How to Suffer Pain in Public

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My fingers are pinched in binder clips. Not really. That’s just what it feels like. First, I imagined mouse traps, then binder clips came to mind. They seemed more elegant and more accurate.

I picked up three apples and glanced toward my cart. I had left it just beyond two large displays of produce. Now I would have to walk the distance to it, apples in hand.

I pulled the fruit close to my torso and braced myself for the short walk. I was always careful to hide my hobble.

My legs have been a problem since the first day of the infection and they are getting worse. I’ve been diagnosed with an “impaired gait” (along with several other more serious disorders.)

Ahead of me, I meet the gaze of an elderly fellow. A “codger,” if you will. When they say someone’s eyes twinkle, they must refer to the layer of sympathy and mirth that attends human kindness.

He wore a trucker’s cap. Tan, wrinkled skin. Gnarled knuckles around his cart handle. He pulled it closer to me as I staggered past.

“You look like you’re in a world of hurt,” he said with a smile.

“But I’m hiding it!”

Usually I offer overly chatty strangers a tight-lipped smile while turning away.

It’s the body language equivalent of “don’t talk to me.” This is my move in sickness and in health, but here I had blurted out my truth to a total stranger.

He laughed. The sound was like animated compassion.

“You ain’t doing a good job of hiding it, lady.”

I found myself laughing too. And I steadied myself on his cart to rest for a moment.

At home, I walk like a zombie, with a gait designed to avoid pain and remain upright. Falls are an issue.

In public, I choose not to avoid pain–instead not to show it. I’m slow, and a little rocky, like someone masking a limp.

On days like this one, it feels as though my femurs are loose in their hip sockets, and my right rotator is lined with tiny blades that scrape against bone with movement.

The binder clips are on my toe knuckles as well. And my knee caps burst with sharp stabs if they have to negotiate an unsteady step (which is most of the time—because I’ve also been diagnosed with “dizziness.”)

“Why are you walking along the wall?” my neurologist asks? “Just try to walk straight,” he advises as he examines my bizarre gait.

“Put down your arms.”

I explain that I’m trying not to fall.

My shins and thighs regularly feel as if they are covered in bruises. But my calf spasms jolt me awake at night. I’ll scream, waking my husband. And then clutch my legs. Mercy is when it hits just the right calf, not both, when the muscle zips back and forth beneath skin, hard as a rolling apple. And once the tyranny climbed up my spine, spasming back muscles in unison.

I told my doctors that this is the pain I cannot take. I was advised extra magnesium and to drink lots of water.

Another doctor suggests that my walk “doesn’t make any sense.”

The pain doctor glanced at the scrawls I made on the body chart they gave me. I had made dark marks on every limb, across my torso, my back, my neck, my head, my face. I had scribbled on the toes and fingers.

The doctor examined my chart and then looked up and smiled, “where does it hurt the most?”

I considered. It was hard to choose between my hands (typing sustains me,) the migraines (which were a matter for the ENT doc at this point) and the entire leg system (so necessary for basic living.)

“My legs,” I offered. Then again, I did a lot of sitting around.

“How are you coping?” he asked.

I told him about my friend in the grocery store, who caught me hiding and how he made me laugh.

He understood what it was like to perpetually ache.

I explained that it wasn’t exactly funny, . . . it was just that, what is there left to do after all, except have a laugh once in a while?

“It was funny-sad,” I said and then spent some time explaining that I was not suffering depression.

The pain doctor didn’t find my anecdote about laughter useful. I think he suspected I probably wasn’t hurting too badly after all.

Still, he prescribed medication. It amplified my pain instead of suppressing it.

Several doctors were baffled by my “paradoxical” reaction.

Then they gave me another medication. And it worked. By the second day, all the pain was a low murmur in the background of my life. After a week, I couldn’t stay awake during the day and behaved like a narcoleptic. Which is inconvenient. Ten days in, I no longer enjoyed the world. The pain flat-lined, but so did I.

I had barely enough brain power to remember my former self.

I became an actual zombie.

I told myself that I would rather have the pain.

I can take it.

Once I stopped that medication, the pain stayed at bay. I was ecstatic. I had “turned it off,” I happily explained to a friend.

And then it came back, stronger than before. Each digit clipped. Muscles on fire and abuzz, threatening spasm. Elbows and shoulders now a part of the party. My spine burning. My legs, as usual, bruised and broken disasters.

I spent a day in bed summoning the will to cope. Don’t get me wrong, I sometimes dance with despair and pity. Metaphorically, of course.

And then I got up and took a few steps. It felt as if my legs would crumble, bones and all. But they did not. And there is a list of other medications I will try.

I have a new doctor who vows to cure me. He says it with the same assurance as the doctors who urged me to accept my limitations. To forget about getting better and start thinking about living “as is.” My neurologist was gentle. I didn’t get the full force of his words until I was back in my car.

So I’m never getting better?

All because of a tick bite? Or the condition it triggered, as some of the doctors put it.

One time my husband poised above me when the pain was bad. He was trying to get me upright and off the bed without moving my lower back or hips. Just the impossible.

He’s a strong guy, but he dropped me and I wailed in spite of myself. Tears leapt to my eyes. And then I burst out laughing as the initial stabs subsided. They were so bright and unbearable, yet here I was, with him, bearing it.

My husband hovered over me in what would have been romance if I wasn’t totally immovable.

“So it’s come to this,” I giggled while crying.

“I’m so sorry,” he gasped and there was that eye twinkle I have grown to adore.

My pain has ways of hurting those beyond me. And I’m not as stoic as I may seem. I’m completely vain, despising my cane instead of appreciating it.

One of the things my husband especially loved about me was the way that I used to walk. He was prone to make mention of the grace in my shadow. His moved up and down while mine would float, head high and shoulders smooth, as if I glided on wheels.

Some days my legs completely give out, and my husband is my crutch.

“And you loved the way I used to walk,” I’ll lament with some drama.

“I still love it, baby,” he’ll say like a flirt.

He’ll smirk and I’ll do the cry-laugh because we haven’t lost all that much when it comes right down to it.

It’s almost funny, when you think about it.

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11 Comments:

  1. Pattie says:
    Your comment is awaiting moderation.

    Molly I am broken hearted to read of all the un-bearable pain you suffer. I always PRAY for your complete healing, for the Lyme to be gone forever never to return. I will now pray day & night for the suffering to go away. Be healed from all suffering in the name of Our Lord Jesus Christ Molly✝❤️ If you need any help we can drive back there & clean your entire house spotless. Cook all your favorite meals to freeze. Totally willing & eager to help in any way possible! I am so Proud of you & your Brave positive inspiring soul. 👼 May God Bless you with a Miracle healing🙏🏻 Love Forever❤️

  2. David Hansen says:

    Thank you for sharing this part of your life with all of “us”. I don’thave words to adequately express what I’m feeling right now, so I will just say that my heart is with you.
    Dave

  3. Alisa Bair says:

    A heartbreaking treatise on pain – and on love. I had no idea, Molly. Your life and writing touch me so very deeply. What an important voice you are. That it comes at such a high cost is hard for me to accept. Prayers for you and yours, and I’m with that doctor who vows to cure you!

  4. Cheryl Russell says:

    You are living proof Molly to never judge a book by its cover, or in your case, by all the fabulous words you make magically dance on paper. Your courage to share this hard-to-read post gift wrapped in humor and reflection is a testament to YOU–a most precious human being. May the answers lie somewhere and be revealed quick, fast and in a hurry. Blessings as you travel this path. I am cheering you on!

  5. Lauren says:

    ❤️❤️❤️❤️ I have a neurological condition called RSD. Thank you for sharing insight into your world. Sending prayers and love.

    Lauren

    http://WWW.TheZenFashionista.Com

  6. Elle says:

    having GAD causes alot of freaking out inside my own head and putting a brave face to get through the day. Its miserable for sure. I loved this post 🙂

  7. brianna george says:

    Molly,
    My heart breaks for the pain you endure. My friend also has Lyme (I am assuming that is what you have) and she writes at http://chronicallywhole.com. You may find her sharings an inspiration to you. ((hugs)) I pray for rest and comfort for you today.

  8. Brittany says:

    Thank you for being brave enough to share this story with us.

  9. Tamuria says:

    This made me smile and cry all at once. My mother suffers constant chronic pain and has to choose between sleeping her days away in severe pain or being awake and aware in almost unbearable pain. Like you, she is surrounded by great love which she says is the one big thing that helps.It’s great that you shared this to help other people understand.


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