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Five in Five

One and Forever: Thursday, February 22

It’s a candy cigarette, so calm your tits.

It matters to this story that dusk is creeping around the edges, and thick, quiet snow is falling slowly, slowly from the sky, accumulating into a desert of white dunes outside the large picture window behind my back.

She’s talking, my great pal Virginia is, as she lies on the couch to my left, her feet elevated to help the fluids drain from her leg that swells each day from edema caused by the tumor that has inhabited in her pelvis for twenty years. Every day, to get through the day, her slight body is mobbed, swabbed, bundled, padded, and hooked — with nephrostomy tubes and bags, an under-skin pain pump the size of a hockey puck, gauze, tape, hooks, back-up systems. She is swaddled by the accoutrements of unbudgeable cancer, living graciously and gratefully in constant pain.

Very few people live an example.

Virginia lives an example.

Despite the lashings of medical equipment that snake beneath her clothes, Virginia’s brain roams wide and free. I’m taking trips with her brain now, as she talks over there on the couch, because we are catching stories for her next book, trying to capture them before she has a colostomy in a couple weeks, the next procedure aimed at improving quality of life. Writing is difficult business when sitting is often impossible, but if she can lie with her legs up, she can talk, and I can type.

So far, she’s told me seven-and-a-half stories — five of them about a neighbor boy she fostered, one about injustice on the playground, another about a woman on a park bench in Germany,. By way of a breather, we’ve let ourselves get derailed from a story about the day she met her future in-laws after I’ve asked some follow-up questions.

 

Now we’re talking about Richard, the youngest of her four brothers, the one I sometimes forget about because he was gone before I met her.

She was a senior in high school when he was born, but despite — maybe because of — that age difference, they felt a genuine connection. He loved writing, wanted to get into film, got a job with a kind of documentary company that at some point did a commercial involving a wallaby and luggage. Virginia remembers being so envious that Richard got to be on set with a wallaby, and she didn’t.

Not too long after Virginia returned home from a trip to Europe, her brother Dan called her to tell her that Richard, then 26, had been driving to Jackson Hole from Minnesota with a friend, for a vacation. Near Billings, in central Montana, Richard fell asleep at the wheel, and then awakening with a jolt, he over-corrected, and the car flipped and rolled into a ditch. With no seat belt on, he was thrown from the car and died within three minutes. His friend lived.

Later, after the immediate worst of it, after an undertaker named Mr. Graves readied Richard for permanent rest, Virginia awoke in the night, her heart racing. Panicked by the atrial fibrillation, she went to the emergency room, clutching her chest, and told the doctor, “It feels like my heart is broken.”

It was.

After Richard’s death, as his mother and siblings sifted through his belongings, Virginia claimed some treasures to keep her brother close: a pottery serving bowl which she had gifted to him, reclaimed now; a pair of his wool socks, eventually worn to nubs; a blue-and-green plaid flannel shirt, also worn to threads, and his belt, which became her default belt, her go-to, the only one she has worn now, as her own life winds down, these past two years.

Thirty-seven years have passed since Richard died, and his belt is with her as she dies by millimeters.

And so it matters to this story that darkness filters through the glass, soft snow sifts to blanket the ice-locked ground.


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crying

I’ll Tell You Why I’m Crying

I’m crying.

I’m crying because I’m running.

I’m crying because I’m running because my right eye weeps whenever the slightest breeze blows against it.

I’m crying because I’m running because my right eye weeps whenever the slightest breeze blows against it because the tear duct is apparently clogged.

I’m crying because I’m running because my right eye weeps whenever the slightest breeze blows against it because the tear duct is apparently clogged, but the way a person gets a tear duct unclogged involves jamming a metal rod down the duct and plunging it out.

I’m crying because I’m running because my right eye weeps whenever the slightest breeze blows against it because the tear duct is apparently clogged, but the way a person gets a tear duct unclogged involves jamming a metal rod down the duct and plunging it out, and I’m not ready to undergo that procedure this month because I’ve been dealing with my torn rotator cuff and working through the impending burden, both physically and psychically, of having a surgery in March that will then entail a month in an immobilizer and a 4-6 month recovery.

I’m crying because I’m running because my right eye weeps whenever the slightest breeze blows against it because the tear duct is apparently clogged, but the way a person gets a tear duct unclogged involves jamming a metal rod down the duct and plunging it out, and I’m not ready to undergo that procedure this month because I’ve been dealing with my torn rotator cuff and working through the impending burden, both physically and psychically, of having a surgery in March that will then entail a month in an immobilizer and a 4-6 month recovery, and also I sometimes have a sensitivity in one or more of my teeth in my lower right jaw even though the dentist took x-rays, and everything looks fine.

I’m crying because I’m running because my right eye weeps whenever the slightest breeze blows against it because the tear duct is apparently clogged because the way a person gets a tear duct unclogged involves jamming a metal rod down the duct and plunging it out, and I’m not ready to undergo that procedure this month because I’ve been dealing with my torn rotator cuff and working through the impending burden, both physically and psychically, of having a surgery in March that will then entail a month in an immobilizer and a 4-6 month recovery, and also I sometimes have a sensitivity in one or more of my teeth in my lower right jaw even though the dentist took x-rays, and everything looks fine–but she also mentioned “bone loss” and “We’ll keep our eye on it” and “Sometimes a root canal has to be redone”–and the very thought of having a root canal redone, even at some indistinct point in the future, is enough to make me cry.

At the core of it, I’m crying, one plopping tear at a time from my right eye, because I’m running along a beachfront road where it’s windy.

And I’m crying, one plopping tear at a time from my right eye, because my body is too much with me, yet I’m willing to let a few things ride for awhile because I’m able to.

And I’m crying, two plopping tears from both eyes, because I’m listening to my friend Ellen talk in my ears, ears which, knock driftwood, still work fine.

And I’m crying, two plopping tears from both eyes, because I’m listening to my friend Ellen talk in my ears, ears which, knock driftwood, still work fine–even though a few weeks ago when I went to the doctor about my shoulder, she also noticed that my right ear was jammed full of ear wax, to the point that she had her nurse, whose abilities I’m not completely convinced put her at the head of her class, pour softening drops into my ears and flush them out, a process that required me to hold a bowl under my ear while she squirted syringe after syringe of warm water into my skull, at the end of which the nurse looked into the bowl to take stock, saw nothing much, and remarked, “Hey, there are a couple of flecks!” and then she looked into my ears and declared them fully cleaned out, except I wasn’t quite sure what she was saying because it had been hella loud to have syringe after syringe of water squirted into my skull, and so I was feeling a leetle deef.

And I’m crying, two plopping tears from both eyes, because I’m listening to my friend Ellen talk in my ears, ears which, knock driftwood, still work fine–even though a few weeks ago when I went to the doctor about my shoulder, she also noticed that my right ear was jammed full of ear wax, to the point that she had her nurse, whose abilities I’m not completely convinced put her at the head of her class, pour softening drops into my ears and flush them out, a process that required me to hold a bowl under my ear while she squirted syringe after syringe of warm water into my skull, at the end of which the nurse looked into the bowl to take stock, saw nothing much, and remarked, “Hey, there are a couple of flecks!” and then she looked into my ears and declared them fully cleaned out, except I wasn’t quite sure what she was saying because it had been hella loud to have syringe after syringe of water squirted into my skull, and so I was feeling a leetle deef–and when my friend Ellen talks in my ears, which are now apparently working fine due to having a few microscopic flecks of ear wax removed from them, her voice is catching since she was choked up when she recorded this episode of her podcast.

Ellen got choked up during Episode 18 of her podcast, which is called The Radiation Diaries, because she was recalling a moment when she was waiting, somewhat impatiently, for her 17th radiation session.

Ellen got choked up during Episode 18 of her podcast, which is called The Radiation Diaries, because she was recalling a moment when she was waiting, somewhat impatiently, for her 17th radiation session; she had managed to get herself to the appointment on time and was ready to go, yet as she sat, expectantly, ready to roll and get the hell out of there, she heard a bell ding.

Ellen got choked up during Episode 18 of her podcast, which is called The Radiation Diaries, because she was recalling a moment when she was waiting, somewhat impatiently, for her 17th radiation session; she had managed to get herself to the appointment on time and was ready to go, yet as she sat, expectantly, ready to roll and get the hell out of there, she heard a bell ding, and when a bell dings, it means someone’s treatment is just starting–so Ellen realized she would have to wait because they were running late and just starting the session of the patient before her.

Ellen got choked up during Episode 18 of her podcast, which is called The Radiation Diaries, because she was recalling a moment when she was waiting, somewhat impatiently, for her 17th radiation session; she had managed to get herself to the appointment on time and was ready to go, yet as she sat, expectantly, ready to roll and get the hell out of there, she heard a bell ding, and when a bell dings, it means someone’s treatment is just starting–so Ellen realized she would have to wait because they were running late and just starting the session of the patient before her–and then, ten minutes later, Ellen heard all the technicians and the previous patient talking and laughing and carrying on, and she, well, she was still sitting there, feeling her day get away from her.

Ellen got choked up during Episode 18 of her podcast, which is called The Radiation Diaries, because she was recalling a moment when she was waiting, somewhat impatiently, for her 17th radiation session; she had managed to get herself to the appointment on time and was ready to go, yet as she sat, expectantly, ready to roll and get the hell out of there, she heard a bell ding, and when a bell dings, it means someone’s treatment is just starting–so Ellen realized she would have to wait because they were running late and just starting the session of the patient before her–and then, ten minutes later, Ellen heard all the technicians and the previous patient talking and laughing and carrying on, and she, well, she was still sitting there, feeling her day get away from her, but then she realized that those voices were exuberant, and they were celebrating something.

And then a patient Ellen recognized walked out, a woman whose hair Ellen had previously admired in the waiting room, even after she realized it was a wig.

And then a patient Ellen recognized walked out, a woman whose hair Ellen had previously admired in the waiting room, even after she realized it was a wig, and this time the woman wasn’t wearing her wig but, rather, was wearing a soft cap that covered her bald head, and this woman was the one who was so happy and who had held up Ellen’s appointment.

And then a patient Ellen recognized walked out, a woman whose hair Ellen had previously admired in the waiting room, even after she realized it was a wig, and this time the woman wasn’t wearing her wig but, rather, was wearing a soft cap that covered her bald head, and this woman was the one who was so happy and who had held up Ellen’s appointment, and it was her last day of four weeks of radiation after chemotherapy, and she exclaimed to Ellen, “I get to ring the bell!”

In such a way, Ellen learned that not only is there a bell that rings when a radiation treatment begins, there is also a bell that patients ring when their treatments are completely finished, when they are able to return to days like any other, not days built around appointments and changing into dressing gowns or soft jammies and waiting for the patients before them to be done. Ellen is choked up as she recounts the woman saying that, no, she wouldn’t be doing anything special to celebrate her last day of treatment, that she was just going to work to have a normal day, that she was just going to “have my life back.”

So Ellen’s voice gets thick and shaky as she tells this story, and my single eye dripping turns into two eyes dripping because that woman rang the bell.

In a few weeks Ellen will ring it, too.

Then all our eyes can drip together, and it will have nothing to do with plugged tear ducts or windy beachfront roads or imminent shoulder surgeries.

It will have everything to do with the triumph of medicine, the astonishment of bodies, the glory of spirits, the sharing of experiences, the power of voices,

the fact that it’s not such a huge deal after all

if our appointments are running late.

Bell

—————–

Listen to Episode 18 here: Episode 18

Listen to all of Ellen’s episodes here: The Radiation Diaries

—————————–

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weight of the world

Her Body, Her Self: Part II

After her beloved grandmother’s death, the specifics of Jayne’s molestation, stifled for so long, pushed their way out. The resulting confluence of grief, shame, and bewilderment caused Jayne to shut down completely. She was unable to concentrate, unable to lead her team of three other Covenant Players, unable to serve as their mentor out on the road; she was an emotional mess.

When Jayne’s grandma died, she and her team were in Northern Minnesota, staying in a host home. Jayne headed to Canada for the funeral and then rejoined her Covenant Players team in North Dakota. The team of stand-up individuals then accompanied Jayne to a town where they had performed previously, a place where Jayne had formed a deep connection with a loving family, the Dotans. Knowing that she wasn’t okay, that she was non-functional, that she was falling further into a pit of raw devastation, Jayne needed time to recover, so she took shelter in their support.

Initially, Jayne moved in with family who was friends with the Dotans; she lived with them for six months. After that, she moved in with the Dotan family and remained there for years. During that time, she began deliberately working on her abuse history and its resultant issues. Once she began facing and talking about the abuse that had occurred in her childhood, the serious weight gain began for Jayne. Similar to the same way a toddler who makes a leap in language development might experience a regression in physical development, Jayne’s body reflected the pain that her brain was processing. During her years with the Dotans, as she liberated her memories, grieved for her grandmother, and gained significant weight, Jayne also started attending college and became involved in theater and performance.

Then, in September of 1996, just as Jayne was getting some traction in her life, her mum was diagnosed with cancer.

As her mother’s health declined, Jayne reverted to her grandmother’s motto for comfort: “Fuck the world; let’s get ice cream.” During her mum’s illness, Jayne’s sister did much of the care taking since she was geographically closer, but Jayne got there as much as she could; she would alternate a couple of weeks of attending college classes with driving to Canada to help with her mother for a few weeks. Back and forth between worlds, helping usher her mum toward her death, Jayne–an emotional eater fighting through the worst of stresses–gained even more weight.

From the time of her mum’s diagnosis–to her death a year later–and with a few years of grief beyond that– Jayne gained a hundred pounds.

A changed body shape doesn’t necessarily change the essence of the person. Somewhat astonishingly, it’s entirely possible to gain a hundred pounds, or to lose a hundred pounds, without a similar change occurring inside. Yes, there is always a mind/body connection; at the same time, there can be a profound mind/body disconnect.

For Jayne, the disconnect meant that she was still going river rafting, riding motorcycles, going to the bike rally in Sturgis, South Dakota.

Jayne Sturgis

Yet while she remained active, a full participant in life, her subconscious knew something was afoot. In the years following her mother’s death, Jayne didn’t weigh herself. She refused to get on the scales at the doctor’s office.

As it can, pursuit of education gave her life forward momentum and purpose. Jayne earned her Associate of Arts degree in 1997, an Associate of Science degree in Corrections in 1998, a Bachelor’s degree in Sociology in 2000, and her Master’s of Sociology in 2003. Her Master’s thesis was a case study of a woman who’d been traumatically abused by her husband, a woman who’d also been a victim of childhood sexual abuse. The interviews they did together were hard for Jayne; sometimes, the sheer brutality her subject’s experience and its intersections with her own history caused Jayne to vomit. Thus, in addition to working on her issues with a counselor, Jayne’s education served as a form of therapy.

Then, in February of 2006, her second father, Mr. Dotan, was diagnosed with Stage 4 colon cancer. Two months later, Jayne’s dad–that born salesman who could have convinced a tribe of nomads they needed a camel load of sand–died. He’d lived as diabetic in denial, having undergone a partial leg amputation and problems with his eyes before his body gave out. Rounding out this spring of stress was Mr. Dotan’s death the month after Jayne’s father passed away. Bam. Bam. BAM.

In the face of these losses, Jayne hit a new low.

And a new high. Her weight had hit its peak: 436 pounds.

So there Jayne was: in her early thirties, finished with graduate school, working at a Parenting Resource Center, having lost both a surrogate and biological parents, feeling emotionally wiped out, weighing 436 pounds. Something had to give.

Fortunately, the same way education can change everything, so can a baby.

In this case, the baby was Jayne’s niece. This little girl, born the year before Jayne’s father(s) died, brought a new dimension to Jayne’s choices. She wanted to be there for her niece; as the last person alive holding the family surname, Jayne wanted to represent in this child’s life. Deep inside, she knew one thing: if she didn’t do something about her weight, she was going to die.

After several thwarted attempts, Jayne found an insurance company that looked at her BMI of 64 and agreed “Hell, YES,” a gastric bypass surgery was merited. In August of 2006, Jayne underwent an old-school, textbook “open roux en y” surgery. In the weeks after the surgery, she could have three one-ounce cups of liquid each day for her meals. After some time, she moved on to eating little squares of toast. If Jayne overate, she would throw up and become, as she puts it, “a hot frickin’ mess.”

Obviously, the change wrought by the surgery was huge, akin to applying defibrillator paddles to a heart in crisis. With her weight loss jump-started by the surgery, she lost 100 pounds in three months.

Whereas earlier in her life, Jayne had gained weight while letting out the secrets of sexual abuse, now weight loss opened up a channel that allowed other hidden information a means to come out.

Three months after the gastric bypass, Jayne was visiting her friend Sarah’s house, panicking because the initial weight loss was slowing down. Knowing that she’d failed at every other weight loss effort in her life, Jayne was gripped with fear, doubting that the results from the bypass would continue. Watching Jayne’s agitation, Sarah asked, “So what haven’t you worked on? If you’re an emotional person, and these feelings are connected to weight, what else is hanging out there? What haven’t you connected?”

Sitting at Sarah’s feet, Jayne finally allowed the dreaded words passed her lips: “I am gay.”

Immediately, she tried to suck them back into her mouth, to unsay them, even though Sarah’s reaction was no more threatening than a neutral “Are you sure?”

After that moment of coming out, Jayne sobbed for three days, drawing, writing, covering her bedroom floor in Sarah’s house with paper. Attempting to lend balance to Jayne’s emotions, Sarah challenged her to have a plan before she left and advised her, “Don’t jump completely into the gay thing.” Thus, Jayne went home and started talking to people. In short order, the music teacher at the college in town recommended a local woman named Claire as a resource to talk to. Claire, a lesbian, had been a college instructor until her retirement and had worked for decades as an advocate for sexual minorities.

One week after being given Claire’s name, Jayne ran into Claire at a play, in the lobby. Jayne used the moment to tell Claire–to ask Claire, “I’ve been told you might be able to talk to me.”

Looking closely at Jayne, Claire asked, “Is this the kind of conversation we can have at the coffee house, or do we need to meet at my house?”

They met at her house. They talked for hours. Claire proved to be the perfect resource for Jayne–affirming, questioning, explaining.

Bolstered by her talks with Claire, Jayne came out to her sister that Christmas. She came out to more and more people. Eventually, her friends were ready for her to hook up with someone, and when one of them asked, “So, Jayne, what are you looking for in a woman?”, the answer was, “Well, a 45-year-old version of Claire would do it for me.” Remarkably, the friend’s conclusion was not that they needed to search out such a person but, rather, that Jayne saw what she wanted in Claire. The friend urged Jayne to “go for it.”

And so it began.

Over the next few months of meeting with Claire, Jayne knew she was falling in love. When they would part from each other, the looming question was: “When I am going to see you next?” Their email conversations gained momentum. They became flirtatious. What Jayne realized, with each passing day, was that she was attracted to Claire emotionally, but not necessarily physically. In fact, she was on the verge of telling Claire, “I just can’t do this,” when, one night, Claire took her from a wine tasting to an evening at the theater, and then, during the performance, Claire reached over and grabbed Jayne’s finger and held onto it.

Jayne’s brain shut down as she asked herself, “Holy shit, what is this about?” That night, Claire kissed her on the cheek and all the next day, Jayne couldn’t stop thinking about Claire and “those fucking fingers.” From then on, when they were together, they sat knee to knee, teeming with schoolgirl crush. There was a lot more kissing. There was delightful groping. Unquestionably, the element of physical attraction had kicked in. As Jayne explains it, “When that switch flipped, from then on, when we lock eyes, I don’t see her age.” The way Claire frames their physical relationship is equally poignant: “I was her first, and she is my last.”

In the summer of 2008, friends and family from near and far gathered to witness their union. During the wedding ceremony, a very special guest–her willingness to attend this wedding stunned everyone–rose, walked to the front of the church, and gave a reading. Proving that the ghosts of the past can find peace, and that people are always more than we think, Jayne’s “Icky” grandma, the very proper British war bride, had found it within herself to attend her overweight grand-daughter’s lesbian wedding.

As Claire and Jayne were dating and committing, Jayne continued to lose weight, eventually getting down to 230 pounds. With a two-hundred pound weight loss behind her, she was wrapping and binding her torso every day due to excess skin. To truly be free of the weight and reclaim her body as a place she was glad to inhabit, Jayne needed to get rid of the bindings, so she had skin-removal surgery on her stomach surgery in 2009. This surgery took off a remarkable 19 pounds of skin from her belly and left her with 172 staples around her entire body. Also during this process, the surgeon lifted her rear end and created new belly button for her. Instantly, post-surgery, weighing in around 219 pounds, Jayne felt better, in terms of her self-perception. Finally–FINALLY–she was able to wear clothes that made sense, which resulted in a significant confidence boost.

It’s important to note that, as she was working on herself, Jayne was also helping others. Her primary job had her working with “at risk” students. In truth, every job she has taken has been quite deliberately chosen because it allows her to make a difference for others. She is exceedingly aware that “Key people saved me, made the difference, fostered resiliency.” As a result, Jayne’s professional life is devoted to giving it back–particularly in her work at the local high school, where she serves as a touchstone for the school’s “problem” kids. In addition to working to keep them on track, she also teaches at the community college and takes groups of teens to Minnesota’s Boundary Waters Canoe Area on trips every summer.

Then, in 2010, Claire was diagnosed with cancer–a return of cancer she’d fought off twice before. The stress of that time, with driving back and forth to appointments, with her partner undergoing chemotherapy, triggered Jayne’s emotional eating habits. By autumn of 2011, Jayne was back up to 256 pounds, back in her size 16 pants. She realized she was losing control.

It was around this time that Jayne’s sister, who had become involved in selling and promoting the nutrition-and-wellness products of the company called Visalus, drafted Jayne as a distributor. If Jayne joined her sister’s team, she not only could help her sister, she also could help herself.

Visalus is a goal-oriented company, and Jayne is a goal-oriented gal. Because Visalus asks customers to state their goals publicly and then uses group support to help motivate participants, it was a good fit for Jayne (“You give me a challenge, and I’ll take it.”). Responding to Visalus’ challenges, Jayne went beyond thinking solely about diet and began incorporating exercise into her days–for the first time since childhood.

Throughout the course of several 90-day Challenges, Jayne fought back against the encroaching weight. To increase the challenge, she launched herself into a full-on madcap attempt to try out as many kinds of activities as she could manage. She bought a treadmill and ran her first 5K. She took a swimming lesson; with the technique of the strokes re-awakened, she began swimming regularly. She started attending yoga. She tried dog sledding, skjoring (being pulled on skis by a horse), downhill and cross-country skiing. She attended a Core Challenge class…which raised the half-joking question, what in her life so far hadn’t challenged her core?

With the exercise switch flipped, Jayne worked off the pounds. Even beyond Visalus challenges, her personal goal was to get to a point where she was satisfied with her weight and felt like she was “done.” At that point, she planned to reward herself with one last surgery: getting her “batwings”–the excess skin on her arms–removed. Without that surgery, her exterior would never truly reflect all the work she’d done, both in therapy and in tennis shoes. As she mulled over the idea of a magic number with regards to weight, trying to figure out when she could call an end to the fight, it became clear that there is no magic number and that weight, so plagued by emotions, is actually best when measured emotionally. Jayne had to ask herself, “Do I feel confident? Do I feel healthy? Do I feel like I can sustain this?” When she realized her answers to these questions were “Yes,” and when I doctor mentioned that, in his opinion, her body was at a good stage for the surgery, Jayne realized it was time to reward herself and get rid of the batwings. She was in the best shape of her life, swimming eight miles a week. She was ready to see what her swimming arms really looked like under all that skin.

In April of 2013, Jayne had the surgery on her arms. Going into it, she was terrified because it meant she couldn’t work out for six weeks, and her relationship with activity and a reasonable weight still felt new enough that she didn’t fully trust that it would always be a part of her life. During the recovery from the surgery, Jayne did gain fifteen pounds, but once she was given the go-ahead to move her body, she worked “like a mother-fu**er” to get it off. Her strongest motivation post-surgery came from the state of Minnesota, which had finally legalized same-sex unions. If she and Claire were going to get married “for real,” then Jayne wanted to look better than she ever had before. As their August wedding date approached, Jayne lost those fifteen pounds, and then some.

The wedding was the high point of a very high summer. At long last, her body felt truly healthy, and when she looked in the mirror, the person Jayne saw felt like someone she wanted to see. Fantastically, she could weigh herself at any point in any day, and the number on the scale was under 200 pounds. It felt suspiciously like Jayne had made friends with her body.

What’s more, with the fitness piece in place, and her arms actually looking as strong as they were, Jayne started to discover a long-hidden “girlie” part of herself. She went shopping. She bought dresses. She wore tank tops. She experienced the kind of moment that is folded away in the heart, like an unexpected love note, when she was attending a conference in Atlanta and had been having a terrible week. At a conference event, Jayne was wearing maxi-dress, and a beautiful woman came up to her just to say, “I’ve been noticing you, and I want you to know I really like the way you dress.” This compliment was incredibly well timed–the capstone to Jayne’s celebration of her new self–because a couple of days later, when she got off the airplane back in Minnesota, Jayne had to face a problem that had been bothering her. Strangely, her right hand had been and continued to be huge, seemingly infected.

After spending a day at Urgent Care, Jayne came home with a course of antibiotics. They didn’t help. Her hand continued to look like she weighed 436 pounds again. Something else was going on. Jayne met with a specialist at the Mayo Clinic, a woman whose empathy and understanding were exactly what Jayne needed. During their first appointment together, the doctor had a moment of revelation when Jayne lifted her arm and exposed, under her skin, “a cord.” Apparently, during her arm surgery, the surgeon had cut through a bundle of lymph nodes, which then created some cording. With this revelation came an eventual diagnosis. Jayne had lymph edema. The honeymoon was over.

Many people have seen women with lymph edema, women who are survivors of breast cancer. As a consequence of their illness and its ensuing interventions, they can end up living the rest of their lives wearing compression sleeves that compensate for what the lymph system is no longer doing: draining fluids. When we see such women, the response is sympathy, respect, gladness that they are still alive.

For Jayne, cancer wasn’t the culprit. The fact that she’d undergone an elective surgery–“I was vain”–and ended up with a lifelong side effect ate at her. For the first twenty-two days after her diagnosis, Jayne cried every day. Her emotions swirled from regret to anger to outrage to guilt. The guilt came only partially from her feelings that she’d been vain; the bigger cause of her guilt was the face that Claire’s cancer, held for months in a kind of remission, had returned. They had learned on September 4th that the tumor in Claire’s pelvis had doubled in size during the previous three months. She would be returning to chemotherapy. Then, in early October, Jayne got the diagnosis of lymph edema, subsequently feeling herself crash from the highest of the highs to the lowest of the lows.

Between the two of them, they were sometimes attending seven appointments a week at the Mayo Clinic. When one works more than full-time and is constantly driving 45 minutes to the hospital, it’s hard to find time to go have a restorative swim at the pool.

Jayne was going to physical therapy, getting medical massages to help drain the fluid out of her arm, learning that she can anticipate being on antibiotics frequently for the rest of her life, as a scratch or a cut will likely result in infection. At the same time, she was being loaded up with information about how to wrap her hand (all day, every day), how to deal with the cracks in her skin that result from daily wrapping, how she will have to monitor her physical activity so that she just barely hits her limit and stops before she overdoes it; she was learning that there was no such thing any more as waking up and dashing out the door. Her hand, for the rest of her life, will require constant, detailed, careful, time-consuming tending.

Jayne hand

With so many appointments and so much emotional fallout, Claire and Jayne were struggling. One of them had cancer; one of them had lymph edema. The stakes were radically different for each of them, yet Claire’s insidious tumor was a quiet thing that needed periodic tending while Jayne’s hand was a big, visible thing that requires constant thought and care. Jayne’s mind was consumed with her sadness over her hand–over never again wearing a maxi dress without its impact being marred by the presence of a fistful of gauze and a compression glove–yet it’s not as though she was dying. For months, she struggled with the anguish of letting herself feel her own pain while trying to acknowledge that it was something she could live with. Going into the closet to put on a dress resulted in a good cry rather than a personal celebration.

Fortunately, the escalating tensions in their household were defused by the promise of travel. Both Claire and Jayne love to travel and have had some of their very best times as a couple after getting on an airplane and winging off to sights unseen. Now, it was time for their honeymoon, even though it felt like the honeymoon had ended in the Mayo Clinic.

Although both women were well traveled, neither had been to South America before. To celebrate their legal wedding, they had planned a trip to Peru and Machu Picchu. The time they had together was a perfect balm to what ailed them. Claire cuddled a baby sloth. It peed on her; she never wanted to wash that shirt again. In a native village, Jayne shot a blow dart. They went fishing for piranha. Claire, months later, still carries the jaw of a piranha, well protected in a Ziploc baggie, around with her.

Jayne blows

Thus, their honeymoon trip restored something important between them. It also presented Jayne with the chance to take her hand on the road and learn to deal with it outside of normal daily existence. Plane travel is terrible for lymph edema, and so Jayne’s hand was a mess. Yet she had a great trip.

If a messy hand and good times could co-exist, then maybe everything was going to be all right.

Initially, as she grappled with the development of the lymph edema, Jayne kept uncharacteristically quiet about it. An extrovert who needs to externalize to process, she made no public announcement of her new condition. When she was out in the world, she would pull down her sleeve and try to cover her bandages. Outside of a close circle of friends, she didn’t tell people. Those who loved her would want to be outraged on her behalf, to yell that she should sue the surgeon, to overlook the fact that lymph edema is listed as a potential complication of the arm surgery, to forget that Jayne signed off on the idea of  potential complications. Before she could handle people’s reactions to the edema, she needed to be more in control of her own.

And then, after a few months of struggling with the intersection of her and Claire’s diagnoses; after learning to deal with the minutiae of her hand; after taking a wonderful trip with her love; after considering that she might, in fact, consult a lawyer; after feeling herself completely crumple; after making herself get back in the pool regularly;

and after standing back up and shaking her swollen fist to the sky–

Jayne came out–

this time with a disclosure of the lymph edema. She told everyone: her friends, her family, her co-workers, her students.

When the flood of their reactions hit, Jayne wasn’t swamped by them. She didn’t drown in their loving outrage and concern.

Nope.

She handled them. She helped her friends, family, co-workers, students feel better about her condition. She was ready.

And as she swam through the wave of love, she stayed afloat.

She became the hero of her story.

Jayne collage

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friends

To Feel the Sun from Both Sides

I met her fifteen years ago, when I was 29, and she was 59. We taught at the same college, and my first semester there was her last.

She retired when she turned 60, and although we’d met when we were colleagues, our friendship didn’t really begin until we no longer worked together. Having encountered each other at a few dinner parties and grazed glances over the cassoulet–recognizing in each other a mutual humor—we took to email, where our acquaintanceship evolved over months through nightly typed conversations.

I courted with my husband through email a few years later, but Virginia was my first modern epistolary love.

In our nightly emails, we shared stories of romances, dysfunctions, students, travels, families, community involvements. As we grew closer through writing, we grew closer in life, as well. I ate dinner at her house often; we met over coffee; we eased the transition of a Polish Fulbright Scholar and her daughter into Midwestern American life.

At some point along the way, Virginia admitted her sexual orientation to me, which came as no surprise. I like boys; she likes girls. That openness freed us to discuss her on-again-off-again-always-there-but-never-healthy long-term partnership with a woman in town. That openness freed us to agree that, because hair, including that on the chin, continues to grow after death, we would be there for each other to perform any post-mortem plucking or shaving necessary to present a respectable corpse. That openness freed me to gift her with a pair of thong underwear covered with smiley faces; when she tried them out by wearing them to church one Sunday morning, she was gripped with such giggles about her I’m-sixty-one-and-guess-what’s-under-my-pants-as-I-take-Communion secret that she had to bury her head in the hymnal and search for a non-existent song called “Oh Holy Jeebus, I’m About to Pee My Thong.”

After awhile, we took trips together: visiting Madison to eat Ethiopian food; driving to see the circus and National Crane Foundation in Bariboo, Wisconsin; flying to Ireland to travel the West Coast in a group of four women. As we rode on the bus that took us from Dublin to Galway, Virginia provided me with one of my all-time favorite memories. We were traveling with my cousin, someone prone to fits and pouting when not given her own way; said cousin—adult in chronology more than temperament–was in a snit about some aspect of the travel plans and had crossed her arms belligerently and refused to look at or talk to anyone, creating tension and anxiety amongst us all. After a stretch of tolerating the manipulative huffiness, Virginia leaned across the aisle and announced, gently but firmly, to Crabby Cousin, “Say, you see that clock up there?” When Crabby Cousin cut her eyes up to the clock at the front of the bus, Virginia continued, “You have until the big hand hits the twelve to get over yourself and shape up.”

I still regret that I wasn’t wearing a thong, as I would have peed it right there and then before sliding it out the leg of my jeans and quietly setting it onto my seething cousin’s knee.

The years followed each other, and Virginia was always there, always attentive to me, always gracious, always thoughtful. When I turned thirty and was living alone in our small town, she invited me over for cake and candles. Without her, there would have been none. When I was cavalier about recycling and couldn’t be bothered to set up a system, instead tossing my pop cans into the trash—clearly being an adult in chronology more than temperament runs in the family–she suggested, “Just put them into bags in your garage, and I’ll come pick them up every few weeks.” When my car neared death, and I needed a replacement but couldn’t see how to finance such a thing under the weight of existing debt, she noted, “I’ve been needing a new car.  Why don’t you take my old one? Pay me, let’s see, $500. Payments are due whenever you can make them, in any amount.”

Then I fell in love with Byron, and she did too. When I suffered a miscarriage on a night when Byron was five hours away, and I called her in tears at 10:30 p.m. to whimper, “Something bad just happened in my toilet, and there’s lots of blood,” she was at my house by 10:35 and held my hand for two hours as I lay on the table in the ER and let the medical staff extract bits of tissue from my cervix.  A few days later, when we discovered I’d been carrying twins, and one Little Gripper still hung in there, Byron and I called Virginia first. A few weeks after that, at our wedding, at our request, she stood up and recited the Lord’s Prayer in Norwegian, thus including Byron’s Norwegian-speaking Christian grandparents. A few months later, as I pushed my first baby out into the world, Virginia stood at my knee, welcoming Allegra into the world.

But I am just one person, just a speck in her larger sphere. Outside of all the many everythings she has done for me, Virginia has a long history of public service, in particular of easing newcomers into the community. As a former foreign language and communications teacher and someone who lived at one point in Germany and some decades later in Madagascar, she is particularly sensitive to the hurdles immigrants face. Thus, she sponsored a Bosnian family when they moved to town and for several years after, setting them up in an apartment, getting them work, caring for their children. This, she has also done for multiple other families and couples; her kitchen table has a permanent open seat for those wanting to learn English, wanting to learn how to drive in the U.S., wanting help translating a letter from one language to another.

She also has worked building community amongst the GLBT population and their families through her decades of work with a group originally called SMAC (Sexual Minority Advocacy Council) but which has evolved in name to Q & A (either Questions & Answers or Queers & Allies—as she says, “Take your pick”).  In the spare minutes not occupied with helping all the struggling souls in a sixty mile area improve their lots or overseeing the care of her Alzheimer’s-riddled mother, she has also helped awaken the community to the need to make sidewalk corners, public buildings, and bathrooms accessible to people with mobility impairment. Rounding out her volunteerism (but in no way completing the list) have been her work with People Needing People, a weekly social group for developmentally challenged adults, and her participation on the boards of the Christian Education Center and a local nursing home.

At some point, do-gooder work can turn into a litany of “did this, did that” and sound self-congratulatory or like resume stacking. Here’s where Virginia is different: her purpose is not to be a Do Gooder. Her purpose is to live life right and well and, thusly, to do some good.

More than a decade ago, she noticed that the new family across the alley, having just moved up from the South, seemed oblivious to the way the frigid Minnesota weather was affecting their tiny dog. They left the three-pound dog outside all day and night, all year ‘round. Once she realized this, Virginia ventured over and caught the mother of the family when she was hanging up laundry, taking the opportunity to offer a piece of thick foam for the dog to stand on; to offer a smaller, lighter chain for the dog to be tethered on; to offer the addition of a dog house; to offer to adopt the dog as her own. “Oh, no,” the mother replied.“The kids love Purdy too much to let her go.” Eventually, the mother—overwhelmed by parenting children with disabilities and an unhappiness with her life—approached Virginia and said, “You can have Purdy. For $50.”

Unable to stomach the name “Purdy,” Virginia morphed it to “Perky” and bestowed upon that pup the finest of love and care (sharing dog ownership, as she had with her previous dog, halving it with a woman in a neighboring city, an agreement that afforded them both the benefits of life with a pet and freedom to travel). Soon thereafter, a hot fifty bucks in her pocket, the mother across the alley left her family. The father had a job and was not the right person to tend to his left-behind children. However, in keeping them—despite severe disabilities—at home, he continues to receive state aid. With the most functional child, whose issues stem from Asperger’s and neglect, Virginia has forged a life-altering relationship. When he was very young, she took him to the library every week, read to him, fed him, rode bikes with him to the nature center for picnics, spent two years teaching him to blow his nose.  Now that he’s in high school, she still feeds him (steak and potatoes—the meal he’ll eat), buys him the winter coat and boots he wouldn’t have otherwise, washes his hair in her kitchen sink once a week with the vegetable sprayer, loans him her shaver, requires him to brush his teeth with every visit. More recently, Virginia and her wife, Kirsten, have constructed a hygiene chart for him and reward his achievements with Pokemon DS games; they also helped him obtain a violin so that he can continue to learn the instrument. Were it not for them, his friend count would be zero. As it is, his friend count hovers at two: Virginia and Kirsten.

In the midst of living this rich life, Virginia was diagnosed with endometrial cancer in the mid-1990’s.  She had a full hysterectomy and underwent an intense three days of radiation at the Mayo Clinic, during which her movements were restricted due to the little diamond of radioactivity suspended inside of her; she was dressed in blood-circulating balloon pants, no thong required.

After being declared “clear” for a few years, the cancer returned. More radiation. Remission.

It was after that second round of fighting off mutant cells that Virginia met Kirsten (in a darkened theater, their fingertips touched…), a woman roughly half her age. Early in their relationship, when it was becoming clear they would have a future together, Virginia advised Kirsten, “You’ll lose me to cancer, you know.” Accepting the odds, Kirsten committed fully to sharing the rest of Virginia’s life with her (my standing up as one of Virginia’s two witnesses during their ceremony remains a life honor). On a daily basis, they have been living out a dizzying love story.

And then, well. Last spring. There was a new diagnosis. The cancer in Virginia’s pelvis was awake. Growing. It was time for new action. In the past, it had been radiation. This time, it would be chemotherapy.

Bolstered by Kirsten’s upbeat approach, Virginia viewed chemotherapy as a chance to rock the world of head gear. However, even a dresser drawer full of beautiful scarves, knit caps, and biker hats didn’t ease the painful morning when Virginia staggered out of the shower in full tears, holding a handful of hair.

How full of grace is the universe that, at that moment, she didn’t have to shave her own head? Kirsten held her, hugged her, and revved up the clippers.

Some weeks later, still missing the feel of hair and the ability to pass as “normal,” Virginia decided she wanted a wig. Kirsten and I shared a quick “Ewww. But we hate wigs” before taking a look at the bewigged Virginia and conceding that she looked incredible. Probity channels through the eyes, not the hair.

As her chemo neared its end, Virginia developed a persistent, dry cough. However, her energy remained good, to the point that she spent hours each day doing yard work, one day tying off eight bags of raked leaves before remarking, “I’m not sure why, but I do feel a little tired.”

The cough became worrying. Follow-up scans revealed that a side effect of the chemotherapy was infection in the lungs. She was put on a drug to treat the spots.

Some months later—fairly recently–further scans revealed that the “infection” was, in fact, not so benign. Rather, the spots of infection are cancerous tumors. During the months of chemo, the pelvic cancer had metastasized.

The thing about tumors in the lungs is that the conversation changes. Hopeful words like “remission” no longer apply. More common are words like “How much time does she have?”

When I first received the news of the lung cancer, I greeted it stoically, feeling that I’d done my major grieving last spring, when the pelvic cancer had first returned. Okay. So there was a new development. We were dealing with a different beast. Okay.

Stoicism doesn’t become me—it holds my face falsely rigid. More natural are the acrobatics of sustained weeping. While we were staying in the idyllic setting of The Fairy Chimney, the weeping hit. At random moments—chopping carrots, logging onto email, putting away groceries—I’d realize I had tears on my cheeks. One night, Kirsten called, and I ended up having the kind of lovely chat with Virginia that made me feel 29 again. As we made moves to hang up (or, in Virginiaspeak, “ring off”), we both were flooded with the unspoken, with the thought of “I wonder if I’ll ever see you again.” The sound of Virginia blowing her nose lingering in my ear, I clicked the off button on the phone. And then I sat at the kitchen table, heaving and heaving, speckling the merry red-and-white checked tablecloth with tears.

As grief gnawed, I continued to wonder if I would see Virginia again. One day, as I attempted to monologue while crying, Byron interrupted me and noted, “Some of this is about your dad, you know.”

I did know. I did. During the weeks when my dad was dying, I was nine months pregnant, and he was more than a thousand miles away. He died in alone, in a room he’d been moved into the day before. Having undergone an emergency C-section thirteen days before he passed, I wasn’t there. We knew he was going, but I didn’t see him One Last Time.

Even more, the way I loved my dad is the way I love Virginia. It’s pure, full of respect, steady, gentle; similarly, with both my dad and Virginia, their returned love—feeling the sun from the other side—landed in me easily and was uncomplicated by show, contrivance, need. The quietest love lodges most deeply, and these two low-key people occupy the same homely corner of my heart.

My dad’s story is over. Virginia’s carries on. Several weeks ago, another scan of her lungs was done, this time to see if the current medication was having any effect. In what could only be good news to someone living with the word uncurable, she and Kirsten were told that the tumors had not grown. They had not shrunk, but they had not grown. Good news. A day for celebration, in its way. The doctors predict she has somewhere between nine months and three years left.

Such a prognosis changes the tenor of every remaining day. Despite feeling guarded, Virginia and Kirsten are now gripped with a desire to live every day intensely, to grab at everything, to make every minute count. Unfortunately, with her diminished health, there are many things Virginia can’t and shouldn’t do. For example, her plan to visit Turkey this year is out; should she run up against a health crisis, adequate medical help might not be available. Yet travel has been her life’s blood, and so, in deciding how to spend their remaining days together, Virginia and Kirsten are trying to satisfy that need and assure, no matter the restrictions nominally put on her by doctors’ cautions, that Virginia revisits the places and people that have meant the most to her. Thus, they are planning a trip to Denmark and Germany this spring, with Kirsten, perhaps, extending her time by tacking on a leg to Turkey while Virginia flies back to the States. Before that, though, they are capitalizing on Virginia’s current high energy and taking a trip (sponsored by the college where Kirsten teaches, where Virginia used to teach) to London this next week. Anything Virginia wants to do there, Kirsten will make happen.

As a bit of a rainmaker, in fact, Kirsten will make things happen that Virginia hasn’t even imagined.

Like flying me there.

I hit Heathrow on Virginia’s 74th birthday.

—————-

Indeed, I’m about to get on a plane to London and, Sunday night, walk into a fancy restaurant whereupon I, quite cinematically, will interrupt Virginia’s birthday dinner. Although she doesn’t know I’m coming, I have no doubt that she will draw upon her greatest gift and make certain there is a seat at the table for me.

Then, for three days, we will tour castles, go to the theater, gaze upon past beauties in museums. Personally, I don’t care if we do nothing, if we sit in a bare room made out of cinderblocks. I just want to be with My Dear Virginia and see her

not One Last Time

but,

rather,

One More Time.

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