Because my eyesight is diminishing so fast, I will take the easy way out and of the requests/suggestions for a blog post before I go completely blind I will cut and paste (and comment) on an excerpt from my Autobiography.
I began writing my autobiography shortly after my mother died in 1993, as a catharsis really, a way to heal and come to grips with my childhood and all that baggage most of us who have not had great childhoods carry around with us. Now, 23 years later, there is a lot I would change in this book. (for one thing I would finish it) But perspectives change over the years and you see things so much more clearly if you allow yourself to be honest with yourself. Every life is a story. Mine may be different, but no more important than any other human being’s.
[EXCERPT FROM AUTOBIOGRAPHY]
My first memory of being alive is sitting in a playpen outside
our house in Oklahoma City. My mother was stooping over her
garden, her dark brown hair tied up in a bright blue kerchief. I
was playing with my favorite squeeze toy–a small pale yellow
rubber duck; turning it, manipulating it, tasting it. I remember
my shoes–white sturdy Buster Browns; scuffed on the toes and tied
with a double knot, for I was prone to remove them at any
opportunity. I was staring at them as I rhythmically raised my
foot and vigorously slammed it down on the un-padded bottom of the
playpen. I was fascinated by the noise, as it reverberated off the
side of the house and the bottom of the playpen shook and vibrated
with each kick.
I glanced up at my mother. She was humming, absent-mindedly;
some sweet innocuous tune–possibly a hymn; and just behind her I
could see a woman crossing the street, a small blonde child perched
on her hip. She stopped and spoke to my mother for a moment. My
mother wiped the dirt from her hands onto her jeans, leaving long
red streaks from the Oklahoma clay down the front of them. She
pointed over to me. The woman brought the child over and sat her
down in my playpen. I began to cry at first, afraid of this new
person, but then the little girl picked up a toy from the floor of
the playpen and began to quietly examine it. I picked up my own
again and resumed my thump-thump-thumping on the bottom of the
playpen. The little girl began to hum. No tune this time as my
mother had been doing; but one note, deep and continuous except for
a short pause occasionally as she caught her breath.
We did not speak, because except for a few simple words like
“Mama” and “Daddy”, neither of us knew how to talk yet. Instead
we played, side by side, the afternoon sun warm and soft on us, and
our mothers gossiped as my mother tended her garden. I know that
I shouldn’t remember that far back, for surely I could not have
been more than two, but I do, and the memory is bright and vibrant
and when I think of it I can smell the flowers and feel the
sunshine on my face.
The little girl in the playpen was Jeannie Rogers. We called
her Jeannie-Rogers, just like that, first and last name, kind of
smooshed together. She was a pretty little girl with blonde hair
and big blue eyes. Her skin was fair and clear, in sharp contrast
to my own red hair, brown eyes and freckled face. She became my
best friend all through childhood. We were considered the
“oddballs” of all the kids on our block, the perfect targets for
extensive teasing and cruel pranks. They now call it being a nerd.
Neither of us was very athletic; I was pretty klutzy and accident-
prone. We were both besieged by a plethora of childhood phobias-
–Jeannie was afraid of all animals, she said– because a squirrel
ran up her back once. I lived in mortal fear of bugs. This alone
was grounds for automatic banishment from normal kid-dom, add to
that Jeannie’s humming and my red hair and chubby-ness and we
couldn’t win. We were excluded from a lot of the group activities
that occurred daily on our street—hide and seek, tag, red rover
and dodge ball; but after awhile we didn’t care; we made our own
fun, and had a sort of pact which included a mutual animosity for
all those kids on the block that spurned us.
Our neighborhood was chock-full of children; at least two in
each house. This was most likely because we lived on the same
street where the elementary school was located. It was a
developing middle class urban area between Oklahoma City and Moore.
The houses were small, 2 or three bedrooms and no more that a
thousand square feet of living space inside. Most of them were
half brick/half painted siding or totally brick. When we lived
there it still felt like we were partly living in the country,
because there were still farmers and ranchers within walking
distance of our house. There were lots of empty lots around to use
for ball games and fort building. Today the area is still
thriving, the houses bought by the same type of people my parents
were 30 years ago—first time home owners trying to own a piece
of the American dream. All the country is gone, though; the
surrounding area has been filled up with fast food restaurants and
I never saw a school bus till after I left elementary school,
the population of kids in the surrounding neighborhood was enough
to fill the school. We were all roughly the same ages. That is,
for one child in one house, there was a counterpart in another
house down the way. For me, this was Jeannie Rogers.
She always hummed like that. Like she did in the playpen. One
long monotonal note, almost a growl; a sort of guttural humming.
Always when she was concentrating intensely on something. I didn’t
mind the noise. In fact, I spent so much time with her, that I
suppose after a while I just didn’t even hear it anymore; but the
other kids did, and they would tease her about it all the time.
She would be intently drawing a picture, or writing, and sure
enough, it would start: hmmmmmmmmmm…gasp…hmmmmmmmmmm. The
other kids would yell, “JEANNIE! Your motor’s running!” She would
cringe and stop.
I could see the teasing hurt her, so I began to listen for the
humming when we were together and I’d nudge her before the kids had
a chance to yell. She’d look over at me and smile.
Eventually she learned to control it, or maybe she outgrew it,
but anyway it stopped.
I almost always played at Jeannie’s house, my own house was
full with just my siblings and myself, and my father didn’t like
us contributing to the already ear-splitting din by bringing other
kids over to add to the noise after he got home from work.
Besides, he liked to spread out on the floor in front of the T.V.
in his boxer shorts and T-shirt and my mom wouldn’t let him do that
if there was company in the house.
I think Jeannie’s parents preferred us playing at her house,
anyway. My dad and Mr. Rogers didn’t get along. There’s a story
that’s oft repeated in our house of the time Jeannie and I were
arguing about something (I might have hit her, although I don’t
really recall the incident that well) and Mr. Rogers took it upon
himself to protect his young’un and came stomping over to tell my
dad a thing or two. It has to be explained here that Mr. Rogers
was a tall and lanky—truly a “Mr. Rogers” kind of fella (He
reminded me personally of Mr. Green Jeans on Captain Kangaroo).
My father, however, was a large burly rough looking take-no-crap-
offa-nobody guy. I used to think his hands were big enough to
crush somebody’s head in one if he had a mind to, especially when
they came flying over the front seat of the car aimed at the pack
of unruly children ducking in the back seat. Anyhow, Mr. Rogers,
puffed up and ready to kick some butt, confronted my dad in our
back yard where my father sat (apprised by me that a recent fight
with Jeannie had escalated to the point that parents were now
involved), calmly sharpening a machete. My father, it is said,
merely looked up calmly as Mr. Rogers approached, machete gleaming
in the sun and said “Can I help you Bill?” whereas Mr. Rogers,
deflated totally at the sight of my father and the knife, backed
out of the yard saying “No Mr. Burns, can’t say you can.” till he
was safely back in his own yard. This incident didn’t change
anything between Jeannie and I. We made up, and continued to play
together long after, the incident totally forgotten between us; but
not our parents.
I always thought Jeannie’s parents were a little over-
protective, but this too may have been just because mine were
sometimes so grossly neglectful. On the fourth of July, for
example, Jeannie’s dad always brought out an old galvanized steel
bucket filled with water and a large pair of pliers when his girls
lit off firecrackers. When they encountered a “dud” they had to
wait an inordinate amount of time after the thing had failed to go
ka-boom, and then gingerly pick up the offensive firecracker with
the pliers, hold it arms length away, walk over and place it
carefully into the bucket of water, like some junior bomb-squad or
something. The unbelievable thing was, they were only allowed to
light off lady-fingers!
MY family on the other hand, (and in particular, my brothers)
were notorious for dangerous and destructive acts of firework-
sabotage in the neighborhood. My brothers were Black-Cat
demolition experts. They blew up anything that could be even
remotely construed as exciting or interesting if it went BOOM.
They had Roman Candle and pop-bottle rocket wars; aiming the things
at any unsuspecting kid unlucky enough to cross their path. My
brother Paul would light and squeeze lady-fingers between his
fingers. When I asked him what they felt like when they went off,
he said calmly “like a red ant sting.” (My bug-fear kept me from
trying it out, myself) Paul would go out the next morning and
painstakingly gather up all the duds and empty them of their unused
gunpowder, he’d then light the little piles and quickly stomp on
it so it would blow up under the heel of his shoe.
So we would sit and with smirks on our faces watch the goings-
on at the Roger’s House with great amusement. Even today on the
fourth of July when we have a dud, someone will say “Get a bucket!”
and we’ll all bust out laughing.
But Jeannie was my best friend. We had our own games and
activities geared to our “weird kid” mentality. We liked to write
stories. We both were “early readers”… I began at three,
practically as soon as I could turn the pages of a book by myself.
Mrs. Scarberry, a fat, jolly-looking woman who lived right next
door to us had a brand new set of World Book encyclopedias that I
found fascinating. We had a Colliers, but the pictures were better
in the World Book, and it was put together nicer, I thought.
Besides, Mrs. Scarberry was always cooking something…most often
this was cookies, and if I stayed long enough, I usually got the
opportunity to sample a few. I spent many afternoons sitting cross-
legged on her living room rug, some massive volume spread across
my lap, totally engrossed. I would occasionally get up, my finger
carefully marking a big tough word that Nadine (Mrs. Scarberry)
would explain to me. Eventually she got sick of my interruptions
to her kitchen activities, I suppose, and taught me how to use the
dictionary. Then it was katie-bar-the door! I read anything I laid
my hands on, stopping frequently to look up words I didn’t know.
So Jeannie, who shared my love of books and words would sit with
me for hours and make up stories, write them down, and later we’d
reread, edit and modify them depending on our mood that day.
Sometimes we wrote about our dolls, usually the exploits and
escapades of Barbie and Ken. I do not believe Mattel would have
approved of most of our story-lines about their most infamous
couple, even at a young age we both were aware of the difference
between men and women and had the rudiments of sexual activity down
from exposure to various stray cat and dogs in the neighborhood.
Even though Barbie and Ken were far from being anatomically
correct, their love affair was a lot more torrid than the
We also wrote about the kids in the
neighborhood. Anyone who had teased us that week were usually
targeted to be killed in a most hideous and painful manner;
sometimes their parents and siblings with them, if we were so
inclined. Occasionally the parents would be spared, only to thank
us for saving the world (and themselves) by ridding it of their
obviously evil, ill-conceived offspring. My particular favorites,
though, were the stories we wrote about a tiny family that lived
in Jeannie’s bottom drawer. We even cleared out the drawer and
filled it with an elaborate array of dollhouse furniture and
“finds” —pretty rocks from the creek, bottle caps, empty spools,
baseball cards. We then acted out the stories before-hand in hours
of “just pretend” brain-storming, and then we wrote them down. The
stories became quite adventurous as we had the family invade other
rooms of the house; wrecking havoc in the kitchen, or in Jeannie’s
sister Myra’s room. Myra was a natural target for our little
family’s adventures–she being a sort of self-appointed leader of
the teasing brigade that terrorized Jeannie and I. Usually our
little family would sabotage her room in some way to cause
embarrassment or minor harm to Myra and her snotty friends. In
actuality this never occurred except in our imaginations as her
mother never let us have free rein of the house. Jeannie’s Mom was
a slightly overweight, kind-faced, jovial woman; who reminded me
of the television Maid Hazel, only with dark hair. She adored her
two daughters, and doted on them. I adored her. She was so
domesticated and sweet; and always had time to stop what she was
doing and listen to our tall tales. I had an awful habit of saying
“Guess what?” before anything I was about to say, and she broke me
of it by replying “Turkey’s Trot.” anytime I started out that way.
Later, she would be Jeannie and I’s Blue bird troop leader, and
she taught us to cook, (“The Number One Direction of every recipe
is WASH YOUR HANDS!”) and do crafts and all sorts of fun things
with us. She always had an idea of something we could do when we
would come in and say pitifully, “We’re BORED!”
She was a neat-nut, her house was spotless and she was always
in a state of perpetual motion trying to keep it that way. I loved
the way Jeannie’s house smelled…like washing powder and fresh
air. My own mother wasn’t the housekeeper Jeannie’s mom was by a
long shot. My mother married my father when she was barely 15.
By the time she was 24 she had already given birth to all five of
us kids. Neither she nor my dad were adequately equipped to keep
pace with our reign of destruction at our house. But it wasn’t
just that we were so unmanageable, it was that she was grossly
unprepared, and my father just expected her to know these things
innately, after all, in his view it was just part of being a woman.
I grew up knowing that the chores of women and men were clearly
designated. Men were revered. Women waited on the men and their
main job was to take care of them, to ease their burden. Later
this idea would screw me up totally as the world changed and I was
suddenly expected to think independently. I wanted to be
independent, but there was always this Donna Reed character
screaming to get out. He didn’t have the capacity to teach his
child bride what he thought she should already know.
Anyway, Jeannie and I would “just pretend” all morning and once
the story we were working on extended past the reality of her
bedroom, we would lay back on the carpet, hands behind our heads
and spend the rest of the afternoon in “what ifs” with Jeannie
playing stenographer for our musings.
At night as I lay in my own bed I would think about our tiny
family’s adventures and happily drift off to sleep. I truly wished
sometimes that I lived in her bottom drawer.
I am pretty much certain I have explained in previous posts my idea of “Pieces of my Childhood”. Perhaps a brief reiteration is called for, however.
If you live in the same town you grew up in, and also if you live enough years, you will see the town you live in change, and things of your youth will disappear. Some are as simple as a food or candy.(Anyone seen Kraft Fudgies or Post Fortified Oat Flakes the last 10 years?) Others large buildings and landmarks. (The Biltmore Hotel, Elmwood Swimming Park, Springlake Amusement Park) When one of these disappears forever I generally just say aloud: A piece of my childhood died today. Sometimes if it was especially significant I will call my sister to let her know that something from our childhood is no more. This happened a couple years back with the Redskin Theatre. This was the theatre my sister and I sat in all day watching movies over and over and over. They literally paved paradise and put up a parking lot. It was a sad day.
So recently, in Oklahoma City’s revamp of our downtown area (which I approve of for the most part, we have made significant progress in bringing our downtown area back to life.) a piece of my childhood was torn down.
I had a very wayward youth, from the age of 13 or thereabouts I was on the wrong track for 5 years, a hippy runaway homeless street person. The government called me “In Need of Supervision”. Kind of a catch-all phrase for juvenile delinquent I guess. At 16 it caught up with me and I was sent to Tecumseh Girls Town, a “Maximum Security Reformatory” for girls. I never had a clue why I was sent there, I hadn’t committed any crime, and in truth, even the folks who ran the place were confused on what sent me there. But I was there, so I made the most of it. I had never finished school of course, being a street person, and they said I could go at my own pace, so I finished 8th to the 12th grade in one year. Since school was done, I decided to enroll in some of the other elective classes they had, and chose “Creative Writing” given by a sweet woman named Patti Bivens. (I have looked for her on the interwebbies but not found her, if you do know her, point her my way.) I wrote a lot of poetry and short stories. Patti encouraged me and told me I had a lot of talent for writing. Her encouragement would lead to a lifelong love of writing.
Sometime during the summer of that year there was a Poetry Festival in downtown Oklahoma City, and Ms. Bivens got permission to take two of her pupils to attend. I was chosen as one of them. Off campus trips for girls in reform school was rare and I felt blessed and privileged to be chosen.
It was held at what was called at the time the “Mummer’s Theatre”. A very rare and very unique building (later called “The Stage Center”. ) built in the Exoskeleton Architecture style that had come into vogue in the 70’s, it was either loved or hated, depending on who you spoke to.
I loved it. Each stage on the interior was in one of the various modules. Seating was in the round, so the stage itself was in the center of the audience.
The festival was very open, and people took the stage to read their poetry. I was surprised when Patti escorted me center stage, my little folder of poems I had written under my arm. I read one which was generally about the idea of being classified in various ways by the Government. I lost this poem, but have been aware all of my life that it was published in the pamphlet or brochure/playbill that they handed out that evening. It is a regret that I do not have that brochure, and I have searched for it online at various times.
It was special to me because I got a standing ovation. It is the only standing ovation I have ever received. This was also such an affirmation of my worth as a human being, and also that perhaps I did have some talent in writing. Young wayward kids need that. I did.
Every year of my life if I drove past this building I would be reminded of that moment. And now it is gone. They tore it down 2 years ago. A piece of my childhood died.
My visitor for the past couple weeks would surprise and confuse most who do not know me well, or who have a kind of fixed thinking about relationships and how they must be, and how they must end. I have always tried to maintain the good of relationships, even when they become a memory. Love never ends. Bitterness poisons the heart.
When we first learned I had terminal brain cancer, we knew there were quite a few people who should be notified personally, by a phone call. Some would learn through social media, of course, but many people I know do not use social media at all, some do not even own computers. But also there are those whose lives we still touch, despite distance and time. We live in their memories, and shall continue to do so after death. My sister came to me and said: “Do we call David?” There was no hesitation. “Of course we do.” I could not imagine his learning, perhaps years from now, that I had died and he was only just learning about it through some distant anonymous source or random comment.
David Spangler. He is my ex-husband. Although I have always hated the EX. John and I had long talks about this subject with regards to his wife and my husband. It is harder when you have children by your previous spouse. To EX someone whom you have progeny by, seems to me to attempt to EX that parentage in some way and feels wrong —-parent is a permanent relationship, bound in a special bond of love—to try to negate that is an attempt to negate love, which is eternal. So I told John he could call her “ The mother of his children” rather than Ex-wife, if he needed some proper nomenclature for her.
John and I had many conversations about relationships, and our own unique one, which developed because of my own spiritual and religious beliefs co-mingling with his over the course of 17 years and was mostly known only to ourselves. I was surprised that his sons after John’s death used this to spew so much hatred and grief on me that to this day I weep when I think about it. They never understood that some relationships do not fit into a convenient box. John did, and I am eternally grateful for him, and that God would send this man to me, to care for me and love me, and to enjoy his role as my champion in life, my protector and help-mate. We thought of our relationship as similar to that of St. John the Evangelist and Mary, mother of God. God had given me to John to protect and love. He filled this role with honor. He was an honorable man.
So the question was do we tell David, my husband, that I am dying. Denise made the call. Although we had of course, having no children, “lost touch” with each other, I have always kept track or tried to find those people in my life who still hold a place in my heart. Many of you on my friends list here on Facebook are friends because I never forgot you. I have always loved you. So I knew where he was on the planet, and also his having a father who was a priest in the Episcopal Church, well, priests are not hard to find. There are directories. Who’s who books, and knowing David as I do, I knew he would not be far from his parents. I did not wish to speak first, and Denise and David were very close as well. Our divorce, tho contentious at first, that initial ugliness that happens in all divorces, faded away and all that was left was love and deep regret. Part of this whole dying thing I have learned, is dealing with life’s regrets. David was a big regret. Our marriage was good and strong, but I was a very driven woman, in college, getting my degree, and David, who was so much more intelligent than I, a National Merit Scholar, had no ambition. This was our fight. Our only fight. Much later in life I would learn the unimportance and silliness of this argument. How silly it is to define ones-self solely by the career path chosen. By how you make your money. This is so little of who you truly are. David was happy to work for money in any way he could but his life—his being was not tied to it, as mine was, as a Nurse. His LIFE was home, and other interests, reading, and enjoying the variety of life on earth and the world and all that was in it. But I would learn much later this valuable lesson of how much of what you think is you, is not you at all. Much of what you do for a “living” is completely different and apart from what you do for a LIFE.
It was a couple days after Denise made her call that I finally spoke to David. There was a lot of weeping and apologies on my side. He did not need them, nor did he want them, but I gave them anyway. Soon, we were having frequent phone calls filled with memories, and of course he insisted on coming to see me. He was thousands of miles away, and had a few problems to correct to make the journey, but he finally arrived a couple weeks ago, and has taken some of the workload off Denise in my care, and has been a great comfort to me. He never remarried either. I could feel John close to me, knowing that I needed this. Some peace regarding John’s sons finally settled that grief in my soul. Some men do not grow up to be anything like their father, but something completely alien. But there are honorable men, who grow into it of their own volition and sometimes despite overwhelming odds or because of them.
I have enjoyed this visit with an old and very dear friend. A man I loved enough to marry. A man I still love, though granted not in the same way I loved him while I was his wife. We are still great friends. There has been a lot of laughter in my home these past weeks, even though my physical condition has been rapidly deteriorating. There has been much pain, pain that I cannot control and happily old pains healed.
There is love in my house. And that can only do me good.
Usually an early Spring like this one has been would have been a source of great joy to me. I would be out everyday, working and cleaning up the garden, watching things come up and bloom. Clearing paths, watching the wildlife venture out from hiding places, and sitting on the patio in complete awe of God’s creation.
Wonderwood is a perennial garden. Everything comes up from the ground and there is very little that I must plant, unless I have made plans for a few annuals here and there to give me color, and perhaps some spring bulbs. There is actually a bag of spring bulbs hanging in my coat closet now, the last ones that my beloved John bought me before he died. Oriental Lilies. On sale at the end of the season last year that I scarfed up for planting this year.
But this year I am too weak. I cannot lift myself from the ground if I were to sit and work the beds, so I watch as my flowers come up among leaf clutter and weeds. Their beauty is not marred that much by it, but there is a sadness to it for me. I remember when my grandmother became too weak to work her garden, it depressed her terribly. I was still driving then, and my brother Paul and I would drive to Shawnee every week to weed and plant her annuals, and water her beds. Then all she had to do was putter around. It made her happy again, and she told me her neighbor told her that her garden looked the best it had ever been.
Wonderwood was my attempt to bring a feeling of the wild beauty of our family’s traditional gathering spot, Platt National Park in Sulphur, Oklahoma. (Now the Chickasaw National Recreation Area) to my back yard. I had other plans as well, big ones, to make it look even more like Platt, I wanted to build a miniature facsimile of one of the picnic pavilions. John and I discussed it often.
Now I sit and look out the window and make plans for things that I want to be dug up and moved to Mysi’s garden, or my sister’s. Over the years I have made plans for this inevitability. It took me years to separate out specific flowers and shrubs so that upon my death she might go to one bed and pull the whole thing and transplant it to her own home. The one in front has all the deep purple Iris, Tulips, and 12 white Peonies just waiting for her shovel.
Denise came over and dug up 4 trees. I hope they all live, and she will have some nice shade and a reminder of me as she gazes out the window in years to come. So far, so good.
By now I would have had some annuals in pots, the porch would have most of my indoor plants that have been wintered indoors in their usual places, and I would have washed it down numerous times so it would be a pleasant place to sit out. In the back, the patio would have been cleaned up twice, and more pots planted. The ground cover from the patio to the back of the yard would have been whacked down to ready itself for growth. It never got this initial trim so the Back garden is a wild woodland. forest. But interestingly, it does look more and more like I transplanted a small plot of land from Sulphur to my backyard.
And in its own way, at this time, that is somehow perfect.
January 8, 2016 was the day I got the news I was dying. Of course everyone is dying. Most people do just do not accept or acknowledge this fact. We are all on our way to the grave. We just get there at different times and in various ways. But we all arrive at this destination eventually. So far, over the course of human history this is the one indisputable fact: Humanity has a 100% mortality rate.
I have always been pretty realistic about death, especially my own, and even to many seemed somewhat morbid with my obsession about it. I made many decisions about my own death while I was still in my 20’s. Pre-paid for my funeral while I was in my 30’s. Had my will in place before I was 40, Talked openly with the people I wanted to be in charge of things once I was incapacitated regarding my advanced directives and continue to discuss those things as the state of my health deteriorates currently. I believe people who ignore these basic things are foolish. As a nurse I have seen many people die, and it is not pretty when all these things are left undone. My niece Mysi, since she was 4 years old, (She is 37 now) has known that she will be the one to “take care of me” when I am old. I have no children. I was not sure what marital status I would be in, and in truth it is probably better in my opinion if someone other than a spouse is an executor of end of life matters. But this blog is not about all that, in fact I may have already covered all this previously, but the cancer also makes my short term memory boggled and I now have a tendency to repeat myself. Some would say this is just old age–so be it.
But what I really wanted to talk about is the reaction of other people to my cancer. There seems to be a prevalent thought that everyone who has cancer is in some noble battle to beat the cancer and live. If you are not clutching white knuckled to every minute of life you can steal back from it, or following every single avenue of treatment then you are somehow failing at the whole “cancer thing”.
I was not given this kind of choice. They could not operate and remove them. There is no chemo that can find and reach them. They could diminish the swelling and perhaps with full brain radiation reduce a couple of the small ones and give me back some function. Everything from this point on is palliative. From the get-go my diagnosis is FATAL. The median survival is 6 months. 1 year at best. In other words, most people are dead at 6 months. Some people live for a year. This is Stage 4 brain cancer with large tumors in my brain growing rapidly. Because I am a Christian, my initial response was somewhat surprising I suppose to those who have not given their lives over to Jesus Christ and trust that God is ultimately in control of everything in one’s life. I was going home. I was closer to the goal that is the goal of all Christians. To meet my Lord and Savior face to face. There was joy in it. I was also called upon to suffer for the Lord. This too, to most would seem a ludicrous thing to see as a blessing but it is not. Jesus suffered for the Love of me. I can now suffer for love of Him, and to him give all the glory. This was a gift.
So my thoughts turned immediately to “How do I wish to die? How can I give this meaning, not only to me, but to others who are now in the unfortunate position of watching me die? My goal is to die with dignity, in the arms of my beloved family. To not prolong their pain and to not cling to life that would ultimately only prolong my own suffering and that of my family and friends. All decisions I make are based on this goal. But again, many people, for whatever reasons, do not accept this. They continue to ask questions of me based on THEIR goals or expectations of how I should be treating this. I am daily given some new advice on how I can cure myself. How I can grab a little more time on earth.
This is NOT my goal. That fight is not mine. I want only peace and strength for the fight I am in, which is to die with dignity and peace and to go to heaven. Adding more time is the equivalent of extending my time of suffering, and it is ludicrous to me to spend the short time I have fighting for extra days of suffering. Spending precious days hunting down ways to extend my time has nothing to do with where I am or wish to be. My most fervent prayer is for it to be soon and let me not linger long. Let my love for God shine through to others in the end, and let my family be at peace when I am gone. Knowing what the battle truly is helps. I am not “giving up”, I just know the battle I am in, and accept it. And…I have my ticket to another and better place. I hope to see you there someday.
Three times in the past few months I have been confronted full force with the selfish ugliness of human beings. These were not merely passing insults or minor annoyances, but faith shaking, mind-boggling betrayals of trust and love. Every day my first prayers have been to have forgiveness in my heart and to remove any resentment I feel. But I weep. I weep bitterly over them. My mind goes over and over them in some vain attempt to understand them, but I can make no sense of them, and the pain returns every day.
I hate ruminating over past hurts. It is a waste of time, and I know it. Maybe these hurts are still too close and fresh and unhealed. I had resolved never to speak of it in the open, never to write about it, because it may come off as vindictive and petty and I should just get over it, and I know in time I will, but I also know that these 3 events were life changing—relationship changing events that tore out pieces of me and left large wounds. How much can I say honestly without wounding many others? My standard way of dealing with things like this that confuse me is to write it down, analyze it, find my own fault or blame in it, and vow to change what I can in myself, which is all I can do really to remedy the situation. But the resentment and anger remain and haunts me.
Anger. It has always been my greatest sin.
I am generally a very direct person. Some say I am blunt. I am not passive aggressive. You know if I am angry at you. You never need ask. I take responsibility for my actions and admit my wrongs. But I find myself writing this in a passive voice, skirting around things, protecting those who, in truth, I do not believe have really earned any protection from me. In fact they deserve to be exposed for the evil they are. Evil. Strong word. But after some time of analyzing their actions I can see it no other word that truly describes their actions. Thoughtless. Cruel. Selfish. Are these not evil?
What would it change if they were all exposed? How much of my own analysis of the situations are tainted by my own overwhelming sense of hurt and betrayal? How do I let go of the resentment?
I pray everyday. Lord Jesus, take this anger from me and replace it with your Peace. Let me be an instrument of your peace. Remove all hatred from me. Holy Spirit, fill me. Use me as a blessing. Guide my words and my thoughts. Eternal Father, let me be an example of your love. Soften the hearts of those who have injured me, and allow them to see their own errors. Give me a forgiving heart. Free me of all anger.
I often say I am Nanny McPhee who has not yet finished her “lessons” to her charges. This is generally said because I also am blessed with a “fang” in front. (of my own making, when I was a child, my front baby tooth fell out, (as they always do,) only out of curiosity I explored the subsequent hole with a toothpick, and it broke off, and the piece stayed there til the new tooth came in around it, pushing the piece of toothpick out and causing the tooth to move forward and for some unknown reason, grow continually, albeit slowly. I have had to have the tooth filed on occasion over the years, but have not done it in some time so I kind of look like a combination of Nanny McPhee and Ollie of Kukla, Fran and Ollie fame.
Not sure why I decided to go off on this particular physical flaw of mine at the beginning of this post, I guess because it has always been an embarrassment to me, I have never known what I might have looked like with straight teeth, and it is the one thing that pops out (pun intended) at anyone meeting me for the first time. I watch as people watch me talk and I see their eyes go continually to this mouth of fang, and wonder how much of what I say they are hearing or are they just mesmerized by my snaggletooth.
So yea, back to the Nanny McPhee analogy. Over the years, online I have met many young people. I play online games and of course it is very hard not to meet them if you are a gamer. I have also had numerous encounters with young people in the real world, as well. Because of my own troubled youth, I have always felt “called” to help young people through some of their more difficult times in life, in some way if I can. I have even felt that God leads to me kids (or kids are led to me) that need special guidance or encouragement. Most of these kids have been boys, but I have had a few girls too. I have, however, always called them “My Boys”. Most of them even over a course of 20+ years have kept in touch with me and though they are grown now do still come back for advice, or encouragement, or commiseration from time to time.
During this time, as they have in their time discovered I am dying, they have sent me so many kind notes and letters telling me how I changed their lives, how much I taught them, and what I meant to them during those difficult days, I have been blessed to know that I made a difference. This is such a special gift to me. I could of course hope that some word or help that I offered was of some use, but to hear from them has so touched my heart over the past couple months, and I am so very thankful.
I don’t even care that I did not get rid of my fang.
I have always had the ability to stand outside myself and watch myself objectively. When I was a child it was a sort of coping mechanism. Daydreaming, removing myself from either unpleasant or boring situations by being outside of it. Throughout this process of cancer and dying I have done this, and done clinical assessments of what is going on inside me. I also live in this body, so I have the unique ability to feel everything that is going on, all the myriad of minutiae of symptoms and changes, I feel or see immediately and acutely. I am curious of the causes. And as a clinician I run down the list each time. Medication induced? Tumor? Tiredness? Stress? Just old age? Paranoia?
I do see myself deteriorating. Small symptoms show up and become a part of my daily life, and I adjust. Cancer is a disease of continual adjustments. Life changes daily. I remember when I first got arthritis it was like that with my hands. I had to learn new ways of doing things. Sometimes I would hurt myself trying to do things the old way, and my hands just would not move that way anymore. I laughed about it, because I forgot for a moment my hands were all gnarled with joints slowly freezing in place. I do that now when I forget I can’t see on the left side, and plow right into something, or I forget my left thigh muscle has wasted down to a sliver of what it once was, and I try to stand alone on it, and begin to go over like a felled tree.
Of course most of what is happening has to do with the Brain Tumors, and there are 4 of them, so it is a fascinating and complex puzzle to me to figure out which one is causing what. I have what I have chosen to call “spot headaches” –short duration pain in my head in one spot or another. Nothing like the initial headaches which were my whole skull and so devastating they sent me to my knees in pain. Kind of a reminder from the tumors they are still up there, and they are still growing. The one giving me fits lately is close to my left ear. The other is just at the top of my head on the right. The largest one, the one on the cerebellum of course, is always making itself known, since it is on the “little brain” that controls so much of what we do.
When you think of the tumor on my cerebellum, and the subsequent swelling, you can see why it took my reading and writing on the onset, and why with the swelling diminished, I got it back. I do see it slowly being taken again. I am slower with my words, and I am not sure how long it will be before I will not be able to write again. Walking is a daily adjustment. I am never sure if I will be steady on my feet or completely wonkified. No wonder it takes so long to learn to walk. So many areas of the brain control some portion of it.
For those who are truly outside of me, my family and friends, I am sure it appears that I am doing fine, for the most part, and on most days I feel I am. I try to push through the exhaustion, although this current round is pretty darn intense and is winning the battle. I develop various work-arounds to persistent changes and symptoms to live and do as much as I can. Some are more successful than others. I do tell my sister Denise everything. I don’t want her blindsided by something sudden that we had warning signs about earlier.
Other ways I feel I am on the outside looking in, is with other people’s reactions to my Cancer, and my imminent death. Some people are in total denial. Nothing I relay about symptoms or how I am feeling has anything to do with the fact that I am dying, but in some strange way is just normal aging. Some are full of pity, some compassion. Some are obviously uncomfortable with all of it and avoid the subject entirely. I think death is harder on other people than on the one doing the dying. I think it is a constant reminder of their own mortality. I find it interesting that we all know that death is certain. We all die. But we are all in a kind of denial about it til it is smack in front of our faces.
I am still at peace with my own death, and blessed in some way everyday by it. Some goals have changed, and these I leave in God’s hands, He has His plan and timing. And that is perfect.
I have always been very independent. In fact probably fiercely independent. Asking for help is just something I do not do well. Thank God I have sisters who have stepped up to care about things and do things for me without my asking, or I would be facing my worst fear—living in squalor. Of course they would never let this happen, but I have always feared it. Being a “neat” hoarder, (I do purge every so often.) I am still a collector of junk, it is just neat junk (so far). But it is still hard for me to watch them run around and do things for me that I can no longer do. In recent days it has become harder to “push through” the fatigue and just do things anyway, those who have been in the military know this push. So do marathon runners. You must make it up that hill, your body is saying no way but you push anyway, and get there. The fatigue is too profound now when it comes. I cannot push through it. I must give in to it, and rest. It annoys the stubborn redhead in me.
Not knowing what my tumors look like now bugs me. I know they cannot do a scan now, because the radiation on my brain only finished 2 weeks ago, but when I have some odd sensation or symptom, I wonder if the beasts are on the prowl and taking over new areas of my brain. This next visit to the Oncology Doctor we are going to stop by medical records and get a copy of my chart and my first scans so I can have them for comparison when they finally do the next one, and so I might share them here so yall can see them. Fear of the unknown. This is the greatest fear for most human beings.
Although the steroids help the swelling in my head, and at first they were like tiny miracle pills because they kept the headaches at bay, now the side effects of them make me hate them. The swelling of my face and neck, the weakness in my upper legs, and the odd effects on my mood and appetite make me look down at the little pill with contempt. I am on 4 mg 3 times a day which is not much, and from what I have read, when things really get rocking and rolling that could be greatly increased just to keep me semi-functional. They are a necessary evil. As many great things that they do, the side effects are brutal at times.
I have had to begin to take pain pills. I do not like to take mind altering anything. Pain pills make me feel wonky in the head. I do not enjoy this feeling. I spent a lot of my life on mind altering drugs and gave it up and like my brain free of weird. But the headaches are creeping back, not near what they were when the brain cancer was unchecked, but they are there. Mostly spotty and dull, and my fear of the pain I did have when this whole thing started forces me to take action against them before they get out of hand. I also have more pain in my legs, most especially the left one and if I do not take a pain pill I do not walk as well because of the pain and my desire to be mobile overrides my hatred of the pain pills.
When I am alone I think too much. But I love to be alone. I have always treasured my solitude. People tucker me out. Even more so now. There is a good quote in CS Lewis’ book “A Grief Observed”:
“I find it hard to take in what anyone says. Or perhaps hard to take it in. It is so uninteresting. Yet I want others around me. I dread the moments when the house is empty. If only they would talk to each other and not to me.”
I enjoy people around, I just want them in the other room. Kind of like when our family would gather at my grandmother’s at holidays. I would find a spot in a quiet corner and just watch all the interactions of my relatives. I could pick and choose when I wanted to get up and participate in a conversation. I prefer to be the girl sitting behind the potted palm at most functions.
It is not hard for me to accept my death and I do wonder when it will come and how. I know I still have things I wish to get done, and I pray and try to trust in the Lord that they will get done. Sometimes this is very hard on the days when I am feeling weakest and death seems so close.
I fear losing functions again. Most especially my mind. I can deal with the weakness in my walking and my unsteady gait, I can deal with being clumsy and waddling when I walk, I can deal with the pain in my head and elsewhere, But I still have things I wish to write, and when I have a short term lapse of any kind in my ability to think and write and understand, it makes me panic a bit. I am less able to tolerate and think clearly when I have too much input, so I keep the house quiet when I can.
My prayers are for strength to get through each day. Every day I feel a bit weaker. Subtle, creeping weakness. My only strength comes from God.
“Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:28-31