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The Brain Diaries: And How Was Your Day?

It was about three weeks ago on a Tuesday afternoon and I needed to see my gorgeous doctor to make sure my HIV wasn’t catapulting into the stratosphere and turning into a scathing case of polio. With this disease, you never know. So, I like to keep on top of things. Coincidentally, my wife has had this problem with her right ear for a while and had seen Dr. Gorgeous as well, and had a couple of tests done to see if infact, the loss of her hearing was due to something simple, like waxy yellow build up…and not a scathing case of polio.

Meetings with Dr. Gorgeous are always a lengthy visit. He and I spend the first 15 to 20 minutes chatting, giggling and debating the pros and cons of Facebook. Dr. Gorgeous, almost six feet, dirty blonde, lithe, slender, with deep blue eyes and soft and gentle demeanor, hates Facebook.

“I like my privacy, Alex.” He says continually.

“I like your privacy too, but I need you to get on Facebook so I can Like like your privacy.”

He doesn’t get it.

And because Dr. Gorgeous is not only gorgeous on the outside, but gorgeous on the inside, he constantly laughs at my bad jokes, and I constantly appreciate it. There’s a decade of difference in our ages, and so for the last five years since he’s been our family doctor, I’ve been trying to educate him on the likes of Bette Davis, Cary Grant, Susan Hayward, Clark Gable, Roz Russell, Joan Crawford, and of course, La Garland. All of these ladies and gents he’s heard of, but the guy’s lived some kind of strange, sheltered cinematic existence, that not only baffles me, but saddens me as well. I’ve already sent him over a dozen films and made list upon list for his Netflix queue. I like to think that he saves my life, and I enrich his.

We’re a good team.

So I arrived, waited only minutes in his fancy Beverly Hills lobby with the fabulous wide screen TV, and the stacks of shiny gay magazines, walked down the hallway with the swingin’ Nurse Charles (the most glorious male nurse on the floor who does a great Streisand impersonation) and finally ended up waiting in the white, white room playing with the empty stirrups. I try to keep myself entertained as much as possible when waiting for HIV results. Even at this stage, having this disease for over two decades, there’s always a moment of tiny panic as the door creaks open and I see the cuff of a sleeve clutching a stack of yellow papers, all of them filled with my history with this illness in black and white. Like those old films I love, and those old films I’m spoon feeding Dr. Gorgeous, my life tends to play out in scenes with grand Gestures and flickering shadows as I await my future held in the hand of a guy in a white coat and a swinging stethoscope. I live a full life in those few milliseconds. And I’m always well lit.

Dr. Gorgeous entered with his usual smile, and we hugged, just as we always do.

We told a few jokes, he asked about school, I asked about his vacation with his husband, and we both giggled about the Obama/Romney feud.

“I’m going to vote for Hillary” he said taking a seat across from me.

“She’s not running.”

“I’m voting for her anyway.”

He smiled his toothy, flashy smile, and we giggled again.

And then, without warning, something in the room changed. I can’t quite put my finger on it, and I wouldn’t be able to actually describe it without sounding melodramatic, so all I can tell you is that the room sort of…stopped. It wasn’t the same all of a sudden, and nothing huge had really occurred. Nothing tangible. But in my belly, in the pit of me, in the very deepest part of who I am, I felt a switch. As if someone had suddenly turned on a gigantic klieg light in that tiny room, and everything that was white, got suddenly much whiter, and harder to see and more difficult to discern. I was confused and sideswiped by something, and still, I was paralyzed in the preparation of it.

For what…I had no idea.

“I have some news about Chrisanne.” He said no longer smiling. “And I want you to listen to me all the way through. Just listen to me until I’m finished.”

I couldn’t breathe. I was sitting on the paper covering that long table against the wall, and holding on with dear life to the edges, and I was trying with everything I had to take a single breath.

“We took those tests of Chrisanne’s ear, and then after the MRI we’ve discovered a mass on the lower right side of her brain.”

I leaned forward toward him, and asked him to repeat everything he just said.

“We found a mass on the right side of her brain.” He said again. His eyes got a bit darker. He was still smiling, but I could see the lie in the middle of it.

“You’re telling me she has a brain tumor.” I wasn’t asking a question, I was making a statement. I knew what he was telling me, but I needed to hear it plainly, and without any descriptive passages.

“We don’t like to use that word. She has a Mass. Tumor sounds…final.” He said, attempting his smile again.

“But that’s what it is…isn’t it? You’re telling me my wife has a brain tumor.”


And right then, everything washed over me and stung me and slapped me in the face, and I felt kicked in the groin. I remember leaning forward on the table and putting my head down toward the floor. Dr. Gorgeous stood up, and I saw the tops of his shiny black shoes. I felt his hand reach toward mine, and hold it. And as we touched each other, I ran over the last 38 years of our lives: meeting her in 1976 as I sat under a table in drama Club in Schaumburg Illinois and seeing those eyes from across the room, holding hands and singing “Prepare Ye…” from Godspell as we ran up and down the chimp exhibit at the Lincoln Park Zoo, making love for the first time in our first crappy apartment, leaving each other for good because of my transition, making up with each for good because of something else, finding each other, losing each other, throwing pots at the walls in a blind rage, proposing at our favorite restaurant, laughing so hard when we visited Amish Country that we fell off the edges of our King Size bed…holding each other, loving each other, losing friends, family, and ex-lovers, breaking the law by getting married, marrying legally when we finally could, making Art, breathing, inhaling and reveling in a love that’s seemed to last for centuries.

And as I sobbed and the tears fell onto Dr. Gorgeous’ shiny black shoes, I felt myself heave up and down and try to catch my breath.

My wife has a brain tumor.

“Now…I’m almost 100% certain that this is an Acoustic Neuroma, which is completely benign, which means they aren’t cancerous and they don’t metastasize.”


“Alex. Are you listening? She’s not going to die. She’s going to be all right. I need you to tell her this and I need you to hear me.”

Dr. Gorgeous’ voice was different now. His airy, breathiness was taken over by a more precise, stern, steely quality I’d never heard before. He was pointed and serious and he took my chin in his hand and lifted me toward his eyes.

“She’s going to be all right. It’s just a mass on her brain and we’re going to figure out what to do next.”

And the rumble that was in the room, the gigantic noise that filled the Universe and all the memories that were buzzing inside me, and the lights that got turned on too bright and that made too much noise, suddenly, without warning, stopped. As quickly as the room changed, it changed back. I went from one thing to another without anything in between. I was right back where I started. I was the same, only different.

“Okay.” I said.

I wiped the snot from my face and looked at Dr. Gorgeous. He smiled and looked back at me and both of us held the black and white paper of Chrisanne’s head with the golf ball sized mass emblazoned on the lower right side of her brain. As he let go, it sat in my hand staring at me. I stared back at it, and gritted my teeth. My wife was stronger than this. She was bigger than this thing I was holding in my hand and she was far more powerful, and I’ll be damned if we’ve been through all the things we’ve been through to be taken out by a black golf ball. She has more stamina than a golf ball. Screw the golf ball.

“What do I do now?”

“You go home and hand her this and explain to her that she has a benign mass on her brain and that we need to do another MRI to make absolutely sure what I’m absolutely sure of. Can you do that?” he asked directly.


He said some more things to me, but I can’t for the life of me remember what they were. We hugged each other and this time it was a long, tight, solid hug. I grabbed onto him as I slipped off the table, and I said thank you, and I left the office.

As I got to the parking garage, I stood feet away from my car and stared out the exit where there was a stream of midday sun pouring onto the black pavement. I was still clutching onto the black golf ball picture and thinking of what had just happened. And what had just happened to Chrisanne and the fact that as I was standing there, as the sun was pouring in and I was about to drive home, whatever it was she was doing, she had no idea that inside her head was this thing that most likely, we’d have to go to the hospital to have removed. That right then, she was going about her day, working, making phone calls, and drinking her fizzy peach drink, not knowing about the golf ball.

I had a lot to say to her when I got home, and I had absolutely no idea how I was going to say it, or what was going to happen afterward. I needed a plan. I needed to rehearse. I needed an assistant. I wanted an understudy.

It’s not supposed to go like this. This isn’t the way it’s supposed to go. I’m the one that has AIDS. I’m the sick one. I’m the one with the problems and the pills and the schedules and the sickness and the hospital stays and the stories. I’m not the strong one here. She is. She’s the one I go to, she’s the one I lean on, the one I cuddle up to, listen to, ask questions of. If something doesn’t work, I hand it to Chrisanne. If something’s broken, I hand it to Chrisanne. I don’t do stuff like this. I’m not a messenger. I take the messages. But this was a role I was forced into, this wasn’t one I auditioned for. This was it. And no matter what, it had to be done.

After a pack and a half cigarettes, I finally made it home in a haze of smoke, and waited outside our front door for almost 25 minutes. Just standing there. Me and the golf ball. Waiting for someone to say “cut”.
But no one ever did.

I asked Chrisanne to drop whatever it was she doing, and that we had to talk. She could tell by the look on my face that something had happened. I took her hand, and tried desperately to channel my best Bette Davis, and what came out was Lionda Blair:


It was so fast and so psychotic she literally sat on the edge of the bed staring at me with deep concern for my own well-being.

“……what?” she asked calmly.

“Tumor. You have a tumor. You have a tumor on your brain but it’s benign but it’s a tumor and it’s on your brain and it can’t metastasize but it’s a fucking tumor on your fucking brain but it’s not cancer so it’s going to be fine and you’re not going to die and something about an MRI and a golf ball and it's a mass not a tumor because one of them is final, and you have a tumor.”

She sat very quietly.

Her face, usually filled with light and wide with experience and knowledge, fell a bit. She stared at me for a long time and digested. I sat in a pause I’d never sat in before. I sat in wait, and heard the sound of my breath escaping me and as the time went by and we both sat, I felt again as if I was in the middle of two massive things colliding. And she looked up at me, her eyes sparkling and her chin firm and solid, and she said:

“And what did the doctor say about you?”


( 15 comments — Leave a comment )
Jun. 15th, 2012 08:46 am (UTC)
Hugs Oh My! She is incredible. will keep y'all in my thoughts.
Jun. 15th, 2012 11:44 am (UTC)
You and Chrisanne
The major thing I can see in that whole blog is your love for each other. That love will get you through this. Just know that there are people out here who love you and will send their prayers your way. Hugs to both of you.

PS - as I am a golfer, I would be happy to take that golf ball once it's out and smash it all the way to hell.

Jun. 15th, 2012 03:07 pm (UTC)
Oh, so many hugs for you two. This was beautifully written, by the way.
Jun. 15th, 2012 04:29 pm (UTC)
I married my husband in November of 2003 knowing that he had an acoustic neuroma and that he was going to be operated on in mid-December. Neither of us cared at that point; getting married in Canada was the most important thing in the world to us.

Acoustic neuromas, according to Randy's neurological surgeon, have a very high rate of successful surgical cure.

Randy went into Kaiser Hospital in Redwood City, they took out the acoustic neuroma, and after a week or so of recuperation, I brought him home. And he's remained tumor-free ever since.

Because the tumor was sitting on the canal, along the auditory nerve, they could go in a couple of different ways. Either way, they would get the tumor. One way held a risk of some facial paralysis, the other had a slight risk of a degree of permanent hearing loss.

Randy's a rabid classical music fan. He chose the risk of facial paralysis. It took him about six months to get most of his facial nerves working again. There's a very, very slight cast to his features, but none of that matters when I see a beatific smile burst out across his face as he listens to Bartok. Or Brahams. Or Adams. Or...anything.

An acoustic neuroma is not a death sentence. You will both get through this, and you will both be stronger for the experience.

I hope this helps, at least a little.
Jun. 17th, 2012 12:50 am (UTC)
Thank you, thank you, thank you so VERY much!! I read this to Chrisanne, and yes...it helps. Tremendously.

Please. If you can, and if you think of it, please keep writing me. It means so much to hear from everyone on the blog, and so much when we hear from people who've been through this. It's so brand new and so frightening. There've been a couple of curve balls thrown at us in the last week (which I'll write about soon) so it trends to bend us. Neither of us break easily, it takes a lot to do that, but we are human and we do shatter.

But thank you, Allan. From the bottom of my heart.

Jun. 17th, 2012 01:57 am (UTC)
Re: Allan
Younare most welcome. :). I will absolutely continue to read every one of your posts, and will continue to write.

Edited at 2012-06-17 01:57 am (UTC)
Jun. 16th, 2012 01:03 am (UTC)
I hope things are OK for your beloved. This was a beautiful post.

Good thoughts your way.
Jun. 16th, 2012 08:11 pm (UTC)
My Beautiful Angel
I am holding you both in prayer, breathing with you both, and keeping you both in sacred thought. The love that the two of you share is like a boat ... a very well made and amazing boat. You have ridden out the waters of life no matter the weather, climate, or tide. I believe in you both as surely as I believe in God herself.
Jun. 16th, 2012 10:35 pm (UTC)
I'm so sorry. You two have been through so much. I'm sure you will get though this too.
Jun. 17th, 2012 12:52 am (UTC)
Thank you so much. It's a very scary time right now, and hearing from you guys helps. You'll never know how much.

Thank you everyone.
Jun. 18th, 2012 01:50 am (UTC)
sending love
Alex & Chrisanne,

Sending you both much love and healing thoughts. xoxoxo

Jun. 19th, 2012 01:43 am (UTC)
It's been awhile...
But, it's good to know that you are both as strong and happy as ever. I wish you the best. - Picchi
Jun. 19th, 2012 01:55 am (UTC)
And so it goes....
Alex, this is a beautiful tribute to the love you and Chrisanne have for one another. In sickness and in health. You were meant for each other and always will be. I wish you both nothing but love, strength and good health. It has been years since I have seen you both (back int he days when Chrisanne and I worked together at Aon Consulting), but I do think of the two of you often. Please give my love to Chrisanne.
-Lily Aguilar
Jun. 19th, 2012 06:58 pm (UTC)
Guys - I am with you in this time:) I've known Chrisanne for few years while working together at BE. Now I am in Poland, so far away from you guys, but I still think of her as of a fabolous person, full of joy and laughter. She is amazing and that is how her life is and is going to be. She will not die, she will be just fine! I am sure of that because that is how she is, she loves her life and her wife. This cannot stop... not yet.
With love,
Jun. 21st, 2012 09:45 am (UTC)
So good to hear from you! You know...Chrisanne always spoke of you with great affection. I always felt we had a friendship only because of how Chrisanne described you and how she spoke of you.

Thank you JJ for writing. Please keep in touch. I hope Poland is fantastic. I don't know much about it, but if you're there, I'm sure you're making it a bright and beautiful place.
( 15 comments — Leave a comment )