Catching Up

It has been way, way too long.  My apologies!

The simple fact is that I've been drowning.  Work, physical issues, end-of-school chaos with the kids, all of it.  I know, I know...excuses!

The fact is that my own dissatisfaction with life in general has sapped my creativity.  I do find bits and pieces here and there in the form of my first Bargello quilt, some gorgeous prom portraits, and some spectacular macros after a storm traipsed its way through my roses.  But overall?  Meh.

I'm finding myself sliding into the spiral of increased stress causing lower pain threshold, and as most spinning rides, it's making me pretty sick.  I'm seriously tired of the constant battles to keep the swelling down and the flexibility up.  I had to measure the atrophy points again because I needed to order replacement straps for my brace, and found that it's gotten worse.  It now stands at 2.5" on the quad and 1.25 on the calf.  Lovely.

But it seems like the peripheral bullshit is what's really getting to me. For example, I had several copyrighted photos stolen and altered.  The best part?  It was by my son's yearbook adviser.  Nice, eh?  I'm working towards resolving that particular issue shortly, but his impending final exams and graduation are really good reasons for a bit of restraint when it comes to timing.

And as usual, there's my job...our office at work has been given a monumental task by our client who wants to discontinue our contract, but cannot afford to do so this year.  So the general opinion throughout the office is that the client is setting us up to fail so then they have "good reason" to bail in the next turn of the fiscal wheel.  What makes me think this?  Well, they change their minds on what they want every other week, but keep deadlines the same.  They have people on their end who have responsibilities that must be accomplished in order for the project to progress, but those people won't do their job.  The client refuses to own this problem, or to do anything about it.  But guess who gets blamed?  *ding*  We have a winner! 

So, like most people, I'm searching for an option, as it appears that my current option will indeed vanish at the end of 13 months from now.  But then I got thinking...

Maybe there is a better way.  I will definitely bust tail to find a "real" job like a responsible adult should.  But ya know, maybe it's time to renew my efforts to complete a potentially beneficial project as well or even instead.  It's possible.  I'm trying to shift my paradigms yet again, working to mold the negative and the stress into potentially good moves.  If I can shift some of the mental stress, maybe it'll help with the physical, no?

I do realize that my medical status is, well, static.  "You're not going to walk again by yourself" is pretty clear, and the miracles of modern medicine hadn't quite caught up to my level of gimpyness.  But we'll see.  In the meantime, it's on me and no one else to break the pain cycle of stress.  No one else can do it for me.

So it's time to get in gear.  All 3 kids are college students as of next weekend. It's time to get my life together and make it happen.  Amanda Palmer started a thread on her Twitter feed the other day that went viral pretty quickly.  The basic premise, along with the hashtag, was "FuckPlanB."  It makes total sense, if you think about it.  If you hide in the shadows of a back up plan, what impetus do you have to make your true dreams happen? 

Time to Fuck Plan B...how will YOU do it?

Spring is here...let's eat!

There are so many classic signs of spring: from the first appearance of robins and daffodils to the latest short, spring fashions showing up on cute co-eds. But one of my favorites is the folding tables and crates dragged from trucks, laden with fresh vegetables and fruit.  When the Farmers' Markets start up, my creative juices start competing with Pavlov to inspire me.  While I love to peruse food blogs on any given day, I turn into a recipe stalker when this season hits.

One of my all time favorites is Smitten Kitchen. Deb's culinary explorations are not just delectable to taste, but also to visualize, thanks to the photos that accompany each recipe.  She always includes a link to one shot of her unbelievably cute kid, which just adds to the appeal for me.  Her latest offering features shaved asparagus, which she actually did in a similar post a while back, but on a pizza.  I have plans to make that pizza very, very soon.  (Like maybe, the next Saturday the Scientist is off geocaching and won't be home for dinner.) 

Another great one to peruse is Marcus Samuelsson's page.  His background really gives him an extra little edge, I think, when it comes to creativity.  The guy was born in Ethiopia, raised in Sweden, and now lives in NYC.  talk about being able to pull from several different cultural threads! 

Of course, while eating healthy is important, especially for those of us who start behind the physical eight ball, you have to have a little bit of la Dolce Vita, right?  For some really fun applications of it, go poke around at Bakerella.  She has got some amazingly cool ideas, and most are simple enough for really anyone with a little time on their hands and an occasion to match. 

So grab yourself some fresh, juicy fruit, or maybe some veggies and dip, and peruse a blog or two.  Get inspired to use healthful ingredients in amazing ways that will make your palate spin for joy!  And if you're so inclined, please let me know of other food blogs that I should be exploring.  I can always read more!

Blindsided

It's funny how the weirdest things can come from almost nowhere to clothesline an otherwise peaceful state of mind.  I have been having issues with my stenosis escalating, as well as more pain and swelling in my knee, and both have adversely affected my confidence and calm.  But this one...this really nailed me.

My wanderlust has never really been a secret to anyone who knows me.  Since I was old enough to understand the phrase, "Lets' go!" I have always been happier when I'm going somewhere new, experiencing a new place, culture, meeting new people, trying new food.  I guess it ties in with the whole AD/HD child thing, but I just like being on the go.  So when I was at the grocery store the other day, I pondered picking up a magazine to read in a nice bubble bath that evening, and as my eyes wandered over Cosmo telling me how great my sex life could be, and Glamour telling me how to look fabulous in this year's spring fashions, I was inextricably drawn to the latest issue of National Geographic.  The title was simple enough: 100 Journeys of a Lifetime.  *DING*  Ladies and gentlemen, we have a winner!

I never really had a "bucket list" of places that I wanted to see when I had the chance.  My "list" consisted merely of the phrase, "All of it."  So when a quick flip through the magazine as I stood in line revealed Machu Piccu, the Great Wall, the Fjords, and other delicious feasts to explore, the decision to purchase it was a no-brainer.  I had stuff to do when I got home, as we had a friend coming in from out of town for an overnight stay.  But the magazine was waiting for me upstairs like an impatient lover, and I knew it.  Dinner was made and enjoyed, lively conversations exchanged, dishes washed.  And then, finally, it was my time to go curl up and let my mind explore all the places I knew that some day I would photograph, the places in which I would immerse myself, absorbing their magics, their spirits, their personalities.  Through them, I will learn the real histories of people, and hopefully work for a peaceful future.

As I delved into someone else's photos of these places, I read about "climbing the elevations," "renting a bicycle" and "multi-day hikes."  It was like showing a starving child a feast and then saying, "But you can't have anything other than bread and water."  What was a source of excitement for me quickly became glaring neon signs of everything I will never be able to do and see.  I simply do not have the physical capability to do the required hike to get up and into Machu Piccu for example.  Walking the 7 mile stretch of the Great Wall?  I think not.  As my fingers turned the pages, my heart grew heavier and heavier.  It's one thing to have your limitations be mostly in the background, but it is quite another to have them dropped like a brick wall in front of your face.

The realization of just how many places are now out of my reach, hit me harder almost than the news that I wouldn't walk again by myself.  I always had the attitude that I'd "work around it" but I am having to come to terms with the simple fact that there are things that can't be "worked around."  Wheelchairs are simply not designed to be all-terrain vehicles, and they clearly are not designed to handle things like steep mountain trails.  I tend to be pretty amused when someone tells me that I "can't" do something because of my disability, and I take great pleasure in proving the person wrong when I do it.  But this is me having to face facts.  And quite frankly, those facts really suck.

My head-space is not a healthy one right now.  I know it, but I don't know how to fix it.  I'm not even sure I have the strength of character to accept this with any sort of grace, and that's just as humiliating as the facts I'm trying to accept.  I'm in a place where I hate my body.  I'm furious, resentful, frustrated, bitter, and sullen.  It's a lousy combination, yes.  I'm well aware.  But I'm just not sure I know how to get out of it.

Any ideas?  Feel free to comment.

Who says?

People with disabilities feel a myriad of emotions towards the able-bodied.  Some of these, obviously, are unrelated to the physicality, but for the purpose of this blog, we're sticking with those that are directly related.

Occasionally, there can be jealousy.  I know this one from personal experience that while most days, it doesn't affect me, there are days when I am green with envy at those people who can carry things in two hands, walk by themselves, hold hands with a partner and a child.  I could write volumes on the insecurities that play into this, along with the potential damage done if it isn't tempered by acceptance.  However, that too, while valid, isn't quite where I'm going.

That mixture of amusement and frustration, generally accompanied by a rolling of the eyes and a shake of the head, is my focus for today.  It's the one that is sparked by ignorance and assumptions, and a general cluelessness of which I rant today.  So grab yourselves a nice beverage and a snack, and let's compare notes!

In the midst of a conversation at the office recently, I mentioned that the Dynamo, good friend of the Professor, just got an iPhone.  Now, for those who are still living under a rock, the iPhone looks something like this:

(Please note: photo used without copyright permission for educational purposes only!)

So, as we can clearly see, the iPhone, in all its glory, has a touch screen.  The Dynamo is blind.  And as I mentioned how much the Dynamo liked the interface with her other adaptive technological devises, the inevitable exclamation hit the table.  "But she's blind.  She can't use a touch screen!"  Uh.  Why don't you tell her that and see how far you get? 

Then there is the photographer who, after hearing on a public forum that I have a disability, told me flat out that I have no business even trying to be a photographer.  Since I cannot squat, kneel, move quickly at angles, like other photographers, I am taking valuable business away from those "who can do the job for real."  He told me that having aspirations was fine in theory, but that I, like most "handicapped" people, needed to "learn [my] limitations."

Well color me flabbergasted.  'Cause see, while I might have been a tad slower than most people in getting down and back up, I had no physical issue getting this shot:

And miraculously, I was able to "move fast enough" to catch this shot, but not get myself or Alejandro wet:

Keeping steady enough to capture the Artist's unbelievable eyes?  Hmm.  Didn't seem to be a problem:

Now, the surfer dude may not have been steady on his feet, but I think my angle and my speed was pretty comparable:

Yes, I could go on and on, but if anyone has AD/HD like me, it's already kicking in.  The bottom line is that the general ignorant public truly has no clue about the adaptive maneuvers and actual abilities that we have.  

So when someone tells me that I "shouldn't bother" being a photographer simply because I can't walk like they do, or can't kneel down, I'm left with a conundrum.  How exactly am I supposed to respond to that?  Part of me feels angry: I'm tired of the stupidity, but it isn't my job to engage in a battle of wits with a clearly unarmed person.  Part of me pities the person: to be that ignorant must really suck.  Part of me just rolls my eyes and ignores it, but the issue there lies in the fact that the ignorance and the stereotyping is perpetuated.  I wind up not really knowing what to say, what to do, how to react.

Instead, I think I'll just leave that guy with this:

On a dime...or maybe even a penny

Some days, all you can do is duck and cover.  However, as effective as that strategy can be, it doesn't get stuff done, and it doesn't prevent new stuff from hitting the Master List.  So sometimes, an even better strategy is to just stop.

Now, I do realize that this doesn't necessarily solve either of the problems I mentioned above.  However, it does allow you to better assess where things are, what is left to be done, what can be put off, and what needs your attention rightnothisverysecond.  It allows you to do one of the most important things in your daily life: prioritize.

As of now, the Master List For Work reads something like this: reconcile the selection routing sheets for upwards of 75 folders, review all new items, fix all of the edits on selections in the system, extend contracts to teachers for item writing and reviewing, email teachers to help solve their issues, or to gently blow them off if needs be, prepare training materials for an upcoming session, try to figure out where the rest of my stuff is for the new part of my job, organize my desk better so that I am not driving myself nuts trying to find things, clean out rejected selection folders and shift their status in the system, do all of the EC and ESL reviews for over a dozen assessments, write my own fill-in items, start to build test forms, and about a dozen other things that I haven't even thought about today.  Obviously, there is no way to get this all done in a day, or even a month.  Many of these are ongoing.  However, some of it can be done in a day, but it requires a solid block of time, preferably uninterrupted.  Now, I don't know about your office, but in mine, the word "uninterrupted" is somewhat of a source of amusement.  Its rarity makes it precious and valuable, but it also makes attaining it nearly impossible.

And of course, like any other working parent, my Real Job starts when I walk out of the office.  I pick up the Ambassador, run any errands that need doing, and head home to deal with dinner.  After dinner, I may or may not have kitchen duty.  At that point, I am wiped out.  The idea of tackling my Master List At Home is so daunting that I don't even try.  So things pile up.  Weekends can offer some time to knock some items off, but when away games and unexpected circumstances crop up, time grows really short.  So when our friends wanted to see how our house was laid out, I showed them.  But holy hell, did I cringe.  It made me realize how far away from me that Master List has gotten, and how desperately I need to take some time to address it.  It's gotten to where I have sub-lists for different rooms, because the list has grown so huge.

I realize that I have to take my limitations into consideration, but man, there are days when I just want to say "screw it" and blitz all out until everything is done.  Too bad it isn't actually possible!

And so, today, I have decided to stop.  Stop totally, step back, and revise the Master Lists into priorities.  Stephen Covey denotes the difference between "urgency" and "importance" and it's time for me to do the same with the things I need to get done.  Otherwise, I'm going to go crazier than I already am.

But for right now, my first priority above all, is to take a deep breath, and realize that the world will not stop revolving if I don't get it all done.  I think this one may be the toughest!

Killing the cat...all nine lives

As I was reading on Facebook the other day, my daughter's friend, the Dynamo, mentioned that she was stopped by someone on her way into class.  The person asked the Dynamo, in all seriousness, what she did with Sunny, her guide dog, when the Dynamo was in class. 

*blink*

Really?

So of course, being a smart ass, I joined in with several others of my questionable ilk and offered up some witty repartee that could've made for a quick response.  Her professor, actually, posted the "winning" retort by saying that Sunny had been helping her grade papers and tests, but had a bad habit of sexting in class.  I loved it.

It really got me thinking, though, about some of the dumb questions and assumptions that people have about any individual with a disability.  I've been asked why I still work, how I run when I use a cane (?!), why I don't "just get physical therapy" or "just have surgery" to fix the issue, and many more.  One of my favorite stories was when I had a clerk start speaking loudly and extremely slowly to me.  I was kind of surprised, and didn't say anything, but when she counted out my change coin by coin, dollar by dollar, I got a little wary.  After she was done, she patted my arm and said that I was very brave and strong, being out in the world by myself.  I looked her straight in the eye and told her that while I couldn't walk like most people, my cognitive functioning was quite intact, unlike hers apparently was.  She was offended, but guess what?  So was I.  Offended, insulted, and disgusted.  Why assume an inability to care for oneself simply due to a disability?

Now, there are those who believe that being asked the stupid questions presents an opportunity for education, and that the flippant, sarcastic comebacks are not just disrespectful but destructive to the "community bond" that people with disabilities try to forge with "normal" people.  OK, I'm going to take heat for this, but this is a place for honesty, so I'm not going to negate that now.  First, in my not-at-all humble opinion, the condescension and obnoxiously intrusive questions convey a whole lot more disrespect than using humor to diffuse a potentially angry situation. Second, who in the ever loving hell came up with the idea that it is somehow our responsibility to forge a relationship with strangers who clearly don't respect us? 

Maybe that seems unnecessarily harsh, but think about it.  People will come up to someone with a disability and ask very personal questions without hesitation; they don't do that to the average Joe Public on the street.  We are asked details about potentially traumatic events, we're asked to relive emotional struggles and to share our demons with strangers like they have some sort of right to know about them.  What gives anyone the right?  Don't get me wrong...when a little kid asks, "Why does she walk like that?" or "Why do you wear that?" or exclaims, "My grandma has a cane, too!  Are you old like her?" I don't even blink.  To me, that is the natural curiosity of a child coming through, and that, to me, truly is an opportunity for education.  And yes, adult humans are curious as well, but adults are supposed to be hardwired with a modicum of discretion to temper that curiosity.  Otherwise, instead of curious, they are perceived as merely intrusive and rude.

Next time you see someone in a wheelchair, with a guide dog, signing with a friend, or adapting in any other way, I implore you...stop and think.  The question you're about to ask could make you look like a total ass.  Consider that before you ask it!

Do you measure up? I sure don't.

Most people with a disability that affects movement deal with the concept of muscle atrophy on a daily basis.  Atrophy is basically the wasting away of muscle tissue, robbing the limb of the strength it needs for even the more basic functioning.

I've fought this lovely little phenomenon for most of my life, and for a long time, had it well under control.  We had a basic BowFlex at home (bought 10+ yrs ago!), and leg presses were a favorite warm up for me.  I could press the whole set, which was 310lbs, doing 50 reps without too much of a struggle.  Yes, I was using both legs, but I was using them almost equally.  The left leg is always the last second back-up if the knee gives, but the strength to move the weight was always coming from both sides.  However, after the MRSA destroyed my leg, I have found myself unable to recover the strength and muscle mass.  This, my friends, is a nearly constant source of frustration for me.

I've written before how I fail on a nearly daily basis to adhere to my "10 minutes of standing or walking out of any given hour" restriction.  Therefore, as I am standing and walking, I am using those muscles, correct?  So it would stand to reason that the muscle would not atrophy.  The measurements I took last night contradicted that assumption in a really big way.  Last weekend was a great example -- I walked all over the city of New Orleans, resting occasionally, using street cars for long treks, but make no mistake, I walked.  Despite the fact that I use a cane, and therefore do not walk quite evenly, there is no good reason that my muscles shouldn't have responded to the workouts they got.  But they didn't.

The key to measurement limits from my younger days and the orthopaedic surgeons that ruled them, was one inch on the quad and half an inch in the calf.  Any more than that, and I would receive a heated lecture about how I have to partner with them to rebuild and recover my knee, and how that muscle strength was imperative especially for people like me, whose knee joint was unstable enough to give way at any given time, without warning.  I could almost recite Dr. Richards' words to you by heart, including facial expressions and tonal inflections.  Now, don't get me wrong...everything he said was accurate.  I was always contrite, promising meekly to do better, and I would come back the next visit triumphant.

I'm not sure what made me do the measurements last night; I haven't done them in ages, simply because I just did not want to know.  But something made me get my tape measure out, and stretch out my legs on the bed.  I didn't even have to think about how far to go up or down, where to put the tape.  It all flowed back naturally as if I'd done it yesterday.  However, after I'd done the baseline set, and moved to the right leg, I was so stunned that I went back and redid them.  This time, I was more careful.  This time, I reasoned, I'd get a more accurate number and it wouldn't bring the tears to my eyes.

Nope.

The numbers didn't change.  Not. At. All.

Dammit.

Between my quads, there is a full two inch deficit, and between the calves, there is an inch and a quarter.  I could not wrap my head around how bad it was, especially when I do push my leg muscles.  I do force them to work, more than they are supposed to be forced!  What the hell would the numbers look like if I obeyed the 10 minute rule?  I cannot even fathom, and really?  I don't think I want to try.

So today, I fight the frustration and the resentment.  Today, I fight the sense of failure and futility.  Today, I fight just to remember what it was like when I could walk unassisted, carry things in two hands, and the myriad of other things I've lost. 

But today's fight may not be won on this battlefield.  This one might take more than I've got.