June 7, 2009
By Anonymous

“Mrs. Ryle, please take a look at your daughter’s x-ray film of her cerebellum and compare it to a normal cerebellum’s x ray film. As you can see, her cerebellum is degenerating.” Dr. Wilson said. “Degenerate……?” Mrs. Ryle stared at Dr. Wilson. “I am sorry to say it, but I have diagnosed your daugther’s illness to be Spinocerebellar ataxia (SCA) which is a genetic disorder characterized by slowly progressive incoordination of gait and often associated with poor coordination of body movement, speech, and eye movements. Frequently, atrophy of the cerebellum occurs, and different ataxias are known to affect different regions within the cerebellum. As with other forms of ataxia, SCA results in unsteady and clumsy motion of the body due to a failure of the fine coordination of muscle movements, along with other symptoms.” Dr. Wilson said. Mrs. Ryle did not respond to Dr. Wilson; she stared blankly at him feeling speechless.

Mrs. Ryle picked up a diary in Erika’s room and started reading. “Why me? I am only 16 years old…” “What is the point of me living in this world?” “When I think of my future, my tears will drop uncontrollably.” Mrs. Ryle sighed with tears dropping down on her face.

This is March 2006 in Hong Kong. Erika looked at the clock which showed 6 in the morning. She screamed as loud as she could and said “Oh my god, it finally comes! I have been practicing and waiting for today for so long. I am pretty sure that my team will get into the final round of the senior girl basketball!” Two loud footsteps can be heard from Erika’s room. “Erika, What happened? What happened? Did someone break into your room? Don’t worry, daddy and mommy are here?” It was her parents rushing to see what was going on. “Oh, I am really sorry, I am just too excited about the basketball game. Did I scare you two?” Erika said with her face all red and smiled shyly. Mr. Ryle turned on the light and tried to hide his baseball bat behind him and said “No, No. You did not scare us at all, but please try not to yell next time honey!” Mr. Ryle pleased Erika with a funny face.

An hour later, Erika finished up her breakfast and got ready for school. She went to school with a big bag which contained her jersey, basketball shoes and etc. Not too far from her house, Erika said goodbye to her mom who was standing beside the door while her dad was preparing to open his store. Mrs. Ryle was walking back to the house and she heard a big noise. Instinctively, Mrs.Ryle turned around and saw Erika, lying on the ground and blood was all over her clothes. She ran toward Erika as fast as she could and yelled “Erika! Erika! Don’t worry! You are going to be fine. Ivan! Ivan! Erika fell!” Mr. Ryle heard the scream from his wife and ran out from the store quickly. “Oh my god, what happen?” he asked nervously. “Susan, unlock the car, go!” Mr. Ryle then screamed. Mrs. Ryle ran into the house and got the key to unlock the car and she said “Ivan, you look after the store. I will go to the hospital with her!” “Um, okay, but call me whatever happens!” Mr. Ryle replied. Erika could not stop her crying on the way to the hospital while Mrs. Ryle was trying to comfort her the whole way.

“Ivan, Erika is alright, the doctor said she needs stitches on her chin. Don’t worry too much. But just in case, I asked the doctor for a complete body check.” Mrs. Ryle said with a big sigh. “I want to go to the game, I am good now, let me go, please!” Erika cried. On the other hand, Mr. Ryle heard Erika’s crying from the phone and asked “Is she okay? Can I talk to her, Susan?” Mrs. Ryle then passed the phone to Erika. “Dad, Mom won’t let me go to the game, can you please let me go to the game? I’m perfectly fine.” Erika begged. “No, No. You can’t go to the game. You need to do a body check!” Mrs. Ryle cut the conversation. “Erika, let me talk to your mom for a second.” Mr. Ryle said. “Well, Susan, can you bring her to the game after the body check? You know how hard she has been practicing through out the whole season. At least let her go to the game, let her experience it.” Mr. Ryle tried to convince his wife. “Um…Um…” Mrs. Ryle hestitated. “Mom, please bring me to the game!” Erika begged. Mrs. Ryle finally spoke “Fine, you are together.” “Thank you, mom! I always say that you are the best ever!” Erika laughed. At the same time, Mr. Ryle laughed out loud on the phone.

After the body check, Mrs. Ryle fulfilled her promise; she brought Erika to the game. As soon as she stepped into the gym, the game was over. Her school won the game. Erika ran to her teammates and hugged them. “Good job! Girls! I am proud of you all!” Erika shouted. “Where have you been, Erika? What happened to your chin?” Erika’s teammates wondered. “It’s a long story” Erika replied. She felt ashamed for missing the game and said “Sorry, coach! I fell down when I went to school today. My mom went to hospital with me.” Erika’s coach stared at Erika and asked “What happen to you, Erika? You have fallen down a lot of times during practice recently.” Mrs. Ryle heard the coach. Her heart was pounding from what the coach said. “I think I am just too tired recently, but I will attend our final game, sir!” Erika said. “You better come!” Her coach replied cheerfully. “Okay, Girls! Good game today! Our final game is scheduled next week Thursday. We’ll have our practice this week……” Erika thought to herself, “Oh no, that is the same day as my appointment for my body check up.” She looked at her mom realizing her mom was looking at her too. “Mom, can I go to the game on Thursday, this is our final game!” Erika asked in the car. “I’ll think about it.” Mrs. Ryle said. Even though Erika kept begging her mom, Mrs. Ryle was not paying attention to her anymore. “She fell down a lot of times recently…?” Mrs. Ryle asked herself. “The light is red! Stop! mom!” Erika yelled as loud as she could. Mrs. Ryle stepped on the brake as quickly as she could. Luckily, she was able to stop the car in time. “Mom, are you alright?” Erika asked. “I am fine, let’s go home. Dad is waiting for us.” Mrs. Ryle replied. “Dad, we are home!” Erika shouted. “Oh honey, let me look at you. Are you alright? How was the game?” Mr. Ryle asked. “We won the game!” Erika replied, and unhappily continued, “But the final game is scheduled on …and mom….” “Oh, you must be hungry now, daddy bought you some seafood noodles and it is in the dinning room,” Mr. Ryle said. Erika went to the dinning and looked for her food. She could not find it and she asked “Dad, where is my food?” “Let me show you, honey” Mr. Ryle said. “Dad, where is the ……” Mr. Ryle gestured Erika to keep quiet and whispered “I will deal with your mom, don’t worry.” Erika grinned and whispered “thanks dad” in return.

Two days after Erika had her body check up, Mrs. Ryle got a call from the hospital. “Hello, my name is John Wilson from St. Thomas Hospital; may I talk to Mrs. Ryle please?” Dr. Wilson asked politely. “Yes, this is her.” Mrs. Ryle replied. “Hi Mrs. Ryle, I am Dr. Wilson. I have looked at your daughter’s x-ray picture. I think there is something you and your husband should know.” Dr. Wilson said with a serious tone. “What happened to my daughter?” Mrs. Ryle asked nervously. “Can I meet with you and your husband tomorrow please?” Dr. Wilson disregarded Mrs. Ryle’s question. “S..sure…” Mrs. Ryle complied. “Okay then, I will see you tomorrow at one o’clock in room 1314 at the St. Thomas hospital.” Dr. Wilson said. After Mrs. Ryle hung up the phone, she became disoriented. She walked slowly to her husband’s side and told him about the phone call from the hospital and the appointment for tomorrow. “Why would he want to talk to us?” Mr. Ryle asked. “I don’t really know, he didn’t tell me much in the phone.” Mrs. Ryle replied. “It’s going to be okay! Look at our kid, how healthy she is right now!” Mr. Ryle said optimistically as he tried to comfort his wife. “I am back! Mom, is there any food to eat? I am so hungry right now!” Erika returned from school. “Oh, honey! How’s the exam? Is everything doing okay? Did you fall again?” Mrs Ryle asked. “Mom, the reason why I fell was because I was too tired. Don’t worry about it! I think I did okay on the exam though.” Erika replied. “HAHA, that’s good! Let’s go celebrate tonight! What do you want to eat, Erika?” Mr. Ryle asked. “Yeah, I want to have Japanese food tonight!” Erika replied with excitement. “Of course. How about you go back to your room to put down your stuff, and then take a shower, okay?” Mr. Ryle said. “Yes sir. Haha.” Erika replied. Afterward, Erika ran upstairs as Mr. Ryle hugged Mrs. Ryle and whispered, “It’s going to be fine” into her ear.

The Ryle family had a fun night last night. However, time flied. Mr. and Mrs. Ryle walked toward Dr. Wilson’s room and they knocked on the door. “Come in.” Dr. Wilson said. “Oh, you must be Mr. and Mrs. Ryle. Please have a seat.” Dr. Wilson said. Mr. & Mrs. Ryle slowly sat down on the chairs and wished Dr. Wilson would explain everything to them. Dr. Wilson then put 2 x-ray films on the screen, “On the left is your daughter’s x-ray film, the other one belongs to a normal person. As you can see, your daughter’s cerebellum is becoming smaller and smaller. Unfortunately, I believed that your daughter has a disease called Spinocerebellar ataxia (SCA)……..” Dr. Wilson explained. Mr. Ryle slapped on the desk as hard as he can and shouted, “There’s no way my daughter would have this deadly disease! There must be something wrong in the picture, please double check it!” Dr. Wilson looked at him, and Mr. Ryle came to his senses and realize that there should be no mistake in the report since Dr. Wilson is highly reputable. Mr. Ryle slowly sat down on his chair and he could not say a word. Mrs. Ryle could not stop crying. “I really understand the situation you are facing right now, but I think we should tell Erika about her illness.” Dr. Wilson said. “No, no, we cannot let her know.” Mrs. Ryle said. “Yea, my little daugther cannot handle the truth…” Mr. Ryle said. “Exactly, it is because she is only sixteen years old now, she has dreams which she hasn’t fulfilled yet. We don’t know how much longer can she run freely, talk normally or write regularly. She still has the time now. We must let her know about the illness and allowing her to enjoy as much as she can.” Dr. Wilson explained. Mrs. Ryle did not say anything after she heard what Dr. Wilson said. But Mr. Ryle still strongly disagreed with telling Erika that she had a deadly illness.

On their way home from the hospital, they did not say anything to each other. Not because they were angry, it is because they didn’t know how to face their little daugther Erika. “Wow, where have you been?” Erika asked. “We just went to the grocery store.”Mr. Ryle said while Mrs. Ryle was trying to hide behind him and cover her red eyes. “I am going upstairs now. I am really tired from the basketball practice.” Erika said. “Okay, we’ll call you when dinner is ready. Take a nap, honey!” Mr. Ryle said. During the dinner, Erika had a weird feeling about the silence in her family. “Did something happen?” Erika asked. “Of course not..” Mr. Ryle answered. “Oh yeah! Your final game is coming up. Tuesday, right? Mom and I will go watch it. After that we can go to the hospital for the body-check report!” Mr. Ryle said. “That’s sweet, thank you mom and dad. It will definitely be a good game.” Erika said. Mr. and Mrs. Ryle were smiling the whole way through dinner, but who knew their hearts were aching in silence.
The day for the final game has come. Erika was very excited and she could not fall asleep. It was one o’clock in the morning. Erika suddenly heard noises from her parents’ room. She tip-toed to her parents’ room and tried to listen to what they were talking about. All she could hear was “Spinocerebellar ataxia.” She went back to her room and turned on the computer. She looked the term up in the internet. First thing came up showed that Spinocerebellar ataxia is a deadly disease which causes problems to body and eyes movements. Falling suddenly, shaking hands were the typical initial symptoms of this disease. “Erika, are you still awake?” Mrs. Ryle knocked on the door and asked. Erika shut the computer off immediately and answered “yes mom, I am too excited for tomorrow!” Erika did not know why she would lie to her mother, but she did. She also could not stop thinking about the disease she might have!

“Defence! Defence! Good work, girls!” Mr. Ryle yelled during the basketball game. “I cannot imagine that our daugther who is running back and forth on the court, trying her best to get the championship title has a deadly disease.” Mr. Ryle said to Mrs. Ryle with tears. There was twenty seconds left in the game, Erika’s team was leading by 15 points. All the players were ready for the referee to blow his whistle. The game finally ended, Erika came up to her parents and asked them to bring her to the hospital for the report. Mr. & Mrs. Ryle were shocked about Erika’s request. They finally brought her to Dr. Wilson’s room. “Hi, you must be Erika, nice to meet you. I am Dr. Wilson.” Dr. Wilson said. “Doctor, do I have Spinocerebellar ataxia?” Erika asked very slowly but sharply. Mr. and Mrs Ryle were surprised by Erika’s question. Dr. Wilson looked at Mr. Ryle when he was staring at Erika. “Yes…” Dr. Wilson answered. Erika’s tears were out of control. Mrs. Ryle hugged her in order to comfort her. “Do I still have a future? Will I able to get marry? Why me? Doctor, I m only sixteen years old…” Erika uttered in an unusual calm voice. Dr. Wilson could not answer her questions anymore, because he didn’t know how he should answer her.

After they got home from the hospital, Erika ran to her room and shut the door. She did not care about how many times her parents knocked on the door. She looked to the sky and asked herself “what is the purpose of her life if it is this short?”

Life went on. Erika was turning 19 years old, and she could no longer run in the gym, nor throw a basketball. She could no longer speak and write normally. She could no longer study in a regular school. “I have no future, and I have no hope. All I can do is waiting for the day my heart stops beating.” She read this letter from a person who was also very ill in a magazine. She picked up a pen and tried to write a respond in her diary. In fact, Erika has been picking up the pen more than anything else, even though she had diffculties to write. She developed an interest expressing her feelings in writings. “It is not a big deal if you fall. Put your hand on your chest. You should be glad that you are still alive. It is not who you are by having a long life but what you do that defines you!” Although it was only a few sentences, they took Erika nearly twenty minutes to finish. “Erika, you’re writing your diary again?” Sarah asked. Sarah is the editor of a magazine for patients with terminal illnesses. She knew Erika through a meeting which was hosted by the hospital. “Erika, actually I had a question for you for a long time. Would you mind if I put your diary in the magazine since your words are so encouraging?” Sarah asked. Erika did not say a word, she just nodded her head. After Sarah published Erika’s diary entries in her magazine, Erika received a lot of heart-felt letters showing her the support she has gathered. Mr. and Mrs. Ryle felt happy for Erika. Most importantly, Erika felt happy too. She began struggling with the purpose of life when she was 16, and she has found the answer now.

Erika walked through her life full of tears, love, laughter and wisdom until the age of 25.
Her smile is like a mark which stay within everyone’s heart.

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