Facing Reality

Today I'll be spending a chunk of the day with Dr. Painless.  You remember Dr. Painless, right?  He's the one who gave me my bionic arm.

I have to tell you up front, Dr. Painless is a nice guy.  He really is.

Also?

I dread every time I have to see him.

It isn't him, of course, it's me.

I spend most of my time, particularly when I'm around other people, acting as if everything is just fine.  

Yes, I still wake up regularly from nightmares of screeching tires and metal screaming.

Yes, I live with severe chronic pain.  

Yes, I lost the use of my dominant arm.  

Yes, I'm filled with metal and wires and electrodes –

But isn't life grand, anyway?

Also, hey look –

I took a pretty picture with only one fully functioning arm!

I may have to slip away to my hotel room at a conference for an hour or two when no one is looking though.  If you find me I'll likely be in my room, doubled over on the floor in pain with tears streaming down my face …

But you'll never see that.

You might read a tweet saying, "Bad pain flare up," to explain my absence though.

You might see another tweet saying, "Extra pain meds tonight – whee!"

But, in fact …

There's no "whee" to it.

Pain is an awful, ugly, living, demon, creature - that's the truth of it.  It will strangle the life out of you if you don't fight against it with everything you've got.  

And oh, the energy just to fight it. 

Sometimes, I just want to give up because it's so exhausting to fight this battle every moment of every day.

When I'm with Dr. Painless, it's Reality Time.

There's no bullshitting, there's no pulling punches, there's no denial.

(I've become such an expert at denial ….)

When I'm with Dr. Painless, he's very open and blunt about reality.

Conversations with him always surprise me like a sharp slap in the face.

No more pretending, 

Just full, out-right acknowledgment, this sucks.

It has sucked for five years and it is always going to suck.

Is there any way we can make it suck a little less?

Dr. Painless learned quickly not to soften the harshness of reality with me.  I suppose that's the most effective way of dealing with someone as stubborn as I am.

"Have you been able to get any fucking sleep?" he'll ask, staring deep into my eyes.

He's the only one who sees the truth.

He looks in my eyes and he stares into pools of despair.

He sees them, recognizes them, and appraises their depth.

For others, I hide the despair.  I put on an act.

Aren't I strong?

Aren't I brave?

I can do anything ….

And, I'm trying very hard to live just that.

But with Dr. Painless there's reality.

The reality of pain interfering with sleep, and pain interfering with life.  

The reality of a disability frustrating me and holding me back, even as I tell everyone I won't let it hold me back.

Sometimes, facing reality when I'm with Dr. Painless is too much.  

I've sobbed, uncontrollably, on him before.  Yes, I've done "the ugly cry" with mascara and snot running off my face onto his shirt.

I think, if I were him, I would have freaked the hell out.

Instead he just hugged me until I stopped crying and said, "This is part of it."

It

It is severe chronic pain.

It is permanent disability.

It is reality –

The reality "my situation" is forever

How can that be?

I'm dreading seeing Dr. Painless today,

Seeing him, means facing the truth.

© Twenty Four At Heart

31 Responses to “Facing Reality”

  1. Tara Bradford

    It can’t be easy to live with such pain; my hat’s off to you for plowing through the pain and making the most of your life.

  2. Alexandra

    I am so sorry…I can’t imagine what it’s like to always have this in the front of your thoughts.

  3. Julia Andriessen

    Fucking blows! Hope the day went as best as it could. Pain numbs everything…but the pain. <-- think I need to write my own blog post about that! thanks for the painful inspiration!

  4. Michelle

    “Seeing him, means facing the truth.” Yes, it does. But it is also a safe place, with someone who understands what you are going through, and how you are fighting, and winning, and allows you to let it all out so that you can face the world again with your ‘mask’ (in a good way) back in place with less emotion trying to push it out of the way.
    Keep fighting. Keep laughing. Keep taking amazing photos. And keep facing the truth with Dr Painless. Because he does understand and care.
    Love you.

  5. unmitigated me

    Does he work with a PTSD counselor? Because a good one can help with those nightmares. You know I know what I’m talkin’ about here. Hit that pain from ALL sides at once. I used to think
    nk of it like a science experiment: how will I know what worked if I try everything all at once? But there is no control group. Each little bit the pain is reduced by massage, by meds, by therapy, by wires and electrodes, they all add up.
    Keep hoping, 24. It will never go away, but it can KEEP getting a little better.

  6. Di

    Love you. Don’t smile for us… don’t pretend… if it hurts like hell just say so. Most of us have read your blog long enough to know what you have been through even if we haven’t experience the actual pain. Don’t smile for us if you don’t feel like it.

  7. Jenny in MN now AZ

    Powerful post. Brought me to tears. My heart hurts for you and it brings my reality into focus too. Best of luck for your appointment today.
    Living a day without pretending you are okay… what a concept.
    Hugs!

  8. Rachael

    Denial can be an awesome tool. I mean, you can’t go around all ‘woe is me’ every minute of every day! That’s just so boring. Too bad it can’t be used on the pain itself. *That*, would be awesome!
    I hope today is a good day for you. Hugs Suzanne!

  9. Pam

    Thank God he understands and doesn’t just BS his way through your appointment and on to the next one. I imagine it is painful to get emotional about it, but you need to let it out! That said, I’m sorry you’re going through all of this!!
    Take care,
    Pam

  10. karen

    Thinking of you, hoping you found some relief with Dr. Painless. Sometimes the full out snot-inducing mascara smudged cry is the only thing that bring a little relief. Sometimes that really is the only answer.
    Dealing with a forever handicap, especially a pain inducing one, is so utterly debilitating, mentally as well as physically. I do know where you’re coming from. It sucks, but it’s all we have, so no choice but to soldier on, which is absolutely exhausting, you’re right.

  11. Nancy P

    I got goosebumps reading this. I am so so very sorry that you have to deal with this bullshit every freakin day. I am going to keep you in my prayers and pray like hell for a pain relief breakthrough to be found.
    Big big hugs to you Suzanne.

  12. Karen in East Texas

    Denial of our pain is not always bad Suzanne; but we do need to let others have a glimpse into our reality sometimes. Otherwise how are they to possibly understand a little what we are enduring.
    Your post really hit home for me today. I’m a fully functioning pain denial master. I’m trying to change, to let people see that sometimes I do need help … to ask for help.
    A few months ago, I had that pivotal moment of realization that I am disabled, that I can not do everything myself, that I can not keep a perfect house or be a perfect parent.
    This is difficult to admit, but at first I felt weak, ashamed and like I had let everyone (including myself) down. After a long talk with my Dad, I feel better. I feel like I can start letting these people who love me in … into the reality of my life.
    Suzanne you are a remarkable person. Keep up the fight.

  13. missmolly

    Ugh!!! So sorry for what you have to endure every day.

  14. donna

    Don’t even have a comforting message that means anything and I’m a nurse!! We should KNOW the right thing to say, huh? Just feel for you…what an awful situation. So sorry you are having to go through this.

  15. Cathy B

    Suzanne, I’m so sorry you have to go through this. And even though seeing Dr. Painless brings you up against your reality, at least you have a doctor who knows what that means.
    Sending you all the positive thoughts I can…

  16. Nike

    I hope your day was okay… thinking about you and can not wait to see you soon! Balloon ride anyone? love ya

  17. Emsxiety

    I’ve been watching this from the outside with my husband. It’s 12 years now. 12 years of Chronic Pain and disability. We are brutally honest about it with each other. Most of the time we use humor but sometimes, you just need to cry and let it all out, stop being brave, stop putting up a good front and allow yourself to say, ” This fucking sucks!”
    I am thankful you have an amazing doctor. He’s one in a million. Hugs to you today and every day!

  18. Sandra

    Clearly one person beside you can understand, even if he doesn’t live it like you do.

  19. Sandra

    Clearly one person beside you can understand, even if he doesn’t live it like you do.

  20. Maura

    You know, I was in awe of you at BlogHer, marvelling at how you handled what I knew had to be incredible pain. Now I know that it’s even harder for you than I realized.
    I admire your tenacity in the face of so much difficulty. (((hugs)))

  21. Sandi

    I’m so glad that you have Dr Painless to talk to. I can’t even begin to imagine what you have to live with, but this post gives us a more intimate look. Thank you. I hope he can make it suck a little less.

  22. Len Wilcox

    Wow. Such honesty is so rare. I have lived with Rheumatoid Arthritis for the last 20 years. It is chronic pain, sometimes severe, sometimes moderate, never gone. I seldom can talk about it. I doubt I could ever be as real and honest as you are in this posting. Thanks for sharing and expressing how it really feels.

  23. Crystal

    My mom feels the same way about her Dr too! all the meds and issues she has with her back and legs is enough to send her hiding in her bed!! She adores her Dr though, but wishes she saw her under better circumstances!

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