Largeness

The Book

I highly recommend The Book of Longings by Sue Monk Kidd. It is a fictitious novel set in biblical times about Ana, the wife of Jesus. She is the main character; Jesus is secondary. It does contain historical content, but it isn’t preachy. It focuses on Ana and women’s power, or lack thereof, during this time. I chose it for book club and our discussion was layered and went much longer than our usual time.

Largeness is one of the book’s themes. The reader sees this in the opening pages when Ana reads a prayer she wrote inside her incantation bowl:

 “Bless the largeness inside me, no matter how I fear it. . . . When I am dust, sing these words over my bones: she was a voice.”

Ana was privileged to be a woman who was educated and knew how to read and write. When her marriage was arranged to an older man whom she didn’t love, she was told all her scrolls would be destroyed and she wouldn’t be allowed to write once married. She hid most of her scrolls, leaving lesser ones to be destroyed. I loved her daring spirit. Ana spoke back to men and even argued with them. Against all laws and expectations, Ana took papyrus from someone who betrayed Herod Antipas (also an enemy of hers) and she declared it a parting gift bestowed on her for her departure. The others called it stealing. She caused trouble often. Her intelligence and the fact that she was always underestimated saved her often.

Many attempts were made to silence Ana because she was a woman in a time where women had no power. She lived with great passion during a time, place, and culture where females were silenced. Jesus recognized that Ana was an equal. He didn’t try to silence her.

Way to go, Jesus.

Ana and Jesus separated about halfway through the book while still being married and devoted to the other. Jesus planned to focus on his calling and ministry. Ana needed to flee to Egypt because her actions made it unsafe for her to stay in Galilee. When they were alone together on the morning Ana departed, Jesus looked deep inside her and said, “I bless the largeness in you, Ana.”

She responded, “And I bless yours.” 

This is a simple but remarkable exchange between the two characters. If you’re reading in a hurry, you’re likely to miss it. Where it seems natural for Jesus to recognize the largeness in Ana and know that she has to go boldly to Egypt, Ana’s reply is stunning. Her largeness, her voice, to offer a blessing back to Jesus as an equal, speaks to her confidence and how she sees herself in the world.

Ana’s largeness takes hold in powerful ways in Egypt where her intelligence, abilities, and courage emerge even more. Her largeness and voice shine the most in this part. I fear I have already given away too much, so I will stop and urge you to read the book on your own.

My Own Largeness

The Book of Longings returns to the idea of the largeness within people. Questions in one of the reading guides include: How do you conceive of your own largeness? What inhibits it? Do you agree with Yaltha (another strong woman character) that passion to bring forth largeness is more important than the largeness itself?

First of all, yes, I agree that a person needs passion in today’s world to bring forth their largeness. Finding one’s authentic voice and using it is how I define largeness. Being heard and being a voice challenge each of us. Whether we teach, write, create, solve, research, parent, or something else, there are a lot of voices out there. As a teacher, presenting reading objectives involved daily passion and larger than life moments where backing up ideas about characters with evidence was the most important thing at that moment in time. When I switched hats to writing teacher, including details, actions, and dialogue became the large idea I made ten times bigger to be effective. Number sense and understanding the beautifully logical world of math was a passion with math. Passion and largeness overlap together.

Thinking about my largeness as a teacher holds some contradictions. There was some stifling by school policy and things like class size, standards, curriculum, assessing children, and evaluation of teachers. There were only so many minutes in a day but the expectation that everything got done was constant. I also look back and see my classroom as a home of learning and fun. I had thousands of books. Read aloud was my favorite time of day where we could just relax. Each child brought something special and made our collective whole magical. There was an intangible largeness that I brought there every day. Beliefs about learning and learners, the relationships with children, and what I transformed the classroom into each day are large ideas in action. Small accomplishments became large. Work, perseverance, revising, continuing to use your voice, teaching and learning with purpose, knowing your why, and having fun all contribute to the largeness I remember teaching.

Those teaching days are gone. Where does largeness live for me now? Over the last few years I’ve really come to not care what others think and I might as well do what I want and what I feel needs doing. I don’t have to explain as much to others. There were rules and expectations that I was to observe as an educator and in my family. I’m far from revolutionary or extreme, but I am much more of a badass now that there is freedom from regulations I don’t have to follow. I can ask a school board member what exactly he means by “restoring order” in the classroom because his perception of order may be different from one that has a little disorder but lots of learning happening. I can be as blunt as I need to be when at an office visit or treatment because what’s happening affects my body. Largeness now leaves less rules for me follow.

Rules can prevent largeness.

Cancer Connection

Where is my largeness in the cancer world? In my own way, I use my voice to make a difference for others, to bring awareness, and a bit of light to the world. It’s small, but I still reach people. I blog, I have fundraised, and I’m a patient advocate where I receive cancer treatment. I use social media to continue to grow my largeness. I feel larger with the friends I have made in that world. We share our largeness and our voices for a common cause.

How has cancer tried to silence me? Even though I have largeness, I often still feel invisible with metastatic breast cancer. The multiple ads on TV show thrivers who look amazingly healthy. I’m paler than usual and have lost my glow. I look and feel old. I know MBC isn’t always visible on the outside. But I also know there are a lot of ways we are hidden from the public eye. I’m starting to mull over an idea for October largeness where those with MBC post brave photos where we clearly are not at our finest as part of a reality campaign to raise money for research for metastatic breast cancer. Stage IV always needs more. It may not be pretty, but it would be loud and LARGE.

Maybe I should get a billboard. That sure would be loud and large.

For myself, as I read thoughts from those living with cancer, there often is a common thread from some that they better get out and do something worthy (large) while they have the chance. I have stepped boldly into new roles with my writing efforts, sharing my photography, and through fundraising and patient advocacy. I’m always working to improve my fitness. I’ll continue those and whatever else presents itself along the way. Like Ana, we all want to have been a voice and be heard long after we’re gone. For me, I think my words, my writing, have the best likelihood of my voice being heard and staying large.

In yoga, the thriver pose makes yourself large. How fitting. Your arms are stretched out to the side and lifted above your head to the sky. You literally make yourself as large as you can and feel your power while you breathe. It is good to take up more space.

I will take up as much space as I can. I will use my voice.

The “I” in Patient

We all know there is no I in TEAM.

But there is an I in PATIENT.

I am an integral part of my care team.

I am the reason for my team.

I am the team member who is affected by decisions.

I care the most about those decisions.

I understand my health well.

I know how I feel.

I track my side effects.

I notice minute changes in my body and how I feel.

I take charge of my health.

I don’t accept no easily.

I believe in science and in myself.

I should not be discounted.

I won’t stay in my lane.

I participate in my care (which is my lane by the way).

I advocate for my needs.

I ask questions.

I don’t just have cancer.

I have feelings.

I use my voice.

I get tired from having to push so darn hard to be seen and heard. My biggest annoyance lately has been feeling like my voice doesn’t matter because I am the patient. There have been a couple of recent instances where I’ve literally had to say something along the lines that I could be consulted and believed. I had helpful and needed information. It’s hard for me not to let anger filter through some responses. Information I bring to a conversation isn’t validated until it can be cross-checked with my oncologist or my record. Some information isn’t entirely correct in my record. It needed to be written a certain way as it was the lesser of two evils. I understand facts are not up to interpretation, but not all of them are black and white. Facts have circumstances. Specifically, facts can change in terms of what I was given in initial scans versus what I need currently.

It took me about 5 phone calls over 3 days to get my last set of scans scheduled. I’ll try to be concise. I had heard nothing after a week. I found that unacceptable and began going through the proper channels so I could get them on the calendar. A recent conference call with a scheduIer in imaging and scheduler from my oncologist’s office upset me. I began to lose it after about twenty minutes of the run around and some misinformation in the initial orders (a case of botched facts). I’ve paraphrased two especially bothersome exchanges.

Imaging Scheduler: It says here you need a premed.

Me: No, I usually don’t take anything.

Imaging Scheduler: If the oncologist believes you need medication for the scan, they will order it.

Me: I don’t need anything because I don’t get the additional contrast dye. You might want to ask me as I’m the patient being kicked around. I know what I need. I won’t consent to take something that I don’t need.

The conversation kept deteriorating. I was close to tears and knew I was getting stuck with the short end of the stick. We all knew I needed accommodations and yet I felt I was being blamed because slots were full. I had been trying for days to make progress with getting these tests scheduled.

Oncology Scheduler: We can proceed with your next treatment only if you can get your scans before your oncology and treatment visit. Otherwise your treatment will need to be pushed to the next week.

Me: Well, that’s a real shitty deal for me, pardon my language. My treatment is a pretty big deal. I need it on time. I’m being treated like I’m not even human. Now, I can come in on two separate days so I can fit these requirements because several people have dropped the ball in getting the scans to happen.

My frustrations were understood.

Right.

We scheduled scans at inconvenient times on two separate days because I had little choice and needed to set definite dates and times. I would do what I had to do. Always do. Always will. The imaging scheduler was going to keep working and see if she could get them on the same date. I wasn’t going to hold my breath. I would place a call to the patient relations department and let them know that known scans needed to be scheduled as soon as possible after an oncology visit so the patient isn’t left burdened for no valid reason. They could do better. I also wanted to suggest beginning the scheduling process sooner for myself if I needed accommodations. You can bet I’ll be bringing this up sooner than is needed so the process is easier for me next time.

My phone rang the next morning. It was the imaging scheduler who had found a way to get my appointments to work with the accommodations I needed, at my preferred location, and on a date that didn’t interfere with my treatment. I scarcely believed it! I felt much better about the fit I pitched a day earlier. I thanked her repeatedly and let her know how much it meant to me to have her work so diligently on my behalf. She made my day and I told her I hoped she would treat herself to something enjoyable, whatever that might be.

Sometimes I feel very Jekyll and Hyde. I am really quite delightful when my buttons aren’t being pushed. I would rather work toward solutions amenably. Life is smoother for everyone that way. However, I can unleash my fury quickly when I’ve had enough. I had had enough. I feel like I’m like my own attack dog when this happens. I am all I have.

Then there are the times I feel like I’m not an agreeable patient. I wouldn’t describe myself as noncompliant, maybe some medical professionals would. Too bad. I ask questions and advocate for what I need. Cancer has taught me a lot.

I am a patient.

Listen to me.

Include me.

Value me.