Least favorite day

It’s that time of year again: the one where people in my family tred lightly wondering how I’m going to react to the fact that it’s March 27.  Today is my least favorite day of the year.  It’s the one I would be fine with skipping over.  The one that could just fall off the calendar and I’d be ok.  It’s been 27 years of hating this day.  Well, maybe 26.  I don’t know that I actually hated it 27 years ago.

27 years ago I had my first major spine surgery.  It was the one that removed most of the tumor wreaking havoc on my spine and nervous system.  It was the one that preserved my ability to walk until August 13, 2013.  It was the one that preserved my bladder control (something I’m so lucky to still have!!). You’d think it’d be my favorite day, right?

27 years ago was also the day my grandpa died.  Yep, right in the middle of that surgery, my Poppy passed away.  We knew it was coming.  But it was still more than my 10 year old psyche could handle.  And thus, it became my least favorite day.

For nearly a decade I couldn’t talk about March 27 without crying.  Forget about even handling it well.  The day was miserable.

Last year I decided to do something different: I took my son on our first solo car trip to a far destination.  We drove two hours to the grave site of my Poppy to pay our respects.  It was a beautiful thing to be able to tell my one year old stories about his great-grandpa.  And it was beautiful to see him stand over my Poppy’s grave so serenely.  It’s a memory that I will cherish forever.

henry and Poppy

This year, I woke up to a beautiful clear morning in my happy place (my favorite little town in Wyoming in our perfect little cabin).  I spent some time reading my Bible which cleared my head.  (Note: this is not something I often- or ever- do.  I haven’t read the Bible since I took a bible as literature class in college.  In fact, I gave up religion 27 years ago when I figured there couldn’t be a God who would put me through pain AND take my grandpa.  But, then when I became paralyzed, I found my way back to the Catholic church.  And while I’m grateful that it brought me the comfort I needed when I needed it most after becoming paralyzed, I don’t try to push my beliefs on anyone. I have friends of all faiths, or no faith at all.)  Then my little bubs and I went outside with the dogs while the hubs brought in firewood.  After a few minutes, he joined us and we went on a hike up the hill behind our cabin.  It was such a fun, random adventure.  The hubs also took us into town and bought me a piece of my favorite pie which I am devouring in about two hours (yes, I am counting down to dessert time!!!).

hiking 3-27-18

 

So, March 27 is still my least favorite day.  I could still really do without it, because it still makes me sad.  But, I think that my Poppy is happy looking down and seeing that today I chose to spend it in my favorite place in the world with my two favorite guys in the world.

henry and daddy hiking 3-27-18

 

And if you’d like to see what I read this morning and what really spoke to me, it’s Psalm 30:

Psalm 30

 

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.

On his level

Sometimes it’s hard to think of positives about being in a wheelchair.  There’s clearly all the old jokes (i.e. the good parking, not having to stand in long lines, etc.).  But real positives, it’s hard.  I don’t fall nearly as often, so that’s definitely a big positive.  My knees send me a Christmas card every year since I became paralyzed as a show of gratitude.

But this morning, it hit me.  I’m on the same level as my kid.  Literally.  (Sometimes figuratively too cause I have a really juvenile sense of humor and a weird obsession with PeeWee’s Playhouse.)  Because I am about 3 feet tall when I’m in my chair, I’m much closer to toddler height than all the other adults in his life.  It’s easier for him to see some of the things that I am doing than it is for him to observe other adults.  This morning he was watching as I brushed my teeth and he grabbed his own toothbrush and started brushing too.  (His brushing is really just putting his toothbrush in his mouth for 3 seconds and then clapping jubilantly over what a good boy thing he did.)  But when he stopped, he still watched as I brushed.  So I exaggeratingly showed him how to brush all the teeth.  He was enthralled.  The hubs was brushing his teeth at the same time, but the hubs is 3 feet taller than Little Mister.  It’s not as easy to see what dad is doing as what mom is doing.

When I talk to him or try to teach him something, I don’t have to bend over or crouch down.  I’m literally on his level.  I think that’s a really cool thing now that his baby mind is learning nonstop.

So there you go: a way in which being a parent in a wheelchair is not a terrible thing!

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.

Hell on Wheels

I have a friend who is a fellow defense attorney [I know, I know…”friend” and “attorney” don’t usually belong in the same sentence. But he’s actually pretty cool.]  who has restarted a group email list for all of the defense attorneys in the area. The purpose is to support each other through problems and through victories. My friend, let’s call him Snappy Dresser (because he is always very impeccably dressed) puts a ton of work into his emails. When someone has a victory, he doesnt just say “so and so won such and such case.” The emails involve a superhero-esque name and backstory which turn into the saga of what great feat was accomplished. Yes, he could probably use a hobby or a dog, but I actually enjoy reading his emails.

So, the reason for my blog. I had a small victory in court recently where I got a case dismissed. Nothing huge, but he wanted to write it up. He told me to choose my Nickname and sent me a list of really great heroic names. I liked “Black widow”. I liked “the Assassin” [mostly because it says “ass” twice and I have the humor of a 12 year old boy.] I liked “Rogue” mostly because it’s applicable. But none screamed “ME!”

I sent him a text. “Can I add a new one? Hell on Wheels.” I received a text back. “Hell on Wheels. Seriously?” Of course I was serious! I appreciate a good, strong wheelchair reference or joke whenever possible! He called me. He was worried people would think he came up with it and give him a hard time. I convinced him it was a good idea. He said he was forwarding any emails to me to handle if people gave him a hard time about it.

The email went out with my new nickname solidified in black and white, and with the caveat that I chose the name. And I am so okay with all of that! Personally, I think it’s a strong, fierce name. And as people who really know me well would agree, it’s pretty fitting!