A Book in a Day

"The Rules of Inheritance" was released on February 2. I woke up that morning to an email from Amazon.com, letting me know the book had been delivered to my Kindle. Up and out of bed with the excitement of a toddler on Christmas morning, I grabbed my iPad and curled up in a chair in the living room and devoured the first section while sipping the day's first cup of coffee. But it didn't stop there. It couldn't. I was riveted; compelled to keep reading. I couldn't put it down. My friend--the author--Claire Bidwell Smith's first book was a first book for me too: it was the first book read from cover to cover in one sitting. It consumed me.

I knew some of the stories from meeting Claire, when she was our hospice grief counselor who made weekly visits to north side apartment as part of the hospice services afforded to my partner Ken, who was diagnosed with terminal cancer. On her visits, during many of our talks we asked her about where the book was in terms of getting published. It was exciting and terribly impressive--particularly to aspiring writers like Ken and I. He was as thrilled for her as I was. In fact, the whole family really got into the act.

The book itself is a sensual read about her experience of having both parents diagnosed with cancer within months each other when she was fourteen. Her mother died when she 18 and her father when she was 25. A lot of loss for an only child to deal with. Her easy writing style in the book is unconventional--more like reading a personal diary in some ways than anything else. And most importantly, I felt like she was talking to me. I could hear her gentle serene voice reading the words aloud in my head.

So much has happened since those visits last spring. She and her family relocated to LA just a week or so before Ken died. And through the darkness that ensued, Claire and I remained in touch, even having the opportunity to meet for drinks later in the summer--to check in with each other. Emails and texts followed. And as a faithful reader of her blog, I was kept in constant touch with what was going on in her exciting pre-publication life.

Within the framework of Elisabeth Kubler-Ross's five stages of grief (Denial, Anger, Bargaining, Depression, Acceptance), Bidwell Smith weaves a lattice of vignettes from her life, not chronologically but by these stages that serve to envelope you and take on this journey with her. With no shroud or subterfuge, Claire tells her story poetically in some parts, and with stark honesty in others. It was a true emotional roller coaster. There were parts where I openly wept for her and what she was going through, other times I wept selfishly without abandon for myself, what I've lost because she was saying rings that I'd said or felt during my husband's illness. And other times, I didn't know who I was weeping for.

I don't know if I ever would have heard of Claire's book had I never known her or experienced loss and subsequent grief as I did, but that's how life works, I suppose. When someone special like Claire comes into your life, you know your better for it. I know I am. Her book helped me to release some feelings I wasn't sure I still had, and I'm so grateful for that.

If you have ever experienced loss and grief, I strongly encourage you to pick up a copy of this book. Yes, I'm a little jaded because we're friends, but that didn't mitigate what a well-written memoir it is.

I encourage Chicagoans to go to her book signing event at Women and Children First Books on March 1. You can see her other events on her website, or check out my review (and several others) on amazon.com.

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.

An Anniversary Thank You

This week marks the one-year anniversary of the my first blog. During the intervening year--as I promised myself--I've written at least one blog per week. It's an accomplishment that fills my writer's heart with more than a little pride. When I began blogging in December, 2010 I told myself it was mainly to gain some exposure on the blogosphere and to begin building a public voice as a writer. But early on I knew I was fooling myself. Ken's illness and subsequent death has been a difficult journey. Were it not for my need to journal, to document, to express and share our journey together--and now mine alone--I would have been left far more damaged.

I admit without pride or glee I knew from the beginning of the bleak diagnoses there was something within me--maybe strength; maybe selfishness; maybe some measure of both--that wouldn't allow losing Ken to leave me used up and ground down. Of course Ken's eternal optimism and courage played a key role to that end. And my need alone to write this blog and to document my feelings on this journey was only part of the formula that kept me buoyant in such heavy water over the past couple of years. There have been so many people in our life together who showed unwavering kindness, grace and selfless beauty, and who played weighty roles in helping us deal with Ken's illness, and helping me cope with his death.

I couldn't think of a more appropriate anniversary gift than showing my gratitude. This is for you...

You celebrated with me during times of ground-swelling triumph, and you mourned with me during times of earth-swallowing sorrow. And you "let me be" during times of both--and all in between--because you know that's how I sometimes need to both celebrate and cope. My "apartness" is no stranger to you, yet you understand it--or at least accept it.

You wept with me during times of overwhelming despair during the last year, and you also found a way--when I was ready--to make me laugh until I cried with lung-wheezing abandon, sometimes at your own expense. You left me voicemails and understood I wasn't in the mood to talk. But you kept calling. Kept checking on me. Continued to send me love without reserve. You thought of me, and sent me strength. In spite of the hopelessness of the situation, you never stopped digging deep and finding hope and love to give to me.

You knew you couldn't experience what I was experiencing--though you begged to the heavens for the contrary to be true. You wished you could soar across space and time to get to me; to change events; to take away the pain. You selflessly turned down the volume of your own feelings in order to better hear mine. You comforted me with food; with words; with love and tenderness--sometimes without ever knowing me very well--or at all. But it never mitigated the love and compassion you drenched me with.

You picked up the slack at work--in addition to an already full workload--to assist during my FMLA absences, and to allowed me to focus on caring for my beloved, and sent me encouraging words and gifts, and instant messages of kindness and strength.

You helped me deal with a loss the likes of which I could never prepare for. You wept with me. You helped me. You loved me. You reminded me that death doesn't mean "the end" of everything. You supported me in blissful moments when I understood that, and in hopelessly lost ones when I didn't.

You texted, you Facebooked, you emailed. You sent cards, notes and care packages. You never failed to let me know that I had your support; that I wasn't alone; that I could reach out to you at any time of the day or night; that you would be there for me. And you were.

Though you tried with all that is you to understand the emptiness I feel and the hole left in my heart, you know that each grief is unique and unmatched. You never had to pretend to understand the complexity of my mourning. Because yours is just as complex.

You loved me in way that was both unique and universal in all the ways that is possible. You ignored your busy life in order to make multiple trips to spend time with Ken and to support me. You shook the martinis and manned the kitchen. You understood and valued the true meaning of fellowship and living in the moment.

Whether I have been able to tell you or not, you helped me on the journey I'm on to better understand what I've lost, but--more importantly--what I haven't, and there are good things yet to come. It isn't lost on me that Ken lovingly taught my destination-oriented psyche to embrace the journey. Like all journeys, this one comes with the bitter as well as the sweet. But it's being on the journey that counts. As I move forward into 2012, I know some important and exciting things await me. You are part of that goodness.

No one could have been so lucky as Ken and I were to have been surrounded by such loving and caring people. "Thank you" doesn't seem meaningful enough to let you know how grateful I am to you, but it's the only way I know how to do this; to thank such an elite and loving group for helping in ways that were kind, loving, and everlasting.

Thank you for your courage, love and support. I'll never forget it.

Tonight PadLo and I will have a toast to Ken's unyielding spirit, to the unmatched support and love of our friends and family, and to the first anniversary of TXD.

Cheers, my friends. To honoring the past and to all the good things yet to come.

Oh, PadLo!

The Stuff of Dreams

(PadLo is ready to hit it!)

I've only had a handful of dreams about Ken since he died--and against all my hopes, they didn't start until the last couple of months. I suspect my subconscious knew I wasn't ready. My remembrances of the few dreams have been non-specific. Sometimes when I crawl into my flannel sheets at night I whisper to the empty spot on his side of the bed "I hope I dream of you tonight."

This was the case the other night. Right before bed I'd been thinking about our (it feels weird to write "my") annual Christmas card. Up until last year, we created the cards ourselves from concept to post office. We'd sip martinis in our back yard on balmy nights in June or July and begin brainstorming ideas. Though I toyed with the idea of creating a card for this Christmas, I knew it was wiser to purchase them, taking some unnecessary pressure off what I knew would already be a challenging holiday season. I went through photos of Christmases past. Of course it was tinged with a little sadness, but it also bathed me in some wonderful memories.

After I'd gone to bed and expressed my hope, I turned over--my back against his side of his bed. As I was drifting off I felt a gentle tap on my side. Nothing alarming. I didn't even flinch. I don't know what it really was. Did I do it? Or did he? Whatever the case, it was comforting and I continued on my journey to sleep. Though that had never happened before, I had experienced smelling his scent once as well as Q's one day in the car. Some things aren't worth questioning.

The next morning when my alarm went off I snoozed it as usual a couple of times. It was drifing in and out of dream state when I heard Ken's melodious voice calling to me from the living room. Again, it wasn't alarming, but it was surprising. I knew it was impossible, but I wasn't going to look a gift horse in the mouth. When I walked out into our dream living room I dragged the quilt from the bed behind me. Ken was lying on the couch. I asked him if he'd been cold sleeping on the couch. His face was angelic and sweet. He didn't open his eyes as he shook his head--that he hadn't been cold--he grinned knowingly and opened his arms for me cozy up next to him. I nestled in next to him, pulling the quilt over us.

Then the alarm went off again--yanking me away from him. I woke up heartbroken. It HAD to be one of those dreams that I remembered in technicolor detail. The joy of dreaming of him and seeing him was eclipsed by the illusion of it all--that was waking up without him and without my head buried in the between his shoulder and cheek. I was "off" for several days following and just today felt I should share the story with miring myself down in sadness. I put my work aside for a while and thought about what had happened and acknowledged the complex cocktail of emotions.

I'm grateful for such a vivid dream, but on the eve of the holiday season--when emotional volumes are turned up normally--it serves as a cautionary tale that grief won't take a holiday. I'll continue to navigate the gauntlet while working and pursuing my goals and entertaining welcome distractions and dealing with my emotions while trying to regain equilibrium. It's like learning to juggle while maintaining balance on a seesaw.

As difficult as the holidays will prove to be I'm still looking forward to them as much as it's a part of who I m and who Ken and I were together. Learning to celebrate what knowing him and loving him has given me rather then celebrating with him in the flesh isn't an impossible task, but one that will take some time and some skill to achieve. On the brighter side, I spent last weekend with my family celebrating my parents' 50th wedding anniversary and head off soon to spend the Thanksgiving holiday with Ken's family (just as much "my" family, and differentiated only for the reader's understanding), as well as get in some quality time with a couple of close friends.

With my best "ken-do" attitude, I'll take it one day at a time, and try to focus on spending time with those I love--and be grateful for it.

You'll be the first to know if it goes in a "different" direction.

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 Season of Change

Autumn is afoot. There is no doubt. The rich golds, oranges and reds are beginning to top most of the trees--in spite of the 80-degree weather we've been having the past week. It's always been my favorite season dating back to childhood when my internal clock told me the new TV shows should returning like swallows to Capistrano and I could catch up with the happenings of my small screen friends. But fall in Chicago is always something special. Like the city is putting on one final show of it's regal colors before closing up shop for the inevitably long winter. Like most Chicagoans, I'll cross that bridge when I come to it. For now, I'll enjoy the weather and the colorful flora on my walks through the neighborhood.

Autumn is the one season that means "change" and signifies the end of something in a more meaningful way than the others. I know some of the members of my bereavement support group have expressed an extreme distaste for this time of year, though I'm sure part of that includes the impending holidays and the difficult firsts that await us. I can understand their feelings, but I still love this time of year--holidays notwithstanding.

Rather than "spring cleaning", it's this time of year when I feel the need to declutter and organize. I was doing some organizing and rearranging recently. I've been pretty careful not get rid of anything of Ken's--aside from a few donations of items with no sentimental attachment and gifts to particular people he knew. I'm in no rush to go through all his things and make difficult decisions, though some days it doesn't seem as overwhelming as others. When I decided it was time to get ride of a futon frame and mattress in the "guest nook" I was hit full force by something I wasn't expecting. The frame pre-dated Ken. I bought it in 1998 when I lived in an awesome studio apartment in Lakeview on Cornelia and LSD. Ken and I bought the sweet mattress (with springs!) after we moved LA and were living in my brother- and sister-in-law's guest house. It was a bed we shared for almost a year (until we moved to a bigger place and it became our couch). Our precious Chow-Chow Q napped on it with each of us, and countless loved ones and guests have nestled into it after long, lovely evenings of chatting and cocktails--both in LA and in Chicago.

Just the thought of getting rid of it stopped me in my tracks and emotionally punched me in the gut. I got so upset about it I started crying as I stood there staring at it. It was truly a pathetic scene--only in the sense that I'd brought it on unnecessarily all by myself. Once I got a grip and calmed myself down, I placed a moratorium on getting rid of anything that upsets me and makes me cry! Later that day I spent some time really thinking about it and trying to figure out what exactly about that futon caused me to flip my lid. And I figured it out after some deep soul searching (and a martini or two): my "old" life--the life I lived, loved and shared with Ken--is slipping away a little bit each day.

Yes, I have memories and keepsakes that will never leave my possession, but the basic premise of my life has shifted and like footprints on a beach, the tides of time will wash over them repeatedly until they're gone. It makes me profoundly sad. Grief and loss comprise so many things. Coming to terms with the fact that a future I'd expected and eagerly anticipated has evaporated is among one the most difficult aspects to deal with. It's like running toward a lush mirage that disappears once you're close enough to taste the live-giving water. It's a jungle of emotions that take a while to navigate through--sometimes hacking away with a machete, and sometimes painstakingly unknotting the chaotic feelings by hand, or sometimes knowing a change of direction is the best approach to keep going.

On the flip side, I do experience moments--and days--when I'm excited about the future as I pursue my writing aspirations and relish in the relationships I have with family and friends--and with myself. Though I don't know what my "new normal" looks like, I can say with some certainty that I'm not there yet. Time alone, spent clicking away on the keyboard or experimenting with a new recipe in my kitchen are the times when I feel most centered and comfortable.

Intellectualizing still has its benefits. I know what I have to do, why I have to do it, and that Ken would want nothing more than for me to move forward in pursuit of my passions and dreams--which now include some of his, as well. To me "moving on" sounds heartless, but "moving forward" is something we all have to do no matter what our situations are; it's what we all have to do--"just keep swimming," as Dory so aptly sang in "Finding Nemo." Just keep going. There is no alternative.

I hope in time I'll have a better understanding of how my life with Ken will fit into my "new" life--whatever that will look like. Uncertainty abounds in such a way that I'm learning to find it less and less frightening. What I do know for sure is as irrevocably as losing Ken has changed my life, loving him shaped it--even more.

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.

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.

Visiting Old Friends--the Good, the Sad and the Memories

Last week I decided to bake some cupcakes and take them to the staff at Creticos Cancer Center, where Ken received his treatments and we were constantly as dazzled by the tenderness and humor we found there as they were by Ken's positive attitude and undeterred sprit. I hadn't seen any of them since I was there with Ken and his folks for a social visit in April. I'd been there to see my therapist once since he died, but wasn't up for a round robin of visiting everyone. I'd planned on going before, but this time I was somehow more "ready".

The cupcakes I made from scratch were ones I'd taken there before. I remember the first time was a celebration for Ken's "initial" (and at the time "only") chemotherapy treatment. It had been hard on him, and I definitely wanted to celebrate the achievement with those who knew that best and who lovingly treated his body and his spirit. I brought them again once or twice more for fun. Ken and the staff alike loved them. And I always love making them. They're homemade Hostess cupcakes, and they're amazing--and always will be to me. Click the picture below for the recipe.



I saw most everyone I'd hoped to see, though a few people weren't there, and on our last social visit in April we'd learned his wonderful oncologist had accepted a position in the suburbs. As wonderful as it was to see all the faces I saw, I think anyone who knew Ken or had been with him on a visit knew his one great love at Creticos was Blanca, an angelic soul who works in the Infusion room, administering chemotherapy. She wasn't there when I first arrived, but after I made some more rounds she'd returned and I got to see her. It was truly wonderful. She always has a smile on her face, love in her voice and a positive attitude. I think in many ways she and Ken were kindred spirits. I was always happy to take a back seat to her and Ken's dynamic duo when we were there.

I was surprised how I wasn't nervous to see everyone, and that I didn't get emotional while there--although that did take some effort on a few occasions. It was great seeing everyone, but it was odd being there alone--not even being able to go home to tell Ken of my visit. Even odder. But it felt good, and like a step in the right direction. After spending some time visiting and delivering my home baked goodies, I headed home. As I walked to my car I felt a great sense of relief--and accomplishment.

But shortly afterward I began feeling a little "off". It was like my axis got bent, throwing off my very rotation. It was basic, but hard to pinpoint. It was some kind of emotional backlash. I should have expected it, but I didn't. It felt like my grief was rabbit hole and I was tumbling ass over feet. It pushed my missing him into hyperdrive and sent it into orbit. I pulled out some of his writings and looked at photos. "Stop torturing yourself, Ronald," I muttered out loud more than once. But even as I caught myself with a tentative grip from continuing my fall, I'd pry my own fingers off. My emotional compass was whacked. I felt lost.

In going through some things I found a percolator our friend Kathy had given to him for us to use when we went camping, I was slammed with the realization "I'll never go camping with him again." Something I suppose that should have been obvious. But it wasn't. In some ways, it was like losing him all over again. Losing him in general was one thing, but there were so many specifics I hadn't considered. I was missing him so much, the hurt and the anger were palpable. When I thought back to last summer--after everything he'd gone through, we were supposed to be able to go camping or traveling--with his new prosthetic.

I'm learning how precarious and layered grief can be.

I started reading some of his writings later that day. I guess I was looking for something he's written for me. Or just something that will connect me to him. He is here everywhere in our apartment--that he and Kathy picked out prior to our moving back here from LA.

The next day I was driving home from Target after spending a gift card on some fun kitchen implements but still thinking of Ken and missing. Then out of nowhere--with the windows of the up--the car was filled with the scent of wet Chow (our beloved dog Quantum was a Chow Chow and departed from us December 29, 2009--a few weeks before Ken's surgery). The car smelled EXACTLY like it did when we'd drive home with Q from spending the day at the beach where she would run and play in the foamy surf. It was odd and certainly unexpected, but felt intentional--directed, somehow. I can't explain it because it only lasted for a minute.

Our girl loved to play in the surf, always resulting car ride full of pungent "wet Chow". Below is a pic of Q from August of '04, romping on the beach in Malibu.



Though it took most of the Labor Day weekend to process and work out of my funk, the past week has been difficult. But I get that is okay as I worked toward my "new normal". After my wonderful experience at work last week with a co-worker who kindly and openly shared his experience in losing his partner, I realized I was ready for a new level of support. My therapist told me months ago to seek out a spousal bereavement group and I know I'm ready to do so. I'm planning on going to Gilda's Club on Saturday for a "New Member Meeting" which entails meeting with a counselor to personalize a plan to help me take advantage of the services they offer.

Another step in the right direction.

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.

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!

Lessons Learned in Zero Gravity

Getting back into the work groove has been good--for the most part. But it has offered its own set of challenges. Some days are still easier than others. The other day I had a "hiccup" that caused me to pause and look through my work emails for ones Ken sent me. Not smart. Tons of emails and several e-cards--which all still worked. All of them mentioned how much he loved me and how he couldn't wait to see me that night. We'd convene in the back yard with a glass of wine or martini and talk about our days and our goals and plans--and, really, just celebrate each other. So there I sat at work, reading those emails, feeling how present they were. And on a hot, muggy Chicago day--like the kind we used to sit down in after a hard day's work--there I was at work, knowing there was none of that to go home to. Another stabbing reminder.

It's what I've come to learn as a zero gravity moment: a moment of temporary disorientation where time seems to stand still and my stomach starts to make its why up into my throat. It's the harbinger of nothing good. For me the rest of the day was difficult because of that fateful decision to read those emails and the places they took me. I could feel my demeanor changing and I felt powerless to do anything about it--which made it even more frustrating. Thanks to a phone call later that night I was able to work through it and "shake it off."

The one good outcome of one bad day, is that all the rest that follow are great simply by comparison. There are choices I'm faced with everywhere I look; forks in the road, as it were. One path is the emotional "cutting" way, and is surely the fastest way to a bad day. It's a path I've taken out of habit and grief. Not taking that road in the past has felt like I was trying to ignore his memory. But as I've learned this past week that isn't the case, and it's okay--necessary, even--to take the other road. And that's how it needs to be for a while. It will be like learning a new, good habit. The path that should be taken doesn't focus on any negativity or sadness. It's a path of action--or at least distraction.

During the bad day at work, I had a huge burst of anger. It caught me off guard as well. I think it had something to do with dealing with "firsts" and this was the first time this particular situation was happening to me at work. I was able to sort of work through it; minimize it as I sat there stunned like a crash test dummie. Moments like that feel like gravity releases me and I begin to drift upward and then back--like riding a ferris wheel that's going super fast. It takes a lot of kicking and jockeying to get your feet back on the ground and to keep moving forward.

On the brighter side, the rest of the week and the weekend only involved taking the "correct' fork in the road. I'm pretty confident learning to navigate these roads is something that will get easier. But in the meantime, if anyone has a map for sale...

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.

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