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Monday, June 25, 2018

So this is life with chronic pain.

A little over a year ago, I experienced the onset of chronic pain. I'm not yet forty years old, and here I am with the feet of an eighty-year-old. It’s no fun, but with all the time I've had to spend sitting, I have had some time to think. I want to share some of my thoughts about chronic pain and the people who suffer from it.
1.       People with chronic pain are NOT junkies looking for a fix.
The opioid crisis is a tragedy, but there are many ways to end up hooked on pain pills. However, not all chronic pain sufferers use these meds. Not all types of pain respond to opioid pain medications. Mine doesn’t. Many of us try to alleviate the pain without medication: chiropractic care, physical therapy, massage, exercise, diet, vitamins, surgery, even hypnotism. My pain issue affects my feet. I take vitamin shots. I do yoga and stretches. I drink water and avoid caffeine. I rest my feet as much as I can. I sleep with my feet in a ridiculous contraption. I wear silly, ugly shoes with orthotics in them. And because I must, I take my non-narcotic medication.
2.       Chronic pain is NOT all in the head.
Not all pain is well researched or well understood, but that does not make it any less real. Doctors cannot always find the cause of pain. They cannot always cure the pain even if they do find a cause. My pain is currently considered idiopathic, which is medical-ese for “We don’t know why you have this problem; it is probably inherited.”
3.       People with chronic pain are NOT wimps or whiners.
Actually, they’re kind of like silent champs. People with chronic pain hurt just about all the time, but many of them will not tell you so. People ask me how I am, and I usually say I’m good. In my case, “I’m good” means that the pain is manageable enough that I can paste a smile on and try not to limp or hobble. I know that constantly telling you I’m in pain would bother you. I don’t like mentioning it.  However, I cannot do many of the things I love, which makes me sad. (Interestingly, there is a strong correlation between chronic pain and depression.)
4.       People with chronic pain are NOT lazy.
I plan my activities very carefully in order to get through the day with the least amount of pain possible. The goal is to make it through the day without crying or snapping at anyone. See Wikipedia’s Spoon Theory article. Walking is difficult for me. If I need to grocery shop, I have to say no to joining my friend for a walk. After a full day of work, I can’t really do much in the evening. I can only clean one room in a day. I skip non-essential events where I would have to be on my feet for a long time. Fairs and public events are a no-go because of all the standing/walking time. Hiking used to be one of my favorite things to do, and it grieves me that I cannot do it anymore. There is SO much that I want to do, but I cannot do it because of the physical pain it would cause. I won’t lie. Living this way takes away a lot of my energy.
5.       Chronic pain is NOT ALWAYS curable.
Chronic pain is often the result of injury, chemotherapy, heredity, or disease. Much of the time, this pain is only manageable, not curable. Treatment may ease the pain some, but it never eradicates the problem for good. My issue is likely hereditary. My meds currently dial down the pain so I can fake my way down the hallway with a smile on my face.
6.       People with chronic pain usually miss their old lives.
We do. There is an entire grieving process that goes along with losing the ability to enjoy a pain-free day. At first, we deny the problem. I suffered for months before seeing a doctor because I didn’t want to be taken for a hypochondriac. The day I found out what my problem was, I was so upset, I walked three miles homeward on my sore feet, alternating between sobbing and feeling numb. Second, bargaining. “If I lose weight, will this go away?” “I think I need a second opinion.” You get it. Third, anger. I remember one morning in the shower when I whisper-screamed into the void (so as not to wake the family), growled at God, and slapped the wall. Fourth, despair. Having to say goodbye to all of the things I used to love to do. (Even if I only have to say goodbye until we can get the pain under control.) Grieving the loss of hikes in the mountains, the 5K I wanted to walk, Christmas shopping in comfort, dancing, teaching my little guy to ride his bike, standing in the front row at concerts, wearing cute shoes. The fifth stage is accepting that this is just how it is, learning to create a life that you can still live while dealing with all the awfulness of your pain. I haven’t really reached this stage yet. I’ll let you know what it’s like when I get there.

Tuesday, February 20, 2018

Joy moments and a memorial hike

Dear Beloved Friend Who Just Passed Away,

Saturday was your memorial service. I didn't get to go because I live so far away, but I think that's okay. I remembered you. I wore spring-bright clothes all day like you asked us to do. My family and I (parents-in-law, too!) took a snowy hike somewhere none of us has ever been to before. We brought our dog and discovered she's an excellent hiking dog. My children gravitated toward a tiny, frozen-over pond where they spun around and posed for pictures. I photographed my parents-in-law on a little wooden bridge that passed over an overflowed, frozen stream. The woods were still, and the winter had left treasures encased in ice, tiny pine cones and leaves frozen to the trail. Rocks, wintered-over scrub, tree stumps, and sticks peeked out of the snow. The sticks became swords for my little one. A brook trickled beneath a sheet of ice that bore holes as evidence to a recent and recently-reversed thaw. I stopped often and looked up to where the sun glowed just behind the clouds, a faint, yellowish ball of something hopeful and expectant illuminating the winter sky.

I missed you, of course. I was sad, but not entirely. I was doing exactly what you would want me to be doing. I was remembering you, enjoying love, finding beauty, and treasuring "joy moments" like those you were careful to note in your own life.

My joy moments became a sort of memorial to you, friend, and I think you would have been pleased.

Tuesday, February 13, 2018

When your friend dies

Two days before: Your friend writes that she is feeling afraid. You live across the country and wish you could be there. You write back to her, telling her she is not alone because you know she is not. Her family and friends are right there. They probably don't all fit in the hospital room. She is so tired of hospital rooms. The doctor put her back in the hospital, though she had just gotten out. Complications from cancer are no joking matter, though. She dons the gown; you try not to think about how the nasal cannula she wears makes you think of Hazel from The Fault in Our Stars. You don't want to think about that because you know what will eventually happen to Hazel...and your friend. 

One day before: Check Facebook incessantly. She's the only reason you even went back to Facebook after a 40-day hiatus. You wanted to make sure she is still alive. She posted something. You feel relieved. She is also the reason you cut of your hair last summer. You wanted to do something to help her, but you couldn't. So you cut off your hair to give to other people who lost theirs because of cancer treatments.

The day of: Another old friend throws a communication hail-mary and finds that you still have the same phone number you did five years ago. She lets you know that your friend is dying today and won't last the night. Thank her. Chat nicely for a bit. Then sob your brains out when you lie down to sleep. Try to keep it down so your teenager in the next room doesn't worry. Regret moving so far away because now you can't get back for your friend's funeral. Pray for her, that she doesn't feel fear. Too late to pray for healing, unless death is considered final healing, in which case, bring it on. Pray for her children, who are in their early 20s and really need their mom around to help them navigate into adulthood. Thank God for their grandparents, who are there for them. Remember how awe-inspiringly crazy you thought it was at first that she went to Romania to adopt these two girls, to become a young, single mother of two girls who did not speak a word of English and had been raised in one of those awful orphanages you read about. It was crazy. But good crazy. The kind of crazy that saved the lives of two little girls, the kind of crazy that changed your friend's life, your community's life, all for the better. The kind of crazy you neither forget nor regret.

The day after: Eat nothing but ice cream for meals. Remember the last time you saw your friend. She came out to stay with you for a few days last fall. She felt so sick, but she pushed through and visited the most popular lighthouse, a famous poet's house, that restaurant that she remembered from a Food Network show. You spent the last night of her visit lounging in front of Netflix, watching Very British Problems. Feel no regret because you had a chance to hug her, to tell her face-to-face that you loved her. Love her. She's dead, but love isn't.

Still the day after (it is a very long day):  Sit in your car at the shore and stare at the ocean for a while. Watch the waves smash themselves against the rocks. Your homework is piling up. It's smashing against your brain like the waves smash against the rocks. Let it wash over you. Eat more ice cream. And maybe some hot cocoa, too. Remember that your friend's last visit was a kind of bucket list trip. Pull out your journal and make your own bucket list. Realize that you have already achieved some of the things that were on your bucket list. Feel small relief from that satisfaction. You've gone down into the Grand Canyon. You've had a book published. You're working on your Master's degree. (Ignore your homework today. Your Master's can wait a day.)

Still the day after (a reeeeally long day): After work, husband notices you are silently on the edge, and he walks you. He takes you along on a Pokemon Go excursion. He walks you around downtown. It's cold, but you don't really feel it. You find a store you've never been to and buy stuff you wanted but could really live without because why not? Your stomach hurts from your diet choices. Skip dinner. Forget to make dinner for your family. Well, you didn't exactly forget. You were aware of the time but somehow, you just couldn't bring yourself to bother. Cereal and eggs is dinner, right? Husband happily gets dinner for himself and the kids. Remember that time your friend taught you to swing dance in class during college. Remember that she was your journalism professor first, and she could have gotten in trouble for dancing in the computer lab. Realize that so much time had passed, you forgot she was your teacher. She was only a few years older than you.

The next day: Husband walks you again. More Pokemon hunting. Freezing rain and snow fall from the sky. Your walk is shortened. You shop. You clean. You do anything but sit still. You feel antsy, caged. Your husband is awesome. He cooks or gets pizza. You can't remember which. Did you eat?

A day or two later (time starts to feel blurry--what day is it?): Snowstorm. Busy yourself preparing for it. It hits midday, and you busy yourself with schoolwork and kids and cooking. Cooking makes you happy. Cook, cook, cook. Video games. Floor mopping. Snow shoveling. You shovel and shovel, and your body is too tired for your mind to feel sad.

Days after: Back to work. Say nothing to anyone about what has happened. People come and go and live out their own dramas, tragedies, and comedies before your eyes. Marvel at the fact that, although your world is forever changed by your friend's death, no one else's seems to be. At least not here. Because a Little Bug Went Ka-choo was a lie. But you are changed for having known her. Changed for the better.

Some more days later: Keep checking your friend's Facebook page for updates out of habit. And because sometimes you just want to look at a photo of her. Regret that you didn't take any pictures while she was out. Try to find a word for what you feel. You are not despairing. You are.... numb? Feeling like a ghost wandering around your own life? No, this is grief. Grief is different for different people. You are grieving. 

And still later: Funeral details are posted. She insisted that nobody wear black to her funeral. You are going to wear the brightest, gaudiest clothes you can on that day, even though you will not be able to get to her funeral. Even if you have to dress like Mrs. Whatsit, you are going to dress like a freaking rainbow because she doesn't want you to mourn her like your teenage-goth-style heart would like to do. She wants you to remember happy things about her. You have lots of happy things to remember.

More days later: Consider unfriending your friend on Facebook because it's weird to see her come up in your feed with new posts after she has died... but then decide against it, because eventually there won't be any more posts, and you will still want to go back and look at photos. Maybe you'll even print some out. But for now, leave Facebook alone for a bit. Download a word game on your phone to occupy yourself for a while. Do some gourmet cooking. Sometimes forget to make meals, too. It's kind of a toss-up how you'll feel about food. The family rolls with it because they like pizza, pizza rolls, soft pretzels, and other things you normally wouldn't make for dinner.

Today: Finally feel ready to talk about it. Cry while you write a blog entry. And then decide to enjoy her memory. Remember that she is the reason you know how to do the guy's part in swing dance, since she was your partner at the last swing dance event you went to. Smile because you met during one of the best times of your life, and she ended up being one of those awesome friends who stuck around. Turn on Bob Dylan because you can't really cry to 90s Bob Dylan. Then put your nose to the grindstone and get stuff done.

Sunday, March 22, 2015

Following my child's example

I have a two and a half-year-old son, A. He's exactly what you'd imagine a two and a half-year-old to be, and then some. Possessing no off switch, this child is in constant motion from the moment he wakes up in the morning until his head hits the pillow to sleep. The bruises on his legs show that he's a little daredevil who jumps and runs and falls and then gets up to do it all again. The scratches on his arms show that he is still learning how to be gentle with our cat. The grin on his face shows that he is loved, accepted, and happy.

But A possesses something else that makes me sit up, take notice, and even take notes. This child knows how to gently and wordlessly console others.

Two weeks ago, our little family was visiting a couple from church. The wife was dying, and the husband was beside himself with grief and dread. At one point, the gentleman and I were sitting on the couch together. A walked up to him and looked thoughtfully into his face for a while. Then he stepped forward, picked up the man's hand, and kissed it. The man looked up in surprise, unable to keep from grinning through his tears.

This morning, as A entered his Sunday school class, he stopped short when he saw another little boy curled up in the big easy chair with his parka on and face hidden. This little boy has cancer. The aggressive treatments and the cancer make him feel sick, tired, and weak.

A stood there for a bit with that same thoughtful look on his face. He took a tentative step forward, looked at me to see if it was alright (it was), and then walked up to him with his arms outstretched. He wrapped those little arms around the suffering child and gave him a kiss.

See, when A falls, gets hurt, or is upset, he runs to his Mama (and Daddy, and Brother) for a kiss. I can't make the bruises or scratches go away, but I can reassure him that I care. A kiss makes him feel better and lets him know he is loved. So when A sees someone else suffering, his first response is to show affection, to try to kiss it all better.

There is a lot of suffering and grief going on in this world, in my town, even in my church. I would do well to follow A's example. I can't fix it all, however desperately I want to do so. Many times, all I can do is let the sick and grieving know that I care. I can make myself vulnerable enough to show empathy, I can be there, and I can offer kindness whenever possible.

And even a kiss, when it's appropriate.

(I confess to sneaking a kiss of my own onto the sick little boy's head, as well.)

Saturday, January 10, 2015

More Bounce to the Ounce

On Friday, I was subjected to fat shaming for the very first time.

I was sitting at a stoplight eating a snack. I happened to look out the window and see that the driver of the car next to mine had his face up to his window, gesturing wildly at me. Was my car on fire? Was I on fire? I peered at him, trying to understand what he was telling me.

More bounce to the ounce... saw this today and had to smile.
The man, who was at least 20 years my senior, was mocking me, imitating me eating and making-- of all things-- PIG faces at me. He was snorting and laughing and having a good old time as I sat there wondering how on earth to respond. My girlfriends on facebook had colorful and humorous suggestions for me when I told them about it, of course. What I actually did was make prolonged eye contact, and with a pleasant expression, take a humongous bite and chew, still staring, until the light turned green and it was my turn to go. I can sass without having to be unkind.

I'll be up front and tell you I'm currently a size 16. It's not like you can't tell by looking at me. I'm also no stranger to public humiliation, bullying, and such, both during childhood and adulthood. I have learned to let most comments roll off my back. Part of being me is being weird and therefore prone to scrutiny and negativity. But as I got to my destination, what I  felt was shock. I had never been treated that way by someone else because of my weight. I had never expected those words to come from a stranger, a man, a strange man who looked like he did. He was no Adonis himself.

But what shocked me most of all was that I believed him. 

For just a short while, I believed that I was ugly, laughable, and dumpy. I did not have a right to take up as much space as I do. I did not have a right to eat. I was a big-butt, pot-bellied old fatty who should just put a bag over her head. Snort, snort.

And why did I believe this guy? Because I have said or thought these things about myself. The guy in the pickup truck was like a wireless speaker broadcasting my inner voice. Many of you have no idea the nicknames I have for myself in private. I crack jokes about being like Aunt Fanny from the movie Robots, not quite aware of how large my derriere is until I knock something over. I laugh about it, even though secretly I don't like it at all. I recently knocked a bunch of stuff off someone's desk at work by miscalculating the space I had as I turned around.

Anne Lamott talks about how writers have inner critics who stand over their shoulders and say nasty things about their writing. I have managed to silence my inner critics on the writing thing. Instead, they whisper behind me as I get dressed, cackle as I wriggle, squeeze, and button, and say all sorts of nasty things to me whenever I look into a mirror.

Maybe this is why I have only managed to lose 10 lbs. in the past year. No matter how hard I try, those voices tell me it's pointless, that I'm not going to slim down because I'm a lazy loser. Sometimes I manage to ignore them long enough to eat like a saint and shed a few pounds. Other times, I turn to dark chocolate, which makes me feel all better for a few minutes, making me drunk on sugar just long enough to distract me until I have to go off and do something else.

I don't come across as being very vain, but my mental dialogue about my weight is steeped in vanity. I should not be ashamed of my weight; I should be ashamed of being so vain. Even though I don't adorn myself in an excessive way (or at all, really), I have become overly concerned with my appearance. I beat myself up for not measuring up to some unrealistic ideal I hold in my mind and allow others to make me feel bad, as well.

I don't want to stay a size 16. I want to fit all the cute, funky things I find at the thrift store. But I also I want to do all I can to take care of myself because heart disease and diabetes run in the family on both sides. Apparently, a mighty addiction to chocolate and a tendency toward emotional eating are also woven into my genetic tale. These are the reasons I need to slim down. I don't want to abandon my family and make an early departure for the other side because I let food rule me. My father died of a heart attack twenty years ago next Saturday, leaving behind a very lost teenage daughter (and 2 in their 20s). I certainly don't want to follow suit.

I am not quite sure how to balance what should matter to me with what really does. I'm hoping that just becoming aware of what I was doing to myself is a good place to start.

And for the record, I really am over the piggy-face-making fat-shamer. This isn't about him; it's about me.

Sunday, December 28, 2014

Some of my friends are made of paper

When you move somewhere new, you are likely to miss not just your friends, but other things about your old life in that other place. It may not be enough to make you want to go back, but still, you miss it. I miss having public transit, a zoo with spray ground and mini golf course, a thriving local music community, art galleries, two beautiful city parks connected by a footpath through the woods, and the beautiful melodies of Yoruba, French, and Hindi spoken all around me. I also miss the libraries.

For almost two years, I've lived in a small town with a limited library.* I rarely have a reason to go there unless it's too hot to take my children outside. As a result, I've taken to re-reading my sizable personal collection of books.

During these two years, my books have become old friends to me. Not "like" old friends. They've truly become old friends. Sad books with places to store my sorrow. Fantasy books to take me far away. Upbeat, witty comedies to make me laugh. Poetry to make me sigh and think and open my heart. Characters to dialogue with me, to give me their take on the world, to dream with me, to narrate my spiritual journey, to help me remember things that need remembering. It's all right there, crammed into bookshelves, boxes, temporary shelving in closets, anywhere I can fit a book or ten.

 I love the new book friends I've acquired, but it is usually my old friends who stay by my bedside and whisper to me as I sleep and don't yell at me if I only make it through a page or two before passing out at night. Figuratively, of course.

Do you have any old book friends you love to reread? Do tell me about them in the comments.

I'd like you to meet the old ink-on-paper friends who were my most notable companions in the past year:

  • Bright Evening Star by Madeleine L'Engle (I read this every Advent.)
  • Eat Pray Love by Elizabeth Gilbert (For times when I want to get away.)
  • Twilight, New Moon, Eclipse, and Breaking Dawn by Stephenie Meyer (Don't knock it. You eat McDonald's food, I read junk books.)
  • Books 1-5 of the Harry Potter series by J. K. Rowling (Favorite characters, a believable yet impossible world, and HOUSE ELVES. Yes, please.)
  • A Wrinkle in Time and A Swiftly Tilting Planet by Madeleine L'Engle (Hanging out with characters I've come to love.)
  • The Feather Room and Songs from Under the River by Anis Mojgani (Imagery to dream by.)
  • Grace (Eventually) by Anne Lamott (She can make me laugh and cry and accept myself all at once.) 
  • Marathon Miranda by Elizabeth Winthrop (I've read this so many times, it's falling apart.)
  • When One Has Lived a Long Time Alone by Galway Kinnell (A gift from an old friend; I reread it when I miss her.)
  • The Moon Is Down by John Steinbeck (A satire so hilarious, I read it aloud to my older son.)
  • On the Road and Pomes All Sizes by Jack Kerouac (I travel vicariously through this guy.)
  • Miracle on 10th Street by Madeleine L'Engle (Sweet Christmas readings.)
  • Lisey's Story by Stephen King (I find the main character very likable. Plus, she craves Hamburger Helper and Kool-aid all the time, just like I do.)

Yeesh, when I add all these in with the new books I've read, I've actually read quite a lot. I guess I do do something other than sit around refreshing Facebook to see if anyone posted anything new.
*I'm spoiled by having had access to two community libraries with books, games, music, movies, ebooks, thriving children's programming, adult programming, and interlibrary loan, as well as access to a state collegiate library system at two locations and a small private university library. That's a lot of access to a lot of awesome stuff. I haven't used the tiny small town library since July.

Tuesday, December 23, 2014

Waffles, a tale from my father's funeral

My father's wake was the most exhausting evening I have ever been through. Much of the time, my mom, my grandma, my sisters, and I were standing there greeting the flood of people--friends, strangers, relatives, and relatives so far removed they may as well have been strangers.  Sometimes the line was backed up all the way to the outer doors. Everyone had a story about the dear departed, and they wanted to hear our stories, too. They needed to cry and wanted to comfort us at the same time. To sixteen-year-old me, it felt like standing on the beach with the tide coming in, the waves of others' grief mixing with my own and threatening to drown me completely.

Cue my dear friends, K and G. they dropped by halfway through the wake to pay their respects. In the manner of true friends, they saw my distress and gave me a much needed escape from the flood, which was about shoulder depth at that point. They took me back into the funeral home's family-only break room and sat with me at the table, making fun of everything there, from the ashtrays to the institutional coffee to the paneling on the walls. I don't know which one of them started it, but they eventually started singing, teaching me the words to the WAFFLES song from MST3K.

Yes, it was nerdy. We were a loud. We were laughing at a wake. Overwhelming emotions can manifest themselves in uncontrollable and poorly-timed giggling fits. And then sometimes, we need laughter to bring us to the surface of our grief-sick oceans-we need to get some air.

I don't know how I would have survived that night without my friends and our ridiculous song.

Fast forward twenty years. My dear friend G is going through the roughest situation he has ever gone through. The stress and grief he's experiencing feel like too much for him to bear. He's drowning, and there's nothing I can really do to improve his situation, especially not from halfway across the country.

What I can do is this: I can listen to his story until he is done telling it, and I can go to the edge of his sad ocean and toss in a punch line or two for him to hold onto so he can surface and breathe for a moment. So I suggested that we start sharing the funny and/or ridiculous things we see during the day. Things we can laugh about because, as I told him in a text, "even on a bad day, people still run around Walmart with toilet paper hanging out of their pants."

I can't heal his hurts, as much as I would like to. But I can distract him a little, laugh with him, and maybe get him to sing the WAFFLES song with me.