Progression Regression

The hardest thing about my broken knee has been not being able to use it for several months now.   Part of the reason I started using a personal trainer was to try to maintain what little muscle use I had left in my legs.  My biggest fear is atrophy. (OK, that’s not my biggest fear.  My biggest fear is losing my bladder control because I’m a lucky paraplegic who still has that.  But talking about pee = gross.)  And when I was training with Gun Show, we actually got my legs stronger.  After some crazy hard work, I was able to lift my left leg off the floor several inches.  And it progressively got better until it was almost straight out.

But then my knee broke.  And then I went to the doctor.  And then my mean amazingly knowledgeable doctor said absolutely no activity while it’s healing.  And then I followed-up in December and he said it’s not healing as well as he hoped and since we’re trying to avoid surgery, absolutely no use until my next appointment.  In. February.  Not even early February.  Like, the last week of February.  So, by the time I get to the appointment, it will have been four months of no activity.

Do you know how short of a time it takes for a muscle to atrophy from non-use?  OK, well I don’t actually know either.  But, it’s not a long time.  Today I met with a general practice doctor and I said “I’m not supposed to use it, but since you’re my doctor you need to see what I can do.  And one time won’t really hurt anyway.” (Yes, I sounded like a drug pusher.)  And then I tried to lift my leg.

And I couldn’t.

And then I tried not to cry.

All of my really awful, hard, painful work out the window.  Will it come back?  I don’t know.  I’m not good with muscles or movement or working out.  No, seriously, I’m awful at working out.  But I’m so worried that all my hard work was in vain (and the money I spent on the training).  It was always a fun trick to show people what I could do, and now I can’t do anything.  I really do hope that my knee is healing, cause I’ll be especially PO-ed if my legs atrophy AND I have to have surgery.

knee brace

Curious? Ask!

I’ve noticed something funny lately.  I broke my knee [that’s not the funny part] and my doctor has had me wear this huge, bulky knee stabilizing brace. We’re trying to avoid surgery and a full cast would make my life insanely more difficult than it already it.  [Still not the funny part.]  Since I’ve had the brace on for the past five weeks, people are constantly asking me what happened.  Typical conversation:

Person: What happened to your knee?

Me: Oh, I broke it.

Person: [shocked face] How?!

Me: You know, I have no idea.

Person: …..

Me: ……

Person: ….

Me: [awkwardly laughing] It’s really OK!  We’re hoping it will heal.

Person: So you’re in the chair until it heals?

Me: [looking at the completely tore up, scuffed paint nature of my overly expensive customized wheelchair] ….No…. I was already a paraplegic.

Person: Oh….

 

So here’s why this is funny to me.  People never asked why I was in the wheelchair before.  Well, that’s not true.  Some times people did but they were generally older (like 80’s, 90’s with no inner monologue or filter) or kids (who asked what was wrong with me).  The conversations were fewer and far between than they are now.

This leads me to my new conclusions: something about a more common brace is comforting to people. They have seen braces throughout their lives, probably used one at some point or know someone who has.  Wheelchairs are not as common or comfortable for people.  They are curious and probably want to know why I’m in the chair, but don’t know how to ask.  We have become such a PC world that people are uncomfortable asking questions anymore.  And how does that do anything to assist communication?  Understanding?  Bridging gaps?  It doesn’t!  On one of the first days of school for my kid, a totally beautiful young hipster mom saw me getting into my car.  She rushed over and said “Is it offensive if I ask you if you need help?”  The answer is “no!”  Don’t ever feel like you’re offending me if you offer assistance.  I think it’s so nice.  (But, don’t keep persisting if I say I’m OK and don’t need help.)

The point of this rambling mess is: ask questions!  If you want to know why I’m in the chair, ask.  If you want to know how I drive, ask.  If you want to know what I struggle with, ask.  If you want to know how it feels when I can’t go places because of inaccessibility, ask.  Trust me when I say that if it’s something too personal, I’ll let you know and won’t answer.  But for the most part, I’m an open book [hence the blog!] and want to answer your questions.

I think in this day and age we need more conversations, not less.

Screw You, Justin Timberlake!

Throughout my life I have successfully managed to not become a Justin Timberlake fan.  Sometimes it was difficult, but I persisted in my determination.  When NSync first came out and were mega-popular, I was safe in my wannabe punk phase.  Yeah, no thanks NSync and JT with your curly hair, I’m crushing on Tim Armstrong in all his Rancidy, tattooey hotness!  When JT and Britney broke up I was Team Brit, #obviously.  I learned all about Girl Power from the Spice Girls (OK, so maybe I wasn’t super secure in my punk phase) and sided with her, of course!   There were some times when I was tempted to become a Timbergroupie.  Some of the movies he did were pretty funny.  I mean, he was in Shrek the Third.  (I realize that I keep losing punkness with each line I type.)  You’d have to have no soul to not appreciate the acting in the Shrek franchise.  And the skits on SNL.  D*%k in a Box?!  So, maybe he’s not terrible, but I’m still too cool to say that I’m a fan of his.  I was trying to remain steadfast in my non-boy-band-groupie status.  Or former boy band status.  He brought sexy back (or so he claimed) and I was able to snicker that sexy never left and who the heck did this guy think he was.  My friends would laugh.  [Confession: I somehow know all the words to the song so *maybe* I listened to it once or twice secretly and ashamedly.]  And when he started dating Jessica Biel, I realized I hated him more because she is so cool and so beautiful and this former boy-bander is going to ruin her!  I went to high school with a girl who played soccer with Ms. Biel and would actually say how cool she was.  (I definitely did not watch 7th Heaven, though I think that was because it conflicted with a show I did watch- Maybe Gilmore Girls? I don’t recall- and [insert old person voice here] back in my day we didn’t have DVR.  We made the tough choices of choosing one show over another and being loyal!)  But I still thought she was too cool for him.  And then they got married and maybe he isn’t that bad if she’s sticking it out with him.  And more SNL skits came out which I had to admit were funny.  “Give it on up to Homelessville!” So eventually I became more neutral about him.  But, I refused to be on the bandwagon.

Cut to last week.  And I bought a pair of jeans without looking at the label.  And now I have to admit that my biggest fear has come true: I am a Justin Timberlake fan!  Isn’t that terrible?  Decades of avoiding it, but it happened anyway.  But William Rast (his label for those of you who are less JT-ey than I am) has created a stupidly dumb (read: awesome) product.  I love cute jeans.  But, in my constantly seated life, they’re usually lost on me.  Most designers focus on making butts look good and putting detailing on the pockets.  That does me about negative 17% good.  So when I saw these jeans on line with the narrow ankle that wouldn’t make my paralyzed legs look awful and detailing on the side of the leg I was eager.  When I tried them on, they had the perfect amount of stretch to fit nicely on my awkward body.  And they weren’t low rise.  I like to actually pull my pants up and not have perma-plumbers-crack since I’m always sitting.

I got a million and three compliments on them when I wore them over the weekend.

So screw you, Justin Timberlake and your glorious William Rast brand.  I’m now a self-proclaimed Timberlaker.

Flamenco dancing

I’m never going to Flamenco dance*. I had that realization yesterday as I was driving down the street.  I was listening to Rusted Root on the radio, which somehow made me think about the time I saw Ozomatli play a free show, which then led me to thinking about Spanish guitar, which led to flamenco.  This thought process took maybe 45 seconds start to finish.

And that’s when it hit me.  I’ll never flamenco dance.  Now, before you start wondering if I was big on that PP (pre-paralysis) (also, are you wondering why I used an abbreviation, when I immediately wrote it out?  I’m wondering that myself….), the answer is: not really.  It’s not like I had a huge bucket list and flamenco dancing was on it. I’ve always appreciated the beautiful dance.  It’s strong and powerful and seductive without being an outright sexy (read: gyrating) style.  It’s beautiful and poetic.  And I’ll never do it.

To answer another burning question, I’ve never really been a good dancer in general.  I probably should have gotten into line dancing when I had the chance, because that was about my ability level.  I’m good at memorization, slightly lacking in rhythm.  Most of my dancing occurred in my apartment when I was single, and consisted of twirling to 70’s greats like Joni Mitchell or Janis Joplin.  Twirling just seemed to fit the la-de-da, la-de-da-da’s of Me and Bobbyb McGee.  I was also known to mosh around to Rancid.  But something with technique and skill?  That was not in my wheelhouse.

But now I’ll never be able to try.

And before you get all “Stop being a Debbie Downer” on me, realize that I’m overly positive about my situation.  There is so much I can do.  And there is so much that I do do [12 year old sense of humor break: excuse me while I laugh at that for a few seconds].  And I’m grateful for all of that.

It’s just a sad and shocking realization when something is irrevocably taken off the table.

 

While writing this, my snooping husband looked over my shoulder and asked “What’s Flamerco dancing?”  I responded “Um, you mean flamenco?”  He replied “You’re far away, I couldn’t read it.  What is flamenco dancing?”  So, I realized that maybe not everyone knows what flamenco dancing is.  You know, people who have been living under a rock.  So I’ve added a video of a beautiful dance.  You’re welcome.

Don’t be so hard on yourself

Life is hard.  Like, really, really hard.  Work, bills, loss, stress…it all adds up.  Life is also beautiful.  Friends, family, kind deeds, thoughtful words, the beauty of a sunset.  It can all be beautiful.  It’s not one or the other.  It’s not so black and white.  But sometimes, it’s hard to see that.  When you’re on a high it’s hard to remember that life can have it’s downs.  And when you’re down, it’s hard to think you’ll ever get back to a happy, or even normal, place.

I try to be a positive person.  I am good at finding silver linings and positive twists on things.  And I try to share that positivity, both on this blog and with people I know.  But it’s also really easy for me to go to a negative place.  You know, the place that’s filled with “I can’ts” and “I miss” and all the other things that one should try to keep at bay.  But, why should you keep those negative thoughts away?  If you ignore the negative I think they creep back up and overwhelm you.  And it’s easier to swim in the shallow end of a pool than in a tsunami.  (I don’t know if that exactly made sense, but I think you’re getting what I’m saying.)

Loss of mobility is hard to deal with.  Yes, I can adapt (and have) pretty well.  But it’s still tough.  There are things I can’t do anymore.  That’s something I have accepted.  I do my best to find a positive side to things I can’t do (i.e. I can’t walk, but at least I don’t fall and scrape my knees up like I used to) when I can.  But there are still times when the sadness creeps up and I get emotional.  And then I look at everything I can do and recover from the sadness.

Recently I wrote an article for a magazine and I tried to cover this very topic in it.  I talked about how the first time my son went in a pool, I wasn’t able to be in it with him.  We were at my aunt’s house for a family party and there is no lift at her house.  My husband and mom took my son in the pool and baby boy had a blast!  But it was really, really hard for me to not be a part of that.  Sure, I could have gotten in the pool (you know, gravity) but it would have been hard to get out (again, gravity).  And then it would have been about me and my safety which would have taken away from the Little Mister’s first pool experience.  In the article I wrote about how sometimes you just have to accept that there are some things you can’t do and find ways to turn them into a positive.  In the pool example, I mentioned that I took one million photos of the Little Mister in the pool to commemorate his first swim.  If I had been in the pool we would have missed out on those photos.  See, positive outlook!  I was still super sad, but at least there was some positivity that allowed me to move on and not be overwhelmed.

The editor told me that I was being negative and said something along the lines of “where is your can-do attitude?! There are public pools with lifts that you can use.” That wasn’t the point.  I do use public pools with lifts.  I love swimming.  I’m part mermaid.  And I appreciate that the editor wants to portray a positive image.  But the point is that I was in a place that didn’t have a lift and I missed out and I was sad.  But I dealt with it and moved on.

And I guess the point of this blog is that if all people do is portray positivity it makes the people going through hard times feel alone.  Or misunderstood.  Or unrelateable.  We all have down days.  We all have things that hit us the wrong way and make us sad.  It’s human nature.  And when you have a disability there are things that will come up that you can’t do that will make you sad.  And yes, there are ways to adapt.  But sometimes that isn’t an option.  And to ignore this publicly is to make others feel that they are all alone.  I’m here to say that you are not alone.  We all struggle at times.  We all get down at times.  And, even when you’re in the thick of it and feel that life is going to overwhelm you, it will get better.

And acknowledging that isn’t negative. It’s real.

Wyoming Wheelchair Accessible (is sometimes not so much)

It’s funny how different people perceive “wheelchair accessible”.  In California, people are quick to not label things in that manner because they don’t want to be sued.  (Ok, I don’t know if that’s entirely true.  What I do know is that California is too litigious and people want easy dollars.)  In Wyoming, it’s the opposite.  Blue curbs have no ramps adjoining them.  It’s like “Hey, we gave you the space designated.  Figure out the rest on your own.”  It’s just a different mindset up here.  People are tough.  They’re resilient.  Where I live in California, you have to fight for a handicapped parking space because every person over 72 has a placard and thinks that old = handicapped.  In Wyoming, cowboys are farming into their 90’s.  “I don’t need no stinking handicapped spot!” is the mentality of every weathered cowboy and nimble old biddy.  They’re tough.  They’re good people.

While I do love that mentality (because I like to think that I am a pretty tough chick) it does sometimes give me some concern.  For example, we rented a cabin for our stay.  We like to have a home base, a place where our dogs feel at home.  They’re not really hotel dogs because they like to bark at noises.  So cabins are good for us.  The cabin we rented didn’t have a picture of the front entry way, but the owner assured me that there was only a little lip that I could easily jump.  The rest of the house was easy access.  We were still going to bring my ramps, just in case.  Unless I can see that there are no steps, I get uneasy.  The owner told the hubs that they built a ramp for me to the front door.  (In addition to being tough, the people in Wyoming are so super nice!) The owners of the cabin we rented last year also built me a ramp.  (The people in Wyoming are also super handy.)

Cabin

When we got to the cabin, we saw the ramp.  It was really nice and sturdy.  I’m also glad they built it, because it was more than just a lip that I could jump.  It was a full on step that would have been pretty difficult.  The cabin was really nice.  The living room, dining room and kitchen were all very open and easy for me to get around with.  If the cabin had been only those rooms, then yes, I would agree that it was wheelchair accessible.

However, cabins are more than just the common area.  They’re also comprised of bedrooms and bathrooms.  [Do you see where I am going with this?]  I tried to get into the master bedroom.  I didn’t fit through the sliding glass doors leading to it.  Ruh-roh.  That’s OK!  There are 2 other bedrooms! I thought to myself.  Or, possibly said it outloud to the hubs, trying to reassure him.  I tried one of the other bedroom doors and it was easy to get through.  Problem solved!

Or, was it?  Let’s check out the 2nd bathroom, where the shower is.  Awesome…the door is about 2 inches too small for my wheelchair to get through.  So, if this bathroom is too small and I can’t get into the master, how the heck am I going to go to the bathroom?!  The hubs and one of our friends who had come up with us decided to try taking the sliding door into the master off of the track.  With the door gone, I was now able to get into the master bedroom.  (We just had to hope that the hubs could get it back on by himself cause our friends were only here for 1 week.)  Next came the master bathroom door test.  Score!  I can fit into that bathroom!  Everything worked out!

Or had it?  The master bathroom didn’t have a shower.  Only a tub.  A big, deep, jetted tub.  How the heck am I supposed to use that?!  I can’t fit into the other bathroom with the shower.  And this bathroom only has a tub.  So…my options were to either not shower for a month or channel my inner Wyoming resilience and figure it out.  Getting into the tub wasn’t an issue.  I’m able to transfer to the ledge, put my legs over and lower myself in.  (Luckily I have great upper body strength.  Otherwise, it wouldn’t have worked.)  Getting out is where the issue lies.  I had to prop up on my knees, hoist myself over the ledge (where I felt like I was going to fall head first into the toilet), then twist around to my back and sit up.  It’s so awkward and so hard.  But, I was able to do it.  (Again, so glad that I have upper body strength!)  (Oh, while taking a bath is nice, the tub is so big that you can’t even fill it halfway because the hot water runs out.  And to wash my hair, I feel like an original homesteader who has to use a bucket to pour water over their head.  When I get home, I’m taking an hour long shower just to enjoy the ease of it all.  Sorry California drought.)

While I’m able to figure it all out with minimal some complaining, the point is that I did figure it out.  I usually don’t mind when things are an inconvenience for me, because I figure such is life.  I hate being an inconvenience on other people though.  Case in point: we are actually sleeping in one of the spare rooms because the bed in the master is also too high for me to get into alone and the hubs had to hoist me up into it.  Not bad when we go to bed.  But, when I have to go to the restroom at 1am and then wake him up to get back into bed?  That’s an inconvenience.  Mind you, he doesn’t complain.  He helps me with everything very willingly.  But, I still feel bad.  (Last year’s cabin was the same, so I always ended up sleeping on the couch after my early morning bathroom break.  I suppose I could have done that this year too, but it was just easier to switch rooms.)

The other point is that just because someone says a place is wheelchair accessible doesn’t mean it is, because until you’re actually having to navigate in a chair, you really don’t know if things are all that accessible.  Until I was in the chair, I wouldn’t have thought of some of these problems.  Now they’re obstacles that I can’t avoid and am forced to tackle.  At least I try to do it with humor, because what other option do I have?

Old legs, new tricks

I hit a major plateau in my paralysis recovery.  Or, rather, the plateau was in my mental state regarding my recovery.  I became rather complacent in my wheeled life and kind of gave up on trying to get stronger.  I focused on getting better in my wheelchair.  If this is my life, then I need to be as good as possible in my wheelchair.  But, why can’t I do both?  Why can’t I be good in my chair but also still try to get out of it?  I give credit to going to the gym for helping me reach this new revelation.  The fact that I am getting stronger and getting pushed beyond where I ever thought I could go has made me more open to trying more things.  I’m still a big whiner and really have to be forced into new things, but I’m more open to it than I was a year ago.

Today was one such day.  I’m on vacation in Wyoming.  The hubs and I joined a gym for the duration of our stay.  It’s a really nice little gym, though it does make me miss my gym and my gym friends back home.  But, for a temporary gym, this place is nice.  (I love that I’ve become a person who needs to belong to a gym while on vacation.  I literally NEVER thought I would be that person.  I was always more of a “eat crap cause you’re on vacation” vacationer.  But, now I don’t want to lose all the progress I’ve made.  And I feel gross when I don’t work out these days.  Who knew?!)  I was going to jump on the recumbent bike while here, because that’s something that I’ve been wanting to try.  But, the  one here isn’t as nice as the one in my gym back home.  And that’s something I want to try when I’m in my home gym on my home turf with my home girls (and guys).  Instead, I decided to try the leg press machine.  The hubs was all for me trying and encouraged me to jump on.  So I did.  And at first, I wasn’t able to do anything.  Go figure- my legs didn’t work.  But, then I realized I could push my knees down to straighten my legs and then my muscles kicked in and controlled my going back down.  This was the kind of situation where I wish that Gun Show or one of the other trainers had been around to make sure I was doing everything correctly and to reassure me that I was actually working. (I tend to second guess everything because I don’t want to get my hopes up.)  The hubs filmed me while I did a few reps.  Then he showed me the video and I promptly deleted it.  (Note to self: you make some really awful faces when exerting yourself.  Don’t do that.)  Then the hubs filmed a second round.  Towards the end, I was actually able to kind of push myself up.  A little.  The unfortunate thing is that the video cut out at that exact moment because someone called me.  But, the video caught the awesomeness of the rest of it.  I don’t know if it was really that awesome, but it felt awesome.  And I felt like I conquered something new.  I tried for a third round, but my legs were spent and I didn’t want to push it.

So, now I am super stoked about my new signs of ability and I can’t wait to try it again and push myself more.  Though, I’m worried about when I get back to my real gym, because GS has already promised to torture push me based on the video proof what I am able to do now.  Who knows what can happen?!