Entries tagged with damage

You know how people who work out a lot always say things like, "Wow, that workout class of my choice was intense! I'm going to be so sore tomorrow I don't think I'll be able to sit down!" and then they go do it all over again and again and they keep talking about their horrifically sore stiff painful muscles and how it's going to help them get in great shape no matter how much it hurts?
Yesterday afternoon, I walked two miles between picking up my prescription, getting lunch, and strolling around the neighborhood. This morning I woke up in excruciating gruesome pain, and now my entire lower body doesn't want to move. My legs, hips, and knees have decided that unless I have my cane on me, I cannot walk.
Where is my special prize? I though we got prizes for sore muscles.
Please, fully healthy able-bodied person who works out every day and treats post-exercise soreness like a badge of honor, tell me why I should feel sympathy for you.

See, this is why I sometimes feel slightly triggered if a friend talks about how painful and excruciating their extreme exercise regimen makes them feel, especially if it's like bragging. You know. P90X or Yuppie Boot Camp or CrossFit or Zumba or Power Yoga or Dance Yoga or AcroYoga or anything combining yoga with anything or anything combing dancing with anything. You're relatively healthy, you exercise like crazy until oh dear, you are in so much pain you can't walk, ha ha, and you keep doing it and sometimes you laugh and attempt to compare yourself to a disabled person until your workout pain fades and you do all that healthy working out again.

(Also, I will never stop saying how sick and tired I am of hearing about Snobby Yuppie Yoga Workout classes. I get it, you stretch and expand your mind and you exercise at the same time; good for you; now put your mind back in your brain. Stop telling me how yoga can help me and why. Stop. Just... stop it. My mother (who casually teaches old ladies kripalu style disabled yoga) does that for me over the phone very well because we're the Gilmore Girls with more bickering and we do that kind of thing.)

The point is: Having physical disabilities and chronic illnesses means living with certain limitations unique to each individual, no matter what. People in wheelchairs do exercise and yoga, people with breathing problems take dance classes, people with semi-paralysis take martial arts, etc etc... and everyone finds a way to raise their own limits while compromising and compensating to fit the workout to them instead of fitting themselves to the workout. Unfortunately, not all of us are able to do this in a class setting or even a group setting for whatever reason.

So. When I say that my body is in horrible horrible pain from extremely simple, quick, easy working out after you say the same about extremely intense, slow, difficult working out, a tiny part of me runs off and cries.
The story:
When I was very little, I took gymnastics to try and help with the cerebral palsy. I lasted one year. I excelled at parallel bars and rings and anything that put me in the air. But I could not do floor exercises or balance beams. When I was a teenager, I took tai chi. The master was sixty and looked thirty. I was the youngest student. I kept making the mistake of following the master and not accepting my body's limitations. The master forgot that I was disabled. In the end, I wound up handling a few injuries that led to permanent sciatica and the master was so horrified that he offered to help me recover and to pay for doctor sessions. When I was in college, I took a few simple, mild exercise courses, and after every single one, while the other students were high-fiving and laughing and feeling energetic, I was curled up trying to hide my tears of agony. The first few times I tried even basic yoga, my entire body rebelled and screamed negative things until I meditated and listened and learned what was better for me, which led me and my mother to develop a highly modified version that was almost not yoga.

The point:
I have limitations with my disabilities. Do not tell me that I have none. Do not tell me that the only limitations are in my mind. Especially do not (ever) tell me that the only disability is a bad attitude. Back off and let me do what I do and make gentle suggestions here and there. Offer to help me stretch a little more and steady my arms while I lift a heavy thing. Help me stretch and flex my legs when I do my physical therapy. Do not whine to my face about how sore you are after your dance yoga power ballet spinning acrobatics martial arts class done in a well-lit air conditioned crowded room blasting out hip pop music. You chose that. You wanted it. You had the ability. Any pain you endure will fade and you will continue your workout readily because your pain means strength. You may even try to compare your temporary workout pain to a disabled person's chronic pain - good luck with that.

I dream about dancing. I dream about being a gymnast. I dream about mastering tai chi and qi gong. I do my best every day to make small, gentle, careful moves that point in all those directions. I don't push my limits. I raise my limits so that I have farther and deeper to go before I reach those limits. And it is going to take a long time. I have to be extraordinarily careful so I don't trigger various symptoms. I only look healthy.

So go on. Go do your Power Dance Acro Cycle Pilates Trampoline Athetic Yoga Karate Class. Rip up your muscles so they can knit together and become stronger. Be strong. Be intense. Be powerful. Be proud. Fuck it, be arrogant and condescending. You deserve it for all that hard work.
Just don't tell me that I can do all these things you do with ease and don't tell me I have no limits and don't tell me that I'm just challenged or differently abled. Do not insult me. Just talk to me. Then, if I ask, work gently with me.

Today is a day of deep, deep depression, fatigue, and chronic pain so endless that the abyss is right in my face grinning. Everything is a Cheshire cat.

I have been forming this post in my head since yesterday morning, when I woke up with nothing working properly, with only bits of my brain and body truly functional, and I had to put on a mask and a whole costume, I had to grip my spears and even a sword for dear life, I had to smile and pretend to shine because I refused to worry anyone, because I didn't want to sink further.

And people tend to get tired of me constantly talking about my pains and feelings, because whoa, can't I talk about happy things, things that maybe don't involve medicine and coping mechanisms and feelings?
But here is the Big Thing: So many people feel this way. So many dear friends will read this and understand and perhaps comment and know they have someone to help them stand and fight.
And that is the other Big Thing. We do need help. We do need to stand with each other and fight. On the internet and in life, there are people who will say we are faking, that we are pill addicts, that we are attention whores, that we are crazy.

I will stand up and say, No, I am not faking, nor a pill addict, nor do I desire attention. But crazy? Yes. Yes, I am crazy. Yes, I need help. I am getting help. Medications. Therapy. Exercise. Nutrition. Supplements. Herbs. Vitamins. Holistics. I am not afraid to tell you what is happening, because you need to hear it, you who would mock and tease and bully and tell me to "Just slap a Band-Aid on it and walk it off, just exercise and feel better, just eat this food for two weeks without any drugs, just smile a lot, oh hey, I felt sad yesterday and then I got over it, I know how you feel, I wrenched my ankle last week and wrapped it up and now I feel better, I know how you feel, maybe you're just pretending, why don't you just get better? Quit talking about how much you hurt, everybody hurts, it could be worse."
It could be worse, yes oh yes. Ohhh, sweethearts, it could be so much worse. Yes.
Here, let us try something: You can have my body for a while. You can feel every single feeling I feel, think every thought I think, know every pain I know. See how it feels. No? You can't? Really? Are you sure? Still no? Oh, dear. Well, then, I suppose we will have to stop associating, even if we have only been talking via a forum, a community, a social network, a bus stop, a party, via phone, via web video, in a store, in a house. Oh, well. I thought maybe you had enough compassion, or, you know, empathy. I guess I won't find out. But you know what? If it ever happens to you - and part of me hopes it won't and part of me hopes it will - I shall still stand with you even if you hurt me, because warriors stand up.

There are beautiful, wonderful, incredible, amazing, extraordinary, fantastic people who are being slowly devastated, crippled, destroyed by their own bodies' various systems, for no true reason other than they just happen to live in those bodies. Some of them think about how horrible they are, how they are useless, worthless, pointless, draining, a burden to everyone around them. I feel that way quite a bit. There are some who want to harm themselves, some who want to kill themselves. I cannot do that, but I admit I have imagined it. If I truly wanted to harm myself, I would stop taking my medications. I would let all the pain crash over me in one single tsunami with wave after wave, while I spasm and shake and seize and sob and scream and shiver because I refuse to give myself relief, because I refuse to make it stop. But I will not do that. I can not do that. It would destroy everyone who loves me, whom I love. And I know that. That is another Big Thing.

To everyone reading this who feels the same way: I love you. You are loved. You will always be loved. You are extraordinary. You are amazing. You are fantastic. You are beautiful in so many ways. I love you. I will stand up with you. I will give you spears, swords, shields. I will show you how to scream a battle cry loud enough to make the gods hear you. I will show you how to launch into battle with these monsters. We will never win the war. We will often retreat covered in blood and darkness, growling and licking our wounds and crouching together to patch up each other's wounds.
I will take you by the hand and lead you outside. We will stare up at the sky and say, "Oh, this is such a beautiful sky." The sky may not look beautiful. The sky may be full of dark storm clouds and we cannot see the sun. But just because there is a storm does not mean that the sky has gone away. The clouds and the dark will move, and we will see the bright, bright sky, all shades of blue, and we will see the sun, gazing upon us like the eye of a god, giving us light and warmth and strength. We cannot look directly at the sun, but we can look at the sky and call it beautiful, and we can look at each other, covered in war wounds, and say we are beautiful. We are. We are beautiful.
I love you.

Oh, and I wanted to add: I took my painkillers and anti-anxiety drugs today, of course. They are helping, of course. I got exercise, I meditated deeply, I spoke with a therapist, I ate healthful happy foods, I did all the things people suggest one does in these situations. I am very very slowly working my way back to a steady and stable mood, but it will take a while - many people don't understand that it takes a while. That is yet another Big Thing. "Why isn't your treatment working yet? What is wrong with you? Shouldn't you be feeling better by now? Why are you still like this?"
It is tiring, and it is irritating. But I am still going to share, and speak, and stand, and stay strong. Because you asked. Because you need to know. Because I love you.

Limply waving my hand in the air like I just don't care

I Say These Things Because.