My Marfan Tale — Part 2
Xem bản dịch tiếng Việt/ For Vietnamese, please see: Đau lòng.
- Dislocated lenses (My Marfan Tale — Part 1)
- Broken heart
The doctors at Children’s were indeed good at this stuff. They gave me a diagnosis: Marfan syndrome.
I don’t remember how the diagnosis came about, but that wasn’t important at the time. The important thing was to find out what it was and how to deal with it. It was like going to the doctor to ask why your nose kept running even though you had taken all the NyQuil you could. We wanted to know why my eyes were different, why I couldn’t just put on a pair of glasses like virtually two third of my class and let my parents blame television for ruining my generation’s vision. The doctors at Children’s had the superpower to solve this mystery. Marfan was a straightforward, convenient answer to all the questions regarding my eyes, most often directed at my parents. “Why do you let her read so up close?” “She has Marfan.” “Why don’t you get her glasses?” “She has Marfan.” “Why don’t you fix her eyes?” “She has Marfan.”
Nothing could fix Marfan, it so seemed. We were told that I must avoid contact sport and demanding physical activities, and I must have regular checkups. These orders hardly bothered me for I had never been an athletic kid. They probably bothered my parents, both of whom were very active and fit and had always tried to make me more like them. Now they had to let me curl up with my books. Not only had Marfan rescued my parents from uninvited comments regarding their parenting methods, it also excused me from expectations that I never meant to meet. Everyone was happy.
Almost everyone. My mother was constantly upset over my status of having Marfan. She refused to believe that I was okay with not running around playing soccer. She thought it was terribly unfair that the content of my classroom’s chalkboard was invisible to me, and that it was her job to make up for it. She flung herself into fruitless meetings and talks with my teachers and doctors to get me the best seat possible. When the teachers finally gave up and moved me to the front row, she would ask me if it helped in such a desperately hopeful voice that I felt obligate to say it did (it did not). She took me to checkups every three months. She took complete responsibility for the fact that I had to get up early, wait in a long line, let people poke me in the eyes, let people put gluey gel on my chest for an echocardiogram, get exhausted from being tossed from one clinic to the next. She constantly petted me the way one pets a terrified cat at the vet, apologized for everything, and rewarded me to my favorite food after the countless examinations were over. She always said it was unfair that I ended up with all the bad luck while everyone else was fine. It was like I happened to walk by when the gods were spraying Bad Luck and got a full blast, and my mother felt guilty that she could not protect me from it.
My mother died in 2000, five years after my diagnosis of Bad Luck. She had a heart attack. She was doing laundry when she had a terrible chest pain. We took her to the hospital. The doctors shook their heads and said she has a tear in her aorta. The fancy word was “aorta aneurysm”. There was nothing they could do. She stayed in the hospital for ten weeks and we watched as everything that was made of her left. She was tall, stunningly beautiful, her laughter loud and contagious. She lost weight until she was the size of a skinny ten year old. The extreme pain episodes came more often and took her consciousness away. Her speech went next. She could not call me or my brother. She made some sound that resembled a baby learning to talk, we knew what she meant but we could not hear what she said. Even then, she was so determined to live. She wanted to be transferred to France. She wanted to try everything. So we did. But nothing, even her enormous determination and optimism, was enough to reverse the tear in her aorta.
After my mother’s death, life was rough for all of us. We were now a helpless family of a single father, a new teenager, and a four year old. A very young, strong-willed woman joined us a year later and became my stepmother two years after that. We were all busy wrangling the family, and Marfan was pushed to the side and almost forgotten. I had a handful of checkups in five years. I was used to my bad vision; I could handle classes without seeing the board. My friends took me to school and back home so that I would not crash into things. They accepted Marfan as a part of me and asked no more about it. The peak of interest in Marfan that I received from my friends was when one girl pointed out a line in our genetics textbook that said “Marfan syndrome is linked to a dominant mutation on chromosome 15.”
After my first year of college, I took a trip to visit my aunt in Saigon. Knowing about my eyes, she insisted to take me to a checkup. But first, I had to explain to her what it was to be checked.
“My lenses are dislocated.” I said.
“Why?” She asked.
“I don’t know. I have this thing called Marfan syndrome. They told me to not run and do heavy sports.” I shrugged and reported the one thing I knew about my condition.
“Why not? Would running knock your lenses out of your eyes or something?” She kept on.
“I don’t know. I don’t think it works that way.”
“So how does it work?”
I didn’t know the answer to that question. No one ever asked me that. I never asked anyone that. I lived with Marfan as a normal part of my life and did not question what it really was. On my aunt’s computer, I went to google about Marfan for the first time, ten years after my diagnosis. There wasn’t much about it even on the Internet, and my English wasn’t good enough to read. I picked a short Vietnamese article on a casual online magazine. I am only recalling it from my memory now.
“Marfan syndrome is a genetic disorder that affects the connective tissues. The typical symptoms are tall and lanky stature, dislocated lenses, double joints, lungs complications, and most seriously, aorta aneurysm.”
All of sudden, it hit. My mother had Marfan syndrome and died from it. She had the same mutation on chromosome 15 that got passed on to me, and this same mutation messed up our connective tissues. That was why we were both tall and lanky — connective tissues made up the bones and joints. That was why my lenses were dislocated — connective tissues held them in place. That was why her aorta broke — connective tissues made up blood vessels. That was why the doctors had told me to not play sports: they did not want my aorta to break. That was also why I had regular echocardiograms, so that any funny business around the aorta would be detected early. I did not get the full blast of Bad Luck, my dislocated lenses gave the obvious but not deadly sign of Marfan, and I was protected from its more vicious attacks. My mother did not know it was coming for her, too. She got the full blast.
Years later, I still wonder what it would have been like if we had known. What if my mother had been diagnosed and put on the precaution measures that I was on for years? Could we have delayed the aorta aneurysm a little while? Could we have detected the tear a little earlier, a smaller and manageable tear? Could we have bought some time for medical science to develop a treatment for small aorta aneurysm, which it did, and saved her? The questions snowball into a helpless feeling for the irreversible past. It is like I am forever swallowing a gigantic bite of a bitter and heavy substance. It hurts.
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