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Pain and Illness - Not giving in

Updated on November 26, 2010

How long can I fight?

I could not sleep at all last night. I am trying to get things done on my to-do list.

Why do I feel the need to justify every minute in my day?

I’m on disability for a reason. I can’t do things like a normal person – I can’t keep up – and this pain is my body’s way of saying “Stop!” No, I’m not complaining. I’m not even talking to you really. I’m talking to me. I’m the one who won’t stop. I’m the one who refuses to accept it. I’m the one who won’t face my limitations. I take the ones I have to. But those last final ones, that might keep me down really – the ones at home – the pain meds that would make me sleep, the drugs that make me rest and stupid, the ones that take the “ME” away – THOSE are the ones I fight until the bitter end. Reminded me just now of that Dylan Thomas poem about “not going gently into that good night”…

Today I walked down the stairs, miscalculating; I missed the last step and almost fell on my face in the dark. I should know better. I stayed up all night trying to calculate in my head how many hours I had to sleep until I had to get up so I could get my body on a regular schedule. I didn’t have a calculator and I’m very bad at math.

I was in so much pain last night. I found no relief when I did get in bed. I was so cold. My blood would not circulate; my arms were numb, feet cold. I went down to the basement and outside after bundling up. I lit a cigarette and stood there staring out into the darkness. I just couldn’t stop the racing thoughts. I’m really glad I have this web page to write and share.

The Art of Labels

I was thinking about art. I love art in all of its beautiful forms. I never thought of myself as an artist. I thought of painters and sculptors. That’s how much I paid attention in grade school and remember from art class through high school. I don’t remember any college art classes.

It’s funny actually. I didn’t really know I was learning art when actually I was all about art. I always loved costumes and making things. I was always “crafty” but I never considered it “art”. But that was because I didn’t identify myself as an artist, I used other labels. Always the labels – like if you had a good one, you were safe. I wanted a good safe label. I wanted to prove I deserved my own good hard earned and stable label. To someone. Because it was going to make a difference. One day, to someone. Somewhere. Somehow. The details were sketchy but I knew the logic couldn’t be flawed, the label thing – now that was something everyone wanted one of, right?

I earned titles. I earned ranks and seniority. It wasn’t until I stopped thinking everything needed to have a label in order to mean something that I learned to integrate all the lost parts of myself. Then I began to see.

Music was art that grabbed me and took me into another world where I could be transformed into anyone, anywhere at any time. Music created that escape or a landscape for reality which enveloped a moment enhancing the experience and held me there.  And then there was dancing, and lighting, costumes, movement, masks, performance, choreography, inspiration – instruments! ART!. Then the painting – how many kinds? Watercolor, oil, blends, and what about sculpture? Pottery, Clay, Marble, Sandstone, Leather, Fiberglass, Aluminum, Titanium, Paper, Glass, Gold, Tin, Bronze, Silver, Bottle Caps… and then Fairy Dust!

I’ve seen so much art since I opened my eyes. I’ve gone back in time and spent many days at the Renaissance Festivals behind the scenes as a vendor’s helper and as a faire celebrant. I’ve watched the demonstrations and listened to the discussions. I’ve watched the crowds and how some appreciate the work and time that goes into each piece, and I wonder – does it get mundane for the artist when it becomes your means to a living or do you still feel the magic and wonder in a new piece or creation. Do you still have that sometimes? I would never want to lose that.

Suddenly the door opened behind me. I spun, or tried to – it ended up being some quirky combination of three steps that left me standing quite awkwardly facing my mother at 4:45 AM saying “Whoa! Easy! You’re still up? I made the mistake of leaving your bedroom light on and I looked and noticed you still weren’t in bed.”

“I came out to have a cigarette and clear my head. I took my meds. I should be getting sleepy already. I’ve been writing all night. I just can’t stop. And it’s funny, because I have nothing to say.” She must be freezing, but she isn’t awake enough to process it. That woman is a rock of strength.  “I’ll be in Mom, and then I’m going to bed. Really. Don’t worry.”

“I’m up early; I think I’ll start the laundry before I go to work. Then I don’t have to do it later. I’ll see you inside. It’s cold.” She shut the door.  A rock. I don’t know how she does it. She takes care of everyone. I could write a whole book on my mom…but, let’s just say she’s earned her wings and she’s my best friend.  Speaking of art, they don’t make them like that anymore.

Its evening now and today was a blur for me. I got two or so hours of sleep in the lazy boy downstairs. There was some family drama with a phone call. Every family must have an on-going thirty-year War of Roses and Thorns that turns into a contest of loyalty among clans who no longer remember why they are fighting. Otherwise what fun would it be to only see your relatives on Christmas or any religious or non-secular holiday celebrated on or around the Winter Solstice? I don’t know how to refer to any day of the year anymore.

You know how there is one person in the world who can get in to you, knows how to breach that wall of confidence and then turn all of the right buttons to turn you back into a ridiculous, spiteful, mean, paranoid, self-conscious, vicious twelve year-old? I thought today that everyone must meet at least one person in their lives that makes them revert back to that. They are siblings or are married. Or divorced… One person has to break the cycle and just grow up.

Instead, if you feed on it, play the blame game, and always wait for your turn to expose them or try to make them change instead of working on you – it just continues on. If neither of them will stop and you are outside of the little destructive circle – run. Or you become fuel in the manipulation fire.

I learned something else…My mom…well – she is the baby sister. Yep, that stuff even matters when you are a Grandmom. She takes care of everyone. She never complains – she just does it. Now don’t get the idea that I don’t see my mom as a real person. She is three dimensional – a real woman who has fun, laughs, cries and lives life with a vengeance sometimes because if she doesn’t, she doesn’t want to be the one to blame anyone else for what she missed. She is a real woman who trips, falls, walks, runs, dances and will carry you along with her if you can’t walk through life.

Okay, my wrists are raw and my fingers are throbbing from writing on this laptop. I have got to get away from this screen for a few hours. And I need to sleep tonight. Mom wants to go shopping tomorrow. My shelf life isn’t long, so I need to plan my route carefully. I hardly ever go shopping. I get too distracted by shiny stuff - that’s what my boyfriend says. It’s the meds.

We laugh. I say I’m taking in the moment. He just doesn’t see what can be so enlightening about spending an hour and a half in the local grocery store.  Honestly, I don’t either but I have to come up with something by the time I get home. 


Still a long way to go...
Still a long way to go...


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    • Erin LeFey profile imageAUTHOR

      Erin LeFey 

      8 years ago from Maryland

      Rich, thanks for stopping by this hub and reading these crazy thoughts of mine. Its a wonder I don't have more of these hubs really. Probably because I don't publish unless I edit and re-edit anymore. This one was written before my last surgery when I needed more meds and had many more nights of sleeplessness and pain. I'm thankfully on a more regular schedule and have come to terms with the results of my spinal cord injury.

      Pain is a funny thing and I think I need to write a new hub on it...sleeping is something I won't ever take for granted. I've got a whole new team of doctors that are really great and I'm doing a much better job of taking hold of my life.

      Thank the stars for creative minds that keep us occupied when we can't read!

      Thanks again for coming by and I enjoy your hubs as well!

    • richtwf profile image


      8 years ago

      I can only imagine what it can be like to experience pain at night and not being able to sleep. I've had short periods in my life when I've been unable to sleep at night for whatever reason and that was an uncomfortable feeling - tossing and turning. I've also had times in the past where I've come down with a fever and can remember the sleepless nights that I had.

      I think all of us have a creative side which may be apparent to some of us but unfortunately in others still remains undiscovered or has been suppressed. I've only recently discovered my creativity through writing but I'm glad I have - better late than never!

      Thanks for sharing these thoughts.

      God bless and peace to you.


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