the xanax diary

I haven’t been dreading this day as much as dreading it not being the kind of day I used to look forward to, but I guess that is no news to you. (You are the Universe, after all. All encompassing, omniscient, etc.) It’s another reminder; a confirmation in case I forget the circumstances of my reality. Thanks again, Universe. You’re the best. (Sarcasm heavily implied, but again, you know that.) Today is a special date that deserves jubilant celebrations, parades and fireworks. But I’m a little strapped at the moment so feel free to arrange that and I’ll pay ya back later. Please use your nights and weekends as much as possible when calling foreign heads of state to arrange this global holiday.

It’s a day that is only tinged (so far) with sadness. As much from missing him as remembering sitting on his hospital bed last year with a bouquet of flowers, grinning at him then quickly realizing he had no idea it was out 10th anniversary. The physical pain hadn’t been bridled yet, plus I’m sure he was in shock from all the unthinkable news we were getting machine-gunned at us. It was hard, but I think I was most sad because I knew how upset he would be if and when he remembered. He was the master of both the grand and the subtle gestures and never missed any milestone—no matter how minute it may have seemed. (PS - I don’t feel even a little bit bad about how I handled the unsolicited call from 1800 Flowers yesterday, asking me if I wanted to send Ken another arrangement this year for our anniversary. I’m sure he’ll recover—someday.)

Once Ken was home for hospice and his pain was managed, he remembered and he felt terrible. I know you’ll understand, Universe, that lying to him and telling him he did indeed remember was the right thing to do. I only wanted to ease his mind about it, but couldn’t rest his hands from making me one of his beautiful signature one-of-a-kind cards.

What I want to always remember about this date is my fluttering heart when I laid eyes on Ken on March 23, 2001 after a brief first meeting a couple of months earlier. I want to remember his million-dollar smile, his silky/growly voice and how he covered his mouth with his hand when he amused himself (and me) to the point of hyperventilating—usually with very inappropriate humor. I loved touching him; putting my hand on his shoulder or holding his hand. Our connection was obvious and abundant, and one of the prizes of my life of which I’m most proud. Pasting the photos of us into this entry transported me to each event, and I found myself not sad or tearing up, but grinning. Even his photos transmit a kind of positivity that is undeniable.

I’ve been taking daily walks thanks to Mother Nature’s apparent dementia. It’s a great time to let my mind wander. My thoughts easily drift to my life with Ken, and since. And I think about grief, and what a unique and unpredictable animal she is. A shape-shifter of sorts, I liken her to a Chinese finger prison or quicksand: the more you struggle to escape it, the tighter her grip throttles. Relaxing into her and submitting to her total control are the only ways to appease her. I never impinged I’d spend so much time pondering it. One day while on a walk I texted a note to myself: “Gluttony of grief. We always want more of what we had rather than being grateful for what we had.” I wanted to expand on it later in this blog or in my journal. I immediately got an email from my sister Ronda, asking if I was okay. Rather than texting it to myself, I’d sent it to her. Oops. I imagine she pictured me on a ledge somewhere or in a-pre-final-heroin-injection state. Sorry, sis! (FYI…blame can be squarely placed on two parents who chose names eerily similar.)

It’s important days like today when I can’t help but take stock in what I have and scrutinize things I want to change and target things I want to accomplish—both things for me and for Ken. As I emerge from my SID-induced isolation, everything seems possible. I feel enduring hope and optimism as I’ve felt sunshine upon my face these unusually beautiful March days. Ken lived his life not by fear, but by being bold. And I always envied that trait—particularly as our lives become exponentially complex and challenging. And hope I can emulate it someday—effortlessly, without thought. Though I suspect extracting the “what if” from me might prove nearly impossible.

Another milestone in completing the 365-day circuit of “firsts,” I want to celebrate today. Somehow and in a way that was different for me. I’ve taken the day off and started it by heading out early to coffee shop to write this blog. It’s my plan to stay out for most of the day—something I wouldn’t normally do, but something Ken would have easily done. Massage? Movie? Perhaps. Or rather, “why not?”

June, 2001

Christmas, 2002

February 2007

December, 2008

I can’t believe the mild winter and seemingly early spring we’ve experienced in Chicago this year. Up until this winter, we’ve had increasing amounts of snow, culminating in last winter’s February 1 blizzard. I was talking to a friend at work recently about this amazing weather. I brought up the power of “the promise of spring.” The anticipation and excitement of warmth and sun. Rebirth, really.

There’s a walk I like to take when the weather is decent. It’s not even mid-March yet and I’ve been able to enjoy it half a dozen times already. It hasn’t been particularly pretty—since all the flora is still confused as to what is going on, but it’s been so nice to get out and walk around the neighborhood. It’s an old friend of a route I’ve taken for several years, and it’s good to see its contours, textures and landmarks. but never often than last year.

I’d never taken this walk as many times as I did last year. It can be mindless, filled with music in my ears, or it can be a thoughtful one where I work out ideas for blogs or stories or work. But as spring approaches on recent walks I can’t help seeing things within the framework of the cycle of life and rebirth; promise and hope. These walks act like a sieve of sorts, shaking out the bad—sometimes the sad—and putting a spotlight for the gratitude I feel. For everything I have had and still have.

Telltale signs of spring:

1.) Little colorful buds are poking out of the ground.

2.) Bicycle tires are getting inflated to the proper PSI:

3.) And sidewalk chalk has been busted out.

Yours truly (right) with author and friend, Claire Bidwell Smith (left—and moderately preggars)

Most months, the first is a sometimes glaring, sometimes dreaded number appearing in the first square of the calendar. Some months it approaches more brazenly than others. The first of this month (March) has been on my radar for a while for a couple of reasons. March 23 would have been Ken’s and my 11th anniversary together, and also serves as a reminder that last year on that date he was in the hospital and was too out of it recognize our 10th. I think more than anything the beginning of March is more of a harbinger for me for feelings that will come later in the month. As for March 1 marking nine months since Ken died, like many other months past, I can hardly believe it.

But there was less of a sting this month. I’ve kept this first on my calendar for other reasons since I found out my friend and author Claire Bidwell Smith would be in Chicago doing a reading and signing of her first book, “The Rules of Inheritance.” It’s a stunning memoir dealing with the journey of coming to terms with grief and loss that I devoured the same day it was released last month. (See my blog about the book.) As the promotional tour was announced, I was excited to see Chicago was on her agenda. She was scheduled to do a reading at an independent book store in Andersonville—on Chicago’s north side and not far from me. And I couldn’t wait. I’d never been to an author’s reading before, so it was extra exciting.

There’s something very healing for me about seeing Claire. Something quiet and unspoken and gentle. Our friendship was forged for me—not only in the unyielding heat of grief and loss—but partially because of it. As our hospice grief counselor, we shared intimate moments that can only be experienced when you’re talking about love, life and approaching death. I felt at ease with her the first time I met her, and my husband Ken and I both fell for her very quickly. Knowing my journey isn’t an unfamiliar one to her; that she has experienced significant loss like me, but that she’s compelled to write about it and help others better understand it are some of the reasons I find myself so connected to her. The irony—or rather, serendipity—of meeting her as I was losing Ken isn’t lost on me. She is one of the gifts bestowed upon me from the experience of loving and losing him.

The book store was packed and became standing room only at a certain point. Her reading was spellbinding. I found it comforting to hear her smooth, steady voice speaking the words just as I’d imagined them when I was reading it. In spite of that, I couldn’t help bobbing in and out of the story as I looked around the room, seeing everyone riveted and motionless as she read; the obvious support and love emanating from her husband Greg (who I’d gotten the chance to meet just before the event started) as he watched; the sound of my own heartbeat racing at times during her reading when her evocative words transported me.

It was a beautiful evening that left me feeling joy, pride and love—which the picture at the top pretty clearly demonstrates.

Friends and regular readers know what an amazing attitude and spirit Ken had—always—and it continued after his cancer diagnoses. In fact, it got even stronger. In addition, he always possessed what he and I termed “a need to create”…crafts, cards, artwork.

On Monday I received a intimate reminder of his creativity—as well as a beautiful symbol that his talent seems to be part of a family legacy.

<img src=”http://thexanaxdiary.files.wordpress.com/2012/02/wpid-dscn0886-2012-02-27-21-04.jpg” alt=”wpid-dscn0886-2012-02-27-21-04.jpg” width=”2748” height=”4556”>
(Ken’s sense of humor shone through beautifully in his T-shirts. After his hemipelvectomy, he only had one leg which was a particular target for his disarming humor.)

The summer after his surgery and first round of chemotherapy treatment Ken wanted to make T-shirts with positive, fun and very him-like phrases on them to wear to doctors appointments and anywhere, really. I can’t honestly remember if this idea was after he’d already been re-diagnosed or not—which is sort of frustrating and had me feeling a like a shitty husband. I can’t help but consider were the situation reversed, Ken would have known when I wanted to create these amazing, monikered T-shirts.

Anyway, after Ken died Mama Jo (what I call his mom) took shirts back to California with her to create “a project.” She referenced the project occasionally during our phone calls. I’m sure there were times when it was difficult to work on. And others when I hope it was incredibly cathartic. When I called her soon after opening the box that contained it to thank her, she said she was as happy to have it finally finished as she was sad. I think know what she means.

I had an idea it was coming and on the way home from work when I remembered to swing by the UPS store to pick it up, I felt a pinch of emotion. I’m used to that by now. But when I got home and settled in to open it, I felt only curiosity. Then after opening it, wide-eyed wonderment. It felt so good to see those T-shirts again. They were a hallmark for Ken and that time of our lives. And for so long I folded them and put them in the top two drawers of his dresser. And for a shorter time after that, I’ll never forget asking and sometimes helping him decide which one he’d like to wear that day.

Unfurling the quilt was like welcoming home an old friend. It’s not a just a quilt though (probably a wall hanging), it’s a piece of artwork. It’s Ken’s voice, framed in Mama Jo’s love. Such a beautiful metaphor. And only one of the many reasons I love it so much.

In case you missed this news article carried by all the outlets:

A new disease has been identified by a researcher in Chicago.

“Social Impotence Disorder” (SID) is characterized by the inability to “get it up” for social interactions of any kind. It often occurs after the death of a loved one, and is accompanied by grief and general disinterest in in-person social activity. It should not be confused with intentional or willful apathy. It stems from the inability to connect to the part of oneself that normally drives the interest and need for social interaction. Short-term solutions are extensive blogging/journaling, and patience and understanding of those closest to the impacted individual.

I’ve experienced SID since losing Ken last year. Never an overly social person in the first place, I think it’s a normal part of the grieving process. A good way to describe it metaphorically is that the organ (a body part, not what they play in church) that is in charge of social interactions has been shot up with Novocain. You know have it, but you just can’t feel it or connect to it.

There have been instances when I’ve actively “treated” the illness with a couple doses of “why not?” and it seems to do the trick. But that remedy doesn’t work consistently. I’ve never minded being alone, but admittedly, I have a different perspective because “alone time” was the exception and the majority of my time was spent intentionally and by default with Ken. During our decade together, he very subtly and very quickly became my closest friend. He was easy to be with, and more than anything we preferred each other’s company to anyone else’s.

Recently I’ve done some thinking about my SID self-diagnosis to try to better understand it. It’s a mixed back of contributing factors and personality quirks, but I think one of the main factors is that during the last couple of years, my main focus was taking care of Ken, and my time wasn’t mine anymore. It was ruled by daily appointments and 24-hour medication schedules, and asking “What’s your pain number?” It was incumbent up on me as his spouse. I can’t say I did it “gladly” because I wasn’t glad he had cancer, or that I’d do it all again because I’d never want him to go through it again. It was my responsibility and I took his welfare very seriously.

After he died, my ceaseless, round-the-clock caregiving schedule evaporated—along with so many other things. Good or bad, like it or not, my time was my time once again. It became a big space to fill up; a void. It contained the double-edge sword of silence: that he was no longer in pain, but that he was no longer a physical presence in my daily life. Since then, I’ve kept no discernible personal schedule—except with myself. Impromptu off-the-couch-and-out-the-door treks surprise even me sometimes. Nothing predictable.

I think another less visible contributing factor is some kind of primal if-I-can’t-spend-time-with-him-than-I-don’t-want-to-spend-time-with-anyone sensibility. It’s where the many layers of loss become a little more evident. Not just losing a spouse, but a best friend, and someone who I delighted in spending time with him. I think that’s the most recently revealed “hurt” to me is dealing with the loss of my best friend, in addition to the loss of my spouse.

For the most part, I like being around people—just not interacting with them. I wrote the majority of this blog post at a coffee shop. It’s a beautiful, sunny day in Chicago. People are out and about. It’s entertaining to watch the passers by and the dog walkers. After I finished up there, I went to Montrose Harbor to take some photos from my favorite vantage point. It was cold and terribly windy. My fingers numbed up fast, so I didn’t get that many shots, and it was so cold I didn’t care. You can see from the spray and the waves about to break that Chicago lives up to its nickname.

On the bright side, my research indicates SID is curable, but abates in its own time. On the brighter side, when I’m hanging out with myself I’m often the funniest person in the room—and sometimes the most handsome.

I got an email from my girl Kathy the other day. Just a short note while she was at work to tell me she loved me (as I’m so fortunate to hear regularly). She signed it about loving me truly, madly and deeply. A memory conjured for me.

When Ken and I first started dating, I was over at his place for a movie night. We got serious—but silly—very quickly. We spent much of our time at is place because of his beautiful Chow Chow Quantum. After spending only moments with her on my first visit, I immediately understood why I wouldn’t care that we didn’t spend much time at my place. One night Ken was set to show me some of his favorite movies, and first on the list was Truly, Madly, Deeply. He’d talked about it a lot, so it had really been built up in my esteem. He knew all the romantic lines. But as I think about it, I don’t think we ever finished the movie (wink, wink, nudge, nudge, need I say more?) But I still remember lying on the couch with him, pressed against each other watching the movie. Well, he was watching it. I was entranced in the moment of being so close to someone I was so newly crazy about; that I had such a handsome, dynamic, and utterly delicious man who felt the same way about me. I did my best to pay attention, but it was difficult. I was watching a different movie. About us. And I was riveted.

I don’t really recall all the specifics of the evening, but I do remember the sparkly newness of being in love. And being worried about all the ways I’d choke and screw it up something so seemingly beautiful. Though we had ten years together and became ultimately comfortable with each other, I often thought back to those early days—the excitement of learning about this man and what our future would look like. I think of that time know and I can’t stop grinning. Ken was a true personality. He was as smart as I was sarcastic, and I was as simple as he was complex—like a puzzle to figure out. Every day little tidbits of our interactions would reveal something new. Somehow, for me, he was always able to recapture moments like that for me throughout our relationship.

And certainly the title of the movie meant something for him to show me, and so obviously described our feelings for each other. It’s nice to have a surprise—just a closing in an email—that could evoke rich memories of just one evening sometime in 2001. A wonderful memory.I ‘m not sure when I’ll be ready to watch the movie, but sometime in the future I’ll have to do it.

It’s another example of a phenomena that I can’t help but wonder if it’s just coincidental or…maybe it’s him. I prefer the latter explanation.

My suggestion is grab your honey, hop on the couch and queue up TMD and watch your own movie on the TV—or in your head.

What is it about a day off work that can make you feel like the possibilities of the day or innumerable and exciting? Also, this streak of spring-like weather doesn’t hurt either. (I wasn’t aware today was President’s Day when I scheduled this day off a couple of weeks ago.)

Since I was foiled in my attempt to get some coffee shop writing time yesterday, I re-upped the effort this morning. I had great success today at The Perfect Cup. It instantly became a new favorite. I hadn’t been there in over a year and was surprised to see it had been completely remodeled. I’d only been there a handful of times with friends. (SIDE NOTE: My first visit there a hundred years ago and served as the meeting place for a horrific online date.)

While sitting at the coffee shop, I was wondering why a mother would bring two tiny kids into a tiny coffee shop and let them wander so freely near full cups of coffee and expensive laptops. While IM’ing with my friend Mark we brainstormed ideas for a “child unfriendly” coffee shop chock full of sharp edges, jagged glass and butter knives stuck into electrical outlets with “TOUCH ME” signs on each one.

It was another spring-like day in Chicago, I was drawn to take a drive to the lake. There is a spot Ken and I loved to visit on occasion. It’s still a favorite spot. There is something so powerful about being near the water. And the view it provides of my beautiful city always leaves me a little dumbstruck.

I drove a little further down to the Dog Beach—another frequent kenron stop. There were lots of people out and about, taking advantage of the sunshine.

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:

“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.

I haven’t had a chance to sit down and blog this past week, though—as always—I have continued making notes on things that strike my fancy, and that I think would make for a good blog. Until I have time to sit down and write something more substantial (the wheels are already turning), I wanted to share this photo. I was on my way out the other day and happened to check to the mail as passed. I pulled out an official-looking envelope that was addressed to Ken, and looked like tax information. A bummer on both counts. Getting “official” mail for Ken can be painful; somehow a heartless reminder. My heart fell as I got mired in my loss, then after my hand fished around in the mailbox a little more, it came up with this:

Just the words “Uncle Ron” handwritten on the envelope set my chin quivering—if only for a few seconds. It had chased away the sullen feelings the first piece of mail had brought on—and then some! It made my day and, since then, my week. It has occurred to me every day, and I love it—and the sender! (Coincidentally, today is his twelfth birthday.) I did send a card, though a day late, I’m afraid.

Sending handwritten cards is a practice I used to do more often, and this sweet note is a reminder I need to pick up the pace again. There is nothing like getting a surprise note from someone you love. Nothing.