The V Day Gauntlet

Ken always scoffed at the idea of Valentine's Day. A Hallmark Holiday, he'd call it. But the truth is, he just didn't believe it should be relegated to one day a year. He was always presenting me or surprising me with beautiful cards he designed and filled with sweet nothings. I have collected some of them, but haven't had the wherewithal to centralize all of them. A task for 'someday'.

I have to say my subconscious did a superb job and constantly making me forget it was the Day of Lovers. When I got to work this morning, I held the elevator for a stranger I saw rounding the corner. When I exited the elevator on my floor she said, "Happy Valentine's Day." It was sort of puzzling to me (maybe it was a better hair day than I thought?), but as the day wore on and I received Valentine's greetings from people I actually knew I realized today was a recognized day of love--ideally and selfishly not from the one person I'd love it be from--and there was no denying it.

It seems when you love or have loved as much as I have, there is a wake of sorts that washes up on you--sometimes when you're not expecting it or even wanting it. Of course, not wanting love is ludicrous. We all want it. We're not always ready for it. I'm becoming an expert at not being ready for feelings I'm not ready for. As I left the office this afternoon, it was like a replay of leaving work the first day I returned to work after Ken died. The elevator ride and walk to the car was a shocking realization that my emotions were about to explode. After they did the ride home was quiet. I realized it on Lake Shore Drive. No music. No talking (I talk to myself a lot--or, really, I do "scenes"). Nothing. Quiet. Solemn.

When I got home I went to my computer and pulled last year's blog from Valentine's Day. It was dedicated to him, and it's the only comment he ever made on my blog, though he was a reader of it as long as he was able. It's as special as it is difficult to have words he wrote frozen in time and accessible whenever I feel the urge to connect with him or punish myself. His words are so present and sweet. So very him.

Love comes at you. You can't always predict from where or when it will happen. And it won't always be from a desired source. But if you're as lucky as I am, it comes from all around. Friends and loved ones reaching out and loving me. And that reminder was confirmed when I opened my front door and found a box of chocolate covered strawberries, courtesy of my LA family, with a sweet note.

The box of goodies came with explicit instructions--which I followed to the letter:

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 Christmas Entry

(My parents living room looks like a Christmas card, right?)

I woke up early this morning--and breathed a sigh of relief. The emotional gauntlet of my first Christmas without Ken was over! I never imagined having to experience one without him after we met in 2001, and after he died in June I dreaded December and all the holidays that surrounded it. An internal clock counted down the days with deafening silence as the year drew to a close.

But it was okay. Christmas wasn't just bearable, but it had many moments of happiness, laughter and joy. For me it was both surprising and expected. I don't think I could have fallen in love with Ken without possessing (or learning to posses) the much mentioned "journey" mentality. And likewise, I have found the "fake it 'til you make it" mentality to be just as important. Learning what to focus on and what not to focus on have been my stock and trade since Ken's re-diagnosis in 2009.

Spending Christmas with my family was truly wonderful. Though there was no snow to be seen, the Christmas spirit was present and accounted for in my childhood home. My parents possess an equal measure of realism, optimism and hard-boiled family loyalty that was served up on a platter of love for me to dine on. It wasn't just my determination to endure the holiday and somehow enjoy it alone--it was the determination of those in my family--the "birth" family who I spent the holiday with as well as my "marital" family who I spent the day with emotionally, as well as my "chosen" family of friends who thought of me, emailed or called me or Facebooked me encouraging words of love and support.

A true "win" for me this Christmas was after returning home to Chicago on Christmas Day (my family's annual celebration is on Christmas Eve), I uncharacteristically accepted an invitation from my friend Beth to drop by in the afternoon for a Christmas cocktail and spend time with her, her son and family. Usually preferring to keep my own company--particularly during times of emotional tumult and the innate difficulty of being without Ken--after considering the kind invitation, Ken's unmistakable voice said "why not?" And had he been here and we were spending the day together, he would most certainly would have wanted to go and spend time with her and her posse. Doing something new and social was right up his alley.

She lives nearby so I opted to walk--all the while stupefied that I was actually doing it. I knew Ken would be proud of me, which made the decision more steadfast in my own mind. Watching her 3-year-old son's excitement about Christmas and Santa reminded me so much of Ken's my nephews Jack and Nathan and Ken's own childlike enthusiasm. I held her 10-month old nephew as he played with some of his cousin's building blocks. While conversations went on around me, it felt like I was the only in the room, holding Isiah and watching Ian play. It was an ethereal moment I'll never forget. Moments like that haven't been uncommon, and feel like I'm suspended mid-air between my past and my present.

My walk home was slow and full of memories--not just of the Christmas I'd just left, but of ALL of them. From childhood to the nine Christmases I spent with Ken, in particular. Decorating our tree. Our annual holiday party. Christmas Eve breakfasts on the beach in Malibu with his family when lived in or visited Los Angeles. It seemed like a LOOOONG walk, and at times I wanted it to be over with--just like part of me wanted Christmas to be over with. What was so striking was walking home through the neighborhood without seeing another single person--except Santa, of course.

But Christmas is over. And I got through it--enjoyed it, even--with a little help from my friends, and Ken's ever-present voice in my heart and in my head.

Merry belated-Christmas.

Searching for Christmas

As much as my brain is so wanting to get into the Christmas spirit and feel all the wonder the season implies, my heart…just isn't. I have been working my ass off to continue with traditions that Ken and I shared. Every day together was special, but the holidays were even more so. Sharing them with him, and relying on his inexhaustible optimism leaves me feeling a bit…lost…again. I knew Christmas would present its challenges, but though I thought the "what if" in me had calculated all the permutations of potential sadness and had designed "work arounds" I knew I was fooling myself to some extent, but was prepared to be surprised.

Last weekend after I returned from California, I pulled out the three components of the pink, shimmery Christmas tree I bought for Ken in 2009 and assembled it, placing it in the spot it stood in last year. The Christmas spirit has been elusive this year--as anticipated. But I've kept trying to kick start it with favorite holiday movies and plans to do some baking other holiday-inspired activities. Also, in considering Ken's personality and spirit, I know he'd want me to do what I could to "feel" Christmas. I've kept telling myself, "I've lost Ken. I can't lose Christmas too." And I think that's what fuels my rampant need to get into the spirit--this year more than any other.

I yanked out all the boxes of Christmas decorations--boxes I'm certain Ken packed away as the more patient and far more effective packer. If they were sitting in the middle of the living room, I'd have no choice but to pull out the decorations. Not so much. They sat in the middle of the living room for a week. Apparently, my "work around" was to just not go into the living room.

But this weekend was "it." Like it or not, I was going to decorate that tree!!! I had a plan. And a new tradition to start: ordering a ton of Chinese food, watching a few of my favorite Christmas movies and decorating the tree on Saturday night. To help along my Christmas spirit I got a surprise text from my sister and brother-in-law who were not only visiting Chicago for the weekend, but were seeing a play just four block from my place. I was delighted to hear they were so close and met them for drinks after the show ended. We had a great time, and laughed a lot--as usual--and anticipated the hijinx of our family's Christmas together.

Later that night, food ordered, my decorating plans were put on hold due to a defective string of lights. A fruitless trip to CVS, put my plans on hold until today when I was able to go out--first thing--and pick up some strands of blue lights. After heating up a plateful of Chinese deliciousness, I set out to accomplish my tree decorating task. Bittersweet and even a little haunting, I went through the boxes and pulled out the decorations for the tree. Time stopped as I held the very first ornament in my hand. It was a difficult moment. Memories of decorating with Ken flooded back--particularly last year. It's like when people say their life flashes in front of them. My life of Christmas memories with Ken deluged my brain. Knowing I didn't have a choice--and as experience has taught me--I surrendered to the feelings and sat down by the tree head-in-hands and sobbed until my skull ached. Acknowledging my grief and expressing it are important--as is decorating my tree.

Once my "grief burst" passed, I set to the task of placing the ornaments. And has been the case for the past two Christmases, I can't look at that pink, shimmery tree without smiling. It's whimsical, bright and unconventional--like Ken. As "Love, Actually" played in the background I lost myself in the art and mathematics of placing ornaments (which include the special one pictured below). It wasn't as joyful as it was comforting and somehow satisfying. Honoring tradition.

Once I was done, I ventured up to Lincoln Square to the Christkidl Market. How's that for some holiday cheer? My determination to force Christmas down my own throat has pushed me beyond my own comfort zone limits. Well, almost. When I got there and realized--unlike the Christkindl Market downtown--this one was one was under a giant, hot, sweaty, tent stuffed with people (and strollers). I made my donation and one round then immediately exited. But I managed to do a little shopping at the quaint shops in the Square, listening to my Christmas playlist on my iPhone. Like my quick trip to Ribfest this summer--and, really, like venturing out and doing anything I wouldn't normally do, I gave myself an "A" for effort then headed home.

Besides, it's about the journey, not the destination.

My tree…

Things I Know After the First Big Holiday

I spent thanksgiving in Southern California with my in-law family. As much as I was looking forward to the trip, part of me was dreading it--the "unknown" part of it. I didn't ever want to have to celebrate a holiday without Ken. I wasn't sure how it would go. And that was scary.

As much as I would have liked to avoid it, the holiday--as did my trip to Cali--loomed closer every day. But the closer it came the more excited I got. Not necessarily about the holiday, but to see family and friends. It was an important trip. Weighty. And in my eyes would set the tone of future trips--of which I would expect there to be many. But denying my underlying "what if" methodology I took the trip day-by-day, and sometimes moment-by-moment.

The last time I'd been to Los Angeles was with Ken for Xmas of 2009--just after we learned his cancer had returned and a hemipelvectomy was our greatest, best hope. We knew we wouldn't be traveling for quite some time. (Though Ken shattered expectations--and probably records--in his recovery and flew out six months later to surprise his dad for his 70th birthday.) It was a weighty trip as well. Punctuated by an early flight home to tend to our ailing 16-year-old Chow Chow who died shortly after our return. Hurried and scarring in ways we didn't have time to address at the time.

But on this trip spending time with my friends and the family--particularly my nephews--was a powerful and positive reminder that life continues, and joys and laughter abound in some of the most unremarkable moments. I learned perspective is a powerful thing. To lose it, devastating. To have it, extraordinary. And we must experience both at times in our lives. I learned still can party until 2 AM (though the price paid the next day is greater than I recall it being.)

I was reminded that family bonds don't change and, in fact, strengthen in the wake of loss, and that I will always have a home in LA. I learned that we are all resilient because it's who we are and as much as who we have to be. I was reminded that in spite of what I may have lost this year, I'm the luckiest man in the world and have more to be thankful for than I could ever express in words.

This trip also reminded me of some things that used to be so normal--visiting family--but haven't been normal in the past year or so. I'm grateful for every moment spent with Ken and that so many friends and family made it a priority to do so as well. But it feels good to spend time with the family...just because. Without the vice grip of some impending darkness. A return to a normality that isn't really normal at all…yet.

On the flight home, looking at photos I'd taken on the trip, something occurred to me: PadLo was a unique creation on his own, but became something special and worthy once Ken loved him. The same can be said for how Ken's love changed my life incalculably. And seeing PadLo hanging out with other unique creations made sense to me. Ken will forever be the reason I came into his family--now, my family. And the members of that family all experienced loving and being loved by him. They are all special and worthy, too.

Taking Down Summer

Today was another gift from Mother Nature. It was clear, sunny and warm--particularly for late October. I made a list of the tasks I wanted to complete today during the course of the week on the dry erase board hanging in the kitchen. Ken and I used it as a "vision board" of sorts to keep track of current creative projects and write down ideas for new ones. I still use it for that: blog ideas, reminders and to track the last book I read to encourage myself to read more. A small square I drew in the middle lists things I would like or think need to be accomplished.

One of the items on the board had been daunting me since I wrote it. And I suppose that's why I put it there. To keep it on my mind and to passively bully me into doing it. "Take down canopy frame." Since moving back to Chicago five years ago, it signified the end of summer and served as the harbinger of winter's approach. Unfailingly, Ken was the one who took the initiative in the spring and in autumn to set up or take down the canopy. Though the sun has been too low to hit the backyard for weeks now, I ignored the black aluminum frame as I walked through the backyard to and from the car.

But today was the day. I didn't know when it might rain again, so like pulling a bandaid off, I set out to do it quickly. But it just never works like that for me. Plus, the accordion action of bringing it down took longer than I would have hoped. As I moved from pylon to pylon in turn, pressing the release buttons, my nostalgic mind unavoidably drifted to the breezy day in May when I set up the canopy with the help of my sister-in-law Katie--and under Ken's supervision. She had come for a few days to visit--one of many she and my brother-in-law and nephews were able to make, knowing our time with Ken was going to be limited.

That day in May, I braved hamburgers on the grill (comfort in the kitchen doesn't translate to comfort with the grill for me) and the three of us sat around the table under the shade of the canopy, talking, laughing, and enjoying each other's company. It's a memory that is emblazoned in my memory in stingingly vibrant colors. It was such a lovely day. It was as special a day in May when I erected it, as it was a reverent one when I took it down today.

(Ken was so impressed with the burgers and so expert at being in the moment, he snapped a picture of his.)

Our backyard has been a place of so many happy times--far more in quantity than the sadness that eclipsed everything this summer--and almost every single one of them included Ken. I haven't spent much time back there in the past few months. It's just not the same. Nothing is the same--including me. Time and healing on the journey are showing me that change is just that: change; and it sometimes defies being measured as "good" or "bad". In spite of what I may want, change is inevitable, and something I'm working to embrace--or at least despise less.

There are other kinds of change in the air, as well. I attended a writers' meet up last week at a coffee shop a couple neighborhoods away. It was really very exciting to me--just going and doing something new on my own--a feat that usually causes a great amount of anxiety. It involved mostly just heads-down writing on your own project, but ends with a really informal social component where all of us attendees just sit around and talk. In spite of my initial fears, it was the part I enjoyed the most. It felt like a pay-off for my bravery. I gladly accepted it, and am looking forward to the next one.

As for the back yard, next on the dry erase board list: "clean up garden", another dreaded nail in summer's coffin. More change. More time. More healing.

Dinner with a Friend

I received an email last week from Kathy Buckley. She is a stand-up comedienne and motivational speaker, and she was someone Ken loved very much. They met in 2004 when we lived in Los Angeles at a Disability Showcase for CBS, and in my recollection it was love at first sight. I remember him telling me about their first meeting and her brazenly honest approach to life. She was somewhat of a mirror to Ken--neither of them looking at their disabilities as inabilities. Anyway, her email indicated she'd be in town and wanted to know if we could get together for dinner. It was really excited to hear from her, and even more so to be able to visit with her.

I remember all through Ken's illness I received a phone call every so often from Kathy--calling not to check on Ken (because they communicated regularly)--she was calling to check on me. I had never actually connected with her, but would try to send her an email to thank her for the call and update her on how I was doing. In March when Ken was in the hospital before being released to come home for hospice, she had called me. I was stressed and emotionally stretched to my limits. I had left Ken at the hospital with visiting friends to come home to coordinate the removal of a really unsatisfying massage chair I'd bought for him and the delivery of his hospital bed, oxygen concentrator, and all the accoutrements of hospice. Kathy's call came while they were putting together the hospital bed. I felt so bad that I'd never been able to talk with her live, so I answered, thinking it would do me good to talk with her. I think I got out, "Hi, Kathy" before I completely broke down--unable to utter another single word. After a few moments of my complete inability to get out one single discernible word, she told me she very sweetly told me she loved me and that maybe it would be better we spoke another time. I did my best to reply in agreement before hanging up and stumbling to our bedroom where I curled up on the bed and let myself completely unravel for a few brief minutes, but picking myself up, washing my face and heading back to the hospital.

Ah, memories!

I'd had a couple of "dark" days before I met Kathy for dinner. I'm certain part of it was anxiety about seeing her and just not knowing what to expect. Could I comfort her if she needed to express her feelings about Ken's death? Would be both be messes? Or would I just not know what to say to her? In trying to figure out why I was feeling so uncertain, I thought a lot about Ken's journey-oriented attitude--one I'm trying to adopt when possible--and considered that sometimes my feelings can be too complex to be "figured out". In those cases, it's been more "fake it 'til you make it."

When I arrived at the hotel and walked through the slowly turning automatic door, I could see her face, smiling from her perch on a table in the middle of the lobby. We hugged hard and long. She engenders such love, light and peace, I felt like I could have just melted away in her embrace. I haven't physically seen Kathy since April 28, 2006, when Ken and I had a small "going away" gathering at our apartment in the San Fernando Valley before we moved back to Chicago. She and Ken had kept in regular touch with each other, and he'd been able to see her on a trip or two back to LA since we moved. They'd had regular phone conversations up until shortly before his death.

Kathy is a unique combination that is sublime and so full of light and love mixed with bawdy and audacious humor. My time with her didn't lack anything. It's a strange thing to find yourself friends with people who were Ken's friends. They were mine too--by proxy, but I was never the main caretaker of those relationships. That's another facet of loss that I'm learning to deal with. So many people reached out and supported us during the past two years, and I'd like to be able to connect with each of them--whether in person, email or snail mail card--but it doesn't always occur to me to do so, and doesn't always seem possible. I guess it's just daunting. Or maybe I'm doing enough or as much as I can. Regardless, my visit with Kathy was as colorful as Kathy herself is.

In anticipating our visit, I felt more like I was going to visit with a friend of Ken's, but as I lost track of my multiple neuroses, I knew I was sitting and talking with a good friend of mine. I was happy she brought up Ken and we were able to talk about him, lovingly and harassingly. I told her (and she agreed) that he would be so happy to see us sitting together, talking, harassing and loving each other. It felt so right.

The Good Kind of First

Since I DVR everything I watch, it's rare that I catch a commercial--which is why I'm so out of touch on pretty much everything. But the other day I was distracted while watching the boob tube and forgot to fast forward through the commercials. There was an advertisement for the movie "50/50" with that kid--who is hardly a kid anymore--from "3rd Rock from the Sun" and Seth Rogan (who I have a comedic crush on). When I realized the movie's description was encapsulated as a "comedy about cancer" I knew that was going to be the first movie I'd ever seen alone. It seemed appropriate and even something a little stronger than that--though I'm not sure what word would describe it accurately. Ken found comedy during even the darkest parts of his journey. It's not that cancer itself is hilarious, but sometimes life that happens around it--in reaction to it--most definitely can be. I think having a sense of humor about anything gives you an elasticity that is necessary in times of great pain and turmoil. It keeps you from going rigid and shattering into countless jagged pieces.

The weather that day was odd. As I walked up Lincoln Avenue to the Davis Theater, there was a huge patch of cloudless open sky with the sun beating down on me, the kids practicing football and the group of old Eastern European men playing Bocce Ball in Welles Park. But on all sides of us tall, threatening clouds were stationed--waiting for the sun to take a powder, it seemed. It was a striking visual on a scope which unfortunately my iPhone couldn't properly capture. But it's another note that will forever help make this day memorable for me.

I was catching the last matinee and figured there would only be a handful of people able to get home from work so quickly in order to make a 5:30 pm show. I'd purchased my ticket online as added insurance that I would actually go. (I hate waiting in line or dealing with people if I proactively take care of it online.) To my surprise there were about thirty people in the theater to see the same movie. I think I was secretly hoping for fewer people "in case" I was blubbering, but I'd have to trust that the darkness of the theater would be enough camouflage to hide the identity of "the cryer."

Once I was sitting there waiting for the movie to start, I wondered "now why is it that I have never seen a movie by myself?" I actually couldn't figure it out because I was pretty excited--even about seeing the previews. Again, not watching commercials I don't even know what movies are coming out. But for a few long minutes before the movie started I could see enough to notice I was the only solo person there. And the couple behind me were clearly on a date and speaking to each other in low, hushed tones. Though my solo-movie phobia predates Ken, I was struck by what a shared experience movies had been for me, and that I didn't have anyone's hand to squeeze during a touching or scary part or to speak to in low, hushed tones--though I used to.

"Stay in this moment."

"Stay in this moment."

"Stay in this moment."

The movie was pretty much everything I expected and hoped it would be. Ken could have written it--and starred in it. For me it was filled with "familiar" moments. I laughed a lot. I cried a lot--sometimes during "insignificant" parts that I don't think many people would understand as touching or emotional. But by the end, the entire theater was filled with sobs and sniffles--as you might expect. At one point the woman in the row in front of me was crying so hard and for so long I felt a great relief in knowing I was clearly not the hottest mess in the theater. Thank you, lady. Thank you.

After the movie ended, I reached into my backpack to pull out tissue I was too hesitant to get during the movie because of the noise the Velcro closure would have made when I ripped it open. As the lights came up there was a symphony of nose blowing, throat clearing, and congested laughter.

This had been a shared experience, after all.