When Someone You Love has Chronic Pain

A decade ago I suffered a bulging, herniated disc in my back. It took months to get in to see a specialist, get a diagnosis, and find a treatment plan that worked to heal my body. For a year I dealt with constant, moderate-to-severe pain in my lower back, hips, and right leg.

Within weeks of my injury, I hardly recognized my life. The pain upstaged everything with its constant nagging. Sitting was particularly excruciating so my world shrank to a ten-mile radius around my home. My otherwise sharp and creative brain was scrambled into an unrecognizable slop. Sometimes the pain was so bad that I had trouble finishing sentences. My joyful, focused, and friendly personality morphed into something more impatient and irritable, always distracted, and often discouraged. Engaging with cherished friendships and hobbies became work, and that made me feel ashamed and frustrated.

A new back injury sustained this summer has me thinking of that dastardly year. As I make another slow and difficult climb toward wellness, I find myself drawing on lessons learned a decade ago. Coincidentally, I have several friends struggling with chronic pain right now, so it’s time to resurrect the “When Someone You Love” series. Here are some thoughts and tips on caring for people with chronic pain.

Believe in Pain You Cannot See
Unfortunately, we humans often only pick up on, and respond to, obvious signs of suffering: scabs and angry bruises, someone grimacing or limping, a limb wrapped in a brace or cast. Physical signs of pain trigger our compassion and helpfulness. But consider this—there are hundreds of conditions that cause physical pain which are invisible to others.

It can be difficult to accept that someone is in pain if you can’t see changes or limitations. So here’s your first opportunity to care well—believe your loved one when they say they are in pain. Tell or show them that you believe them. Ask how you can make adjustments or accommodations to make daily life more manageable for them.

Affirmation over Easy Answers
For many, chronic pain leads to challenging side effects: isolation from beloved friends and activities, irritability, physical and emotional fatigue, and loss of mental sharpness. Simple, everyday tasks become arduous challenges. Getting dressed winds you like running a 5k. Writing a daily report has the gravity of a dissertation. When you roll this nasty jumble of side effects together, you’re left feeling discouraged and disconnected. Less alive. Less you.

If one of your beloveds is in pain, then YOU are one of the best caregivers they could find. You’re even better than their doctors because you know who they are underneath all this pain. You can see what has changed and what has not. So, in real moments, tell them how you see their spirit or their strength shining through the pain. Have they done or said anything lately that displays their unique personality? Simply letting them know how and when you see them will be life-giving.

And please, steer clear from clichés or easy answers like “it’ll get better soon” or “God won’t give you more than you can handle” or “focus on the positive.” Caregiving clichés are like wielding a velvet hammer. Despite good intentions, they make suffering people feel like they are failing or inadequate, and they often amplify feelings of weakness. With some careful thought you’ll be able to do something much better—speak words that are true about them. Words that are empathetic and truly soothing.

Connect with Coping Skills & Self-care
Back in my chaplaincy days, I often asked my patients to reflect on times of pain or difficulty in their past. With those in mind, I’d then ask what worked, and what didn’t. How did they face those challenges head on? What things helped them get through an hour, a day, or a week? What kinds of practical support did they need from others?

This reflective process acknowledges that they are an important voice (even an expert voice) in their own care, and it reminds them that they already have valuable internal resources from which to draw.

Chronic pain may be new for your loved one, but you’ll find that coping skills and coping support are amazingly flexible. They tend to adapt to new scenarios. Help your loved one remember what’s worked in the past and encourage them to try it out now.

Other than coping skills, chronic pain sufferers need to practice self-care. Over the past three months, I’ve spent hours resting, and icing and heating my hurting back—otherwise known as caring for myself—but I’m often emotionally drained. Self-care for me right now is not the things I do everyday to get through the pain. Self-care is doing the things that nurture my soul when I’m healthy.

Last week I had what I call “a good pain day” so I went out, bought a movie ticket and a lime Diet Coke, and settled into the local theater’s leather recliner. This is one of my favorite me-time things to do. Unfortunately, the chair was too soft for my back so I didn’t make it through the whole film before I went home, but I was sublimely happy that I got out of the house and enjoyed half of a good movie. That outing restored my positivity for several days.

What does your loved one normally do to nurture their body/soul/spirit when they are healthy? Can they continue that self-care routine despite their pain? If so, encourage them stay engaged in these things.

Beware Treatment Suggestion Fatigue
Treatment Suggestion Fatigue is my evil pet name for a very real thing for chronic pain sufferers. When we share about our struggles with family and friends, these well-meaning people barrage us with advice.

“Have you heard of Dr. Adams and his revolutionary treatment?”

“Have you ever tried cryotherapy?”

“You should ask for vicodin. That’s the good stuff.”

“I just read about the wonders of fish oils!”

“My grandmother’s chicken soup cures all.”

“Physical therapy helped me after I broke my leg.”

Please hear this, friends. You all have different opinions of what is best, and what worked for you or your grandma. But what worked for you might not work for me. The pain of a broken leg is very different from nerve pain. You might rush toward prescription narcotics, but I may have five very important reasons why I won’t or can’t use them. So be cautious of how and when and what you suggest.

As a rule of thumb, ask a question before you make a suggestion. The questions “what have you tried?” and “are you looking for suggestions?” are far more caring than any sentence that starts with “you should try” or “for me the answer was…” Pain sufferers will hear the difference in your words. Asking questions first shows that you respect them as the intelligent, intuitive keeper of their body.

Special Note: When Chronic Pain is Here to Stay
Sadly, there are many painful conditions and diseases that last for years, even lifetimes. While most of us will celebrate an end to our chronic pain, for some pain will be part of their new normal. This type of chronic pain is a different beast altogether and deserves its own post, but I want take a moment to address this reality.

Overall, I encourage you to be compassionate — both to your loved one and to yourself — to be flexible, and to be keen listeners.

I’ve noted that dealing with pain effects mood and personality. It’s also true that long-endured struggles tend to change us. When chronic pain becomes lifetime pain, it will likely alter your beloved’s personality permanently. (Pause and read that last sentence again.) You’ll need to wrestle with and accept that they may never return to the same person you knew before the pain came. They may be more irritable, less positive, or have a new edge to their humor. But don’t give way to discouragement! The changes won’t be all bad.

My bouts with chronic pain have made me more sensitive and compassionate to others in pain. They’ve helped me let go of my need to be in control. I’ve learned to acknowledge and accept limitations, to be kinder to myself, to ask for help, and to really believe that needing help doesn’t mean I’m weak or pathetic. It means I’m human.

All of this ultimately encourages and challenges me to entrust more of my life to the all-powerful, loving God I worship. And in doing that, I become more whole.

May God bless you, caregiver, with abundant grace and peace. May you use the overflow to nurture your beloved’s health — body and soul. I pray for swift healing and for many moments of joy in the waiting.

Much love,
Corrie

What To Do with all of your Feelings about the Stanford Rape Case

Like many of you, I’ve been reading the daily articles about the Brock Turner rape case. And like many of you, I have strong feelings about Emily Doe’s rape and the fallout. Here’s what is churning in my gut… Compassion for Emily Doe’s pain. Disgust over Turner’s senseless act of sexual violence. Deep angst toward his apparent ignorance of the real issue—his reprehensible rape of a woman—and his lack of repentance for his crimes. Anger at Turner’s attorney for victim blaming during the trail. Outrage at Judge Persky’s sentencing and rationale. Helplessness that we live in a world so selfish and broken that any person would rape another.

All of these emotions leave me feeling very raw and weary. A small part of me wishes that Emily’s story didn’t affect me. I wish I could ignore this whole atrocity, turn away from the news, and protect myself from these terrible feelings; but I can’t. Thankfully, the larger part of my heart doesn’t want to turn away because Emily’s story is important and personal to me.

I live and work three miles from Stanford University. I may have passed Emily in Trader Joe’s. I may have steered my car around Brock Turner as he cycled to class on campus. These young people are my neighbors. Palo Alto is the community where I minister.

These events also feel personal because I worked with college students for six years. The things I witnessed among developing adults motivated me to understand abuse and to later become an abuse educator and victim’s advocate. When I was a hospital chaplain, I met with a few rape victims just hours after they were assaulted. As a pastor, I’ve supported many women who have been raped, molested, and abused in other ways. Reading Emily Doe’s story makes me recall a hundred other stories that I hold in the shadowy recesses of my heart.

Even though I haven’t experienced the pain of rape myself, the people and stories I’ve encountered in my career have ravaged my emotions. Supervisors advised me to keep an emotional distance in these situations. I really tried in the early years, but then I began to wonder—is there a way to remain impervious when a woman sits next to you and shakes as she recalls the most terrifying hours of her life? Now, I don’t think it’s possible to be fully human in those moments and remain emotionally detached. Not when you’ve heard a victim’s story, held her hand, seen her wounds, and shared her pain-filled silences.

I’m human. And when other humans are suffering, I hurt. Emily Doe’s story, and all of the stories that have rippled out from Brock Turner’s act of violence, hurt me. And from the outrage I see across social media, many of you are hurting too.

So what do I do when another horrifying story of injustice rips me open? What do we do with all these wildly raging emotions when we hear a story of such violence being done against a human being—especially when we aren’t directly involved in the situation?

Use them. Use the emotions.

The best advice I can give you is to gather up all of the emotions you feel churning inside you and turn them into fuel. Let the ferocity of your anger and the raised hackles of injustice motivate you to live a transformational life.

Don’t just be a person who seeks to do no harm to others. Be a person who actively looks for ways to protect the vulnerable, someone who steps forward to advocate for victims of all kinds in your sphere of influence—be it big or small. Our impassioned emotions might lead us to protests and rallies, to sign petitions to hold civic leaders accountable, or to volunteer with organizations that are doing their best to spread justice in our communities.

Not all of us will have the opportunity to directly intervene in an act of sexual violence like the Swedish graduate students, but all of us will have opportunities to care for someone who has been abused. In the United States, someone is sexually assaulted every two minutes. If you know four girls under the age of 18, at least one of them has experienced abuse. The same is true if you know six boys under 18.

Statistics indicate that all of us know or will know someone who has been abused in some way—sexually, emotionally, verbally, or spiritually. This fact may outrage and sadden us, but we don’t have to stop at feeling. We can allow those feelings to shape the way we interact with others. You may not know whom in your life shares Emily Doe’s story, but someone does. So it’s best to always speak and act with kindness because you never know the wounds people are hiding.

Choose to be a person who approaches people who are hurting. Listen attentively to their stories and do your best to understand their circumstances. Allow their painful experiences to expand and fill your stores of compassion. And if you are healthy and able, you might even sacrifice some of your time and ask how you might help carry their burdens or stand in solidarity with them.

For those of you who are shocked by Emily Doe’s story and don’t know much about sexual assault, allow your shock and horror to motivate you to learn about abuse—what it is, its prevalence, causes, and consequences.

If you are a parent or someone with direct influence over children, think critically about what language, attitudes, actions, and proverbs you pass on. Abuse is a learned behavior. You can be an adult who raises up compassionate, respectful, peacemaking children, the kind of children who grow into adults who jump off their bicycles and intervene when they see someone being raped.

And speaking of those two Swedes, I’m reminded that it’s not just the dark emotions of injustice that can change us and make us transformational, compassionate people. Along with all my anger and outrage over the Stanford rape case, there have also been healthy doses of inspiration. Every moment and movement of bravery and resilience and justice in this case has brought healing tears.

…we both have a choice. We can let this destroy us, I can remain angry and hurt and you can be in denial, or we can face it head on, I accept the pain, you accept the punishment, and we move on…Your life is not over, you have decades of years ahead to rewrite your story. The world is huge, it is so much bigger than Palo Alto and Stanford, and you will make a space for yourself in it where you can be useful and happy…

Emily Doe wrote that in her victim’s statement to the court. She wrote that to her rapist. That she is even able to think about Brock Turner’s future makes me stand in awe. Emily’s statement shows me that rape and violence and pain have not won. They are not the end of her story. Emily has not been extinguished by what Brock Turner did to her. Instead, she is rising up out of her horrifying ordeal, it seems, with her own expanded stores of compassion and understanding.

Maybe I’ll meet Emily Doe one day as I live and work near her. Maybe I won’t. But I’m so thankful that she had the courage to write and share her statement, her story. Emily, you’ve reminded me again of the beauty of the human spirit. You shine with it. Your story reignites my desire to be an advocate and a peacemaker, someone who is as kind to the grumpy woman in line at the grocery story as I am to someone who comes to my office for counseling.

Thank you to Emily Doe, and to all of the Emilys who have shared your stories with me over the years. Your pain has changed me. Your ability to overcome, and seeing you reemerge to life, has taught me how to endure and learn from my own hardships. Because of you, I choose to live in a way that helps others heal and thrive.

 

Most importantly, thank you to the two men who saved me, who I have yet to meet. I sleep with two bicycles that I drew taped above my bed to remind myself there are heroes in this story. That we are looking out for one another. To have known all of these people, to have felt their protection and love, is something I will never forget.

A Heart the Size of 12,000 Miles

For the first 18 years of my life I lived in Columbus, Ohio. For 17 of those years I lived in the same house. I attended two churches and three schools in all that time, surrounded by the same people. My parents had a solid and affectionate marriage (unless they attempted a home improvement project together), and I knew very few families affected by divorce or death. My childhood was a picture of stability. 29c4a78abd3f1b0c3e24c1d8b84e94d4 Ohio is a great place. The people are friendly. The housing and groceries are affordable. The weather isn’t unduly harsh in any season; and if you’re a college sports fan, Columbus is Mecca. Ohio is generally so well liked by its inhabitants, that people who grow up there tend to stick around for college. Then they start careers and nurture families there. As a middle schooler, I noticed that no one ever left. Well, that’s a bit of an exaggeration – some went to Carolina beaches for summer vacation, and in extreme cases a Ohioan might go to Indiana or Illinois for college – but everyone seemed destined to boomerang back.

I loved my childhood in the heart-shaped state, but when I pictured my future, I hoped for a bit more variety than the Midwestern suburbs I called home. Even if just for a while, I wanted to fly far away to something new. To experience new smells and flavors, and people with stories different from my own. I wanted my life to be big and vibrant, or at least for a little while, broader and more colorful than the corn and soybean fields that are Ohio’s backyard. So at 18, I chose an adventure.

In a graduating class of 500, I was one of two to choose California for college. I attended a small, private school in a quaint, coastal city. There I met people who used words like stoked and dude in everyday sentences the way I used the words happy and Ben. Girls went to class with bikinis under brand name cutoffs and tank tops; guys wore board shorts, t-shirts, and flip-flops stained with salt and sweat. Everyone looked beach-ready, but in a glossy magazine photo way. I’d never owned a pair of overalls in my life, but next to all the tanned, sleek bodies with their casual sophistication, it was as if every outfit I owned screamed farm girl!

Those four years at the beach were difficult but good for me. Despite my Midwestern-girl-next-door vibe, people were generally friendly and accepting. In California I discovered a love for learning and for the avocado. I learned that seafood is edible and delicious when fresh, that cyn is the abbreviation for canyon (that’s an embarrassing story), and that God wanted me to be a pastor. Even though I felt constantly oafish, that feeling got me to a moment every young woman needs – the moment when you look in the mirror and see yourself for exactly who you are, with all your strange beauty and glorious awkwardness, and you lift your chin and say, “This is who I am. And this is good.” And then you step into the sunshine and live.

Those early years in California helped me realize that life is too short and too important to let comparison or insecurity bridle me. I will probably never be thin. I will probably always laugh a little too loudly. I will continue to be more interested in maintaining my friendships than I am my appearance. I’ll bore people at parties with stories about my nieces and nephews. I’ll occasionally cry at work. I won’t stop myself from being goofy near babies. These are just a few of the things that make me, me. Sticking out in California helped me see myself. Because I felt the love of God shining on me even when I felt awkward, I was able to love myself in all my oafish glory.

That profound movement from insecurity to acceptance made me confident and courageous. It turned me into an adventurer who chooses newness and change, and who embraces discomfort and awkwardness, because those things are markers on a treasure map for the soul.

Though I think of it fondly, I never moved back to Ohio. Since my leap to the left coast, I’ve moved a total of 12,377 miles. I’ve lived at 11 different addresses across 5 states and Canada. I’ve lived in neighborhoods where being white and speaking English made me a minority. I’ve joined churches where standard potluck fare was spam and sushi rather than the chicken casseroles and apple pie of my childhood. I’ve also been able to travel to 18 countries on three continents.

This adventure has enriched me, but not without cost. I now have the eyes to see things like white privilege, poverty, racism, and systemic injustices – domestically and around the world. These are things you can’t unsee. They come with some nasty emotions like anger due to a sense of powerlessness, and a grief so thick it stains like mud. As painful as this descaling of my eyes has been, the good news is that these 12,000+ miles have enlarged my heart. My ability to listen well and be compassionate has expanded along with my worldview. Now I don’t want to only meet and hang out with people like me; that’s comfortable but boring. I’d rather seek out people who are different from me. I want to hear their stories, to laugh with them, to discover what makes them tick, and to have their friendship increase my vision for God’s handiwork.

Each new place, people and culture, has marked me in some way, but none have changed me fundamentally. I’m still Corrie – a friendly, somewhat clumsy, unsophisticated, indoorsy, Midwestern girl – but now I’m layered with other landscapes, stories, and experiences. When I look in a mirror now, I see the same person I was at 18, but there’s a shimmer. Like the moment when colors burst and blend as you slowly turn the barrel of a kaleidoscope, there’s a richness to me that wasn’t there at 18. If you look and listen carefully, you can see it in my gaze and hear it in my laugh.

The best way to learn a new neighborhood is to go out and get lost. Leave the GPS at home and go wander. Walk down a quiet side street or get in the car and take five random turns, just to see where they lead. It’s a little scary to do this, especially in a foreign country, but when you do the feelings of being lost and out-of-place fade quickly. Habitual wandering makes unknown landscapes familiar. And one day you will realize that those unassuming side streets are your best route home.

Geriantics

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Grandpa Ford in 2007 with his transition lenses. You should see his new modern frames!

I spend a lot of time with elderly people. Even if my visits weren’t part of my work, I would still find a way to be with them. Everyday the elderly astound and inspire me with their stories of hardships overcome, of the ripple effects of wars fought abroad and in the homes down the street, of great loves lost or found, of building families and communities with hard work greased with the intrepid hope for something better. Their stories are better than any Facebook status or Tweet I’ve ever read.

I wish I could take you along with me and introduce you to some of my friends. I wish you could listen to their stories with me, to laugh with me at their playful antics, to be wrapped in the musk of an eighty-year-old afghan, to feel the history in their paper-thin skin as they brush a kiss on your cheek or hold your hand like you’re a beloved childhood friend. I want so much for you to understand how much you would gain if you knew, really knew, someone who is 107 or 99, or 84.

Last week I met a woman who grew up in New York. Her voice still carries the slanting tones of Brooklyn. She told me how she met her husband on the “broadwalk” of Staten Island at age fifteen and married him eight years later in a double ceremony with her twin sister and her beau. She reminisced for an hour about the house they saved for and finally bought on the Island and how she and her girlfriends in the neighborhood would gab every night on her front porch. The love she had for her life beamed from her eyes. Her glow dimmed a bit as pointed her crooked, arthritic finger along her backyard and talked about the cement-block walls that separate homes and people from being neighborly in this retirement state she calls “No Man’s Land”. She shared about the death of her friends, one by one, until she outlived them all. She held my hand, patted my knee and called me honey, saying, “It’s so nice to have someone to talk to, someone who will laugh with me and keep my secrets. My friends — I wish you knew them — they were beautiful women, just beautiful.”

Not too long ago I met a beautiful woman whose married name is Lovette. She told me all about being the first woman in her family to go to college. She surpassed that by earning a Master’s degree and spent her career working for the homeless in her city. Mrs. Lovette’s Eddy is long since dead, but she speaks of him with such affection he may as well be sitting on the couch with us. I’ll never forget when she looked at me with half-winked eyes and told me, “That man! He came by his name honestly. Girl, did he love me!” Who says passion fades with age? Mrs. Lovette knows otherwise.

It’s rare that a week goes by without an offer of adoption or a marriage proposal. One afternoon I visited a man whose wife was away on an errand. As I sang to him “My Bonny Lies Over the Ocean” and “You Are My Sunshine”, he gripped my hand and winked. He flirted with me shamelessly for a half hour — dementia making him forget that he was already married and old enough to be my grandfather. A colleague later told me that after I left the room he said, “I want to marry that girl. What a girl! Make her come back so I can propose.” My computer was directly across from his room, in sight of the recliner where he sat. He winked and waved for hours, calling out, “Hey sweetie!”  I couldn’t help but wave back. (I may have given in and winked too, but don’t tell my boyfriend.)

The effects of dementia are difficult for family members to witness. Imagine your mother looking hale and hearty as she wears a diaper and no longer remembers your name or your father always wearing a blank expression, no longer capable of speech, of dressing or feeding himself. As a stranger, I have no memories to compare to the present reality to cause me grief. I meet people only as they are and approach each of them as beloved creations of God worthy of my respect, time and care. Sometimes these visits are easy and delightful and other times they are difficult puzzles.

I met Manny in a memory care unit of an assisted living facility. He was snoring (with drool) in a chair ten feet from a blaring TV. A touch to his hand woke him up. I tried to engage him in simple conversation to assess his comprehension level. After just a few moments it was clear that Manny has few verbal capabilities left. His words were garbled nonsense. He seemed pleased with the attention though, so I continued to speak with him, make eye contact, and to sing to him. He smiled and laughed. After about twenty minutes Manny was getting drowsy so I said goodbye and thanked him for sharing his smile with me. Then, clear as could be, he said, “Why the hell not?” As though it was no brainer to spend time with a thirty-something woman willing to hold his hand.

There are so many priceless stories I could share with you. Like the afternoon I led a quartet of elderly women in a rousing and ear-piercingly off-key rendition of Happy Birthday as they batted a balloon wheelchair to wheelchair. Or the time Dorothy, who is rarely able to finish a sentence before she loses her thought, looked at me and said, “I love you. I’d like to adopt you as my son or daughter.” Or the beautiful moments when I’ve discovered the song that unfurls the poignant memories within someone who hasn’t spoken in months and they begin to sing along.

Such beautiful people are all around us. They are in the senior centers we drive past every day on our way to work, in our neighbors in-law suite, in the pews of our churches, volunteering in our polling places and libraries and schools. The elderly are all around us. They have so much love and perspective and history to share with us. They need our time and care. They deserve our respect. But so many of us do not see them. When we pass them in the grocery story we see their wrinkles, their shuffling gait, their canes and walkers, their mismatched clothes and their comb-overs and tight perms. We look but do not see the WWII Veteran, the hardworking farmer who stocked his community’s shelves, the pilot of the first commercial jumbo jet, the social worker who found respite for the homeless in her city. Unfortunately, our response to the growing mass of elderly in America is to put them in facilities with other elderly and think our responsibility fulfilled. Put them in a place and forget them seems to be our unspoken motto. So much is our loss.

My own grandparents, both eighty-six, are a delight to me and a regular reminder of my purpose and place in the world. More than once I’ve been talking to them on the phone only to have them interrupt and say, “Well, that’s great honey, but we’ve got to go. We’ve got to go visit our elderly. Love you. Bye!”

Touché, grandma and grandpa. Thank you for teaching me about who is important.

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Grandma Ford and I take a break from a walk in her local park in 2007.

Doctor of Goodwill

Woman: (laying in bed, looking at a man passing the doorway to her room) Who was that?
Chaplain: That is your doctor. He’s going to come visit you to see how you are doing.
Woman: Oh, another doctor!
Chaplain: You haven’t seen a doctor already this morning, have you?
Woman: I mean you, dear.
Chaplain: (chuckling with a smile) I’m not a doctor.
Woman: Yes, you are!
Chaplain: (Thinking she’s getting confused. She has Alzheimer’s.) Oh, really? Well, what kind of doctor am I?
Woman: (grasping my hand and smiling) You are the doctor of goodwill.

_________

People assume that being a hospice chaplain would be depressing; they are wrong. Everyday my patients inspire and encourage me.

Death is sad because it always involves loss, but death also has the potential to spark something good within us. The expertise of the dying is passing on life to another human being — this I am learning.

I receive and hold their spirit as a precious gift.