There's a physician in Canada who was diagnosed with chordoma in 2007 and after being disease free for over a decade, the monster hiding under his bed made an appearance... a monster all patients, spouses, and parents all fear, no matter the cancer. The article is here, and I found it to be an excellent read. Besides being an physician who became a patient, he's an excellent writer. Ed mentioned seeing Nick Vujicic speak, a man born with no arms or legs. Nick asked that question of his audience... "why are you living" offering his unique insights.
Ed wrote wrote "I came across an absurd comment at the time of Stephen Hawking’s passing: “He lived his entire life with a death sentence.” I thought, in reaction: “Don’t we all? Isn’t the leading cause of death being born in the first place?".
Moms and I also had the privilege of hearing Nick speak in 2015, I wrote about it here. I saw him speak again last year and my friend Bryan, who knows Nick well, told me a brief story. In 2016 Madison saw Nick speak again Loma Linda. After Nick's powerful speech, he caught a glimpse of Madison and whispered to one of his assistants something to the effect "I know her, can you ask if she'll come talk to me?" Keep in mind Nick speaks to huge audiences globally. In 2015 Madison was bald having just finished chemo when they first met. When saw her again, Madi had a bushy head of short curly hair in 2016 and was in his audience. Wow! Anyway, Ed re-posted Nick's 'why are you living' questions with his insights, link above.
I received a number of phone calls and many texts on Friday the 4th... people expressing there condolences on the anniversary of Madison's passing. One of the text conversations was with Cindy, stepmother to Rodger, who was Madison's boyfriend from 2012-2016. Rodger now lives down south, but his keepsakes are in Westlake at his parents house. Rodger was a champion pole vaulter and has lots of pictures, ribbons, trophies, and other memorabilia. Cindy and Richard were forced to evaluate when the fire swept through. As they were scrambling to pack up and bail, they called Rodger to let him know they were evacuating. Rodger thanked them, then called his dad right back, asking them to pack his 'Madi' box, things he kept from their relationship (and apparently from his current live-in girlfriend : )
I chose not to mourn January 4th and celebrated it with fond memories but also sense of my new normal, one of which was a Hope Depot run with a project in the backyard. It's more important for me to celebrate her sunrise May 20th, 1995 than her sunset last year. She would want that.
Ed wrote he was given seven years to live, the then-average chordoma patients have. He noted that "time is not something that any doctor can "give". Ed also shared something else that irks me, Madison too: besides 'all things happen for a reason rubbish, we need to stop saying that someone lost their battle with cancer, and he posted a link here. Noted in the John McCain article, "cancer is not a war" and the dangerous myth that "death is the result of a personal failure to fight hard enough". They called bullshit, me too. Madison was insistent that we never say that, which moms and I won't. I had an opportunity to practice a couple of Saturdays ago: I went to the RC airport to reacquaint myself with the field and the people. I haven't been there since 2016 and several people asked me how Madison is doing. Locked and loaded, I said "she's forever 22, unfortunately the disease ran it's course, and she's f***ing awesome" as I tapped the palm of my hand on my chest over my heart. I could see it in their faces, like they should not have asked. My impression is that mortal death remains something other than the inevitable for a lot of people.
So reading the blog that Ed wrote here, his insights along with his impression of seeing Nick speak, our seeing Nick speak, and him remembering Madison, pondering Nick's question to himself and challenging his audiences... "why am I living?". I think I've found my answer (and thanks Shug... this is because of you)
On Friday January 4th, Colleen was here to pick up Bailey for the weekend. She seemed spent and in all honesty, I was too. Colleen said she received dozens of texts expressing condolences. Colleen commented that each one felt like a piece of a scab being ripped off. Huh, me too. Ironic that I sent a someone a condolence email on Friday morning, the 4th. Gerry and his wife Susan are dynamos in Chordoma-UK. The disease ran its course with Susan on January 5th 2018 in London, which was January 4th here, so basically the same day. There is no right or wrong protocol of what to do, or not to do unless you try and sell me God's plan for Madison. For me, moms too, Madison's passing-on was an epilogue... a reminder of the her end. Hell, I reminded Gerry in London that I was sincerely sorry and sent my condolences, but moving forward I'm change my approach.
I'll find out when Susan's birthday is (not was), and send her a birthday card. I'll thank Susan for her wisdom and tenacity founding Chordoma-UK, leading patients to proper treatments as well as research efforts across the pond.