As per today, the COVID-19 pandemic has already affected 209 countries, more than 1.6 million people, and taken more than 95.000 lives.
We all kind of live in a bubble where we think we’re indestructible until something like this happens.
::: WHEN THERE’S NO TIMETABLE
Everyday I hear news on the radio about COVID-19.
A constant reminder,
we are fragile,
time is not an infinite resource.
Tragedy and disease comes like a hurricane.
I remember 3 years ago,
only weeks after I got engaged,
I suddenly got diagnosed with a terminal illness,
late stage incurable brain cancer, DIPG.
I was told I have at best 2 years left to live.
However, since then until today,
I have had a really good 3 years.
While many little kids who fight the same disease lived less than 9 months.
I see little deaths all around me;
I see the changing of the seasons;
I see the trees and their leaves that change;
I see loss.
Life is brief.
We are mortal.
Lately, I feel myself slipping health wise a lot.
I realize I don’t have as much energy as I did before.
I probably won’t be able to see everyone else’s lives flourish,
because mine is coming to a premature halt.
So, I take each day as it comes.
I prioritize what I care about and what is important to me.
I am very conscious of how precious time is.
::: WHEN THERE’S LACK OF CONTROL
Living with DIPG is a mental battle.
There are things I can’t deal with at the hospital.
It’s not drugs, and it’s not chemotherapy.
It’s my life that I can’t control anymore.
This disease is bigger than me,
and it forced me to accept a reality,
I am dying.
Dying from brain cancer,
there is darkness, and fear, and everything else.
But, I’ve discovered the truth that makes me feel really alive.
I’ve found the God of truth, whose Word is truth, and who Himself is true and may be trusted because of His covenant faithfulness.
I’ve found the answers to my questions:
Why I exists?
What’s the meaning of my life?
What’s my destiny?
The world suddenly felt like it is brighter and more colorful.
All the things that used to bother me, don’t bother me anymore.
None of it matters.
I’m seeing the good bits in life.
My life goes on and it has meaning.
::: WHEN THERE’S NO CURE
I am writing this article now,
I am still alive.
But, I don’t know when the lights are just going to go off, and that’s it.
It’s not about me,
it’s really about my body.
It’s the tumor in my brainstem.
My doctor and medical team can make the effort to minimize how it affects me,
but they can’t cure it.
We all are born,
and we die sooner or later.
Me – a little sooner.
I am not so scared anymore.
There’s something more out there,
a bigger story.
I believe to be invited into the gate of the eternal as a gift,
I believe love is waiting for me when I’m going to die.
I believe I’ll leave to a better place.
My faith brought me the peace in the midst of the painful aspects of dying.
I think it’s much more harder for Tobias and my family to witness me going through this ordeal.
Despite me dying from DIPG,
I consider myself an incredibly blessed person.
Dying and death is something that is inconceivably scary.
But, I can deal with it.
I have found the resource to cope.
Through Christ Jesus,
and through Tobias,
I am more resilient than I might have expected.
::: COURAGE IN LIVING AND DYING
Dying from DIPG,
I could just be depressed all day thinking about how I’m hurting.
Or, I could stay positive,
and make my time meaningful.
So when my time ends,
I can be satisfied.
I’ve done my part.
I love, I give, I serve.
I write and share my stories.
I hope my stories would help somebody somewhere.
I hope that my impact continues to live on.
Death is not a finite thing.
we see countless people die,
we see many little kids fighting for their life.
Our days are numbered.
Yes, life is like a roller coaster ride,
but there’s always hope,
so, take life a step at a time.
Don’t take everything for granted.
Appreciate people who love you,
who value you outside of your visible success and accomplishments.
Be grateful for things that you have.
Live a life of meaning,
by deliberately practising forgiveness, kindness and generosity.
And, for you who are dying,
you’re not alone,
we are facing this together,
though our life will be complete,
but it will not be over.
Death is not the end.
Let’s find wholeness in our faith in our loving God.
May strength, love and peace be with you.
“Truly, truly, I say to you, whoever hears my word and believes him who sent me has eternal life. He does not come into judgment, but has passed from death to life.”
John 5:24 ESV
“Jesus said to her, “I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?””
John 11:25-26 ESV
“that this is God, our God forever and ever. He will guide us forever.”
Psalms 48:14 ESV
::: UPDATE ABOUT ME
2 Years 11 Months Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
On April 15th, I’ll have the 30th round of Avastin. And, I’m scheduled to do an MRI.
I hope for good results.
For now, I increased to 3 mg of dexamethasone daily. It doesn’t slow down my symptoms from worsening. There are no new symptoms, but all my symptoms get more intense. 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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10 Replies to “HOW TO LIVE WITH DYING”
Your strength continues to amaze me & you give me strength in your time of need. Amazing! Not to mention those delicious meals-would love to try one! I just need to make it & not tell my hubby what is in it. He’s an odd bird with food! Huge long, social distance hugs to you ♥️
I’m happy to hear that my stories inspired you. Thanks 😊.
Haha, just tell him it’s magic inside the food that makes it delicious 😋
Stay safe and stay healthy 😘
You are one of the most courageous and inspiring people I’ve ever come across in my life.
My thoughts and prayers are with you for today’s MRT. May it leave some room for hope and some more time with Tobias.
Yes and amen 😊! Thanks Elisabeth 💕
Stay safe and stay healthy 🤗
I love your cooking! Very much looking forward to the eggplant and tofu dish recipes 🙂
Thanks Julia 😊
Recipes are coming soon 😁
Please stay safe and stay healthy 🤗
Your strength and positivity are simple amazing. You will be in my prayers. ❤️🙏🙏🙏
Thanks Joni 😊. Stay safe and stay healthy.
Tears still paint my cheeks and blur my vision from the sorrow of losing my 5 year old to DIPG just a few short months ago. Thank you for sharing your story and your experience. Our little boy was barely 4 when he was diagnosed, and unable to express what he was experiencing verbally. It helps me to understand what he was experiencing to read your posts. Thank you.
I am so so sorry 😐
I want to deep hugs you.