As per today, the COVID-19 pandemic has already affected 210 countries, more than 2.5 million people, and taken more than 171.000 lives.
This morning I saw videos on YouTube:
– Frontline medical staff is stressed-out at the hospitals and scared of bringing COVID-19 to their families;
– People are losing their confidence in some of their institutions;
– Many loved ones are dying alone from COVID-19;
– Many of the poor are facing a dilemma of dying from hunger or risking the infection;
– Many people lost their jobs already;
– Millions of people are frightened as to what the future is going to bring.
Then, I opened my Facebook,
I saw parents losing their beloved children to DIPG.
My heart sank.
Loss and grief is unpredictable and uncontrollable.
It pulls us down.
It traumatizes us.
I think grief is about what we have had and lost,
and sometimes it’s also about what we never got to have.
I remember in the past,
I had beauty, health, status, a career,
but I didn’t feel loved,
I had no joy,
I lived in fear,
I harmed others,
I was co-dependent on an alcoholic partner,
I numbed myself from my own pain,
I grieved my life everyday.
Until 3.5 year’s ago,
I met Tobias.
He helped me go through my weaknesses and failures,
and transformed me.
My soul started blooming.
For the first time in my life,
I was brave to be myself,
and I was happy.
Unfortunately, that was brief.
Only weeks after he proposed,
DIPG started to rob my vision.
But, no matter DIPG,
we still got married.
I think that’s the decision we’ve made.
We wanted to be together.
It has been 3 years post biopsy and we’re still happily together.
So much has occurred lately,
my symptoms are worsening.
I’m in my flat everyday,
not because of the pandemic,
but in particular because of my symptoms.
I struggle with walking and keeping balance.
I may go out for grocery shopping once a week, supported by a stroller,
but now it’s very hard for me to do.
I never feel lonely.
Because of my love, Tobias, and my life.
Tobias makes me laugh a lot,
he says beautiful things that make me happy.
He is a wonderful husband.
I never have doubted that he loves me.
This is what DIPG can’t take from me.
It may able to take away my physical well,
but it won’t able to take away my wholeness.
Throughout my journey,
people asked me how I keep strong during such a difficult time,
I don’t think I can give advice.
But I can share what helped me get through this difficult process,
in which everyday was uncertain,
to realize that I’m still here,
means I’m alive,
means I’m loved.
No matter what the doctors told me,
no matter what the diagnosis and the prognosis.
I am only going to focus on two things:
life and love.
If I’m alive there’s still hope.
And if there’s still hope,
I wasn’t going to allow any negativity to destroy it.
we are all in the process of dying.
So, leave behind a beautiful story of yours.
Cultivate a sense of love,
where you live, where you work, where you play.
Commit to a life of love and connection.
As long you’re still alive, there’s still hope.
I don’t know how many days I have left.
My wish is God will give me more years to live it out.
Because now I’m a better cook, haha.
My journey with DIPG has been characterized by a lot of minor miracles.
It illustrates my life day to day.
DIPG indeed changes my life.
But it doesn’t change God’s destiny for me.
There’s enough grace for today.
It started 3 years ago on the hospital bed,
I encountered the Holy God,
a fresh identity came up on me,
a daughter of the Almighty,
I am loved.
God wanted me to be whole not only well.
my soul prospered.
I know who I am.
I know why I am in this world.
I know what’s the meaning of my life.
I know my destiny.
I know I am loved.
I walk the path of wholeness that continues to this day.
I realized that it is vital to fully receive an identity as whole and be accepted in Christ.
God crushed his Son for me,
to make me whole again.
How precious is His love.
I realized that I was created for a loving connection and relationship with Him.
sometimes we grow comfortable in our mess.
In some shape, form, or fashion,
we form an identity around our pain, victimhood, or bitterness.
This identity settles into the cracks,
and we see ourselves through the lenses of our brokenness:
I’m an addict;
I’m a victim;
I’m not safe;
and so on.
Jesus beckons us to wholeness,
He can bind up our brokenness.
Let’s invite Him to heal our fractured souls.
Don’t devalue your soul.
Be a whole person,
because we’re born to be adorned.
Then, we can live in the freedom and the abundance of His promises.
Then, we can create our beautiful life story even in the midst of misery.
“Jesus answered, “Truly, truly, I say to you, unless one is born of water and the Spirit, he cannot enter the kingdom of God.”
John 3:5 ESV
“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead,”
1 Peter 1:3 ESV
“But to all who did receive him, who believed in his name, he gave the right to become children of God,”
John 1:12 ESV
::: UPDATE ABOUT ME
2 Years 11 Months Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
Today, my doctor called me with my MRI results. Apparently it is stable, but same like the MRI from 2 months ago, again she saw a progression of nodes in my cerebellum, but still suspects it as a pseudo progression (dead cells from previous radiotherapy). As I complained to her my symptoms are worsening quite fast, she is planning for my 3rd round irradiation. I’ll update you soon when the dates are fixed.
For now, I increased dexamethasone to 4 mg daily. It doesn’t slow down my symptoms from worsening. There are no new symptoms, but all my symptoms get more intense. It pretty much limits everything I want to do. Every movement feels heavy. I have difficulty speaking, my voice sounds nasal, I have difficulty walking, head pressure, double vision, balance issues, bowel issues to the point where I can’t control my bowel, tingling pain on my left arm, weakness of my right arm and many fits of laughter.
Please go to “My Medical History” for more details.
Thanks for keeping me in your prayers 🙏
PS: Thank you for reading, commenting and sharing my posts.
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