Thursday, September 9, 2010

"You can't always get what you want...but if you try sometimes, you get what you need"

So, I've been putting off finishing my back story, because this is where it gets a little difficult to talk about. Hypothetically, it should be easier to talk about the good times than the bad, but that doesn't seem to be the case here. Therefore, I'm going to give you the shorthand version of what I like to consider "The Calm Before the Storm."

I don't remember quite how it happened, but I'm pretty sure it was real. I was just sitting on the runway at O'Hare International Airport, waiting to take off on a trans-Atlantic flight to London and trying desperately to remember how to breathe. I'm fairly certain I was having a panic attack.

What am I doing here? How did I even get here? Something was supposed to go wrong. Something was supposed to fall through. I couldn't get the money, I wasn't able to get my visa, I tripped and busted an ankle going through security--ANYTHING! Something was supposed to keep me from reaching this point. Something always does. And yet I'm sitting here, between a couple from Bath and an incredibly dubious-looking Russian man that keeps adjusting his rings and cracking his knuckles, taxiing the tarmac. What am I doing?! I didn't prepare for this! I never once considered the possibility of making it this far, and now it's happening and I WANT OUT!!

Two glasses of wine and a few sleeping pills later, I was handing my passport to a customs agent at Heathrow International Airport in London, and embarking on the greatest adventure of my life. I know that word "adventure" is incredibly corny, but there is really no more appropriate word for what I was about to begin.

I began my semester with three days in London, seeing the sites, checking out shows in the West End, and partying all night long before catching the sunrise in Trafalgar Square. After that, we flew to Lyon, France and took a bus to Grenoble, my home for the next five months. Grenoble is one of the most beautiful places I've ever seen in my entire life. I've never been anywhere in the world that felt more like home. It's about an hour from Geneva, Switzerland in the north, and two from Turin, Italy in the east, and is the last major city you will come across as you enter the French Alps. It lies in the valley between three mountain ranges and is bordered by two of France's greatest rivers, Le Drac and L'Isere. Before driving through the passage in the Belledonnes that leads into Grenoble, I had never before seen a mountain in my life! And now I lived in a city with a 360 degree view of some of the most majestic mountains in the world. It was an incredible feeling, just bearing witness to this incredible feat of God and nature.

Considering my initial panic and subsequent breakdown, it was amazing how quickly I made Grenoble my home, moving in with the most incredible little French-Sicilian woman I've ever met in my life. Brigitte Bevilacqua is...well, pretty much indescribable. She is the funniest, most comforting, passionate, spitfire of a woman you could possibly imagine. I love her and her daughters, Celine and Elodie, who became like the older sisters I never had, more than I could ever possibly express. I began my semester at L'Universite de Grenoble Stendhal in late January. I took some very intensive language courses, as well as 20th Century French Literature and The History of France from 1914-present--of course, all conducted entirely in French to a student body composed of students from China, Korea, Germany, Brazil, Chile, Columbia, all over the world. It was honestly a learning experience like no other.

What taught me more than anything, however, were the experiences I had overcoming obstacles in my new hometown and the lessons I learned while traveling. Over the course of the semester, I traveled to Venice, Rome, Paris, Geneva, Prague, Dublin, Galway, all over Ireland, Annecy, Marseille, Chamonix, all over Provence and the south of France... I went everywhere. I went hiking in the Alps and even visited the top of Mt. Blanc, the tallest mountain in all of Europe! I traveled, BY MYSELF, to the Czech Republic, stayed in a hostel, spent my Easter painting messages of peace and love on the John Lennon Wall, and met what became a rag-tag crew of the most amazing people from Ireland, Canada, Australia, and New Zealand. I went to Vatican City and stood not three feet away from the Pope! I had an incredible picnic lunch at the bank of Lake Geneva, went swimming in the Mediterranean in the French Riviera, and witnessed monks making liquor at a monastery deep in the Chartreuse Mountains. I climbed a wall into an ancient little cemetery in Ireland and laid flowers on the beautiful, forgotten graves, with their ornate Celtic crosses dating back hundreds of ears, and climbed the towers of crumbling Medieval castles. I went to Paris and stood in L'Orangerie, staring at 360 degree panoramas of Monet's Waterlillies with tears in my eyes--the same tears that I experienced when admiring the Winged Nike of Samothrace and Cupid and Psyche in the Louvre and of course when I witnessed the Eiffel Tower, itself.

I trekked all over Europe and saw some of the most incredible wonders of the modern and ancient worlds. I made a home for myself in a foreign land, became part of a whole different sort of family, made the greatest, most supportive friends I've ever had in my life, and learned unimaginable things about myself. It was the most incredible experience of my life.

And what is possibly the MOST incredible thing about it: for those five months, I was the healthiest I've ever been in my life. I didn't get a single cold or flu. Not once did I twist an ankle or have a kidney stone or migraine. Even my acne cleared up! I decided to bask in the pleasure of my experience, eating the most rich and delectable food in the world, and not worry about dieting or working out. Nutella crepes and croissants became my closest companions, and I vowed to enjoy either a pastry or gelatto everyday that I was there-- I mean, how many opportunities would I have in my life to partake in this kind of pleasure? And believe me--I partook! And despite all this, I still lost TWENTY-THREE POUNDS!! Can you imagine?? I decided this place must surely be magical.

But I guess that magical bubble had to pop some time. I tried to put it off for as long as possible, but there came a time that I just had to go home. My first thought was that I had to try to bottle the magic and bring it home with me. Unfortunately, I realized that it wasn't that this was some supernatural place where the stars aligned and were rooting for me, but that a lot of what felt magical was really just the incredible ways I had changed and grown as a person. I say "UNfortunately" because most days I think bottling the place would have been easier than carrying home my new positive attitude and perspective on life.

For a while, it wasn't so difficult to remain the person I had become. Life was going quite well. I had missed my family and friends and was happy to have the opportunity to spend time with them. I relished in the comforts of home (Mac n' Cheese and I had been separated for FAR too long!), and was really anticipating a long, hot summer of lounging around and soaking up the sun. seems that life had a different plan. I guess the most critical mistake was mine: I had come to believe that because I had not only survived, but thrived as a normal, healthy, happy person for five months in an incredibly challenging situation, that my struggles were over. I thought it was karma--I had put in nine years of pain and disappointment and now I would be able to live a normal, healthy, pain-free, fulfilled life like everyone else. Armed with my new attitude and appreciation for life, I was going to conquer the world. I could go anywhere. Do anything. "Debbie Downer" was no more, and in her place was a confident girl who was ready for love, adventure, challenges...

Well it looks like the Fates only caught the back half of that memo. When I said "challenges," I meant that I wanted to graduate, find my first real job, move somewhere new, start a life for myself, by myself. I got challenges, alright, but they didn't exactly include finishing school or moving to Montreal!

Two weeks after I stepped off the plane, I had my first kidney stone--err, two kidney stones, rather--post-bubble pop. By the end of the summer, I had had two more. My migraines had returned, and by Labor Day I was sitting in Dr. Wood's exam room with a right foot so floppy, I could hardly walk on it. He was a little concerned, but said it had just stretched back out and thought that we could fix it easily enough. He would do a series of three autologous platelet graft injection procedures over six weeks and assured me that it would tighten everything up and hold it together for at least about three years without having to do a full surgery. So I had my first procedure the day before Halloween. I was surprised that they had to put me under full general anesthesia for an injection, but the procedure required him to poke about a hundred holes into the ankle before injecting the spun-down platelets, which I suppose is probably a pretty painful experience. My first two injections were incredibly successful. I was amazed, because nothing ever works on my ankles like that. He didn't do any actual cutting at all, and yet my foot was standing straight up!

But as all things in my life seem to be, it was a little too good to be true. The Monday before Thanksgiving, I was standing in my kitchen, just talking to my mom on the phone when I felt the tendon in my left ankle snap. It was DEBILITATING and I hadn't even done anything! I wasn't walking. I wasn't even shifting my weight. And it just snapped! Dr. Wood said it was impossible. Tendons don't just rupture like that. Ligaments, maybe, but not a tendon. Not to mention, he had only ever heard of one case of a Crisman Snook reconstruction rupturing and it was because the woman was in a horribly mangling car accident. He was absolutely positive that what I felt couldn't possibly have actually been a rupture, and yet the foot that had been perfectly straight only three days before was completely flopped over and I had no ability to pull it up from this position. After an inconclusive MRI, and many consults with baffled colleagues, we decided to try the APG injections on the left ankle to see if it yielded results as successful as those on the right foot. So we finished the third injection on the right and completed two on the left. All the while, I had to wear giant cam walkers on both my legs and hobble with crutches. It was definitely difficult, but I was able to finish the semester at school and make it through the hectic Christmas season without accidentally killing myself.

January 5th, I trudged to Dr. Wood's office once again (which is out in Indiana, by the way) and waited patiently to see if the second injection had taken. The first was a complete dud, so we were basing all future actions on the results of this second injection. I held my breath as he carefully cut off the compression bandages. I couldn't stop the tears from welling up in my eyes when my big toe hit the foot rest. It didn't work, and in the meantime, it had only gotten worse. We couldn't just leave it, but there was no protocol for fixing this procedure, because it had never failed and didn't even seem possible. Dr. Wood decided to take my word for it and go in to inspect and repair any damage he found. I wasn't thrilled about the idea of cutting in with absolutely no idea what he'd find or any plan for what he would do once he found it, but I have a lot of faith in Dr. Wood and decided to go through with the procedure--even though it would mean that I would be completely non-weight bearing for a full TWELVE WEEKS. That's three months! It certainly wouldn't make school easy (I lived in the basement of my apartment at school and would have to travel all across campus for my classes. In a northern Illinois winter.), but he assured me that I would only have to miss the first ten to fifteen days of the semester at home in bed. Then I could use crutches to get around. So I agreed... like I had any choice.

So we did the surgery two days later. And it didn't go well.

Turns out, not only was I right about the tendon rupturing, but there was also extensive tissue death. The tendon didn't just tear in half as we had imagined, but instead had somehow shredded itself along the length of the tendon. Strands of ruptured, dead tendon had started snapping and springing back up into my calf until it was weak enough for the majority of the tendon to rupture. He said that over 2/3 of the tendon was dead or no longer viable, so he removed those pieces and was left with one small strand still alive and in place. He had expected to be able to just reattach the two severed pieces and call it a day, but that was not remotely an option with that kind of damage. His only possible option was to graft a part of my Achilles tendon to attach to the lone strand, but that is an incredibly risky solution and he decided that I was not a good candidate. So after removing the dead strands, he just closed me back up and cut our losses. I was not remotely optimistic about this solution. Although he wouldn't admit it, I could tell he wasn't either.

You know the phrase "when it rains, it pours"? Well, they wrote it for me. Four days after the surgery, I was still in excruciating pain and keeping myself drugged and passed out almost 100% of the time. The only times I moved at all were the necessary two trips a day to the commode--the commode that was positioned not two inches from my Lazy-Boy. Well, apparently using that little toilet was just too much to ask for. It was the straw that broke the camel's back--err, the right ankle's ligaments, rather. I had still been wearing the secure cam walker and only putting weight on the foot (with crutches) long enough to stand up and sit back down a few degrees to the left. But of course, that's all it took. I destroyed it.

Doc said he didn't feel comfortable operating on this second ankle before the left was healed, so I've now spent the last three and a half months holed up in a bed that my parents moved into my dining room. Both of my legs are casted and, until a week ago, I haven't been able to but any weight on either foot whatsoever. Unfortunately, that means I've now spent 3 1/2 months moving myself around on my arms. Sure, I don't go far--just to the commode beside my bed--but just those few transfers a day on my arms were enough to destroy them. Before long, I began to dislocate my shoulders every time I attempted a bathroom break. My elbows get locked so far into hyperextension that I can't bring them back on my own. It's a miracle that anything is left holding my wrists together with the stress I've put them through. All of this was incredibly painful, but I still just assumed that it was all par for the course when you can't use your legs and your body is stiff and atrophied from bed rest. Turns out--not so normal.

It was my podiatrist who first said the words: "Ehlers. Danlos. Syndrome." 

He brought up this rare genetic disease one day about two months into my convalescence, not as a possibility, but as something to rule out. I had torn the remaining ligaments in the right ankle the day before, just sitting in my wheelchair while my parents moved a hospital bed into the dining room (because I could no longer sit up on my own without a dislocation). I had just been sitting there with my legs up and the weight of my foot alone caused the snap.

***I had begun writing this post in April, with the intentions of finishing it soon after... That didn't exactly happen, but I think I'm about ready to pick up the tale. Please excuse this abrupt cut-off for now, until I am able to start writing again...***


  1. Glad you're back to writing :)
    Sending the juju and everything good. xx

  2. Dear Brianna:

    I don't know if you remember me. I'm Mary Lynn Valentin and I used to go to St Ann's and pretty much watched you grow up from the Choir area. God bless you and your family. I just read your blog and am praying for a miracle. It is probably too hard to embrace but...I remember a little girl in the garage of the old St Ann's who had such a strong faith and who wrote and sang her own songs. The light is still within you and I pray for you. What can I do to help? I am rooting for you...
    With love and prayers,
    Mary Lynn