Monday, March 4, 2013
In sickness and in health
by Maria Kathrina Lopez Yarza
March 4, 2013
One of the nice things about being sick is that you can easily relate to other persons who may also be in a similar predicament. Most often, the support you give to each other becomes the foundation of a beautiful friendship. One of them is Ate Jeneth Catapang, whose family I really admire.
Jeneth has been happily married to Verlitos for 15 years and both their kids Vince (14) and Alexandra (12) have Osteogenesis Imperfecta (OI) Type 1 which they inherited from their father. According to oif.org, also referred to as “brittle bone disease,” OI is a rare genetic disorder characterized by fragile bones that break easily. Persons born with this disorder will have it for the rest of his or her life. Jeneth and her family has been active in advocating OI awareness to support and uplift families who are also experiencing what they are going through.
“It is not just the situation of being resource-poor that affects the families but more than anything it is the culture, the impact of society and how it affects the family's way of thinking. Realistic optimism is the key to positivity,” shares Jeneth.
Their family had been coping and managing the OI just fine until Jeneth suddenly obtained an illness herself. It started with repeated episodes of muscle cramps on her legs for months. Then she noticed the stutter and tremors. Later on, Jeneth was diagnosed with Young Onset Parkinson’s Disease (YOPD).
“It was hard but I accepted it, without knowing what I will go through and what my family would go through. My only worry was, would my family accept it as I did? How would they cope? Who would take care of them?” says Jeneth.
With the YOPD progressing as days went by, doing the things she did before has been a daily struggle for her now. She gained a couple of pounds mostly because of water retention. She would also often have scary-like jerky movements and excessive sleepiness. But those struggles have served as a wake-up call for her. She felt that she shouldn’t let her YOPD control her weight or her life.
“It should be the other way around. I should defy it instead! I have to, because Iknow my physical limitations will be there soon and I want to enjoy life and embrace everything around me so that there will be no regrets when the time comes that I cannot enjoy it anymore,” says Jeneth.
From then on, she decided that she would do everything she can in order to manage her illness and take control of her life despite her YOPD.
Let me share with you the article written by Ate Jeneth when she finally accepted her illness and decided to move on.
“While I was updating my Personal Data Sheet in the office, there was a question that caught me, 'Are you differently abled?' I honestly answered 'Yes,' because I was different from before I had Parkinson’s Disease (PD). I try hard every day to keep doing the things that I used to do. You wouldn’t know how hard I try because all you see is a bloated me late for work again for the nth time. Thank God for concerned friends who monitor my attendance for me, because honestly, I would always forget. I tend to forget where Ileft this and that, to take my meds on time, and a lot more. They say it’s the cognitive issues, affected by PD. I try to manage with the help of my friends, especially at the office. I couldn’t imagine if I can manage working without them. So I could say that my PD came at the right time, when I am still working with people who are always on my side.
I could say that my children’s diagnosis with OI, prepared me for Parkinson ’s dis
ase. When my son and daughter were both diagnosed with Osteogenesis Imperfecta, I felt that my world fell apart. But we had no choice but to face it head on and mature as a family. Although they both have a mild case of OI, the diagnosis work up was a nightmare especially for Vince who was diagnosed after consulting with 10 different doctors in a span of three months. Every prick on my son then was an unshed tear for me. I could not let him see me cry because he was holding himself up bravely for me. Years passed and as we continue with his treatment and infusions tapering off to every four months, we started to advocate for OI awareness.
Two years into the advocacy and then it was my turn. Last Sept. 8, 2011, I was diagnosed with YOPD at 36 years old. It didn’t sink in at first. But when the twitching, the tremors, and the dystonia became more evident, I had a bout of depression. My body (was) changing, and I could not control it. It was painful to see the pity in my children’s eyes. But suddenly the old me emerged back and I realized I have to help myself. I have to be strong the way my son did when he was diagnosed with OI. I have to be strong for them. Now I’m working out daily on the dance studio, dancing for coordination, dancing to sweat out the water retained in my body, and dancing because I am happy to discover that I can still do something physical and actually enjoy it.
When life suddenly crashes, it doesn’t mean you have to go down. You’re entitled to cry, get depressed, to feel down but it’s just for some time. You have to push yourself up and everything will fall into place. There are a million POSITIVEbilities that can happen. You just have to open your mind and heart. And don’t forget to keep the Faith! God will never give you something that you cannot handle."