Monday, April 9, 2012

Regardless of How Many Books I've Read, I'm a Meathead

I had a revelation this weekend which was so obvious my 10 month old is rolling her eyes at me and saying, "Duh Mom!" (okay, not really, but she could do those things, she's crazy-smart...unlike her mother). Since I've cultivated a small audience of insane people who apparently find me amusing, y'all get to wade through my boneheaded fumblings toward enlightenment now. You're welcome.

So, I love to exercise. I mean LOVE to exercise. That's not the revelation, in case you were wondering. You're not getting off that easy - y'all know I've got to ramble at you for several paragraphs before I get to my point. Anyway, every morning I wake chomping at the bit (well, at least after my second cup of coffee, because I'm not truly awake for the first 20 minutes or so of the morning), and I cannot wait until I put Pippa down for her morning nap and get to sweatin' and gruntin' (shut up, filthy minds).

And now you're all rolling your eyes and saying, "Crazy lady!" Yeah, maybe, but I wasn't born loving to exercise. In fact I spent the first 20 or so years of my life actively trying to avoid exercise of any kind, and during my early 20s I pretty much just viewed it as a cruel ritual I had to endure in order to be skinny. Over the past few years, though, my attitude has drastically changed. Exercise has become my place to feel powerful when life makes me feel powerless. So much of my life has made me feel powerless these past few years and I take those feelings of frustration and beat them out of myself through truly insane feats of physical punishment. I can't afford therapy, so I work out. It's good for me, it calms me down, gives me perspective and it makes me feel like this:

(For the record, that's a good feeling)

Overall, this whole exercise-as-therapy thing has worked great for me, but I have been plagued by pain and this weird popping/crunchy feeling in my right knee over the past few years. I sought the advice of a friend who's a PT (I also refer to her as "my awesome friend who knows everything") and she advised me to ice it, elevate it, taught me how to use kinesiotape, and told me to stop doing any activities that exacerbate it. I followed the icing, taping, elevating advice to letter...and pretty much ignored the "alter your exercise routine" advice. Mea culpa, Melissa ;). She also told me to go to the doctor but I lost my doctor when I lost my old insurance (UT likes to change its carrier every 6 months which is a source of much exasperation for a family that sees as many doctors as we do) and when I got new insurance, it took 4 months to get in to see someone.

Anyway, I finally saw my new doc last week. He asked me a bunch of questions examined the knee and said, "I'm guessing patellar tendonitis". My first reaction was:

(That's me saying, "Phew! He didn't say torn meniscus or anything resembling total internal joint destruction! Awesome! Insanity/P90X party back on!", couldn't you tell?)

What I said to him was, "Oh good! I'm so glad it's just tendonitis because I really want to train for a half marathon and if it's just pain and no joint damage or anything, I don't mind dealing with that."

And he was like, "Weeeelllllllll..." and then handed me a bunch of sheets of paper with rehab exercises on them and lots of repetitions of my least favorite word: DON'T. I rifled through them and said, "But I can still exercise, right?" He said, "Oh, definitely. It's great that you exercise, but you want to avoid jumping, running, and anything in which you bend your knee until it heals." So...everything I like...

(I think that one's self-explanatory).

He went on to explain that if this near-total lower-body rest plus icing, taping and rehab exercises didn't improve the pain and general crunchy feeling in a month to call back and he'd order some imaging and refer me to PT, but he didn't want to refer me to ortho because they'd just want to cut on me (at least we were on the same page there).

I went home determined to make the best of things. It's only a month, after all, and I can still work out my upper body as hard as I want. There's punching and kickboxing (without the bends or jumps) for cardio and I can use this time to work on upping the weights in my upper body strength training routines. "Yes, it will all be fine," I told myself.

And then I started to slowly implode and freak the freak out.

By Day 3 of no-jumping-no-running-no-lunging-no-squatting, I felt like an alcoholic drying out. I just couldn't get the same satisfying burn without bringing my lower body into things and the rehab exercises are all designed to *gently* stretch and strengthen my lower body - not a lot of fun for a gal whose idea of a good time is an hour of nonstop plyometrics. It all came to a head Saturday morning when I was doing a P90X upper body workout. I was pushing as hard as I could and I looked down at my heart rate monitor and it read "104". 104. My happy place is more like 165-185. I lost it. It was ugly. There was crying and ripping off of cursed heart rate monitor (because, of course, it was all its fault) and moaning about how weak I felt and how I was going to lose all the strength I've worked so hard to build up and "Screw it, I'm just going for a run! I have to run! I have to!"

My sweet, patient husband listened to my juvenile rantings for awhile and then began to point out to me that I exercise for the good of my body, that these restrictions are good for me and that they're temporary, and that just because I'm not able to jump up and touch the ceiling right now that doesn't mean I'm not strong. I'm still strong, I still have control, I just need to use that control to heal my body instead of hurting it worse.

So, in other words, DUUUUUHHHHH! Obviously, I should have already known all of these things. I'm not an idiot and I'm usually pretty good at self-analysis. However, when it comes to exercise and general issues of strength/power/control I have been remarkably dense. This discussion led to my revelations, which were twofold:

1. Pain sometimes means something.

This is an obvious one for most people, but I realized I have actually trained my body to ignore pain. See, I have fibromyalgia so my brain throws pain signals at me all the friggin' time. With FM, though, the pain doesn't really "mean" anything. My body isn't being injured, it's just sending pain signals. So, I've learned to shut off the natural response to pain. I think of it as packing up the pain in a little box and shoving it to the back shelf of my brain. This is also why natural childbirth was sorta kinda a breeze for me (that is, until the end when very intimate things began to rip apart, even my brainwashed self couldn't ignore that kind of pain). That pain was irrelevant - a side effect of a natural process, just a sensation like any other. The pain in my knee, though, it means something. It means my tendon is inflamed and getting more inflamed by the day and it would like me to please stop whatever I'm doing that's making it all cranky so it can chill for a bit. Okay. Lesson learned.

2. Physical strength doesn't mean much if it's not tempered by wisdom and adaptability.

I've been working out like a madwoman and calling that strength. It is strength, of a sort, and then again it's not. I get a lot of kudos for my "willpower" from friends and family, but I don't actually have much willpower. It's not willpower that gets me through an Insanity cardio plyometric circuit workout, it's sheer exhiliration. I have trained my brain to enjoy physical sensations that others don't. I LIKE feeling breathless, sweaty, trembly, just utterly spent and ready to collapse. That's fun for me. It's not hard to do things that are fun. True willpower comes from doing things that are good for you that you don't enjoy or not doing things that are bad for you that you do enjoy.

Right now, I need to cultivate the willpower to adapt my routine and avoid the tough workouts that got me into this situation in the first place. I could so easily give in to the temptation to say, "Meh, it's just tendonitis," and continue running and jumping and pushing, pushing, pushing. You know what that would probably get me? Injured. Worse. Like headin' to the ortho to get cut on injured. I have to have the wisdom to make myself slow down now in order to avoid future injury, and that is going to be one major feat of willpower for me.

Now, this doesn't mean that I'm going to sit on the couch and eat bon bons for a month. HELL no. Just because I need to adapt my exercise routine a little doesn't mean exercise isn't still great for my body, and just because I've realized that I need to re-define what makes me powerful doesn't mean it isn't okay to work out for mental and emotional therapy as well. Dylan and I are working on a way to get me access to a pool so I can learn to push hard in an environment that's a little kinder on my joints, and I'm going to continue doing my upper body strength and cardio workouts. I have learned through this experience, though, that I need to listen to my body a little more. It works really, really hard for me. I need to show it a little love.

Monday, April 2, 2012

Rylan Awareness

So, today is World Autism Awareness Day. Folks wear blue, put blue lightbulbs in their homes, and change their Facebook profile pictures. Before I had an autistic child, I thought this was silly. "Autism awareness," I thought, "I'm aware of autism, who isn't?" If you are thinking similar thoughts, read on and I'll tell you why I've come to believe that raising autism awareness is vitally important.

First of all, when pre-Boog Megan said she was aware of autism, this is what she was aware of:

For the record, Rain Man awareness is not autism awareness. Rain Man is a fictional character and the movie is more about Tom Cruise's journey towards non-douchebaggery than about raising autism awareness.

Now, autism is a bit more visible in the media and just in general these days, so now someone who doesn't personally know someone with autism might have this kind of awareness:

As awesome and inspirational as she is, Temple Grandin awareness is not autism awareness, either. Here's why: If you don't know someone with autism personally and you see Temple Grandin casually presented in the media, it can be very easy to say, "Oh, look, she overcame her autism and is successful, so all autistic people can do that," and then you can forget about autism secure in the knowledge that, with enough determination and tight squeezes, all autistic folks can become Temple Grandin.

For the record, yes, many children with autism can and will grow up to be Temple Grandins, but it takes a village, a LOT of work, and more money than you could imagine to make that happen for most of them. Rylan is 3 1/2 and I've estimated that he's already spent nearly 1000 hours in therapy, and we've spent enough on his medical and behavioral care to finance half a decent college education (and that's with insurance).

The "work" aspect of autism isn't terribly visible. In fact, I myself have been guilty of wanting to constantly present the soft and fluffy side of autism because I want people to love my boy and realize that he's a valuable and loving human being. He is. He also doesn't feed himself, isn't potty-trained, doesn't talk, doesn't sleep, has trouble following the most basic of instructions, is nearly impossible to discipline since he's nearly impossible to communicate with, and likes to lick his hands and rub his spit on unsuspecting strangers. Not so pretty, right?

That brings me to the second aspect of autism unawareness that troubles me: the fear. I remember the first time I saw the "1 in 110 kids have autism" ads in a magazine. I was probably 18 or 19 and I thought, "Dear God, how terrifying!" I was so scared I would have a child with autism and I thought it was one of the worst things that could ever happen to a parent. I thought that right up until I met Rylan. Rylan is not scary. He loves to dance. He can't pass his sister, dog, cat, father, or me without giving us a big bear hug. He likes to be held while he falls asleep. Being tickled makes him laugh. None of that is scary.

I'll tell you what is scary, though, the crushing responsibility of being his parent. Will I ever be enough to help him reach his full potential? Will I have a strong enough voice to advocate for him? Will I be able to make enough money to get him the services he needs? Will I be able to make him understand there are dangerous people and things in this world? Will I be able to keep him safe? Will I be able to erase the sting of being made fun of, stared at, pointed at, and (God forbid) beaten up for being different? Will I be enough of a friend for him should he end up friendless? Will I live long enough to provide for him as long as I possibly can?

Nobody is talking about these things, but I don't know a single parent of an autistic child who isn't thinking them.

So, why should someone without an autistic loved one care about the work and the money and the false fear and the real fear? Well, setting aside the idea of basic human compassion, I'll tell you why: if you don't have a loved one with autism yet, you will. The incidence of autism is climbing and is now at 1 in 88 and may be higher for some populations. We need to face the fact that we're all going to need to learn to speak autism soon. I guarantee you you will, at some point, have to interact with an autistic person in the course of your life no matter what your profession or parental status. Parents and teachers and therapists of autistic children are working hard to equip them for interacting with a public that doesn't understand them, a public that isn't truly aware. I contend that we'll all enjoy better results from autistic/non-autistic interactions if non-autistic folks try to meet autistic folks in the middle, though. If you're trying to have a conversation with someone who only speaks German, it makes sense to try and learn a little German if they're trying desperately to learn a little English, right?

You should also care because if you don't take the trouble to get to know someone with autism, I promise you you're missing out. Rylan has taught me to slow down and appreciate the most mundane details of life. He's taught me greater sensitivity and compassion. He's teaching me, daily by example, to be courageous and work very, very hard. He never, ever gives up no matter how hard a task is for him and he is always happy to go to school and therapy even though both mean a lot of hard work for him. Living in close contact with a person like that changes you for the better despite all the work, energy, time, money, and fear.

This is long and possibly a bit jumbled. I have a lot of thoughts about Rylan and autism that are hard to express. My most important one, though is, that we need World Autism Awareness Day not so people can become aware that autism exists. Unless you've been living under a very big rock for the past 100 years, you know that. What we really need is Rylan awareness and Jack awareness, Lily awareness, Carter awareness, Liam awareness, Tony awareness, Caden awareness, Bean awareness, Ashton awareness, Leila awareness, John awareness, Seth awareness, Alex awareness (just to name a few of the autistic children I have the privilege of knowing in real life and through an online support group). They're each beautiful and intelligent individuals. They're not scary and they are working hard and so are their parents, and they're growing up in your world.