But what do you say when you don't know what to say?
You just say it, I guess.
My brother has a brain tumor.
I mean, how else do you put it?
This is my brother John.
When I was 5, John and I were playing in the sandbox. I was pissed at him for putting rocks in the sand, and he was pissed at me for putting Barbie in the Tonka truck. I said to him,
"I dont' give a..."
I paused, and then dared to say it:
John promptly jumped up, and ran inside to tell on me. I had my mouth washed out with soap. I can still taste it. To make things worse, we got the extra special treat of going to McDonald's for dinner that night (just think, it was a treat back then) and not even a vanilla milkshake could get the taste of soap out of my mouth. I think John felt guilty for telling on me, because he had no idea how severe and painful the punishment would be. Or how much he would have to listen to me bitch and whine about it. He patted me on the back.
And that's how big brothers are. One minute they're throwing you under the bus, and the next minute they're making sure you're OK.
Our younger years had alternating moments of fighting like cats, and then laughing hysterically. Riding somewhere in the car could either be complete torture:
"He touched me!"
"No, she touched me!"
"When are we gonna get there?"
"He stuck his tongue out at me!"
Or a contest to see who could keep a straight face the longest while the other made funny faces. It usually ended up with stuff flying out of our noses because we were laughing so hard, and our dad threatening to:
"...pull this car over right NOW, and you can walk to Grandma's!"
Which always shut me up because I had no idea how to get to Grandma's, and was usually wearing very uncomfortable shoes.
Then we went through a phase where we literally wanted to kill each other.
Then we became friends.
It started right around the time when we both realized that our parents were going to split up, in our early teens. The funny thing is, even though we spent the rest of our lives apart (he with my dad and me with our mom, and then in different states), we've always been very close.
We haven't spent nearly enough time together. There was always going to be that time, you know, in the future, where we would have some sort of camping trip together, and hash out all the family bullshit, and have this totally immersing bonding session.
In no way could I have imagined that the totally immersing bonding session would take place in a hospital room after a meeting with a neuro-oncologist.
But we did. My brother, his wife Chris and I had an incredible roller-coaster of a week together. We laughed, cried, held hands, ate chocolate, and thanked god for the incredible ICU nursing staff at Evanston Hospital. My sister-in-law, her family, my parents and myself had a constant rotation so that my brother would always have someone in his room with him. I learned how to sleep on a waiting room couch, and the quickest route to the cafeteria. Thank goodness they had Starbuck's coffee.
John & Chris
Then when he got to go home, I busied myself with cooking, tidying and running errands so the two of them could relax. I cherished seeing them in their home. Sitting together and having a meal. Browsing through Christmas catalogues. Looking at all of the things that make them happy - their books, music and movie collections. Pictures of friends and family. Carefully placed model airplanes make with painstaking detail by my dad, and given as birthday gifts. Art made by nieces and nephews, in places of honor on the refrigerator door. I wanted to absorb it all, make it a part of a memory so that when it came time for me to go, this is where I can picture them from a distance. My brother's guitar in the living room, and drum set in the basement. The piano in the front room.
on their wedding day
We celebrated John's small victories, like being able to sleep for a couple of hours, or take a shower, or take a shit. Then, too soon, he had to go back to the hospital, in an ambulance, with a debilitating headache. This time, a different facility, and the care was not so nice, or professional. The doctor assigned to John was something out of a movie - on the worst ego trip imaginable, and not one shred of empathy. His nursing care was lacking in decision-making abilities and any type of follow-through, which resulted in us watching my brother going through the most gut-wrenching, heart breaking pain I've ever witnessed in another human being. My incredible sister-in-law Chris completely (and rightly so) lost her shit on that doctor, and read him the riot act that he deserved. I stood right next to her and backed her up as well as I could - not that she needed it - mostly by nodding and saying, "yeah."
getting ready for an MRI
Then my week was up. I had to say goodbye to them in the hospital. Thankfully he went home the next day, under new orders for levels of steroids that he'd been taking to quell the rate of swelling in the brain due to the tumor.
He's halfway through his radiation/chemotherapy treatment now, and goes through daily ups and downs. As the tumor reacts to the treatment, it flares up and pushes on different areas of the brain, causing different side effects. One day he went completely blind for two hours. His taste buds have gone wacky and some things that he really wants to enjoy - like beer - have a bitter or "off" taste. He'll have numbness or pain in his hand and wrist, which for a musician is particularly frustrating. He takes his chemo in the form of a pill, in the evening, and he says that in the middle of the night, he can feel his body reacting to it. It's hard to sleep.
We try to make sure to talk every few days. We check in with each other, the three of us, and talk about what's going on with him physically, what he was able to to that day, we talk about my kids, and about our parents and how well or not-so-well they are handling the situation. But mostly we just talk.
I have to say, my brother is an amazing person. He'll be the first one to argue against that. He'll say what an asshole he's been over the years to various people, or that he should've done this, or shouldn't have done that. But I don't see that. Maybe it's the nature of being the little sister, but I have always, ALWAYS, looked up to my brother.
- He's an amazing musician - he started out playing the trombone in Junior High, then, listening to big-band records,
- taught himself how to play drums (starting with one snare drum and a spare piece of carpet to pound on),
- then, by monkeying around with various pianos, whether it be at church, school, or Grandma's house, taught himself how to play piano,
- then had to have an incredibly patient woman (Holla, Sue Schiller) re-teach him to play properly and read piano music,
- then went on to play guitar...he's one of those disgusting people that can play pretty much any instrument you put in his hands.
- He worked his ass off,
- put himself through college in his early 30's,
- finally married the love of his life (took you long enough!)
- and has been co-owner, teacher, and all around badass guitar specialist extraordinaire at The Music Room in Palatine Illinois, with his partner of 20 years.
His biggest joy as a businessman is helping a kid get set up with his first guitar. Finding the right fit, and seeing their faces light up when they strike the first chord. He's goofy as hell, a kid at heart, really, and just loves what he does. That's why everyone around John loves him.
The evidence is in the hundreds and hundreds of emails, texts, cards, posts on his Facebook page, and on the Caring Bridge site that Carol, his business partner and longtime friend, set up for him. Carol put out the call to their wide-reaching community of friends for a Christmas ornament drive, since John and Chris had no energy to haul out decorations, and on Christmas Eve, when the family was away at my cousins' house for family celebration, Carol and her boyfriend Rick, along with a host of volunteers,
set up a Christmas tree with hundreds of ornaments sent from near and far with love from everyone they knew, and cards with messages of hope and cheer for John's health and recovery. It was truly inspiring.
In closing, I'd like to add one more note. Our family recently suffered a loss in the death of one of our cousins. Second-cousin to John and me, he was just a bit older than us, and all in all, a pretty cool dude. Upon hearing the news, my brother wrote this:
Sometime between Christmas and New Year's, my cousin Paul died. Don't know the circumstances, don't know anything really. What I do know is that I never told him that he was the reason I became a drummer. He was older than me, just enough to be that really cool cousin (to my ten-year-old-brain). He had a Gold Sparkle Slingerland set that was just the bomb.
Paul was sickly all his life - although I never knew that. I never heard him complain about not feeling good - don't get me wrong, Paul will go down as one of history's greatest complainers - but he never talked to me about not feeling well. He'd complain about the same stuff I would: "Why isn't Phil Collins more known as a Drummer?"
We all have people in our lives that we owe debts of gratitude to; people with whom we've lost touch; people that changed us, and possibly we them. I want to ask you all to think about those people in your life, and reach out to them, somehow, before it's too late.
Paul died alone. Damnit.
In response to seeing this I have to say to my brother John:
You have always been my hero. I know that sounds SUPER cheesy, but it's true. I have looked up to you my whole life. I tried to be like you, but completely failed at playing any type of musical instrument (not for not trying), and joined choir because you and Chris and all of your friends were in choir. (shout out to Mrs. Keene) If Paul inspired you to be a drummer, you inspired me to be an actor. Actor? Yes. It was after seeing you in Guys & Dolls that I wanted to be up there, on stage, having as much fun. And when I realized music wasn't really my thing, I discovered that acting was. And through that, it led to my newfound love of writing, which I could not be more grateful for.
But other than that, having you as a brother, and observing you and your friends growing up, I was able to understand the male gender as a whole. As little kids, we got dirty, we played Army, or Cowboys & Indians. We shot BB guns and climbed trees. I wore your hand-me-down Toughskins and t-shirts, tried NOT to "throw like a girl," and listened in on your Dungeons & Dragons games with James & Droop. I wanted to be a Boy Scout, not a Girl Scout. We joked about gross disgusting stuff like boogers and farts and poop. I found out what guys liked and didn't like in girls. And that, while some girls are very pretty, and these are the girls that guys like to look at, they're not necessarily the girls that guys want to hang out with. I paid attention.
And now I live with three booger-fart-poop guys, and I dig it. I sometimes wonder what it would have been like to have a sister. Especially seeing Mom and her sisters' relationships, or that of my friends. But I'm so glad I have a brother. As a guy, you taught me what kind of girl to be, and, had it not been for growing up with you, and seeing how things affected you as a kid, I would not have been able to be the parent I am to my boys. I would not have been the same person, wife or mother if not for you.
I'm glad we have this crazy sense of humor and that we can laugh at things like brain tumors, and that our nicknames for each other revolve around some sort of fecal matter. That we can vent to each other about our fucked-up family, and laugh about that, too.
And I'm sure somewhere in your mind you are thinking you don't deserve any of the praise you have been getting, from me or anyone else. And you're thinking about some of the mistakes you've made over the years and wish you could take them back.
But I'm here to tell you that I would have you as my brother, as you are today, and I would not change you one iota, other than to take away your suffering. I wish you no pain, no remorse, no regret, and I wish you lots and lots of laughs. Laugh so hard that stuff comes out your nose.
Namely, that fucking tumor.
Most of all I wish and hope that we have many many more laughs together.
On a beach. Toes in the sand.
I love you.
...by the way, you smell.
Your little sister.