instead to curse His name? Not Megan, she praised Him, and trusted Him, and loved Him. While no one else was looking, in a quiet corner of Atlanta, Megan walked through the darkest and loneliest valley, all the while holding onto to the one who said He would never leaver her, and that was Jesus. She picked up her cross and followed Him all the way to end. And so today on what would be her 28th birthday, I remember her strong and pure faith and her amazing courage. I miss my dear friend and think about her every single day, and every time I do - especially during this particular time in my life - I am given a true picture of true courage.

Creuzfeldt-Jakob Disease Foundation

http://www.cjdfoundation.org/