Reflections on Two Years Ago...

I couldn't believe when I looked at the calendar this week and realized I'd completely missed the anniversary of Ken's hemipelvectomy surgery. And more than that, I can't believe it was two years ago--and somehow--and not just last year. It seems I've lost a year somewhere along the way. I remember we didn't commemorate it last year either. It slipped past us silently--like a ninja.

That surgery was our greatest hope--to rid him of the cancer that had returned--and our greatest fear--what would life look like for him--and for me--without a pelvis and one complete leg. But either way, it was full steam ahead. Ultimately, it was his decision and I knew he would decide to proceed with surgery after we heard the limited array of options. And he had my complete support--always.

The events of that day--surgery day--are as clear me to me now as they were that day--maybe clearer, I wasn't getting much sleep then. "Daunting" doesn't begin to describe it. But in 2010 we were all so optimistic, and had every right to be. But more importantly, there was no room for pessimism for such a complex, invasive and life-altering procedure. (There was never room for pessimism in Ken's life…period.) I was surrounded by family and friends in the waiting room that morning, but in truth I'd never felt so alone. Ken was my main support pylon in every respect and despite their best efforts no one could come close to making me feel as reassured as he did.

We didn't realize the surgery hadn't started on time. In fact, it started several hours later than planned. So as the clock in the waiting room spun at a snail's pace, mocking me, I wanted to crawl out of my own skin--and into someone else's life. As the morning passed, members of surgical teams who had been so appointed came to collect the family of a patient, or at least to give the latest information. Each time someone in scrubs approached the waiting area, I clinched my jaw, hoping it would be about Ken. Each time, it wasn't.

When the waiting area attendant told me there was a phone call for me, I got nervous. No one else had received a phone call in all the hours I'd been sitting there. When she pointed to the phone on the wall on the far side of the room, it was like in the movies when they do the trick with the lens that makes an object move further away. I felt like it took forever to get to that phone. I could hear the sound of my blood pumping--and pretty much nothing else. The surgery was over, and Ken had come through it expertly. I could start breathing again. As much as I appreciated that phone call, I really wished someone would have come in person like they had for everyone else. Never underestimate my ability to question why something is done differently than the norm, and interpret only the worst possible meanings.

Ken recovered so quickly that week in the hospital. Too quickly, I think, for his own good. He was freaked out when he found out early Friday morning he'd be released later that day--after undergoing the surgery on Monday. I was surprised, but not as freaked out. (Only one of us could be freaked out at a time and he had "dibs".) He was terrified, actually, about coming home. Who could blame him? No 24/7 professional medical care. So many unknowns. It was a watershed time for me because this wasn't something we could sit down and discuss together. Decisions couldn't be made by committee during that time. It was up to me. He needed to be taken care of--physically, but more importantly, I think--emotionally. I learned in some small measure to handle things as he would have before the surgery--and ultimately after it as well. Things would be fine. Bumpy at times, yes. But we'd figure it out. And we did. We weren't as prepared at home as we thought we were, but it didn't take long for a visiting nurse to get us set up properly. Add one pushy Russian physical therapist to an already determined spirit, and what you get is hope, and a recovery for the record books.

By early spring Ken was moving freely around the apartment with a walker, pushing himself to blissful exhaustion--"sneaking" up behind me as did dishes or made dinner, and enjoying scaring the bejeezus out of me. I wasn't used to him being up and around. It was the best kind of scared I've ever been.

I don't have much of a written record in my journal of the events of that day or what followed that week because I was too…busy, distracted, scared. But I went back through my emails from that week and read them. I was sending updates to a vast distribution list of Ken-lovers with any significant developments. And they responded with the most beautiful messages of love.

Though brief, this post will be my way of celebrating such a momentous anniversary in my life. When I look back on this very solemn day I feel many things: frazzled, worried, exhausted, but mostly relieved and grateful; that Ken handled it so well and that we were both surrounded by such an amazing and loving group of people--who continue to support and love me.

For better or for worse on that day life truly became all about the journey.

A couple of days after surgery, I noticed this valentine down the street from the hospital. It was made from snow and died pink. It was like a piece of love art. It always makes me happy to think about it. It's an artistic, grand gesture worthy of Ken.

Keeping My Head Low @ CVS (and Other Lessons Learned)

I have the good fortune and good genes to not be sick very often. This week I got sick. Just a cold. But a bad one for a big baby who who hasn't been sick since before Ken was rediagnosed with cancer in 2009. I wonder if maybe I have been this sick, but it was all relative and because I had so many responsibilities, it didn't matter. I had a purpose bigger than myself. I was a part of something bigger and more important.

But this week I was just sick. No bigger purpose. No one else to distract me or to take care of. And, for the first time in ten years, no one to take care of me. I don't know how it works for most people, but when I get sick I get horribly depressed and my world view becomes very grim. Aside from hacking up phlegm globbers (GROSS! I know, I say it every time), I am compelled to ponder the grandest of questions until I shut down and have no choice but to lose myself in reality TV--well, that was before I reduced my cable package--now it's losing myself in "The Increasingly Poor Decisions of Todd Margaret." Thank you, IFC and iTunes!

I couldn't help but think the last time I was this sick was a time when I had a fluffy Quantum to snuggle with and a very awesome and loving Ken who would arrive at home around 5:30, soothing me with his velvety voice, a quirky song and a gentle touch. He was the only person I have ever trusted to take care of me. And experiencing this "first" in a normal frame of mind would have been difficult enough, let alone in an altered- world-view-frame-of-mind was at times almost unbearable. I spent a lot of time this week in my bed--our bed--wishing beyond reality that he'd be arriving home that evening and that I could melt into his embrace. In so many ways I felt like I was starting from scratch in the mourning process.

Dragging my hacking ass to Jewel on a 50-degree Thursday to get supplies and meds for Friday's ensuing snow storm, some of my sickness was hurled at a moronic CVS worker who kept scanning a key card for my over-the-counter cold meds that repeatedly didn't work. Over and over and over. Not even looking at me and talking with a coworker about how her key card didn't work. Choking on mucus and bitterness I verbally crucified for "subpar" customer service and enlightening her on the clinical definition of insanity (repeating the same behavior and expecting a different result each time). Yeah, not my best work, but I still don't feel guilty about it. I'm sure she'll get me back on my next visit. "Price check on the hemorrhoid cream for the smart-mouthed, phlegmy older gentleman."

On Friday morning I could actually feel the optimism returning to my soul, replacing the gallons of sputum I'd chased away with Dayquil, Zicam, vitamins, and water. The harsh HD magnifying glass of my cold was shattering and giving way to a less grim world view. In many ways, it was another good bye; to physical--never emotional--aspects of my old life. Old life. It hardly seems right to say it like that. But in all the journaling I've done this week, I think the key in living my "now" life involves putting my "then" life (yeah, that feels better) into perspective and figuring out how to let it go--not forget it. Never forget it. I wouldn't--couldn't--do that. But I guess being focused on the "now" is what's important.

There is a place for my "then" life in my "now" life. Figuring it out isn't a destination, it's…(shocker)…part of my journey. I'm not 100% over my cold yet, but I'm getting there. This sucky experience of being sick was a "first" I could never have anticipated being so layered with challenges and feelings and angst. But, such is life. Now that I'm on the mend and getting back on track, I'm still planning to spank 2012 like a foul-mouthed brat.

The daunting question at hand: when is it safe to return to CVS?

The Writing is on the Wall

I really enjoyed writing last week's blog. And it came at just the right time. I began the new year with a grand cleaning and organizing project around the apartment. I'd gone through every room, touched practically everything and pulled out and donated miscellaneous and sundry things. After I'd finished up I sat down in my organized office to work on the book I've started about Ken, sharing stories from our life together and the lessons he taught and the joys he brought. Turns out, I was being too ambitious. I fell into a funk for the first few days of 2012 and it took me a while to figure out I'd done it to myself. It had been too much and I paid a very sad price for it--but have learned from it.

I stumbled around for a day or two until I was sitting in front of my computer and looking at ideas I had for the blog. I'd started writing the piece from last week in October, but I'd put it away and forgot about it. Just reading through it made me giggle--not from my writing, but from reliving the experiences in my head. I was drawn to work on it and after being so glum for the past few days, I took pauses during my work session to notice how happy I felt--even smiling. I felt it as I was writing. I was doing something that was moving me in the right direction. And it felt so good…and productive in a very important way.

Friday night I came across a DVD of some shows I was in while training at Second City back in the late 90s. That was another time in my life where I can definitely say I was doing the exact right thing in the right place at the right time. I met lifelong friends there and the shared experience of attending classes at the venerable Second City Conservatory was a mind blowing and unforgettable one. Watching the performances and recalling the fearlessness of the era filled me with improvisor's euphoria. I was IM'ing with another alum Tina about how hard we rocked it (wether we did or not). Still relishing the euphoria, I asked if she wanted to go to our favorite Boystown bar and throw back a few before finding someplace to dance. And indeed we did. We partied like it was 1998 and it was very fitting. I haven't been out on the town until 2 am for a very long time. It was a great battery recharge and reminder that--again--I was in the right place doing the right thing.

As the days pass I feel writing's importance in my life growing even greater than it has been since I was 13 and started writing my first stories. I got out of the house for a bit yesterday and walked to a coffee shop nearby in Lincoln Square to work on my essay class assignment and to fulfill my non-work socialization for the week. It was so lovely. I can usually talk myself out of leaving the house to write when I can do it at home, but I knew it would be good time and didn't stop to talk myself out of it. While sitting in the front window, my friend Beth and her little boy Ian passed by and we talked for a moment or two on either side of the window. That never happens to me, and was an awesome surprise. I love the "neighborhoodiness" of Chicago.

And I like feeling that I'm in the right place and moving in the right direction.

If You Build It, They Will Come (like it or not)

I grew up in the church--or rather I grew up in a church. No, my parents weren't a pair evangelical ministers--they were a pair of…other "colorful" nicknames throughout the years. I grew up in a church because my dad stumbled upon one for sale in rural town he'd driven through on his travels working for the state of Indiana. Unlike a normal person who would have just started a secret second family in this ideal isolated hamlet, he actually relocated my mom, two sisters and me to live there--after a bit of weekend remodeling.

I barely remember our previous house as little more than blurry snapshots in my head, taken by a one-year-old with a penchant for sneaking sips of grandma's beer. But I do remember going to the new house on weekends to "assist" my dad and grandfather, and to marvel at the open space of the house and yard. Having been a church, the house was wide open with few internal walls. My folks worked with my grandfather, a carpenter (like Jesus Christ - coincidence?) on creating a blueprint for the new house which cut the house up into the usual rooms you'd expect.

My parents didn't love my two older sisters enough to build them separate bedrooms. But they loved me enough to give me not only my own room, but a sort of custom upper bunk bed situation where my bed was attached to the wall and rested on my dresser, leaving a secret passage way behind it. A wide ladder was the way up to my loft bed, and thick rope with huge knot hung just at the end near the ladder. It was fun to swing on until pendulous gravity began helping it burrow up my bum. But it looked cool as hell and was the envy of any friend I had who ever saw it--all two of them (one was imaginary, but that still counts.)

Some weekends the renovation was a true family affair. In addition to my dad and Grandpa (his dad), my Pap (mom's dad) would come down to help. I remember him digging a huge hole on the side of the house--for plumbing or something. When it was done he asked me if I wanted to get into the freshly dug hole and play. As soon as I was deep into the wet earth he told me he was doing to fill the hole back in. I couldn't prove it in court, but the bury-me-alive part was heavily implied. When some adult finally came to the aid of my cries for help I was retrieved from the cavern and placed safely above ground. I'll never forget how hard he laughed while I was terrorized, thinking he was going to let me die in that hole. (I'm sure the hole wasn't as big as I remember; hopefully neither was my Pap's bloodlust!)

Once we were settled into our new abode my sisters would seek constant revenge against me out of their jealousy. One of the rooms carefully designed was a huge walk-in closet in our entry way. It housed my dad's suits and served as general storage for miscellaneous junk--and me. When my existence was deemed "a problem"--as it was from time to time by my sisters (one in particular, but there's no need to name names), I was tied to a chair with fashionable belts from my mom's terry cloth closet and force-fed ketchup sandwiches. But the joke was on them: a) I had learned to crave adventure--and kidnapping--from a couple of bionic friends and three little girls who went to the police academy, b) I looked amazing in terry cloth, and c) I LOVED ketchup sandwiches!

Other times when they'd set up their shared bedroom as a general store and play "town", I was only invited at the very end--though I'd been begging to be included since set-up. "Ronnie, do you want to play?" they'd finally ask me enthusiastically. "Yes!" I'd eagerly reply, jumping to me feet ready to dig in knee deep into "town". "Ok. We're cleaning up the town." The joke was back on me. My role in "town" was never more than "streets and sanitation," and it only worked on me every single time.

Any city family who relocates to the country gets a puppy (who may or may not turn out to be a furry despot.) When it came to household status I wasn't even a close third compared to our family's beloved "wonder dog" Buster--who was without dispute lord and master when Dad was traveling as he did back then. In my father's absence, Buster ran our household with an anything-you-treasure-should-have-my-teeth-marks-in-it attitude. Not unlike like my sisters, Buster liked--needed--to be center of attention. If someone brought a baby into the house, he'd take something from the diaper bag out of jealousy and chew it to a nub in his dark lair under my parents bed.

Sometimes, he'd somehow take something off the counter--mostly Tupperware--and retreat to his bed-framed cavern to decimate it. A simple command from my father would have gotten him to relinquish whatever he'd taken, but in his absence if there was any chance of getting it back with minimal damage, speed and Kraft singles were the answer. A slice of American cheese could sometimes be used in a primitive bartering system the rest of us were reduced to practicing. There were times during the complicated negotiation between my sister and I and Buster when his monotonous and unending growl would increase in volume and ferocity, depending on how close our hands were to whatever treasure he held in his death grip. To add insult to injury (which was inevitable if Dad was out of town) Buster would sometimes throw his paw into the object just to hold it steadier, his brown eyes never leaving us. He had swagger, no doubt about it.

Sometimes after particularly long negotiations we'd get sloppy, and Buster might release the Tupperware only to replace it with my index finger--which would have been too close during the cheese-offering/goods exchange. Gulping the cheese wasn't enough for him. He liked bargaining chips. And my index finger played tightly gripped hostage more times than Flo told Mel to "kiss her grits." It was in situations like this when I'd yell "GO GET MORE CHEESE" that more times than not my sister slump back empty-handed. "We're out of cheese," she'd shrug. I logged almost more hours on my parents' cold tile floor than I ever did swaddled in terry cloth in the walk in closet. And it was a far second choice.

(Buster romping in the foreground completely ignoring my sisters and me. Oh, wait, I'm ignoring them too, so it's okay. I think I was about to throw gravel in the faces for pay back for my bit part in "town".)

And what the hell is going on with my wagon? Why aren't I in it and being pulled around like a little prince by his two older huskier sisters?

Turning the Shiny Page

Like any story worth investing in--the kind that can sweep you up into its enthralling grip--turning the page is the only way to find out where the story leads, taking with you the sum of the story thus far. My life is that story. Ken isn't a footnote in my story, he's the theme. That won't change. And as difficult and heartbreaking it is to face a new year without him, part of me--maybe a selfish part--can say with relief "this isn't a year where Ken is sick" and at the very least "this isn't the year Ken died."

I spent New Year's Eve alone intentionally--physically, not emotionally. I declined New Year's Eve gatherings given out of the truest and loveliest intentions. (I spoke to some folks and received texts from others.) But NYE this year held a lot of weigh for me. I've spent all of the previous ten NYE with Ken. Some of them were with friends, some with family, some with both, but all of them were with Ken and many were just he and I (and Quantum) at home--whether in LA or Chicago. And unlike so many other holidays, NYE doesn't have any implied obligations. So we were free to make our own plans--or make none. It seemed incumbent on me to reflect on the events in 2011. Yes, the sad ones, but more importantly the happy ones. The times--even brief moments or seconds--when Ken and I shared a laugh or smile or held hands. Connecting with him was certainly the brightest memories I have of the year, but many others spent with loved ones--laughing, crying, and all in between--were among some of the most important ones as well.

It hardly seems possible to me that it's been a year since last NYE. It's somehow so easy to blink past all the events that occurred in the interim--including his death. I can remember last NYE so vividly, with his parents staying with us for the Christmas holiday. We didn't officially know what we were facing then, and though he was getting radiation therapy to treat the tumors we knew about, he was uncomfortable and in pain--though you would never guess the magnitude because of his "ken do" disposition. I long for him and our times together, but never would I want him to be in the kind of pain he endured daily. My intellectualizing self can wish for it with impunity, because I know it can never be. Yet even when I've wished for it, I never fail to qualify it "without cancer or pain."

I feel very optimistic about 2012 and all the promise it holds. Moving forward is never about forgetting--though at times it can feel that way. It may be an arbitrary date based on an ancient calendar, but the newness and the "do-over" aspect of the first of the year is undeniable in me--particularly this year.

It's time to turn the page and find out what's next for me and my story, understanding Ken and memories of life together will always be tucked safely in my heart--treasured and visited open. It's not a dramatic proclamation. It's really nothing more than I've already been doing for the past seven months. But something about the New Year makes it feel…shinier.

(For New Year's Eve 2004, we decided to get fancied up and head out to dinner at The Eclectic Cafe, a nearby restaurant we always enjoyed. Of course, we were the only ones with 6 pm dinner reservations, but we did have a Quantum to get home to. Ken (right) so clearly eclipsed me with sheer dapperness and ridiculous handsomeness. It doesn't take Vidal Sassoon to see I was clearly dealing with a "hair situation.")