Paths

"I don’t know if the future will remember me, but if it does, may it never see me as a victim, but as someone who moved forward with courage."

- Paulo Coelho, The Spy

I started 2018 with this quote from my Freedom day planner by the above author. I also started it with much apprehension, worry, and doubt for what the future holds. For what the rest of the year had in store for me. But today, on the last day of 2018, I am ending it proud to have done as what the quote says.

I moved forward with courage.

Even with the fear, even with the doubts, even with the feeling of hopelessness, of being lost, of being stuck. I moved forward anyway. "The landscape changes, the people change, our needs change, but the train keeps moving. Life is the train, not the station." (Paulo Coelho in Aleph) 2018 had a rough start, and it unfolded with both many amazing surprises as well as unexpected challenges. It was a different kind of adventure, and as I reflect on it now, I can say that I truly enjoyed it.

I may not be able to share everything, but here are some of the most notable highlights of this year for me.

#EndNF

I have neurofibromatosis type 2 (NF2). Last year has been the most challenging year yet for me in having this progressive neurodegenerative disorder, with my hearing decline that led me to harboring those negative feelings I described above. How do you move forward with courage when everything seems so bleak?

But 2018 surprised me with so many things that I wouldn't have otherwise experienced if I do not have this thorn in my side.

Meeting Elice and her family

Just a week into January, I was given the opportunity to meet someone who is just like me, someone who is trying to reach out and be reassured that they are not alone in this fight to #EndNF. The nervousness and hesitation I felt before meeting the dela Cruzes was replaced by joy and gratitude. It made me realize that the challenges that we face may be difficult, but we do not have to pretend to have it all together and wear a Cloak of Invincibility. These very difficulties train us to be better individuals and equip us with the tools to help and uplift others who may face similar circumstances in life.

--------------------------------

Guesting in Metro Sabado, Radyo Singko 92.3 News FM with Alex Tinsay and Izza Reniva-Cruz

Halfway through the year, I was asked again to do something I normally wouldn't do given my introverted nature: to speak in behalf of the NF2 community as a guest in a live radio show.

What? I'm not fond of public speaking and I cannot hear a whole conversation without having to ask "Say again?" one too many times. Amazingly though, the acoustics in the studio was just perfect, and having my NF friend Ara with me was also a blessing. Mr. Alex Tinsay and Ms. Izza Reniva-Cruz were also patient and lovely hosts. It was a small thing to be a part of this show, but I truly hope in some little way we were able to reach out and inspire others dealing with rare disorders and diseases out there.

--------------------------------

Krizelle Researching NF2. Oil on Canvas. 2018. 30" x 24"

Rachel Mindrup is a professional artist and Resident Assistant Professor at Creighton University in Omaha, Nebraska, and mother to Henry Mindrup who has neurofibromatosis type 1 (NF1).

Her son's diagnosis has been her motivation to put together her series of portraits called "Many Faces of Neurofibromatosis (NF)". In Rachel's own words, "Through this series of paintings, I am the conduit, transforming genetic complications into something secondary and portraying the individual personalities first. Using social media as a connection, I hope to raise funds, educate, and ideally find a cure for NF."

I am honored to be a part of this portrait series and I salute Rachel for the work that she does in contributing to the cause to #EndNF.

--------------------------------

Accelerating Gene Therapy Research for Neurofibromatosis Type 2

Through the years, I have been looking and looking for a place, a group, an organization, anything or anyone who shares the same goal and purpose as I have: to help find or develop a definitive cure or treatment for NF2. "It is not easy, but I am not alone in this fight." I have said. Truly, there are plenty others out there who have been searching like me. This year, however, a brave and determined NF2 warrior in the form of Nicole Henwood, MD, took the step and created NF2 BioSolutions, a non-profit organization solely dedicated to seeking a cure or preventive treatment for NF2 through cutting edge research and next-generation biomedical technologies. I am excited to be a part of this group and look forward to working next year with this amazing team to bring an end to NF2.

--------------------------------

Mr. and Mrs. Atlan in their home in Paris, France.

Just as I started 2018 meeting an NF2 family, in November I was given another chance to be with another family also dealing with NF2: the Atlans. I will say this again: Mr. and Mrs. Atlan are the sweetest and purest people I have ever met, and no I am not even exaggerating. They welcomed me, a stranger from halfway around the world, into their humble home and treated me like one of their own. From home-cooked French meals, to showing me around Paris, to sharing stories about life and family and everything else, it really became a home away from home for me. At the end of it all I was in tears saying goodbye to this couple whom I can't believe I have only met the day before. It inspires me to treat others in the same kindness they showed me. It also makes me excited now for opportunities in this coming year to meet with people within the amazing NF2 community.

"Life is the Train, not the Station"

After the events of last year I really doubted that I would ever have the chance to travel again. Call it a millennial thing, but yes I believe experience is far worth more than material possessions. And getting to experience the world by travelling is truly a gift, a chance to learn,to discover, and to push yourself beyond your comfort zone.

2018 was indeed full of surprises, because contrary to what I expected, it became the year that I visited the most countries than I ever had in my whole life. And even got to travel again on my own!

Eight nations: Japan. Singapore. Thailand. Turkey. Austria. Czech Republic. Germany. France. Granted, two of them are technically layovers, but no matter how short or long my stay had been in these countries, I made sure I still got to appreciate what each one of them had to offer.

What I learned though is that no matter how beautiful a place may be, it is the connections with other people you meet along the way or be reunited with during the journey that makes it far more special and memorable more than anything.

I look forward to the adventures that 2019 will bring.

Like Music, Like Magic

Christmas has always been a special season for Filipinos. When September 1st rolls around every year, you can be sure to already see holiday decorations abound and start hearing Christmas tunes being played everywhere in the Philippines.

Just in time for our early holiday celebrations, the Christmas season this year was made even more special when David announced in early September that he will soon be releasing his second Christmas album, Winter in the Air. What a delight! I have always been so excited to play the Christmas from the Heart CD on full blast in our stereo as we put up our Christmas tree every year. New Christmas music from David and a US tour in December to watch out for got me even more excited to celebrate the season.

Having thoroughly enjoyed watching David's Christmas concert videos and going through the highlights of his past Christmas tours, I hoped to also have the chance to hear his Christmas music live one day. Little did we know that David had another surprise up in his sleeve: a holiday benefit concert right here in Manila to support the local charity Mabuhay Deseret Foundation.

It is the ultimate Christmas gift! It was a truly special event and set apart from his previous concerts here. Being able to hear David give his testimony about Jesus Christ and his birth, the reason for the season, to finally hear David's Christmas music personally, and to contribute to such a meaningful cause to help the largest surgical charity here in the Philippines was certainly a wonderful way to celebrate Christmas and is definitely a highlight of my year. 

--------------------------------

"The future has become the present, and every dream will have a chance to be heard."

- Paulo Coelho, Manual of the Warrior of Light

The uncertainties will always be there. But what this year taught me was that the important thing is to move forward in spite of them. Because every step that we take illuminates another small detail in the big picture and helps us to gain a little more clarity to guide us in the next step that we can take.

The future me of pre-2018 has now become the present. 

And now I'm ready to take on a new path.

Cheers to 2019!