Jul 082016
 
Invisible illnesses and daily pills

Chronic and invisible illnesses can separate from family members that need to hear our stories

If you’re like me, chronic and invisible illnesses come towards the bottom of the list of things you’d like to write about yourself. It’s not just immersing yourself in the negativity. Although the term “invisible illness” applies “to any medical condition that is not outwardly visible to others,” according to Social Work Today, some illnesses (heart disease, cancer) seem to generate support from loved ones, while others leave sufferers socially isolated.

Many with invisible illnesses frequently encounter people who, although they’ve never had a license to practice medicine feel beholden to second guess other people’s health status or dispense dismissive medical advice.

I wish Scary Mommy (Christine Organ) would write a post to put a stop to the shaming that people with chronic and invisible illnesses face, like she did with Put Down Your Pitchforks and Cut Moms Some Slack.
I’m happy to see courageous stories starting to pepper the blogosphere, in spite of society’s wont to Monday morning quarterback. Sites like YouDontLookSick.com are giving voices to those who feel isolated.

Why Stories of Invisible Illnesses Are Important to Tell.

Stories of struggles and resilience inspire and promote understanding. Unfortunately, those stories don’t always end with a change of fortune. A Job-esque restoration of wealth and family wholeness, or some other version of happily-ever-after. Or a cure.

Neither is that necessarily the message that loved ones need to hear.

Resilience isn’t about waiting for the tide to turn. It’s about learning to swim in turbulent water, or reconciling yourself to staying on the shore. A 15-year-old in my life recently advised a friend who is struggling with depression. “I don’t think this is something you can make go away. But, I think it is something you can learn to live with.” That’s what our stories can illustrate.

Explain your illness.

Writing about invisible illnesses

Writing about invisible illnesses, though hard, can promote understanding.

If you’re thinking, “I shouldn’t have to,” I’m with you. At least partly. On the other hand, , you may also want to promote understanding. Write from the heart or try one of these strategies:

  1. Quote from reputable sources. The medical community’s debates over a disease’s diagnosis and treatment can  undermine patient support. Have there been new studies? Protocols? Perhaps you can borrow a quote from National Institutes of Health or John Hopkins—an institution that even Aunt Betty will believe in.
  2. Get help from an advocacy group. Most people aren’t trying to be complete jerks. If there is literature that explains how family members can be supportive, share it. (If you quote an excerpt, reference back to the original so people can read the complete article.)
  3. Write a third person account and provide an outside perspective. Especially if you feel family members have made up their minds without facts, someone else’s situation may open their eyes.
  4. Rather than educate loved ones on invisible illnesses, help them understand the symptoms you experience. What no-see-ums do you face daily, such as joint pain, shortness of breath, lack of energy?

Explain what’s so hurtful about the folks that don’t get it.

Back when I was at my worst with chronic Lyme disease, I wanted to wear my positive Western Blot like a crest on a soccer uniform, and my doctors’ resumes around my neck.

The questions people would ask would just increase my emotional distress.

“Are you sure it’s not something simple, like lack of sleep?”  Are you sure you’re not suffering from something simple like NO tact and NO brains?

“Maybe if you went out more, you’d get your mind off of it. . .” Let’s see, if I could walk 100 yards or string five words together in a sentence I might be able to go out for an evening. Obviously, I’m just staying in ‘cause I love single person pity-parties..

“A PICC line seems a little drastic. . .”   Thank you. I graduated summa cum laude with a triple major, but I’m incapable of processing my doctor’s advice. Good thing that you, almost total stranger, are here to help me through.

Of course, I never said those italicized things. Most of the time, I’d mumble something inane. It wasn’t simply that brain fog made me too inarticulate to debate. I didn’t see the reason I needed to.

It’s a pity ASweetLife.org’s handy dandy email-able 15 Things Not to Say to Someone with a Chronic or Invisible Illness wasn’t around back then. Every one of those things hits the nail on the head, and they explain why those questions are things are counter-productive, if not down-right insulting, while putting the snarkiness on hold.  Aside: Personally, I’d add a #16.  If you’re tempted to begin a sentence with “I don’t mean any offense, but…” don’t say that sentence.

Let loved ones know how they can be supportive and helpful.  What do you need? What makes it harder for you?

Tell the story of how you coped.

Stories are more powerful than facts. Anyone can debate the facts of an invisible illness, but no one can deny your story.

  1. What kind of onset did your illness have?
  2. How did your life change as you became symptomatic?
  3. How hard was the process of having your illness diagnosed?
  4. Was your case stereotypical or not? How did that impact the diagnosis and treatment?
  5. Did you have problems finding qualified medical advice?
  6. Who supported you during that time?
  7. Who helped with the kids?
  8. How did you explain changes to your spouse, kids, and other loved ones?
  9. Is this something that other family members will likely inherit?

Explain your new normal

When the rheumatologist I saw, diagnosed Fibromyalgia, he handed me a little tri-fold brochure on ‘Coping.’ A little bullet point recommended changing vocation or career path.  Simple huh? Not.  Explain why as you tell your story.

  1. What is your “normal” day?
  2. What limitations do you face?
  3. What limitations are you unable to accept?
  4. Have you had to change your vocation?
  5. Have you had to change your lifestyle, home, or family routines?
  6. How have you made your peace with your invisible illness or disability?
  7. Has the illness progressed to visible, i.e., do you sometimes use a cane or wheel chair?
  8. Have you turned to advocacy?
  9. What helps you get through?

Your Turn:

Have you told your story of coping with chronic or invisible illness? How did it go over? What would you recommend?

Jun 042016
 
Daddy with childhood dog

Animal stories reveal character. Think about your family members and which animal stories you could tell.

My neighbor Frank likes to say that the way people act around dogs shows what type of person they really are. He’s right. Animal stories reveal character. Frank has never gone so far as to say that if someone doesn’t like dogs, they have questionable friendship potential, but I suspect that thought has crossed his mind.

How Animal Stories Reveal Character

John Grogan’s memoir, Marley & Me: Life and Love with the World’s Worst Dog is a great example of how animal stories reveal character. In Your Life is a Book: How to Craft & Publish Your Memoir, Brenda Peterson and Sarah Jane Freymann explain the popularity of the yellow lab as a character. “One of the reasons Marley is such a beloved character … is because Grogan reveals his dog’s flaws as well as his joys.” The same holds true for the author. We don’t just love Marley. Continue reading »

May 272016
 
What else have you lost quote by Havelock Ellis

What else have you lost? How did that loss teach the fine art of living?

Grief often rears its dark, draining head, not just when someone dies.  The onset of many life crises is the loss of something. A relationship, a value, a sense of purpose.  We’ve all experienced a loss of a pet or cherished object (See Writing Your Lost and Found Story.) But what else have you lost during your lifetime?

Loss of a Relationship, Sense of Identity

A loss of a relationship can also entail a loss of an identity. Our worldview changes when life chooses to make an illegal U-turn.

Recently, a friend of mine when through a time of anguish that makes me feel neurotic grieving over my perfectly normal empty nest. Her 20-year-old daughter disappeared from a rehab facility in a major city many hours away from home. For two eternally long months, there was no sign of her child.

Finally, by chance, driving along a major thoroughfare in her own city, she spotted her daughter. The reunion was also a moment of heartbreak. My friend has a hard time talking about it. Though she temporarily located her daughter, my friend’s world had shifted on its axis. In addition to missing her daughter’s physical presence in her home—in her life, the shroud of adulthood that her daughter now possesses limits her ability to help her child who suffers from mental illness and addiction.

When have you had to make peace with a new version of “normal”? A divorce, job loss, or career change can also spark feeling of a loss of identity. How did you right yourself? How did you regain your sense of self? These make great stories, stories with the power to connect across generations.

Innocence Lost

Another friend tells of her pre-teen loss of innocence. The Oakland County child killer and the panic he instilled in the entire Detroit metro area robbed her and her friends of carefree afternoons, riding bikes to each other’s houses. Of going out to play out from under the anxious, watchful eyes of their parents. The bubble of invincibility that buffets children against the horrors of the adult world popped. In its place came an imagination that ran rampant. It colored not only her own development, but the eventual choices she would make as a parent.

Loss of Physical Ability, Memory

There are things that our mortal, frailer-than-we’d-like-to-admit bodies cheat us out of as well. They betray our still active minds by refusing to work, or at least work as well as we’d like. They force us to fight disease instead of those life battles we want to mount.

Perhaps you’ve had to bear helpless witness as a particularly cruel disease causes a family member to misplace memories, even their sanity. Past moments, even the recognition of loved ones, fade into oblivion. Consider writing about these moments of heartache; they tell stories of love and devotion.

What else have you lost?

Along the road, whether by virtue of physical maladies or of the life sh** that happens, we lose things. Intangible things. Confidence. Independence. Hope. Faith. Courage. Our groove.

Don’t you think these moments are important to share? What would you want your loved ones, especially those of future generations, to take away from your story? Of course, they’ll be touched by your loss, but they can also learn from your healing or your renewed perspective. Perhaps they’ll even discover that resilience isn’t inborn, but something that can be gathered along the way, even on the roughest, dirtiest roads.

Havelock Ellis is quoted as saying, “All the art of living lies in a fine mingling of letting go and holding on.” Let your loved ones know how you did that.

May 192016
 
 Fathers' Day Ideas illustrated by my husband

Since this guy is notoriously hard to buy for, I’m always searching for more meaningful Fathers’ Day Ideas.

Is it just me, or are fathers more difficult to buy for than mothers?  I’m always short of fathers’ day ideas. My husband has a box in the bedroom with yet-to-be-used gifts he’s received.  He claims he appreciates all of them, but I’m always searching for more meaningful gifts, particularly those that will bring precious memories alive.

Spending Time with Dad

Making memories trump recalling memories.  First and foremost, focus on those gifts and ideas that you can look back on with fondness in years to come.  Bonus points if you can do something that will evoke memories of the father in question’s own childhood adventures with his dad.  Going fishing or hiking. Building something in the workshop. Perhaps instead of making a craft for dad, the kids can make a craft with dad on Fathers’ Day.

Memory Gifts

Fathers' Day Handprint In addition to those mentioned in 4 Ways to Share Memories with Dad, I’ve marked some great memory related Fathers’ Day ideas on my Fathers’ Day Ideas Pinterest Board. One that really struck a chord with me was carrotsareorange.com’s idea of “Our Little Book of Experiences,” a creative take on the ubiquitous coupon book. You can fill this one with memories of great moments spent with dad or promises of future quality time together.

In many offices, desk space is at a premium. I particularly like Shutterfly’s customized smart-phone case, which doesn’t require Dad to give up precious desk-top real estate.  Photobooks are also always well-received. Consider filling one with photos of Dad’s success at his hobby, such as finished wood-working projects, his garden in full-bloom, or photos of him coaching little league.

Preserve Your History with Dad

Topping my list of Fathers’ Day Ideas is preserving your history with your father, and Story Corps presents a wonderful opportunity to do just that. Founded to increase understanding through audio interviews, their mobile booth travels around the country recording moving conversations. They’ve also launched a Story Corps smartphone app. The app features the same meaningful question prompts and, like the official booths, uploads interviews to the Library of Congress.

Grandpa Fathers’ Day Ideas

You don’t want to get me started about how hard it is to find a present for my father-in-law. He doesn’t want for much. If he does want something, he goes out and buys it.  Now that he and my mother-in-law have down-sized, they don’t want “clutter.”  So, gift card it is….

Give your difficult-to-buy-for dad or granddad a piece of their family history. You can use FamilySearch.org or your library’s edition of Ancestry.com to make him a starter pedigree chart. And, rude as it sounds, you can give your dad a DNA test.  Not to confirm paternity, mind you, but to give him an insight into his heritage.

Want More Fathers’ Day Ideas?

Your Turn

What was your favorite Fathers’ Day gift? Have any other memory-related or memorable Fathers’ Day Ideas?  Please leave your thoughts.

Apr 222016
 
Make stories relevant show emotions

When you make your family stories relevant, they pull at the heart strings of your readers.

There’s a point to sharing ancestors’ stories—or at least there should be. Educate. Connect. Inspire.  That happens best when you’re able to make family stories relevant.

I could share a detailed tale about my grandmother, one that includes every bit of historical minutiae that I’ve been able to find. But why would you want to read that? She’s my grandmother, not yours. If I want you to read them—I need to make my family stories relevant to you, the reader. I need to make you care.

Making stories relevant has very little to do with spinning (or citing) an extraordinary tale. It has more to do with revealing the humanity within that narrative. Shauna Niequist writes:

I’m less and less interested in the ruminations of a scholar and more and more compelled by stories with grit and texture and blood and guts and humanity. I’m compelled by stories from everyday people whose lives sound a lot more like mine than the stories of superstars and high achievers…

How do you make your family stories relevant?

How do you make your characters pull at their descendants’(your readers) heart-strings?  How do you achieve that “there but for the grace of God, there go I” type of feeling?

The American Press Institute explains that we care most about those things that affect us. Just as we care more about the local forecast than the one across the country, our hearts are more likely to go out to a local family or a relative than a stranger several states away.

The article, Good Stories Prove their Relevance to the Audience, suggests making the ‘common ‘proximity’ of interests and emotions of the story clear. That works particularly well for those of us trying to make our family stories relevant.

The reader may identify with a range of life experiences, from the emotional shock of losing a job or worrying about a sick child to mundane tasks like the weekly trip to the grocery store or filling the car with gas…

How was your family member or ancestor relatable?  Was he in constant fear of not being able to provide for his children? Was she a mother that had buried children? Husbands? A reluctant matriarch?

Give your readers a passport into the past.

Help your readers understand why they would want visit the foreign soils of the past. Encourage them to use their imagination. What would it be like to live in that time period? What would family members be like if they lived in modern times? What would it have been like to have them as a friend? A grandparent? How would you have managed in their circumstances?

Write about decisions and circumstances.

Part of making a story relatable comes through promoting understanding through the setting. Not just that it was a sunny day in 1893, but by highlighting social context. What might the family dream for a little girl born that year? Today we dream that a daughter might be President. Back in 1893, many parents simply hoped that the child would survive past age five. Women didn’t have many rights. Perhaps they dreamed of a desirable spouse and a comfortable standard of living. Bring those universal human hopes into your story.

Often, we’re limit our stories to the dates of death and birth. What decisions did the person make? What choices did they have? What obstacles did they face? What resilience did they show throughout their lives?

Your connection matters

Let’s face it. If you have no personal connection to the person you’re writing about, you can’t really expect your readers to connect to him or her either. As you start your family story, think why did you like, love, or admire that person? Why did they matter to you? Why does their story matter?

Is there little something about them that makes them more relatable? More human?  (Read Sneaky Grandma.)

Your Turn

How have you made your family stories relevant to your readers?

Apr 142016
 

Bumper sticker covered car

Do you have something to say about yourself? Image by RHoch (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

How do you tell people who you are? How would you give them a bumper sticker synopsis of yourself? (Of course, you could ask why you’d want to do that as well. As Rob Walker argues, “…bumper stickers are about declaration, not dialogue.” But let’s put that aside and indulge in the exercise. Consider it a brainstorming activity.)

What Would your Bumper Sticker say?

If you could tell the world who you are in just a few words, what would you say? If you were forced to have a bumper sticker—even if you’re anti-bumper sticker like me– what would you put on it? Continue reading »

Apr 072016
 
Time to take a stand with three people

There sometimes comes a time when keeping peace feels dishonest; it’s time to take a stand.

We want our memories and family stories to be warm and inviting. We want to welcome family into our lives—into our past—through our narratives.  Which is as it should be. But (you knew there was a but coming) that can mute us when it comes to issues that weigh heavily on our hearts and mind. Because not all our family members see things the same way, we self-censure, leaving out anything that is divisive. We don’t share the parts of ourselves that might alienate.

It’s like the old rule about not talking about religion and politics at the table. It keeps the peace, because it keeps anyone at the table from feeling marginalized.  We can focus on our commonalities, our friendship or familial love, without anyone feeling challenged.

Family Peace versus Honesty

Sometimes there comes a time when keeping your stance to yourself becomes—or feels—dishonest. You’re hiding something that you’re passionate about. You’re choking back hurt or offense on a regular basis.

Of course, only you can determine when it’s time to take a stand. You’re the only one in a position to determine if it’s worth crossing that line. You might choose deep breathing over a sparring match or negotiating a minefield of hurt feelings and estrangement.

When it’s Time to Take a Stand

My friend Bobby Ivory likes to say that meaningful discourse needs to “bring more light than heat.”  In other words, enlighten others without putting them on the defensive.  Not easy, I know, but worth the effort.

Writing allows you the luxury of ranting and raging to get your feeling onto paper, then editing those feelings into something you want to share with others. Something that will promote understanding. Insert your “I messages.”  Delete the accusations.

Using Stories to Take a Stand

Storytelling becomes the spoonful of sugar that makes the bitterest of medicine (or reality) go down. Not just in a metaphoric way. The cool people who study neuroscience have found that storytelling allows the listeners’ brain to process stories much differently than they do facts or debates. (Read The Science Behind Storytelling.)

Explain why you’re taking a stand

Please understand it's time to take a stand

Stories can promote understanding

Normally, when you tell your stories, you have the luxury of a friendly, captured audience. You’re ‘preaching to the choir.’ That’s not always the case when you take a stand.  Part of the art of persuasion is to invest your audience in your story. You can do that by explaining why you feel you have to take a stand.

You can even use a third person voice or example, if you don’t want to make the conversation a me-versus-you argument. For instance, if you’re opposed to North Carolina House Bill 2 (full disclosure, I am), you might tell the story of your good friend who is now uncomfortable traveling through the state and how you came to understand his or her situation. A simple rest stop becomes an anxiety attack. Perhaps he or she wonders why private decisions can’t simply remain private without having to suffer the humiliation of visiting an alternative restroom.

Touch hearts and imagination

Touch your readers’ hearts and imaginations by using sensory-rich examples that will help them envision your stance. For instance, when my sons asked why restrooms have to be gender specific in the first place, I tried to explain to them all the things that women do in bathrooms that are completely unrelated to relieving themselves. Since they claim I ruined dinner that day by talking about “adjusting the girls,” I figure I inspired their imaginations. (Apparently they think girls just do a super-thorough job of washing their hands and come out looking fabulous.)

Writing demeanor

When we speak, our body language helps us communicate. We can use open gestures, smiles, and friendly eye-contact to put listeners at ease. That’s harder in writing. As you write and edit, try to put yourself in your readers’ place. What turn of phrases would you use in speech to put them at ease?  How would you acknowledge and de-escalate their discomfiture? Incorporate those verbal tics into your writing.

Your Turn

When did you decide it was time to take a stand? How did that affect your story? How did you write (say) your piece?

 

Mar 072016
 
Paula Williams Madison and her definition of family

Paula Williams Madison puts the definition of family in a new light.

During RootsTech, I had the opportunity to meet and interview Paula Williams Madison, author of Finding Samuel Lowe: Harlem, Jamaica, China. Of course, there’s a lot more to Paula than authoring a bestselling memoir and a documentary by the same name. She’s the former top NBC executive for diversity.  She’s the winner of many awards, such as being listed among the “75 Most Powerful African Americans in Corporate America” (Black Enterprise magazine) and one of “Outstanding 50 Asian Americans in Business” (Asian American Business Development Center).

Her long list of accomplishments don’t say it all. She’s also a warm and gracious woman—a pleasure to interview.

Here’s our interview. Paula had some helpful advice for family history writers. She talked about how to decide what to share and the meaning of family. Continue reading »

Mar 022016
 

Form connections through stories is like hand holdingWriting coaches can help us with everything from developing a story arc to using better grammar. But, as storytellers, that’s not always what we crave. Great writing is, well, great. But family storytellers don’t just want to write better; we want to form connections through stories of the past. We want to connect with our readers, our family, and our family history.

How to Form Connections through Stories of the Past

This isn’t just another writing hoop to jump through. It’s not hard to form connections through stories of the past. It’s more of a question of writing with passion—and letting a little more of yourself shine through your writing. Continue reading »

Feb 092016
 
Rootstech 2016 bag and badge

The badge and bag are in the suitcase, but is the RootsTech 2016 experience really over?

Inevitably—or at least nearly so—bloggers post summaries of their RootsTech experiences. Speaking and serving as a RootsTech 2016 Ambassador has been a whirlwind. I learned a lot and met a ton of wonderful people. It’d be nice to tie it up with a nice bow as I leave Salt Lake City.

On the other hand, it seems inappropriate.

Summaries feel like something has ended. And, although the conference is over—and I have the weariness to prove it—in many ways it hasn’t ended. Continue reading »