Not Down Or Out

It could be worse. I might not be laughing.

Category: Cancer and Employment

Thank You!

Today is the sixth anniversary of my cancer surgery. I mailed a note to my oncologist yesterday to thank her for first off re-staging me from a stage III to a stage 1 with complications. When you go from having a 45% chance of being here in five years to something more like 80%, it changes your attitude. She was a kind woman, very patient, good at explaining, and she gave me good advice about taking prophylactic steps to keep cancer from returning.

The treatments were tough. I still think about my horrible Christmas in the Hospital when I feared I might die of the infection I got at the end of my six rounds of chemotherapy and weeks of radiation. I am happy that it was not necessary that I also go through the internal radiation the radiologist originally recommended. I think that would have tested even a positive attitude.

I am writing to thank you, too!

I got through the surgery, treatment, and recovery because of family and friends for whom I remain eternally grateful. My mom, my sister Kathy, her husband Jeff, brother Danny, his wife Lisa, nieces Maureen and Lisa, Aunt Joan, cousins Susie, Jerry, Gail, Al, Michael, Alice, Pam, and Courtney were there for me. My sister Kathy came out for a month to take care of me while I recovered from treatment. My brother Danny flew out to take me to chemotherapy. So did Maureen and her now husband Justin. Susie listened to all of the phone calls in which I weighed treatment options and worried about the side effects they brought. Alice and Michael sent me the cool yukele stylings that cannot help but make a person smile. I received the benefit of many calls and hugs, and prayers. And it is not lost on me that many of my family members had already seen our beloved Steve through years of cancer treatments that did not end as well as mine did. Steve was so strong. He made all of us stronger because of how he was such a loving man through trials that I can still only imagine.

Barb was there at the hospital with me after my diagnosis and she was with me on the day I met my oncologist and heard her advice and words of hope that things might not be as bad as I had feared. She took me to chemotherapy treatments and was with me for some of the dark days of treatment. She has earned her place as my best friend forever by sitting beside me and letting me talk through my reactions to some of the life-changing events I experienced. She knows I value her friendship and love her.

I have wonderful friends. Dominique came to see me in the hospital when no one else could. She brought me a toothbrush, toothpaste, and a comb when I was in so much pain that I thought I might die of my infection. It was the first time in days that I felt human. She brought her little machine that applied some kind of bio-feedback to my many scars and burns. She gave me probiotics that helped me recover from the chemotherapy. She was a great source of comfort that life would get better.

I am grateful to Mary who sent me money to have my apartment cleaned while I went through treatment. Like Susie, Alice, Barb, and Dominique, she was one of those rare people who could talk with me about the enormity of a treatment plan that leaves the subject in a scorched earth condition. My oncologist said that there were two types of patients; those who don’t want to hear it and those who want to talk about every aspect of it. We know where I fit in.

Roberta, how many times have you come to my aid with your thoughtful calls, emails, visits, and gifts of good cheer? After you and Mary recently showed up to sort out my apartment after I survived the May 2017 flesh-eating infection, I think it is possible to have both cancer and a flesh-eating infection and still be the luckiest person I know.

Paul and Gladys, you were always dropping me a note or picking up the phone to make a call. Paul, I still remember when you offered me some help with medical bills. That never became necessary, but I still remember thinking what a nice crazy that was. You are a lot of fun at a party! You bring it with you whereever you go.

I am grateful for Sue who came to visit me while I recuperated. She can sit down in a chair and take your mind to a far better place and leave you smiling. Great medicine.

I had some powerful people praying for me. Kathy had her group in Maryland. Kim Marie was on the job in Florida. Joelle did her share of heavy lifting on prayer as did all of my mom’s friends in EGV (Irma, Dee, Maggie, Jack, and Ollie). So did Rick and Karen. Diane, I feel I have known you forever and am so grateful to have leaned on your faith, too. Gladys and her novenas came through for me!

It hurt when the law school for which I worked terminated me for being diagnosed with cancer. But I got a lot of support from people there. I am grateful to Moses for not doing the same. Some of my favoriate students were people I met while going through the tough times of dealing with cancer in my life: Joelle, Millie, Joy, Josh, Tracey, Dayna, Djenane, Brian, Kim (and her mom), Russ, Anne, and Karen, to name just a few. The people at my other school, especially Carrie and Chanita, also were patient and supportive. Their support meant so much to me. That’s a fantastic group of people.

I have to thank the friends I made while going through treatment, too. Rodney, our talks and lunches were a blessed distraction from the every day grind of life. You made me laugh. Chicken and waffles may not be my thing, but we’ll always have chicken with quinoa, the enchiladas and brownie pie at Chilis, and the Greek buffet at Reza’s and the quest for cheap parking to remind us of our long conversations about things that matter.

So many people sent their good will from afar: my Aunt Arlene, friends Coundy, Steve, and Mark. Some of my former students wrote letters to the law school to protest my treatment. I feel so lucky to have so many wonderful people in my life. Lt. Alix even sent me her medal she received for being a Hometown Hero for active military service! Like I did anything to justify that by doing my best to get well. I never even met that brave and wonderful woman. Like heroes do, she would not even acknowledge my gratitude for her service or her undeserved and gracious gift to me.

I “met” lots of people dealing with cancer while I did through blogging. Mike is still alive–I think, but hasn’t been well enough to communicate for a long, long time. I pray for him, his daughter Anna, wife, and family. Laura Lynn died in October of 2016. I cry whenever I think of her incredible personality. We cannot say we ever beat cancer, can we? Not after we see some of the finest people we know succumb to it while young and with so much to live for. I honor the many no longer here and am grateful to see others still online when I return to my blog. Some of the bloggers who kept me going were:
Mike
Laura Lynn
Sheri de Grom
Knot Telling
YAPCab
helensamia
Tammy Carmona
liseybendy
bjsscribbles
oneanna65
Imarieallen
cindy knoke
Ingebird Scott
myeyesareuphere
tonitappcoutts
Dglassme
allbuthomeless
zippyrose
Cancer in my Thirties
banjogrrldiaries
ozhiggins
Puhili
Healing Eyes
doublewhirler
troutledge
beckyjmonroe
shelleydmason
mytholmroydmama
cowboylawyer
kymlucas
Carolyn O’Neal
iGameMom
thinkreadcook
lifesmanylesson
Denise McCroskey
Fierce is the New Pink
hermyleen
hypersensationalism

I could go on, but if it takes a village, I had one, an amazing one. And I remain, thanks to all of you and all of them, doing well!

Bad Taste in My Mouth

Thanks to free-graphics.com

Thanks to free-graphics.com

The saga of my termination by DePaul College of Law for having uterine cancer is about to come to an anticipated and unwelcome resolution. I spoke today with a representative of the EEOC who informed me that he is recommending that the EEOC close its file on my case and issue what is called a right to sue letter. I will have 90 days to hire an attorney to litigate the matter at my expense.

My summary of the report is necessarily brief because of the blog format, and that I must wait to receive the right to sue letter to see the actual conclusions before I may request a copy of the file under the Freedom of Information Act to learn more. This is my understanding of the EEOC investigation’s conclusions at this time:

1. My termination was not a violation of the Americans with Disabilities Act. According to current thinking, it was reasonable for the law school to terminate me after a positive test for cancer on Tuesday and before my Friday surgery because the university had a reasonable need to make sure I only missed one Friday class and I could not assure them sufficiently that I would in fact return Monday before my Friday surgery took place. I could ask to be accommodated for missing one Friday class, but apparently not for the weekend to see if I was able to return the following Friday.

It apparently does not matter that I was able to work the following week and every week thereafter. What matters is that no one could know before my surgery what would happen after it.

I guess the moral of the story with cancer is not to tell if you become sick. Had I given no information that my condition was cancer then the university would not have been so alarmed as to terminate me for having cancer.

Let’s recall what the person who terminated me put in writing:

Dear Cheryl: I was so alarmed to hear from Martha that you had to have surgery last week, but so pleased to hear from her that you are already on the road to convalescence! Please take care of yourself and don’t overdo it in an effort to achieve normalcy too quickly. You have been through a lot—both physically and emotionally—and you can’t expect to bounce back with no set-backs.
I understand that you are eager to return to your class this semester, and I know that your students would be delighted to finish out the semester with you; many of them have expressed concern about your health and enthusiastic appreciation for your instruction. I need to let you know, though, that after fully consulting with the Dean of Faculty, I felt compelled to make the decision to reassign your students to other LARC III sections. I sincerely hope that you recover from the surgery immediately, but it has been my experience that people in this situation always have slower come-backs than they anticipate. I had no way to hedge against the risk that you might return to teaching this week and then right away, or a few weeks later, find yourself simply unable to continue. My first responsibility is to the students’ learning and the smooth functioning of the LARC department, so I made the decision that increases the chances of maximizing both. I am sorry if my decision disappoints you, and I hope that you are able to understand the situation from my perspective.
We have every hope and expectation that you will be fully healed and able to teach in the Spring semester, and we will welcome you back in January with pleasure. If we can do anything for you in between now and then, please let me or Martha know. You have my every wish for your quick return to health and the fullness of life.

That letter doesn’t say I was terminated on the day of my surgery because I might not be able to work the next week. It says people with cancer always suffer setbacks and I might return and later prove unable to continue. If you cannot expect a law school to say what it means, then when should words put in writing matter, if ever?

2. Failure to pay the remainder of my contract for November to December 2011 until the following August in 2012 was just a “glitch.” The dean of the law school promised to pay me the remainder of my contract and then paid one last check and stopped. I was not paid until all my contracts for the academic year were completed, I determined the shortfall, and figured out which part of the university failed to pay me. But this was just a “glitch.”

And the reason it was a glitch and not intentional is that the university made a glitch in my favor in fall 2012 when it notified me that it would not offer me the class I taught every year for seven years but would pay me to teach a different class for the same money that semester.

In spring of 2013 it cut the pay for that replacement class in half. It now claims that the letter that offered me higher pay for fall 2012 was a glitch in my favor and the letter that cut the pay in half again for spring of 2013 was part of a preexisting plan.

If that does not make sense to you, then we are in agreement. The explanation does not rule out intention to punish me for making a complaint to the EEOC. I made more money before I had cancer than I made after the university received formal notice of my complaint to the EEOC.

The EEOC may take the position that the two “glitches” cancel out an argument of intent to deprive me of pay in 2011. I guess the lesson here is to not employ self-help. Had I not asked for payment before filing a complaint with the EEOC, not told the university I was filing, and waited to see if the fall 2012 glitch in my favor actually occurred, then it might not have occurred and it would have been difficult to show any glitches occurred. I would then–possibly–be able to show intent to deprive me of pay.

The fact that I was uninsured and needed my income to pay medical bills and that the delay from November 2011 to August 2012 caused me financial hardship is irrelevant. Money paid eight to nine months after it was due was paid soon enough to rule out discrimination.

The fact that I was declared unreliable and deprived of the opportunity to work is of minor significance to anyone but me. It appears that people paid to stay home miss nothing because the opportunity to work is not itself a right. Have you ever worked really hard for less money than you deserved to be paid and been proud of your work? Well, then you may understand why being deprived of my work when I was dealing with a cancer was painful to me, whether or not I was eventually paid to stay away.

3. No retaliatory intent or actions. The university revealed to the EEOC a preexisting plan (not shared with me even as of this date) to cut adjuncts to one course per calendar or academic year–which ostensibly explains why I was cut down to one class per semester after my diagnosis. I am not convinced this was the preexisting plan, but will have to see the file to learn more.

Additionally, while some witnesses overheard and reported statements that may have indicated some negative feelings toward me by the supervisor who terminated me and disparagement of my reputation to others at the university, that was “he said/she said” testimony and not sufficient for the EEOC to pursue further.

I wait now for the official letter to confirm my understanding of the findings. And I have a bad taste in my mouth. Sometimes what people do to you after you are diagnosed with cancer feels hard to bear, too.

But all of us who have faced such a diagnosis learn we are stronger than we thought. Cancer has tested me in many ways and I wake up every day since my diagnosis dealing with things that I never imagined would happen. Disappointment in the behavior of some people and institutions that surround me sometimes seems to go with the territory.

What will see me through this situation is the strength drawn from the other people and institutions that are there to lend an ear, a shoulder, a hand or a smile during the dark, dark days that have followed my cancer diagnosis. I appreciate everyone who has kept my faith in the goodness of people alive during the last two years. Thanks to you, I will never be down or out.

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.

Checking In

Back at the hospital

This morning I went for my six-month exam. Other than fatigue from having survived a swift move, I have been feeling well. In late February/early March. the daily, serious pains associated with radiation cystitis abruptly stopped. In June I determined that the other side-effects of cystitis–distress and incontinence–were well behind me. I stopped taking the Oxybutynin that had been prescribed for me. My bladder and bowel seem to have healed from the effects of chemotherapy and radiation.

I have had several “clean” pelvic exams and tests for cancer cells. My last scan was June of 2012. It showed no signs of cancer. In October it will be twenty-four months since my hysterectomy. In December it will be twenty-four months since treatment ended. I was thinking there would be a scan and blood tests, but there were no tests today.

My oncology team wants me to undergo surgery to correct a pre-hysterectomy hernia. The surgeon who originally diagnosed my cancer was going to repair it as part of my hysterectomy, but he ended up having someone else perform the surgery. That doctor did not touch the hernia. But it was in the way of his reaching my lymph nodes. As a result, no lymph nodes were tested–which explains why my chemotherapy and radiation treatments were “adjuvant.” They addressed risks unknown. I learned that the scans also can be confounded by the hernia, and that my radiation was more extensive because of the state of my “habilis.”

Everything looks good right now, but, if cancer were to return, everyone would feel better if things got “tidied up.” There’s no question but that I would like to get this addressed as well–EXCEPT–I do not have health insurance, I do not have the money to pay for this surgery, I am about to start school and cannot imagine undergoing surgery during “school time,” and the very thought of checking in to the hospital after my December 2011 experience there is out of the question unless it would save my life.

I am returning this week to teaching at the law school that terminated me the day of my hysterectomy. The law school is facing declining enrollments and has decided to cut the compensation paid to adjuncts, like myself, by 40%. At the same time, it has increased class size by 25%. The school has conducted its own internal investigation of my case and has cleared everyone involved of any breaches of university policies.

I suppose that means that the school would support my termination a second time if I underwent surgery–even if my surgeon said, “You can return to work next week.” That’s what the surgeon said last time.

The EEOC is examining my case now. I would like to wait for the results of that investigation before chancing fate on the subject of job security. As if an adjunct has any job security.

The Affordable Care Act will go into effect this fall. I would like to wait to see whether I can afford insurance when the new exchanges open in my state. I might have new options for treatment at a hospital that does not scare me.

The doctors think the charity that covered so much of my post-surgical care would agree to pay for this surgery if I appealed to it. That will take some time.

The doctors want me to go now for a mammogram. My cancer was estrogen-related. Some breast cancers are estrogen-related. So, I’ll do that. My maternal aunt died after more than a decade of dealing with breast cancer, so I will have the test.

My weight had dropped somewhat. My blood pressure was much better. I’m only taking a water pill for that. The doctors put off until my next check-up an ultrasound of my legs that might rule out varicose veins as the reason for my sometimes swollen right leg. No one else reacted when I mentioned the possibility of lymphoedema–which means nothing. I know that it could be the reason for my swelling from reading the excellent blog http://lymphnodetransplant.wordpress.com/. Check it out if you have unexplained swelling after surgery or other treatment that might have affected your lymph nodes’ ability to function.

I am seeing a GP in late September. I see the P.A. for another gynecological check-up in October. I can investigate my insurance/charity/surgical options between now and my next oncology appointment in February 2014.

I am feeling relieved to have gotten through this check-up, but my definition of “relief” has changed from “phew” to a sort of uneasy reduction of the alarm level from orange to yellow.

Photocredit: ripsaw-defence.co.uk

Photocredit: ripsaw-defence.co.uk

A lot can happen in six months. And I have some checking to do before checking in again with my oncology team.

Taking Off

I had a bad surprise yesterday. My landlady for the last eight years announced I will need to move. My home is owned by her and her brother; and they have made a family decision to have me leave. She did not say it, but it sounds like a family member wants to live here.

I have never wanted to own my own home. I managed luxury hotels when I was in my twenties and had quite enough of property management. I used to enjoy moving, even looked forward to it as an adventure. My last move took a “day”–thanks to two immense moving trucks and five professional movers.

After I heard the news I got into my car and drove for about an hour because I hated the fact that my home was not really mine. The car will be paid off in less than a year–so it felt like mine as I drove in holiday “exodus” traffic.

I found myself wondering again about fate and about our capacity for steering in life. In the last two years my body has been treated for cancer–an ongoing event that has had me feeling alien in my own skin at times. After a gut-wrenching shedding of a massive amount of blood that left splash marks on my walls at home, I had parts of me excised. I have experienced what it feels like to have had nerves cut in surgery and (when the pain of surgery abated) to have no feeling whatsoever in the proximity of my incision. Then I subjected myself to radiation and chemotherapy that killed and damaged countless cells in an effort to root out the really sick ones. I have felt like every part of my body was strange (shedding, peeling, leaking, rushing out of or off of me). I lost much of my hair, eyelashes, and eyebrows. Blood ran from my nose every day for months (as well as from all of my other orifices). My nails bubbled and peeled. Even my own body smells changed for a time and I hated them.

I lost a loved job teaching part time at a law school for having been diagnosed with cancer. I have returned to work there, but nothing is the same except the students and how I feel about them. Just this week I was invited to teach again this fall. The invitation requires me to teach my fourteen classes and attend five (now) mandatory meetings. The list of the five dates of mandatory meetings was accidentally omitted. The invitation tells me that the school reserves the absolute discretion to terminate me at any time for no reason. The invitation omits any mention of compensation. Ordinarily, an offer of employment requires each party to promise something to the other. Here, what is promised to me is nothing. The email invitation laid bare the deal–if I return, I get nothing from the school.

The last bastion of peace and quiet in life has been home and we will soon be parted, too. I have so many “things” in this apartment. I will have to part with some of them, too, before this is over. Every move I have ever made has involved some shedding. But I have long thought of this place with the living room laid out like my Grandma Elsie’s, its sunny yellow walls, and silver and turquoise bathroom, as a haven. It will be very hard to pack it all up and move.

This coming week I finish three more classes. That will get me down to one online class. I was looking forward to the summer slowdown. I was hoping to write. I have not done reading for pleasure in months. I recently began work for a search firm–as an independent contractor–and hoped I would have the summer to devote to it. I even made plans to go on a short vacation–ten days with family and friends in DC. I will probably have to cancel the vacation. There may not be any time for writing or reading. I will have to juggle to not lose this new opportunity to stretch my wings with the search firm.

That’s what finally did it. That thought is what finally broke me down emotionally yesterday. It is what made me drive back to the apartment so as not to risk others’ lives by driving while in distress–distress that I felt to the roots of the hairs on my head and arms. I haven’t cried for what I have experienced during the last twenty-one months. I have cried through physical pain and suffering but never for having learned I had cancer. I did cry when I heard I lost my job. And I cried yesterday for the loss of my home and my plans and all the lost freedoms. I finally cried for the cancer, too. It was not for very long. It is not like me to cry for things or events. I cry for other people in pain and animals abandoned. But it was another form of shedding that I guess I had to experience because I will stretch my wings.

This entire dreadful, painful, frightening, awful experience has been about peeling away what is nonessential. It has been a wrenching agony since it began and I have hated it even as I marked how things have started to improve. The very foundations of who I am and what I want have been tested, shaken, and stripped away. Soon it will just be me.

I sent my friends in DC a message yesterday to let them know that I might not make it out to see them this summer. I realized as I sent them that message that I have lost family and friends in the last twenty-one months, too. My aunt and uncle died. There were friends who were not strong enough to walk with me through cancer treatment and dropped me. (I am intensely grateful for the many family and friends who did not jump ship.)

I have been very focused on images of birds, but maybe this is the story of a butterfly. Maybe I will take flight after the last of the shedding, peeling, stripping, and leaking of all but the essential me is complete.

I should end this posting there–on a positive note.

But I am NotDownOrOut and part of the essential me has to ask, “What the f*** is going on here?”

Catastrophizing

Feeling snowed under.

Feeling snowed under.

Did I mention that next Friday I have an appointment for a gynecological exam and will likely see the “oh-so-very-NOT-nice” physician’s assistant whose examination of me left me upset for weeks? Did I mention that this has me feeling very anxious–as do all doctors’ appointments?

The best part of blogging has been reading the blogs of people whose situation has been worse than mine. I know how that sounds. But the other bloggers’ sharing has given me a perspective on my own experience that I could not have gotten from my own experience if I chewed on it until it was fully consumed and digested–a process that might have taken my whole life.

Until my diagnosis with cancer, I had never had an operation. I had never suffered a serious illness. The most serious medical procedure done on me was the inpatient removal of a mole that was chafed by a bra strap. The most serious pain I had ever experienced was passing a kidney stone at about the age of 20. That experience proved more humorous than serious.

While I was in the emergency room to determine the cause of my pain the doctor decided to perform an internal gynecological exam to rule out some gynecological problem. Following the exam, I continued lying on the table while I waited for results. Then a hospital administrator escorted a university student into my curtained “bay” so that the student could ask me questions about my use of contraceptives for some classroom statistical analysis. I agreed to answer the questions. The administrator helped me sit up. The nurse had not properly secured the end of the table when she took down the stirrups at the conclusion of my exam.

When I sat up, the end of the table fell down and I was catapulted to the floor. I landed on my hands and knees with the hospital gown open from neck to knees. I landed outside of the narrow confines of the curtained bay. There I was, naked and on all fours, in front of everyone, including someone with whom I went to school.

It goes without saying that there were apologies, and many hands reached down to help me rise, and no one laughed. Which seemed amazing to me at the time, because I could not stop laughing! Seriously, the pain from the kidney stone was the worst thing I had ever felt in my physical life. My hands and knees “smarted” in a way that had me thinking about that old adage, “Come over here and I’ll give you something to cry about.” I was blushing the color of a beet until it seemed every inch of my face might explode. And everyone was looking at each other like it might be the end of the world.

It wasn’t. The adage proved to have some relation to fact. There were worse things than the pain I experienced from passing a kidney stone. I could be in even worse pain, naked, on a germy ER floor, in a down facing dog position as others (one of them a fellow student holding a clipboard) tried to get hold of “something” naked, in an non-salacious manner . . . in an effort to help me stand up. Oh, the perspective this gave me helped me accept many of life’s indignities that have followed.

I still have not had a good cry about having uterine cancer. I am not sure I need to at this point. I was nonplussed when I received the diagnosis. In retrospect, it explained so many things that I had been experiencing such as heavy periods and a late end to menopause. I reacted by trying to put the entire puzzle together. I also had a very fatalistic idea about what it meant to have cancer. I just assumed that my life was over and was trying to figure out what I would need to get done before I died. Making checklists is a hobby. I never did make out that checklist.

The doctors were much more optimistic and they were being extraordinarily negative. Their entire focus at the time seemed to be on my inability to survive surgery because of my blood loss (I needed 8 packs of blood to reach a minimum state of readiness for surgery) and my seemingly poor general health. But one doctor, the head of the internal medicine department, kept coming back to report that I had passed another of his department’s tests. It appeared that I might only have anemia and cancer.

I counted my blessings day and night. I am serious about this. I did not have a book to read. There was nothing I cared to watch on TV, and I had no idea if I was being charged for using it and had no medical insurance. When my sister Kathy flew in from DC she brought me two magazines, a pen, and some paper. I loaned a magazine to my roommate and covered the paper with my scribbled lists of blessings. If my luck had run out, then I wanted to recall that it had been a good run. If the Law of Attraction was at play, then I wanted to be in a positive place to attract good health.

I did not sleep for nearly a week (other than during surgery). The closest I got to it was that micro sleep you sometimes feel happening during a long drive. One minute you are on the turnpike in Indiana and the next minute you are seeing signs for exits to Cleveland and are wondering, “What the hell happened to most of Ohio?” You have been functioning, but not optimally.

I have shed plenty of tears since October 2011. I was devastated to learn that the law school terminated me. Radiation was a nightmare. The week after treatment ended was horrific. To this day I feel like I might have died but for my sister and mom “springing” me from the county hospital. I have never been so afraid or helpless. Recovery from treatment was marginally worse than what I felt while going through six weeks of radiation and chemo. Radiation cystitis had me crying twenty-something times a day in the bathroom until that became such old hat that I just gritted my teeth and endured.

But others’ blogs were like speed markers on the road that let me know I should pace myself on my tendency to manage fear by imagining myself handling the worst case scenario. No one ever knows what will happen next or how she will handle it. And the saddest truth about cancer is that others have handled/are handling much worse than I can imagine on my own. They do manage. Sometimes angrily. Sometimes with frightening resignation. Often with grace, humility, and even humor.

I am covering my mouth with both hands and trying not to cry as I think of what some have shared about their experiences. I know that my odds are good for long-term survival. It was stage one with complicating factors, not the stage three cancer the surgeon first described it to be. It was a slow-growing cancer. There appears to be no evidence that cancer spread or remains. My surgery went very well. I am no longer in daily pain. My other side-effects can be handled.

When I agreed to adjuvant radiation and chemotherapy I did not know that they could one day lead me to another cancer. I was awake, but still in that stage of micro sleep. I just kept driving until I saw signs for Cleveland, one of which is an exit marked Strongsville. I took that exit and have put down some roots. I could spend my days catastrophizing, but that might only make this tougher.

Source unconfirmed

Source unconfirmed

The bloggers who have shared their struggles and victories are daily reminders that I should live in the “now” and not get ahead of myself. Whatever is ahead of me will be handled–ready or not–and handled better if I focus on the present and do not let anxiety rule me.

There was a time when I could laugh at the experience of landing naked and in pain on the ER floor while answering questions about condoms and diaphragms. It’s harder to do that when you’re dealing with cancer. But I still have a sense of humor. And I have been shown by some wonderful people that there are worse situations and that I can face them if I must. Life is worth it until it isn’t. And, even then, there will be hope that life’s ending can be endured.

So, I am every day grateful for the community of bloggers who have so bravely shared their challenges and fears. Without your courage and generosity, I could be wasting my life catastrophizing.

If you have never seen Loretta LaRoche, you should. She is the source of the word “catastrophizing.” http://www.youtube.com/watch?v=ggGoe_y5WqA. In that video she talks about how we can sometimes take our tough challenges and magnify them until we become hopeless. Here is a link to a video of her discussing the Joy of Stress: Party Pants, in which she reminds us to embrace life’s adventures rather than always putting joy off. http://www.youtube.com/watch?v=_5tOFdSJZJk. Here’s her video on Pessimism vs. Optimism. http://www.youtube.com/watch?NR=1&v=kqE9cuWxdqo&feature=endscreen. She uses humor to help people handle stress. Her message is resilience. I think she may also be reading many of the blogs that I read about living after a cancer diagnosis. She seems to understand that we can keep smiling–sometimes for a moment, sometimes for a day, sometimes longer.

Did I mention that next Friday I have an appointment for a gynecological exam and will likely see the “oh-so-very-NOT-nice” physician’s assistant whose examination of me left me upset for weeks? Did I mention that this has me feeling very anxious–as do all doctors’ appointments? Maybe I’m already feeling better because of the messages of hope in so many other people’s blogs.

Facts of Life

My mom swears that I was very young when she took me to the zoo and I called out on sighting elephants, “Pachyderms!” If this story is true, then I owe it to my mom. She set me in front of the aquarium when I was a baby and let me watch the neon tetras race from one side of the tank to the other. As a result of this eye exercise, I learned to speed read before I started kindergarten. She also taught me to call them as I see them.

When I was set to begin first grade, my mom volunteered to cover the first year reading materials in brown paper bags. We sat together at the kitchen table for two weeks, during which I practiced cutting the bags to size. When my fingers grew cramped from cutting the paper and folding it to fit the textbooks, my mom had me read aloud from the books. By the time that school started I had read the entire year’s curriculum.

I was not nearly as well prepared for sex as I was for school. Oh, we had the talk about the facts of life when I was nine. But I was only about six when Gregory, a nasty little boy who lived down the lane, told me about sex. I recall that he stuffed a jump rope down his pants. Then he tugged one of the handles through his open zipper and explained the mechanics of intercourse in the world-weary way of a boy who knows just enough to be dangerous.

I can still remember my disbelief. I stared at him for a long moment and then said, “I have seen your mother, and I can well believe that she has done such a thing. But my mom would never do anything like that. Not ever!” He laughed a little, but then looked just insecure enough for me to press home my point.

So I poked him in the chest with my finger and said, “Ohh, yeah, your mom looks like she would do such a thing, but my mom wouldn’t touch that!” Here I gestured dismissively at the piece of red wood dangling from his open fly. “Because she is a lady.”

When I told my mom what I had said she bit her lip and shook her head in disbelief. Of course, I told her about all of this when I was in my forties.

In high school I was voted to be many things. I don’t remember all of them. But I do recall that my class voted me second most innocent girl. I was outraged–not that there was any point in denying it–and not for the reason you might imagine. The girl voted to be the most innocent girl was a cheerleader. I barely knew her, even though I was voted first or second friendliest girl in the class.

I was outraged because someone told me she was a “slut,” and I did not want anyone to imply the same thing about me. I am pretty sure that I had no idea what it meant to be a “slut” back then.

Oh, I knew by then that Gregory had not lied about the mechanics of intercourse. I knew many things about sex in the same way as I knew that pagan babies in Africa somehow were nourished when I cleaned my plate. All the information was acquired secondhand.

I understood that good girls waited until marriage. My Grandma Elsie loved Harlequin romances and Barbara Cartland novels so I also understood that love was a heady experience and its physical expression was something a girl had to be prepared to halt if she wanted to be a good girl. I knew that good girls were good. I even knew that bad girls had more fun.

I recently described my outrage at being placed in the same category as someone people called a slut and admitted that I am now ashamed of myself for having been quick to distance myself from another girl my age merely because someone else had judged her. I think the decision not to judge others is one of the biggest lessons I have learned in life.

I am not prepared to apologize yet for my comments about Gregory’s mother. She was, after all, a mom who wore a bikini while she watered her lawn. No one who had a grown kid wore a bikini back then. There I go again, judging.

I once had a friend who addressed the issue of “judging others” by surrounding himself only by people just like him. If he only saw people who would act as he did, then he could avoid the urge to judge.

Another friend defended his judgments. When I asked him whether he had an opinion on everything, he tipped his head to one side and asked, “Isn’t that the object of an educated mind?”

I have a friend who rationalizes judgment as discernment. She is always speaking of people as falling into categories based on behavior. At times it appears that all the categories are on the same level. But once in awhile I hear judgment made about an entire category of people sharing a trait as though that made them similar in all material respects.

I felt the sting of another’s judgment this week. I received a letter from one of the schools at which I teach. The school has been investigating the circumstances surrounding my termination on the day I underwent emergency surgery for uterine cancer that presented itself as hemorrhaging.

One supervisor (Martha) ordered me to stay home and not return to work when three days later I told her I was going to be able to teach my next class. She knew I had been terminated, but did not tell me. Her statement was that people who have hysterectomies, like people who have babies, must take longer to recover.

That woman’s supervisor (Susan) sent me an email the next day and informed me that she already had terminated me because people in my situation always suffer setbacks and she could not take the chance I would return only to become too sick to continue.

The deans apparently signed off on these acts. The email I received giving notice of my termination states that the dean of faculty may have agreed to my termination. The law school’s dean later agreed to pay me the remainder of my stipend for the semester, then he or someone else stopped payment. It took me ten months to get payment.

The investigator wrote to me this week:

I’ve completed my investigation into your allegation that Professor Martha . . . may have violated the university’s Anti-Discrimination and Anti-Harassment Policy and Procedures.  I have determined that she did not violate the policy; therefore, OIDE considers this matter closed.  I have attached a letter for your reference.

I feel judged–to be a fool. My complaint to the university, which it solicited from me after learning I also have complained to the Equal Employment Opportunity Commission, was not about Martha. It was about a series of events triggered by Susan. I could not then determine what Martha’s role was in the entire matter. There also is no mention in the letter of events that have occurred after my initial termination–events I would characterize as retaliation for the initial complaint.

I have written to inquire about the status of my complaint, which involved others and other events. So far, no response.

I do not want to judge those who judge me, but today I am feeling a little more affinity with my friend who asked when I challenged his judging of others, “Isn’t that the object of an educated mind?”

It seems to me that there is a giant pachyderm in the room that some others refuse to see or cannot name. Does the university really want to ignore an email that puts in writing discrimination on the basis of a diagnosis of cancer? Does it want to ignore the fact that my doctor had said before and after surgery that I would be able to return to work the following week? Is it familiar both with the Americans With Disabilities Act’s explicit recognition that a cancer diagnosis can make a person particularly vulnerable to discrimination and its implicit recognition that people can be discriminated against unfairly even when their conditions appear to be a disability but those conditions do not actually prove disabling?

My question: Are these the facts of life? I feel, for the second time in my life, like someone from the neighborhood has shared with me an important lesson on how a person gets screwed. I feel that once again, the message might be right. This might be how a person gets screwed.

The Process of Healing

OLYMPUS DIGITAL CAMERA

After twenty-five sessions of external radiation aimed at my hips during November and December of 2011, I hoped there were no traces of uterine cancer remaining in the vicinity. I had a number of burns in addition to those pictured above. Some of them were on sensitive flesh that I did not photograph. All of the burns have healed.

At the time, I was under the impression that any burns from radiation would be more like a bad sunburn. I expected to have a band of red skin that hurt but did not weep or bleed. I did not imagine that some of these burns would come in regular contact with fiercely acidic post-chemotherapy diarrhea multiple times per hour.

Suffice it to say that informed consent may be obtained without critical information when your radiotherapist professionals use hand signals to describe what will happen to you instead of words.

I am not complaining about my health professionals today. My point is that cancer treatment can be as ugly and painful as some cancers. I got through it. I am healing on the outside and on the inside. I hope that this process will continue and that I can go on without a return of the cancer that has turned my life upside down since October of 2011.

Life has been turned upside down. I have been through surgery, chemotherapy, radiation, infection, termination from one of my jobs, two hospitalizations, months of incurring medical bills for which I did not have medical insurance, applications for charity, chronic pain from side-effects of treatment, many challenges, blah, blah, blah. I am always aware of the fact that my experience with cancer was mild compared with the experiences of many of the people I met along the way. I feel very lucky because I am healing.

This week I asked the DePaul investigator looking into the circumstances of my termination in October 2011 for a progress report. She told me (as a preliminary announcement of her conclusions) that she has concluded that portion of her work and found no violation of university policies. This is the email that I received October 11, 2011, after I said I was already able to return to work:

Dear Cheryl,

I was so alarmed to hear from Martha that you had to have surgery last week, but so pleased to hear from her that you are already on the road to convalescence! Please take care of yourself and don’t overdo it in an effort to achieve normalcy too quickly. You have been through a lot—both physically and emotionally—and you can’t expect to bounce back with no set-backs.

I understand that you are eager to return to your class this semester, and I know that your students would be delighted to finish out the semester with you; many of them have expressed concern about your health and enthusiastic appreciation for your instruction. I need to let you know, though, that after fully consulting with the Dean of Faculty, I felt compelled to make the decision to reassign your students to other LARC III sections. I sincerely hope that you recover from the surgery immediately, but it has been my experience that people in this situation always have slower come-backs than they anticipate. I had no way to hedge against the risk that you might return to teaching this week and then right away, or a few weeks later, find yourself simply unable to continue. My first responsibility is to the students’ learning and the smooth functioning of the LARC department, so I made the decision that increases the chances of maximizing both. I am sorry if my decision disappoints you, and I hope that you are able to understand the situation from my perspective.

We have every hope and expectation that you will be fully healed and able to teach in the Spring semester, and we will welcome you back in January with pleasure. If we can do anything for you in between now and then, please let me or Martha know. You have my every wish for your quick return to health and the fullness of life.

Susan

After receiving this email, I was told by the author of the email and the dean of the law school that I would be paid the remainder of my contract fee. I was paid that amount in August of 2012 after I made repeated calls to people.

I am surprised by this preliminary conclusion from the university’s investigator. Apparently, disability law, like cancer treatment, means different things to different people. It is not enough to read the papers and listen carefully to what is said.

I will be interested to hear the results of the investigation of my claim that I have also been subjected to retaliation for my complaint about the foregoing. No preliminary conclusions were shared about that aspect of my case.

This weekend I was flipping channels on the TV and came across the sermon of TV evangelist Joel Osteen. He was saying, with due respect, “Get over it.” He directed his message to people who were bitter about wrongs done to them. His message was directed to persons who hold grudges against a parent who did not give nurturing to a child. He spoke to people who have been wronged by a spouse, another family member, a neighbor, a stranger, or a friend.

I listened for a little while and I now believe that there was a message for me in what I heard. I did not want to accept that on Sunday. I ended up turning the TV off.

Today I am thinking that life is not easy and situations sometimes are not fair. But, if I can handle everything else that has happened in the last nineteen months, then I can handle the disappointment of learning that one of my employers thinks it is okay for its managers to act this way.

I will admit that this is painful. Right now I have pain radiating from my chest to my fingertips. My throat is tight and sore from holding inside my disappointment. It cannot be as terrible as cancer or cancer treatment. The wounds will heal. The burns on my skin healed. The burns inside my bowel and bladder appear to have healed. I will heal from this injury, too. Sometimes life hands us a bitter pill. That does not have to make us bitter, too.

Bruised (Part III)

I still don't know who chews on the hospital's chairs.

I still don’t know who chews on the hospital’s chairs.

I proceeded to the CareLink charity office and waited in line for a number so that I could reapply for charity status. There were not as many people waiting at 10:30 a.m. on a Friday morning. I was number 469 and the office was serving number 458.

I took a seat inside the interior waiting room and tried to grade papers, but I had trouble concentrating. I just stared at the pages and ended up proofreading for typos instead of doing any serious reading.

There were many people waiting in the twenty-seven available chairs, but there were empty chairs, too. Some people were in a militant mood. There were two adult women in long dresses with their hair concealed by elaborate headscarves. They had not obtained a number at the desk out in the lobby and had waited for some time. They wanted someone to serve them without a number. No matter how many times they tried to get served without a white ticket, the staff declined to serve them. Sometimes voices rose. I believe one of them finally went outside to get a number.

There were many people with numbers on green tickets. They needed someone to approve a discount or fee waiver on their prescriptions. This was bothering some of them. You have to go to the pharmacy to claim your drug (a task that can take an hour, two, or three), get a sheet of paper that shows the fee for the prescription, take that to the CareLink office, wait for approval of the fee waiver, then go back to the pharmacy to collect your meds. Some people pick up prescriptions in the same building as the charity office (people being released from the hospital or dropping off first-time prescriptions). Some people have to cross the street to the Fantus Clinic. It was cold outdoors and the winds were punishing. Some of the folks waiting were on crutches, in wheelchairs, or carrying luggage.

Only one employee was on hand to approve these waivers. Sometimes other employees came out to approve enough waivers to keep the crowd’s size under control. Then they went back to their cubicles to handle people with previously set appointments and people like me with handwritten white “tickets.” My “ticket” was a red ink number on a piece of white paper the size of a fortune from a fortune cookie. I kept tucking it into safe places and it kept coming loose. I think it was an omen, but I tend to ignore them. One man was incredibly “antsy.” He kept getting up and inquiring whether he could be next. The answer was no. He sat in a chair in front of an empty cubicle, rose, knocked the chair over, righted it, sat down again, studied his smartphone, eavesdropped on the meeting taking place in the next cubicle, studied his watch, observed a woman wearing a long down coat, carrying a rolling suitcase, talking to herself, coughing without covering her mouth, until she began watching him.

As I sat there I observed the crowd. There were a husband and wife with three young children. They had number 468. They sat beside me. They entertained those kids, including an infant, and you hardly heard a peep from them. There was a beautiful woman waiting with a younger woman who might have been her daughter. The older woman had very long brown hair worn in a long ponytail bound periodically with bands. There was a bun wrapped around the top of the ponytail. She had wrapped a silver cord around the base of the bun. The back of her cinnamon-colored winter coat was decorated with black leather medallions to which some other decorations were affixed. It looked like a design from a palace in some Moorish country. There were tiny black stones decorating her collar, too. She wore reading glasses down low on her nose. Her skin was so fair that her freckles looked like pieces of bronze. She was very angry that the wait was so long. I could not make out her words, but she scolded folks regularly. She sometimes got up and escorted her companion out to the first waiting room. Then they returned and continued waiting.

A man in a motorized wheelchair wheeled alongside me at one point. He wore an immense white and black fur hat like a hunter might wear, if he bagged some Siberian white tiger. Because he came up to my side I got a good look at it and believe it might have been real. He also wore a mink jacket with a fur-lined hood. It looked velvet soft and was the most incredible shade of brown. He was a big man, very tall, and, of course, bundled up. He had a lovely smile and lively eyes. His voice was cocoa with whipped cream and a cherry on top warm as he patted my arm and said in a very loud voice, “I just have to say that I am loving your haircut.”

“Thank you.”

“It is just a pleasure to get to look at.” He looked around the room, “No one else seems to have taken hair as seriously as you have. This is one of the best times of my day, let me tell you!”

I thanked him again. He motored away and I saw that, hanging from the back of his chair was one of those yellow and reflective tape vests that road workers wear. It read: “Watch Me For Safety.”

Of course, he proceeded to go to one of the cubicles to demand service. It was so startling to have him publicly compliment my hair one minute and then go batsh*t crazy on some poor charity representative. I thought they were going to call security as things escalated, but a woman with a forceful cloak of authority told him that his needs required special handling and he would be served immediately if he would head immediately to Room 1317. He left as fast as his motorized wheelchair could take him and did not return. As he approached the heavy metal doors to the lobby waiting area, he lifted one foot and kicked the thing open. I think everyone flinched because those doors have no windows and open out so newcomers are always on the other side of them trying to figure out whether to pull or push. No one got hit.

At 10:40 a.m. we were up to number 464. That was incredible. Of course, people started taking lunch breaks. So it slowed down. But breaks appeared to be very short. At 11:10 a.m. staff called 466 and 467. At 11:15 a.m. someone called 468. I was next.

It took sometime for my number to be called. The charity’s staff seemed to be enjoying a Friday moment. As people started getting a tiny bit unruly the staff started repeating certain comments in soft voices and the message began to work its way to where I sat like a game of Telephone.

“He says he’s been waitin’.”

“She says she’s got things to do.”

“He’s got a job to get to.”

In the end I was called. Based on my current income, which is actually lower than it was back in 2011, I qualified for a 25% discount on hospital services. What hurt me was the DePaul did not pay me for my fall paralegal classes in the last payroll period of December. Then it did not pay me for the first payroll period in January. It arbitrarily decided to change the customary schedule for paying “contracts” with people who it treats as employees for payroll purposes and independent contractors when it feels like it. So the most recent pay stub I had showed me as earning much more in one payroll period than I ordinarily do. I also taught a 12-week class in 8 weeks for another school during January. That upped my monthly pay over what it usually is.

I felt really bad for some reason. It was like DePaul took another swing at me, when it really did not mean to do that. An employer’s arbitrary altering of a pay schedule to suit its purposes is a regular event for many adjuncts.

I probably should have waited for a February pay stub showing only the halved fee paid for teaching Transactional Drafting. But I was not trying to “work the system.” I will just keep working on getting a quote for insurance from someone and hope I can cover 75% of the cost of the three doctors’ appointments, five blood tests, and pap test I already have had since the last week of January. I have 30 days to appeal the determination. Maybe my pay stubs will better reflect my circumstances in that time.

In any case, I won’t be scheduling any operations for this year. I have experienced enough “tinkering” in the last fifteen months. I am resourceful and still have people to call and options to explore. And I am feeling much better than I did when this experience began. I am still grateful for the doctor who diagnosed me. I am grateful to the excellent hospital, doctors, and professional staff who operated on me. I value the thoughtful care given by my oncologist and feel lucky to have had her wise advice in making decisions that will affect me for the rest of my life. I think my oncology nurses and the phlebotomist who helped me through chemotherapy were excellent people. I owe an immense debt of gratitude to the two charities that covered so many elements of my medical care. I am grateful to my county, its hospital, and all the excellent people I have encountered there for having resources for people like me.

I have family, friends, and faith that things will turn out well. And I still have my sense of humor.

I remain Not Down or Out.

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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