Spider, Joy and Roger

D9279920-C8D1-4CF0-AFF0-F7BCF72C6095The other day I watched a spider crawling up the shower wall. The walls are solid marble or fake marble, but nonetheless, slick when wet. The little thing would make a little progress, slide back down and then start over at a new spot. The same behavior over and over. It was still struggling away when I got out of there and moved on to the next part of my day. But the image of its efforts remained in my mind. An epiphany popped up. I realized that I’ve essentially been doing the same thing as the little spider since Michael died. Making some progress in trying not to drown in grief, slipping back down the wall, and then trying another spot that might be less slick. 

While pondering this little metaphor, I realized that long ago I’d unwittingly set myself up to have a particularly terrible time with grief. As a teenager, I somehow got myself into the mindset that the really good times were the ordinary moments that a person experiences in everyday life. I saw lots of momentous events come and go. Many of them were overrated and disappointing. There was so much pressure in trying to create a perfect event. In my life I saw people fighting over lackluster parties, weddings and funerals. Nothing ever turned out according to plan. I remember the graduations which were so fraught with expectations that fizzled as the graduates had anxiety attacks and family members jockeyed for a place of importance in the success of the graduate.

2A0D1F9E-20B4-4903-A3D1-20DEF738EE67On my eighth grade graduation day, my baby cousin died and my parents couldn’t even attend to see me march in my sister’s prom dress, with my honor roll pin in the middle of my dangling blue and white ribbons. I’d barely turned thirteen. But I was thinking away, trying to figure out how to squeeze a little joy out of every day, rather than counting on the big life events for happiness, for joy. I was going to demystify the big deals and go for the small ones.

I became skilled at finding the nuggets of good, some tiny, others larger. How about a cloud? A flower? A painting? Perhaps a bird or a beautiful insect. Putting my feet in waves at the beach. Eating when I was insanely hungry. A song. An unforgettable line from a book. A scene from a movie. An embrace. A dizzying kiss. A loving pat on the ass. This was the stuff of true joy. Not all those things I was taught to wish for, to dream of, to set as my goals. My joy was inexpensive and easily accessible. Sometimes a few seconds were enough. An hour was stupendous. I developed my theory about coping skills. I knew that life was constantly challenging, that everyone had to cope with unexpected or unanticipated problems. So what was logical to me was that the people with the best lives were the ones who’d developed the best coping skills. I would be one of them. And the little daily joys were paramount in helping me cope. I spread the word to my family and anyone else who would listen. The itinerant lecturer, as my beloved son wryly tagged me.

And the truth is, I was right. That skill set served me well the bulk of my life. I could adapt fast and twist a negative to a positive just by glancing around my environment. I made a great first responder to all bad news. The queen of silver linings.

During Michael’s five years of the cancer rollercoaster, we squeezed what we knew would be our limited retirement into every moment of good health. We traveled as much as we could and saw grand geological vistas and beautiful oceans. We saw wild horses running on the beach and dolphins leaping into the air. We ate delicious food. We savored holding hands in the movie theaters while we shared popcorn.

We listened to live music and ate funnel cakes at funky festivals. We went to museums and saw powerful art. We worked in our gardens and read books next to each other. And we lay in each other’s arms every night. All the coping skills which made the tough stuff of life more manageable. We did the best we could.

Since he’s been gone, I’ve felt flattened out. I’ve done some fun things. I’ve spent time with my loving children and grandchildren. I’ve had my close friends get closer and be present for me. I’ve traveled and appreciated natural beauty. I’ve taken classes and gone to concerts. I’m out there in our garden which still looks so beautiful. But I haven’t felt joy. All those small things I found to create havens on the darkest of days added up to what joy felt like to me. I stopped looking for the big events long ago. Putting my feelings into such weighty and tenuous events was the opposite of joy to me. And I’ve missed the feeling. Michael’s constant presence was the underpinning to my zest for life. I didn’t really understand that. I knew we had what we called big love. From our very beginning to his end, we were enveloped in each other and nothing, not the worst of times or disagreements,  ever touched the powerful intensity of what held us together. I still ponder that bond every day. I even stole the title of a book about Claude Monet I read recently,  which accurately described how we felt for each other – the mad enchantment. That comes close to the description of us. But that lives in a private space in me. I can go there when I want to and I can feel us. But what about now?

I have many passions and interests. I like spectacles. I love the Olympics. I love the Triple Crown even though I worry about the horses. I love awards shows.

I also love Roger Federer, the GOAT, the greatest of all time.

EB2162F2-50D9-4760-B96D-01ECD4D2A467I’ve watched Federer play tennis since he was a boy, mostly because I’ve been watching tennis for a long time. There are few sports I don’t like. Over the years I’ve had so many people tell me they think it’s odd that I’m so interested in all the competition and negative energy that’s so often present in the sports world. I get it. I see it. But I love sports anyway. I got started by loving to play sports myself, even though I was embarrassed and humiliated by some of my skills. When I was a kid, I was teased about my ability to hit a softball and toss a football. The boys called me “moose.” The Chicago White Sox had a lefthanded player named Moose Skowron – hence the terrible moniker. In eight grade, a lot of kids wrote to me as moose in my autograph book. When I showed it to my son,  he cried at the meanness of people as he imagined me as a young pained girl.

But I stayed interested. I sat with my father when he watched sports on television and I learned a lot about all of them. And I went further and found favorites of my own. I was so happy that my kids were both great athletes and spent happy hours watching them excel.

But Federer. As he evolved and matured, I marveled at his athletic grace and beauty. So light on his feet and so natural. He worked on himself and erased his early bad boy behavior and became a calm, contained presence on the court. A welcome relief from some of the “enfants terribles” who are so prevalent among the many players. Best of all, he grew a social conscience. With the millions he earned he started a foundation which is dedicated to educating impoverished children. This year alone he’s started over 80 schools in Zambia. If you look him up online, you can see pictures of him sitting in the dirt with children crawling all over him. He plays with them and stands in front of chalkboards teaching them. Federer.

My family and friends tease me mercilessly about my devotion to this famous stranger who exemplifies so many good qualities to me. They call him my boyfriend. I know who my boyfriend was and still is – my Michael. But…

2B0A553A-40F0-4E26-BE58-1384274B42F4During Michael’s last months in 2017, Federer was returning from a six month layoff because he’d had knee surgery. In January, 2017,  he was returning to competition in the Australian Open. He is considered old for tennis now. He was 36 then. Michael had gotten clean scans from the doctors but I knew he was sick. After 45 years of living together, I knew him well enough to recognize a problem. But I couldn’t prove it. We were arguing. At odds. During the Australian Open, I sat up late through the nights to soothe myself by watching Roger play. And miraculously he won. My happiness carried me through the beginning of Michael’s end which began at the end of that month.

Michael died in May, 2017. Suddenly I was alone in our home. But coming up in July, there was Wimbledon. Federer pulled off another miracle and won that tournament too. His success helped bookend the hardest months of my life. 228837D3-9907-4E61-B628-E4A91F733211

This year, I was casting around for something to anticipate, some pleasure to distract me from my absence of joy. On a whim, I thought, what if once in my life I could see Roger Federer in person? What would that feel like? I decided to buy tickets for the Western Southern Open, a run-up tournament to the U.S. Open that Roger had won several times. He’d skipped it last year but I figured, what the hell? If not now, when? A four hour drive from home? You bet.

I anxiously waited to see if he would decide to play the tournament. He’s picking and choosing, now 37 and not likely to take as many chances with his body as he did years before. It could be this one or Toronto. He chose this one, in Cincinnati, Ohio.

I arrived here on Saturday night and Sunday went to the tennis venue to watch a few early round matches, but also to see Roger practice. I’d been told that the practices were almost more fun than the matches. I carefully found his practice court and planned my strategy of arriving early enough to be close to the fence which keeps the public at bay. With knees due for replacement, I needed a strategic plan.

I arrived at the site to get near the front and experienced the hot, sweaty crush of his many fans, jostling for a good view. I spent over 2 hours on legs that felt like lead. But I was determined that this was my one shot and that mind over matter is a thing. I kept my eyes on the entry gate. And it suddenly swung open and he appeared.

Is there such a thing as levitation? That’s how I felt. There he was, in my real life, breathing the same air as me. And then I had the pleasure of watching him swing his racket and float on the court which is what he does. I have photos and videos to prove it. I was there. And I felt joy.

I still feel it. Tomorrow I’ll get to see him play a match right in front of me. I’ll keep that with me the rest of my life.

And more importantly, I’ve learned from a little spider and a famous tennis player that I can modify my skills for life as its demands require me to do, in order to experience more of that joyful feeling I thought was gone forever. Different joy. But joy nonetheless. I don’t know what comes next. But a little more hope has inched through my internal seal, through the door I thought might be closed forever.EDCE89ED-151D-4182-9241-C6F7A5C72204The Colors of Joy – Arran Skyscrapers – Penny Gordon-Chumbley

Expensive Secrets

729FAC1A-BABB-4FE2-9A13-29485B3D749BToday, this song, written by Michael’s beloved Grateful Dead, comes to mind as I wrangle with my conscience on my own, in his very apparent absence. I am down to myself on this road. Though I still hear him in my head.CE4B5CB1-0EE5-4F72-86AA-6DC032618DBD

 
Ripple
 
If my words did glow with the gold of sunshine
And my tunes were played on the harp unstrung
Would you hear my voice come through the music
Would you hold it near as it were your own?
It’s a hand-me-down, the thoughts are broken
Perhaps they’re better left unsung
I don’t know, don’t really care
Let there be songs to fill the air
Ripple in still water
When there is no pebble tossed
Nor wind to blow
Reach out your hand if your cup be empty
If your cup is full may it be again
Let it be known there is a fountain
That was not made by the hands of men
There is a road, no simple highway
Between the dawn and the dark of night
And if you go no one may follow
That path is for your steps alone
Ripple in still water
When there is no pebble tossed
Nor wind to blow
You who choose to lead must follow
But if you fall you fall alone
If you should stand then who’s to guide you?
If I knew the way I would take you home
Songwriters: Jerome J. Garcia / 
Robert C. Hunter4FF94BB8-E747-4640-87A7-1334E34B83EC
 

Expensive Secrets

When you go through a years-long cancer journey with your spouse which eventually culminates in death, you begin your own, new, years-long interior journey. After your partner  receives a negative prognosis, time is spent focusing on the now in an intense, pressing manner, trying to capture every moment, to feel it with all your power. The focus and concentration are elevated, almost the way it feels like taking a final exam at the end of a year, the pressure so much greater than the whiling away of an hour a few times a week. Yes, every day is huge test. 21154D16-6825-4DE3-A25E-1CA651F61003
I called my mental state hyper-vigilance. I was always on the watch, trying to anticipate problems which might be averted, trying not to get distracted by the small annoyances that we used to be able to afford in our life with each other. Living mindfully, aware that any moment what was taken for granted could be gone. We filled the healthy times with travel, family, movies, music and lovemaking. We squeezed our remaining life together for everything we could. And then, despite our best efforts, death came, and only I was left to sort things through.76DC1C23-4B86-4EFB-A2C3-55DF2B5F5504
I’ve been doing that while trying to establish a reasonable life just for me. I’m trying to remember and record everything from the goofy phrases Michael sprinkled into daily conversation, to our decades of adventures, from the smallest experience to the greatest moments of our life. I want my children to learn what came before them and what was of value to us. My kids know Michael’s secret handshake and that when one of us says, “check,” “double check” is the correct response.
I catch myself thinking about how my husband,  the gourmet cook,  loved to eat chunky cinnamon applesauce straight out of the bottle, and that sometimes he snacked on potato chips dipped in ketchup. Yuck. I remember his hideous liver sausage sandwiches with sweet bread and butter pickle chips. I was proud when I got him to ditch Miracle Whip for Hellman’s real mayonnaise. But I could never get him to eat my chicken liver pate, arguably the best on the planet, choosing that icky deli rolled mystery meat instead.3B8E40E9-FD02-483C-B689-AC3D175DC62E
As I wander through this minutiae, I wind up in the bigger, deeper components of our relationship. Michael was my best friend. He knew me better than anyone else ever has or will. We came together barely out of our teens. We each brought a self to each other. Over the course of time we had the great fortune to build a mutually agreed upon set of principles and a moral code that were the foundation for our family . We were almost always in essential agreement about the important parts of life. I think both of us needed that solidity. Our united front was a great comfort as we passed through the decades, evolving and maturing as we went along. 0AB84458-3DFF-417E-B8D5-9508D39349FF
But we had some basic differences. I was aggressive, virtually all the time, while Michael doled out his aggression in smaller slices. I wanted to confront everything as it happened, relying on ability to think on my feet and my verbal skills to tackle any problem head-on.  Michael took his time and pondered, much to my frustration on many occasions.My style was frustrating to him, too.
Both of us were well known for being trustworthy. Secret keepers. Michael was more introverted and quiet so his maintaining silence about peoples’ confidences was no surprise. I, on the other hand, was always amused by the fact that since I’m outgoing, incredibly verbal and never met a subject I thought was off limits, was actually just as quiet about my secrets as he was, a fact that entertained us both. Over time, my openness and receptive nature brought me many more private problems shared by a wide variety of people. Sometimes it felt like a lot, but I had the comfort of Michael to defuse the weight of so much responsibility to the needs of others. I never told him everything I knew nor did he tell me everything. That would have broken the trustworthy ideal we both shared and afforded to others. But having him around helped me all the time.
We had many conversations about those confidences that had been deliberately shared with us. Not the actual subject matter, but the significance of the general issues. Many of them meant a lot to the individuals who unloaded them, while we thought they weren’t that big a deal.
But there were other secrets, ones that crossed invisible boundary lines. The ones that were shared to relieve the teller of the burden of carrying it alone but which in turn, threw an unsolicited weight on our shoulders, and most particularly mine. I got a lot of the deep debris, the dark stuff. The kind of secret that places you directly in between people you care about. The kind of secret that becomes a personal burden, one which over time becomes very emotionally expensive to bear.
Secrets like these test your personal ethics. Michael and I spent many hours in our life, struggling with the morality of baring secrets to unsuspecting people who had false impressions of the significant people in their lives. The question always boiled down to one central theme: if you unload what you know, is the purpose to relieve your own pain? Or will what you say simply hurt the receiver who is better off living in the dark? Wanting to dump your burdens, especially those you didn’t create for yourself seems like a normal, healthy act. But if you’re just passing the pile to someone whose innocence is perhaps annoying, but was created by another person’s actions, can that be anything but selfish? And selfish was on our negative list. Causing pain so you can feel less. A tough moral dilemma. 
When Michael was around to absorb some of my frustrations about these kinds of issues, life felt more manageable. But when he left he took a lot of my patience and many of my filters with him. Left to my own devices, and being angry that he’s gone which of course, is irrelevant, but real to me, makes me struggle in an internal debate.
I’m tired of this load, it’s not my fault, how about I just let it loose and move on, a little lighter inside. But will I really be lighter? If I dump our 45 years of building a set of principles, what will I really feel in the end? And what about the unsuspecting innocents? What happens to them. 
So the philosophical dialogue continues between me and me. What’s stronger, my need for relief or my commitment to trying to make the unmanageable world a little better for someone else? I’m no martyr. But principles mean something to me. So does truth. Sometimes they don’t go together.
Death shakes up everything.
I don’t think I’ll ever be done sifting through all these thoughts. But I’m working on it. 
D0712065-D2C3-4E57-9171-1DE6F9514690

Technology Is My Friend?

I find myself in the midst of a conflict of social platforms, WordPress and Facebook. This note is not for those who have chosen to follow my blog by getting notifications through their email. Rather, it is for those who read my meanderings on Facebook. This is a test to see if I’ve circumvented the issue that’s been created. Please bear with me, friends, while I test my intellectual mettle against the power players.

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The Real Magic Mike

D108CDF2-7C9E-4CE9-8930-227F5BFFAD29Michael died 422 days ago. That’s only 2.65% of the 16,425 days we lived together. Apparently at about 365 days, the grieving partner is supposed to have recovered to the point at which, along with participation in normal life, the capacity for joy returns. I guess I’m an underachiever.

The truth is, this second year feels harder than the first. The fatigue, the shock, all the activity associated with a life’s end takes up a lot of time. I’ve been incredibly busy since Michael died. My lists remain undone at the end of each day. Always more to do. The legal business is done. I threw a big bash to celebrate the rich, complex life Michael lived. Now I’m deeply involved in planning my 50th high school reunion. Those are the objective realities. I’ve taken classes, traveled by myself, created art and started a grief support group. In certain ways I’m the poster child for the median time for societal standards of recovery from grief. E9815038-0FD6-4EEC-B7C8-869E13DD6FD0

But what is actually of note is that none of these activities has allayed the deep pain I feel.  The novelty of Michael’s absence is so over for me. I’m done with it. I’ve proven that I can deal with it. Check. Now, I’d like him back. Right away. Yesterday. A pretty unreasonable stance, I know. I still can’t believe I don’t get to see him or speak with him again. One more hug. C1A77B7A-F97F-443D-B141-25A67DB267A2

By this time, most people who are still partnered up have stopped thinking about what daily life is like for me. Adapting and moving on is what’s supposed to happen. I appear to have done that. I’m doing life, too, just like them. But the crushing empty space where Michael is supposed to be is always right in my face and on my mind. A constant awareness. I’m not prostrated by grief every day and I’m not crying all the time. Still, the ache is always present, and no amount of my letter writing or my occasional good dreams can fill that chasm. A0C86F0F-8515-4EF7-96ED-568402CDD859

I try to think about the future. Michael and I had time to discuss what might happen to me. He wanted me to be happy. He wanted me to share my energy with someone, to not be lonely. As I listened to him, he knew I was looking at him in disbelief. Another intimate relationship for me? Unimaginable.1116FA33-3636-4869-8CA4-22204EBDC461 

So what about this guy has blotted out all thoughts of another companion? I know plenty of people who find a new person to be with, perhaps not with the same feelings, but still, someone to share the rest of what’s ahead in life. The thought of that is alien to me and completely undesirable. I never think about it. Why? I am fixated on my husband. Who was the real magic Mike? Why is his hold on me still enormous, his mystical presence so powerful for me? I remain very married. 75E52488-0C48-4EDD-A799-C0B02720F1AC

I knew the first day I met Michael in 1971 that something big had happened to me. That was most interesting because at the time I was madly in love with my first real deal, Al. The guy who made mincemeat out of my heart and reduced me to a neurotic, sniveling mess for a few years. When I read my journals from the years we spent together, I feel humiliated and barely recognize myself. I was very young and didn’t have the strength to divest myself of what in retrospect, was a toxic, immature relationship.45CF4C15-D952-41E2-96DE-2022569007FF

I think I was always looking for big love, even as a kid. Though my parents led far from a perfect life, their obvious passion and support for each other became my role model. I looked around the world of the late 60’s and chose to be very cautious in my personal life. I didn’t want to make a mess and I didn’t want to look back with regret on bad personal choices. So I was very careful before giving my heart away. I had high school boyfriends and one in particular that lasted through my freshman year of college. But that fizzled out. Those loves were baby steps. When I began my sophomore year, I was unattached, open and still pure, holding on to my virginity until I met the guy I was going to marry. I may have been the last innocent I knew in those years of “free love.” I was holding out for the brass ring. 9B3038B3-EA4F-4BCE-BFE8-79B878AF8520

I’d met Albert briefly at some street dance as a freshman. What I remembered most about him was that his dance technique mostly resembled the consequences of sticking your finger in an electric socket. I forgot about him. But in October of 1969, when I ran into him on the south portico of the student union where he sat strumming his guitar, I felt a spark. Through the next four months it was the classic spark turning to a flame. I was still holding onto myself with a significant amount of caution. On New Year’s Eve that year, when he brought me home from our evening out, he whispered, “Just for tonight, I love you.” Talk about a red flag. I should’ve run the other way immediately.

But I was dazzled by this guy, mostly by his oversized brain. He was incredibly bright and for the first time in my life,  I was with someone who didn’t find my intellectual ability intimidating. That’s not the same as liking it, however, but I didn’t understand that then. Ten months passed, many of them tempestuous. We argued a lot but I thought the up and back was worth it. True love. We would expand each other’s consciousness and grow. I thought I’d found my life partner. I was nineteen years old. Finally I felt ready to commit myself to this guy I figured I’d marry as soon as we were done with college. I was ready to take the big plunge. I had sex for the first time. Things didn’t get any calmer. I spent most of 1970 and 1971 in a devastating emotional ride of breakups and makeups. I couldn’t think. I couldn’t concentrate. I lived on one track, trying to keep my dream of being like my parents, one lover for life, alive. I disgusted myself.9C2F761F-E649-4E3D-AF6F-1C77F2DA2D54

           Interim boyfriend.

In 1971, I finally dated someone else besides Al. He didn’t like that much and we continued our torturous journey, splitting apart and rejoining. He had a lot of random encounters with women while I stayed as true to myself as I could, being with only one other person who I inadvertently tormented as my heart was always somewhere else. I still feel badly about that.  I never did “casual” very well. I always thought it was a superfluous waste of my time. 

I didn’t trust Al, ever. I knew that he wasn’t ready for what I wanted. He always told me that I functioned as if there was only the all or none hypothesis. I think he was right. I thought I could force him to be ready for a committed relationship which was a huge mistake. So I limped ahead with my self-esteem in shreds. I had trouble concentrating on school and was buffeted around by the swirl of unsettled feelings. 

I decided to focus on politics. I was active in the anti-war movement, the women’s movement, the civil rights movement. I made different friends. I wasn’t in the best mental shape but I wasn’t lying on the couch with the vapors, either.

 

In the summer of 1971, I was working, living in my college town and hanging out with people in the alternative community. I was invited to a wedding that August. The day before the wedding, I was at the home of some friends who had made the wedding cake. People were coming in and out to have a look at it. A couple walked in the front door, the man a very tall, thin person with auburn hair, a big red mustache and a beard. I was introduced to Michael for the first time. I’d heard of him before. He was infamous for tearing out the telephone system in his fraternity house after his “brothers” rigged a way to eavesdrop on a private conversation he was having with a girlfriend. He moved out of the fraternity shortly thereafter as his personality and that lifestyle were a mismatch. When I’d heard that story three years earlier, I’d pictured him as short, dark guy with glasses who’d been bullied as a kid and had developed a persona with an agitated affect. When this long, mellow string bean showed up, I remember laughing to myself about how wrong perceptions can be.

 

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The next night, I attended the wedding which took place in the backyard of a rented sabbatical house. Hippie-esque was how I’d describe the vibe of the event. The bride wore a long dress and the groom a cotton shirt with needlework flowers and vines sewn on the neckline and cuffs. The parents and most of the guests were mostly obliterated from imbibing a variety of alcohol and drug offerings that were being passed around like hors d’oeuvres. I remember the bride eventually vomiting in the front yard and professing that she really didn’t like anyone at the event.

I actually felt pretty relaxed and glad I could enjoy myself during another of my Albert droughts. At one point, I wandered into the back yard where I saw a male friend and Michael lying on the grass, their heads resting on a log. There was a space between them that looked just right for me. So I went over and laid down between them. As we looked up at the stars there was silence. But it wasn’t particularly awkward silence. In my drug-induced haze, I felt like these two males, not well-versed in the art of communication were sending their positive connection through me. They clearly  weren’t skilled at verbalizing.  So as I am wont to do, I started talking for all of us. They didn’t seem to mind. And as we lay there, I remember feeling that Michael was emanating these inexplicable wonderful feelings toward me. I didn’t know him at all but he felt familiar, soothing. I generally operated at a pretty speedy high energy level as I still do. He felt slow and relaxing.  As I write this, I’m still at a loss as to how to describe this unusual interaction that was all sensation, a subversive current of non-verbal dialogue that warmed me in a way that was so different from anything I’d felt before. Eventually we all got up and mingled with the rest of the guests but Michael and I stayed near each other.554F7623-EFF0-4627-8DDE-8230D30262B5

His girlfriend became furious with him and grabbed his car keys and took off in a huff. We wound up staying at the event until dawn, helping the host clean up and eventually, heading toward our mutual friend Mark’s house. I was supposed to leave that day to visit my parents in Chicago and was getting my ride from him. When we showed up, Michael’s girlfriend stormed in and proceeded to lambast him for his behavior the night before amidst this small group of people. Michael sat silently on the floor with his knees drawn up and his arms folded across them. I felt badly for both of them and tried to do a little damage management and counseling which produced nothing but negative feelings. Finally, I said I was going to withdraw. I barely knew them.  The only word Michael uttered was, “don’t.” I packed up and went to Chicago for a few days. 

When I returned I called my friends and asked them how to get in touch with Michael. I called him and asked if he’d please come and visit me because I liked him so much without knowing anything substantive about him. He came to my house that day and without the blur of any mind-altering substances I felt the same way about him as I did on the night of the wedding.2C5891AA-CC45-4F35-BDEA-8F350823A6A1

We talked for hours. I told him all about Albert and my problems and he told me all about his. Our level of comfortability and intimacy was instantaneous. We were best friends. Just like that. We began to spend a lot of time together. 

Within a few weeks, Michael moved into an apartment down the block from the one I shared with my roommate. While I seesawed through my relationship with Al, he and I spent long hours together, talking, listening to music, or just lying around hugging each other in the most comforting way. After awhile, I started feeling confused about the ease with which we were building this incredibly close friendship. Was this just friendship? How could I be wondering when I was still so deeply in love with someone else? Someone who made me crazy but who was still my desired life partner?

I decided to tell Michael that I wasn’t exactly sure of what was happening between us. His interpretation of that comment was that I wanted him to disappear. After a week or so of his absence, I went to his apartment to ask why he’d vanished. His life experiences had made him develop a rabbit hole that he plunged into when he felt criticized or threatened. He was sensitive and insecure. I learned that pretty fast. After convincing him that he’d overreacted,  I invited him to my place for our first fire of the fall. We picked up where we’d left off, growing whatever this unusual, magical bond was between us. I managed to keep my questions to myself.

23627c5b-647d-4005-8c76-fd60130f9305.jpegFall turned to winter. To escape the emotional turbulence of my life, I planned to go off on a European adventure with two friends in January. I felt that as the end of college was approaching and my marriage wasn’t on the horizon, I needed distance and a change of scenery to help me figure out what to do next. Michael volunteered to care for my dog while I was gone. Shortly before I left town, we were standing in his kitchen, cleaning up after dinner, washing dishes, laughing and chatting. He bent down to kiss my cheek but I’d turned my head slightly and his mouth landed partially on the corner of mine. I still remember the hot current that ran through me, leaving me stunned. That was the closest thing to sexual contact that had passed between us in the 5 months we’d been spending time together. 

There wasn’t opportunity to think about it as I left for Chicago within a few days to be with my family before leaving the country. I wrote Michael a few letters in a short period because I missed talking to him. No cell phones in those days. Then the weekend before I was leaving, he showed up at my parents’ place for one last visit with him and my dog. It was a surprise visit. I was pretty overwhelmed by it and even more muddled as I continued to struggle with my feelings for Al.C48992B8-D203-44BD-8DA9-49A097C23598

My friends and I had arranged through a rental agency to drive a car to New Jersey and then hop to New York for our flight. I spent the many hours in the car, thinking as hard as I could about what was happening to me internally. I realized that what had evolved between Michael and me, the friendship, the trust and the comfort were really what love was, not the explosive fighting/breaking up/making up cycle I was in with Albert. I loved Al,  but his being so unprepared for what I wanted had splintered me and made me feel unsafe and paranoid. So unhealthy. We stopped in Philadelphia to visit an old friend and while there and at a safe distance, I called Michael. I confessed that I was pretty certain that I was in love with him. His response? “Far out!” And then I went on to New York, boarded a plane and left the country for almost 3 months. 38CB2D82-18F5-4F9C-86F2-42EB19706C59

I was gone, away from the turmoil. The feelings stuck. And they grew. I wrote Michael letters and postcards every day while I was gone. Being away and immersed in new cultural experiences was really good for me but I missed our conversations desperately. My friends thought I was barreling forward at a crazy pace but I was going with my gut. Every time we arrived at a major city, I ran to the local American Express office where I could receive international mail. When  his replies were waiting there, I was buoyant. He was the first person to ever send me a telegram. We weren’t exactly writing love letters. Both of us were nervous because of the bomb I’d dropped when I left. But our attachment was real. I did write some letters that I never mailed. I was afraid I’d scare Michael when I was writing my raw truths. But I saved them. The fact is, I have all of our letters and postcards from that spring of 1972. We both kept every letter or note that we wrote each other. 

So on it went. I still struggled with my emotions for Albert. I have a deeply loyal streak and what I felt for him was real. But his inability to handle us was wearing thin. And Michael was moving into the core of me. 

I returned from Europe in April. After spending some time with my family, I went back to Champaign to collect the pieces of my life and decide whether to stay there or return to Chicago. The first person I saw on campus was Al. Within a few hours, I was with him in his apartment. I went to visit Michael and my dog. We were warm to each other but holding back. It only took a few days before I realized that  Al was uncomfortable living as if we were a couple. He was going away to grad school in California in the fall and I could feel that he wanted to maintain his independence. I was done. I packed my suitcase and went over to Michael’s place. He asked what I was doing. I told him I was going to move into his apartment for awhile. He asked where I would sleep and I responded, “in your bed.” We’d never even shared a kiss. The first night we just lay together and talked like we always had and finally passed out. Our transition from friends to lovers happened the next day. We never lived apart after that. I was 20 and he was 22. 91DAA666-C1AA-4BB2-A97B-2B5DBC83A819

As time went by, the relationship deepened. Our friendship was our go-to place. I’d never trusted anyone the way I trusted Michael. He routinely put my needs ahead of his own. Although I was emotionally battered and frightened of being hurt, I slowly began to heal, piece by piece. Within a year I was able to tell him every dark secret of my life, all my guilt, all my shames, all my wrongs. It was like shoving boulders off my chest. Being next to him felt like being gently sedated while still conscious. I’d felt for years that I could spin off into the universe but he provided a gentle tether, like the string on a balloon. He was magical. I used to imagine a zipper in his chest that I could pull down so I could slip myself inside him to be surrounded by the comfort. That ease was coupled with our growing passion for each other that was finally released after months of denial. 

And lucky us, the friendship and the passion we shared grew. We managed to head in the same direction. During our first few years there were hard times, disagreements and doubts. Both of us had strong opinions. We bickered and clashed, trying to figure out if we could stay together. We were so young. But the foundation we built sustained us and eventually the rhythm of our life was steady and smooth. After a few years passed, there were no doubts left between us.  He was the magic for me as I was for him. We made each other strong. We fought for each other. F9441B61-F4DB-4466-8082-4C1D760F38DA

When he was diagnosed with his rare cancer and given his dark prognosis, we were devastated. We thought we had so many years left to enjoy each other. His parents were alive, in their 90’s. We felt robbed. But we found our way through those five challenging years and the fire never died. Neither did our friendship. We took turns helping each other and talking about everything as we’d done since the first night we met. Michael faced his disease with courage and heart. I was his advocate and constant companion. During his healthy days, we traveled and made memories. During the scary dark times, we held tightly to each other and clawed our way through terror.  We shared all of it. Our communication and passion sustained us until his last days when, finally communication and lovemaking finally ceased. Then I whispered to him, played our music and held his hand until the end.78DB6115-A414-47D0-9C22-62F0E32B5FA9

Now I am still writing him, the way I used to speak with him. Events and feelings are more complete for me when I direct them toward him. I know that what we shared was more than many people ever have in their lives. I recognize my greed for more, but I forgive myself. I also recognize that my ability to function well as I do is partially based on what we shared which still buoys me when I feel like I’m sinking. CF56F0E6-4CCB-4EB8-B57E-6EEA3AAC1BC5

Michael was my unicorn. My magical being. I remember our bad times, our fights and what habits he had that annoyed me. But mostly it’s the magic, still beating away inside me for as far as I can see. Saying it aloud helps me cope. Maybe it makes people uncomfortable. I can’t worry about that. What we had made me strong enough to know that now is my time to acknowledge how I feel. Maybe some person who reads this is in my shoes. Or maybe someone will be. This is my truth in this time. Don’t believe you have to be anyone other than yourself. I’m still hanging with my guy. And someone else’s rules and opinions don’t apply. 

 

Magic Dirt and Me

 

6D7AB0E6-E314-49AE-89E4-EBE0DB453125When I was growing up, my parents owned a house for about 5 years in Sioux City, Iowa. We lived there until I was seven. Dad was always at work, selling water conditioners and farm implements, a real leap from his city jobs. He’d gone into business with his brother-in-law after drifting from one unrewarding position to another in Chicago.

My Mom was juggling four kids and sometimes six when our cousins came to live with us. She was not happy living away from Chicago, being near my dad’s sister and her family, people she never really liked, and feeling like she was existing in a rural desert, so alien from her big city life. Mom always liked the action of city streets and all the people watching you could do. She liked the infinite variety. She was like that her whole life. Neither of my parents was much interested in the outdoors, although my mom appreciated natural beauty. She always mocked my dad for saying, if you’ve seen one tree, you’ve seen them all.

7F9E7050-FD21-4F87-B9AB-7812A50CB8B2I spent a lot of time outside. I was an active child, distracted from the big outdoor world only by reading. I mostly played with my younger sister and a plentiful group of neighbor kids. We made up stories and acted them out, held long games of hide and seek,  and played catch. But I had other interests. I remember standing  at the fork of 23rd and McDonald streets, the corner at which we lived, intently watching bees disappear into the blossoms of a tall stand of multi-colored hollyhocks. Miraculously, they re-emerged after a short time. When I stuck my face in the flowers after the bees left, I always wound up wearing a yellow nose. I didn’t know what pollen was back then. 

61074B15-43E5-464D-9A64-4DD8307FF3BBI also got my mom to make me an insect container, usually a pickle jar with holes poked in the lid. I filled it with twigs, leaves and grass and went off to hunt my favorite caterpillar. I didn’t know its name then but I never forgot what it looked like. This is the white tussock moth caterpillar, much more beautiful in this stage than as an adult moth. They were everywhere in Sioux City. Once I found one on a leaf in my current backyard which made me absurdly happy. If I stood patiently under a tree back then as a kid in Sioux City, I was often lucky enough to grab a tiny, slender, translucent caterpillar that was making its way to the ground, squiggling on a slender thread of insect silk. I’d catch these and watch them inch across my skin before letting them go. I loved the way they moved. 

My parents didn’t pay much attention to what my biological interests were. Mostly they talked to me about how dirty I always got. My dad was the source of the first ethnic slur aimed at me – Chief Blackfoot. I remember how I’d stand in the bathroom sink, holding onto his shoulder while he tried to scrub the mud from between my toes. 

8F37E4BD-6778-4DE6-9408-3ED570E9845BWe moved back to Chicago when I was seven. Mom was done with all things Iowa and dad’s venture into business was rather an abysmal failure. The house on 23rd Street was the last one our family shared. In Chicago we lived on the south side, on the third floor of an apartment building at 7746 South Cornell, right around the corner from my grandparents. The neighborhood was apartment-dense with a few duplexes tossed in between the talker buildings. There wasn’t much green. We had a little patch of dirt in front of our building. There was a ledge that you could sit on, just to the side of what was commonly referred to as the gangway. A true concrete jungle. Loads of kids poured out of those buildings for school and play. Our hide and seek games could include 20 children. We used a two block radius as our hiding boundary. We hid in basements and alleys, rather than behind shrubs or trees. We played kick the can in the alley a scant block from the Chicago Skyway, a heavily used road that in retrospect, seemed way too close for kid safety.572098C1-CC5B-47FC-86B3-DB6F3773A471

This was my city childhood. There was a vacant lot on my block where there were weeds and my new favorite insect, grasshoppers. I’d fasten my roller skates to my shoes, tighten them with a key and roll down to that lot to catch as many as I could. Then I’d sit on the ledge in front of our apartment building, putting them under a jar to watch them move about and spit their “tobacco juice.” Often I observed a group of them together.  Sometimes I’d dissect them with a small kitchen knife to see what their insides looked like. D43CE07E-DBE6-4699-8AD2-03D5D5454558.jpeg

Life went on. I was an urban girl. I rode the Jeffrey 5 bus and took the Illinois Central train with its wicker seats down to the Loop. Before college, I had a job downtown and a daily commute like so many others. Then I moved away to attend college at the big state school sprawled in the middle of the corn and bean fields of Illinois. 1F37357F-92C8-45E4-A606-A7F3A65057BA

Initially, I felt pretty alienated from my surroundings. I think the disparagement word of choice was “hick.” I was living among the hicks instead of the hip, urbane people of the city. But after my first two years, I got used to this town. The pace of life was slower and less hassled. After I left the dorms, I lived in houses converted to apartments. I had real yards. I got to have dogs.

I never went back to live in Chicago after my sophomore year. I stayed in Champaign-Urbana because I found that the easier pace suited my personality. My brain usually operated in overdrive and I came to realize that the relaxed surroundings and the ease of getting around was good for me.

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Our last rental house, above.

When Michael and I moved in  together in 1972, we spent the next 4 years sorting out who we were and trying to figure out if we were going to make a lifelong commitment to each other. We moved from place to place, sharing houses with roommates and eventually, living on our own. We figured out we were going to make it which surprised us both as we started out at only 20 and 22. We got married in 1976. And we started looking for a house to buy, a place to settle down, a place to get ready to build a family. 

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Me standing in front of our house in October, 1978, right after we moved in. The caption on the back says, “Our first house.” Who knew it would be our last house?

We found and bought our home in 1978. We didn’t have much money, but the house was broken into three apartments. We lived in the biggest one on the first floor and rented out the other two on the second floor to help with our mortgage payments. The interest rate in those days was 15 and 1/2 %. Sounds crazy now. It did then, too.

We moved in during the fall of 1978. The first months were spent reclaiming our space from years of rental neglect. We stripped wallpaper, painted and sanded floors. I’d started a new job that year and between these two life events, we were busy. Winter passed.9418B18B-918D-4EF7-993E-3412F3273B72

When spring came, we started to pay attention to the outside of the house. Constructed in 1893, it was easy to see that we had our work cut out for us. The building was one thing. But there was this enormous yard. So much dirt. More dirt than I’d ever been exposed to in my life. Dirt for Michael. Dirt for me. The size of our double lot was overwhelming. And overgrown. Essentially we’d bought a giant weed patch. The front yard was shielded from the street by a tangle of what were once honeysuckle bushes which had morphed into an impenetrable hodgepodge of volunteer trees. 

We had two dogs but no fence. We tackled the bushes and volunteer trees first. That was backbreaking work even for us late twenty somethings. But we got it done. Then it was time for the fence. Michael dug all the post holes and poured the concrete with the help of some good friends. He was big and strong enough to handle fencing sections on his own. These jobs took up our first summer or two. I cleared a little patch of dirt by the front porch, bordered it with bricks and planted petunias and marigolds. We were homeowners. Landed gentry. 

Years passed. In 1981, we had our first child. Another occupation,  coupled with our full time jobs and the always beckoning needs of the house and the yard. As we settled into our home, I felt the stirring in me of those long ago days in Sioux City, when I wanted to be outside all the time, exploring nature and getting dirty. And Michael, who loved food started thinking about vegetables and herbs that he could pluck from his own ground. 

Our soil was rich and dark. I realized that planting pretty annuals wasn’t going to be the right answer to turning our yard into a haven, a retreat that would soothe the soul after a long day. Michael confined his interests to the edibles and mowing the lawn. I always wanted to get rid of the lawn but I think his suburban upbringing made him feel that grass had a point. 

I took over the rest of the yard. My nickname was the human rototiller. I can’t describe what it was like to remove the amount of sod required to get me into my mud. I was sore, but I loved it. Getting to nothing but my own earth canvas was so satisfying. I watched all the worms wriggling back underground and knew I’d have good aeration for whatever I grew. But actually, I didn’t want to get too well-informed about what plants would do well and which flowers went best with which others. To me, that made gardening a job. I just wanted to enjoy the pleasure of mucking around and seeing what might happen. I called my gardening style hurling. Throw it in the ground and see what happens. 

Slowly the garden began to evolve. I didn’t like a manicured look but preferred a wilder affect. I began a garden journal almost immediately, pasting in photos of everything I planted, writing in when they went in the ground and when they disappeared. My historian side and my love of the dirt were good companions. I remember when I visited Monticello and saw Thomas Jefferson’s garden diaries. Mine aren’t that detailed but they work. And the inside joke of the spring in my family,  became my annual pronouncement that the forsythia was in bloom.AFD1EDEE-ABB7-4F0A-A5A8-9239FC75BCB4

Except for one stand of peonies and an old spruce tree, I’ve planted every shrub, every flower and every tree in my yard. Often my blooms are so big that people have said it feels like they’re Gullivers in Lilliput. 

I’ve sobbed as I planted away through the years for all kinds of reasons, from a bad Mother’s Day, to a fight with Michael, to a death in my family. I’ve dug blissfully away after buying a long-desired plant, after waking from a good night’s sleep and the warm embrace of my husband,  and I’ve experienced the flattery of having people come by my house with their cameras to photograph the results of my labor. 

I’ve coaxed butterflies, hummingbirds and bees into my space by dangling their favorite treats everywhere. I’ve created a habitat for birds so there is always song in the morning and throughout the day. My curiosity about certain insects has led me to read wonderful books which changed the way I see the world full of life in the dirt under my feet. 

When Michael died, I turned the bulk of his food garden into a refuge for pollinators, trying to help species which are endangered. So I’ve become a little more science-y than I was when I began my forays into the mud.

When I drive down my street and pull up to my driveway, I feel happy to see my garden, in all seasons. I’ve found a way to have interesting vestiges of my summer beauties that poke through the snow along with the evergreens. The connection between me and nature is profound. I find solace outside and an everlasting interest in the life I see around me. On my worst days, there is always a place to be, that for even a moment, relieved the pain and stress of grief and loneliness. 

The magic dirt is a gift to myself, the kind of gift you discover accidentally, in the course of daily life. This magic is free and asks for nothing. I’m grateful that I heed what’s right in front of me. I’m lucky to have the time to acknowledge what is often ignored by people when they’re too busy, too pressured or too distracted to pay attention. As long as I can dodder around, my dirt and all that goes with it will be my treasured companion.

 

 

 

The Layers

EFDDB421-5A14-467A-82F0-2444D61F2E80When I traveled to The Badlands almost a decade ago, I stood fascinated before the striated rocky hills, aware that each colored line, piled atop one another, was packed with millions of years of history. Oceans, forests, animals and insects were reduced to slivers of their former selves, weathered by age and time. When I’m out in new places I consistently look for rocks with those telltale stripes and their hidden secrets of former lives.

Those beautiful otherworldly landscapes came to mind recently as I’ve been probing my own layers. My layers are internal, unseen. But I’ve learned through experience that those layers exist, holding secrets and mysteries that I’ve concealed from myself. Much of what’s hidden has been done unconsciously. I think that all people paper over parts of their lives. Some of that happens because we simply can’t hold everything that’s happened to us in a constant state of awareness. Too much information, too much to handle all at once. But some of these layers seem to be a reflexive survival skill that helps us manage what’s often too hard to hold in our heads. Pain, stress, panic, despair. Those of us lucky enough to not be overwhelmed by the past, to stay present in real time, walk forward every day and remain functional. I’m one of those people. But I needed to start poking around in my layers so I could accomplish what I want to do. And I must say, messing around in what’s been pushed down by newer layers has been surprising and even unnerving.

Background: Merkel cell carcinoma (MCC) is a rare, aggressive skin cancer. Merkel cell carcinoma (MCC) is a rare disease as there are only approximately 1500 new cases annually in the United States, according the American Cancer Society.

I’ve been wanting to write a book about what it’s like to live through your partner being diagnosed with an orphan cancer, a cancer so rare that there isn’t much money or research directed at its treatment. I want to share our experience as spouses, as individuals, as patient and caregiver, because I think that people out there will be able to find some help and relief in learning about our journey. I think my direct style and my willingness to say what many people won’t, might benefit those going through the impossible range of thoughts and feelings that accompany the shocking transition from what was an average daily life to sudden chaos and ultimately, death.F1DC097F-EB6E-4AF2-BD58-C90CC43DDF7B

So far, I have a dedication, an introduction and a first chapter. But it’s been a confusing and rough slog, with the book going off in unexpected directions. I need to pause and reflect on what’s happening here. This isn’t a novel in which characters take on a life of their own, leading the author on a trip of discovery. This book is factual. I saved all of Michael’s medical records. I have all my journals which describe what happened to us. But I got stuck.13B9FA9D-C2F8-4766-AA7A-87FCC6CB53EE

Writing is a consistent part of my life. I have journals that go back 55 years. I can read myself growing from a child through my teens to early womanhood, adult life and my present. I always wanted to write a book but never dreamed that this story would be my topic. But life has other plans. I thought that I would start writing and refer to my carefully ordered notes which are chronological. But when I tried to start reviewing the material that marked the beginning of this trip, I backed away almost immediately. Although I remember in great detail how we learned about and began to deal with Michael’s cancer, I was too raw to look at anything that wasn’t objective. My entries about how I felt and how I perceived Michael’s feelings and my children’s feelings were beyond my ability to cope. That was several months ago. Instead of writing the book, I’ve been writing this blog, writing letters to Michael and writing more journal entries about my current life.

Some time has passed.  I decided I was ready to have another go at reading everything that happened since 2012. What stunning revelations. I recall that the morning Michael died, I texted his oncologist to let her know he was gone. After only about twenty minutes, she called to extend her condolences. But she also gave me a lecture about how in the next six months to a year, I was going to be at the highest risk for my own  death than I’d ever been in my life. She strictly instructed me to get past the funeral arrangements and then do nothing but sleep, eat and exercise for the foreseeable future. She’d seen me in my relentless advocacy for Michael, staying at the hospital with him for 32 days and nights, never going home, and endlessly tending to his needs on all levels. I was with him round the clock for months with little downtime or respite from what was happening to him, to us. And I wanted it that way. I’m a planner by nature, an anticipator. I’m always down the road, trying to imagine whatever might be needed, trying to avoid unnecessary problems. Most importantly, I’d learned long ago that I didn’t want to live with regrets, wondering if there was something I might’ve done that could’ve prevented something dreadful from happening. I knew what I was doing at the time. But I had no inkling what the magnitude of taking on Michael’s disease really was for me. It simply needed to happen.

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Since he’s been gone, I’ve been grieving, as is natural. In my mind, I’ve gone back to the 40 years we shared before we were struck by Merkel cell carcinoma. I hunger for the normal years when we worried about our kids, money, jobs, family problems. I remember how much fun we had and how we loved being with each other. The puzzle pieces that fit perfectly, the way we sank into each other’s comfort. And I remember how much we battled each other, we two opinionated characters who could quibble about anything. That’s the life I’ve been inhabiting since last May, after he died.

So it was shocking to me when I started reading the almost daily entries in my journals. The weeping. The arguing. The despair. The struggles about him not wanting to eat while I forcefully pushed him to keep at it. My moving forward at my usual breakneck pace while Michael edged slowly on, annoyed at my speed and resentful of me imposing my style on his. The desperate clutching of each other’s bodies as we tried to hang on to every second of life together. The years’ worth of trips that we squeezed into the moments when he was healthy enough to travel, trying to live the most compressed retirement we could grab before the cancer caught him again. And again. We tried hard to keep life as normal as we could with our kids and grandchildren. We pared down our social life so we could all be together as much as possible. On and on we went for over 5 years on the wild rhythms of life and death.

As I read, I remembered it all. But I’ve tried to seal off how awfully hard it really was, how debilitated I became as time passed and we both eroded from the strain. I read an entry in which my daughter called me a cockroach, that creature which has survived no matter what had happened to stomp it out. And I thought, is that really me? Is that how I was built, to crawl through fire and ash and emerge, battered but somehow intact on the other side?

As hard as being without my great love is, I am after all, still here. I didn’t die, like Michael’s doctor told me I might. I know I’m not the same person as I was before Merkel cell became part of my world. As many other events necessitated, I’ve altered and adapted to what the world has put in front of me. But in this brief period of time since Michael’s death, I didn’t know that I would rapidly build new layers inside of me, that softened the harsh reality of what we lived through, particularly during his final months. My joy in life is subdued. I still lean heavily on the bond we shared that grew and grew for our life together and flourished so much that it’s still alive inside me. Perhaps it’s the primary reason that I felt stunned at the distance I’ve put between me now and me then. That powerful relationship has trumped the agony of our cancer adventure. I find that what came before is the space I’ve been occupying and has changed my perception of the dark time.

A new layer added to the myriad levels of me. I’m grateful I have the documentary evidence to analyze myself, the way geologists study the physical world. Because my interior is as laden with complexity as those hills which have intrigued me. More territory to explore. Time to proceed to my next chapter.

By The Numbers

B18BC5C9-4231-443B-B526-917EA96B54DCThe other day, I got a call from a dear friend who was feeling broken hearted. She’d heard that a teenaged boy who’d spent his whole life struggling with neuroblastoma had finally succumbed to his cancer. This friend’s granddaughter had been diagnosed several years ago with an uncommon cancer, most frequently diagnosed in adult males. She was treated and has been in remission for several years. She, and the boy who died, had crossed paths through a community of parents whose children have life threatening illnesses. The families help support each other and are active in trying to help their kids experience enriched lives as they proceed through their grim treatments. Losing one child is a loss for all and a reminder of the fragility of life for everyone in the support group. The potential for living the same future death is never far from anyone’s minds.

114DB89D-AF47-49D0-AA0F-C34078B43BEEMy friend called me because she knows I’m experienced with the ups and downs of being with a loved one whose cancer ebbed and flowed, living from scan to scan, wondering always when the next doctor’s appointment would bring good news or bad. Living in a state of hyper-awareness is hard to describe. The edges of life have an eerie textural glow, as if they’re old celluloid movies which look unusually bright, but could suddenly ripple away and burn, erasing all images. No fabulous technicians are working in an archive to restore and preserve the one and only copy of the person you love.

0A9C8AED-320C-4D6F-A3F4-8945667FE301I tried to console her with my limited means of coping. I am not religious. I don’t believe in an afterlife, a heaven, or a better place than the world I occupy. I’ve always thought that a belief system like that would be an easier option than mine, one that could make the empty spaces feel less lonely. But I don’t. That route doesn’t work for me. I have lots of questions about what happens to the energy of a person who dies. What happens to their wavelengths that bounce into space, wavelengths that are now considered to be scientific realities? What’s a parallel universe? Why do people feel they’ve been visited by those who are no longer here? I imagine I will ponder those ideas for as long as I can think. I have no notion what answers may be discovered in what remains of my own life. These are my private, personal intellectual meanderings.  But my practical side is where I turn when confronted by the sadness of a friend who mourns a dead child and who fears for her own granddaughter and what may come down the road. I’ve figured out some approaches to the fear and the sadness. So I share what works for me.8D3A2E90-656F-42BD-8036-042F11590682

When I realized the limitations of what I could know in the future and what I could do beyond the present, I made some adjustments that help me. I know I can’t go back and have a redo of anything.I need to be alive in the moment, as often as is humanly possible. I can’t stop the inevitability of death, for myself, for anyone. So while I am in the now, I try to squeeze the absolute best experience that I can make out of even the smallest daily events. I told my friend that whatever she can give her granddaughter to enrich her current life is the best that she can do for her. That can range from sharing a sweet treat to a hug to a special  trip that will make unforgettable memories. Do it today. And don’t waste time in anticipatory grief which is a monster.

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When my husband was well, we squeezed little bits of magic into every day and night. Although nothing can fill the space left by his absence, I am comforted to know that while he was here, our awareness of the significance of “now” was a daily imperative. And there is great comfort in knowing that you did your very best at living under the constant presence of death.

Situations like the one of the little boy always remind me that my life isn’t tragic. Rather, it’s what average people can expect at some point in time. Tragedies are what happen to little kids who haven’t had the opportunity to experience the richness of life. Tragedies are the people who live in the wrong place, caught between political power struggles that can snuff them out in an instant. Tragedies are having to live starving, physically, emotionally and intellectually, accidents of genetics or circumstance. As I frequently remind myself, and anyone I can get to hear me, perspective is everything. That leads me to my current processing.

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When I was growing up, I didn’t like math much. After elementary school, algebra, geometry, trigonometry and beyond were not high on my list of pleasures. But oddly enough, my adult work life took me to a place where every day, I conquered what were the daunting mysteries that befuddled and frustrated me as a kid. And now, I find living by the numbers to be my most helpful skill in guiding myself through the challenges of my unanticipated widowhood and grief. So here they are.

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1) Today is the 406th day since Michael’s death. Somehow I’ve lived all those days when I wasn’t sure I could survive one. I still mostly feel and look like me, despite missing him constantly. I didn’t know I had 406 days left in me.

2) I started writing Michael letters about three weeks after he died. He was my best friend and confidante. Nothing felt real until I shared it with him. To date, I’ve written him 160 letters. For me, they’ve been marvelously cathartic. Some are whiny, some informative, some sexy, some pathetic and some angry. I highly recommend writing letters as a way of remembering your journey. At the end of my day, I feel relieved to pour my thoughts toward the person I most trusted in this world. I still wish he was here. But the notion of him with me is sustaining.

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3) I’ve also written 149 personal journal entries. I’ve been writing in journals all my life so this is nothing new. But they’ll provide an invaluable resource for my children and grandchildren after I’m gone. I’m hoping that I’m answering all the questions they’ll have about the past. Personally,  I don’t have those resources and have been left wondering about many parts of my family history for years. My mom and dad told me never to put anything in writing, always worried that somebody would get the goods on them and bring them harm. I blew off that idea long ago. My parents clearly weren’t historians.

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4) Since last June, I’ve gone swimming 326 times. I feel like I’ve gotten physically stronger. I was pretty spent after my years of caregiving. It’s good to know that you can still make a kind of comeback after being driven into the ground at an older age. After my knee surgery who knows how I’ll be?

5) I’ll admit that I don’t have an accurate count of how many hours I’ve spent being with or talking with my children and grandchildren. But I can say that even when I’m exhausted and feeling like a hermit, I pull myself out of the fatigue and do it anyway. Time is moving fast and I can’t ever get back what’s behind me. Do it now. FD40D9C0-F370-45A8-8B04-C21C82C8CF8D

6) I’ve played 9839 games of Words With Friends. I’ve tied in 24, lost 1202 and won the rest. I’m trying to keep my brain active. And I really love words.

7) My working hours in my garden average about 15 a week. I used to be able to crank out 8 hour days. Now my knees can’t keep up with my desire. But if I’m not working,  I sit in the garden and watch the sky, the insects and the animals who share my habitat. Those are some of my favorite hours.

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8) I read a book a minimum of one hour a day and usually more than that. For a long time during Michael’s illness, I had trouble concentrating on anything but articles and short blurbs. Books are a necessary component of my days. I’ve read 37 since Michael died. I’m working on upping that number. Reading the impossible news with astonishment every day has cut into my book time. Another challenge to becoming balanced.

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9) I listen to music at least 2 hours a day in a variety of formats. Music nourishes my soul. I starve without it.

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10) I’ve been to 32 movies in the theater since Michael died. I’m not sure how many I’ve watched at home. One day I’m going to try to make a list of all the movies I’ve seen in my life. I’m not sure I’ll have enough time to accomplish that.

11) I’ve been to two political demonstrations in the past year. I donate to two of my favorite organizations monthly and have made individual donations to worthy causes 13 times. I believe in staying politically active and as engaged as possible. I can’t get rolled over by the sideshow that is our current state of affairs. Doing my little piece is as necessary as breathing.

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So those are some of the things I’ve kept track of since my world changed forever. Maybe it’s a bit compulsive. Maybe it’s weird. I don’t really care. I’m just finding my way through all the shocks I took in a six year period of time. WhenI my brother, my mother and my husband died. Plus I experienced an estrangement from my sister and the death of two dogs. I’m doing my best to manage. Feels like it was a lot. But I know that other people have gone through worse and infinitely more horrifying times.

The counting helps me. More importantly, what I’m counting helps me. I hope my efforts give someone else ideas about handling their burdens. One, two, three….