Our Sun Below The Horizon

My Xuper Power disease

Chapter 10

Nakatitig ako sa labas ng bahay. Ilang distansya sa aking kinatatayuan mula sa aking bintana ay tanaw ko ang papalubog na araw at kulay kahel na kalangitan.

Napakapayapa at mahanging hapon ang aking nasisilayan mula dito sa aking silid. Of course I was on a certain distance away from my window where sunlight could not touch me, even it was a special window made for the sunlight not to pass through. After all it's better to be safe than sorry. How much it would cost us if only a tiny amount of sunlight touch me.

I remember the day when my parents told me about XP and what it does to my body. Hindi ako naniniwala sa kanila. Because I was afraid to face the fact and the reality.

"Kathy, there is something me and your dad wanted to tell you." Mum said. She was crying when she was trying to explain me about my disease. She tried to hold back all her tears but it keeps coming out. I know this must be serious

"You have a disease Kathy." She said hesitantly. Dad tapped her back and I could see tears from dad's eyes but he was trying to hold it back. I was confused and struck by mom's words. I was left hanging. I have a disease? May sakit ako? It doesn't sink too fast. I feel lost and drain. DISEASE? I don't know that much about that word at my very young age but i know it was a terrible word.

I tried to be strong. I never cried when mum and dad talked about XP. I actually wiped her tears running down from her face when she tells me about it. "It's okay mum." I said in a calm voice. I was child of course and I don't know what is happening and how serious this confrontation could be.

"Disease." I uttered. "Mum, what is it? How bad could it be?"

Mom just cried at that time and could not speak for more. All I can hear is her sobbing. Dad decided to stepped in and explained things that mom hardly can't say. He gather all his strength, bumuntong hininga at kinausap ako. It leaves us a quite room

"Kathy...you remember the day we used to hangout every Sunday morning at El Juanico resort?" Dad is trying his best to sound happy and to lighten up the atmosphere. He's not better at faking smile 'coz tears were visible in his eyes.

"Yes Dad. I do remember. All the fun and memories of us in that resort." I said in an excited tone. "Oh...I also remember how you and mum teased me. You'd always dragged mom at the deep part of the sea then mom would act out like she was drowning. I always cry when it happen...Huh if only you know how mad I was to you that time. But of course you never let it happen, you'd always lift me up and make fun of me, then back home you'll treat me an Ice Cream. Hahaha." I was happy as I remembered those moments.

Mom laughed a bit as she heard my rants. She gently caressed my hair and tears fell down again. I could hear dad sobs right now and I saw how a tears fell and left his eyes.

"Honey." He paused. Sadness in his voice touch my heart. "We could not do it anymore. There is no more weekend hangout outdoor. Cause now, right from this moment you will never go out of this house" Napaangat ako ng mukha sa aking narinig. Things are getting serious now.

"You remember the time after we came back from swimming. You get sunburns, blisters and dry skin all over your body that we needed to rush you in the hospital. It is because of the disease your body possess."

So there are reasons why i have such a scaly skin and blisters when I was a child. It's because of this disease mom and dad refers to.

"You have XP or Xeroderma Pigmentosum. Its a disease that will make you stay away from the sun. It will make you suffer Kathy. This disease is lethal, it could kill you if you stay long under the sun" He said.

Napabuntung hininga ako sa aking narinig. No more outdoor activities. No more swimming. This could be boring. But as a child I'm not a rebel and I follow orders from my parents.

"Hindi ka na papasok sa Central Academy anak. Dito ka na sa bahay mag-aaral. We will do everything to give you quality education." Finally mom talked again. She finally stopped crying then they both hugged me tight.

This only means no more school, no more adventures, no more weekend hangout. I was thinking how could I survived if things gets boring. But no, things did not turn in what i expect it to be, because I found books and music. Binuhos ko lahat ng oras ko sa pagbabasa at pakikinig ng kanta. Hanggang sa nasanay ako sa ganitong buhay.

Alone.

My World change a lot since then. People I used to talked in this subdivision started to fade out individualy. They leave me even my childhood friend whom i played every weekend. They don't know about my case at least that is what mom used to say.

I even get lonelier when dad leave us. He was the one who spoils me with everything but he died in a car crash. It was the most heartbreaking moment of our life, nang pumanaw ang haligi ng aming tahanan.

Before he died, he leave us an inheritance from his family where me and mom gets my medical allowance. They were very supportive and caring for all I know.

When I turned twelve pinayagan na ako ni mama na lumabas at gumala sa gabi limited only sa subdibisyon namin. I tried to disobey once when I tried to see what's more beyond this gate of our Villa. Matagal ko nang hindi nakikita ang labas. But mom found out about it. She scolded me hard that all I did was to cry. Mabuti nalang nandoon si Ate Linda she comforted me. Hindi ko na ulit ginawa pa iyon. Hindi na rin kasi ako sumuway pa sa mga utos at bilin niya.

It was a total darkness outside now and there is so much for me to tell about XP. How complicated it was and how to stay alive I guess.

Well my condition is complicated, 25% of those who have this disease develops abnormalities of the nervous system manifesting a progressive neuro-degeneration which makes us vulnerable, it's like we are fragile things. To be handled with care. Because of our condition it could shorten our life span to 29 years or it could be much shorter or a lil bit longer depending on XP patient case.

As an XP patient I'm not the one with bloodshot eyes, telangiectasia or spider veins. I dont have scaly skin now, irregular dark spots or blisters. It's because I have taken all the prescriptions and recommendations by my doctor. I undergo medication and surgeries to maintain my healthy body and to prevent neuro-degeneration. I always have sunblock, lip balm, a NASA cool suit which blocks 99.9% of sunlight bought at 2,000 USD and I wear it when I needed to go to the doctor. My parents spent so much money to gave the best life and the best body to maintain. I was thankful for them a zillion times for that. Minsan naawa na rin ako kay mama sa lahat ng ginagawa niya para sa akin.

Pero may isang bagay na hindi nawawala sa isipan ko and I was very open with this idea. But I'm afraid... afraid when the time comes. Where I have to leaved from where I stand. Where I have to say Goodbye to my loved ones. Where the time comes where only left for me to say is thank you and I love you. I am afraid when the time comes where tears and smiles were mixed up until only tears were left. It saddens my heart.

There's a sudden knock on my door.

"Kathy, si ate Linda mo ito."

"Pasok po Ate Linda."

"May naghahanap sa iyo sa baba"

"Po, sino po?"

"Bumaba ka na ng malaman mo."

I looked on my wall clock it was 7:03pm. Sino kayang naghahanap sa akin? Wala naman akong inaasahang bisita ngayon. Agad akong sumunod pababa kay Ate Linda. I was shookt when I saw the man waiting for me. It was the man in my dream.