Well Tulsa, It’s about that time. I’m leaving you. This time, I think, for good.
I came to you with my mom from Connecticut after my dad died when I was 7. We were supposed to be moving to Ft. Lauderdale, Florida, but my mom made a permanent detour via Southern Illinois and then here when I was in the 8th grade.
I started school in one of your junior highs, where the boys in my 8th grade band class were not too kind in their words to me as I was “welcomed” to Tulsa and into the band. When the band instructor introduced this new barely pubescent 12 year old flutist from Illinois, the boys in percussion chimed in. “Is she pointed or flat?” Said the first. “She’s flat.” Replied his buddy. To which the band instructor said “ .“ That was my first wrongful attachment of pain to you Tulsa. To be fair, I already had a chip on my shoulder for my mom not taking me to the beach in Florida.
I went on to two of your private high schools and graduated. I went away to a short lived college career before I returned to you at 17. I worked in your restaurants. Drank in your bars.
I escaped you at 19 for a year of fun in the mountains. Skiing and drinking in Crested Butte, Colorado.
Then a summer in Lake Tahoe working at Caesar’s. Then a couple of years in Texas. Houston first where I got married and drunk alot. Then on to Austin, where I got unmarried and sober. Once.
After that Tulsa, my car brought me back to you. All in my early days of sobriety. When the advice is to not make a major change in the first year. I must have thought that being blonde and left handed made me exempt as I left my husband and Texas with all that I owned in my car bearing a sign in the window which read, “Tulsa or Bust,” to return to you at less than six months sober. I went to a lot of your meetings. Loved and was loved by a lot of your people.
I spent three and a half months in one of your halfway (insane) houses, then several apartments over five or six years until that second marriage of 24 years happened.
We lived on your outskirts in the sod country of Bixby, Oklahoma for 14 years, where we built a lovely home, complete with three hand prints, one for mom, one for dad and one for 4 year old Abby, dated 2002 on the floor in the corner of the garage.
We fled from you for our first year of marriage to the Dutch Country of Pennsylvania. I could not be with you. I did not like you. I thought you made me unhappy. And I was sure that leaving you was the answer.
After one year of experiencing that the natives of Lancaster, PA only like people who visit and loathe those who bring moving vans, we aimed for Austin, Texas, but you had the job that fit the mechanical engineer in my house, so back to you, Tulsa, we came.
While you welcomed us back,that marriage of 24 years eventually ended here. And so did the dream I had spent have of my life believing in here in Tulsa.
My creative work of painting began here as my marriage was coming to a close. I started to paint whimsical furniture for kids going into foster care. I also started my real spiritual work with you Tulsa. I pushed up out of the ashes of my former life, and you generously provided me great teachers of what God does and doesn’t look like to teach me the lessons of the day.
I completed my treatment of and survival from breast cancer here with you Tulsa 18 years ago. Some of your docs could use some work, in my experience, but there were enough good ones here to meet my needs. I mean, I’m still here. Right?
I have known much unhappiness while living with you. You get dark in the winter and you are cold to me too. I have spent much of my time living with you complaining about you. About the way you look. You don’t have an ocean. Or mountains. Your lakes feel like big mud puddles with sticks and snakes and God knows what else in them. I sound like a bitchy wife or ungrateful child here. Don’t I?
One thing I have learned and forgotten and relearned over and over again in my spiritual walk of 35 years is that nothing is perfect and focusing on what I see as negative just makes it more so. Conversely, focusing on what I do like makes it even more so. In other words, it’s all about perspective. And appreciation or as I like to call it, gratitude.
Tulsa, I want to ask your forgiveness. You did nothing to me. My unhappiness was not your fault. Your version of traffic is nothing compared to what I knew in Texas. Your people are, for the most part, friendly and those who I was in relationship with for support, were quite loving indeed.
I could live with you and find the good in you of which there is much. And I learned to do that quite well as I learned and experienced over the years that my happiness is an inside job. To be done wherever my body resides.
But Tulsa, the God of my understanding has directed my body and soul to the beach. I suffer pains in my body and spirit in the darker days and cold of your winters. Each season is harder on me than the one before as my body and mind advance in age. We just aren’t a good match, you and me. Not today. And because of that Tulsa, I am leaving you.
I am an artist and while you have a quite impressive art community here, one that I only began to truly discover in the last year or so, my bliss is in the colors of the Emerald Coast of Destin, Florida, where I pick up keys to live on August 1. Sapphire blues, emerald greens, periwinkles, tangerines, pinks, turquoises-all my favorite palette to surround myself, dress myself and work with, all on the ever changing canvas that God puts out for my eyes to feast on there at the beach in the water and the sky. It pulls me like a magnet. That’s how God is in my experience.
And so does the weather, particularly their version of winter. I spent all of February there basking in their version of cold, while my daughter sent me pictures of the snowman she had made in our back yard. While I love the smile you put on her face as she stood next to said snowman with the hot pink spray painted boobs, I was so relieved that I could hang up the phone and be with the door open where my body was in a relatively warmer place.
I have a calling to help young women who are marked with the F word of Felony. Women who have done their time for their crime, which in most cases was non violent and drug related, done at a time of sickness not badness, but can’t get a break or a decent job in our society. I want to teach them to paint and sell furniture. Something I began here with you Tulsa. And I have found a community of these women in Florida who I can help.
I do love you Tulsa. You do have your own unique beauty and style. Your Riverside Drive along the Arkansas River. Your Philbrook Museum, Woodward Park and Mapleridge neighborhood, just to name a few.
You have provided me with good friends, great loves, jobs, shelter, amazing doctors, wonderful homes, terrific neighbors, treasured memories, and you are the birthplace of my favorite co-creation, my daughter Abby.
Thanks for my Happy House. The one on Rockford Place. The one with the hot pink door. This has brought me great joy. My back yard full of bunnies doing what bunnies do best as they just keep making bunnies. For my sun porch where my art grew as my heart grew. And my living room filled with light all around and my ever changing pictures of my picture window. What a delightful revolving evolving art show that has been to see. With each passing moment, as I look out through the panes.
And my front porch that I took for granted until the pandemic hit. That porch became my window to my spiritual friends. Where I sat perched at 8 am, every day since March, armed with phone, coffee and gratitude and a need for connection, abundantly filled by people all over the country. In that tiny screen on my phone. Channeling God through channel Zoom.
About Abby, Tulsa. I have never lived more than 20 minutes from her 22 year old self. And she is staying here with you. So, please. Take good care of my little girl. The one who lives inside of that bright, funny, gifted beautiful young woman of whom I am so proud. Surround her with your best God squad to protect her and love her as I will only be able to do so at an 800 mile distance. Keep her safe in her home and on your streets and in your workplaces and with those she keeps company with.
Thank you Tulsa. For being my home all these years. And for letting me go.
I am starving for affection. I live alone. And I am sad that prudent measures of healthy living in the midst of a pandemic include not touching others. So I looked it up and the definition of starve is “suffering or death caused by a lack.” I don’t feel like I am dying, but a hug or two sure would be nice.
As I write this I have done some research and learned that there is a thing called Touch starvation. It even has an alias. Skin hunger.
“When you touch the skin,” explains Tiffany Field of the Touch Research Institute at the University of Miami, “it stimulates pressure sensors under the skin that send messages to the vagus [a nerve in the brain.] As vagal activity increases, the nervous system slows down, heart rate and blood pressure decrease, and your brain waves show relaxation. Levels of stress hormones such as cortisol are also decreased.” Touch also releases oxytocin, the hormone released during sex and childbirth to bond us together. In other words, human touch is biologically good for you. Being touched makes humans feel calmer, happier, and more sane.
Without touch, humans deteriorate physically and emotionally. “We know from the literature that lack of touch produces very negative consequences for our wellbeing,” says Alberto Gallace, a neuroscientist at the University of Milano-Bicocca. He explains that humans are inherently social creatures; studies have shown that depriving monkeys of physical contact leads to adverse health outcomes. Our brains and nervous systems are designed to make touch a pleasant experience, he says. “Nature designed this sensory modality to increase our feelings of wellbeing in social environments. It’s only present in social animals that need to be together to optimize their chances of survival.”
For four months now, I have missed being able to show my affection for my friends. I have felt like the loneliness in this time has been exacerbated by not being able to touch those friends that I do see while practicing social distancing. I am humbling myself to admit that too because this world has become so big on autonomy and technology that I think the need for physical contact has been dismissed and devalued.
I am in a couple of support groups where hugging hello and goodbye is common practice. And this is especially good for people like me, who don’t get physical touch at home. Since March of this year, these groups have, for the most part, taken to the online rooms of ZOOM, where we get to see those we love, but the touch needs met by the hugs hello and goodbye are gone for now and into the foreseeable future. And I miss it terribly.
One of my most affectionate groups of friends are those that I spend all day Thursdays and half day on Saturday with at a place called Stuff Dreams Are Made Of in Jenks, Oklahoma. In this modest craftsmen house, full of vintage everything from postcards to buttons to trinkets to marbles and toys, we gather to make art. A different theme suggested each week. Some weeks a scribble is the starting point. Others a mandala of mixed media finds or doll making. But really, we gather to make connections. The art is merely a by product.
And our practice there for the year and a half I have attended religiously to grow my soul with the use of paint and found objects in the company of like minded travellers is to welcome each person as they arrive with hugs all around. Everyone gets up from their button sorting, doll making, painting or gluing to literally get in line and welcome fellow creatives into the room. And we all do the same whenever someone gets up to leave the house. “Hugs!” Linda exclaims, upon each arrival and departure. And we all follow suit, as she is like our Pied Piper of Passion.
When the pandemic rolled in, we had to take a break from gathering at Stuff Dreams Are Made Of. A month to honor the mayor’s “Shelter In Place” order. Stuff Dreams Are Made of was forced into slumber.
From mid March to June, I went through withdrawals. Gone was my reason to load up my art supplies on Wednesday night for the 15 minute drive across town to this magical place where my friends and I would gather to create art, eat, pray, love, laugh and tell stories.
Gradually, we started back up getting together to make art. A couple of times in the interim, I would sneak over to meet Linda over a social distanced Happy Meal in the driveway, the chosen faire of every Thursday when business was as usual. We all suffered through chemical soaked apple slices and skinny dry burgers just to get to the toys that have been proven to be the stuff whimsical art can be made of. And meeting her helped. It gave me a reason to leave the house with the payoff of seeing my friend.
The Stuff Dreams Are Made Of woke up from its long springtime nap on the first Thursday of June, opening its doors to a social distanced small group of masked creative zealots. And I was first in line.
It was strange at first. I felt socially atrophied. So when I found myself back in the social setting with these people, I found myself talking rapid fire for the first five minutes, saying practically everything I might say over an entire day. It was like the dam had burst and I had Post Lockdown Tourettes.
But the lack of physical contact for all of these weeks, that was something else to adjust to. And while we are back at our art making, we can only see smiles in our eyes as the rest of our expressions are blunted by a piece of fabric that acts like a barrier blocking good things and bad.
After a few Thursdays of not being able to hug hello and goodbye, I had had enough.
About a week ago, when I walked through the doors right after the door opened at 9am on Thursday, so happy to see my good friend and proprietor of Stuff Dreams Are Made Of, Linda, I looked at her, and I clapped. “I am clapping my hug to you!” I said and she grinned her big kid grin and joined me. I slapped myself silly from hand to hand as an energy came from it that surprised me with relief. There was something tactile in that touch, even if it was just one of my own hands slapping the other. Two senses were sated as I could hear the smacking of skin on skin and I felt some real satisfaction. Some touch need met.
So as the others began to arrive, one at a time, we welcomed them in with applause, explaining as they looked at us funny, “We are hugging you with applause!” And they reciprocated. This went viral in a good way as each person came and went throughout the day of arting as a group.
This may seem silly, but if you think about the world we are finding ourselves in, where human touch comes with a potentially high risk until further notice, why not get creative? For those of you who live alone and are used to the hugs from fellow travellers, who are choosing to be careful when it comes to physical touch, I dare you. Try this! And if I am right, let me know what you experience.
In the wise words of Herbert Spencer, 19th century english philosopher, biologist, anthropologist, and sociologist:
“There is a principle which is bar against all information, which is proof against all arguments and which cannot fail to keep a man in everlasting ignorance-that principle is contempt prior to investigation.”
Let’s start a new virus. One that won’t need a vaccine.
“We don’t like your image. Come back tomorrow.” The words that I heard just before I hung up my phone. This wasn’t about public persona either. No, the image referred to was the mammogram that I had just had. Number 13 in a series of 13 annual boob squishings.
I was 42 years old, a wife and the mother of a 4 year old daughter. We were getting ready to build our dream home and move to suburbia in Bixby, Oklahoma to raise Abby, plant flowers, walk dogs, go to basketball games and be happy.
My mother had breast cancer when I was 30. She was 67, lost a boob, took tamoxifen for five years and she was good. Hell, the day she got home from the hospital after over a week of festivities, she was out sunbathing on her deck while I passed out on her couch.
When I showed up the next day for this follow up to the unhappy mammogram appointment, I wanted to throw up. I lay on the table, surrounded by techs and in walked the doctor. Not just any doctor either. This guy was the head of radiology for Hillcrest Hospital in Tulsa, Oklahoma. They all stood up straighter when he got there.
I tried to crack jokes as I lay there outnumbered by people who had their clothes on backed by the image of one ominous looking shadow about the size of a grape with a big red circle around it on the x ray screen.
I am quite sure I was funny, but this was a tough room. Not a peep. Until the doctor spoke. “You have a stage 1 breast tumor, 8 out of 9 for aggressive growth…blah blah blah, blah blah blah blah” was what I heard. In an instant, I had joined the ranks of a group I wanted nothing to do with. My mother was a member, her mother had a breast removed, (unclear if that was cancer), my Aunt Rosemary had succumbed to metastasis and we had just buried a member of our church who fought long and hard for 16 years from a stage three breast cancer. And I was about to get schooled in the science of cancer, whether I liked it or not. And I did not. In fact, a lot of the information bounced right off as I was in complete shock.
My case was more complicated than my mother’s. The start to finish of it all. My journey, while not as bad as some, I mean, I lived, but what I did experience in the process was from hell. There is no other way to put it. Not only was the cancer actually a 9 out of 9 for aggressive growth, meaning whatever was in me was growing at the highest speed, my ensuing treatment and recovery spanned two long, hard years.
Cancer Treatment Center is in Tulsa and was open at that time, offering a holistic approach, using conventional medicine, spiritual guidance as well as counseling and nutrition.
I chose just plain conventional medicine. I didn’t give much credence to spiritual anything or nutrition for that matter at that time because frankly, while I was sober and being in contact and relationship with my creator is the cure for me there today, at that time in my life, I worshipped a God in the form of my intellect and the things outside of me- the kid and the van and plans to build the house-these were my God, so I saw no merit in that other God stuff to take care of body, mind and soul- like yoga, meditation, visualization, nutrition. What’s funny is that it was The Cancer Treatment Center that ultimately made me whole again at the end of what was a two year walk down a hallway that had a few burned out light bulbs along the way.
The day I found out it was cancer, I was exhausted. It was an afternoon sometime in June and I was sprawled across my bed. My daughter Abby, age four, walked in and stuck something on me and left. When I looked down, what I saw was a red heart shaped sticker about an inch in size that she had gotten out of a February issue of a kid’s magazine. And when I looked at the spot where she had (not so) randomly placed it, it was right where the tumor was located on my right breast. This was one in a series of many moments that drove home the undeniable fact that God was present in the midst of a very rough patch in my life.
In order of appearance, the treatment players were these:
July 18, 2002-Lumpectomy in Sunny California, where we were led by a long set of circumstances. These circumstances made Dr. John Phillips, a brilliant surgeon in Tulsa, Oklahoma who had taken care of my mom, and removed many breasts once belonging to old Tulsa oil money bless the trip.
Dr. Phillips is part of the reason I am still here because right after my mom’s surgery, he sat me down when I was just 30 (like the father I did not have after age 7) and said, “You, young lady, will have an annual mammogram from now on and do monthly self breast exams.” I did not do the recommended self exams because I had fiber cystic tissue, a.k.a. lumpy boobs and the “normal” bumps to the touch made me gag, so thanks Dr. Phillips. Those mammograms paid off.
Lumpectomy is where they just cut out the lump and the tumor, along with a prudent amount of lymph nodes from under the arm so that they could check them for cancerous cells. The good news for me was that it came back a negative, meaning that avenue for spreading was likely to be a dead end.
Lymph nodes are small, round or bean-shaped clusters of cells. Inside lymph nodes are a combination of different types of immune system cells. These specialized cells filter your lymphatic fluid as it travels through your body and protect you by destroying invaders.
They took 14 of these good guys away from me and I was left with the lifelong threat of a thing called lymph edema. That is when there is a swelling in the arm which can come on anytime post cancer and can be very painful. I attended a support group once with cancer survivors who had a long period of recovery and had been get hit with this painful condition out of nowhere. I take precautions with massage therapy, exercise and I wear a compression sleeve to travel.
We made the best of California. We were there for about two weeks for my initial treatment, which included a lumpectomy. My ex -husband, who I refer to as my wusband, daughter and I slept together in a “Heavenly” California bed at the Westin Hotel like Charlie Bucket and his grandparents in Willy Wonka’s time. We lived at the Westin Hotel in Costa Mesa, near the breast care center at Fountain Valley. While there, we enjoyed the beaches of Malibu, Laguna and Huntington.
The day after my lumpectomy, I left my wusband and Abby asleep, slipped off to La Provence, the fancy hotel coffee shop for a scrumptious celebratory bowl of oatmeal that had creme brulee on top. As I made my exit, I stopped at a round table of people who appeared to be having a business breakfast, uninvited. “Yesterday, I had cancer. Today, that cancer is in a ziplock in a dumpster somewhere in Orange County.” This was my boasting. It wasn’t much weight loss to be rid of that tumor, but the weight lifted was immense. The response was enthusiastic as they gave me a unanimous round of applause.
A day or so later, we got a doctor’s note for the short lines at Disneyland and went to the Magic Kingdom. I had never been and since my daughter was four, well, we just HAD to go. We had a great time, I bought out the gift shop and then it was time to return home to our “new normal” life living through cancer treatment in Oklahoma. The doctor’s orders were for six rounds of chemotherapy followed by 35 rounds of radiation.
Summer/fall 2002-Next up, chemotherapy. I could paste the definition of the word and the process, but my version will make the point. It’s liquid poison. Used to kill lots of things. Like cancer cells, healthy cells, happy cells, appetites, spirits and energy reserves, and any hair that you might be fond of and even some that you aren’t.
Abby was also quite cognitive of the fact that I was going to lose my hair because I was sick. “Mom, I wanna shave my head.” Even though she was only four, she sounded like a teenager, standing next to me in the bathroom at Lowe’s, until she followed that up immediately with a perky “Will it grow back in two weeks?” We compromised and she settled for a mohawk with blue glitter.
When I was pregnant just four years before this, I spent my first trimester in bed and in the hospital for nausea, but let me tell you, that was NOTHING like the nausea I had with the “A/C Cocktail,” as the kids in the clinic like to call it. That stands for Adriamycin/Cytoxin. Two toxic liquids that get shaken, not stirred, then placed in an IV and slowly, but surely, over a period of hours, with six trips over a couple of months to just drive that shit home, sent into the body through an IV and a port. Just to give you a clue, Cytoxin has a pet name of “Red Devil” as it is one of the most toxic of all. If it gets ON the skin, it can cause severe burns. And from my experience, (I won’t get into much detail,) it felt like gasoline coming up my throat when it left me through a different pathway from the nice little port it came in on under my chest skin.
The day before chemo was to start was a field day at the hospital. I was wheeled and rolled from place to place to get checked out for treatment. Bloodwork and vitals and installation of a chemo port, all part of the day. A port is surgically placed just beneath the chest skin so that there are less needle sticks in the skin.When they go to plug in the IV for chemo, the port is used each time to offer less sticks to an already assaulted body.
Somewhere along the course of my day, I decided to have a party. That night. I called it my “Comfort Shower On Chemo Eve.” The idea was to have a party to distract from the fact that I was having chemo the next day because I was so afraid of that treatment. The party invite morphed to include a cost for admission which was a tube of pink lipstick.
My anxious brain had a wild idea to start a foundation called The Great Pink Hope. I had worked in low income housing and when I found out I had cancer, I learned that the demographic of low income and minority women had a higher incidence of breast cancer. I thought that maybe these women, who typically did not have access to any reliable transportation if they did go for a mammogram, could be coaxed out of their apartments to be tested with some kind of mobile mammography service by giving them a free tube of pink lipstick for their trouble. Somehow, I thought I would find the time and energy to make this happen. It didn’t I had other things to do.
It was a slow news day in Tulsa, so all three local TV stations showed up to cover the happy event. I confess, I invited them. I and I felt like this was good news and I still knew the number to the KJRH newsroom, Tulsa’s NBC affiliate where my brother had been a reporter in the 1970’s .
By the end of the night, a good time had been had by all 50 or 60 people who attended, some I knew, some I had only met that day in my travels through the hospital halls, and whose cars at one pointed wrapped the street next to my house down one side and filled the cul de sac on the other. It looked like that scene from Field of Dreams where all of the cars showed up at the baseball field. “If you invite, they will come.” And they did. Leaving me with a huge bowl of pink lipsticks ready for a good night’s sleep.
My posse and I arrived for day one of chemotherapy. Time to meet the new oncology doc and get this show on the road. Me, my wusband and daughter, our pastor, my mom and my neighbor all crammed into the waiting area. Then they took me back first, and in a few minutes, my wusband followed. On his way, he was met by a woman wearing a white coat with her name embroidered on the pocket who claimed she had been to med school and who, violating HIPAA, spoke to him before speaking to me about her plans for my (mis) treatment.
Immediately following her introduction to me were these words. Mind you, it had only been a couple of weeks since my lumpectomy. “Your cancer is back. It’s in your breast, your liver, your uterus and your ovaries. While it is incurable, it is treatable. We can make you comfortable for two years, using the drug Taxotere.” I could only wish that this shock came from a toaster dropping into my tub, but no. Not only was I just pronounced soon to be dead, but the drug she named to “make me comfortable” was a word I had heard once before.
In the midst of all the jargon and staging and planning in California, the one thing that got through to me was the result of my tumor assay, which is the process they use when they cut up the tumor and test various toxic cocktails to see who the best ones are for the job. And the one drug that my tumor essentially said “F*** no, I won’t go” to was her pick- Taxotere.
I had California on speed dial and after Jane, my surgeon told me “she didn’t have confidence in what the doctor was telling me,” I acted quickly because if any cancer cells were floating around in me, they were fast suckers and I was nervous. While I stood in line for stand by boarding from Tulsa to Orange County, CA, I prayed to God, “Please get me on this flight.” When my name was called I boarded to seat 1 A.
Across the top of my chart, my first oncologist in California, who actually went to class looked at me calmly, then looked down at my chart, and then popped his head up when he realized it was me. “What are you doing here? You are supposed to be starting chemo in Oklahoma!?!” Incredulous in his affect and tone, while trying to remain professional, he got on the phone with the diagnostic department. “The doctor over read her chart.” His words to the diagnostic center (I think it’s code for “some doctor f**ked up here”) where I would spend the next four days, drinking barium smoothies, getting injected with contrast fluids, having my ears plugged to drown out the hammering of the MRI. Four days where my 9 out of 9 for aggressive cancer, if there were any crumbs left, was throwing a party at my expense.
On day five, I was cleared of all counts. My liver, breast, ovary and uterus were merely annoyed and insulted that someone would call them cancerous. And the death penalty was off the table. Now I had been given a prognosis with better odds, a first round of chemo and a plane ride back to Oklahoma to get back to my “new normal” life as a cancer patient.
And that woman in the white coat in Tulsa? That was in the (mal)practice of prescribing toxic drugs? I could not find her. And believe me, I looked. She was off the grid. I intended to file a complaint, with the hope that she wouldn’t (mal)practice on anyone else. And I said a prayer that whoever she did serve in her illustrious career might be someone across the counter at the food court, as she sported a tall, stupid hat, selling hot dogs on a stick.
During the early part of my treatment, Bob Losure was there for me. Former anchor at CNN, Bob had worked with my sister in television in Tulsa back in the 70’s. Bob was also a cancer survivor, so he knew what it was like. All throughout my treatment, Bob either called, emailed or visited me, inspiring me with his words of hope and encouragement. It didn’t hurt to hear them in that beautiful satiny broadcast voice. He interviewed me for a story he was doing about cancer and survivors.
Next was radiation. Another burning process. This time, burning tissue, leaving it hard in the aftermath. The recommendation for my flavor of tumor was 35 rounds, 5 days a week, over 7 weeks time.
By this time, it was winter, and I was bald, tired and very depressed, so after 6 rounds of laying on a sterile steel table, wearing nothing from the waist up but a creepy screen mold that was shaped like a torso set over me so that they could aim the xray guns at the small tattoes I now had dotting my upper body for precision of their sharpshooting, I did not want to complete the radiation. Honestly, that compromised position made me afraid I might have some kind of memory of abuse because it had gone on in my family and I just didn’t want that information at that time.
It was a Friday afternoon and I had just come home from round number 6, when I sat on the floor of my brand new dining room, (we built the house against the advice of my primary care doc and friend Marilyn Culp because I thought I needed the distraction) and the phone rang. “Lucinda, it’s Jane.” My surgeon from California who had saved my life once already by cutting out that tumor and a second time when she told me on the phone that she did not “have confidence” in that cancer of an oncologist.
Her call was divinely timed, although I was a little mad at her, because when we first made the pilgrimage to Fountain Valley, California to the Women’s Breast Health Center that had been recommended, I had BIG plans to come home with BIGGER boobs than the ones I left home with. She was too good at her job, coming to tell me after surgery, “Good news! You are cured with breast conserving lumpectomy!” I was both relieved and disappointed. I think my first wusband’s message to me at the age of 23 that he thought I needed larger breasts had stuck with me all those years. I even had a Hooter’s T shirt that was autographed by the wait staff wishing me well on my trip and treatment.
“How are you?” Jane said. She let me call her Jane because California doctors like her, whose esteemed medical family have streets named after them in Long Beach can do whatever the hell they want.
I explained that my mood was not good. An underlying concern throughout as I showed up on her table with a significant history of major depressive illness. I also let on that laying there for that radiation was playing games with my head as I felt vulnerable being naked from the waist up and not free to move. “I don’t want to finish the radiation.” I told her, knowing in my heart of hearts that I could not take any more of that. “What do you want to do?” She asked, to which I did not miss a beat in my speedy reply. “I want to have a double mastectomy with reconstruction.”
I could have stopped there. At lumpectomy and chemo. On paper, I was “cancer free” the day I left a tumor in a ziplock bag somewhere in a dumpster in Orange County. And the chemo most certainly did a number on SOMETHING. But the prudent measure was not to stop there.
I had done much reading and the consensus among women with breast cancer who, in some cases, were in the medical field, was to go ahead and have both breasts removed to reduce the chance of recurrence because statistics were higher for metastasis when the breasts were left behind. I later learned of two cases of women who, like me, were deemed “cured” with lumpectomy and chemo, but in both cases, the cancer returned and the women did not survive.
The reconstructive procedure that I chose, after the breasts were removed, is called a pedicle TRAM FLAP reconstruction. In a pedicle TRAM flap procedure, the surgeon cuts a section of skin, muscle, fat and blood vessels from your abdomen, tunnels the tissue underneath your skin to its new location, and uses it to form a new breast mound.
In my words, what happened to me was this. Over a period of six hours, four doctors would have a part in this. The general surgeon came in first, removed the breasts, leaving the surface skin. Then, enter the plastics guy. He is the artist. You don’t need a bedside manner with this one. You need someone who thinks they are God and performs to the best of their ability. And I got that in spades. What he did was make a big cut across my abdomen in the shape of an elipse, then take the tissue and muscle there, divide it up and going under my own skin with it, he moves it up from my abdomen and into place under the top skin that remains where the original breasts once were. And if you are cringing here, sorry. But this is my story. And it is quite amazing.
While the procedure was a technical success, the recovery was from hell. At six weeks post op at home, where I was sleeping in the recliner because I could not lay down yet, the pain was severe. And because of my mental health history being part of my record with the plastic doc’s office, he was all but too eager to say hasta manana to me when I hit their magic six week mark. “Our patients don’t have pain at six weeks.” The dismissive words on the phone from his office as I was left on my own to find a solution to some very real pain that resided in my back.
It took two years from that point to find my solution. I was led down the pain management hallway, treating the symptom but never the problem with fentanyl patches for a large part of that time.
Nothing was working. And the reason I was hurting there was that I was literally stuck. To myself. Yes, you can laugh if you know me. I was stuck on myself. The pathway that my abdominal tissue and muscle had travelled along my mid section from my well earned tummy tuck to my abdo boobs, as I like to call them, was full of scar adhesion. And this made standing up straight and upright completely impossible. So my 5’10” frame was working against gravity for all of that time, until finally, somehow, because there is a God and I am not him, I was directed to the Cancer Treatment Center of America for what is called myofacial release. A most gentle and gradual process of a massage therapist gently coaxing my innards to let go of each other, where they were holding me down so that I could join my fellow upright apes.
I survived. And today, I thrive. 18 years. July 18. Cancer free.
If you are reading this and you are a woman, or if you have a mother or a sister or a daughter or someone you love who you don’t want to lose, ask them if they are taking proper care of their girls. Mammography has come a long way. I learned that some women know that they should go, but they fear the discomfort that might come along with that. My reply? DO IT ANYWAY. The pain of your absence in the lives of your loved ones if you are lost to this far too common form of cancer could be prevented.
There is much more to this story, which I am telling in my book. But for my purposes here, I want to list the gratitude that I take away from my experience of having had breast cancer.
I am grateful for the oncologist who taught me to trust my instinct over someone who is quite literally practicing at their craft. She did me a favor. I have no idea what went so terribly wrong with her interpretation of my medical records, but had that not happened, I would not have seen the need to be my own BEST advocate for health and medical care. Those who, even well intentioned, practice medicine, are just people. Who went to school and got training. Don’t get me wrong, I am not dismissing the expertise of some doctors, but not ALL doctors are worth their salt. And they are ALL human. The lesson here? Trust your gut. If it says, “What this doctor is saying to me doesn’t sound right.” Listen to that still small voice. And run like hell for a second opinion.
The plastic surgeon also did me a favor. When he dismissed me and my care with the insinuation that my pain was “in my head”, it drove home for me that when a person has a mental health diagnosis on their chart, some doctors don’t want a thing to do with that. I didn’t go to med school, but I have noticed that the human head, where the mental health or sickness resides, is a part of the physical body. But hey, nobody asked me.
This was not the first time I had found myself being dismissed by a doctor with the coincidence of my chart including a mental health diagnosis and the blessing in that was the education to the fact that some doctors don’t care. Stigma is a powerful thing.
The first doctor who dropped the ball on my care over mental health issues was the man who delivered my daughter. I suffered with tremendous postpartum depression which required hospitalization after she was born, which rendered me virtually unable to take care of her. For that entire pregnancy, my resounding concern out loud with the OB/GYN doc was that I was ripe for the picking to have some kind of major depression after childbirth, based on my history and the research I had done on postpartum depression and psychosis. I had a reasonable expectation that he would support me in my care after her birth. And I was wrong, as he too, dismissed me at that magic six week mark. I guess that is a time frame that specialists get to use to decide when they can dump people who are too much work for them.
I am even grateful for the cancer. And while, at times since, I sometimes forget that I got another shot at life having survived it, it is proof in my book that God wants me here for something. I lived through it, and since it is far too common today for people to get breast cancer, I know I did not suffer in vain because I can share my story in the hopes that it will enlighten others to see what they might expect and also what they do and don’t have to tolerate from the doctors along the way.
I am grateful for the scars that I have. My scars have made me feel unfinished all these years. They have been difficult to live with as I don’t look the same. Over the years, the scars have faded quite a bit, but I still have a long one across my abdomen and scars on both breasts which I intend to have tattoo art done on at some point as I, an artist, am my most precious canvas. Bottom line? These scars are battle marks. And I won.
And when it comes to intimacy, it has been quite a vulnerable thing to have to prepare someone for the scars that contributed to the ending of the intimacy in my marriage of 24 years. That left a mark of its own. But it has all forced me to find a self love that goes beyond skin deep. In that respect, these scars are a thing of beauty because without them, I may not even be here.
If you find yourself with a diagnosis for breast cancer, remember that you are paying the doctors to provide you a service. Coming to an end are the days when the doctor is the authority and final say. You have always got a choice in how your care will go. Do your homework. Learn all that you can. About your diagnosis and your treatment options. If you don’t trust your doctor, find a new one. Your life may depend on it.
Find people who have been through the kind of cancer treatment that you may be facing. The American Cancer Society is a great resource for pairing people up with those who have been through that same type of cancer and the resulting treatments. I had two people matched to me as mentors for when I faced chemo and my double mastectomy. They were great comforts to me for the fact that they had survived what I was facing at a very scary time.
One of my doctor’s (I have one for every orifice at this point) said, as I look to find a replacement in my new home out of state, that a doctor/patient relationship is not a dictatorship. It is a collaboration. And should be a relationship based in a mutual respect. Especially in matters of life and death.
I don’t have a problem changing doctors as I age if I feel I am not both respected and well cared for. You wouldn’t take a Maserati to Joe’s Garage, and aren’t you worth the best you can find? I think so. Life is a precious gift. And so are you.
At the beginning of 2019, I rejoined society and my primary sober support group after a year of crippling grief and depression at the ending of my 24 year marriage had caused me to be home bound. I was still healing and the light of the world was bright. I left my house with chronic pain in my neck and hips and some lingering depression in tow when I was struck with a random idea for a way to find some comfort in the midst of my own healing. The idea, which I believe came from whatever or whoever made me, was to buy those little stars like we got in school for gluing macaroni to a flimsy white paper plate in art class, and give them out randomly to whoever crossed my path during my day.
In many cases, I would post to Facebook proof of my “starring” under the heading of “More Stars For Stars.” I just found myself telling this story to a friend, so I thought I would share it with you.
It was a warm spring night in Tulsa, Oklahoma. I was leaving the church basement after my sober support group. The parking lot was overflowing because the Tulsa based program of Women In Recovery was hosting their graduation at the same church. Women in Recovery (WIR) is an intensive outpatient alternative for eligible women facing long prison sentences for non-violent drug-related offenses. Operated in partnership with the George Kaiser Family Foundation, WIR works closely with the criminal justice system and various community partners to ensure program participants receive supervision, substance abuse and mental health treatment, education, workforce readiness training and family reunification services.I had to park a few blocks away in the neighborhood.
As I walked back to my car, there were about five or six women who were at the bus stop, sitting and standing in the thick green fescue grass. I was moved to give stars, which I did, seeing that same sparkle and shine in their eyes as was in the little blue and green foil stickers on my fingertips as they transferred over to big smiling faces. My feet did not touch the ground the rest of the way to my car. There is more to this story, so keep reading, unless you don’t want one of those goosebumpy moments when you can’t help but to say “Awwww!” out loud.
At first, I focused on groups of friends that I hung out with. Large groups for dinners. I would pull out my sheet, go around the table and give each person a star. In many cases, the stars would land on a cheekbone or forehead.
Most just received joyfully. There were a couple of people out of the ten thousand plus that I calculated I have given stars to who said no. That hurt the first time. I took it personally. But then I remembered that it was not about me. And that left me just feeling sad for those who could not receive. For whatever reason.
The next photodump is of friends, co workers and service people like grocery store workers, wait people and fast food workers, with a few beach going tourists, girl scouts and T.V. reporters peppered in for good measure. They all have a star on them, either on their face, hand or clothing. Service people seem to be the most moved by being acknowledged. I think they often feel unseen.
When asked, “What is this for?” I say in all earnest, “You got out of bed this morning. And that takes courage.” I know, first hand, that on some days, just breathing in and out is the best I have. That was all I could do for the year I was homebound. Thankfully, that pain subsided. But in the midst of it, I could not see daylight. And considered suicide.
You never know from the outside with a person what is going on on the inside. And while this all began as something to make me feel better, it became so much more.
I used to go to McDonald’s every week for happy meals that I got to share with my art making friends. At this particular store, they employ felons who have done their time. I have looked at faces that were pointed to the floor and watched them change when I give them a little gold star. “This is for you. Have a great day!” What I see after that is a hung head raised up. And a light in their eyes that belongs to that five year old inside. Followed by a huge grin. It’s like watching the sun come out. It sure lifted MY spirit. Times 10,000.
I work from home and sometimes that can get lonely. So I would hop in my car, and head down the block to Whole Foods where I buy my dark chocolate bars. I used to drink. Margaritas come to mind. The tequila sure to alter my mood for the better, at first. That usually ended up with me losing things. Like my car in the parking lot. My virginity. A marriage. And almost, my mind. Chocolate is way better. But giving out stars there to Debra Hanigan and the crew, was the BEST high and I knew where my car and my mind were when I left! I swear Debra lived under the counter at register 5. She was ALWAYS there. Smiling and coaching me on the best chocolates to try.
I did have to hunt down Sara Cunningham though. As her co workers started to accumulate stars on their nametags, she was not on the front lines and therefore had yet to get a star. So like Allen Funt of “Candid Camera”, I gathered intel as to what aisle were the Sara Cunninghams on, tracked her down and gave her several stars to make up for the lack.
I spent all of February 2020 solo in Destin, Florida speculating whether moving here would be good for me. (I did. And it is.) Giving out stars as a stranger in a strange place gave me a sense of community. Of course, there was a woman named Star at the grocery store there!
Since March 2020, my stargiving has greatly reduced for obvious reasons. Frankly, I was afraid to touch someone in order to hand them a star. I pick up my groceries curbside at WalMart and those people are busting ass busy as the world has a new order for safe procurement of food goods. But I found a way. I would put the star on the edge of my side view mirror and they would take it from there. And I got that smile and enthusiasm in their voice as they thanked me.
Okay, here it is. The end to the story I started at the beginning. I did this because, and my daughter could recount many Christmases as evidence to the fact that I like to save the best for last. And make the recipient wait. As long as I can.
It was October, 2019, several months after I gave out stars to the Women In Recovery who were standing at the bus stop outside the church. I was checking out at a Dollar Store where I had never been before. It was my second Dollar Store stop to pick up the remaining glass star shaped dishes to make 20 total, for centerpieces that I was making for a big anniversary dinner at my sober meeting place at that same church to be held at a later date. As the girl was ringing me up, I got out my sheet of stars and peeled one off for her. “You gave me one already!” She said, as I giddily stuck my finger towards her. Puzzled, I replied, “I have never been in this store before.” Not taking no for an answer, the young woman excitedly grabbed her key chain, revealing a key tag with the letters NA (for Narcotics Anonymous) on it. And over the NA symbol was a well worn silver star. “I graduated from Women In Recovery six months ago! You gave me this star at the bus stop! I have nine months clean!”
You never know what a random act of kindness can do for a person. I know what it does for the giver. It keeps me going at times. And without fail, it always lifts MY mood for doing it.
(Parting shots and warm fuzzy memories follow here.)
I am reflecting on my life. Surrounded by boxes waiting to go to Florida after living in Tulsa, Oklahoma for most of my 60 years on the planet, it seemed fitting to share my thoughts out loud.
I graduated from high school at Monte Cassino School in Tulsa. At the time, it was an all girls school. It was May 1977. And this was our senior song:
The Circle Game
written by Joni Mitchell
“Yesterday a child came out to wonder Caught a dragonfly inside a jar Fearful when the sky was full of thunder And tearful at the falling of a star And the seasons they go round and round And the painted ponies go up and down We’re captive on the carousel of time We can’t return we can only look behind From where we came And go round and round and round In the circle game
Then the child moved ten times round the seasons Skated over ten clear frozen streams Words like, when you’re older, must appease him And promises of someday make his dreams And the seasons they go round and round And the painted ponies go up and down We’re captive on the carousel of time We can’t return we can only look behind From where we came And go round and round and round In the circle game
Sixteen springs and sixteen summers gone now Cartwheels turn to car wheels through the town And they tell him, Take your time, it won’t be long now Till you drag your feet to slow the circles down And the seasons they go round and round And the painted ponies go up and down We’re captive on the carousel of time We can’t return we can only look behind From where we came And go round and round and round In the circle game
So the years spin by and now the boy is twenty Though his dreams have lost some grandeur coming true There’ll be new dreams, maybe better dreams and plenty Before the last revolving year is through And the seasons they go round and round And the painted ponies go up and down We’re captive on the carousel of time We can’t return, we can only look behind From where we came And go round and round and round In the circle game.”
My years have spun by 60 times. And the majority of those have been here. In Tulsa, Oklahoma.
I arrived at age 12. Not real happy to be here either. I was born in New York where I lived until I was 5. Then we moved to Connecticut where I lived from 5 to 9 and where, at age 7, my dad died unexpectedly at the age of 42. He was my first best friend. Two years later, my brother and sister were out of the house and it was just me and my mom. She liked the song “You and Me Against The World” by Helen Reddy for us, as it was just the two of us moving forward.
I was promised a move to Ft. Lauderdale, where I was to go to school with children from all over the world, only to find my mom detouring to her old home town of Taylorville, Illinois and then Springfield, Illinois from the age of 9 to 12. And from there, we moved to Tulsa to be close to family as my siblings were in college in Oklahoma City and one of my dad’s brothers and his family were in Tulsa.
I was not happy here. I loved the beach as a child. Learned to swim in salt water at the Larchmont Yacht Club in New York and played at not getting caught in the undertow at Jones Beach. Toe headed blonde with a constant sunburn and smile, I was a beach baby. And while Oklahoma boasts the most shoreline in the US for it’s numerous lakes and such, I am a salt water snob. When people ask why I came to Oklahoma, I like to say that my mom made a wrong turn on the way to Ft. Lauderdale.
Don’t get me wrong, Tulsa people have been good to me. My complaint is one of geography. And as I age, the winters are hard on me. Between the short days and colder weather, I suffer with chronic pain and seasonal depression that just get harder each year during the winter months here.
My first brief exit from Tulsa was to Trinity University in San Antonio, Texas at the age of 17. I had big dreams of finding myself, making lifelong friends and living happily ever after.
None of that happened. After four weeks total, I withdrew from school. Because I was ill prepared for the realities of life away from home in a fast lane of sex and drugs and alcohol and academia that was way over my head in a matter of days. I was afraid of the partying, I was a virgin and while my test scores showed my intellect worthy of admission to this prestigious private college, my practical skills lacked when I tried to apply myself.
When reading became crucial in my prep school where I was for most of my high school, I know today that I was not able to learn by simply reading from a book. I could not pay attention. The science and math and history all just bounced right off my brain when I looked at the page. They suggested speed reading as my grades began to suffer, but that was not the solution. I now know that I have a different learning style and an attention issue. I learn by experience. There are now schools called demonstration academies for people like me who require a different way to be educated. Sadly in the 1970’s, they only had so much information and boy did I suffer for the lack of that. I have a brilliant mind, based on ACT and SAT testing, but I could not access most of it with the conventional styles of learning. I have spent most of my life feeling stupid and hopeless for that.
Looking back, I now know I was in the grips of a severe attention deficit disorder that had never been labelled or addressed, a crippling anxiety disorder that made walking to class excruciatingly frightening, coupled with a burgeoning eating disorder that I had honed all summer, losing weight to “fit in.” What I couldn’t do anymore was fit in to my swimsuit bottoms because I was entering anorexia and they were falling off at the pool.
At 17, I returned to Tulsa barely able to function over dreams dashed and I began my career of being a floundering human being and drinking and eating to relieve the pain. I got really good at all of that. I waited tables to survive, drank a lot and at 19, I escaped Tulsa for the second time to the mountains of Colorado. My private school friends had all been skiers, and I had never seen the mountains, so I decided the best way to see what that was all about was to move there.
One year in Colorado and lots of fun times skiing and drinking when drinking was fun led to a summer from Hell in Lake Tahoe working at Caesar’s where there was an even faster lane than college. It was 1981 and cocaine was all the rage. I was a pit clerk in the casino. Keeping track of the high rollers who played with house money. Hailing from Mexico City and San Francisco, these people had credit lines of $500,000 to $2 million. And when they came to play, the big boys from the cat walk above me came down to the pits to breathe down my neck while watching the big money players.
The mafia is alive and well and I wasn’t, so I moved on to Houston, Texas for two years, got pregnan the first time I had sex, had a miscarriage, got married, then moved to Austin and hit bottom with my drinking and ended my brief first marriage to my first wusband. All of this Texas drama took place within four years.
It was from there that I crawled back to Tulsa in my first year of sobriety. I was newly sober, freshly divorced, unemployable due to crippling depression and I was just 25.
I stayed in Tulsa then until I remarried and we moved away to Pennsylvania for my second wusband’s job when I was 32. That lasted a year and while we aimed for Austin to get out of the Dutch Country where they only like you when you don’t bring a moving van, the jobs were in Tulsa, so it was back to living on Tulsa time one more time.
This time, for 28 years, which leads me to now. As I aim my car south, the phrase “Never say never” comes to mind as I see the pattern of returning to Oklahoma from wherever I go.
I am pointed to Destin, Florida. The Emerald Coast. And for good reason. Or I could be corny and say for God reason. Because that is what it is. I am led by my spirit to go live at the beach.
In September, I was grieving a romantic loss and I found myself spending four days at a work retreat on the beach of Miramar in the panhandle of Florida. Literally in a house on the water, I found great healing in those few days at the beach where I become right-sized just by opening my eyes and ears to the wonder of the sun, sea, sand and horizon. And these beaches are white and go by the name of The Emerald Coast because of the emerald green waters. As an artist, I see teal and sapphire and periwinkle and pink in those skies and waters. My favorite palette to make art with.
When the winter hit a couple of months later back in Tulsa, I was not happy. The short days coupled with the cold weather which made it hard to go outside without hurting just made me bitchy and sad. “Go get it out of your system. Find out if it is meant for you to live there.” Wise words from a friend over dinner at Christmastime as I was dimmed by the lack of a charge to the solar panel in the top of my head. This was made worse by the fact that the relief I get from my chronic pain comes from being outside in nice weather and moving.
So I went on a pilgrimage. Rented a tiny house three blocks from the beach at Miramar, Florida (which is basically Destin,Florida) and off I went with the back of my SUV packed with art supplies and belongings.
I spent every morning at the beach. Two hours, give or take, in most cases just me, with maybe a dozen or so snowbirds from up north who would be there when God turned on the lights. I took dozens of pictures, communed with the sea birds and wrote my gratitude in the sand. I even made a sand angel in the sand. Like when we were kids with snow in Connecticut, only way warmer. I laughed as I lay there. Flapping my arms up and down. Mindful to be sure that I pushed hard enough to make an impression. The beach patrol drove by and gave me a wave as he smiled real big. Their version of winter worked for me as my daughter sent photos of her freshly built snow woman, complete with hot pink spray painted boobs from my back yard in Tulsa where I was happy not to be.
I now understand why people move to Florida when they grow older. Their bodies ask them too. At least that is what mine has done. And so has my spirit. In fact, I did not want to uproot myself without being sure it was divinely ordered as I try to live by whatever my God has planned for me. I do believe there is a plan for me. My job is to listen for what that is on a daily basis. And when I pulled back into my Tulsa street on March 1 after a fourteen hour drive back, I felt a resounding “This is not your home.” As if God all but spoke the words.
I have plans when I get to Florida to help female felons perhaps get their own businesses going. I am moved in my spirit to do so, using my talents with furniture painting to teach those women who have done their time but can’t get a break because an F word follows them for the rest of their lives.
I also plan to finish writing my book. Something that I have also felt moved to do. With the intent of offering hope to the hopeless for things I have endured and survived and live to tell about which when I do share, I have been told that I help people.
I got really into writing during my #covidvacation, learning that sitting for great lengths and remembering can be painful. So I will return to the writing with breaks to paint and play at the beach once I get settled in my new place.
It’s funny. I started this meaning to pay tribute to Tulsa and my experience here. And this is what came out on the keyboard. I am just a channel. It really is not up to me.
And while this time feels different, I know that Destin, Florida is my next stop, but my intuition says it may not be my last.
So Tulsa, I won’t say goodbye. Instead, since my daughter’s current return address has a Tulsa zip code on it, I will simply say “See you later.”
I can’t find my friend Sheila. The one with the Texas sized heart and smile to match. Have you seen her? She is about 5’5” dark brown shoulder length hair. I have tried to reach her, but it’s hard to get through. The phone sometimes goes unanswered for days. And when they bring her to the phone to talk to me, I don’t hear the same vibrant, cocky, sarcastic, self effacing friend of over thirty years.
L osing her battle with
We met over thirty years ago. I liked her instantly. She was playful and childlike with two grown sons. Her Texas born smile and heart made truth of the slogan that “Everything Is Bigger In Texas.” We had a common bond in a fellowship of mutual friends all over the world who seek a spiritual life. But it was MY world that Sheila walked into and I am so glad that she did.
I was in my late twenties which would put her in her late thirties or early forties. We laughed at the same things and had a bond like sisters or schoolmates who routinely get sent to the principal’s office for disrupting the class. That was my attraction to her. She could be serious when it was required, but she didn’t take herself or anything TOO seriously. Rule 62. That would have been the sign on our fort’s door if we had played together as children.
Sheila was the divorced mother of two strapping good looking young men in their early twenties. Toe headed surfer boys, living in Hawaii with their father. I got to meet them. They both had their mother’s bright smile.
At the time, Sheila and I were both single. She was dating someone she loved for many years while attending school to get her Master’s degree so that she could teach English, paying her way through school as a massage therapist.
Sheila was friends with a guy I had dated and broken up with and when he was about to have a date with someone else, Sheila let me know it and when she did, I called him. We resumed our relationship, which lasted 26 years before we divorced and had Sheila not tipped me off, there would be no 22 year old brilliant, witty, compassionate, beautiful daughter in my life, perhaps, had it not been for my friendship with Sheila.
When I was first married, Sheila came to live with us for a time before we had our daughter. Then life happened and we drifted apart. Sheila stayed in Tulsa, while we moved off to the suburbs of Bixby, had the kid, built the house, bought the van, got the yellow dog. And Sheila got her degree and taught English for about 15 years.
Sheila and I reconnected about five years ago. Literally ran into each other at the doctor’s office after about 15 years or so. She was not the same Sheila. She had put on 75 pounds which in my view was the exact weight of the grief and the loss she had suffered since we last saw each other. There was a sadness enveloping her. The sparkle was dimmed. And when she explained why, it broke my heart.
Sheila had been diagnosed with dementia. She explained, “I found myself losing my words in the classroom as I spoke to my students.” In addition, her sons had both grown up and developed severe mental illness. One, middle aged and living in a group home where she would see him regularly. The oldest had not been heard from in ten years. The last she knew, he was living on the streets of California. My heart broke at the news. First, that my friend had dementia and add to that that the two healthy, strong happy boys I had met had succumbed to the ravages of mental illness made me very sad for Sheila who upon this meeting was still teaching English part time and living alone in a one bedroom apartment with her cat. We traded sad stories as I was in the throws of depression going through my divorce after 26 years. And I was so glad that God had put her back in my path.
We began to see each other, when I could coax her out of the apartment. Sheila had become an introvert and at times more of a hermit. She could only take people for so long before she had had enough and was quite content to return to her cat and late night television.
And while Sheila was teaching students how to write, she was right for the job because writing was Sheila’s bliss. Quirky poems and prose that were over MY head, but it was indeed her gift. She had submitted her work to be published, but had been rejected and was timid to re submit the contents of the manilla envelope that sat on her kitchen table surround by small piles and lots of chotchkies.
Sheila was tenacious, precocious, gifted and blount. Don’t ask if you don’t want to know. And I loved her for that. She always told me the truth. Even when I didn’t ask. That’s a REAL friend and a rare find. On one of our dates, I had her over for dinner. She brought cookies, we ate and then watched a movie with Robert Redford and Jane Fonda about two widowed people who took solace at night sneaking into each other’s houses and sleeping together in a small, nosy town. We looked like Golden Girls folded into our places like two human tacos, as the most comfortable seat for the viewing was on my king sized bed with adjustable mattress. I will always treasure that night.
That was about three years ago. Then the phone calls started. “Are you awake?” She would say as I answered from my sleep at 5 in the morning. “Yes.” She didn’t really have much to say, just wanted to call. She was beginning to be less mindful of such things as time and timing.
Then the disease in her beautiful brain began it’s progression. Sheila was having trouble with math. She had been an accountability partner to me as we both had spending issues in our histories and she was tremendously helpful to me in that way for several months. And I had become a part of an audience to a show that I never bought tickets to. Alzheimer’s progression in a person I loved.
Over the months, her driving became difficult. She would insist she could drive. Then one night, on her way to my house, I got a frantic call. So I went out in my car, as she struggled to find the words to give me crosstreets or landmarks to lead me to her location in my neighborhood. When I found her, she followed me to my place and then limped her way home. Eventually, she had to give up her car as it was no longer safe and she was told not to drive, but would forget and drive anyway. That, or she was just being belligerent and wanting a Jamoca shake from her neighborhood Arby’s. The answer to which, I will never know. Because I may never see her again.
A year ago, I moved from my home in South Tulsa to a house four blocks from Sheila so that I could be a support person for her. Living alone in Tulsa with her family in Texas, I wanted to be there for her when I could. I was fortunate to make the cut, as Sheila had cut off at least one friend for being negative and heavy. That was NEVER an issue for me and Sheila. We continued to have lots of laughs, even at her condition. But the disease was marching on. And now she was almost agoraphobic. I did stand up comedy at a local coffee house before she stopped driving and she had come to support me. Before the show was over,( there were about a dozen acts in a room with about forty people), Sheila was somewhat panicked to be there. I think the stimulation was too much for her.
Whenever we went places, she was hypersensitive to sound and speed. Grabbing the dash when I went the speed limit, saying I was driving really fast. And her hearing was quite sharp too. If I ran water on the phone she’d say things like, “What’s all that racket?”
Then Covid19 came to town and Sheila was in for the perfect storm of stressors that healthy brains were struggling to cope with. No longer able to see her son because of Tulsa’s orders to “Shelter In Place,” he was not happy with her for what he could not understand and Sheila’s isolation had now become mandatory. Prior to Covid, Sheila had been getting out a few days a week to go meet our fellowship of friends. I was one of a few who would drive her to meetings and we would laugh our asses off in my car being silly and inappropriate together. But early this spring, that all came to a screeching halt.
And when I would call to check on her, she struggled to communicate and make sense. “They are saying that I can’t go outside.” She would say. So I checked with her family, and I went to get her out of the house. Fuck Covid. My friend was withering in her apartment. The only people she was seeing were her home health aids for a few hours a day. I took her to the Riverparks and we were both tense. Looking at a playground that was roped off with caution tape because there was an invisible serial killer in town. So we simply sat on the wall and watched the passersby. Sheila was visibly anxious, which made me so sad for her.
The phone calls became earlier and more frequent. Some coherent, some not. 5 am. “Are you awake?” The reprise that had become a routine. We would talk until she was done. Then it got worse. 3:30 am. “Lucinda?” She said in a whisper. “There are men in my apartment. They are going through my living room. I have to go.” Then she called back and spoke in her normal voice, saying that they were gone now. I was getting worried.
Sheila had begun to wander out of her apartment and go talk to her neighbors. I learned this after the only other time I took her out during the “Shelter In Place” order. I was going to pick up my curbside groceries so I made a date with Sheila to go get fried chicken and get my groceries. We drove thru KFC, laughed our way through two boxes of fried chicken and biscuits with honey and in our conversation, Sheila was in and out. I likened my conversations with someone who was losing their mind to Alzheimer’s as if she were a kite. With a normal conversation with someone not ill, I always knew just how far out from me the kite was. It maintained a steady path. With Sheila, one minute the kite was within reach, the next stuck in a tree. It was painful to be present for. And I’m not proud to say this, but some days, I was selfish and was not there for her because I didn’t want to bear witness to what was happening. I regret not creating a day that was just us while she was home. It was an idea that came to me that I did not put into action.
On the drive to the grocery store, he could see people who weren’t there. “Do you see that little person in the yellow pants?” She said calmly when there was no one there where we sat waiting for my curbside grocery order. And I was respectful in all of my replies. Always honest and matter of fact. “No Sheila. I don’t.” In my car, she saw people on my dash in the drive thru at the pharmacy, knowing that they weren’t there. Narrating her experience in front of me. “I see them but I know they aren’t there.” And we would laugh as we do, together, but when I took her home it was no longer funny.
My friend was getting sicker right before my eyes. After I got her into her apartment, which was quite a feat because she could no longer figure out how to put her key around her neck into the lock, I watched her take her evening medicine and I left feeling powerless and concerned. On my way out, I was stopped by the handyman who told me that she had gone to several neighbors asking them to help her get the people away from her who were following her. In one case, she had packed a bag and sat on her step, telling the upstairs neighbor that her sister was coming from Texas to pick her up, which was not true.
It never got better and she got mad at me because I was frightened for my friend and I sought wise counsel after learning that at some point she had wandered into a busy street found by the police thinking that her remote was her phone. They brought her home, which I later learned would never have happened if it weren’t for a pandemic. In a normal scenario, they would have taken her somewhere to be safe. I later called an ambulance after the phone calls got worse because while she had some home health care daily, there were still a number of hours that Sheila was alone, just steps from a busy street and I feared for her safety. Her family was in the process of getting her into a nursing home, an uphill challenge to make happen with a pandemic picking up steam. The advice that I got was to get it on the record that she was a vulnerable person by having the emergency crew evaluate her mental status to be sure she was safe to be alone. Naturally that frightened her. I arrived when they did, before I could tell her I had called them. And while she was confused about some things, being pissed at me was something she was very clear about. I left her that day. And have not seen her since. I believe that was at the end of April of the beginning of May.
Her road has been hard since that day. Shortly thereafter, she had to be hospitalized for psychosis and then was placed in a nursing home and when I was finally able to get someone to answer and bring her to the phone, my friend Sheila, as I knew her, was not present. Flat affect with some nonsensical babble, there was a clarity peppered in when she responded to me saying that I loved her, and she let me know she was not happy with me. And I think that was a clear thought. Which made me really sad. To think that her last memory of me would be one of feeling hurt or betrayed. She could not see the part where her safety was at issue. Several people who were concerned about her from her neighbors and then some had encouraged me to call for help. And I will be honest. I don’t know if I did her more harm than good. Because now, she is locked into a memory care facility where the phones don’t always get answered and the Covid quarantines are routine so that not only can she not receive visitors, she can’t even come to the phone..
I have made peace with the fact that I may never see her again as I am moving 800 miles away in just a few short weeks, but it is my prayer that she will forget about her anger for me and remember the friendship that we had before she forgets everything. The laughs. How I always saw her in the room. When others talked about her, I was talking to her. Because I respect Sheila. She is a person. With rights. And passions. And dreams. And a devastating illness. I love her. And I will miss her deeply.
Update: I posted this on July 5, 2020. On July 20, 2020 at 6:03 a.m., Sheila passed away. The week prior, she contracted Covid 19 in the nursing home where she had been placed. She was hospitalized with renal problems and signs of pneumonia in addition to testing positive for the virus. Within days, hear health plummeted. I received a text that she was on hospice, with pneumonia and kidney failure and the doctors had given her 1 to 2 days to live. While i was saddened by the news, I was not surprised. The weeks leading up to this, I tried to call her at the nursing home several times, only to be told that there were Covid positive cases there and that the residents were in quarantine. The caregiver that I spoke to on the phone said that she was confused and not terribly interested in thing s that might take her mind off the situation, like the coloring books her family and I had sent to her.
I have to say that while I had hoped to see her or at least speak to her to say goodbye, the Sheila I knew was already gone. And I am grateful that I got to have her for the time that I did. She touched a lot of lives with her child like spirit.
If you love someone who has Alzheimer’s, don’t wait. Make time for them a priority before you lose them entirely. Be willing to be uncomfortable around the disease that your friend or loved one has no choice in having. Because I know first hand, for the times that I was uncomfortable and said, “today, I just can’t,” I wish I had.