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:

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.

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.")

As The Birthday Approaches

It's impossible to no think of Ken…period. But as his September 21 birthday approaches, he's on my mind more and more. It's not all sad, in fact, thinking about this weekend one year ago brings nothing but a smile to my face. I'd arranged for a couple of surprises. We were both working full days at home at the time because he was receiving daily radiation treatments. As 5 pm loomed closer, I became more and more excited. After work, we always headed out to the backyard for cocktails (for me) and mocktails (for him since we were under the impression he couldn't partake. I went out first with our drinks and sat them down on the table, but just around corner of the back of the house two Californians were eagerly awaiting to perpetrate the surprise. Ken was an expert at pulling surprises. They were alway magnificent and multi-layered. Pulling them off on him I'd learned over the years was almost impossible. But I think we had him.

I went back in to wheel him up the ramp. He was undoubtedly dealing with pain in spite of the narcotics. At this point he was just happy to be spending the evening with me. But as I moved him to the table and his head lifted to look at the yard, his gaze was drawn to the back corner of the yard where his brother Craig and sister-in-law Katie jumped out and yelled the proverbial "SURPRISE.' I wish I'd had the presence of mind to take a photo of his reaction. It was beyond shock, yet the corners of his mouth began lifting. We had done it! He couldn't believe they were here, and even more, he loved it that they were here, and probably even more excited that I'd collaborated with them to pull this one over on him. I remember how moved he felt, and how grateful. He hugged them both for a very long time. It's a moment I can relive on demand. It was so special and full of so many meanings. It's treasured.



We sat around outside and talked and laughed A LOT. I made chili and cornbread that we ate al fresco as we continued our fun fest. It was an amazing day. I don't think he could have been any happier if he tried.

Knowing Mr. Body in Motion, the question was posed as to what he wanted to do for his birthday. So the next day we set off for the Lincoln Park Zoo and its neighbor the Lincoln Park Conservatory (which has always been a preferred destination for him.)



We spent the entire afternoon there there, exploring and observing the animals before heading over to the Conservatory to check out the fauna. It was a perfect day for him. We all too great care of him. I remember feeling how nice and safe it felt to be out traveling with him with Craig and Katie serious back up. The four of us have a very strong, loving, and humorous bond.

The rest of their visit we just hung out and cooked and fed our faces and talked and laughed. Our time together is always easy and always filled with laughter.

The one last surprise I had to present to him was a book I'd been putting together for months called "the ken-do dictionary" as an homage to his body-in-motion attitude. I'd solicited words from friends and family that could be used to describe him. And no one disappointed.

Click the graphic to see the book.

Nostalgic by nature, I've been thinking a lot about that weekend on this anniversary. I'm so grateful that Craig and Katie were able to come. Ken (and I) had a wonderful time with them (as usual). It was a weekend I'll never forget and will probably think about a lot. I'm not sure how I'll feel on Wednesday, but I have taken the day off and am hoping to mimic some of the activities we did last year.

A Generous and Welcome Gift

As I've written before since Ken died, "firsts" are difficult--both figuratively and literally. It was June 1st when Ken left us. Today marks the three month anniversary of losing a man who brought a texture, depth, dimension and a sense of play to my life that will forever be unmatched. My head knows those things didn't leave with him, but my heart has very different and stubborn opinions about that. I couldn't help but think of him today--and thinking about the day when I lost him. All the emotions and some of the pain surged back; however, today was also one of those days I was able to mitigate it and not let it take me over. Solemn, but not parlayzingly sad.

I think part of the reason I had the control I had is because of a wonderful experience I had yesterday. Something unexpected, but welcome happened. I went to a luncheon yesterday for my group at work. I had misgivings about going at first because I was afraid that--though well-intentioned--I would feel overwhelmed by well-wishers who knew of Ken's illness over the past year. But a I sat at my desk, he spoke to me in a way. "Why not?" echoed in my head, and I somehow felt empowered and decided to go. It was late enough in the timeframe when I arrived that it wasn't very crowded, but the few people I saw were so sweet and kind, talking with me and asking about how I was doing. It wasn't upsetting in the least. It was reassuring…and just lovely.

When I finally sat down to eat my lunch, a co-worker came over and asked very politely if he could sit down with me. "Of course," I said. I didn't know him well or work with him directly, but whenever I saw him we always exchanged pleasantries and smiles. He asked how I was doing and expressed his sympathies for me and my loss of Ken. He told me we'd both been in his prayers and that I continue to be. Then, the conversation took a turn I never would have expected. He shared with me that several years ago, he'd also lost his partner. It had been more sudden than my situation with Ken, but as we talked I'll never forget how I began to feel--in a "good" way. For the first time ever since losing Ken, I was talking with someone who knew EXACTLY how and what I was feeling. And it meant a great deal to me. It was a mixture of sanity and depth of understanding I'd never felt before.

I'm lucky to have the friends and family that I have to lean on and grieve with, but what I found stunning was that someone--with no emotional stake in me--would be so brave and so generous to share such a life-altering loss with me. It didn't necessarily surprise me, but because I didn't know him that well, I found it utterly kind and courageous. He spoke from a perspective that I have only seen glimmering mili-seconds of, but I found it comforting and reassuring nonetheless. I hadn't been having a bad day, but this experience turned my day into something exceptional! My mood for the rest of the day was light and positive and encouraged. In spite of the fact this is a blog, it's difficult to explain all the nuances in words.

In addition to all the people in my life--at home and at work--his act of selflessness in discussing something that I know I couldn't possibly talk about now with any level of comprehensibility, sort of…how do we say…"restored my faith in humanity." When someone who doesn't know you that well goes out of their way to share something so private and potentially painful in order to help you deal with your own personal hell, it swells one's spirt. It goes back to "connecting". Our loss connected us on a level that isn't something you ever aspire to, but it offers a comfort that is unparalleled.

I think what is remarkable--not coincidental--is that I was in a place where I could receive that kind of generosity and know what to do with it. I hope I am that kind of person someday. To be able to reflect on and discuss this heart-wrenching loss with kindness and compassion in order to help someone--whoever it is--deal with it or see it just a little differently. To help them heal. To give hope.

It's hope we all feed on and what we all need.

Belonging

It's not often I'm able to get together with four of my closest friends--at the same time. The last time all five us were together was at my birthday a couple of years ago, where Ken orchestrated two of them who came the furthest (St. Louis and Los Angeles) as surprises. Alan, Kathy, Retta, Tina and I comprised "the A-List"--what we named ourselves when we met while studying at Second City--and they have been constants in my life ever since. We share the "wrongest" pleasure in harassment of each other as much as we are fiercely protective of one another. Having grown up the outsider in many ways, and the one who found "apartness" so appealing, the A-List was the first group I ever felt like a belonged to. It was my tribe…finally and effortlessly.

I've been in contact with all of them in one way or another always, and in particular, since Ken's cancer returned last year. I was checked upon and double-checked upon; I have called, texted and emailed while I vented or cried or ranted. I can imagine there may have been communications among the four of them I'm not even aware of. So, it was with great relish that I looked forward to the four of them converging on my apartment this weekend for a long-anticipated and much-needed reunion. There have been few times in recent months where sorrow isn't something that I have to actively combat. The time spent with the A-list is one of them. I remember noticing that in between laughter and conversations and jabs; that I felt transported and "normal" and loved. During the time I spent with them I didn't feel empty or missing anything. I was whole--complete in every way I needed to be--and loving every single second of it.

There is a power and an energy that is purely magical when the five us are together. And though the anticipation sets the bar high, the actual time together always exceeds expectations--and boundaries. There are certain things that can be counted upon in such cases: ripping on each other mercilessly, mad laughter as a result thereof, and the same reminiscences about "the good ol' days". Old stories shimmer like new with long-forgotten nuances, uncovered and embellished.

I was excited to have company so I could get busy in the kitchen and try out some recipes I've had ear-marked for quite a while. Feeding these people I love so much, and hearing their voices and laughter fill my back yard all afternoon and evening--then my apartment as we moved indoors later in the evening--filled me with a sense of peace and security that was both familiar and foreign. Knowing I have these people in my life with their non-stop love and unfailing support of me is great source of strength.

In spite of the fun of the weekend, Ken was never far from my mind--as always. He loved the A-List--perhaps an acquired taste for spouses to manage--and he appreciated what I had with them; and what they gave me. When it came to having company, Ken was the master chef, getting creative and delighting in serving tasty morsels to our guests. I'm sure that's at least part of the reason why I did too. Doing things he loved makes me feel connected him. Honoring him in even the smallest of ways makes me happy. He loved our friends and he would have loved seeing all the goodies I made: Lemon Blueberry Buckle, Blue Cheese and Walnut Crackers, and Goat Cheese and Sun Dried Tomato Profiteroles.

I wish I could feel the way I did this weekend every day--especially in light of an impending Monday. It's impossible to come off such a high without wishing he were here to end the weekend with, talking about all the verbal debauchery, reliving it and laughing at it. Regardless, it was undeniable that Ken was here this weekend; inspiring me to get excited and creative in the kitchen (not to mention to sweep the patio--something he did without prompting every time we had company). He was also here in another very special way. Our friend Bruce competed in the Chicago Triathlon today in memory of his sister-in-law and Ken. It was a beautiful gesture that is so fitting of Ken.

He was definitely here this weekend--just not in the way I wish he were.

Writing and Rambling

I have always loved the idea of sitting at a coffee shop and clicking away on the keys of my Mac to some stunningly witty piece I was working on, but in truth sitting alone has never held much fascination for me. Alone at home is one thing. Alone in public has always been quite another. Same with restaurants and movies. I've still yet to see a movie alone, but is still something I hope to accomplish.

The lure of writing outside the house is just that--to get away from the same old distractions and finding new ones seems attractive! But today I knew I needed to get away. It had been a difficult day. I had Ken on the brain and couldn't stop punishing myself with photos, words and memories. "Dosing" myself seemed a bit out of my control. What set it off was getting a call from Costco that the old video tapes I'd dropped off in July had been converted to DVD and were ready to be picked up. I barely remember hanging up the phone and driving there, I was so entranced by the idea of seeing and hearing Ken. One tape in particular detailed our move to Los Angeles in 2002. We packed up our lives, our Chow and each other and drove for nine adventure-seeking days in our Geo Metro. It was the boldest thing I'd ever done.

As I watched the DVD, no tears. Just a unshakable grin on my face, hearing and seeing him and my beautiful puppy Quantum. I'd forgotten the nitty gritty details, but what I could see was we were clearly in love and obviously excited about the future. I so clearly remembered how secure and safe being with Ken made me feel--from the get-go. He just had a way of handling change--and always did. He could take the edge off of any new situation for me and make it okay. It's still hard not to feel that sadness when I think about that particular benefit of loving--and being loved by--Ken. Everyone wants to feel safe and loved. And I did in spades.

In spite of almost talking myself into writing at the patio table, after work I grabbed my Mac and some supplies and headed over to a coffee shop nearby that we'd always talked about trying out. And it's from there as cars glided by from the stop sign on the corner that I wrote this blog. I saw some beautiful pooches parading by, teasing me with their "shiny hineys". I watched two friends part company on the corner as I gathered one was moving far away. They both kept it "light" but it was clear they were both quelling a lot of emotion. It was an interesting exchange to watch--objectively. And I was happy to play no part in it. She had chunky glasses and purple hair. He had a close-trimmed beard, and by the way he flamboyantly called her "guuuurl" was pretty much gay. I imagined he'd finally saved up enough money to transfer to a Kinko's in San Francisco--the "mother land." Clearly, I have tools for keeping it "light" too. Damn my distraction-seeking imagination.

I spent about an hour going through our book--which I compiled in hard copy the other night from things we'd both written--and edited some parts I'd written a while go. I also tried to work on how it will be organized. It's exciting but daunting, and getting out of the house to begin tackling it was the right decision. I unwittingly became one of "those" people who sit outdoors at coffee shops and talk too loudly on the phone to compete with the traffic whisking by when my friend Beth called me to check in on me.

After two hours I was chilled sitting in the shade, and decided to pack it in to head home. I felt accomplished that I'd finally gotten away. It did make a difference in my ability to focus, and I'll do it again. Unfortunately as I walked home I realized I no longer had possession of my wallet--which I'd had when I bought my cup of coffee earlier. So I did an about face and headed back to the coffee shop. I'd called on the way, and she'd found it--on the ground under the table I'd occupied.

Clearly, I have some packing glitches to work out before I make my next coffee shop appearance, but taking a page from Ken's book, shit happens, but it's how you handle it that determines its weight in your life.

Some Assembly Required

Last year after Ken had surgery and was recovering from 12 weeks of chemo, we were optimistic about the future. So much so, I decided to write a book, documenting everything he and I had gone through. As a chronic journaler who keeps a detailed calendar and diary, I had plenty to draw upon. I began pounding away at the keyboard in the evenings--sometimes in my office if he was sleeping--and sometimes sitting on the couch with him in the living room as we watched TV and talked. When I explained what I was doing, he said he wanted to write a book about it too. He'd already written a one-man show called "My Foot Left" that was well-received by audiences in Chicago and Los Angeles. I suggested we collaborate. It's something that we've always done well together. To get him started, I sent him what I'd written so we could figure out if I was going in the right direction or if we needed to make some tweaks.

As the summer wore on and August approached, bringing with it another diagnosis that ultimately had no curative measure, the book fell to the sidelines for both of us. I still journaled--a lot--but I thought I knew the ending to the book I was writing and went very much along the lines of "they lived happily ever after…" Endings in general were something I stopped thinking about it. We were both facing one that we didn't want to come.

In recent weeks I've looked over the draft I started because I was ready for it became important to me again. To tell our story…to tell Ken's extraordinary story. After meeting with Claire last week, and receiving so much encouragement from her to continue pursuing this, it has been in the forefront of my mind.

So, this evening, I pulled out the external hard drive that I'd recently pulled most of the documents from Ken's computer onto and sat on the couch going through them. Never really regarding himself as a writer, I was stunned by the prolific amounts of writings I found--many of which I'd never seen before. It stung a little bit at first, but mostly it was fascinating and made me so proud. That he'd knowingly or not, left so much of himself in these writings to help me tell our story. I could hear him read each and every word, and it made me smile.

I was overwhelmed trying to figure out how to organize all the potential pieces that would be included but I set up a system that will work for now. Once I have most of what was on his computer, I'll go back to structuring and seeing how it would best serve the story. Aside from that, I have old diaries of both of ours to go through which I'm kind of excited about in a very I-shouldn't-be-doing-this kind of way. But as a journal, I know there is gold in them there mines.

But my mood all evening was focused and happy as I worked to gather the pieces he'd written. It's exciting that I can still do this for him--for us, and share something that has to be shared. It's not so much I feel that I owe it to him, but that I owe it to myself in order to honor him and his extraordinary outlook and legacy. It will take a lot of time to put it together, but it's a project I'm really looking forward to tackling and doing it well.

Another way, I suppos, I can make sure he isn't forgotten--if that's even possible.

Connecting

I have to admit while I was walking up Lincoln Avenue to the Tiny Lounge last evening I had butterflies in my stomach and was filled with a medley of feelings that ran the gamut. I was excited to see Claire--like "date" kind of excited, perhaps not knowing what to fully expect or maybe expecting too much. But the grin on my face and the fast pace of my step reminded me to let everything else go and love the anticipation of seeing a good friend.

I first met Claire Bidwell Smith on March 31--the very heady week after Ken came home from the hospital for hospice care. Luckily for us at the time she the grief therapist with Advocate. She and Ken connected instantaneously on her first visit. It wasn't only because of their connection that I felt a connection with her as well. Watching, seeing, and feeling the energy in our house when she was here could inspire nothing less than the most sublime confidence--something I couldn't help but lack. At a time when I was frayed, exhausted and sometimes actively ignoring despair, Claire's visits offered a satisfaction and a security that--at the time--was rare for me. Ken loved spending time with her. And the three of us spoke more than once that had we met under different circumstances we would have become good friends. Yet the three of us knew, in spite of the circumstances--not because of them--we did became friends. Some connections are undeniable.

Claire visited with us weekly during Ken's home hospice days until she left her role as grief counselor to move to LA with her husband and daughter. I'll never forget the last time she was here--to say goodbye to me--and even more impossibly--to say goodbye to Ken. He understood she was leaving and was excited for her, but of course, he was having a difficult time with saying goodbye to someone he loved, knowing he wouldn't live to see her again. I'll never forget that day: May 26, 2011, a week before he died.

I always remember answering the door when Claire came over. My day was muddled with household tasks caring for Ken, and living only for the next moment, but always when I saw her, there were milliseconds that went in slow motion in my mind's eye where the tension in my shoulders eased and the comfort I felt in knowing how much Ken loved her and loved spending time with her assuaged my fatigue and gave me joy. If I left them alone in the front room, I inevitably heard exuberant laughter following shortly afterward. It was like the sound of brightness.

Not having seen her since that day in May made me wonder if I'd burst into tears and cry hysterically--or intermittently--when I met up with her. My "what if" had to wonder: would it be more painful than blissful? Did I see something that wasn't really there in my pre-grief? Would our only connection be loving and losing Ken? Not surprisingly, the answer is a complete, resounding and vehement "NO!" My affection for Claire is the real deal, and when I came upon her at the outdoor seating area where met I couldn't wait to get to her and squeeze her hard. And I did.

The next time I actually thought about my emotions about seeing her, I was sitting with a close friend, talking seriously, joking bawdily and smiling unabashedly. As my old "what if" habits watched me connecting with Claire as I would with any of my close-knit circle of friends, we both talked about how much we loved and admired Ken, and how there was no way he wasn't someone watching us together and loving it. Claire is a writer--an amazing writer. Aside from being an avid reader of her blog, a personal memoir about her journey with grief after losing both of her parents comes out on February 2, 2012. Her fearlessness and honestly in sharing parts of this journey has inspired me since she told us about on one her visits with us this past spring. There is a subtly in her wisdom that I value and greatly admire.

Over a glass of Chardonnay and appetizers, Claire recalled the last time she'd seen Ken on May 26, and shared a private moment with him. She knew it was the last time she'd see him, yet in her role as care giver and friend, she asked him if there was anything he wanted me to know when he was gone. She typed what he said verbatim on her iPhone and saved it in her email to wait for the right time to share with me. Last night was the night. She forwarded me the email as we talked. And as much as I was curious and almost desperate to connect with Ken via this message, I've only recently learned to "dose" my mourning in order to spend my time in the present--with my friend Claire.

After I hugged and kissed her twice, and told her how much I love her, I walked back down Lincoln like I was in a race. I couldn't stop thinking that when I got home, I was going to be able to connect with my husband with words he spoke to Claire on the day etched in my memory. It was exhilarating and terrifying. But for me emotional fear is hardly the terrorist it used to be. I purposely slowed my pace about half-way home and enjoyed the beautiful warm night air, the starry skies above, and the memories I'd made with Claire--with thoughts of many more to come.

Once home, I poured myself a glass of merlot and sat in the back yard, surrounded by memories and the garden he once so passionately tended.

Deep breaths.

Eyes welling.

Chin quivering.

And I read aloud these words Ken wanted me to hear, to give me comfort after he was gone:

I still am.

Together we still be. We're still here. We still exist together.

My heart surged and re-broke a thousand times as I repeated the words over and over, as if chanting them to conjure him physically or spiritually. My vision blurred until I couldn't read the email anymore, though by then I knew it by heart. My voice fell silent. I was dumbstruck by these words, Ken's beautiful intentions, and the loving messenger who had delivered them to me when I was ready to hear them. I surrendered to my emotions and utter blithering, and slumped in the chair, head tilted to the stars. I felt the weight, love and honor in his words to me. It was a solemn moment and ineffable moment.

Then the river of tears eased. These words embodied what I have never stopped believing. It was another affirmation that we had been of the same mind. It was a connection to Ken that I knew was always there, but hearing these words--spoken back on that day when he was so sad about so many things--I could love hearing them (or at least be able to hear them) as I continue to love and honor him and our life together. Understanding what we were together, and what we continue to be together is a cornerstone of the journey I've set out upon. No, it's not the same. It can't ever be. And it will be a long time before I'm okay with that. But this experience--just like loving him--was something extraordinary. And something not to be ignored.

Sometimes you can wake up on Tuesday morning and muddle through the day, all the while aching for something that's lost to you. And sometimes you can go to bed that very night, knowing things you never imagined you'd have the privilege to know.

Ken was always giving me little gifts, and that hasn't changed.

Going Home

PadLo was up and ready for an adventure! So after securing him into the back seat, we set off for my small hometown in Indiana for a weekend visit.

There was a time when my dramatic storyline-driven teen self regarded my hometown as Alcatraz Island, my house as the actual prison, and my parents as tyrannical co-wardens. I was the wrongfully imprisoned character. But those days and feelings waned long ago. As I matured (and I use that term loosely), I grew to realize how lucky I was to be raised in that little rural town and even luckier by those two over-worked and under rewarded people. I never dreamed I'd so look forward to going there to visit. Driving into town is like running into the embrace of an old friend.

I’d been talking about getting out of Chicago for a while, and finally took the opportunity to plan a weekend getaway to my home town to spend some “down” time and relax with my family. There is something strong and protected about the house I grew up in. I knew I couldn’t completely escape pangs of sadness, but I was definitely in a place--physically and emotionally--where it couldn't get the best of me.

It was the first time ever, as I left Chicago that I didn’t feel a little morsel of regret. My connection to Chicago is immutable. It’s where I “became”, and leaving it usually incites even the tiniest bit of anxiety in the pit of my stomach. But not so on this trip. I was all smiles as I slugged back my home brewed coffee and belted out the vocal stylings of whomever was playing on my iTunes play list. PadLo joined in on the verses he knew.

When I arrived early on a beautiful August afternoon, I grabbed my overnight bag and PadLo then headed inside. I was a little surprised no one greeted me outside since I arrived pretty much right on schedule. I put my things down inside and still didn’t encounter anyone. I walked to the back of the house and saw my parents and one of my sisters sitting on the deck, talking. I felt such a sense of peace and comfort that I actually stopped and watched them for a few minutes. I loved seeing them gesturing and laughing with each other. It was one of the memories that I took the time to etch into my brain.

Dinner was ready by the time my other sister arrived. One of my favorite parts of the day was sidling up to the raised bar in the kitchen where we sat and ate like we did growing up. It was the first time in recent memory that it was just the “Original Five” of us, and it was a really special. Lots of harassment and laughter shared over the table were just as delicious as the steak and farm fresh corn on the cob.

Going back to Remington was meaningful in more than just seeing my family. There is a happiness that existed within me that pre-dated Ken--well, it predated most every other part of my life since I lived there since I was two. It was important for me--and it felt really good--to connect with it.

I’ve always been nostalgic, and taken great comfort in warm memories of the past. Over the past weeks I’ve tried to connect with happy times before I met Ken--not to ignore or deny him, but more to illustrate and remind my sometimes fragile psyche that my life is full of many different kinds of happiness, and in working through my grief, there will be more happiness to come.

After my sisters left, my mom drove me around to town to show me the sights that I don’t think I’d seen for more than twenty years. In the intervening time, I’d arrive at my folks and never get out to see anything else, so I was really eager to see what other parts of town looked like. We drove past the old town park with the same curly-Q slide I used to play on as a child; the new elementary school that was demolished and rebuilt as soon as I left it (coincidence?); and of course we drove down Ohio Street (the main drag) and passed the dime store of broken dreams (pictured, now an antique store, but with the same black and white marble running under the display windows).



On this visit I spent a lot of time floating aimlessly around the pool with my mom and sisters as Dad looked on from deck. My mom and I engage in friendly oneupmanship while my sisters act as sometimes-willing targets. Mom told the stories we’ve heard over the years of how she and my dad bought what used to be a Baptist Church and converted into a home that housed five people, two dogs and innumerable visitors and gatherings. More comforting and happy memories while making new ones.

I spent a lot of time not feeling sorrow--and it felt good. The dynamic of my immediate family is undeniably funny, good-natured and ever supportive. They all take my harassment and quick wit in stride. But when the five us are together, there is something that feels so comforting and loving about it. I felt protected and cared for. And I felt free to experience whatever emotions I had, though fun and laughter easily dominated.

Everyone should be so lucky to have such a wonderful family--and one that gave and continues to give me such unbelievable fodder for blogs!

Ojai, How Are Ya?

Like most small town kids, I had a 25" console television in my bedroom when I was growing up. I was a shy, introvert who spent hours alone, entertaining myself. But no matter what I was doing, the boob tube was on, beckoning me into one zany adventure after another. I made many friends in the land of make believe. At the top of my list are two people: Steve Austin and Jaime Sommers.

Jaime (yes, that's how she spelled it) was one of my closest childhood friends. Steve Austin and I were tight too, but Jaime embodied much more of a fun contrast for me. Cute. Sweet. Funny. And could kick some Fembot or Bigfoot ass when called upon to do so. She could also chop vegetables faster than a Cuisinart and when faced with no can opener, could use her bionic fingernail to get at those baked beans. She was the whole bionic package. She, Steve and I shared many bionic adventures together. As a lazy kid, it was fortunate that in order to play "bionic", I just had to move in slow motion. This kid wasn't going to break a sweat!

I was giddy to discover Season 2 of the "Bionic Woman" was available on DVD in May, and I snatched it up as soon as it went on sale. Ken was sleeping more then, so after the house was quiet and kitchen was clean, I sat in front of my computer and watched a couple of episodes. It was like an emotional orgasm of childhood, bringing back the wonderment and security of childhood. In spite of the wonderful distraction it provided, something told me to put them away; and that they would better serve me later. Soon after he died and I found myself alone and never in great need of a distraction of bionic proportions, I pulled out those DVDs. And they served me well.

My obsession with Jaime made for a couple of my very favorite outings when we lived in LA. Always up for a day trip, Ken asked me one weekend where we should go. I didn't really know how far away it was, but I suggested Ojai, where Jaime Sommers lived in rustic apartment above the horse barn of Steve Austin's mother and step-father. (GEEK ALERT: They had also become her legal guardians when she was a minor because her parents died.) After the couple-hour drive, we explored the quaint town and had lunch. We took a drive out of town into the Ojai Valley and passed some beautiful olive farms. We drove through some tunnels that had been blasted through the mountains, and stopped to admire this subtle and beautiful waterfall.



Further down the same road we happened across a state camp ground. I'd never been a camper before I met Ken, and he'd taught me to love it. So we made plans to return later in the month for a long weekend. Little did I suspect that he'd hatched a plan to bring Kathy, one of my Chicago besties as a surprise. It's one of my favorite memories. My bionic obsession was well-known to Kathy. She revealed to me late in our friendship that while on a trip to Universal Studios in the late 70s, that she had been chosen from a tour group to be "Jaime Sommers" in a tug of war with several large burly men. In true Hollywood fashion--sound effects and all--she yanked the rope and dropped all the would-be assailants to the ground like potato sacks. It was extra special to share an evening under the stars with her in my beloved Ojai. It's funny to think of all that as I watched those episodes and felt the comfort of those few nights by the camp fire with Kathy, Ken and Q. It gives me just as much comfort now.

However, was it completely coincidental that I fell in love with a handsome hottie with a bionic leg?

The bionic theme continued at Ken's soiree--which took me completely by surprise--and only enhanced the experience in a very special way for me. During the prep for the event, my friend Terry presented me with a gift bag. Along with pushy Kathy, they both insisted I open the gift in front of them. Opening gifts in front of people is an IBS-inspiring moment for me. As an improv teacher once told me, I'm just not that good of an actor, and contrary to popular opinion amongst the rapscallions I run with, I don't (always) enjoy seeing people cry in disappointment. But this surprise made my heart leap.

In true 70's "women's lib" fashion, it's the Bionic Woman's Bionic Beauty Salon. No, of course, it couldn't be Jaime Sommers Covert Ops Training Center! Who the hell would buy that? Oh, wait…me. Of course, I would have begged for it if it were The Bionic Day Care Center (bionic pooping babies sold separately). But I think the point is Jaime had choices--a pink house coat or her tennis whites…hmmm…life is full of difficult decisions, no? And of course, a photo of pseudo-boyfriend Steve Austin is displayed prominently to remind Jaime why she has to be beautiful. And finally, in spite of the geek-known fact that bionic skin doesn't tan, there is a huge nuclear-powered sun lamp center stage at the salon. From the brilliant, in-touch minds of Kenner!

Make no mistake, I love my Bionic Beauty Salon. Watching the show recently--like watching it when I was a kid--enveloped me in a world where people could do things that were surprising, if not superhuman. It was a message that resonated with me--and still does. I'm no former-tennis-pro-turned-undercover-8th-grade-bionic-teacher-who-saves-the-world-on-a-weekly-basis-and-looks-vintage-doing-it, but my life--like everyone's--has been faced us with situations and people that we found overwhelming, yet somehow found a (perhaps surprising) way to overcome it. Hence, we are a little bit bionic. Watching Jaime kick some bootie reminded me that she was in a sense (as I imaginarily inserted my character of her younger brother Brody into all story lines), and as i watched them a few weeks ago, she was doing the same thing: protecting me--this time, emotionally. Focusing my mind on something so magical and fun and fraught with good memories made me feel so good and it placed a short moratorium on sadness. It's a weird connection to the kind of naive strength and ambition a kid can have--before society beats it out of him.

Now I have a little bit of Ojai sitting in my living room--as well as a huge target on my forehead for mocking by aforementioned rapscallions. Mock away. I have to brush Jaime's hair. Steve just called and said he was running over--at 60 mph no less. Ugh.

Ken's "Leg"acy

This time last year Ken and I were spending a lot of time with his amazing prosthetist David and his team at Scheck & Siress at UIC. David created built the most mind-blowing prosthetic leg for Ken and after multiple fittings Ken was rocking it like--well, like only Ken could. (Click here for video. Both "high fives" are with David.) Two people who worked on David's team had leg prosthetics themselves which helped create a secure and supportive environment. Going there for fittings was more like visiting with friends than anything else.

I'd meant to donate the prothetic leg to David earlier, but I hadn't been ready to face actually doing it yet. Regardless of the good it would do others, it was still a piece of Ken for me--a really important one. Some of the best memories I'd had with Ken in the past year and half--and certainly some of his proudest moments--involved him using that leg. I'd emailed David previously to let him know I wanted to donate the leg, and followed up with him earlier this week to see if he'd be around on Friday for me to drop it of--as well as see if he could use Ken's wheelchair and some other medical equipment.

Aside from the amazing work David does for Scheck & Siress, he also volunteers his time for an organization called the Range of Motion Project (ROMP) which goes to third world countries or disaster areas to fit people with prosthetic limbs. It was this organization to which I was donating the leg. Ken was riveted as David talked about he and his team going to Haiti after the earthquake, and upon our last visit David was preparing to go to Guatemala. If Ken were still here, I'm positive he'd be accompanying David and team to Central America for their next visit (volunteers are welcome).

I hadn't seen David since Ken's and my last visit there in September of last year for another fitting and more practice--though by then Ken had taken the leg home and was using when he could. David had let me know he wasn't able to attend Ken's soiree because of his patient load, so I was looking forward to seeing him, yet with most "firsts" since losing Ken there is a bittersweet edge to be dealt with. Some of my happiest memories were in those basement offices, and going there alone to see people who he'd had such an affinity for (and vice versa) was daunting.

I knew he'd be busy with patients, but after I dropped everything off, David made time to come out and speak with me. After we hugged, we talked for a few minutes; about the soiree; about how I was doing; about how he was doing. He looked the same as the last--and every time--I saw him. His face and body language engender trust and kindness. He thanked me for the donations and went on to tell me a few things that I found--and still find--utterly amazing.

He has a new patient via ROMP who he will be donating his time to. This young man (20 years old) from Poland recently had a left hemipelvectomy (same as Ken--which is a very rare surgery), and with no insurance will benefit from the use of Ken's leg. Those of you who know me (and my last name) know that I'm Polish, but Ken was actually more Polish than I am. Not sure if that means anything, but I, no longer a believer in coincidences, found it interesting. David went on to say this young man is of similar stature to Ken, so adapting the leg for his use should be of little concern. Even more, he generously offered to send me photos of the fittings as they progress so I can see Ken's leg as it morphs into this young man's leg. I am thrilled beyond words to share in this experience. Without infringing upon the recipient's privacy, I'll do my best to share photos from time to time. So many things feel right. It's obviously meant to be.

It wasn't until later that evening where I had to take another step I hadn't expected. A prosthetic leg was a part of Ken--whichever one it was--since I'd know him. There was always one in the house whether he was using it or not. And now it was gone. So many hopes were pinned on that leg. For a while, it was what made what he'd gone through "okay" in many ways. Just that there was a prosthetic for him after such drastic surgery was astounding--let alone how quickly he adapted to using it. The day's events made for quite a difficult evening for me. But as a friend pointed out it was another step--another journey--which in the end helps me to continue to process my loss and to grieve.

Aside from my moments of sorrow, knowing how thrilled Ken would be to know his leg was going to someone who could make good, long use of it offers me great comfort. David felt similarly in saying he felt the timing was uncanny, and it was Ken saying "here you go, kid", and I don't disagree.

I so look forward to the journey via photos of this young man is embarking upon--with a charmed piece of Ken to help him find his way.

Once Upon a Time...

When you're truly happy in your life, and loving it, that's when things get even better--at least in my experience. I'd spent my twenties dating unsuccessfully and lamenting the fact I didn't have a boyfriend. It became my "schtick." Most all of my friends were coupled, and making fun of my singleness became my way of coping with it. When I turned thirty I opened myself up to meeting someone online--the advent of computer dating. What followed were a string of disastrous--albeit, funny dating experiences. (Blogs to follow!) About a year later, something changed in me. I looked around my life and realized how lucky I was. My choosy nature had surrounded me with a close knit group of friends. I had a job I excelled in, and I'd completed a long-standing dream of attending Second City's two-year improv training program and conservatory. My life was full and happy, and my dreams were mine for the taking.

On this cold night in March I treated myself to a night out to a little neighborhood bar near my apartment. The bartenders were friendly and the crowd was usually chock full of smiling regulars. It was unlike the bars on Halsted in that it was tiny and tucked away in quiet Ravenswood. I remember it was unusually crowded that night and I was lucky enough to be at the right place at the right time in order to get a seat at the bar. One of the bartenders hooked up me with a cocktail (probably a cosmopolitan), and as I sipped it I surveyed the people around the bar, not really looking for anything in particular. Just being. My eyes caught sight of a handsome man sitting further down where the bar turned. He looked familiar. And did I say handsome? Woof!

Then it clicked. It was Ken. This night wasn't my actual first meeting with him. I'd first meet him a couple of months earlier (January 12 to be exact). I happened upon him that night as he sat alone against tiny bar that lined the wall, drinking a beer and scribbling on a piece of paper. Imbued with the confidence only a vodka-tonic can instill, I sat down next to him and asked what he was writing. I slid the paper away from him and toward myself and boldly read it--or rather pretended to read it. (Hey, I was just looking for an "in", people.) We enjoyed some playful banter which somehow led the conversation to theater. He was an improviser himself. I remember being so excited to have someone to talk with about improv. I never performed professionally, as he did, but the thoughts, comments and experiences we had were common. However fun that night was, it somehow went off the rails for us through a series of misunderstandings. We parted that night abruptly, and though I was sad that it hadn't worked out more to my satisfaction, I relied on my new outlook to get me through. It apparently wasn't meant to be.

Or was it?

Now, back to March 23. When I saw Ken I immediately thought he'd have no interest in me--or might not even want to catch sight of me. Yet I couldn't help but gaze over at him from time to time. He was playing darts with some other guys and seemed to be having a good time, undaunted by my sneaking glances. A little while later, I passed him as I headed to the facilities. He stopped me, said "hello" and re-introduced himself to me. "I remember you," I said, nervously then excused myself to finish my mission. It was an awkward exchange, but I realized "hey, he's not angry with me." That thrilled me. I noticed a while later as he played darts, he was dealing with a very drunk admirer who he clearly had no interest in. When he walked past me again he said as much. This was it! An opportunity to use my improv skills--something we had in common. I told him I'd help him out, and just waited for him to give me "the signal" (a la Carol Burnett tugging on her ear lobe.)

I fortified myself with another cocktail and soon glanced over to see him giving me the sign. I swilled what was left in my glass and boldly marched over to Ken and the perpetrator. Voice low and fuming, I posed as the loyal--and deceived--boyfriend. My tirade sent the ne'er do well transgressor onward to his next victim as he lilted away quietly (like any plant under my care) during our "lovers' quarrel." I grabbed his hand, proclaiming "we need to talk!" and pulled him around the corner out of sight of everyone. "Was I butch enough?" I asked, covering my mouth in the most (intentionally, right?) feminine fashion I could muster. Ken didn't just approve, but lauded my performance with gratitude, his trillion dollar smile, and a drink. We spent the rest of that night talking, laughing and sharing our thoughts, dreams and non-stop laughter.

Seven years later at my 40th birthday party, Ken surprised me with many things. One of the main surprises was asking guests beforehand to write a scene about how each of them met me--then act it out. He wrote a scene the described what I described above. It was a wonderful celebration of our meeting. I actually have that scene--all of them, in fact--on DVD: another gift he gave me. I watched the DVD of the party on my birthday last month. I wondered it if it was the right thing to do, but it so was. I was all smiles--just like I was that very night and at my party. Watching him and my friends re-enact that meeting is an inexhaustible source of joy for me.

As for the "real" meeting, my life was forever changed after that night. Ken and I were together from that point forward. All of the natural fears in getting into a serious relationship assuaged naturally over time, and we just melted into a single unit: the kenron scandal. Yes, we still had our individual identities, but together we were bigger than the sum of our parts. Thinking of that night and this blog as I type it leaves an undeniable smirk on my face. The magic of that night lingers around me.

Thank you for suggesting I write about it, Claire.

Floating, Sinking and Bobbing

Today didn't suck en total. It was my first day back to work with the soiree just a jumble of warm and loving memories. That part feels good, right and fitting. But getting back into what used to be my old schedule feels...meaningless. Ken provided meaning, support and context in my life. I had a moment at work today where I thought to text him to check on him--as we always did. That a slow burn, realizing he wasn't there t receive them. Investing in someone so completely is one of the keys to a successful relationship. But what am I supposed to do now? Half of me has been forcibly ripped away. No more yin to my yang.

I guess what I've struggled with today is something I'll struggle with for a long time. What is my purpose now? Loving him and sharing a life was purposeful--supremely so, but then becoming his full-time 24/7 caregiver was a purpose I never anticipated, and one that wasn't easy on any level, but it was such an important purpose. It was the most important purpose I'd ever embarked upon. Making him comfortable. Engaging him in coversations. Cooking for him. Soothing him. And loving him.

I feel the empty in my life growing. Along with it the paralyzing feeling I mentioned in my last blog. I don't have any momentum to propel me forward. Inertia is my enemy, and I'm not sure I'm equipped to combat it. I've walked around the apartment in a daze, asking aloud "where are you?" How can a person filled with life and vivacity just suddenly not be there anymore? Obviously, I know it can happen, but it can be a real bitch to reconcile. Where did all the love we had for each other go? Is it like energy, which can't be lessened in quantity. If that's so, where is it? Is it around me, and I'm just too mired in grief and confusion to see it? Even as I write this, I know the love is still there. I have felt it--even from within the memories I cradle gently in my head. But it's not coming from where it used to come from.

Ken and I had grown into a one-stop-shop communication hub. We talked about everything good, bad and ugly. Along the way he became my very best friend and champion. Everyone should have a champion. Now I have none. It's not inconceivable that I will once again become my own champion and probably fulfill some of the needs I have that I got from Ken, but that hardly seems as interesting as sharing those experiences with another person outside yourself who knows you better than you know yourself.

Today ran the gammut. I floated. I sunk. I bobbed. Like a flotation device swirling freely in the current. I don't have any answers, and I suppose I don't need to. I'm told they'll come to me in time. I wish they could come from him. And I wish he could brush his hand on my cheek. And I wish I could hear his laugh and see that trillion dollar smile person-to-person. I don't believe ghosts but in this case, I'm perfectly willing to be haunted (in case anyone non-corporeal is reading this.)

But aside from my ridiculous fantasies of seeing him--truly him--again, the substitute will entail a lot of work for me. Looking inside and digging out the meaning and purpose of my life--a life I never asked for or wanted; not this way. They say time heals all wounds. And from my limited experience I know it to be true. But if anyone has a time machine I could borrow, let me know. I could use to travel forward two years or five years and have this aftermath well behind me.

Or, more likely, I'd travel back to March 23, 2001 to meet Ken all over again.

Finding a New "Normal"

Today felt like the beginning...of something. With Ken's Memorial Soiree a jumble of fond memories and feelings, today the remnants of my out-of-state family left to return to their lives in California. There was nothing standing between me and my future. It was a good day overall. Cleaning, laundry and prepping for heading back to work per a traditional work schedule tomorrow. But it was also a bit...paralyzing. I've learned to just keep putting one foot in front of the other. If it weren't for losing Ken, today would have been the day things went back to normal. But, now, what is normal? My new normal.

I know I'll figure it out as I go, but as a planner, it's a bit unnerving to have to erase a planned future and begin re-imagining it from the ground up. It wasn't that I didn't have my own goals when Ken was alive, but he played an integral part in all of them--particularly in being the foundation on which I could achieve them.

Today is Independence Day. What an ironic holiday. In many ways it's just the third one I've had to endure...along with my birthday and the second anniversary of our getting married in Iowa. This one might just be the most difficult. It was this weekend last year, that Ken had healed in nothing less than a miraculous fashion from his hemipelvectomy surgery in January and had come through a "preventative" and devastating round of chemo a few months later with flying colors, a positive attidude, and some dear friends at the Creticos Cancer Center--our home away from home during treatments. Tonight as I hear the neighborhood fireworks crackling, and flaring in the sky, I'm reminded of a night like where he and I grilled outside and enjoyed many martinis while talking, planning, laughing and loving each other. We'd been through a war, and by all accounts at the time, we'd won. Now THAT was an Independece Day if ever there was one (okay, aside from the original one).

I remember he wheeled around the neighbor like Speedy Gonzales as we moved to get better vantage points of the night's temporary stars that abounded. The feelings and memories of that night are emblazoned in my mind. It was truly one of the best days we'd had post-surgery. He was in charge of the grill, and I was in charge the martini shaker. Like then, lightening bugs sublimely lit up all around us. And we marveled at them--as he always had. I mean, c'mon, a bug whose but lights up? High couldn't have been easy for any of them.

After dinner, we went for another wheel around the neighborhood. Ken was feeling strong and powerful--and he certainly looked the part--so he propelled himself forward like a hummingbird darting from flower to flower along the craggy sidewalks. I highly discouraged "drunk" driving, but he insisted he would be fine. The state of the art wheelchair came with more fails safe's than Fort Knox. So off we went on a gorgeous July night around the neighborhood. And it was on this trip, we had quite an adventure. Part scary and part hilarious.

Click this link to veiw.

In typical Ken fashion, he dusted himself off, get back in the chair and we continued on for another 40 minutes. He gently reminded me to please make sure the anti-tippers I removed were put back on his chair. He was remarkable in that respect--and in so many others. "Why not?" he said, to which I had no argument. The next day in spite of the tire burns on his arms, he wanted to go to Halsted Street and go to a couple of bars. And we did so. I video taped a lot of that journey, and I watch them with such great pride--for both of us. The video is a testament to how Ken's mind worked. His tolerance for pain was higher than most, and all he wanted to do was take a walk around the neighborhood with his husband to checkout fireworks you can only see in Chicago. Doing any of that with me was possible for him--but meaningless.

He's still teaching my lessons, and I'll be a start student. He left me with much more than he took. And that's just something I need to keep reminding myself about. You can feel free to remind me as well.

Before I sign off, I wanted to recommend a new blog for your reading pleasure, started by a good friend of mine. Check it out and make some comments. I have no doubt she'll give us a lot to think about: http://mycornermidwest.blogspot.com/

Make tomorrow an amazing day.

Soirée of a Lifetime

Yesterday was the Memorial soirée for Ken--my partner, husband and friend of 10 years. The day and the event can only be described as "perfect." It went off exactly as it was supposed to and was exactly what I expected, hoped for and needed in order to feel a sense of closure and to gain some perspective to figure out what my life's road map will start to look like.

I was honored to have so many close friends and family attend, and even more honored to have so many dear ones step up to share words about what Ken meant to each of them--from family to friends and even our doctor who not only came to the soirée, but told a beautiful and funny story about Ken, proclaiming him without a doubt his favorite patient. (Hey, wait! I'm still his patient. Oh well, he is definitely hard act to follow.)

The day started off on a good note. I managed to get myself to the gym for my training appointment--after pushing it back a couple of hours. I was constantly surprised about how good I felt the day would go, and little I was stressing over the details that I'd painstakingly planned for weeks. It was a day for Ken, and a day for those of us who loved him to gather, share and love each other (whether in person or in spirit.) I had a house full of Andersons, and one of my favorite memories of the day was the five us standing around the peninsula in the kitchen having breakfast, talking and goofing. It was a gentle moment that was the harbinger of a gentle, loving day.

The folks at the Annoyance Theater was so accommodating, friendly, and helpful. Once we were at the venue I felt even more secure that the day would be perfect. And it was. In every way. It's a testament to good friends and family when little details are picked up by others. I didn't have to sweat any of it. I could feel it. My "what if?" was put into stasis while "why not?" was freed up to get some leg room.

The photo below is a view of the theater space where the soirée took place. My dad is center, observing the setup, and Rebecca, a wonderful friend and the mistress of ceremonies, is to the right, prepping for the shindig. Once it began, this show played to a packed audience.



After I'd put out the call for people to speak, I outlined a theme that is most closely identified with Ken. "Why not?" And each of them--a dozen perhaps--all stood up in front of this loving crowd and shared stories that were all different variations on that theme. Each speaker was more compelling and passionate and funny than the last. It truly was a celebration of someone who touched all of us in a deep and profound way. Each was moving and heartfelt and heartbreaking all at the same time. It was a tribute worthy of Ken, and he would have been proud of everyone who braved "stage fright" to stand up and share their words. In one of the final deliveries of the event, his almost-90-year-old grandmother stood up. "I've got something to say!" she proclaimed when Rebecca was making the last call for sharing. She stood up in the second row, holding Mama Jo's (my mother-in-law) hand and said a string of the most beautiful and touching words anyone could ever hope to hear. Her courage wasn't surprising. She's rife with it. But to stand up and share thoughts about Ken and his and my relationship was mind-blowing and tear-inducing. She called us "the perfect couple." Her words, along with so many others will stand out in my memory as part of one of the happiest days of my life. And definitely a hallmark to Ken and the love we shared.

This day was a platform for me. It was a solid foundation on which to securely plant my heart--and my feet--in order to figure out my life and my future--without Ken as a daily physical presence. Securely entrenched in my heart, he'll never be far away from my life or thoughts. But this soirée was freeing. To his memory. To me. And to all of us who loved him. He won't be forgotten. That's an obvious impossibility. He's left indelible impressions on all of us--even people he never met in person. As I talked to people afterward, that notion became clearer and clearer. It's a shared loss, but more than that, knowing him was a shared experience that I know we will all take with us as we move forward.

There is something special that happens when you gather loving, creative, giving people with a common purpose. There is no discernible formula, but the result is nothing short of magic. My endless love and gratitude to everyone who has loved and supported us during the last year and a half--and always. The soirée yesterday wasn't just a tribute to Ken, but to those of us he loved and who loved him as we came together and celebrated him...and just celebrated. He would have loved seeing that.

At the conclusion of the soirée, I put together a slide show with some musical assistance from my Katie and my Craig (sister-in-law and brother-in-law seem too sterile for the relationship we share), and my dear friend Mindy. Click the link below to watch it. I know I will.

Soirée Slideshow

"Why Not?" Moments Abound (and so do "Other" Kinds)

I have been keeping myself very busy lately. Lots of organizing and straightening up "common" areas. Places I never looked at twice because either I knew Ken would tend lovingly to them, or after he was sick I didn't have the time or wherewithal to focus on. It's being in these places that were last arranged by his expert hands that I've had some odd experiences. I've had moments of crystalline clarity when somehow everything that's happened "makes sense"; where I feel so empowered by the gifts he gave me and can turn my face toward the future and know I'll figure out something I (and he) can be proud of. And then there are times when I'm entranced and befuddled. Completely dazed, hearing myself mutter things like "I had everything. Now I have nothing" or "my future evaporated." They are disconnected moments that feel like more of an echo of my grief at its worst. And finally, I've had some quiet, sit-down moments where I've sometimes enjoyed, and sometimes just endured the quiet that fills my house now.

This week I've found myself requiring a much higher level of organization and tidiness that I have ever experienced before. I make my bed now. And worse, it satisfies me. I don't wait to tidy up after things have piled up. I do them when it's the right time to do them. My eyes examine familiar things in a new and more scrutinizing way. Let's face it. It's a more Ken-like way in many respects. When I was organizing the bedroom I pulled the dresser away from the window in order to get to the curtains. I couldn't remember if we'd purchased them in Chicago or LA, but in either case I knew for certain they hadn't seen the inside of a washing machine for quite some time. So I slipped them off the rod and I bundled them into my arms. I heard a familiar voice whisper "hey, why don't you check to see if we have any Rit in the laundry room." What a ridiculous suggestion! I don't do things like that. Too complicated. Too hard. What's the point? I considered it then discarded it, then reconsidered, then rediscarded, but didn't think I was up for the challenge (though I'd done it before for the living room curtains per Ken's request.) When I tossed them into the washer, lo and behold, there was some "yellow golden" dye sitting loudly on the shelf--front and center. Whether it was Ken or the emotional impression he left on me--like we were pressed so tightly together he left a true and indelible imprint on my heart or my brain or my psyche or on everything. I love moments like that. I hope they never stop. I need them. It makes me feel connected to him--and to our accomplished life together.



Aside from trying to get back into the swing of things at work, I've been planning Ken's memorial "soiree" (what he wanted it to be called) which is equal parts fulfilling and painful. Am I looking forward to it? Not at this point. Am I dreading it? Definitely. Though I'm excited to see the readings our friends and family will be presenting to pay homage to him, I'm dreading the idea of a final "good bye" to him, and to a life I cherished. As those very friends and family begin to descend on Chicago beginning tomorrow (Friday), I'm optimistic that I'll feel more comfortable with--well, with everything. There are several people I haven't hugged yet, or shared a person-to-person cry with. I don't think closure can begin for me until that happens. And certainly, the "soiree" is only the very beginning of the healing process. I know Ken would love the idea of so many loved ones together; loving and supporting one another. In that respect, I'm really looking forward to it.

The Day

Today is my birthday. I knew it would be difficult--for multiple reasons. Acknowledging--let alone celebrating--my birth when I so recently lost Ken didn't hold much interest for me. Aside from that, and even more importantly, Ken always made my birthday special--just by being himself. Whether he pulled out all the stops for my 40th birthday in 2008 with tons of gasp-inducing surprises or whether we just sat in the back yard, sipping martinis and talked and (inevitably) laughed. In either case, he always gave me a card he'd made. Those were the most important and meaningful parts of my day without exception. He loved celebrating my arrival on the planet because he delighted in knowing our paths crossed, intertwined.

The card he created and gave to me on my 40th (after an astounding day of surprises) typified what he gave me every single day.




Today the sorrow and emptiness were inescapable. Like a Looney Tunes Acme Pothole (TM) that was thrown in front of me, no matter how far I tried to back up, it just got bigger and bigger. It enveloped me. There was nothing I could do but surrender to it. And I wanted to. My heart is broken in the only way it can be when part of it is removed despite vehement--and futile--objection.

I heard his voice today. After I finished working, he urged me to stuff a couple olives with bleu cheese and shake a martini. I didn't really want to--hard to believe, I know. But I did. And I toasted to him, and all the birthdays he made so special for me. I looked at photo albums, and even watched the video taken from my aforementioned dazzling 40th birthday spectacular, rife with surprises, love and laughter. And I felt it all again. I listened to his voice purr on the video, and it made me...happy. He relished giving and surprising. And I took great delight in reliving it, focusing not on my reaction to the deluge of surprises, but in his, in being responsible for them.

There are times when I want to lock all the doors, close all the blinds and turn off every electronic device I have just to curl up in a corner and live in my memories. And I can't guarantee that won't happen--at least for an hour or two. It's hard to continue past the mesmerizing sheen of a such a beautiful shared life. You can't help but stare at it. Think about it. Be entranced by it. And miss it...desperately. When your identity becomes so intimately intertwined with another's, extricating yourself from it seems heartless and wrong.

I don't have any "a-ha" moments to share. Today was hard in spite of the love that was communicated to me via phone, text, snail mail, email, and Facebook. In retrospect, I'm sure it will have made a bigger difference than I'm able to discern today. As for me, I enter my 43rd year incomplete and more fragile than I've ever been in my life. There is a level of general discomfort and disorientation I'm completely unfamiliar with. Sometimes I'm controlled by it in a way that scares, angers, confuses, and exhausts me in equal measure.

Building and Stumbling

I returned to work yesterday. It was a daunting feat, but a necessary one. I'd submerged myself in alone-time last week to ensure I could feel the full gamut of emotions I needed to feel. I gave them their due. I kept busy but allowed myself moments/hours to feel what I felt. But by Sunday I was ready to go back to work—or at least be “out and among.” To be busy and distracted and productive sounded like a wonderful idea. And it was. A couple of well-wishers stopped by my desk, and that was lovely, but for the most part I don’t think many people noticed I was back in the office. Many of them probably hadn’t noticed how long I’d been gone or why. The day went well, in fact I felt good to be back in the Aeron saddle again. The morning passed quickly. I ran across the street to Corner Bakery and indulged in a chopped salad. Delicious! The second I finished it, I had the impulse to call Ken and see what he had for lunch. Weird. I dipped my toes into a the sadness pool, but kept jumping in. “It’s okay. It’s okay. It’s okay.”

I left about 4:30. I felt triumphant and even texted my sister-in-law with said confidence. "Day 1 down!" As I rode the elevator up in the parking garage I could feel my emotions rising as well. As soon as I got into the car the tears streamed down my face and my chin quivered uncontrollably. The dam burst, and there was no holding it back—even if I’d wanted to. I used to love coming home. And seeing my sweet man. I knew we'd hang out and commiserate or celebrate, depending on the kind of days we’d had, over cocktails. It's sad and disappointing not to have that anymore. It’s another familiar experience that seems so empty and pointless and dull without him. Our time together was usually full of fun and laughter, but it was sacred at the same time. We replenished each other as well as ourselves.

I think a deeper challenge that I hadn't yet considered is finding meaning in my life. Before…just being part of “us” carried so much meaning for me. It was the multi-faceted foundation that acted as a spring board for everything else. I still had a strong sense of self but my life was bigger than me. The sum of us was greater than either if us individually. Therein lies the new challenge: creating a foundation to keep me stable and support me as I figure out what my life will look like and how it can serve me best. And serve the lessons I learned alongside the most amazing man I have ever known. I know he'd want our love and our life together to be a building block for me, not a stumbling block.

The bar in finding meaning in what I do in my life has been raised to just out of reach, it seems. When Ken was here it didn't really matter what I did all day because I came home to him in the evenings, and that was the time we worked on planning and pursuing our dreams. Now that time is over, and it feels like since it can’t ever be re-created, that it has to be taken to the next level in order to do it justice. What is that? I’m not exactly sure, but I’ll know it when I see it.

Giving myself permission to be excited about the possibilities that lie ahead won’t an easy task. It would feel like I’m abandoning my old life, and Ken. But it’s not time for that yet. I have a lot more feeling--and intellectualizing--to do before I get there.

Out on a Limb

As a two-time amputee Ken was intimately familiar with the loss of a limb. He often told a story from college when he stood up while not wearing his prosthetic to grab a book off the shelf and forgetting he wasn't wearing his leg, took a step to walk across the room rather than sit back down. As he thrust his weight forward to walk and realized there was nothing there to support him, he laughed while he fell, experiencing confusion and dismay that he found himself in this predicament. He described his fall as long and in slow motion before landing unharmed on the dorm room floor. He was always proud to tell that story. It embodied him. He viewed that fall as a journey in itself and took the time to think and examine his feelings while he experienced it.

I feel like I've lost a limb. And, like him, though I know it's no longer physically there, there have been thousands of nano-seconds where I've expected to be able to rely on it; expecting to see him when I walk into the living room; expecting to hear his voice looming closer down the hallway as I prepare dinner; needing to check with him before making plans with a friend. All little reminders and habits that develop when you're used to counting on something that has always been there for you. And each time--like in his story--there is a fall. Sometimes quick and relatively painless, and sometimes slow and arduous. Sometimes it can feel like I'm an amnesiac who keeps forgetting something extraordinarily painful, and having to relive it when it's retold to me.

I cooked dinner for the first time tonight, rather than relying on frozen pizza or delivery. It seemed to be a fun, positive decision when i made it this afternoon. It was a great source of pride for both of us that I took over the cooking and moreover, fully embraced it. A few weeks ago, he was sitting in his wheelchair in the kitchen, watching me as pulled a full-on-cooking-show mode, laboriously detailing every nuance of what I was creating, and describing the anticipated and delicious outcome. He was delighting in my "haminess", yet when I turned away for a second to check the pasta, and turned back, he was gone. When I found him in the living room, he was sobbing. "I won't be around to watch you cook these amazing meals. And I won't be here to read all the wonderful things you write," he blurted, his chin quivering. I knelt beside him and held him as I wept with him. I wanted those things not to be true as much as he didn't. BuI'd learned from experience that moments of that can't be made "alright". All I could do was tell him it was because of his involving instruction I'd become fearless in the kitchen, and it was because of his support and encouragement that I kept writing. Likewise, it's because of him I write this blog. To share our story and as a means of healing and release for me. And it's because of him, I'll always love to cook and bake and feed people platefuls of love.

It's a strange thing to be alone in a place I shared with him; and a place we both loved. It's strange to wake up to a quiet house; not a creature stirring until I'm adding cream to my coffee. Silence by default hasn't been the case in my household for over ten years. By the same token, being alone is the only way for me to process this part of the journey.

And I know I'm not alone. I've been surrounded by love and support my entire life--and in particular the last year and a half when Ken was re-diagnosed with cancer. I'm without a limb I grew to rely on. But following Ken's impeccable lead, I know I'll be able to learn to do all the things that are important to me without it. Like him, I'll love remembering that limb and recalling what it gave me with great affection and gratitude (stump dog, anyone?)

But for now I'll just miss it--the part of me that isn't with me in the same physical way anymore, and do my best to honor him. And love him; and everything he so effortlessly seemed to give me. Sometimes I have to grip on to those lessons tightly during moments of overwhelming sadness, fits of unfocused rage, and unanswered cries for a "do over." (Note to self: make appointment with therapist.)

In spite of this inevitable emotional roller coaster I've been strapped into with great objection, the thought that serves me the most is "to get through this darkness is to honor him and our life together."

So, that's the plan, Stan.