Reflections of and on a probably Asperger's parent parenting an Asperger's kid (or 2)!

dragon pups

dragon pups

Wednesday, November 7, 2012

On Dis-Ability

This is both deeply personal and highly philosophical....

And it may ramble because pain meds are good...

SO I went to the Orthopedic doc today.  While this may seem innocuous, it is in fact VERY, VERY traumatic for me personally.  I will give you a brief medical history to explain – here’s what the doc got:

I have experienced patellae [kneecap] dislocations since infancy. At age 7 I had PT [physical therapy] on both legs.  Dislocation continued at a frequency of about every other month (where the knee cap would return to it’s appropriate location without assistance), and a significant dislocation every year or so (knee cap would be dislocated for several seconds, most times I was able to relocate it by adjusting leg position).  At 18 yo I had a severe dislocation, required ER, demoral [sp?], and medical assistance to relocate.  In 1995 I had bilateral patellae realignment surgeries on both knees.  Meaning it was an 2.5 hr open surgery for each knee, the doc told me he “lengthened” the tendon on the exterior of the knee, “tightened” the tendon on the interior of the knee, and used arthroscopic to “clean-up” arthritic damage under the knee cap.  In 2000[ish] I developed intense joint pain in my whole body. Orthopedic evaluation at that time told me I would need both joints replaced, but was not old enough.  In fall 2011 developed significant swelling of the left knee, had 6 weeks of PT that focused on my IT band.  In August of 2012 I developed a “catch” after repetitive motion in a squat (teaching swimming) there is a “glitch” that prevents the knee from straightening, is relieved by pulling foot vertically to butt MOST times.  In lower exterior of knee a spot gets visibly large, is SENSITIVE to touch, but “glops” back “into place” when gentle pressure is applied.  An upper interior spot “twinges” with walking occasionally and leg loses ability to support weight.

So… that IS the short version.  What this doesn't include is: that my very first memories are of the pain of dislocation, playing in a restaurant parking lot; the nights the weight of the blankets would trigger a dislocation; the tag games I didn't and don’t play; the fear to go to middle school PE because it dislocated kicking a soccer ball in the first month of school; the ice and anti-inflammatories and watching others play and choosing not to participate when asked; Looking into a man’s eyes begging him to call 911 to help me after just 3 weeks at college; The year between the Big Dislocation and the surgeries spent wearing ONLY skirts to hide HUGE metal braces, staying alone in my apartment so as to avoid ice; the 12 weeks spent in one summer TOTALLY unable to get my body into the bathroom without assistance from others; the 3 years of PT after double knee surgery to walk again; walking down the stairs backwards at my college graduation, still unable to be “normal”; the nightmares that have plagued me of the pain or nightmares of people making it dislocate to punish me; the sensation of a crow bar trying to pry open my knee when ever a storm front moves through; the attention and care I give to every step, every day to be sure I am not twisting or unstable; scaring a group of Brownie Girl Scouts because they could hear my knees as I crossed the room; the inability to run to catch up with my kids– and the FEAR…

There have been times I am SO frustrated by my “lot”! BY GOD! I look normal – there is NO PROBLEM – umm... until there IS – and then it is MAJOR.  I was an athlete – a swimmer – in high school, because it was the ONLY sport “safe” for me to participate in.  I absolutely LOVE to dance – but I MUST be right next to a wall to support my body, and concentrate on not twisting.  Gained a bunch of weight after the surgeries – have NEVER been able to loose it – it hurts too much…  one leg swells, so I use the other harder, and then it swells, and then I have to sit out for a few weeks, and then I’m even stiffer when I try to exercise again.  MANY people have said they do not believe me that I have this problem, or that I am exaggerating, or that I am not doing enough to treat it. It’s like an invisible issue, until it requires IMMEDIATE assistance… - but even then – if the dislocation was fast, they didn't see it, they didn't feel it, so did it happen like I said?

And the FEAR!!!!

The Big Dislocation was awful.  I was 18 yo, end of my freshman year of college, was home [CA] walking 4 children ages 11 – 5 yo to the local park with my 200 lb dog. I was sort of babysitting them while our folks visited.  I tripped stepping up the curb, dodging the leash… and fell.  My knee cap was on the back of my leg.  I tried to push it back, no go – I tried to bang it back, no go – I hit a wall.  The oldest kid offered to run to my house to get my mom [she did NOT live in our neighborhood - but she went].   A man showed up out of no where, asked if I needed help, I told him yes, he asked if he should move me.  I THEN remembered my first aid training and assessed the scene… I was by a 4 lane major thoroughfare in Southern CA with 3 children under 10 and one 200 lb dog, my head over the gutter, unable to stand or move, the cars were passing frequently… the kids & dog just watched me.  I suddenly realized I could NOT protect them from this stranger, & I WAS RESPONSIBLE FOR THEM!.. but also that if I got excited, panic would ensue… so I asked him NOT to move me, but asked the kids to stand away from the road, saw the dog sit.  Then a lady (another stranger) showed up.  One of the 2 adults told me they had seen me fall and not get up, so stopped to help.  I told them I needed 911 help.  This is prior to cell phones, so they went door to door in a residential neighborhood looking for anyone home in the middle of the day to call 911.  Then I remember my dad showing up – he took the kids & dog – whew! – but the leg was still dislocated, unmovable.  He had a fleeting moment of shock/ worry on his face – so short I wasn't sure until later – but he is a cop, he’s peels dead bodies off streets, he schooled himself, and asked me if I could fix it.  I could not – I felt horrible for disappointing him. Then ambulance arrived. The ONLY time I screamed is when they lifted me to put me on the gurney.  I spent what I later learned to be about 1 hour in stop-and-go traffic on an LA freeway to get to the hospital holding my leg on a splint, could NOT put any weight/ pressure on it.  They shot me up with demoral [sp?] – and I then waited.  I heard the woman in the room next to mine throwing dishes, fighting with nurse – recognized it as a diabetic emergency, and waited.  They finally came in a team, and I only cried when the joint went back in place.  I went home.

The days that followed were ALL about fear.  I learned how afraid my dad was, how when he first saw it, his experience with car wrecks told him I would need immediate surgery to correct.  How my mom was SO scared waiting to get to the hospital, waiting with me in the waiting room, to see me SO souped up on demoral [sp?] – and it is GOOD SHIT, BTW.  How terrified the 11 yo was thinking that it all depended on her, and she wasn't sure where I lived, and she got lost once, and felt INCREDIBLY guilty about it, about how the littles were TERRIFIED that my leg would always look like what it looked like when I left them, about how the scream to get on the gurney was giving the littlest nightmares that I would never be OK again.  I HAD to go visit them to reassure them, see their fear, meet it. They told me I needed surgery, but I left for college in 2 days – to VA.  It would mean missing a semester of the college I had worked so hard for - the fear of losing my education.  And while the pain was bad, what SCARED me was that I was responsible for those kids, and could NOT have done anything to protect them.  What if the dog had run into traffic? He’d have been hit for sure – what if one of the kids went to get him?! I would have watched a child die.  What if the strangers were NOT good people, I could NOT have protected them.  It was HORRIFIC to look in the eyes of a 5 year old, have them ask if I could stand up and walk home, and I could NOT.  I carry SO much guilt for scaring them!  And they were not the first or last that have carried that terror with me, for me…  What if it were MY child looking at me, at mommy, and I had to tell them I was broken, they had to go get help… and I waited – had the surgery the following April, so had months to grow and feed that fear.


The next years were even harder… you had the surgery! The problem is addressed! WHY DO I STILL HURT? WHY IS THIS SO HARD?! PT SUCKS BIG FAT WADS OF HORRIBLE ICKYNESS!!!!  A LOT!  My dad talked to me about the courage to see PT through.  You cry ‘cuz it hurts, you cry ‘cuz your frustrated with your body, you cry ‘cuz you can’t be the “you” you were, you cry ‘cuz you don’t see an end, you cry just ‘cuz… fear turns to anger: you push your body too hard too fast, and cry some more.  You feel left out and sorry for yourself, and cry some more.  You get angry that everything takes SO much more time & effort, and you cry some more.  You get angry at how much of a burden you are to those around you [room mate, family, store clerk, EVERYONE], and cry some more, you get embarrassed at how obvious your need is to everyone under the sun even if all you are trying to do is walk across the yard, or buy groceries, and you cry some more.

It was in this time that I decided that EVERY BODY has a disability of some kind or another.  

Some are OBVIOUS, some not, some show up occasionally, some all the time, some in their bodies, others in their minds, others in their emotions... we ALL have scars that HURT a lot and have needed or will need LONG times to heal – scars that are solid enough not to tear when hit again, but still make every step painful, that we are still ginger about when we go through our daily lives, that are integral to who and how and why we are…  That make us cry when times are dark, and we work hard to live with E-V-E-R-Y S-I-N-G-L-E D-A-Y.

I came to terms with the fact that I might get some better, but not “all the way” better.  Once lost, it is NOT regained, so I needed to focus in new directions, look for lessons and positives.  I sought out those things that made me stronger, not weaker, I looked HARD at who I wanted to be, and HOW I wanted to be, and I tried to go there.

I was TERRIFIED when a new doc told me I would knees replaced 5 years later! WHAT?!  I just didn't know it was that bad… I cried again.  I told my husband and my self to be ready for the day that I would lose the ability to walk. I was 25 years old, told that I would just “have to suffer” until technology caught up with my needs and replacements lasted longer than 10 years.  The original surgeon confirmed the diagnosis, explained how all that hard work had been a “stop-gap” measure to buy me time.  I cried some more, and looked for new lessons again.

I got married, got a job, started a family, VERY carefully, on MY terms, and we have been “successful” despite my “disability”.

Then we got into the Autism diagnosis, and I became an experiential educator, teaching swim lessons, hiking hills; I got certified to teach High Ropes, life guarding and canoeing… after age 35.  Every fall when the cold brings back pain, I am afraid AGAIN that I will NOT be able to work next spring…

But the rule of joints is “use it or lose” – move through the pain or you won’t move at all.  The rule of pain management is “moderation” – be sure you don’t build up a tolerance so you have to increase dosage or strength.  So I continue.

One thing that STRUCK me when we got into dealing with Autism, and treatments and schools and advocacy is the “Person First Language”.  It echoed what I had decided earlier – that the person is a PERSON with strengths (abilities) and weaknesses (disabilities).  The phrase I CANNOT forget was:

“Disabled is the only minority that anyone can join at anytime in their lives.”

Accidents, birth defects, time itself, all of this put together… we are all VERY likely to be a part of this “minority” at some point in our lives, even if  [HOPEFULLY] temporary.

So what IS disabled?

I am not shortsighted enough to believe that we can ALL be “disabled” in a political sense – in the ADA compliance sense – that ALL Walmart's need enough wheelchair-carts for EVERY person who could possibly come in and need one at the same time – in the sense that NO building should EVER have stairs – getting through daily life is gonna be “rough” and difficult for everybody… so if that’s the case, shouldn't we assume it’s SUPPOSED to be that way?  And part of the whole “get the waiver” thing we have issues with is the financial part – the government just cannot support the growing number of people that need it.  If our son IS “high-functioning” and we are able to homeschool him by milking our parents and friendships and offer insight from our OWN experience, shouldn't we?  Others need that assistance more than us, right?

But does that make his Autism “less”?  Is my lifetime fight with my knees “less” than diabetes or depression?  ISN'T “disabled” actually “Differently Abled”?  CAN’T this be an extreme expression of the variability of humanity?  SHOULDN'T we be trying to embrace the diversity, learn the lesson?  WHY CAN’T we just believe that we ARE supposed to be different from one another? 

How "differently abled" does a person have to be before they are "disabled?

There are certainly times when I am UNable... when the weather pain is so distracting I can't function, when the choice to participate create the opportunity for others to suffer too, when doing stairs and carrying heavy loads will mean I cannot last the day, when I've taken all the meds I can and my body still hesitates to get up. I carry a crutch and a cane in the car, use a walking stick on ALL hikes, go VERY slowly (holding up others).. and those times I AM disabled.

But other times, I am VERY able.  Academic work? I am SOOOOO there!  Public presentations?  NO PROBLEM.  I have compensation skills: I can't catch up with kids or puppies, so I am LOUD; they ALWAYS come back [eventually].  I have learned to turn parts of my body "on" and "off" (like sitting still for the shots, or not tightening the inside thigh so it pulls on the dislocation).  Many days my body is NOT my friend, but I work hard to be self-aware - to share wisdom since I can't share physical activity.

I always end up coming back to the Bible verse that says we are all parts of the Body of Christ.  THAT makes sense to me, since every cell in a body is specialized.  A Team needs everyone to play a different role to be sure every job gets done.  A Family composed of all the different personalities and contributions of every member.  A System needs more than one component as well as multiples of a component.  A Spectrum requires the ends as well as the middle – removing the ends only makes new ones.  In the words of Kenny Rogers, “Every hand is a winner, and every hand is a loser” – there are multiple sides to every story.

We just can’t all be in the same place at the same time…

So WHAT is disabled?

UPDATE: That appointment? I got cortisone shots in both knees because the cartilage is gone - I am bone-on-bone under knee caps in both legs.  We will continue to "buy a little time" - IF cortisone and arthritis treatments work for me.  He reiterated that I WILL need both knees replaced, sooner than later (within 5 years or so), but that I am lucky that my structure is not severe enough to require breaking the tibia (shin bone) to heal crooked so that the joint is straight.  So how "disabled" am I? or will I be?

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