I am presently on a lengthy road trip with my son. Our itinerary is ambitious – by the time we return home in sixteen days, we’ll have driven over 4000 miles. I’ve always loved being on the road. So much to see and experience. I feel like I’ve really challenged myself with this one. I’ve had one knee replacement surgery but the other one is ahead of me so hiking is a bit of a stretch. But I don’t want to squander my general good health at this age, and most certainly, not my mental fortitude which fires me to keep ticking items off my to do list. During this trip, we’re covering history and nature. My son has committed himself to making good memories with me which is a perfectly understandable plan after going through the unexpected loss of his dad two years ago. The two of us are well-suited to traveling together as we share similar musical taste and are both eager to learn as we roll along. In our typically dorky fashion, we’re listening to some Great Courses he selected, one on the greatest geological sites in the world and the other on mythology. We’re self-actualizing together. It’s pretty entertaining.
Yet on Day 4, we diverged from new shared experiences to one that I most especially planned into this trip. It all began with a book. When I was growing up, if I wasn’t outside playing and exploring, I almost always had a book in my hands. I was an indiscriminate reader – there was virtually nothing I wouldn’t read from long tomes to cereal boxes. At home, the big joke was that I read all the books on our one measly book shelf and when I was finished, I went back to the top shelf and started over. I had a tendency to pick a topic and read everything about it. I read about the presidents. I read biographies about athletes. I would find an author I liked and then read every book that person wrote. I started reading about the Civil War when I was about eleven and haven’t stopped since. When my son and I drove within the proverbial stone’s throw from Gettysburg, I found it hard to pass by. I’ve been there before. Whatever a religious experience is supposed to be, I think I had one on that battlefield. Images that I inferred from reading dozens of books about those days in July of 1863 seemed as real to me as if I’d been there at the time. That visit evoked some of the most powerful emotions I think you can get from just being in a place. I
When I was about 11, I came upon a book by Albert Payson Terhune called Lad: A Dog. We’d had a collie mix when I was a few years younger but we gave him up when we moved from Iowa to Chicago and an apartment. No dogs allowed. So reading about Lad’s life and adventures struck a chord in me. Terhune wrote other books about Bruce and Treve and Gray Dawn, but Lad and his extended family always were my favorite. I must have read that book a hundred times. I still have a copy on the shelf by my bed. One day, maybe a dozen years ago I was at work, tired of my current task and in need of a break. Lad’s imaginary home was called Sunnybank and I just decided to type the name into my computer to see what came up. I was totally floored to discover that the Lad and other collie books were not fiction. Terhune was a collie breeder who lived on a big swath of land in Wayne, New Jersey. A graduate of Columbia University, he was also a journalist and novelist. He started writing during the late 1800’s and continued for decades.
As I scrolled incredulously through the website, I found myself looking at photos of Lad and the other collies, their home, their lake, their special places. And the dogs were buried on the grounds of Terhune’s property. I was dumbfounded at first but that quickly turned into obsession. I needed to be at that place. I just couldn’t figure out a trip to New Jersey at that point in my life when I had so many responsibilities and so many other places to knock off my list. This trip was the right time for finally realizing my dream. Today, on the way to Cape May, my dream came true.
Terhune Memorial Park is a beautiful, serene place located on Lake Pompton in Wayne, New Jersey. The grounds are well-tended and the mature trees are alive with birds, chipmunks and squirrels. The house succumbed to fire some years ago but there is a museum in town which has artifacts from it and the dogs’ careers. I was interested in the graves. As we entered the park, my kid, a biologist and bird specialist pointed out several lifers, first time bird spotting for me. I quickly selected a favorite tree, a purple European beech with beautiful leaves and a gorgeous trunk.
While he pointed his binoculars at the sky, I walked from grave to grave, from stone bench to stone bench, recalling all the stories of the dogs’ lives, especially Lad’s. I surprised myself by dissolving in tears as I found myself racing back almost 60 years in time to those days when I began gobbling up those books. As I then reversed direction, moving back to the present, I realized how the books shaped the choices in my life. The majority of my dogs were collie mixes, most of whom looked exactly like pure collies.
My beloved Flash, my dog who I suspect was the dog of my life, looked just like Lad. My current dog Violet is a rescued purebred, my first one with papers and championships which mean nothing to me as I think she was abused. In the two years that I’ve had her she’s turned from a vacant alienated creature to a real dog. You can actually teach old ones new tricks. I think of Michael constantly teasing me about my “intellectual, psychological dogs,” who were always looking me in the eyes and trying to figure out what I needed. He was right. I wanted my dogs to be just like Lad whose gravestone reads: A Thoroughbred in Body and Soul. I wove those books into the fabric of me where they remained an influence in my life’s choices. I hope books can still do that for children, letting them build life visions from the inside out. Today was another religious experience for me. I’m glad that what came from reading can still stir such powerful feelings. And that a park by a lake can fill your soul, at least for awhile. I’m grateful to be that person.
A while ago, my son asked me if I had any regrets about my life. After Michael died, our whole family has spent time thinking and evaluating, pondering the big questions of life. I was actually surprised by my spontaneous answer. I was transported back to 1989, my year from hell. Michael was running for alderman that year after losing an election against the same opponent four years earlier by only two votes. I was his campaign manager both times and we were devastated at that first outcome and determined to not let it happen again. Shortly after his victory he developed a severely herniated disk which put him flat on his back for months. Almost immediately after that, both my parents were diagnosed with cancer within five weeks of each other. My mother had a radical mastectomy and my father was being treated for bladder cancer. Eventually, Michael’s back was so bad he required surgery. By this time, my mother was recovering as my father failed.
In the meantime, I had a full time job and two young children. I was doing my best Edith Bunker imitation, flying from one person to one place and then on to the next one. We were having our roof done that summer and were having classic contractor difficulties. A job that was supposed to take one week took six and left our house and yard disasterized. One day, a strong electrical storm came through town and an old oak tree on our parkway was struck and fell on the new roof. The symbolism of the sky falling wasn’t lost on me. Eventually Michael had the back surgery. A brief month later my father died.
At this point in time Michael was a partner in a music store business which had a few locations and was doing well. This was before the big box stores showed up, selling CD’s as loss leaders and undercutting the independent record businesses. The Record Service also predated the days of downloading music from the internet. That fall there was a big party to celebrate its 20th anniversary in business. The store never made us much personal money, but it came with a lot of perks. The record companies owned box seats at Wrigley Field, Comiskey Park and the Chicago Stadium. We saw lots of terrific games during the fabulous days of the Chicago Bulls of Michael Jordan and Scottie Pippen fame. We had preferred parking passes and were living like royalty. In addition to those privileges, we got free concert tickets to every group imaginable. The tickets often came with backstage passes.
Can you imagine the fun of hanging out and chatting with people like Tina Turner, The Commodores, Crosby, Stills and Nash, Ben Harper and Billy Joel? There were many more. My love for music had started early.
When I was eleven I had a pen pal from Liverpool, knew all about the Beatles and saw them at the Chicago Amphitheater when I was thirteen years old. At 10 o’clock every evening, I lay in bed with my little transistor radio to hear Dick Biondi, a DJ on WLS radio, who would announce the top three songs according to call-in listeners. That was just the beginning.
I saw the Supremes, the Temptations and James Brown. I saw The Rolling Stones multiple times along with The Beach Boys. When Michael and I got together, the list grew longer. Before he died, he compiled the names of every band we saw and met, and were stunned to realize we’d seen over 300 groups. I never got around to buying him the t-shirt which said, “we might not have any money but we’ve seen all the best bands.” We had an absolutely wonderful time.
So right around the Record Service’s 20th anniversary bash, the rep from Capitol Records gave Michael two tickets to see Paul McCartney who was touring and would be playing in Chicago. Paul was my favorite Beatle. I admired John’s intellect, George’s sweetness and Ringo’s humble style, but Paul was my lifetime crush. At that time however, I really didn’t feel comfortable about going to attend a rock concert. My dad had just died and I felt a moral responsibility to stay close to my mother. So I declined and Michael stayed home with me. I didn’t know then what I know now, that life is uncertain every day and that you should always take advantage of wonderful opportunities while you have the chance. When we were dealing with Michael’s cancer we got better and better at doing that and managed to squeeze some fabulous times in between the hard ones. I’ve been practicing that skill since Michael died. I’ve traveled to long desired destinations on my own and seen so much beauty. I took a dream train ride across the country and am getting ready to do it again to another pined for place.
I finally got to see Roger Federer in the flesh after watching him on television for 20 years. Every time I tick a dream off my list I feel like I’m honoring Michael who left this life with so many wishes on his to-do list. So when my kid asked me about regrets the first thing out of my mouth was that I wished I’d seen Paul McCartney in 1989 when I had the chance. My staying home didn’t really change anything for anyone. I just missed a good time and a memorable experience. Shortly after that conversation, I received an email with two tickets to his latest concert tour in Ft. Wayne, Indiana. My kids decided to correct that regret.
I was stunned and excited although I thought Ft. Wayne might be a strange venue. The concert was taking place at the Allen County War Memorial Coliseum which sounded odd. But it turned out to be a lovely building, clean and new with a 13,000 person capacity which meant there really wasn’t a bad seat in the house. The professionalism of Paul’s team was impressive. There were lights, lasers and fireworks. Paul’s image was projected onto huge screens so everyone could feel close to him. There was a movie screen in the center of the stage which scrolled images appropriate for every song.
And the music selection was fabulous from the early Beatles catalogue to Paul’s early solo albums to Wings and his most recent music release, Egypt Station. The crowd was electric with excitement and was demographically diverse, from race to age. It’s not every day that you get to see a genuine icon in the flesh. Which brings me to the more substantive feelings evoked by watching this soon-to-be 77 year old man handle a challenging 3 hour performance. First, I recognized that this person does not need to be doing this. He’s already reached the pinnacles so many people could never imagine. He’s wealthy, successful, world-renowned and well-loved. He’s performing because he wants to and maybe needs to, as his passion seems undiminished and joyous. Paul presents as a grownup. He’s comfortable talking to a huge crowd and doesn’t pretend he’s a kid. His banter with the audience touches on his early life as a young performer. But what left the strongest impression on me was that he was clearly using his platform to share painful acquired life lessons in an unembarrassed, open way that was powerfully moving.
First, he spoke reflectively about a key life lesson which was that if you want to tell someone how you feel, you should do it now. He spoke about his relationship with John and how males of their age rarely expressed love for each other. When John was killed, he was haunted by never having said aloud what had been true for their entire lives. He played a song he wrote about it, which was a somewhat sheepish confession of his emotions that he felt might get a teasing response from his old friend. It was truly simple on an acoustic guitar and one that brought many tears to the audience.
Then the screen switched over to George images, who he sweetly referred to as Georgie. He brought out a mandolin that George had given him as a gift and said that the best way to honor his memory was by singing one of his best songs, Something. Just Paul with this little instrument, doing his touching rendition of a George classic.
He played a lovely song for his current wife Nancy. When he went back to his Band on the Run tunes, the screen was filled of images of him with his babies, taken by his wife Linda, the photographer he met and married in his 20’s. Their thirty year marriage ended with her too early death from breast cancer and as the pictures of he and his kids went by, they faded to pictures of the band in which they played together, her body leaning into his as they posed for a photo shoot which eventually cut away and faded.
And finally he talked about how civil rights unrest and the tragedy of racism in this country inspired him to write Blackbird, a song known by millions of people around the world. Hearing a reflective person share so freely truly resonated with me. Both my son and I felt it was a transcendent experience. I’ve been thinking about it for days and I’m hard put, even after all the live music I’ve been so lucky to witness, to think of any concert that was better than this one. So much more than songs. That regret I felt for having opted out of that show 30 years ago is erased. More importantly, I actually am thinking it turned out to be a really great thing in the long run. Regrets can become pinnacles as life moves along in its random ways. I still love Paul.
This morning my cockatiel Daisy died. I’ve been worried about her for weeks. She’d been falling off her perch and landing on the bottom of her cage. Her right wing hadn’t worked very well for the past couple of years. When I’d let her out to fly around, she’d soar upward and then wind up drifting quickly to the floor. Eventually I’d just pick her up and put her back in the cage after she’d walked around a bit. And most recently, I didn’t take her out very often. She was definitely a geriatric bird although I have no idea how old Daisy really was – she’d been found outside by a friend who was a cockatiel lover.
Our first cocktail, Lily Peaches, was also a found bird. I think well-meaning owners bring their tropical birds outside in summer for a taste of the wild life and wind up forgetting to lock their cage doors. So off they go. Someone who worked for my husband found Lily walking down the street. That person couldn’t afford a cage big enough for her, and as my husband remembered that I’d grown up loving a family cockatiel named “X,” he surprised me with her one day. She was a beautiful yellow bird with bright orange marks by her ears. Affectionate and loving, she spent most of her time out of her cage, with free run – er, flight of our upstairs. Our collie, Flash, a big sweet boy, was completely intimidated by plucky Lily.
She’d land on his back or stroll up to him as he lay on the floor. Flash’s gentle temperament would never allow for an attack on any other animal. Because he wasn’t aggressive, our guard was down when a neighbor dog came over for a doggie play date. The two ran upstairs and though we figured things out fast, it was too late for Lily who met her ignominious death in the jaws of a predator. Oh, the innocence of the unsuspecting. What a dreadful experience. Flash had completely disarmed Lily.
That was a day when I realized I was really an adult because I didn’t immediately hate the owners of the Husky who was just being its natural self.
Sometimes it’s the unexpected moments that make you look at where you are in this life. Then along came Daisy. A friend who had his own cockatiel had found her wandering outside. When he tried to introduce her to his own resident bird, that one had a powerful negative reaction to the invader. He knew we were partial to birds so all was good when he offered her to us. The problem with these rescued animals is that you have no idea how old they are and what their previous life experiences were.
I always figured that Daisy had a male owner. She clearly preferred Michael’s company to mine. When she heard him come home after work, she’d trumpet away until he came to greet her. While he was teaching, he planned his classes upstairs every night in his study which was adjacent to the room where Daisy lived. Invariably, she’d emerge from her cage and fly to Michael’s shoulder as he worked away. His shirt shoulders were often covered in bird droppings but they both liked the companionship.
Eventually Michael, a guy who never met a piece of wood he didn’t like, built her perches from branches that he mounted and kept on his desk. When she wasn’t sitting on him, she preened herself on those. Although it’s likely purely coincidental, periodically she poofed her feathers out while sitting on him and laid eggs. He’d find them on himself or right below his chair. Did she think he was her mate? Hard to say. Pet life is so interesting.
After Michael died, Daisy accepted me as her person. She even got to the point when she laid eggs around me. Living with birds stemmed back to my childhood. There was the cockatiel “X” and a bunch of parakeets, Charlie, Little Man and Candy, along with a lovebird named Pearl. Our daughter got her first budgie, Charlotte, when she was seven. She walked around with that bird clutched in her hand and often at bedtime, we’d see movement under her covers as she tried to sneak an illicit sleepover with her little companion. My mom had a gorgeous parakeet after my dad died. Some people find them uninteresting, but my family had the avian bug. My grandsons, ages five and eight, got their first bird last year.
So what about these pets? As I buried Daisy today in our yard which is filled with the remains of hamsters, guinea pigs, birds and dog ashes, I am amazed that I’ve continued to bring home animals who will ultimately break my heart. As I watched Daisy die right in front of me, I was glad to utter words of comfort to her as her life ebbed away. But at the same time, I felt exhausted and sad. This was not my first rodeo. Violet, the dog I adopted after Michael’s death, is now ten and I have no notion of how long she’ll be around. Lately I’ve been thinking that I’m reaching the end of my pet-owning life. After all the people deaths I’ve endured, I don’t know how many more of these animal ones I can manage. Our birds lived with us for a combined thirty years, along with the canines, fish and little mammals who were always around. Each life brought into the house is another emotional commitment. They limit the freedom of being able to pick up and travel. They need attention and mindfulness, always. I’ve spent my whole life with animals. I even snuck them into my dorm when I was in college. I’m wondering if that part of my life needs to stop, after Violet makes her exit. Will I be physically able to give an animal what it needs and deserves as I age? Should I be more selfish with my time as what’s ahead for me is certainly less than what’s behind me? Being responsible for living things is a choice. Am I ready to change? Because watching death over and over is for the birds. Stay tuned.
Now comes the second anniversary of Michael’s death. When he died, I stood at the edge of my new life with no real plan. I was whatever comes after utter mental, emotional and physical fatigue. I gave everything I had to him as he confusedly and begrudgingly made his exit from life. In sports terms, I left it all on the floor. I am so glad I did that. I feel good about the way I was with him as he faced his death. I know that makes me lucky. In my support group that I attended after he died, I learned that these things don’t often turn out well and that survivors are haunted by some of their choices and decisions during the waiting time. Through the years of riding the cancer rollercoaster, I remember thinking that what I was experiencing needed to be shared with others who would face this road one day. I wanted to write a book about everything we’d gone through and give suggestions for how to navigate the medical parts, the logistical parts, the family parts, the emotional parts. I have everything I need to do this. I have all of Michael’s medical records. Scans, reports, lab results and photos of his tumors. I have every email exchange between me and researchers across the country. I have lasting relationships that I made with nurses and doctors during the course of his disease who would help enlighten patients and their families. What I don’t have is the book. Instead, during these two years, I’ve been trying to find my space, writing this blog and still sharing the lifetime of conversation I had with Michael via letters to him that now number in the hundreds. I don’t know if I’ll ever write that book. But I’ve inadvertently written other books which I’d like to share and I’ve learned to trust my instincts to lead me where I’m supposed to go. And so on this second anniversary, I need to write about the waiting time. For me, that was the time when all efforts to save Michael’s life were over because there was no way to restore real quality to his existence. What remained was the watching, the wondering, the wishing, the confusion and the teetering between crazy hope and profound resignation. Because my need to purge myself of the weight of my ever-moving thoughts, I can look to my journals for exactly what I was feeling and thinking in those days before his death, when there was nothing left to do but the smallest comforts, the whispers of love, the sensation of warm skin to skin, soon to grow cold. I’ve re-read them for the first time today. I’ve gotten strong enough to express those harrowing memories to the outside world now. Perhaps they’re not as instructive as I’d hoped they’d be but still, they shine a light on what it feels like to be at the edge of goodbye and finally, the end. So here are my notes from those last days.
May 16, 2017
Although overwhelmed by the magnitude of what’s ahead and very frightened, I feel a sense of relief that I’ve made the decision to sign Michael up for hospice. I wish he or the doctor had chosen instead of me. But I suppose I always knew it would be me. How will I re-enter the world? Hello, everyone. I decided to give over my whole life to my primary relationship for the past 5+ years to squeeze whatever I could from our time. Now I’m alone. Any room for me? All the turns in this Merkel cell road. If Michael had taken my earlier derm appointment in March 2012 instead of April. If Dr. L. had been been able to treat him with chemo instead of being outvoted by the team. If they’d scanned him every three months. If he’d gotten into the Avelumab trial. If he’d been able to stay on Keytruda. If, if and if. I have to let it all go. Because it doesn’t matter any more.
May 17, 2017
It’s not every day that you sign your husband up for hospice. No more doctor’s appointments. No ER. No more bloodwork. Just waiting and watching for death to come. I told him that no matter what happened it would be ok. He said, no it won’t.
May 18, 2017
So admitting Michael to hospice was the worst. But I need to think more clearly and get as much help as I can. He’s still getting in and out of bed but he’s confused and handling his private needs are a nightmare. He is still very big and my body aches trying to hold him up. He’s confused about where the bathroom is and I’m afraid to leave him for a second. I am so torn up by all this but I wish it would end tomorrow. It’s awful for everyone.
May 19, 2017
Omigod it finally happened. He fell in the bathroom. I’d held his hand to get him there, he stepped in and maybe he got dizzy. Whatever it was, he fell and lay splayed out in the shower on his back. Without my son here, I’d never have been able to get him up. I pulled while he pushed. I hope nothing is broken. I hope he didn’t hit his head. Terror-fear-heartbreak. The hospice nurse came and Michael told her he still had a lot he wanted to do. But he can’t do anything. I’m just watching him slide away. Tonight he gave his pocket watch to our oldest grandson and told him that he loved him. Next, he said our son was nice and smart, and that our daughter had such spirit, and that I was smart and was his girl. Little nuggets to savor later. Dr. Z. called and gave me her cell phone number. She’s worried about me. I know how much harder things will get. I’m very afraid. But I’m not willing to put him in a nursing home. Not yet.
May 20, 2017
I think of how many years I’ve thought of Monet painting his wife’s death face. And now here I sit, looking at what will soon be Michael’s. Both images are seared into my brain. Until my brain will one day, blessedly, let go.
12:50 pm – Michael said he didn’t feel so good. I explained that he hadn’t been eating or drinking much. I offered him Boost or Gatorade which he refused. I asked him if he knew what was happening. He said, I guess I’m dying. I said, yes, I guess so too. And I told him there was nothing I could do to stop it. He’s cold and has pulled the covers over his face.
3:32 pm – He’s only had a few sips of water today. I asked him if he was letting go. He angrily said no, are you kidding me? That’s the most fucked up thing I’ve ever heard. And he went back to sleep. He’ll never give in. When will the rough breathing begin? When should I start the drugs?
7:30 pm – Today was so bizarre. After a day of no eating, little drinking and an upset stomach, he suddenly said, I don’t think I’ve eaten anything today. I got him a Boost and he drank part of it and asked for the kids. They both were near and he hugged and kissed them. We talked and he said he didn’t particularly feel like dying. Everyone cried. After awhile he got tired and the kids left. Twice more he talked about eating but he couldn’t do it. What peculiar manifestations. No memory, some memory. Lack of balance but still fast reflexes. Hand tremors. What is coming? We played music and sang. I think everyone was happy for a few moments. What will my night bring? I need sleep.
May 21, 2017
Another unpredictable night. Michael asked about meals but can’t eat except for a few bites of jello. We talked and he had a lucid spell in which he seemed to be able to process that he was going to die. I full expect that recognition to be gone at any point. He says he’s not in pain. I can’t figure out when to pull the trigger on the medications. It feels like I’d be killing him. I know he has no quality of life. But every time that spirit of his pops through, I hesitate. I know he’ll be that way until the end. I guess I’ll know when it’s the right moment.
May 22, 2017
Michael had an awful coughing jag which he said really hurt so I gave him morphine. He’s barely moved since. My recliner is right next to the hospital bed, so I hold his hand and doze. The kids are around a lot. I went into the dining room for a time to talk about all that needs to be done when Michael dies. I started organizing for this years ago but it feels unreal. My daughter went home to see her kids and after she left, Michael reached up and stroked my face. That is a touch reserved for him. I’m blown out with fatigue. I rest beside him. The hospice nurse came. So far, his vitals are still normal.
We have a ways to go. He has terrible stomach issues. I’m trying to think of my chores but I find myself thinking of Faulkner’s As I Lay Dying. Michael lies there in the bed. So unreal. The rugged stuff is still ahead. Who knows what the cancer is doing in his brain?
May 24, 2017
It’s hard to describe the past 24 hours. Michael went from some communication and an attempt to drink to shutting down completely. Twice in the night he could barely make it to the bathroom. After the second time, I gave him drugs so he could sleep. I’ll remember him reaching for my hand, touching my face and saying my girl. This is my nightmare. Am I killing him? The hospice nurse says his agitation at approaching death doesn’t feel good to him, so I’m helping him. I’ll struggle with the ethical and moral considerations of this for a long time. When people are in hospitals and nursing homes, the family doesn’t do this. But I’ve been through it before with my dad. I’ve done all the practical tasks. I moisten his lips. I’ve contacted the funeral home. Ever organized. But this is really going to end. My boy is lying in bed right in front of me and he is going to disappear. The future is formless, shapeless. My boy. Going to ash. Will he die today, on my birthday? My family is with me, my sister coming in with all her memories from the old days of my red-headed hippie boy who was sweet as sugar. My friend drops off a fabulous cake that’s so huge no one could eat it all. There is guitar playing and crying and me watching the clock, willing the hands forward. I’m kaleidoscopic.
May 25, 2017
Michael’s breathing is slowing down. Periodically he makes dreadful sounds. Is it fear? Discomfort? Dreams? He seems responsive to my voice. I know he doesn’t want to let go. I can still feel resistance coming from him. Stubborn. Unvanquished. But he’s done. And he can’t stop it. It is awesome and horrifying to watch. How I’ll miss the comfort of his body. The most relaxing place I ever lived. The hospice nurse called this morning. She’s surprised he’s still here. He was still well-nourished except for the last few days. Maybe that’s part of it. He has a catheter now and his output is diminishing. I am calm and loving and hysterical and shrieking inside. I want to let him go but I dread it and I can’t bear that he will be taken from our home in a body bag. And I’ll never see him again. The memories will have to be enough. But they’re never enough. The health care professionals in our life tell me they admire the way I’ve taken care of him. Dr. B. from Michigan signs his emails to me, with admiration. What the fuck? The world must be full of awful people who show up in their jobs. Ugh.
I wonder if I’ll have a nervous breakdown when Michael is really gone from our home? I’m afraid the body bag won’t be long enough for his tall frame. Drip-drop go the morphine and the Lorazepam. I won’t let the kids administer any of it. Not like I had to do with my dad. Don’t want them to carry the burden.
May 27, 2017
He just hasn’t let go. When I try to give meds and clean his mouth he bites down. You can feel primal resistance. The kids are stunned. We are operating on his schedule. I always moved too fast for him. I remember him saying, Renee would you mind removing your feet from my back? He has no idea how we’re all suffering right now. Twice today we thought he was dying. This is torturous.
May 28, 2017
The kids are asleep in the living room. At least I hope they are. Michael’s body is jerking with each breath. I give more of the Loazepam. I know it’s a matter of hours. I’ve known this was coming since his diagnosis on January 31st. I’ve been preparing. But listening to him heave next to me is so horribly painful. His heart needs to give out. And when it does I have to claw my way through the hospice people coming and the funeral home people taking him away. He will be ashes. My pain is limitless. I haven’t forgotten any of our bad stuff. But I remember all of the good.
My best friend. My considerate and exciting lover. My safe place. Those big shoulders and those arms wrapped around me for 46 years. My hand holder in the movies. The one who knows me better than anyone else ever did. The one who never judged me. All of it leaving with each gasp, each twitch beside me. The emptiness ahead. My starving body missing his touch. I’m going to try sleeping. I’m holding his hand. I could wake up to the wasteland.
I wake. He is still breathing. Just now I thought he tried to verbalize something. Oh what is happening in there? I murmur to him that I love him.
He is gone.
I am a widow. I am no longer a caregiver. For the first time since 1989 when my dad died, leaving me to take care of my mom.
I was able to kiss his cold lips and face. He looked peaceful, almost smiling. No more of this. I’m supposed to survive. My son is asleep in my lap. My daughter stands on the front porch breathing fresh air. We told the grandkids. I tried to give G. his stuffed duck that Michael had in his bed. He told me to keep it. He said he’d had his turn, Michael had his turn and now it’s my turn. So painfully sweet.
So that was what happened two years ago. I am still here. I’m still passionately in love with Michael and I’m building the best life I can. Maybe people who read this will find hope in that. The duck is in my bed every night. The last word I utter before I go to sleep is Michael’s name. It works for me.
So I’m putting 67 behind me. That age marked my first full year without Michael after beginning our amazing life together in 1971. As you can see by my t-shirt, I’m still keeping us close to me. I especially hated this age as it was the same death year shared by my father, Michael and a well-loved brother-in-law. I’ve had a bad taste in my mouth about it on and off during the whole year. One of those irrational things you’ve just got to accept because there it is. I’ve just re-published last year’s birthday blog. The advantage of being a writer is that you can look back and see what your recent journeys look like from a different vantage point. Just like the disadvantage of being a writer means you can look back and find some cringe-worthy moments you’d rather forget.
I have to say that for the most part, my last birthday blog feels pretty consistent with what I feel today. Then I was evaluating my life as a single person and trying to get used to a new way of doing things. What I’ve recognized in the past year has built on that beginning. And this year has been more about me defining myself in a way so different from the way I spent most of my adult life. I don’t know if there’s really such a thing as a born caregiver. If it exists, I think I am one. I’ve always leaned in the direction of putting other people’s needs before my own. I don’t really have any judgment about it. It’s natural. The circumstances of my life leant themselves to my inclinations. I’m not heroic and I’m not a martyr. I’m just this random person who looks to benefit others before myself. I used to feel a real imbalance in that. When I was young, I wanted to be treated in the same way I treated others. I was mostly disappointed. Eventually I realized that I needed to do who I was and that was all that really mattered. When I walk away from something I’m more concerned that I did what I needed to do, rather than worry about what anyone else did in return. I’m good with that path. My son, the biologist, called me maladaptive. I just think that’s funny.
When Michael took his last turn for the worse, I took my caregiving to a whole new level. When he wound up spending 32 days in the hospital I moved in with him. It wasn’t even a question to me. He needed an advocate and that was me.I think I went home once to get some laundry. Other than that, I was a resident. And I got to bring him home. That was what he wanted. I don’t think he’d have been able to get out of there without me. His prognosis when he was admitted was on average, 4 weeks. Michael lived for 17 weeks. He wanted another good day. I helped him get it.
I remember thinking that my intellect had transcended my emotions and my body. He wanted to be alive and I was going to do what I could to help him until there was nothing left to do. I didn’t regret then, nor do I now regret any of what I did. Although, truthfully, I have no clue how I survived that intense time in our home with the weight of 24/a/day care, terror, grief and fatigue and the knowledge that it all would end. The morning Michael died, I texted his doctor to tell her. Half an hour later, she called me to say I was now at the highest risk for death in my life. She said I couldn’t do anything but eat, sleep and exercise. I heard her and was taken aback but I didn’t really get it. Life moves on. I had to let go of one way and find another.
So here I am, almost 2 years later. Another birthday for me, which I refer to as the result of my sturdy peasant stock. I am alive today. In the last year, I’ve been working on putting myself first more. There is no person for whom I’m directly responsible all the time. It’s very weird. But I’ve plunged in and tried to push myself out of my comfort zone. I’m giving myself experiences. I took a family trip with my daughter and her crew. I was nervous about feeling like a burden but everything was actually great.
We went to North Carolina and were in the beautiful, if dripping wet, Blue Ridge mountains. I got to see Chihuly glass installations at the Biltmore. There’s a terrific bookstore in Asheville. I liked driving.
I gave myself the gift of seeing my beloved Roger Federer in the flesh. I went to the Western-Southern Open in Cincinnati by myself and had a glorious 6 days. Then I saw him again at the Laver Cup which just happened to be in Chicago the weekend of my 50th high school reunion. I played a critical role in planning it although I don’t know exactly how that fell into my purview. A successful and fascinating experience.
Then I had my first real surgery, a knee replacement which was long overdue. I prepared hard for it and did well. The next one is coming up in July.
I visited family and friends. I went to see relatives in Chicago and took a two week trip to Florida to see old dear friends. I was scared of that, being the odd person out, but it turned out to be a wonderful trip.
I had the pleasure of seeing live music. I went to see John Prine, Jeff Tweedy and Pete Yorn. In two weeks I’ll see Paul McCartney for the first time since 1964. I took classes. I learned about women in jazz, honey and alcohol and molecular biology. My blog is out in the world enough so that I’ve been asked to write a special one for my local park district. I’ve joined a book club and am trying to make sure I stay connected to a community of people rather than being a hermit in my house.
I’ve studied a lot of art this year and have been sharing a painting a day on social media. The world can be so ugly. I’m trying to spread some beauty.
I’m taking a road trip with my son to the east coast in a few weeks and for the third time in three years, I’m trying to go to Glacier National Park which was on fire for my first two tries. I board a train at the end of June, hoping that a different season might bring me luck. My oldest friend says I’m “living large.” I don’t know about that. I’m thinking always about trying to be in life at its fullest. That’s the big lesson that I took from the cancer years with Michael. I also tell myself that it’s ok to be lazy sometimes after working for over 40 years. That’s a work in progress. I find doing nothing to be a real challenge.
I’m trying to be still, at least for brief moments to savor the little things. My garden, the birds in my yard, the clouds overhead. I remain in love with my dead husband. I have no explanations for the way I feel and I don’t care. When he surges up in me or around me I have no idea how that happens. I wish I could make it happen every day but it doesn’t. He’s been here with me all day today although I can’t explain why. I find it oddly wonderful that when I see his photos, I still get hot and bothered.
If I ever figure any of this out, I’ll share with anyone who reads this stuff. So happy 68th birthday to me. I don’t know what the next few days might bring, much less a full year. If I’m still around next time, I’ll let you know what happened.
The other night, my son and I had dinner with old friends, the parents of a guy he’s been close with since day care. We know a lot about each other’s families. During our evening’s wide-ranging conversation, we spoke frequently about Michael, who remains relevant and important in my daily life, despite being gone for almost two years now. At one point my son looked at me and said, “you know, mom, I think the way you deal with death and your willingness to still include dad’s presence in discussions is not normal – it’s a little unusual.”
I suppose that’s fair. The truth is, I think that’s in keeping with lots of conversations I have about lots of topics. I have a tendency to say aloud what I think other people might be thinking. But while I verbalize, others choose to tamp down the urge to share those perhaps off-limits ideas with others. I’ve never understood why there seem to be conversational rules and I’ve never personally subscribed to that notion. While I can recognize that I was a little more judicious about what I uttered when I was a kid, once I reached my late teens, I got done with repressing myself. My default style is to go all in with my emotions, my thoughts and my intellect. I always felt like cutting to the chase was the most efficient way to face life. My first serious adult boyfriend told me he had lots of trouble dealing with my “all or nothing” behavior. I wanted to talk about everything, not holding back, not sweeping anything under the proverbial rug. I’ve chosen to live that way, outside the lines.
I like to be out in the open about almost everything. The secrets I keep are generally associated with the choices of other people in my life. I don’t expect everyone to feel like me or do as I do. I just feel more relaxed outside those invisible lines than in them. I always thought that stuffing down what you really felt would make you sick. Maybe that’s because my mind is so loaded with thoughts and images that it’s easier to just put them out there rather than sinking beneath the weight of them. Additionally, putting it all in the table is a release from constant self-monitoring. It works for me, although I’m keenly aware that I tend to see a lot of raised eyebrows, as I expound on anything and everything.
After a time, most people get used to me. Some even choose to participate with me in my incessant pondering, dissecting and sharing my stream of thoughts. For years now, each morning I receive an email from a dictionary service which provides a “word of the day” with a concise definition. For the most part, I know the words, a testament to a lifetime of reading. But every so often one comes along that I’ve never seen and that has particular relevance. There was a new one a couple of days ago – “hypermnesia.” The definition started out reasonably enough and then, specifically for me, devolved into a little bit bizarre. The description was: “abnormally sharp memory or vivid recall, seen in certain mental disorders.” I know have an abnormally sharp memory – I’m not so sure about certain mental disorders. I suppose anything that doesn’t fit between the lines could be categorized as a mental disorder. I don’t think I’m abnormal. I’m just not usual. What I do know about my powerful memory is that it’s a classic gift/curse deal. Being able to remember so many life events in vibrant technicolor with Dolby sound is kind of cool, but sometimes not.
I remember being in the kitchen at our duplex on 17th Street in Sioux City, Iowa when I was between two and three years old. I was low to the ground back then. Sunlight was coming through the window and I could see floating dust particles lit up by the sunlight. I can also see my mom, wiping up drops of blood from the floor, dropped by Trixie, our blonde cocker spaniel who was in heat. My mom put a diaper on her. I thought that was a marvelous thing to do. By the time I was five, Trixie was gone because she’d bitten me in my armpit.
We’d moved to 101 E. 23rd Street and on to King, the wonderful collie. I remember a lot from that part of my life. One day at Hunt School at recess time, kids were teasing me and calling me fatty. I don’t think I was fat back then, but I know was big for my age.
I climbed to the top of the metal jungle gym on the playground so I could think. I thought calling someone names based on appearance was a terrible thing to do. A person couldn’t do much to change what she looked like. I decided that I would never use insults like that in my life, that I would find other ways to fight back that had more meaning. I’ve never forgotten that and I still feel the same way today. When I think of the people who infuriate me the most, I never resort to a physical insult. The whole Trump/orange gambit leaves me cold. The only thing physical that I say about him has to do with the haughty, entitled expression on his face. A different matter altogether than his corporeal being. There are so many other intellectual and psychological issues about him. Why call him a name based on his looks when there’s so much more material available?
But back to the memory issues. Once, when my husband and I were waiting for an elevator at our local performing arts center, a man and his wife walked up to wait along with us. As soon as I saw him, I remembered seeing a photo of him in our local newspaper. He was a pretty famous scientist, and at one point, my son spent time working in his lab. I’d never met him but was so certain of who he was that I introduced myself and asked if he was who I thought he was. He said yes and then asked me how I’d identified him. When I told him, he thought that was unusual and my husband piped up and said, “Well if you think that’s weird, you can guess how it is when she says – do you remember that time 26 years ago when you made that annoying remark and you were wearing that blue plaid shirt and those torn jeans?” So yeah.
Sometimes my memory can be a source of good times and others, not so much. Right now I’m going through a bunch of memory-inducing events that occupy May and June and which are emotionally challenging for me. Each one comes with a blast of remembered faces, touches, words, clothes and places. The visuals are powerful. I remember numbers, colors, conversations and dreams. May 14th was my dear old friend Fern’s birthday. She’s been dead almost 31 years now. The time doesn’t matter. I can still feel her and see her.
When we were kids her address was 8138 S. Jeffrey. Her first dog was named Frisky and her second was named Lee, an abbreviation of Kai Lee Yung Su, emperor of Eli. I can see her piano with the music for Clair de Lune opened on the music desk. The piano was blond wood. I can see the breadbox on the counter in her kitchen. I remember that her mother Sarah’s nickname was “bench,” a take-off of her last name. I can see her father Nate and smell his awful cigars.
I can see her ridiculous glasses with rhinestones on the frames and her very nervous fingers which were never still. I can remember my teacher in my second and third grade class, accidentally stapling her hand and saying, “by cracky.” I remember my classrooms and my school projects and virtually all my teachers.
I remember learning traditional American tunes in Mr. Hartl’s class, who often played his violin for us. Miss McCauley was another music teacher who had a hearing problem and kids were merciless teasers about that in her class.
I can smell the perfume of my eighth grade English teacher, Helen Brennan, and see the white crescents of her fingernails when she leaned over me to touch my copy of Pitcairn’s Island, part of the Mutiny on the Bounty trilogy. I remember writing my Chicago book that year for Miss Potter, a teacher with a crooked gait – Fern and I made up a snide little song about her having a wooden leg which makes me feel ashamed. I remember burning with embarrassment when I worked out a “new math” problem on the blackboard in Miss Young/Mrs. Coleman’s class – she got married in mid-year – and being unable to explain my reasoning so she accused me of cheating.
I remember being a play leader in my K-8th grade school and jumping rope with the little kids. I’d gotten a terrible sunburn and had blisters on my shoulder. At recess, while wearing a blue and white checked dress, the rope hit a blister, broke it open and for the rest of the day, my raw skin stuck to my dress’s shoulder, oozing and disgusting.
These are just a tiny slices of the stacks of memories piled up in my head. It’s no surprise to me that trotting out my thoughts became a go-to strategy for navigating my life. James Joyce wrote an incredibly long Ulysses about one Dublin day’s events and stream of consciousness thoughts in the minds of a few characters. I’d be prostrated by trying to manage the amount of recall I still have access to, while keeping my mouth shut about what’s currently going on in my head all day. Out come the current events.
So yes, I talk about my dead husband because death doesn’t seem like an issue that should be shunted off into a corner. I guess that’s especially true for me as Michael is still so alive in me. I’m comfortable discussing cancer and fear. I’ve had a lot of practice in that area and it seems I might be able to help people who are struggling, both patients and their families.
I like to talk about sex, most particularly the sex interests of women who no longer are in the reproductive parts of their lives, who only want to be sexual for sheer pleasure. That’s a topic that seems entirely under-addressed in our culture, as if we live in the dark ages where women are relegated to a corner after they’ve supposedly passed their prime. I like throwing light on that issue. I really miss my sex life with my husband and feel like people ought to know that even disease doesn’t have to stop people from living their fullest feelings despite tough times. My doctor told me she thought I should write a book about it to stimulate a dialogue. Not today, though.
My birthday is coming this week and I’ll be totally done with the damnable number 67. I never thought I could so thoroughly detest a symbol. My father died at 67. Then Michael died at 67. Then my favorite brother-in-law died at 67. All of them gone from disparate types of fucking cancer. I can’t wait to slam the door on 67. Even if I die this Friday when I turn 68, I’ll be glad to not be part of the 67 curse. I’ve had enough of it. Maybe that sounds silly or superstitious. I don’t care. After all the deaths and endings I’ve lived through in the past seven years, a little paranoia and attributing some dark value to a number isn’t so awful. Maybe that’s part of the mental disorder associated with my hypermnesia. So be it. Don’t try to talk me out of it. I’m doing this age transition out front, outside any rules and in my own way. Which is what I said in the first place.