Not Down Or Out

It could be worse. I might not be laughing.

Tag: cancer

Ten Years and Counting

This past week marked ten years since my surgery for endometrial cancer. I am grateful for these past ten years. Some of them have been tougher than others, but I have never forgotten being told by a respected surgeon that my cancer was stage 3 and my life expectancy was significantly diminished. I am no more worthy of a commutation of that statistical death sentence than anyone else, but I credit my sister and her prayer circle for a respected oncologist’s one-month later statement that my cancer was more accurately at stage 1. I believe in miracles and, whether prayer brought a miracle or whether it made me feel I was receiving a miracle, I felt my time here on earth snapped back to something longer. I have tried to make what I can of the “extra” time I have received.

I teach at a different law school than I taught at back in 2011. In 2012, I returned to teaching at the law school that terminated me for being diagnosed with cancer. I returned right after I completed my chemotherapy and radiation treatments and before I felt “better” or even “stronger.” I had the experience of walking into rooms occupied by the supervisor who terminated me and seeing her excuse herself and walk out of another door to avoid meeting me. That was a small vindication because the law school never apologized, never accepted responsibility, and it was another 7-8 months before the law school paid me what compensation remained unpaid on my contract when I was terminated.

There was not much help offered by the legal system that has been my bailiwick since 1988. The EEOC decided not to take on my case. My case had low stakes for everyone except me. I imagine many people living through personal health crises have had similar experiences. I can appreciate their disappointment in finding that their voices, as well as their lives, can be eclipsed by cancer and other diseases. At the same time, when I did not have money for health insurance, the public health system in Cook County, Illinois helped me. I am grateful for that help and the experiences of going through treatment with so many others who were able to find aid in the kindness society extends to those in need.

I do my best to make sure those often forgotten individuals in need of representation and healthcare will someday be represented by young lawyers with passion for causes society has little energy to pursue. Some of my former students now work in public interest, public health, anti-discrimination, and social justice settings. Others give their time to causes as part of their pro bono efforts to make the world a better place for people without voices.

A former student once described me as a character from Poltergeist who helps lost souls “cross over,” saying, “All are welcome. All are welcome.” I aspire to such kindness.

Cancer was not the only health threat in the last ten years. I survived a flesh-eating bacterial infection in 2017 that nearly took my life. I am grateful to the surgeons, doctors, nurses, and other health professionals who have now saved me twice from grave danger. In the current pandemic era, it is tough to make doctor’s appointments and address our own health issues unless we are struck by something like Covid-19. I did make it to a mammogram appointment this summer but need to be more proactive so as to not squander my extra time here with family and friends.

Family and friends have seen me through my darkest hours. I am deeply grateful to my mom, my sister and brother, my nieces, my aunts (both gone now), my cousins, and my dearest friends. All of them generously nursed me through dark hours and helped me keep my spirits up. Barb was with me before and after my cancer surgery. She was with me when I met my oncologist and she took me to some of my toughest treatments like having a camera inserted into my bladder to evaluate the extent of radiation damage. That was quite a day! Dominique brought holistic healing and necessities like a comb and toothbrush when I found myself lying in filth in a county hospital bed over a long Christmas holiday when no family could reach me. Roberta sent out prayers and food for the soul. Mary paid for housekeping to keep up my home while I recovered. My niece Maureen and her now husband Justin came to Chicago to take me to a chemotherapy session. My brother Dan flew in for one of those sessions, too. My sister Kathy came for about a month to help with the numerous challenges of recovery. Joelle, a former student, became a good friend by listening and caring. Some of my former students wrote letters to DePaul University, at which I worked, to protest my firing. Meanwhile Moses, another suprevisor at DePaul, kept me on as an instructor in his certificate program. Roosevelt University kept me on as well. Their confidence in me means so very much even after a decade.

I cannot forget the many bloggers I met here on WordPress either. My blog was a big part of my recovery. The men and women whose blogs I followed were my guides, my friends, and my comfort. I hope I gave as freely as they did. I miss so many of them who met their fates with a grace that I can only hope to one day gather for my own passing. I understand now why thinking of cancer as a battle is misguided. After ten years, I still know it is there and could come back. I know that I recovered, but I did not “win.” I know that we as a society have “lost” many to cancer, but I believe those who pass from it cannot be viewed as having “lost.” Their lessons in courage, dignity, and love linger if we take time to think about mortality’s eventualities.

I can do more with the time given to me. These days I teach and care for my mom in my home. I hope to be able to do that as long as GWU Law will have me and my mom remains with us. It has been her wish that she be home. Sadly, with her Parkinson’s disease and Lewy Body Dementia to contend with, home is where we once lived, a place I cannot take her to visit, much less live in. This is one of the lessons of cancer that I have learned. No matter how successful the treatments are, we do not get out of this world “alive.” I do believe in the afterlife, but it can be very hard to disentangle yourself from the painful beauty of this life, even when the pain outweighs so much of the beauty of it. In the effort to stay, we sometimes cling to the people and “cures” that once sustained us. It takes more courage to face death than I ever thought. When things happen in slow motion, I can appreciate how tough it can be to see death as our winning the battle, rather than losing it.

I guess the biggest differences between me today and me then are not the improved health, the new job in a familiar-but-far-from-home city, the growing generations of family that surround me, or the legacy of young lawyers that will continue when I am gone. What has changed most is a fatalism that I work each day to convert to acceptance. In that acceptance, I hope to one day find a new life. For that reason, October 7, 2021, means ten and counting.

Humbling Experiences

Another Waiting Room

Another Waiting Room

My relationship with my gynecological P.A. is a work in progress. She very much wanted me to see a general practitioner in a clinic setting. So she put me into some waiting list for an appointment at a clinic in Logan Circle. The first time I came up for an appointment the notice came about a day before the appointment. I was unable to make it because I had to work. When I was last at the hospital to see my oncologist the resident checked and informed me I was scheduled for today. So I had a month’s notice.

I will confess that I was reluctant to go. I’m feeling pressure from the P.A. to take blood pressure medicine. My blood pressure has gone up and down. It was at its highest within minutes of learning I had cancer. I shed no tears–not even one for several months–but the stress was affecting my blood pressure for a couple of days. Within three days my blood pressure was back to normal and stayed that way until sometime in the last year. Back in about February it was 180/96. That was the day I had my second post-hysterectomy internal exam. I was over-the-top nervous about the exam. About a week before that appointment it was only 161/111. In May I started getting a swollen ankle and leg and felt the blood pressure climb. My oncologist doubled the dose of the water pill I take. That seems to help the edema and the blood pressure. I have my own cuff at home and take it periodically and my blood pressure was back in the 140/86 range. In August, my blood pressure was 151/92. Dr. H felt it was not a problem, particularly because I have lost weight since February and continue to do so. I am resolved not to start another drug unless I first research it. Once you start some of these drugs it is hard to get off of them and they all seem to cause more side-effects. I am tired of dealing with side-effects!

The other reason I was not keen to go is the hernia. Dr. H wants it fixed. I really cannot contemplate checking into the hospital for surgery after my December 2011 admission to hell there. I am well aware of the risks of exposure to infection in hospitals, and that place did not maintain cleanliness. I thought I might die in that place. I’m not going back there as an inpatient until it is the last option on the table.

October 1 is when the health insurance exchanges open in the U.S. I have not even been able to get a quote for health insurance since my diagnosis with cancer. This will be a new opportunity for me to obtain health insurance on my own. I have no idea what I can afford, but I pray I can afford some new options.

I went for the clinic appointment despite my misgivings. I arrived early. It took forever to find street parking. I entered and went through the same type of processing as at the hospital. Get up. Answer questions. Be seated. Get up. Answer questions. Be seated. It is like the childhood game Simon Says.

I brought work. Lots of work. And I waited. At one point my vitals were taken. My weight was down. The clinic is part of the same county hospital system as my hospital, but the nurse had to ask me about my allergies to medicines because my records were not available or she did not access them. It was so disappointing to know that once I saw a doctor we would need to go through so much medical history.

My blood pressure was 190/110! I had been waiting for some time amidst other patients. I have to admit it was uncomfortable. Small children crying. Wendy Williams (big news today–absolutely nothing), Bethenny Frankel (big news today–some people have friends who make them fat by cooking for them), Fox News (big news today–Sen. Ted Cruz read a Dr. Seuss bedtime story in his 21+ hour diatribe against the Affordable Care Act), and some other talk show that drove me up the wall as angry people yelled at each other.

All voices today at the clinic were heavily accented. I did not recognize my own name when it was called, and I speak some Spanish. My ex-husband could speak Spanish. I’ve heard my name spoken with that accent. At one point, I heard my name and got up and went over to the reception area only to find no one looking for me. All three receptionists were taking on phones. So I said to myself, “Now I’m hearing voices.”

As soon as I sat down, the receptionist called me again. She said, “Sorry, I forgot I called you.” I was not the only person having trouble focusing.

I should be used to this. But I am no longer sick. Just pained after surgery, chemotherapy, and radiation.

The nurse asked if I felt okay, and I did. No headache. No stress other than the situation. I had plenty of work to do, deadlines approaching, and twenty things I’d rather be doing. Even unpacking sounded great.

Two hours after my scheduled appointment I was out of work to do. I was sitting next to a man with a bad cold in the waiting room. I was tired. I was unbelievably sad that there were so many people for whom this was the best option for care. I told the receptionist I needed to leave. I had work to do.

The receptionist called a nurse who put me in a room. Then I heard my future doctor (Dr. S) ask someone to prep the woman in the next room for a procedure, and he went in there. I waited another fifteen minutes before I left without seeing the doctor. It did not matter if he would be free in five more minutes or in fifty. I was as twitchy as I ever get and needed to get out of there.

This is nothing new. This is medicine for people without health insurance. I think by now I should be philosophical and copacetic. But I am tired and stressed and I wonder how anyone with a job ever gets medical help in the system. From the time I left home in the morning until I got out of the clinic I had spent more than four hours without meeting the doctor, and I fell behind in my work.

I am grateful to have this as an option, but I am praying that the Affordable Care Act means I can afford insurance and schedule an appointment instead of being ordered to appear on a day when I need to be at work. I am praying that one day soon I will be able to speak to a doctor about my concerns for more than five minutes.

I have felt bad all afternoon for leaving, but I am now one-half day behind in my work and have non-negotiable deadlines to meet on Friday. This semester I have 25% more students in one class and am paid 40% less than I would have been if law schools could help their graduates find jobs in the current job market or if full-time pay was a little lower than it now is.

At the rate I’m going, tomorrow for me will be like a blister on the back of your heel when you’re wearing new shoes and it is still morning.

Some days I have to remind myself that I am just underpaid and not down and out. I may be feeling humbled by my circumstances, but I still have my sense of humor. That’s the real reason why I’m Not Down or Out.

Walk of Courage

If you have not been reading the blog of Mike Terrell about living with end stage cancer, then you should (See my blog entry about him https://notdownorout.wordpress.com/2013/05/15/facing-the-end/), but I just wanted to shout out that Mike made a turn of the field at a race for life this past week. He used his walker, had the support of some good friends, and summoned the strength that makes him so fine a man, and he did it. He walked that walk! Congratulations, Mike! To read his posting, see: http://miketerrill.wordpress.com/2013/06/10/crossing-the-finish-line/.

I recently saw a poem about running by a young person on the website Teen Ink. It seems appropriate to the occasion:
Running
By SycamoreTreeLand, Alamar Avenue, CA
The author’s comments:

This is a poem I wrote after my first cross country race of my sophomore year of high school. I was disappointed with my time, so I wrote this poem and it was like magic appeared on my doorstep–I felt so much better. It was then that I realized how hard I had tried during the race, no matter what my time was. I guess I actually did know what I was doing during my race–becoming a stronger person outside and within.

This pain is not for me,
I say.
This pain envelops me in nothingness.
The heat traps me in fumes,
Burning like fire,
Killing like a knife
That cuts into the patches of my lungs.

This pain is ready for me,
But I am not ready for it.
This pain is sprinting.
I am wobbling.
It is living
As I am dying –
Falling, then landing
Into what feels like relapse,
But really isn’t.

This pain is a painkiller,
Yet I am unaware of this fact,
For I am only thinking of
What life is like without this pain.
But this pain
Is the pathway to bravery,
Strength, focus.

This pain is my enemy
when spoken of,
But my friend within,
Living deep in my heart
Where the truth is not always clear.

This pain will lead me to the end.
And will bring me back to the beginning again.
Where the cycle repeats itself.

This pain never disappears,
But sometimes releases its grip on me
For just a moment,
When all the cells of my heart
Are focused,
Breathing,
Living
At last.

http://teenink.com/poetry/free_verse/article/135834/Running/.

The poet is a young woman going by the pseudonym Lizzy Halmne. She has a long way to go in life. Mike has a few more years and miles under his belt. His path may be shorter, but will draw on all he has. Both have hearts like lions. Thank you for writing, Lizzy! Way to go, Mike! May both of you fly on fleet feet wherever you are set and ready to go.

Star Trek Into Darkness

No need for spoiler alerts.

I had papers to grade last night, but I decided to see the late showing of the new Star Trek movie Into Darkness. I really enjoyed it and recommend it if you find yourself in a dark place in your life and want to feel good. I’m not going to say anything else about its plot except that it deals with dark subjects.

Most of the previews that preceded the movie were also about dark subjects: sheriffs with drug-abusing daughters (Longmire), Hollywood “fixers” who cover up deaths and wield baseball bats when trouble is afoot but ache to see their kids drawing closer to crime in the form of a much despised father who is just out of jail (Ray Donovan), and more. There were several apocalypse stories, including the world’s takeover by zombies in World War Z (Think of any Lord of the Rings castle attack with recently dead humans in place of–I’m not sure what you call the hordes in a Lord of the Rings movie) and Elysium (about class conflict in a sci-fi setting, by the maker of the really depressing movie about race conflict, District 9).

Even Superman’s new movie Man of Steel had a trailer filled with dark colors and visuals. The “light” subjects included the story of two out-of-work men (the actors playing them also haven’t made a really “feel good” movie in awhile) who intern at Google where they are hazed by the nerds and even take shots to the gonads (am I the only one who sees enough of that on America’s Funniest Home Videos?). Another “feel good” film was about four seniors doing their version of The Hangover, called Last Vegas. It might be okay for my age group, and I love Robert DeNiro in any movie, but, really? Will there be any new stones to turn over in Las Vegas if the men have more money? Can anyone say scantily clad women, gambling, drinking, and aftermath? Will you pay $7.50 or more to see Morgan Freeman dance?

My point is that I was not the only one experiencing dark days. These movies and TV shows have been in production for a long time before they were shown or previewed. People have been feeling the drift into darkness for a long time. I have felt it since 9/11. Perhaps you have felt it even longer.

Terrorism (domestic and foreign), war, genocide, diaspora, recession, world-wide depression, political instability, violence in the streets, burning or collapsing fashion industry factories, global warming, BP’s pollution of the Gulf of Mexico, earthquakes, tsunamis, floods, tornados, hurricanes, collapsing bridges, derailed trains, GMO foods, rising rates of death from cancers, school shootings, movie theater shootings, mosque shootings, bombings, hacking of people’s private information–pick your nightmare. There have been many scourges, and the themes of movies and TV shows reflect that.

I left the theater feeling better anyway. Because fiction sometimes takes us from the dark place. It restores our faith sometimes in our own initiative, our grit and determination, and our caring for (at least some) of our fellow earth denizens.

I cannot claim to have any super powers at all, but in the darkness of a theater, surrounded by the smell of popcorn I can no longer eat, watching the crew of the Starship Enterprise grapple with certain disaster, I get the idea I can handle my own challenges.

I’m not sure I am up to watching The Internship with Vince Vaughn and Owen Wilson (opening June 7), but movies aren’t medicine, not yet anyway.

Star Trek Into Darkness
2013 Film
8.3/10-IMDb
87%-Rotten Tomatoes
Star Trek Into Darkness is a 2013 American science fiction action film. It is the twelfth installment in the Star Trek franchise and the sequel to 2009’s Star Trek. Wikipedia
Release date: May 17, 2013 (USA)
Director: J.J. Abrams
Prequel: Star Trek
Production company: Bad Robot Productions
Genres: Action film, Science Fiction, Adventure film

In Sickness and in Health

liebster-award

One of the duties associated with having been nominated to receive a Liebster Award is that you should name others to receive it as well.

I have read that some have named a single blog while others name as many as 11. Today I am naming two:

http://sarahandycancer.wordpress.com

and http://happilyhomeless2.wordpress.com/.

Both are written by wives loving a husband through cancer. Around the world today there are millions of husbands and wives giving care to a partner through sickness.

I am not married. I was once a long time ago. I am soon to be divorced twenty-five years and was married for seven years before that. I am not fascinated by the condition of marriage. I did not destroy my wedding photographs, but I donated my wedding dress to charity, threw my wedding band into the Potomac River, and gave my engagement ring to my niece because I did not want to see it in my jewelry box any longer. I do not watch TV shows in which women say “yes” to dresses and shriek at family and friends for failing to make a wedding day perfect. I can be counted upon to smile and cry during others’ weddings, usually because I am a little disappointed that my own wedding day remains my happiest memory in a good life.

My husband left me. That is unusual. I understand that women initiate about 66% of divorces. http://shine.yahoo.com/love-sex/women-initiate-divorce-66-of-the-time-why-do-they-want-to-get-married-567068.html. This is ironic when you consider how much literature there is out there for women who seek to bring a man to one knee so that he will propose, she can accept, and they can dedicate their lives to the accomplishment of the best wedding anyone has ever attended.

Many of my friends who remained married, many of them happily ever after, are now in the process of guiding children through the last years of a college education, through the acquisition of a first post-college job, or into the bonds of matrimony. There have been times when I have envied them their finger-painted-art-covered refrigerator doors and their Mother’s/Father’s Day celebration breakfasts in bed, but I am not envious of their tuition bills or the prospect of planning and paying for the best wedding anyone ever attended.

I enjoy Pinterest.com as a way to pass the time when my mind is fried and my body will not relent at bed time. But I confess that I am saddened by the number of racy photos of brides in lingerie to be sent to the groom on the morning of a wedding to keep him focused on the prize, the photos of tackle boxes filled with mini-bar-sized bottles of alcohol alongside make-up and hair devices in the bride’s toolkit, images of high fives during a post-ceremony kiss, and the snapshots marked “need this photo” for our special day.

I remember my wedding day with (a depressing amount of) good will because of what was not happening. I did not begin the day reviewing a checklist of poses that the photographer had better capture for my album. I did not have, nor imagine for a moment that my groom had, cold feet. It never would have occurred to me to send him pictures to review prior to the ceremony. I did not need a shot of liquid relaxant to walk down the aisle because I was anxious about perfection eluding me. I did not usher friends in front of the camera for lots of “must have” memories. In fact, I found the few photos my photographer staged for us kind of silly.

I just got up, got dressed, and walked down the aisle on my dad’s arm and pledged love to someone who was a friend and a lover. Of course, things did not end well. Maybe I should have cared more about the details. I suspect that is not what makes marriage work either.

I do admit to being envious of the brides who got it right. I read Sarah and Andy’s story because they read The Princess Bride to each other while Andy recovered from surgery following his diagnosis with stage 3B gastric cancer. When they wed they planned to have a family. They found themselves unable to have a child and unable to adopt one. They exchanged the dream of a an art-covered refrigerator door for late-night dashes to the ER following the removal of Andy’s stomach. Despite all this, every time I see one of Sarah’s postings show up in my Reader page on wordpress.com I smile at their photographs of post-marriage kisses taken in sickness and in health. I find myself rooting for the latest posting to disclose a landmark in Andy’s recovery. It’s hard to be cynical in the face of a good love story. Sarah makes me believe in their dreams.

In the blog Happily Homeless 2, Handsome Husband is not Every Woman’s dream. He’s already divorced, a recovering alcoholic, raising children. He remarries, this time joining his life with that of a woman raising children of her own. They seem like hopeless romantics. Both are so open to remarriage and the difficult task of blending families. It’s reassuring to know that once married, many men and women remain open to doing it again. But men seem a little more open to it than do women, ironic when you consider how men are perceived as needing to be dragged to the altar:

The perceived benefits of divorce differ by gender. Women were far more likely than men to say that having their own self-identity was a top reward….
…….43 percent of women said they emerged from the split against remarriage.
Only 33 percent of men said they wouldn’t remarry.

http://papers.ssrn.com/sol3/papers.cfm?abstract_id=713110, quoted at
http://shine.yahoo.com/love-sex/women-initiate-divorce-66-of-the-time-why-do-they-want-to-get-married-567068.html.

In the case of Happily Homeless and Handsome Husband, you have two people who believe in marriage (and each other). They also deal with cancer. But, unlike Sarah and Andy who face it together while young, they deal with it at the end of a twenty-three-plus-year marriage while young-at-heart. I have not gone back yet to read the earliest entries in Alison’s blog. I found it recently and have read its latest chapters. Instead of talking about a perfect wedding, Happily Homeless describes a different type of ceremony. The gown is a hospital gown worn by the groom. The best man and other attendants are the couple’s children. The flowers are sent by well-meaning friends. The family and friends are there to say good-bye to the groom. The bride is dealing with the pain of life without him. I cried as I read of this couple’s happy ending, too. And I envied them even though they also walked a painful path because they held on so tightly to each other until parted by death.

What makes me nominate these two blogs for the Liebster Award is that the award and these two blogs are about caring. The bloggers discuss what happens when life gets tough and your partner needs you in ways you don’t need your partner. They speak of how you sometimes have to find balance because suddenly the ground beneath your feet is shifting. They tell tales in which no one gets by on fairy dust or magic. They are about the hard work in marriage. They focus on the relationship being built and maintained. They still have dreams and fantasies, but they have realities that test the fabric of their dreams and prove that dreams can be as tough and as flexible as rubber as it meets that bumpy road.

The stories of caregivers are what you cannot foresee when you watch TV shows about brides choosing the right dresses and bridezillas picking the wrong battles. Some think the battle is over when someone’s put a ring on it. Some think that they need their liquid courage to walk down the aisle. Some think that the beginning of a honeymoon is the beginning of life lived happily ever after. Some think marriage is about the right poses in a book of memories. Some begin the next day and days after it facing a whole new set of challenges. And the truly heartwarming thing is that some people make it! They (men and women) take their vows and find ways to keep on living them:

I, ____, take you, ____, to be my (husband/wife). I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.

I smile at weddings because they are the start of a venture that holds the promise of something wondrous. My heart may still ache when I think of loves that fail, but it is healed by the stories of loves that last when health is failing. I am grateful for the chance to observe people cling to each other proving that the finest in us is what counts, not the finery that surrounds us.

Facing the End

I am a positive person. I think sometimes I am a little bit of a Pollyanna. I am also getting old, which is why I know who Pollyanna is. Anyway, one of the most inspirational blogs that I read is by a man who is running out of options and time. His world is filled with pain. Maybe you are not in a positive place right now. Maybe his blog is not the right thing for you to read. But, if you are up to it, Mike is telling it like it is for him. And I can be positive about what I am learning from him even though I know he is facing a fate I don’t always feel I can even contemplate.

If you’re up to it, check out Living Life to the Fullest from the End Stage: https://miketerrill.wordpress.com/2013/05/15/when-it-all-comes-crashing-down/comment-page-1/#comment-181.
I think Mike inspires like no one else when it is time to put away the juicing recipes and stop buying antioxidants and think about the fact that life is short but the memories you make with and for others can survive what you cannot.

I recently was nominated for a Liebster Award. It’s about caring. So I’m going to pay it forward by asking that all the many caring bloggers and visitors who stop by this page now and in the future say a prayer or hold a thought or take a leap and read what Mike has been saying. Because how a man lives is also about how a man dies. And this man’s struggle has touched my heart.

Tick Tock

I have a friend who likes to tap her watch and announce, “Tick tock,” when time is a wasting commodity. Tonight I spent a couple of hours reading several blogs from start to finish. Was that wasted time? I had papers to grade. I had other work to do. There were chores that I could do. However, I wanted to check in with some of the people I have “met” on line.  I follow a number of health-related blogs. Many of the writers have received a diagnosis of cancer. Some are providing care to family members with cancer. Some are caring for family members. Some are on the “other side” of life crises and reflect on their experiences while looking forward to futures they hope will one day cease to unfold in the shadows of trial and terror.

After reading several of these blogs this evening I asked myself why I was spending so much time reading blogs about human suffering when I have a couple of boxes of books within arm’s reach that might help me escape the shadows of my own health scare. I could thrill to a romance. I could unravel a mystery. I could race against time with someone committed to averting a disaster. For most of my life I have read a novel a week, sometimes a couple novels a week, sometimes a couple of novels a day. I have not read a novel in months. I like to follow a series. I have dozens of sets of books on my new IKEA bookshelves. I have every Jack Reacher novel by Lee Child. I have four series written by Charlaine Harris. I have J.A. Konrath’s series about the detective Jack Daniels. I have Kim Harrison’s series. I read Catherine Coulter. I think I have every book by Jayne Krentz, Jayne Castle, and Amanda Quick (all written by the same woman). I read Janet Evanovich’s Stephanie Plum series. This started when I was a kid. I still have nearly every Nancy Drew, Judy Bolton, Cherry Ames, and other children’s series I ever began reading.

My point is that when I care about a character I want to follow the story no matter where it leads and no matter how long it goes on. Yet I now have books from some or all of these skilled storytellers that I keep picking up and setting down because . . . . I have been trying to finish that sentence tonight.

Tonight I decided to stop questioning why truth is so much more intriguing than fiction. It is fascinating because it is authentic in a way that fiction rarely can be. The stakes are always real in real people’s lives. And, even when the writing is rushed or inartful, its lack of art makes up for misspellings and uncalculated revelations. Ever since issues of life and death became real rather than imagined in my life I want to know how others are handling their challenges.

In reading fiction I let someone take me into a world that is an escape but can be a lesson. I forget my troubles. I let them take me places I cannot imagine until they lay out a scenario. The real life stories of people do that, too, but I cannot escape to their worlds. Instead, they come into mine in a way that a fictitious character’s life cannot. When I say I care about them I mean that I do care. We may not be friends. I will never meet them. We may never even exchange names. But they are real people and I do care about what happens to them.

The bloggers are relating their real life events, but I am not a big fan of “reality TV.” I do watch America’s Funniest Home Videos because many of the videos are funny. But I get up and walk to the next room when I am watching a string of groin injuries or some adult’s recording of children engaged in risky activities for yucks. I like best the animals that defy explanation, the children that stun us with their natural reactions to events, and the seemingly infinite capacity of some to bounce back from adversity with laughter. I cannot bring myself to watch the scripted, edited, and creepy accounts of people who are no longer satisfied with fifteen minutes of fame but need to capitalize on their own idiosyncracies by making the decision to go out to dinner into high drama and reducing the decision to marry or have a child to a farce.

Every time I hit the “Like” key on a blog written by someone in the throes of a real life crisis I feel guilty for sending a message that I am finding this experience in any way pleasurable. I do not want to be a gaper on the highway of others’ health and life hardship. But, it really is not pleasure that makes me hit that key. I wish wordpress.com would add a new key to our blogs that reads: “Care.” I want the bloggers whose lives I am now following to know that this is an experience unlike what sometimes motivates me to read fiction or watch reality TV. I am not a voyeur that watches and thinks, “How screwed up is that person’s life?” I am not watching and thinking, that was “fun.” I think the biggest difference between this medium and reality TV is that the people whose lives I now get to observe are not “characters.” They are people to me and I like them. To borrow from Sally Fields, I really like them.

So, as the hands of time wind forward, I will not regret time spent reading others’ blogs. It has never been wasted time.

Here’s only a partial list of the blogs I follow and whose authors inspire me:
A Broken Vagina
An Only Child’s Journey Into Parent Care
Cancer: My Journey Back to Health-Kicking, Screaming & Whining the Whole Damn Way
Cancerinmythirties
Carolynoneal
Considering the Lilies
Denise4health
Derailing My Diagnosis
Fierce Is the New Pink
Heavenishereandnow
Iamnotbrave
It Happened to Me . . . Seriously
My Daddy Is Dying
One Bad Boob
Regrounding
Sarah And Andy Live
Tangling With Cancer
The Big Scary ‘C’ Word
The Misfortune Of Knowing
The Other C-Word
Tropic Of Cancer
Walking Faster In Philly
That just scratches the surface. When it comes to writing about real life, there are amazing people out there. Tick Tock, I am heading back to reading.

Dust “Mights”

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Look, Mom, no boxes!

Look, Mom, no boxes!

I have many “things.” We’re talking two rooms of the house are filled floor to ceiling with boxes filled with things. I have been trying to go through some of those boxes to get rid of what is no longer necessary in my life. Most of those things are not necessary at all, but very many of them still give me pleasure–when I get around to looking at them.

Before my diagnosis with cancer I had to clear a pathway to the windows in both of my storage rooms so that someone could open and shut the windows while painting their frames from the outside. I moved more than twenty boxes into the hallway to make way. The painters never did get to me in 2011. In fact, they did not get to painting my windows until fall of 2012. I have been walking past those boxes for all of these months.

There were times when I considered dragging them back into storage, but never did. I was told not to overdo it after surgery. I was too weak and tired during chemotherapy and radiation. I was in pain after radiation. I was too tired to care about the task or too busy with work or overwhelmed with life events.

In December I bought four bookcases because some of the boxes contained books. The unassembled bookcases from IKEA joined the boxes in the hallway. From time to time I sat down to watch TV and went through boxes discarding old papers. I rarely watch the TV any longer. It is something I turn on in the background while I read students’ papers or work on projects. As a result, it got to the point where new boxes joined the original boxes. Most of the new additions related to my recovery. There were special cushions I bought when the radiation burns around my hips made it painful to sit down. Even now when I am told I am cancer-free I am reluctant to toss them out. There’s a cane I bought when my joints hurt so bad that I feared I might fall. I never used it. I couldn’t even figure out how to adjust it to my height when I needed it. There were boxes filled of get well cards. My friend Roberta sent me a card every few days for months. I bought many books on dealing with cancer. They joined the towering evidence of my inability to clean house.

This month all of that changed. I assembled the bookshelves and they now line one wall of my office/dining room. There was plenty of room for the books. There are no more boxes in the hallway. I have thrown out mountains of old papers, even parting with things that evoked strong memories. I did not throw out everything. If that happens, it will be a sign that I have accepted my mortality can no longer be held at bay.

Some people have a bucket list. There are places they want to go and things they want to do before they die.  My friend Roberta took her sister to the Grand Canyon before her sister died. I understand that the trip did what it was supposed to do. Roberta’s sister was at peace. I am not the type to jump from an airplane or climb a peak.

My dad had a shopping list. He always said that he would live as long as he had a shopping list. We never thought the list would end because he wanted the best he could find: the best belt, the best coat, the best umbrella. My dad loved to say that it only cost a little more to go first class. My dad died within 48 hours of being diagnosed with acute pancreatitis. When he was gone we found lots of reminders of his affinity for lists. He had written inside of every closet how much paint and time it took to paint the room. We found a list of his favorite jokes that he would tell at parties. He used his own code for some of them, but we knew every one of those jokes by heart. In his calendar he had written, “Iron suits,” for every Saturday for the rest of the year. We found index cards and notebooks in which he had written his own clothing sizes (as if one walks around shopping and cannot recall one’s own sizes). We never found a single shopping list. I think he should have warned us when he finished it. As I saved a few of my dad’s old lists, I could not help but think of what might have happened if my dad had gone to the hospital that last time with a shopping list in his wallet. Might he have survived?

The decision to clean house must be a sign that I am getting older. It seems like my mom started to obsess about such things in her fifties, too. It has become a familiar refrain that she asks us when we three kids would like to come over and help her empty her house. We usually do what she asks of us, but I have noticed that none of us are working on this task. Maybe we are behaving superstitiously.

As I went through my boxes I was reminded of many happy times. I found the birthday card my Aunt Arlene sent me in which the recipient was referred to as “buzzard breath.”  I laughed over that card before I finally parted with it. For many years my aunt has sent me insulting birthday cards and I have usually returned the favor. Today is her birthday. I sent her a card with a picture of the mighty redwoods in California. It said that they were reminders of someone’s long ago efforts to cover the earth with majestic trees–and thanked her for having done it. It will probably be the last time I do this. I tried to call her today to wish her a happy birthday, but she never quite figured out who I was and I never quite got around to the birthday wishes. She will not long be with us and I cried when the call was done. I am not sure what she might have left to accomplish here on earth, but I am glad that my mom made it out to see her sister this week and will get to see her again tomorrow because the happiest memories are not cards. They are time spent with people we have loved.

I found a folder of compliments from people with whom I worked in the long ago past. When I first started work as an attorney I often struggled to figure out what people wanted of me. I sometimes worked with people who challenged me not only to be my intellectual best but to exercise my emotional intelligence. I used to need that folder to keep me motivated when it seemed that I was not quite mastering the lessons someone was trying to teach me. I no longer need someone else to do that, but I smiled as I recalled some of the people who wrote those compliments. I tried to throw the memos out, but in the end I saved them again because I might want to look at them again and recall how I learned to be a lawyer.

I even found a folder containing some old love letters from my ex-husband. I usually tell people who ask me for relationship advice that I have not got the slightest idea how to make things work. I point to my track record as proof of the truth. But I was reminded that there was a time very long ago when I thought I knew my heart and his. I might have known my own, but I might not have known his. Reading those cards and letters again reminded me of what might have been.

The thing about my boxes of stuff is that they do more than collect dust. They periodically remind me that life is a journey to be treasured. It tests me sorely at times, but it enriches me as well. It is a record of what was and what might have been. Sometimes those dust “mights” are what I need to keep going.

 

New-Me

I attended a business/social event this past month at which I had to reintroduce myself to several people who have known me for years but had not seen me in some time. I recognized them as soon as I saw them. Their faces bore familiar landmarks that could not be dismissed even after as many as ten years had passed. The slope of a nose, the shape of a moustache, the slightly more deeply etched laughter lines, and the curve of a lower lip were recognizable from across the room.

When I approached these long ago colleagues each of them seemed at first uncertain about my identity. Eyebrows met in confusion. One head tilted a little to one side, as if trying to catch the lilt of a distant tune. Another turned his ear toward me, prompting me to say my name. One of them stuck out his hand even before he “placed” me. His smile just grew broader when I said my name.

I had not imagined that I might not be recognized. I have been to some of their homes. I have traveled with some of them for business reasons. I have worked with them. I have not forgotten them and they had not forgotten me. But they could not place me in the legion of people whom they have met, worked with, and known.

This is not the first time that I have been called upon to jog another’s memory of what I imagined was my unindelible place in it. It has been about 18 months since my diagnosis with cancer. I have had to reintroduce myself to some people who last saw me only one or two years ago. I recently waved to several former students and they looked at me without seeing me until I said my name. Then they smiled and admitted they had not recognized me.

I lost some, but never all, of my hair following my treatment with chemotherapy. It used to be dark blonde and cut in a chin length bob. It was that length, although sometimes lighter, nearly all of my life. When I was very young, my hair was very light in color. My dad called me “hayhead.” There were reddish highlights as I grew older. My Grandpa Kayo had those same red highlights in his moustache and beard, so I was quite comfortable with them. There were times when I lightened or brightened or even darkened my hair, but it was not all that radical a change after I stopped using “Sun In,” a hair lightener that combined lemon and sun to return me to my “hayhead” blonde coloring in my teens.

Since chemotherapy, I have worn my hair short and its color has faded to a brown. It has a wave that appeared after treatment and was not there before. I have traces of silver across the crown that are new and have been mistaken for “frosting.” So, yes, my hair is different.

I used to dislike these changes. I have become accustomed to them. My hair has never been softer to the touch. I wash it and do not worry about it. There is no need for cream rinse or gel or spray to manage it. I see Mariam to get it cut once a month. She snips it into a short cap and tries to talk me into teasing it with my fingers and a little gel into a spiky cap, but I cannot be bothered any longer to mess with what “nature” (if there is anything natural about chemotherapy) has given me. I no longer use a comb to regiment its strands. I run my fingers through it and forget it.

I have no idea what has happened to my several hair dryers or curling irons or rollers. I finally assembled all my barettes, headbands, scrunchies, clips, and other devices into a shoebox. I am thinking of mailing them off to my niece’s “tweenage” daughter on the theory that she might reinvent some use for them. They are vestiges of the old me for which New-Me has no use.

When my hair was falling out, sometimes a strand at a time, sometimes in small tufts that somehow avoided leaving me with bald spots, I learned to stop touching it at all. I started sleeping with a neck roll instead of a huge pillow. The roll supported my head without putting pressure on my hair. I still find strands of my former mane when I wear what I think of as my “chemotherapy” sweater. I detach them carefully because the hairs that remain have become entwined with the garment’s gray woolen strands. I set them aside or toss them in a handy trash receptacle. Little by little I have shed the old me.

This week a former student met with me to discuss her job search plans and she asked me what happened to my red hair. She spoke of the red wig I wore when my hair was quite thin but starting to return. I also had a red-gold wig and a very blonde wig that I never did wear out of the house. I don’t wear the wigs any longer. My hair may have changed, but it is back, and I still recall the day the wig fell off during a lecture and I had to grab it and plop it back on my head. I may be unfamiliar to some who have not seen me in awhile, but I am more comfortable in my own “skin” than in anything else.

I do not think I look all that different now that I wake each morning and look in the mirror at the New-Me every day. But this past week was a reminder that, even when it seems that nothing much has changed, what is happening in my life is making changes. My body is different. My hair has changed. My outlook reflects new concerns.

Many of the changes have nothing to do with cancer. I turned 56 in the last week. Age takes its own toll.

I read the blogs of many people who have been treated for cancer. Some of those people speak of their scars with horror, sadness, or misgiving. They have often experienced radical surgery that forever changes the landscape that was once familiar. My scar runs from side-to-side across my body, but I cannot any longer see it. Dr. D, the surgeon at Advocate Masonic Medical Center did such a superb job that the staples came out within five days after surgery. Long after the incision had healed I had difficulty feeling anything within several inches of the site. The nerves have reconnected and I am not feeling visibly scarred by surgery.

Not that treatment has left me physically unchanged. In addition to changes to my hair there are changes from radiation and chemotherapy that linger. There is pain. At times I have thought the pain had etched scars in my life far more disturbing than the scars visible on my body. It is not a good thing to have pain every day.

Ever since I decided to stop recording my pain level a few dozen times a day it has ceased to define the New-Me. It is there, but it is becoming like my missing hair dryers. I no longer feel the urge to snap at others when I am feeling pain. I have learned to unclench my jaw and let the pain radiate through and out of my body. When the pains are sharpest and seem to gouge into the core of my body, I wrap my arms around my own body and rock a little. If the pain is bad enough to make me cry, then I let the tears well up and tell myself that those tears will carry the pain right out of me. It comforts me to send a message of love to that part of me that seems foreign and wrong. And, luckily for me, my pain is not sustained. At this stage in my recovery, my pain is episodic. I believe that it will keep abating. That belief sustains New-Me.

I used to hate the strangeness of my post-treatment body to the point where I hated the smell of my own body. I really do not know if that sense of alienation has disappeared because chemicals have left my body and returned me to “normal” or if I have become more accepting of the changes that have taken place. I am relieved to have gotten past the feeling that I was a stranger to myself.

Soon I will get past the sense that I am a stranger to people who have known me. New-Me is someone I have come to know and like. She just takes a little “getting used to.”

Etiquette

DePaul University has invited me to obtain a certificate in diversity skills. The first segment of the certificate program deals with the “etiquette” of dealing with disabilities. Having been terminated for having cancer (arguably a disability), I am very interested in anything the university has to say about the subject, including anything it has to say about doing it politely. This is part of the email sent to me:

“Dear Colleagues,

“The Office of Institutional Diversity and Equity is pleased to announce the launch of B.U.I.L.D., a professional development diversity certificate program available to all faculty and staff.  B.U.I.L.D provides participants with the “building blocks to an inclusive campus”, by:

  • Building multicultural competencies
  • Understanding differences and how it impacts the workplace
  • Inclusive excellence
  • Leveraging Diversity and building Leadership capacity
  • Developing measures of success

“The B.U.I.L.D. Diversity Certificate program reflects DePaul University’s commitment to create a learning culture that values diversity and inclusion. This certificate program helps participants develop cultural competencies, offering the tools necessary for linking diversity to organizational and work performance, and connecting the University’s Vincentian mission of dignity and respect for all individuals to our core operating business principles. This program may be completed within 18 months, and offers a full range of required and elective courses. Participants will have the opportunity to complete a “capstone” practicum project as part of the certification.

“The first available workshop to count towards certificate completion is Disability Etiquette, Awareness and Understanding which will be held on Tuesday, February 12, 2013. The training uses lecture, discussion and cases, to guide participants through disability etiquette & awareness issues from a social justice perspective. Examples of appropriate actions, language, etc. will be reviewed on a disability specific basis.”

I am concerned about the word “etiquette.” Education that averts discrimination on the basis of disability is great. Education that merely makes it more polite is not.

I attended a meeting this week (yes, we finally did have a meeting) at which one of the attendees said that when his students make certain mistakes he describes them as “retarded.”

I immediately said, “I think you should sign up for next week’s seminar on the Etiquette of Disability.” I sometimes wish that the tongue was not as nimble as the mind. As quickly as I said it I was thinking to myself, “Great. Things are just getting back to ‘normal’ and I have gone and used the ‘D-word’ in a meeting with a supervisor present.” But, honestly, what kind of wordsmith uses that word? I even considered referring to it here as the “R-word” because I find it offensive due to a dozen disrespectful uses of it that come to mind whenever I hear it. I decided to spell it out because it was critical to making my point.

His reaction surprised me. He said, “I can’t think of a better word for that behavior.”

The man obviously knew nothing of my situation. There was zero sensitivity to the plight of one who has been found to be disabled and sidelined for it.

It reminded me of a time in my career when I attended a lunch meeting of an organization to which I belonged. During the lunch, one of the members talked about a legal issue involving people who claimed that a facially impartial employment practice had the practical effect of depriving senior employees of credit for service that they needed to qualify for certain pension benefits. She said that a member of her team had described the potential claimants as “pension n******.” I do not use the “N-word” because it is impolite but, more importantly, because it is one of those words that reverberates with hatred and disrespect. No matter how you intend it, the word’s many nasty connotations travel with it.

The room got pretty quiet–even more so when the speaker realized that the audience was shocked. To this day I think she, like my coworker who used the “R-word,” just did not understand how words can hurt. I do not excuse either of these people. I just allow that they may not have intended the offense they caused.

Back at the meeting in which an attorney used the “N-word,” the entire incident became so much worse when a senior member of the organization said, “Thank goodness we don’t have anyone of color in the room.”

I looked up into the eyes of the African American colleague seated across from me and shared the moment when we realized what the speaker did not. There was person of color in the room. And what had already been an awful incident had somehow become worse because someone we respected was treating this like an off-the-record moment. We were about to go on as if nothing serious had happened. What goes on behind closed doors is, after all, what is most pernicious. If I know who my enemies are because they toss their fighting words in my face, then I can arm myself, can’t I? When they cloak ignorance and disrespect in polite words or conceal their motives, well, I have to box a shadow and it is tough to wound shadows. Even if you turn light on shadows they disappear, don’t they?

On another occasion in my career I sat at a board room table with a bunch of men old enough to be my dad or grandpa. I was going to work on a lobbying project for their industry. I sat beside a senior attorney who was serving as my mentor at the time. During the meeting one of the attendees drew the symbol for Batman but with the bottom of each wing depicted as a breast. Beneath the image, he wrote “BATGIRL.”

The men at the table passed it first to their right so that it came closer to me. It came close enough that I managed to see it. I was in my thirties at that time–old enough to school my expression and betray no reaction. Eventually someone realized that I might see it and the paper began to travel to the left. All the way around the table there were various reactions of humor, but, even when there was no visible reaction, the men passed the paper. When it reached the man who sat beside me, he alone shook his head “no” and looked sternly at the man who had passed it to him. Then he turned it over and went on speaking.

He never looked to me for approval. He did not raise the subject after the meeting and ask me if I had taken any offense. He did not apologize for our colleagues or his gender. I appreciated the way he handled it because, at that table, he, like me, was a service provider. He had to think about his relationship with our client as he chose his reaction. But he used some of his “intellectual capital” with the client that day to do the right thing in the situation. He trained by example.

In the many years since that meeting I have taken certain stands that have cost me. There also have been some times when I took another approach and let the moment pass. On some of the occasions when I have spoken up I have suffered consequences, including consequences that affected my income and my stature in the workplace. On some of the occasions when I have been silent I have felt far worse than after having been singled out for a reprimand for refusing to go along with the “flow.”  If I could get back certain moments in my life it would not be to relive my youth or take a different shot at first love or choose a less travelled road. If I could get back certain moments of my life it would be to redeem myself by expressing myself more forcefully. I wish that I always had the guts to protest injustice done in my presence.

Anyway, when my colleague this week defended his own use of the R-word, all I said was, “Maybe you should sign up for that class in Disability Etiquette.”

Everyone who offends does not intend to do so. All of us face situations in which we struggle for the best way to express a reaction to another’s offensive language. A few lessons in etiquette will not necessarily coach others to take their ignorance behind closed doors. It may coach them to choose words more carefully so that people used to being slighted can live without having to deal with the unintended indignities they now encounter.

What would really help though would be classes that educate about the reasons why healthy and successful businesses succeed by stamping out discrimination in their public and private communications. I am hoping that DePaul’s new seminar and staff certificate program will do that, rather than merely make people more polite in public settings. It is as important to wrestle with bias behind closed doors as it is to do so in public.

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