Monday, August 13, 2007

An Insight Part I (The Early Years)

At such a tender age, I already knew how it was like to suffer. To be different.
I was born it seems just a normal, healthy baby. Yet, as I grew, different illnesses would come up.
Draining my strength, my family's, our finances, everything.
Knowing later, that most if not all of them were manifestations of Marfan's Syndrome.
A rare congenital disorder that affects the connective tissues.
Yet despite these troubles, my parents made sure that even with our problems, we would get to have the best of what they could give.

My brother and I were sent to one of the top schools in our city.
When it came to material possessions, we had the things we wanted and needed.
We were loved, pampered and cared for.
I had all the love and security a child could want and need.
But the world outside my little sanctuary of a home proved to be a more different thing.

The first manifestation of this disease ever observed in me were my flat, bow-legged feet.
I had to wear shoes that double as braces, orthopedic shoes, but I hated it.
Another alternative was to wear my shoes inverted. Putting the left shoe on the right and the right to the left. Of course people thought I just made a mistake. Sometimes well-meaning strangers would even come up to me and put on my shoes for me, the right way.
I always had to explain in my own childish reasoning that its what my mama taught me.
And explain about my feet and all that. They just smile and say "Oh, I see!" and off they go.
One gets used to those kinds of little annoyances, sometimes I say people are not so bad after all.
With perseverance, a few fights on putting on those bloody shoes, wearing inverted shoes, bearing all humiliation, that problem was eventually corrected.

The second problem that came up was my eyesight.
I couldn't see clearly. I had to bring the pictures so close to my face, I almost had to kiss it.
My brother kept asking me if I couldn't see. My mother heard him and became distressed.
I was starting out kindergarten then.
One time, the teacher asked me to answer something on the board. I couldn't!
My mom observed that I kept taking two steps forward until I was already so close to the board, then I answered.

After that incident, she decided to take me to an opthalmologist.
Every doctor she went to, gave the same findings. It wasn't good at all. My lens were dislocated, I was nearsighted. My vision was fluctuating and blurred.
The doctor said I may need eye surgery as the only means of me being able to at least see.
My mother did not consent to the idea. I was still three years old! Yet, already considered medically blind.

Then an international team of eye specialists visited the Philippines.
My doctor recommended me to be checked, since I was a rare case.
Thanks to Project Orbis they gave me hope. They did not recommend surgery for I was too young. They advised me to take some vitamins and I could remember these eye drops were given too.
My eyesight was improving. By age of five I was able to have glasses.
I was ecstatic! I could see! But my glasses were so thick the eye grade so high that literally I looked like a frog with bulging eyes whenever I put them on.

Before I reached the age of five, I was also hit with another rare disease, life-threatening this time. I almost died. It was called Kawasaki's disease.
At that time my doctors didn't know what it was, they thought it was a severe case of amebiasis. They did all sorts of lab tests, they almost had to cut me open just to figure out what the matter was. It got so bad that some relatives even thought that it had a supernatural cause. Faith healers were brought in as an act of desperation.
Then, one doctor found the answer. I spent thirteen days in that hospital.
Soon, it proved to be a sort of pattern. Whenever I'd be hospitalized I always seem to spend thirteen days in confinement.

By the time I was nine, it was discovered that I had scoliosis.
The discovery was made accidentally.
I feel off a chair and had fractured my right arm. When they took x-rays on my arm the doctor saw a little curvature of the spin so he suggested that another round of x-rays be taken to confirm his suspicion.
When he had the x-rays, he was shocked that the curvature was already so severe, being more than fifty degrees, it formed an S shape.
Surgery was again suggested. Which again my parents did not consent to.
Besides, the cost was staggering! At that time they told my parents it might cost about half a million pesos. We didn't have that much!
So I had to wear Milwaukee braces to help stop the deformation of the spine and to correct it.
This was the start of my nightmares.

Before reaching ten, it was also found out that I had a heart disease. Still connected to the Marfan's syndrome. My aorta was dilated and I had a leak in my left ventricle. So far, my doctor did not advise yet for me to get surgery for this particular problem. If things get worse, it might reach that point.

Yet, even with all these things plaguing me. I still turned out to be a good individual.
Many thanks to my parents for this.

4 comments:

Berserker said...

Your body may be failing, but your spirit couldn't be stronger. That's something few people can manage to maintain.

Ankit said...

these kind of things just makes u wonder if we are all created equal.. which we r not.. but at these times only you actually realise the value of the people who matter.. and your body might not be so strong.. but the soul makes up for it..
wish you health n loads of smiles..
take care

mini-cakes said...

Hi,
I just came across your blog. I found out not long ago that I'm pregnant. My husband has Marfan's. We're discussing whether or not we should keep the baby. It is a hard decision-knowingly pass on a genetic disorder or end the pregnancy. We're leaning towards keeping the baby, but have worries about if the child will inherit the condition (50/50 chance); do not want our child to suffer unceccesarily throughout life; not to mention the emotional and financial issues that come along with the possibiity of having a Marfan's baby. You and your family sound very loving and courageous.

mini-cakes said...

Hi,
I just found out I was pregnant not long ago. My husband has Marfan's. Because of this, we always thought we would adopt. The pregnancy was unexpected. We're discussing whether or not we should keep the baby. It is a tough decision. We're leaning towards having the baby, but we have many concerns: will the baby inherit the condition (50/50 chance); what will the severity of the physical problems be; along with the emotional and financial issues associated with having a Marfan's baby. Parents only want the best for their child and do not want him/her to undergo uncessary suffering. You and your family sound very loving and courageous.