Titien and I have a mantra that we’ve been following at least since her being dignosed with DIPG: live in the here and now. What sounds like a hackneyed phrase from the self help literature is actually meaningful to us. We have realized how valuable the time we have left is.

We have made conscious decisions not to spend time thinking about the past. Or about the hypothetical case that Titien would not have been diagnosed with DIPG.

Nor is it worth thinking far into the future when the prognosis is two years at most. If we had goals, then it was in the short to medium term at most.

Celebrating Christmas once again. Making the family reunion to Korea. Meeting the friends in Barcelona. Seeing Israel. We have done everything. The final goal was Titia’s birthday on June 24th. Now we don’t set goals anymore.

But how do we live in the here and now? A year and a half ago I put it like this:

One extreme is to live each day as if it were the last. The other extreme is to ignore the disease and carry on as if nothing was wrong. My third way is pragmatic, reflective. I take our time together much more consciously. Everything takes on meaning. Her third way is spiritual. She reads the Bible and writes about her faith.

Now that she has less and less time left, I don’t know exactly what it means to live together in the here and now. Aren’t I there enough for her when I have project meetings on Zoom during the day and work on texts for short films about science communication?

Do I waste our time together when I play around with my mobile phone the breakfast table? Or when I listen to podcasts over headphones? Or is this the compensation I need to avoid becoming depressed or crazy?

Does time become more and more valuable the less you have of it, or does the value of time remain the same once you become aware of its finiteness?

When I took care of my mother for her last year and a half with pancreatic cancer, I had a rescuing shore in sight long before she died. I could imagine what would happen afterwards, what we brothers would do with the house, that I would move to Karlsruhe.

Now with Titien, there is no land in sight. In the here and now, there is only water. I notice how the wave builds up behind me. Eventually it will break, and then I get washed ashore somewhere. I’m a good swimmer.

Original article published here:

13 Replies to “HOW TO LIVE IN THE HERE AND NOW? (by Tobias)”

  1. You are a strong man. I wish that I had words of wisdom to share but all I can think of is that you will get through this. Life can knock us around. Life can feel like an out of control car at times. You’re doing great with all that’s going on.

    Peace & love,

  2. Thank you for inspiring me and rest assured, my faith will not fail. Anne, thank you and your family for everything you’ve done so far. I’m in this to win this and no devil in hell is going to stop me from winning and achieving my destiny. God bless you all and I’ll be in touch. Be on the lookout for a message. Mwaah to you all, especially “Ma” πŸ˜πŸ˜˜πŸ‘πŸΎ

  3. Thank you both for sharing this journey with us. I hope you can feel the love and prayers from all of us you have touched by including us in your lives.

  4. Brother you are amazing. The love you are showing is a model for all of us. It is Christ like and glorious. I love you bother and continue to pray for a miracle. I will live in hope that you would see this miracle. Stay strong.

  5. You’re an amazing man and husband. You’re giving every ounce you’ve got. This is beautiful!
    I won’t stop praying for you or your family. I’m a DIPG mom so I completely get it. I’m so very sorry. It’s not one bit fun or easy !πŸ’™πŸ™πŸ™πŸ’™πŸŽ—πŸ’›πŸŽ—πŸ’œπŸ’ͺπŸ»πŸ’œ.

  6. Thank you for sharing this journey. I am praying for you and Titen everyday.πŸ™ You are an amazing husband to Titen, and I have no doubt that God planned it just that way. You are both equally blessed. Titen, thank you for your shining example of God’s Love and His faithfulness. Prayers for extra comfort at this time.πŸ™β€οΈπŸ™. Hugs to you both from afar.πŸ€—

  7. Please give Titein a hug from me and God bless you both at this time o want to tell u both that you are probably the 2 most inspiring loving couple ever prayers for you for strength as God takes her on this beautiful journey home talk to her til she takes her last breath o was in home health and hospice for many years the hearing stays for 10 mins even after they pass you are both in our prayers

  8. You and Titien are such a great complement for each other. Such a wonderful testament to open communication, dedication and love. I can’t imagine what you are both going through; you are both very strong through these terrible circumstances. Peace and love to you both. πŸ•ŠοΈβ€οΈ

  9. Hi Tobias, We are thinking of you two and I’m very sure that wherever this wave will wash you ashore there will be people to help you up and help you heal as much as possible. You two have inspired so many people and spread kindness in many ways and if you need support and kindness it will find you, too. I wish I’d live closer. My girls would love to stop by and drop off bird and duck food and flowers they find out in nature. We talk about the two of you a lot and look at your pictures together. Hope you can feel the love we send. Bettina with Jeff, Ella, Hanna and Madison.

  10. You’re AMAZING, Tobias! Looking at how you guys live your life, the faith that Titien had, the journey though tough but very very meaningful, an inspiration of true love to people around you!
    Have faith!
    We’ll always pray for the Lord to shower you with great people, shower you with strength, the comfort and warm love that He’ll always wrap you with! You guys have been a blessing surely!

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