90. I Bet You Hate Minutiae Too
Every person I hold near and dear are living with a terminal illness. The good news for them is they will survive — there’s not a whole lot of good news for me. I will die from metastatic breast cancer. Surprisingly, I do not think my loss is greater than theirs. I did in the beginning, but time has made me see things a bit differently. I don’t want to die, of course, but I am dying. My pain and suffering will end with my passing. In many ways, that makes me the lucky one (?) — of course not, but it puts things into perspective, something I am in need of right now.
I’m going to push into an unpleasant phase I recently entered, and try to explain a few things, but getting from here to there is going to take some time and a circuitous route — as usual. I know.
Before I get to that, I want to say that the response to the letter writing challenge has been wonderful. I can’t thank you enough. It has been such a thrill to kick back at the end of a long day and open an envelope or two and find out who you are and what you thought you’d like to share. And I love that some are short and some are long, some come on pretty stationery and others come on notebook pages, and some tell a story and others are creative literature. I still plan on including them with each new blog, but I may also do an entire blog of them — perhaps a theme blog. Grandkids are most always mentioned so that could easily work. I really hope others will join in on the fun. If paper writing isn’t your thing, go ahead and send something via email. That’s how I’d have to do it since my handwriting is a bit touch and go lately. So again, thank you for sending your thoughts, they have been inspiring, uplifting, and just plain old fun. And to those who sent them without a return address, I want to give a shoutout at how much fun that was!
Now back to business.
To those who love me, my dying experience is as much yours as it is mine, though each of us is playing very different roles in this tragedy. For reasons unknown, I was cast in the leading role of a one woman show with a limited run. I was tossed onto center stage while everyone else took seats in the theater. Surprisingly, the front row center seat was reserved for a complete stranger — my hospice nurse.
Spoiler alert!
She is the only person who will see this tragedy in its entirety.
Nurse M is front row center because she is the person to whom I tell everything. The She Devil is most definitely sitting to the right of her and Tim to the left because together they know it all. The other front row occupants have been told varying degrees about this shit fest, but not all of it. Why? Because the physical, mental, and emotional load can’t be shared, not really, not entirely — that’s why I started the blog. It is arduous talking about things over and over; and quite frankly I’m tired of my own voice. Well hello, Mr. Seger, please Roll Me Away.
Anyway, my nurse-partner gets all the skivvy because I need someone who can handle my physical, mental, and emotional load. I sure the hell can’t do this crap by myself. Especially now that physical things are getting away from me and especially now that I feel the need to pull away from people. You might remember, way back in Blog 28, Hospice: What It Is. What It Isn’t. I wrote:
The hospice social worker handed Tim a thick, shiny, pocket folder holding pamphlets and scary-named forms on her way out the door after our first meeting. That was December 10th and I have yet to open the folder. Tim, on the other hand, opened it and read a pamphlet before The Women of Hospice were off the driveway. Within minutes of his speed-reading event, he wanted to explain the stages of death and dying — not because he had some perverse need for a bit of show and tell — but rather because I’d previously posed a casual wonderment if there were hospice stages like there were grief stages.
“We should discuss the stuff I read,” Tim said while waving the pocket folder in my direction.
“I’m good, thanks.”
“It might help if you knew about the stages. It really puts things in perspective and—”
I cut him off. “Tim, if I want to know about the stages of death and dying I’ll read the damned pamphlet OR better yet, I’ll experience them firsthand … Is there a reason why you’re pushing into this?”
“The pamphlet really put things in perspective for me … It said you are doing work, the hardest work you’ll ever do — and you’ll be doing it up here,” he pointed to his head, “and that you’ll be doing it alone.”
“Not so far.”
“And the pamphlet explained that even if you shared your thoughts, none of us could really understand what you’re going through.”
“So the point of this discussion is what exactly?”
He groaned. He continued to push in. “The pamphlet said the people in your life have to accept that your world has changed — and that you’re not thinking about the long-term — and you may not be interested in the same old, same old, and—”
I pushed deep the tears I needed to shed, “I’m not interested in this back and forth. Can we be done, now?”
He lowered and shook his head a bit, “I’m trying to help — the pamphlet said that’s my job, to help.”
“Can you please stop helping?”
“Okay, but we’ll need to discuss the DNR forms before our next hospice appointment.”
“Sounds fun.” I watched my poor mate walk away all slump-shouldered. I felt awful. I didn’t want to push him away, but I just couldn’t have the conversation, or even listen to the things he learned. I knew Mr. Wonderful’s need to prepare me was his way of taking care of me — by teaching me. That’s what the whole interchange was all about.
I just wasn’t ready for the enormity of all that. Six or so months have passed since then and I still haven’t read the pamphlets. If I had, I would have been prepared for the ‘stage’ I am going through. Being prepared is good, but I’m glad I didn’t read the pamphlets. Knowing this or that might have influenced my blog writing. And now that I’m going through this uncomfortable part of hospice, I’m glad my family members read the pamphlets at Tim’s insistence. It’s helped them understand some of the bitchiness I experience from time to time.
So, what’s going on with me now?
It’s always something, isn’t it?
I’m sort of at an antisocial stage. On way too many occasions lately, I’ve found myself fantasizing about getting into an Uber and sneaking off to a hotel room — all by myself. A huge part of wanting to flee into the night is this: I get absolutely NO privacy, NO alone time. Remember, I need supervision 24/7. BTW, babysitter sign-ups are handled by Mr. Wonderful, so …
Anyway, my recliner, the seat that’s been attached to my ass for the past 246 days, is in the living room at 183. It may as well be in Grand Central Station. To get into my home or anywhere throughout it, you need to pass through my living room. That means no matter what I am doing — blogging, reading, sleeping, talking on the phone, watching a Hallmark movie, eating, body-spritzing, entertaining, weeping, or praying, it is being done in front of whomever may materialize.
For the most part, I don’t mind the traffic. After all, the people who buzz in and out are the people I love most in the world, my husband and children, my mother and sister, and a few close friends; and when one of them visits she brings me a Congdon’s donut. Hi Joyce! Oh, and that reminds me of the lemon and orange fruit slices Debbie brought me from Old Orchard. I said yes please when she offered to get some. I think she brought a pound of each — no complaints here!
Back to business. I want to state for the record that Hadley’s ins and outs are not part of this little snit because I just can’t get enough of that child. Having said that, there are times when I wish I could be alone, and that doesn’t mean during the dead of night when I’m always alone. I said at the beginning of this blogging thing that I was going to be truthful, so here it is: I am sick and tired of people encroaching on My Space. I have felt this way for a long time, but it hasn’t mattered all that much. Why the change, you might be wondering? Well, apparently there is a phase of hospice when an individual pulls into themselves. When they just stop caring about stuff, about the minutiae of life, about the things ‘cups of tea’ conversations are made of.
It’s really important that everyone reading this understands this point: I care about you. I care about your lives, and your plans, and your hopes, and your dreams. I care about your vacations, and your children, and your grandchildren, and your upcoming weddings, and baby showers, and the new addition to your homes and I WANT to hear all about each and every one of those things. Please do not stop telling me. It would feel like a punishment. Whenever I have negative thoughts, I feel like I am smiting my good fortune if I speak about them. Like when I say I want to be alone, I hunker and wait for a lightning bolt. I know I should be wanting every minute that I have left filled with people, people, people.
But I don’t.
It’s really important that everyone reading this understands this point: I no longer care about trivial — the normal day to day, run of the mill stuff that no longer affects me. The stuff that I can no longer weigh in on. Honestly, the chit-chatty crap is driving me insane. I don’t want to hear about grocery lists, funeral outfits, sidewalk upgrades, tree removals, discontinued shampoo scents, DMV snafus, stores with expired foods, stores with empty aisles, too much rain, not enough rain. My list could go on and on, but I’d just be adding to the things I find irritating.
I find myself irritating.
I’m sure every person in hospice listens to the hows and wherefores of the program hoping there’ll be something that will help them. Something that will make their looming death not so bad, or somehow make it better or easier than they thought it would be. I think the first step toward finding a positive journey that one day leads to an okay ending is for the hospice patient to decide how the program works best for them. There are many offerings in the program, all intended to help us live happier lives. How we do that is up to us. I suspect a large group of patients would agree that we are bound by two things: we are dying; and there is a lot of time for thinking.
I would like to state for the record that every word of every conversation, let me repeat that for emphasis, every word of every conversation I’ve had since October 18th plays over and over in my head. With each loop there’s a newer awareness of how bad things are and how much worse they’re going to get. I imagine it is very similar to what a lead actress goes through while rehearsing for opening night for the show of a lifetime. So let’s pretend for a few minutes that I am the actress in a Broadway play.
I have a script which I mostly follow, but there are scenes where improvisation comes into play. Not surprising given my life is one digression after another, but let’s face this fact, nothing in life ever goes ‘as planned’ so it’s best to prepare for life’s little curveballs. Okay, the lights in the theater dim calling everyone to their seats. The orchestra plucks a few strings, the curtain rises and the show begins. Everyone’s eyes are glued to me, the lone actress on the stage — the one telling the story. Keep in mind, the only person who will hear every word of this tragedy, from the opening monologue to the climactic ending is the hospice nurse.
Why is that?
It’s time for a history lesson. Dame Cicely Strode Saunders (b: 1918 - d: 2005) was an English nurse, social worker, physician and writer. She is noted for her work in terminal care research, but more so, she is remembered for her leading role in the birth of the hospice movement. Dr. Strode Saunders’ research and bedside work put her in direct contact with patients who were in the last stages of dying. She spent countless hours caring for, listening to, and responding to patients’ concerns, things that all patients are in need of; medical care and attention. She also spent an abundance of time listening to and responding to the concerns and needs of each individual patient; things that made them who they were; things that lifted their spirits and filled their souls; things the medical community couldn’t or wouldn’t provide them — when they so easily could have.
Cicely Strode Saunders believed there was nothing more important than meeting end of life requests.
In 1952, Strode Saunders began working in London. She spent seven years researching pain control. This would become the fundamental goal of a hospice team — the patient and their nurse. In 1960, she set up her own hospice, serving cancer patients. Her work with dying men and women showed her that, “as the body becomes weaker, so the spirit becomes stronger.” In 1967, St. Christopher’s Hospice, the world’s first purpose-built hospice, was opened. It was founded on the principles of pain and symptom relief with holistic care to meet the physical, social, psychological and spiritual needs of hospice patients and their family and friends. Dr. Strode Saunders’ philosophy — the hospice philosophy is that, “a person matters until the last moment of their life.” Under the leadership of Strode Saunders, St. Christopher’s was managed as a ‘home away from home’ where the physical environment of a dying person was paramount. It was a place where patients could garden, write, talk, and get their hair done. The champion of dying patients emphasized to all that in every person’s life, “there’s so much more to be done.”
I believe I am living proof of this philosophy. Since my diagnosis, I started a blog, wrote Be and Be, still, have seen the publication of The Gutter, and did two interviews. All of this was really fun and challenging work. AND, I have finished Muah! The Sound of a Kiss Goodbye, Book One. From cover to cover, I have poured every bit of my creative energy into this book. It is a compilation of my blogs, but it is so much more. Scattered throughout the pages are quotes of mine and others, as well as personal letters from people you have been introduced to: Tim; (Hannah and Jessica grace Book Two); and Don, and Mom; (Marchrie graces Book Two); and the She Devil; and Joyce McTigue; and Donna, Debbie, and Jennifer; and The Warden, The Goddess, and The Guru — all people who have helped make my dying an ‘experience’ for me, a positive journey of friendship and love rather than a journey of hopelessness and fear. The time given me has made it so there needs to be Book Two which I am two-thirds of the way through. And, the team of O’Brien and Pendleton will most likely have The Caller out by summer’s end. AND I am working on a surprise publication. Nancy, this one will blow your mind! Just sayin. And Guru, you and I need to begin work on another cover!
Now, if I can do all that,
I can do anything.
So here’s the plan. I’m going to dig deep and find some reserve of whatever it is that I need to push through this crappy stage. I’m pretty sure I’m at this stage because I know I’m slipping here and there and everywhere. As I face each new change and each new challenge, the world as I used to know it slips further away. I haven’t really been part of your world for eight months, but I could pretend I was when I was feeling good. I no longer feel good enough to pretend there’s lots of time.
At the end of the day, it doesn’t matter if eggs made it onto a grocery list, or if Tim wears the navy or gray tie when I’m dead, or if the DMV is or isn’t open on Thursday evenings. What does matter is that I have this time and I sure as hell need to find a way to appreciate every minute, even the insidious, infuriating, and irritating ones.
By the way, I hope Tim wears the gray tie.
It makes his eyes twinkle.
And now, Letter #3, it came via email and it read:
Dear Sheryll:
While reading your books “Be” and “Be, Still” two things happened. In “Be” I recognized several lessons I can apply to my own curmudgeon-y self, in particular, the advice you give entitled “Be Helpful.” I know that I am helpful to family and friends, but recently I’ve been grumbling about obligations. The irony of it is this: I’ve volunteered to help in many of these situations. So why am I cranky?
You write about helping with the lifting. Perhaps the baby-sitting has been under my skin because as a single mom I had no help. Am I resenting being able to help? Your words made me look at my great good luck - I have four wonderful grandkids. In the blink of an eye they will be uninterested in spending time with their grandmother. Now when they see me, they are pure bundles of love. I’m letting my perception of inconvenience rob me of this brief window. You have caused me to pause and consider, and for that I’m grateful.
The second thing that struck me came from reading “Be, Still”, your sweet tutorial for those who face the same “deadline” you’ve been given. How generous of you to hold the hand of others, helping them in ways that only a person living with terminal illness can understand. But your book is not only for the dying - reading it helps caregivers know when and how to care, what to respect and appreciate, when to be present and when to back off a bit. So much of it gives loved ones a glimpse into what their beloved is feeling and may not be able to articulate.
Sheryll, you can leave this world knowing that you have done much more for your readers than entertain them with mysteries. Your blog and your books will be your literary legacy, and I’m left sorry that we weren’t in touch well before your illness, so that we could’ve bonded sooner over writing. That said, I’m so thankful for the precious time you’ve given to me.
We are morning writers, you and I, fueled by the quiet that’s required to create. Every morning when the sun rises and I plunk down in front of the keyboard, I will think of you.
With love and awe - Janice