Writing and Health

Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.

Writing is a way to self-reflect, express my beliefs, and share my voice with others. Tara Parker-Pope wrote an article in The New York Times titled Writing Your Way to Happiness. One path to happiness is through writing a personal story.

The goal is to create an “optimistic cycle that reinforces itself.” She explains that although our inner voice is choosing the words as we write, we can go back and edit our story. For example, I may choose to write a story about a session with my trainer, or planting morning glory seeds, or being kept awake by a thunderstorm. Rewriting it can bring about behavioral changes, improve happiness, and lead to better health.

Bringing about behavioral changes, improving happiness, and working toward better health are all important to me as someone trying to live well with cancer. I’ve written quite a bit about the progress I’ve made with my trainer. Through the rewriting process, I discovered how negative self-talk hinders me in my training sessions and then I made some changes. Maybe I’ll write a story about morning glories and understand why they make me so happy. Writing about sleepless nights during bad weather may motivate me to sleep in my basement where I can’t hear anything which in turn makes me feel a lot better the next day.

Stories lead us to better understand ourselves.

For anyone interested in journaling specifically about health, consider the following prompts:

  • What changes do I want to make in my behavior? Why do I want these changes? What is it I am hoping to gain? What is my plan? How can I take the first step?
  • What things make me happy from the inside out?
  • What small goals do I have that can lead to better health?

Or write a story about morning glories or something you think is entirely irrelevant to your health. After it’s written, you can look for possible connections that you didn’t see at first.

Timothy Wilson has researched writing as a way to change core narratives successfully and calls the process “story-editing.” His background is in social psychology and focuses on self-knowledge and behavior. I recommend one of his books, Redirect: Changing the Stories We Live By, for further reading if interested. He sees writing as a pathway to bring about change. A writer writes for about twenty minutes a night for three to four nights, and each night goes back to edit the narrative. The outcome is that a more honest narrative is written through reflection on consecutive nights.

It’s an enlightening process.

Try it out: Think of a recent situation where you felt some anger.

Anger is a wonderful feeling to use for this exercise because you have automatic conflict.

On the first night, just write a very brief account to get the bare bones of the event written. It’s nothing fancy. Focus on your feelings another night and how to convey those through descriptions or specific actions. Add dialogue another night. Or just see where the writing takes you each night. You really don’t need a plan if you don’t want one. Just write.

Sometimes I wind up with an entirely different piece of writing than when I started.

I see writing your way to happiness as much more of a “revisioning” of a core narrative than editing, especially where endings are concerned. Revising involves bigger changes. Some parts stay, some go. Ideas are expanded. You try things out and see if they work. In Wilson’s book, one of his exercises is called “The Best Possible Selves.” He asks a writer to imagine his or her life twenty years from now and write about how everything has gone as well as it possibly could. Details about how the events of things happened are to be included, as well as meaning, hope, and purpose. Again, writing for twenty minutes a night for three to four nights is part of the directions. It gives your subconscious time to ruminate and work through whatever needs more thought so you can make more progress the following night. I think this is the same reason you are asked to write in the evening.

The part about including details about how future events happened is important. Being specific helps you form a picture in your mind of what you want. It makes a picture with words. Adding meaning, hope, and purpose also makes your vision super clear. Clarity in meaning and purpose makes what you want more probable.

I can tell you in my version I am completely healthy, retired, and enjoying every day doing the things I love. Writing sets a powerful intention more than thoughts or spoken words. It involves being really clear on what you want and organizing your words in the best possible way to express your specific intentions. I found that reading what I wrote out loud to someone after I completed the exercise also very revealing because my soul really responded to the core beliefs that I hold the dearest about my future as I put it all out there to the universe. Writing your way to happiness is one positive affirmation after another.

Writing something down tells your brain that your ideas, thoughts, and goals are important.

Writing engages us with our thoughts and helps us process emotions. It makes those thoughts concrete. It prepares those thoughts for becoming actions. Writing really serves as a blueprint or map for all that unchartered emotional and mental territory. Regular journal writing about feelings or uncomfortable events can help lower anxiety and help a person sleep better.

In the world of living well with cancer, I have both read and written. I am still learning how to write what I know and believe about cancer.

This is how I break down words about cancer:

  • Medical journals/scientific articles on cancer findings/advancements. I’ve avoided reading many of these articles and journals as they aren’t written for patients. Once it was suggested I read one per month, but I found them confusing. Or upsetting. Or not applicable.
  • Test results also can be confusing (or upsetting, or have unclear applications), however, these are much more important to understand because they affect the patient intimately.
  • A personal health journal to document the factual side of a cancer diagnosis. Surgeries, treatments, radiation, medications, side effects, tests, appointments, and schedules fall into this category.
  • Diaries/journal writing from survivors, thrivers, lifers, however a person best identifies. There are narratives filled with tips. Some write about living with cancer. Some write about beating cancer. Some write about dying from cancer.
  • Fictional stories where characters have cancer. They read differently than biographical accounts but contain many of the same sentiments of life and/or death. Some hit the mark – others do not.
  • Advocacy writing that argues for better research and treatments for later stage cancer patients. In my opinion, the world needs more of this kind of writing. People focus on the wrong drivers of “awareness” or accuse women and men of being “negative” if they write about the hard, scary, and ugly parts of cancer. Change will come through advocacy. Current widespread attitudes need to be challenged.
  • Celebrities sharing their “I never let cancer get the best of me” stories. How courageous . . . and . . . inspiring? I think it’s just ducky if they never experienced one moment of fear, doubt, or anger. If you can’t tell, I don’t believe them. I would be more impressed if they used their platform in the public eye (that is much more far-reaching than mine) to put a mark on metastatic breast cancer that can’t be ignored or dismissed. It makes me sad. I feel like they don’t understand. Maybe they can wear pink and that will make it all better.
  • Private writing reflecting on some of the questions above or your own.
  • A few write blogs. 😉

Am I missing any?

Writing forces a person to process a pesky thought that has been floating about unrecognized or undefined. Once on paper (or the computer), it lets you see what you were thinking or feeling. If it isn’t quite right, you revise until your inner voice has spoken.

I end this post how I began it: Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.

Van Gogh and Hope

Did the Impressionist Movement only give us artistic masterpieces and inspire other artists for years to come? Please note I use the word “only” loosely. My answer would be an emphatic NO. These artists also gave and continue to give us hope.

Vincent van Gogh may not initially stand out as a hopeful figure. He struggled with both his mental and physical health. His most famous paintings will always be his main contribution to the world. Starry Night is one of my favorites.

Screen Shot 2019-06-05 at 10.06.50 PM
Van Gogh painted Starry Night in 1889 during his stay in an asylum near Saint-Rémy-de-Provence.

Today’s post combines my love for inspiring quotes with blogging. Lately, I’ve come across several quotes from Van Gogh that have blown me away. I do not know in what context he said them or really if they were significant to him at all. I tend to believe they were significant to him based upon their content and some of his paintings. These are some of his words that have inspired me.

“Be clearly aware of the stars and infinity on high. Then life seems almost enchanted after all.”  ~ Vincent van Gogh

Life is enchanted. It’s easy to get wrapped up in its day-to-day minutia. There’s a repeating cycle of laundry, groceries, cleaning, yard work, and for me, medical appointments. The time I spend trying to live well with cancer feels so far away from noticing moments of infinity on high. There is always something health related even if it’s a little something. Daily medications are a good example. I see my port bumping out from my chest every day. My wig. These all are routine things but constant reminders of how my life is different. Making time to recognize and take in infinity is a must because it provides balance and perspective to life in my medical world.

It also sometimes feels like everyone is so focused on their own lives that moments where we interact with one another in meaningful ways are fleeting. Stores are understaffed. Customer service has all but disappeared in some businesses. Friends are in a rush. I treasure time with them. Social media, texts, and emojis replace conversations. Living life through social media is not very enchanting. I live in this world, too. Emojis are quick, effective, and sometimes highly amusing.

Looking up at the stars reminds me how big the universe is and that all my big problems are really small. People don’t make time to gaze at the stars and wonder anymore. Unless you live in the countryside far away from man-made light, getting to see a true starry night where shooting stars are common and a person can witness infinity on high is hard. City stars are not the same as country stars. I remember a geography course for graduate credit I took in Ecuador around the year 2000. It was in the jungles off of the Napo River where darkness closed in all around me where I saw the best starscape of my life. Utter darkness met me in every direction except upwards. Stars bedazzled the dark above. I only took them in for a few minutes because we were encouraged not to stay outside very long in the blackness for our own protection. Large cats stalked unseen and unheard in the night. Yet, for a few sacred moments, I saw the heavens like never before. It stays with me as a singular moment I’ll remember forever.

“I confess I do not know why, but looking at the stars always makes me dream.” ~ Vincent van Gogh

Dreams give us hope. We wish upon stars. Stars awe us. Songs are sung wondering what they are made of and comparing them to diamonds. My dad sang Twinkle Twinkle Little Star nightly to me. Starshine has always mesmerized me. If light from stars can travel trillions of miles to reach us, then can’t we also believe our dreams may come true? Can I wish to live? Can I wish to be completely healthy again? So often when we dream while sleeping, we don’t remember what we dreamt when we wake up. We can control what we dream when looking at stars and dream of what makes us happy.

Did Van Gogh say these statements before or after he painted his masterpiece? I don’t know. It doesn’t matter to me. It is more than enough that he said them because it makes me look at my favorite painting of his with more wonder and awe. I work hard to wonder and awe about life as much as possible as someone with metastatic breast cancer.

“If you hear a voice within you say you cannot paint, then by all means paint and that voice will be silenced.”   ~ Vincent van Gogh

 

IMG_0895
My attempt to create a Ukrainian egg in the style of Van Gogh.

Am I a painter? No. I am confident there would be voices other than an inner voice confirming it. Even so, I do believe in doing the thing I think I can’t do. I do plenty of new things (new hikes, bike paths, foods, small risks). I do plenty of hard things (conflict, scans, side effects, funerals). I think Van Gogh was thinking about all the opportunities we don’t pursue because we convince ourselves we can’t for any number of reasons. The negative inner voice is quelled when I take a NO and turn it into a YES. Maybe this quote of his is telling me is I should give painting more of a try. I’m up for finger painting. The swirls of color would feel so Van Gogh.

“Close friends are truly life’s treasures. Sometimes they know us better than we know ourselves. With gentle honesty, they are there to guide and support us, to share our laughter and our tears. Their presence reminds us that we are never really alone.”   ~ Vincent van Gogh

And . . .

“I wish they would take me as I am.”    ~ Vincent van Gogh
 

Friends take us as we are. Those who don’t are not friends or worth the trouble. My need to belong has always caused me anxiety. There are still times when I feel left out. Like Vincent, I wish everyone would take me as I am. I wish I could be okay with it when some don’t. The people who don’t aren’t worth my time. I’m reminded I only need to belong to myself.

“I think that I still have it in my heart someday to paint a bookshop with the front yellow and pink in the evening…like a light in the midst of the darkness.”   ~ Vincent van Gogh

Why a bookshop? He could have said a flower shop, a café, a market, a boutique, or any number of storefronts could be yellow and pink in the evening. Van Gogh also spoke of light. Reading is light. It gives joy, knowledge, and self-awareness. Reading can be a source of hope. Light is hope. Once again, I return to ideas of stars being the light in the midst of darkness. Books are like stars. Books shine light in the midst of darkness.

“Many people seem to think it foolish, even superstitious, to believe that the world could still change for the better. And it is true that in winter it is sometimes so bitingly cold that one is tempted to say, ‘What do I care if there is a summer; its warmth is no help to me now.’ Yes, evil often seems to surpass good. But then, in spite of us, and without our permission, there comes, at last, an end to the bitter frosts. One morning the wind turns, and there is a thaw. And so I must still have hope.”    ~ Vincent van Gogh

Call me foolish for I am one of those people who believes that the world can still change for the better. There is more goodness in the world than badness. There will always be more heroes than villains.

Springs and summers follow the coldest winters. Having said that, spring sure took its sweet time this year.

I must have hope. I must maintain hope that treatments are discovered in time to save me, to save everyone with cancer. I believe in targeted therapies that are matched to patients who have a strong likelihood of responding well to those treatments. More research is needed to develop more of these. Research equals hope. Hope is my driving force and motivation in advocating for more research directed to treatments for advanced stage cancers. I do my best to stay strong and healthy which feeds my hope. I do what I can to financially support research for metastatic breast cancer. I still have hope.

Van Gogh has said he wanted his work to express “sincere human feeling.” He succeeded many times over and over again. Hope is a kind of feeling that warms, intensifies, and empowers. How he captured this quality in his art so that it still evokes such an emotional response over a hundred years later is a mystery to me. He had an extraordinary gift as an artist. His art and words continue to give hope.

Immense and everlasting hope.

Individualized Survivorship

I was half listening to a show on TV many, many months back, and whatever I was watching touched on the importance of survivorship plans for cancer patients. I shifted my focus more intently to find out how these differed from what I thought of as a treatment plan. The specific TV segment ended before it began, and it never went into enough depth to even explain what a survivorship plan was other than a detailed medical plan for continued care and survival. To me, this translated that a survivorship plan was merely an extended treatment plan.

I took to the internet and survivorship plans did seem to have a very medical tilt to them. These plans looked great in that they contained all your pertinent information about your past treatments and planning for future care in one spot. They were very similar to my health journal that I take for medical office visits. For me, a drawback is they are narrow in scope where only the medical aspects of continued health are part of the plan. They are forms.

Survivorship can’t be condensed into a form.

list-2389219__480.pixabay.com

At the beginning of treatment, I was given a piece of paper with blanks for me to fill in with all the particulars about diagnosis, surgeries, treatments, beginning and end dates, etc. It was a fine centralized place for information at a time when life suddenly was more overwhelming than ever, but rather limited for the long haul. It remained a good reference tool.

Some survivorship plans out there are better than others. One of the better ones I’ve found comes from the Minnesota Cancer Alliance, created by Karen Karls, a survivor from Grand Rapids, Minnesota. In addition to giving space for a historical documentation of dates and treatments, it provides great questions and things to think about for follow-up care. It looks like an awesome resource. The actual survivorship plan can be found here. Pick and choose what may work for your needs since it is lengthy.

I would add to this resource additional space or pages for any continued treatments needed if you are metastatic and have need for an ongoing list that can still be somewhat at a glance to provide an overall picture. It would have medicines, beginning/ending dates, side effects, results, and an area for why you switched or for additional notes. I use a spreadsheet to accomplish this for my needs.

I want a healing plan. In my mind, a healing plan combines the medical aspects of a survivorship plan (treatment plan) and the complementary pieces added to ongoing medical plans for complete care. A healing plan encompasses all of it. As a survivor, you are the executive in charge of connecting all the dots between your oncologist, primary care provider, naturopaths, acupuncturist, massage therapist, mental health provider, and any other therapies or services you seek for better health. This sounds like the job of a patient navigator, but the role of the patient navigator stays within an integrative health care network. He or she can put you in touch with approved services within a network. As soon as you want to seek something complementary outside of the system, you are on your own. Incidentally, they also haven’t been too keen on hearing how I think a patient navigator differs from a survivor navigator, probably because it opens up too many potential liability issues. It makes me mad the kinds of wrenches that get thrown in the way of someone’s best health.

A survivor navigator is hereby decreed a new position.

It is one of great worth for which you will receive no monetary pay. You are self-employed and get all the benefits from your new position. Maybe someday health care will see the wisdom of multiple services (even if they are outside the system) working in tandem with efficient communication and patient information sharing. Research should be doing A LOT more sharing of their discoveries and resources to find a cure. It only seems logical. What is crucial to remember as your own survivor navigator is that you must communicate important details of your healing plan to relevant parties. For example, your oncologist should know if you’re adding any new supplements to your health regiment because they may interact with treatments or other prescriptions.

They also may not. I have heard “we don’t have evidence for how these herbal supplements interact with drug x” a couple of times.

I try not to roll my eyes too loudly.

Translated, it means “there isn’t any evidence because big pharma will never sponsor such a study since it may be discovered something cheaper and more available works even better than drug x.”

I doubt there will ever be any such studies. I do not have medical training and am not making medical claims. The above are my own opinions which I openly share with my medical team. You need to do your research, have relevant conversations, and make the decision that you feel is best for you. I am not a doctor.

I do know some of the supplements I take, many of which have been suggested by my oncologist, have helped my body feel better and move more effectively.

Maybe it’s too pie in the sky to think that each patient can have a personal assistant to schedule every need the patient has and keep it all straight. Call me a dreamer. I’d love to have a person like that assigned to me, but it looks like I am that person and I’m already here doing the job. Right now it’s a seed idea that has the potential to grow into something real for others. Somehow this person has to have reach outside of a provider network to connect patients to complementary resources without taking on potential risks in so doing.

Health care is better when people work together.

In education, students with special education needs have what is known as an Individualized Education Plan, or IEP for short. Every learner has different needs. The goal is for targeted instruction to each individual student. In theory, all students have an IEP, most being informal and not legally binding like an official IEP. A student receives his/her best education when teachers work together as a team for a specific learning outcome. A healing plan is much like an IEP in that it’s individualized to the individual.

People are working together for a specific health outcome.

Think of it as a personal Individualized Health Plan, or IHP to stick with the acronym pattern.

Screen Shot 2019-02-10 at 7.34.27 PM

I have a lot of people and strategies in my corner supporting my best health. So much is crammed into that corner that it’s spreading out and filling other spaces and other corners. For me, this is a good thing because of the many options it provides at my disposal. I have developed a strength as an advocate for my own health that continues to evolve. If I relied solely on the medical realm, I would have limited myself to a very narrow scope of what is available. Components like a naturopath, acupuncture, and energy work receive a very luke warm reception so I steer clear of those when having specific medical discussions. Fitness, nutrition, meditation, and science-backed inquiries get more attention. People accept and believe different things are effective. Your healing plan will be individualized and fluid, just like you. Mine sure has changed over time. Use your best judgment and you will develop one that feels right for you.

A brief note: My last few posts have focused more on the medical side of my life as a cancer patient. I’ve chosen my words deliberately and have tried to convey that I support my doctors, nurses, and everyone on my team that cares for me. I fully support them. I have not expressed myself well enough if I have fallen short in conveying that message. I have also chosen my words carefully to make my voice heard as a patient. Being an involved patient doesn’t mean I am against the medical profession. Sure, there are things I would like to see change. It’s a huge motivator as I write specific posts. The idea that doctors and patients work together is key to all of it. I strive to work with them and find the best way for that to happen. An individualized health plan is part of what can help everyone work together. Health care is better when everyone involved works together.

 

Consider responding:

  • What do you feel are the most important parts of your individualized health plan?
  • In what ways have you advocated for yourself in terms of health or something else?