꿈은 어디로 갔을까
그렇게 갑자기 풀썩 쓰러지는 일이, 그해 봄 세 번 일어났다. 정신이 들면 응급실이었다. 나중에는 눈을 뜨기도 전에 달달거리며 거슬리는 소리를 내는 들것의 바퀴가 다가오는 중인지 멀어지는 중인지 구분할 수 있을 정도가 되었다.
피를 토하고 몸을 붕대로 감싼 환자들과 달리, 나의 증상에는 뚜렷한 소견이 없었다. 퇴원 후 며칠간은 장염 증세가 이어지고 무릎이 두 개로 보일 정도로 부었다. 다리가 끊어질 것처럼 아팠다. 눈앞이 노래지고 구토 증세가 났다. 그렇게 한 달이 흐르면 다시 병원에 누워 있었다. 매일 통증에 시달리던 몸이 한순간 쿵 떨어졌는데도 겉으로는 찰과상 하나 없이 멀쩡하다는 사실이 웃기기도 하고 무섭기도 했다. 눈에 보이지 않는 상처로 아프다는 게 이해가 가지 않았다. 그게 시작이었는데 여전히 의사는 병명을 찾을 수 없다고 했다. 나는 진통제만 달랑 받아들고서 수명을 다한 폐지처럼 병원 밖으로 배출되었다.
일 년 뒤 다른 증상이 나타났다. 치아가 몽땅 빠질 것 같았다. 가만히 있어도 몸을 칼로 찌르는 것 같은 고통이 밀려왔다. 힘이 없었다. 숟가락 하나 들지 못하고 아무것도 먹지 못하니 몸이 자꾸만 시들하게 말라갔다. 어지러웠다. 정밀 검사를 받은 큰 병원에서 연락이 왔다. 두 가지 희귀병을 앓고 있다고, 염증이 번져 왼쪽 팔의 혈관이 막혔으니 빨리 조치를 취해야 한다고 했다. 염증 수치가 일반인의 스무 배에 달한다는 진단을 받았다.
살고 싶었다. 엄마가 어떻게든 해달라고 울부짖었다. 스테로이드를 먹어야 하는데 그러면 얼굴이 정말 많이 부을거라고 의사가 말했고, 나는 상관없다고 했다. 나 역시 엄마만큼 절망적이고 절박했으나 최대한 감정을 숨겨야 했다. 그렇지 않으면 내가 아프다는 사실이 무너진 댐처럼 나를 덮치고 몰살해버릴 것만 같아 두려웠다. 나는 지금 꿈을 헤매고 있는 것이라 자위했고, 스스로를 보호하기 위해 무척이나 노력했다. 그날 얻은 교훈은 인생에는 때때로 거짓말이 필요하다는 것이다. 그런 거짓말에는 여지없이 투명한 사실의 공격에도 무너지지 않을 단단한 믿음이 필요하다.
당시에 내 얼굴은 해골 같았다. 스테로이드를 먹으며 버텼지만 조금만 스트레스를 받아도 무릎이 아파서 잠을 잘 수 없었다. 몸이 커지는 약을 잘못 먹은 동화처럼 얼굴과 두피가 부어올랐다. 사람이 이보다 더 부을 수 있을까 싶었지만, 병은 언제나 상상을 집어삼킨다. 대인기피증에 걸리고 학교를 휴학했다. 방에 틀어박혀 나오지 않았다.
하루에도 몇 번씩 언제쯤 약을 줄일 수 있는지만 검색했다. 노트북을 열면 배경화면에 스무 살의 내가 있었다. 이렇게 꽃답고 예뻤는데 어느새 괴물이 되어 있었다. 돌아갈 수 있을 것 같지 않았다. 끔찍했다. 시간이 흐르면서 차츰 괜찮아졌다. 약은 계속 복용하고 있었고 식이요법을 철저하게 지켰다. 학교에도 돌아가 별 탈 없이 지냈다. 하지만 이제는 걱정하는 일이 습관이 되어 버렸다. 어느 날 나란 존재가 흔적도 없이 사라질까봐 자다가도 무릎이며 배를 더듬거렸다.
나는 여전히 백소현이었으나 이전과는 다른 사람이 되어 있었다. 피아노 건반을 누르고 음악을 할 수 있는 날들이 소중했다. 그러나 동시에 음악에 매달릴수록 불안했다. 그 경험으로 나는 또 하나를 배웠다. 너무 소중한 것을 손에 쥐고 있으면 불안하다는 것을.
Where Did My Dreams Go?
In just that year of Spring alone, I blacked out on three different occasions. When I regained consciousness, I woke up in the emergency room every single time. Later, even with my eyes closed, I could tell how close or far away the stretchers were by the sound of the rattles on its wheels.
Unlike the other patients who were vomiting blood and bandaged up, I didn’t have a specific prognosis. Even after I was discharged from the hospital, I still had symptoms of enteritis, and my knees became largely swollen. My legs were in so much pain as if someone were pulling them apart. Everything appeared to be seen in yellow, and I was always nauseated. A month later, I would wake up in the hospital again.
I couldn’t believe that my body was dealing with so many symptoms, yet not a scratch appeared on my body after I would collapse. It was quite funny and terrifying at the same time. I didn’t understand how I can be so sick when I appeared to be okay. Even though this was just the beginning stage, the doctors couldn’t identify what kind of disease I had. They gave me some painkillers and discharged me from the hospital as if I were due past my expiration date.
A year later, I started to have new types of symptoms. It felt like all of my teeth were going to fall out. Even when I was still, I had a sharp pain in my body as if someone was stabbing me with a knife. I became so weak. I lost so much weight that my body was withered because I had no strength even to pick up the spoon to feed myself. I was constantly dizzy.
I went to a general hospital to get a thorough biopsy and got the results. I suffered from two types of rare diseases, in which the inflammation had spread and was blocking off my blood vessels in my left arm. My diagnosis showed that my inflammation levels were 20 times higher than the average level. There was a need for immediate action.
I wanted to survive. My mom cried and pleaded to the doctors to do anything that it’ll take for me to live. I had to take steroids, but the doctors warned that my face would swell up. I didn’t care. I was just as hopeless and desperate as my mom, but I had to try my best to hide my emotions. If I accepted this situation as it is, I was afraid the pain would rush in like a mighty river, and drown me in it.
I struggled hard in comforting myself to believe that this was all just a dream. I had to do whatever it took to protect myself from giving in to the pain. That day, I learned that some lies were necessary. Deception required a strong will and belief to withstand any truth that comes knocking.
During this period, I was looking like a skeleton. Though the steroids helped me get through the day, even a little dose of it brought so much pain in my knees that I couldn’t sleep at night. Just like in the fairy tales, when a character’s body would grow after taking the wrong potion, my face and head were swelling up. I thought it was physically impossible for a human being to swell up this much, but this disease went beyond the worst of my imaginations. I suffered from social phobia and had to take time off from school. I stayed hidden in my room.
I searched online numerous times a day to see how I can decrease the dosages to my medications. Every time I opened up my laptop, on the wallpaper was a picture of me when I was twenty. I was so young and pretty, and now… I was a monster. I was horrified. I didn’t think it was possible for me to become myself again. But after time, I did start to get better.
I was still on my medication and strictly followed my diet. I eventually went back to school, and things seemed okay. But now, I developed the habit of worrying all the time. I was afraid that I would disappear from the face of the earth without any trace. I would wake up in the middle of the night, feeling around my stomach and knees to see if I still existed.
Even though I was Sohyun Baek, I changed and became a different person. It still meant the world to me to play music and the piano, but at the same time, I felt anxious the more I held onto it. Through this, I’ve learned another lesson. The more I held onto something precious, the more I felt nervous and anxious.