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On chronic pain and motorcycles

You see my brace and feel bad for me. You see my scars and wince. You see my little-stick-leg and wonder how it holds up a body so big. I'm tall. I'm built. I'm handsome and smart and charming. I go to school. I hardly limp. I talk to you and play my ukelele, keep up in my classes. I shine. I outshine you all and you don't even mind, because I help you understand things you've been having trouble with, and I do it with a smile. I've made mistakes some will not let me forget; others marvel at my strength.

No one knows my reality.

No one knows what every step costs me, that I start each day on the blade of a knife. Despite my smile, my songs, my help, my scars should tell the story of the damage underneath. Behind every scar, more physical or emotional pain than you'll ever feel in your life, I hope. My little stick-leg isn't just muscle that's been left to atrophy; it's muscle that will never build up again, because the nerves that make them fire are dead. And though they're dead, they cause such pain. Burning. Itching. Imagine it. Imagine having the worst itch of your life and being unable to scratch it. Now imagine it on fire and not a thing on earth can put it out. No one knows what I have to do every day to keep that fiery itch at bay. I'm twenty-four, and I can't get out of bed in the morning, throw my clothes on and dash out the door. I have a whole repetoire of medical shit I have to do before I can even get out of bed.

No one knows the crushing anxiety that comes from all this. No one gets that train barrelling down on me is real. To me. Take this to keep the train from coming. Take that to counter the drowsiness. Take this to keep your thoughts from racing so you can sleep at night, just to start another day of all this. And I do it with a smile. It's dangerous for me to smile, because it betrays that reality. It makes people think I'm really not that hurt. That I'm maniuplating. That I'm a baby.

Suck it up, they tell me. You're tough. You're strong. Pain is pain. You got to push through it. I pity you, I say. I pity the fact that you can't see far enough beyond yourself to get me, to even try.

No one knows because they don't want to. I've tried to tell them. They don't want to hear. They cannot fathom living such a life, and how anyone can deal with it. So even if they're sympathetic, they forget ten minutes later when I'm struggling to keep up without limping, when I'm falling behind yet again, when every step is an agony. They forget because it's too painful to acknowledge, and the human brain prefers to block out that sort of thing.

I've been on the other side. I know this is how it is and life is always going to be, but it's worth it. My experiences have taught me that. I can't even ask you to understand, because you won't. You can't. What I do ask is that you don't judge me by your standards. Don't tell me to suck it up, be tough. You've absolutely no idea how far above your standards of strength I am, and just how tough I have to be just to get out of bed in the morning. If I ask for help, even if it's "Can you get me a glass of water," don't roll your eyes at me and tell me to get it myself. If I ask, it's because I'm at my limit, and I just can't do any more. What I ask is that you stop telling me to get rid of my motorcycle. I know it can be dangerous. I know I can get hurt. That's the way of the world. I was working out with friends in my high school gym when this thing happened to me. Where was the danger there? And look at the hurt it caused.

My bike is my freedom. It's me and the road and the wind. It's hiking trails I thought I'd spend my life trekking. It's freedom to go and go and not worry about the gas. Not worry about keeping up. My bike keeps up for me. It's all the adventures I dreamed of having, even if I never dreamed them this way. Can you truly ask me to give that up when I've already had to give up so much? Can you dare?

My son didn't write this. I did. He thinks no one understands except for others who suffer chronic pain and are always being accused of faking. I might not know the pain he feels in actuality, but I'm his mom. I know him. He's the strongest person I know. He will accomplish great things in his life, and most will never know the half of his greatness, because they'll never truly understand just how hard it was.



( 25 comments — Leave a comment )
Feb. 3rd, 2014 01:47 pm (UTC)
some days it is just like that.

other days i get up and the pain is just part of everything, like sunlight and the dog wanting to go out. i forget that it isn't like this for everyone else too. and when i remember, sometimes i also remember that everyone has their own pain, as invisible to me as mine is to them. the few souls who have never felt like this are only the briefly blessed.
Feb. 3rd, 2014 03:46 pm (UTC)
I thought of you as I wrote this. In fact, you were, in part, inspiration for writing it. (((darling lyonesse)))
Feb. 4th, 2014 03:03 am (UTC)
**hugs** thank you for thinking of me :)
Feb. 3rd, 2014 02:11 pm (UTC)
I've always wished there was some way for doctors to flip a switch and have someone else feel what person x feels, whether it's their chronic pain, depression, or inability to lose weight. It irritates me that people think all these things are imaginary.

(FWIW, my lack of sympathy area is co-dependency. I have little patience for that, and struggle to be sympathetic...so I really can't point fingers, can I?)
Feb. 3rd, 2014 03:52 pm (UTC)
I wish the same thing. A little empathy goes a long, long way.

I used to not get co-dependency, and while I still struggle with it sometimes, I do understand it just a little better. When you remember that every response we have as human animals centers on survival, things have a way of making better sense.

I still don't get how a person feeds a 1000 pound person all the things they should not be eating when the 1000 pounder can't get out of bed to get it himself. It just seems to me that feeding the bedridden a proper diet is completely in their control.
Feb. 3rd, 2014 05:13 pm (UTC)
But I think it ties back into what you said.

That 1000 lb guy probably has one pleasure in life...eating. That's probably the only thing that makes him happy, even for a moment. At some point it becomes an addiction like any other, and person 2 is enabling them, much like a co-dependent relationship. How hard is it to say no to someone you love?

Feb. 3rd, 2014 05:31 pm (UTC)
Sometimes, it's impossible.
Feb. 3rd, 2014 02:56 pm (UTC)
There's so much in here that, from a different perspective, I get, absolutely! I'm privilgeed enough never to have experienced such physical anguish, but mental anguish is quite another thing with the same people telling one to suck it up.
Feb. 3rd, 2014 03:45 pm (UTC)
I think there are folks who truly get it; there are unfortunately more who don't. They should, because I don't think anyone escapes this life without at some point experiencing deep physical or emotional pain. It's unfortunately easier to dismiss someone than the really see them.
Feb. 3rd, 2014 04:32 pm (UTC)
This is an amazing, beautiful, resonant post. Thank you for sharing it with us.
Feb. 3rd, 2014 04:52 pm (UTC)
Thank you so much. :)
Feb. 3rd, 2014 04:34 pm (UTC)
Some people just don't get it. Some people just don't stop to think. Both are sad.

::HUGS:: to both you and that strong son of yours!
Feb. 3rd, 2014 04:52 pm (UTC)
Thank you, darling.
Feb. 4th, 2014 01:21 am (UTC)
I cannot fathom the concept of a person who is not in constant pain telling someone who is in constant pain to "suck it up." I mean, I know it happens, obviously. We need to be more willing to accept other people's reality ...
Feb. 4th, 2014 01:28 am (UTC)
He's been told many times that he's being a baby, or that he's faking. It's really sad. Sometimes I want to smack people with some sense.
Feb. 4th, 2014 04:21 am (UTC)
What a beautiful tribute to his strength. Have you shared it with him?

Feb. 4th, 2014 12:39 pm (UTC)
I did. And I made sure it was ok with him that I put it up here. He said, "Go for it." :)

I love my kid.
Feb. 4th, 2014 08:46 am (UTC)
No one really has the right to judge another's pain... because we don't know, we can't know how it feels to them, even if we think we've felt it as hard in our time.

I've been more lucky than I deserve, I know. I know people who've been put through hell their whole life, and I hope I would never try to judge them... or at least, to recognise when I do.

Wonderful post.

Feb. 4th, 2014 12:38 pm (UTC)
Thank you, sweetling.

It makes me happy to know you've been lucky, or consider yourself so.
Feb. 7th, 2014 10:03 pm (UTC)
I read an Old Wives' Saying in a book by Peg Bracken (which was probably written before we were born) something like 'for every glass of wine we drink, there is a quart of vinegar" which is properly lowering and - when I look around me - rather worrisome, but I can only hope that when my quarts start coming, I show as much fortitude as other folk I know. I doubt it, but I can hope.

(isn't 'worrisome' a lovely word, but?)

I think we're lucky in one way - we have books, and imaginations, and so when life gets harder, good places to escape for a while...
Feb. 8th, 2014 01:57 am (UTC)
I do love you, dear. You've a beautiful mind with lovely thoughts in it.

(And yes, worrisome IS a fabulous word.)
Feb. 5th, 2014 03:47 am (UTC)
This pain is what my mother and others I know went through, My big concern however, is not physical pain. I suffered from chronic depression and there is not even a limp with that: you're told you are lazy and to put a smile on your face, even though it is more debilitating than a broken leg. I love this post so much because you bring out the invisible parts of his pain, even if it's not the same pain.
Feb. 5th, 2014 04:07 am (UTC)
I'm glad this spoke to you in some way.

Depression and anxiety--they're so misunderstood. "Just smile!" Yeah, if only it were that easy, right?
Feb. 5th, 2014 06:00 pm (UTC)
I know, I know, I know you do feel it.

I'm in tears for you, and for him, and I know the tears are worthless and don't do any good, but they're all I have to share ;_;
Feb. 5th, 2014 06:06 pm (UTC)
Francesca tears are magical enough; but Francesca tears of love are the stuff of miracles.

(((sweetling))) Thanks.
( 25 comments — Leave a comment )