Random equations in the mathematics of life

Posts tagged ‘disability’

What if A doesn’t imply B?

This weekend, The Scientist and I wandered off through the western part of the state.  He needed to hit a few specific geocaches (Click here.) and Alejandro needed a good workout.

To give an overview of what caching weekends can be like when you’re going for specific ones, this is the deal — we drove around 675 miles in under 40 hours to hit a mere 20 caches.  Yeah, it’s crazy for sure.  But it’s also a lot of driving.  It gives us good one-on-one conversation time, but it is not exactly strenuous.  To balance this, a few hikes are thrown in for waterfalls photos, virtual caches on the top of Mount Mitchell, and other such reasons.  For normal people, these are quick little jaunts (the two we did were each about 1.5 miles total), with terrain over which you need to pay attention, but not excessively so.  But as we all know, I’m not exactly normal.

For me, these hikes were extremely challenging.  I had to go slowly, looking down the whole time to carefully consider each step.  The Scientist was poised to catch me should I slip/trip/fall, and I did all of those.  I beat the snot out of my knee, for which I will pay dearly for the rest of this week, but it was well worth it for the photos I got, and for the sense of pride and accomplishment that I felt doing something “normal” for a change.

That being said, one very abnormal aspect of my attempt at normalcy, is that I hate meeting people along the trails.  Normal people move faster than I do, so I just stop and let them by.  I make a joke about it, smile, and hope it just ends there.  But sometimes people stop to tell me how “brave” I am, or how “inspiring” I am, and how they admire me for doing what I’m doing.  This is so incredibly disconcerting to me, not because they’re being nice, which I appreciate, but because they could not be more wrong about me.

People, I am not brave, I am not noble, and I sure as hell am not worthy of being called an “inspiration” to anyone.  My reasons for doing stuff like hiking up the side of a damn mountain stem from nowhere else but this: I know what is coming down the pike for me, and I am not ready to face it.  I don’t feel like it’s denial, because I do know that it’s inevitable, and I have already started to peruse the “everyday” wheelchairs.  However, I am rebelling against that which will be, to me, a catastrophic loss of my sense of self.  My independence is imperative to my self-concept, and that wheelchair, no matter how cool, threatens it.  And yes, I am well aware of all of the platitudes that remind me that it isn’t who I am, that millions of people use wheelchairs and are independent.  Please don’t waste my time or yours by retyping them.  Because yes, while I can be independent, I will lose even more of what I used to love so much.  I used to go for 10 mile bike rides just because it was a nice day.  I used to hike in the woods for hours to find the right tree in which I would then perch with the book I’d brought.  Playing softball until I was sweaty and grimy and sore was a favorite way to spend a Saturday afternoon.  All of those are slipping away, and I’m just not in a place of acceptance yet.

But in the meantime, I’d rather be honest with myself and others.  I’m not anything you might think on first glance.  I’m just a flawed, occasionally bitter and resentful, stubborn pain in the ass who isn’t ready to give up her life just yet.

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Squaring the Circle

About 6 years ago, I had a doctor’s appointment with the orthopedic surgeon who had ruined my knee.  (Yes, worker’s comp still had me seeing him for it.)  This was approximately 14 months after I started physical therapy with the amazing PT that I’d come to really adore.  He had always told me that he would not stop pushing me to improve until the time came that therapy turned, and did more harm to the joint than good.  That time had come.  I carried the report with me, and it felt like the heaviest piece of paper I’d ever felt.  The Therapist and I had talked for an hour the day before, and his disappointment at the failure of our joint efforts was palpable.

Because this was a worker’s comp case, I’d had what was called a Functional Capacity Evaluation. In this, I was hooked up to a computer that measured my ability to do numerous different activities, with the injured leg, but also with my hands and arms, to see how my body functioned as a whole.  The guy who administered it explained that the computer prevented people from faking the results, and laughed at my confusion as to why someone would do that.  My question was, “Why would you want to fake this?  I would think people want to get better.”  My naivete amused him, but he was sweet about it when he told me that some people want to bilk the system to get a higher disability rating.  I scoffed at that idea and told him that I wasn’t doing that – I had a life to live.  The results of the evaluation were quite clear.  Overall, I had a 92% deficit in my right leg.  This means that on average, my right leg functions correctly 8% of the time, and that is it.  That report also went with me to the doctor that day.

The doctor came in, having read the Therapist’s letter, along with the FCE Report, and his eyes were sad.  Despite the crap that had gone down, he really did like me and hoped I would get better.  He sat down with me and said that the official conclusion, based on all professional opinions and official tests, is that I will not walk by myself again.  Ever.  I can do it in small, enclosed spaces, like my bedroom where I can hold things and catch myself on furniture if I start to fall.  But I can never do it outside, where the ground is uneven, and never with shoes on, even inside because they impede my ability to feel the floor.  I was, in a word, numb.  It never once occurred to me that I wouldn’t recover from this disaster, and now I was faced with the possibility that I truly wouldn’t.

I spiraled a bit that day.  I climbed back, but only with the help of a few certain people.  As I am a huge fan of showing gratitude, I’d like to do it here.  These are in no particular order – just the order in which they popped into my head.  (P.S.  The tattoo is Latin.  It’s a quote from the philosopher Cicero, and translates to, “While I breathe, I hope.”)

The Musician – you and I have been best friends for a long time, and we know each other better than pretty much anyone else on the planet.  You are the person who has never given up, even when I almost did.  You sent me articles on athletes who had experimental procedures, you called me out when I was sliding too close to the edge of “I quit” and you have loved me even when I snapped at you in frustration.  You provide perspective when mine is skewed, and you have never failed to be there for me when I needed you.  I am so incredibly blessed, lucky, whatever you want to call it, to have you in my life every day.

The Photographer – my sister from another mother, my twin, separated before birth.  It never ceases to amaze me how well we have gotten along, never even having argued or snarked at each other in thirteen years of friendship.  We founded the Little Sisters of Perpetual Indulgence together, and kept the Sisterhood alive in the Sisters of Bad Habits as well.  You’ve gotten drunk with me, you’ve sniped and snarked with me when I needed to vent, and you were the one who compared my knee to a cheap whore when it acts like one (going down without getting paid).  I’m not sure what the hell I would do without you in my life, and I sure as hell hope I never find out.  You and I have told each other stuff that no one else knows, and for that, we’ll always been on even ground, since we could bury each other.  =)  No one quite understands us as sports moms, and that’s why you were the one person who didn’t bark at me when I spent 8 hours at a track meet, 2 days post-knee-surgery.  I love you every day, and I cannot wait til we can head to the islands together.

The Trainer – you have been in my life for the shortest amount of time in this crew, but you have made a huge impact.  You are the one who always helps me find the lesson, and I do the same for you.  No bullshit between us, no mincing words.  From pathological leprechauns to fruit bats, you are the one person who can strip everything else away to see the real problem I’m having and help me address it.  I can be who I really am when I hang out with you, and for that, you have no idea how grateful I am.  No masks to wear, no pretense to maintain – just me.  You became part of the “village” the “raises” my children, and they love you as much as I do.  No matter what the circumstances that brought you into my life, I will be forever grateful for the fact that you chose to stay there.  Thailand awaits us!

The Ambassador – so many stereotypes fly about teenage boys, and you break every one of them.  Your dedication to being there for me whenever I need you, and even sometimes when I don’t =), your protective streak that is a mile wide, all make you the son that other parents wish they had.  I know that my situation was part of the reason you decided to become a physical therapist, and to know that I helped to inspire you makes it all worthwhile.  Your smile and your humor make me feel better when I don’t feel well.  Thank you for being such an amazing young man.

The Artist – you and I have always had a connection, and that was so evident when I was sick.  You knew before anyone else did when I was in pain, and you’d magically appear with ice or meds, or the perfectly brewed mug of tea.  Your creative spirit and your ability to quietly get it done when you need to inspires me when I’ve had enough.  Every time you dance to your own drummer, you show the world what it is to be a strong individual.  I wanted to raise strong women, and you prove to me every day that I have succeeded.  I can’t wait to see how you rock the art world.

The Professor – From the time you were a baby, you have been so sure of yourself, and such a complex individual.  Other parents were fascinated by your natural resistance to peer pressure, and your self-assurance in who you were.  It was such a gift for us to see you come of age, and see how you developed.  You checked on my every day in the hospital, learned to do the IV infusions with quiet confidence, and appointed yourself my personal caretaker.  You are a natural born caretaker, and it shows in your sweetness.  My Pi Baby has become a Math/Econ Goddess!

And last, but certainly not least, The Scientist.  You and I went to hell and back multiple times over the years.  We certainly did a number on each other, and the damage can’t be undone.  But despite having to tear everything down, declare it “over and done” and starting from scratch, I think we’ve built a pretty cool friendship back up.  You’ve always been protective and supportive, and have done so much to help get stuff done so I don’t overdo it.  Your protective streak is definitely what spawned the Ambassador’s, but I’m grateful for it just the same.  I’m lucky to have you at the end of the day, every day, walking in the sand, swimming with the stingrays, and watching the sun go down.

Things may be deteriorating with my knee now, but I find solace in the fact that these people have chosen to be in my life every single day.  So even if my body decides to fail, the love I receive will keep my spirit perfectly intact.

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