When I turn back to stories I’ve written, Tobias was always there in my story. He is the story of my life.
Walking my life with DIPG, there’s joy and there’s sorrow, Tobias is the one that always stands by me, to make me be strong, and helping me to hold on through it all.
So, I decided to use this article to ask you to ask Tobias anything, so you’ll get to know him better.
Here are already some questions for Tobias I got.
Q: ARE YOU AFRAID? ABOUT WHAT? WHY?
I am afraid of Titien suffering, of her feeling miserable and losing quality of life, and of losing her. But I am not afraid right now. The future is uncertain and I don’t spend too much time thinking about it, I prefer to live in the here and now.
Q: HOW DID YOU FEEL WHEN YOU FIRST HEARD ABOUT TITIEN’S NEWS?
It was a feeling between shock and numbness. It physically felt as if my stomach was constricting.
Q: WHAT HAVE BEEN THE PROCESSES FOR YOU TO DEAL WITH TITIEN’ S CONDITION?
One extreme would be to live every day as if it was the last. The other extreme is to forget about the disease and live as if nothing has happened. We are somewhere in the middle. We live day by day and take things as they come. Frankly, not much has changed after I came to terms with her diagnosis two and a half years ago.
Q: HOW DO YOU DEAL WITH ALL?
I am fairly robust mentally and that certainly helps. I like my job and whenever I need to travel and spend more than one night away from home, Titien comes with me. I work reduced hours (80%) and I need sports to decompress. I love road cycling.
Q: HOW DO YOU HELP TITIEN TO BE MOTIVATED TO LIVE?
I listen and I try to be there for her as much as possible. The largest part of her motivation comes from herself within, from her way of dealing with the situation. She is the strongest, most wonderful person I know and beautiful both inside and outside.
Q: HOW DO YOU MOTIVATE YOURSELF TO BE OPTIMISTIC?
I am an optimistic realist. With Titien as my wife I get all the motivation I need.
Q: HOW DO YOU DEAL WITH STRESS BY BUILDING AND MAINTAINING THE INFRASTRUCTURE AROUND TITIEN’S CONDITION?
I don’t perceive taking care of Titien as stress. We have certain routines in place, such as taking care of the feeding tube in her belly, or going for treatment to hospital every two weeks.
Q: HOW DO YOU DEAL WITH UNCERTAINTIES AND WITH UPS AND DOWNS RELATED TO THE SITUATION?
See answers above. I don’t think too much about the future and I don’t dwell in the past. We live day by day and take things as they come.
Q: I STARTED TO HAVE PANIC ATTACKS SINCE MY MOM STARTED TO GET SICK. HOW DO YOU TAKE CARE OF YOURSELF WHILE BEING THE SUPPORT FOR TITIEN!
See answers above. I love my work, which takes my mind off things. I talk with Titien, I write and I do sports.
Q: WHAT IS ONE THING YOU’VE LEARNED THAT HAS SURPRISED YOU ABOUT MARRIAGE?
I think every marriage is different. So what has surprised me about MY marriage is how harmonic and peaceful we live together. I always hated fights but assumed they would just be normal in a relationship. They are not and they just don’t happen between us, because we talk, and if in doubt we assume good intentions first and ask before getting angry.
Q: DI YOU BELIEVE IN CHRIST? IF NOT, WHY NOT? SINCE YOU HAVE SEEN SO MANY MIRACLES IN TITIEN’ LIFE. WHAT DOES IT TAKE FOR YOU TO BELIEVE?
I don’t believe in Christ. I understand the importance of religion and acknowledge that it is very much human to be a believer. However, a lot of the answers religions give are in conflict with my rational, scientific world view and I just prefer testable hypotheses.
Q: AS A NON-CHRISTIAN, COULD YOU SHARE THE EXPERIENCE OF MARRYING SOMEONE WHO IS AN ASIAN AND A DEVOUT CHRISTIAN?
I married Titien, and not “an Asian” or “a devout Christian”. Being with her allows me to see the world through her eyes and this is beautiful.
Q: WAS MACHST DU AM WOCHENENDE?
Radfahren, Zeit mit Titien verbringen.
Q: WHAT ELSE WE CAN DO TO HELP AND SUPPORT YOU?
Thanks for asking. Continue liking and commenting on Titiens articles and Facebook posts. This shows me that you are there and that you care, and I won’t hesitate to reach out if and when I need help.
Friends, thank you for participating in ask Tobias anything with me. If you have any further questions, you can always post it in the comment box, or pm me. Perhaps I’ll do another round of ask Tobias and Titien anything.
“If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. If I give away all I have, and if I deliver up my body to be burned, but have not love, I gain nothing.”
1 Corinthians 13:1-3 ESV
::: UPDATE ABOUT ME
2 Years 7 Months Post Biopsy
Midline Pontine Glioblastoma/DIPG Grade IV
On Wednesday, December 5th, I will receive the 21th round Avastin.
My symptoms are pretty much the same.
Please go to http://titien.de/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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