My Verfication Post: @beyonddisability/ Luzon/ Aug 31, 2021

2개월 전

Blessed day everyone!!!!
I am Rafael Gregor O. Ursal, 33 yrs old from Antipolo, Rizal, Philippines. In 2002, I was enrolled in the University of the Philippines, Diliman campus, Quezon City, taking up Mining Engineering, but I was unable to complete my course of study. Sadly, I inherited a rare disease that runs in my family. Among our clan, I was the eighth to acquire it. AND, this disease caused my permanent orthopedic #disability

It was a very mysterious syndrome ( a collection of different diseases). Medicines were so expensive and treatment as well. The symptoms manifested in me right after my mother died of the same symptoms. I was 14 yrs. old back then. Poverty hastened and aggravated my case leading to a lot of secondary diseases and infections. But God was so good. After 10 yrs of battling with the mysterious symptoms finally, we come up close to a diagnosis, I was 24 then. But still, my disease is not well confirmed. My diagnosis falls, considering the symptoms, into two different syndrome GITELMAN SYNDROME AND BARTTER SYNDROME. These two syndrome exhibits overlapping symptoms thus making it hard to differentiate which of the two I do possess. The only way to finally pinpoint is to undergo gene testing which can only be done abroad ( my doctor told me it can be done in U.S. or U.K.) but this is so expensive. As of now, I am only undergoing symptomatic treatment Meaning only the symptoms are being treated. GITELMAN AND BARTTER SYNDROME are two diseases at the kidneys but of different treatment.

From 2004 up to 2015, I was battling for survival. Medicine was in scarcity because of poverty. We can't afford it. Thus I was isolated from society and in prison to the most unexpected cell of all, my own body. In bed, is where I am being fed and bathe for many years. Depression reigns, anger persists, blaming roars. Bullying was rampant. I was miserable. I was hopeless. I was alone. I cried so hard. But I a have dream. That one day I will be back, obtaining again what was all stolen from me. I will be running again. I will dance as I used to do when I was a child. I will be performing on stage again. I will regain my lost youth.

I tried so many ways how to deal with this gift/curse. I fight as much as I can but even warriors get tired. I do feel weak at times. I can't remember how many times I told myself that I can't fight anymore. I always fall. I felt I am a failure. But life never run down of giving me reasons to go on. I don't know how I manage to stand up again and again and again. All I know is that I don't want to be a burden to my loved ones for the rest of my life.

Being sick is not just a personal war inside and outside. It also affects the people around you most especially your family. When I cry they cry more. When feeling in despair, they feel hopeless too. So I must go on. I must win this life. This was given to me for a major reason. That I am still figuring out.

Countless struggles. Shed so many tears. Until one day back in 2007 I met people who helped me not just financially but also spiritually. Starting from there from people to people I was able to meet the answers to my questions...to my pain. Fast forward to 2010 finally I undergo two weeks of continuous medication and laboratory. And was so close to determining my real disease. As hope was in your grasp, it slips away again so rapidly. That was the time I learned that my disease has no cure. It's a lifetime expensive disease. It is progressive. One day I will be spending the rest of my life back in bed again. Sooner than I get old. Those truths were heightened after I realize that the test I needed can only be done overseas. All the smiles soon faded. I was depressed once again. I gave up.

At the time I was feeling worthless, feeling helpless. I realized that there were people who feel more sorry than I am. They can't afford to see me at my worst, it was my family, my friends who stayed in my rough years.

I realized that life will not give you all that you want and you cant have all that you want. Life is continuous learning. One greatest lesson I learned from all of these experiences was: Don't be miserable for things you don't have instead Be grateful for what you already have and start from there.

So that is what I did. Back in 2014, I find ways on how to start an online MLM. Being isolated and going back was a real transition. It was a struggle. Learning an online MLM was tough. Little by little I was able to fund my medicines from my small earnings. In 2015 because of continuous medication, I was able to go out alone. From bed to wheelchair to adult walker. I aim for physical progress. This may be nothing to other people but for me, it was a dream come true. It's a major achievement. Fast forward to 2018, looking back and typing this story now makes me feel I am so blessed. I may not have an awesome life but In my heart, I'm shouting that I made it. My life will be a continuous struggle because of my case but I will fight with a smile.

Looking back at all those humps. holes and traps in my life... I realized that for all those battles I wasn't alone. I have my family with me. I have loyal friends. I am meeting new friends. And God never left me. He was always there beside me. They all shed tears when I cry. They were with me.

Thank you will never be enough.

I don't know how long I will be living this life or how I can stand the pain of my syndrome. With the time left I want to have a fruitful life. A meaningful one. I am not perfect I still commit mistakes, I do still stumble. I do still figure out ways on how to fund my medications and monthly laboratories. Yet I am learning this game, a game called life. In my death bed, I will whisper that I fight a good fight.

All of us have our own silent wars. We all have our own battles to win. We all have our own stories of struggles. Always remember, we are all heroes in the eyes of our people, they can be your child, your parents, or friends. We are all winners in our own respective way. We all deserve to live and be happy and make others happy.

We only have one life so let's make the most out of it.
May #steemit be a place for me to inspire other people with my story. May this platform be a way to meet new friends to encourage and will encourage me. May this new form of social media be a venue of generosity, positivity, and encouragement.
May this be a new way of expressing who we really are.
I came here not just to inspire, bless, share and give hope to others but I am here to be inspired, to be blessed, to receive hope from no one else but by the community most especially you who are reading it right now :) :) :)

Thank You #SteemitCommunity,

Sincerely Yours,
Rafael
#BeyondDisability
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