Fooled in a Most Beautiful Way

A year ago this evening, May 4, 2012, Adam Yauch - better known as MCA of the Beastie Boys - died in New York of a head and neck cancer. Brandon learned of it the next day, May 5, which was exactly four weeks before Brandon's own death of head and neck cancer as it turned out, and he posted the following...

“So sorry to hear about MCA. Anybody who knows me knows The Beasties are my favorite. From what I hear you fought very bravely against your cancer.

“Hopefully I can be as brave as you.

“Gotta change my profile pic out of respect.”

MCA Day Facebook page - Father's Day 2012

Last year a few fans organized the MCA Day held in New York City several weeks after Adam Yauch's death. To honor the Hip Hop star and spread the word about MCA Day, they developed a Facebook page. Somehow I found their page after Brandon's death and saw a photo that had been posted of Yauch holding his daughter, Tenzin Losel. The vise surrounding my heart clenched, and I contacted the administrator via the personal Message "button." I told them about Brandon's love of the Beastie Boys and his battle with the same disease. I attached the self-photo of Brandon wearing his favorite Beastie Boys t-shirt that he'd taken and posted as his Facebook profile pic on May 5th. I explained that Brandon also had to leave a young daughter and that he would not be here to celebrate his first Father's Day the following Sunday.

On Father's Day I received this reply to my Message. “Our thoughts go out to your family and especially Morgan today. We are very sorry for your loss. Take a look at the wall today on our page. Today we pay respect to Brandon.” Posted on the MCA Day page was the side-by-side photo of Brandon's Facebook profile pic and Adam Yauch holding his daughter. It was a beautiful way to honor Brandon on his first Father’s Day.

Several cities across the USA held MCA Day on this first anniversary of Adam Yauch’s death. In Chicago, Brandon’s brother Joe was invited to talk about Brandon and the Foundation we’ve established in his memory to raise funds for the research that will cure these head and neck cancers. She’s Crafty, the female Beastie Boys tribute band sponsoring MCA Day Chicago, is donating some of the proceeds to Brandon’s Foundation, which is another beautiful way to honor Brandon.

Brandon's brother Joe at MCA Day Chicago 2013

Brandon and Adam Yauch never met during their earthly lives, yet they shared a special journey. I’m grateful Brandon was able to find a mentor in how to live and die in Adam Yauch.

Weeks after Brandon’s June 2^nd death, I found an interview with MCA's fellow Beastie Boys Michael Diamond (AKA Mike D) who said something about Adam’s Yauch’s last weeks. His words rang so true. I read his quote and thought of Brandon’s last months, weeks and days during which he continued to joke, continued to think of others, continued to plan for the future, even as his body continued to fail him. Mike D said of his long-time friend Adam Yauch “He had us fooled in the most beautiful way.”

I cannot imagine a more perfect way to state it. Brandon had us all "fooled in the most beautiful way." And what a gift that was.

Happy Birthday Christina!

Brandon's Christina

Today, May 3rd is Brandon’s wife Christina’s birthday. Last year at this time, their daughter Morgan was growing like a weed, smiling and beginning to move herself around. Brandon was still working, although he was considering taking a medical leave from work due to some of the respiratory symptoms he’d been experiencing on and off since late March and the anticipated effects of a new course of radiation for brain mets. Brandon was obviously getting weaker and thinner, yet none of us knew that he had so little time left with his beautiful wife and daughter. Still, they celebrated Christina’s birthday and appreciated each day.

Brandon’s last post to his Facebook page was May 29, 2012 and this is what he wrote (and posted with the photo above): 
"So, after one week I am losing my personal assistant. Chris has been by my side helping with anything I might need. I know I couldn't have made it this far. Thanks babe, you are the best!"

We are so glad Brandon and Christina found each other. And our family is so blessed to have her as part of it – always…

Lost in Space

Why are so many people afraid to say the word(s). The words are “die” and “death.”

I’m back to taking umbrage with the things people say – even though I know they mean well, even though I know others who've experienced the death of their baby don’t mind it when someone says the same thing. Today’s rambling is about the use of “lose” and “lost.”

We didn’t “lose” Brandon. We were there when he inhaled and exhaled for the last time. We heard his wife thank him for giving her the privilege of being the one to feel his last heartbeat. Although we couldn’t follow him, I feel fairly certain that we didn’t “lose” him. If anything, I have a sense that he is “found.”

At the same time, we (our/Brandon’s family) have definitely experienced a loss more vast than the blackest black hole in space and its gravity relentlessly pulls us all. If anyone is “lost,” it is each family member who misses him terribly.

Be that as it may, please DON’T EVER suggest to me that Brandon “lost his battle” with cancer. At least don’t say it in my presence, unless you want to piss me off royally.

As I wrote the day after he died – and the word is “died” for that is what happened to his body – “Brandon did not lose his battle with cancer – it was not even a tie. Yes, it claimed my beautiful boy's body but he totally beat it emotionally. Another 'spot' somewhere, he'd take a few days to regroup and then it was 'Chemo? Radiation? Uncomfortable tests or procedures?' He’d say, 'Bring 'em on. Let's get 'er done!' He quietly dealt with cancer treatment side effects that affected what and how this gourmet cook and foodie could eat and drink. It affected his tastebuds and his ability to swallow, but he adapted with occasional comment yet without complaint." Treatment caused thick, uncomfortable mucous, which in turn added to the loss of taste and difficulty swallowing. Again, he’d comment – and only if necessary because someone wanted him to eat or drink something he’d enjoyed in the past – but never with complaint. The cancer and related treatments robbed him of energy, which affected this athlete's stamina to run, kayak, ski, rock climb, camp, skydive, cycle, etc., yet he adapted and kept going. He kept working and meeting his sales quotas through the beginning of May last year. He joked about chemo brain. He joked about "playing the cancer card." He joked about qualifying for a handicap parking sticker. He joked and kept us laughing and loving.  

Brandon kept doing as much as he could until, with on/off low-grade fevers and a cough that wouldn't go away, he just couldn't. He showed cancer it could take his body, but it could NOT take his spirit. He showed this f'n disease that it could NOT have his dignity. It could NOT deprive him (and us) of his sense of humor. It could NOT rob him of his essential vitality.

And what a stupid, stupid disease. In overwhelming Brandon’s physical systems, it took its own “life,” for cancer cannot live on its own. Cancer did not win; Brandon did not “lose” some battle.

Cancer NEVER beat the authentic Brandon. 

The end of 7 weeks of radiation - holding his radiation mask

Radiation burns, a portocath for chemo below his right shoulder and that Brandon smile...

Brandon died -- he didn't "lose" and he isn't "lost." I look at my current Facebook cover and profile photos, which are of Brandon "celebrating" the end of seven weeks, 5 days per week of radiation and of the radiation burns that he kept covered as best he could because he didn't want sympathy or pity. (These photos are up now because April is Head & Neck Cancer Awareness Month, and I want everyone to know a little bit of what it means.) I look at these photos of someone silently suffering yet smiling through it all, and I cry. I can't believe he's really gone physically. It's simply not possible. I miss him. I miss him.

What is a “Bereaved” Mother?

I don’t know how I’m supposed to be. I’m not strong, yet people tell me I am. They don’t know me. Perhaps, I don’t know me.

I am so broken. So broken. Am I such a pretender that some think I’m strong when I am very far from it? I don’t mean to pretend, but maybe I do. I don’t try – I don’t like – to wear the pain of this grief for all. I don’t think it’s everyone’s business. But also, I’m not always in my pain. I’m shocked at how it can compartmentalize – sometimes on purpose and sometimes without thinking.

I just miss him. I miss who he was as my little guy and who he became as an adult. I miss my Brandon and every big and little thing that means. I want him back and I know that can’t happen.

I just miss him so, I ache…