Kick in the pants

I had a conversation with my mother yesterday where she compared me to a mule.  (Not the best animal to be compared to, but definitely not the worst.  Elephant.  Whale.  Those would be worse.)  The reason for the comparison was her observation that I am a stubborn a$$.  As she put it, when I make my mind up about something, I sink my teeth in and don’t let go, even if I’m wrong.  Dear mom:  I’m a defense attorney.  The fact that I’m stubborn doesn’t shock anyone! Love, me.

She brought this up because apparently I hadn’t been working as hard as I should be lately.  I haven’t been to PT in months.  I have been going to the gym off and on the past couple of weeks.  But, not nearly as much as I should be.  And my diet is…lacking.  (Though, if they’ve recently added pizza and fast food to the food pyramid, I’d be doing great!)  But, when I went to see my neurosurgeon a few months ago, he wasn’t exactly promising about my future on two legs.  What I call “acclimating” to my new life, my mom calls “giving up”.

Cut to last Friday.  I received a call from one of my favorite people.  D was my main care taker when I was in the hospital.  And even though that was almost 2 years ago, he still calls and texts me to check-in to see how I’m doing.  Here is how our conversation went on Friday.

D: How’s physical therapy going?

Me: Eh, I’m not really going.

D: What?! Why?

Me: Because my doctor basically said I won’t walk again.

D: And he’s God?  What happened to my friend from the hospital who kept pushing?  Remember I’d be off for a few days and I’d come back and you’d be like “D!  Look what I can do now!  I don’t need you to do such and such.”

Me: Well, it’s hard.  And I’ve plateaued.  There haven’t been any changes lately.

D: So?  That means you give up?

When someone (other than your mother whose job is to nag you) puts it in your face like that, it’s kind of hard to ignore.  The conversation ended with me promising to get my butt in gear.

Now cut to this past Monday.  I get a call from D around noon.

Me: Hey D!

D: What exercise are you doing today?

Me: Well, I’m actually on my way to the gym now.

D: And walking?

Me: I’ll be tired after the gym, so…

D: So?!

Me: Ok, I will go to the gym, and I can do some standing, but I can’t promise walking, because I don’t know when the hubs will be home to help me.

D: Ok.  I’ll call you on Wednesday.  [click]

And I’m going on record here to say that I did go to the gym AND stand on Monday, and yesterday I went to the pool and pushed it doing laps.  I’m super sore today, but motivated to keep going.  And I took a picture of the standing for those naysayers who won’t take my word for it.

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Now, I’m pretty sure that my mom is paying D to harass me.  And if she isn’t, she probably should be, cause he’s making her life much more enjoyable.  I’d argue back with my mom.  But D gives no room for argument.  When you’re a big, muscly dude who stands well over 6 feet tall, I don’t argue back as much.  And, the fact that he cares enough to check in and motivate me really means a lot to me.  It’s funny how you never know when you’re going to meet someone in life and how they will inspire, motivate and help you through life.  But, I’m really glad I met D and that he does care enough to keep giving me a kick in the pants to get my stubborn a$$ moving!

Fighting vanity

I’m at the point in my recovery where I’m hyper critical of things that I shouldn’t be concerned with exactly.  Though, I think the girly-girl in me (Ok mom, stop laughing.  I’m not always a tomboy.) always focuses on things that aren’t important.  When I was in the hospital in 2006, they wanted me to start walking and I was mortified to think that I hadn’t shaved my legs in 2 weeks.  I’m Italian.  That’s not pretty.  The night before my walking therapy was to begin, my sister went out and bought 3 different razors (she wanted to be sure that she got one that I liked) and actually shaved my legs for me.  How’s that for sisterly love??  But, even though I should have been focused on the bigger picture of walking, I was worried about a more superficial aspect.  I am humble enough to admit that that’s a shortcoming.

But, it can also be a good thing.  For example, after that same hospital stay, I cut my hair to a little bob (it had been almost down to my waist) and donated it to Locks of Love.  I thought that as vain as I was being in my recovery, I couldn’t imagine a person struggling with cancer and hair loss who felt bad because they didn’t have hair.  (I have such thick hair they probably could have made 2 wigs out of the hair that I donated!)  So I tried to turn the vanity into something positive for someone else.

I’m going into all of that to explain that I look at this video that was taking this morning at PT and all I think is how pushing your shoulders up to support body weight is probably one of the most unflattering things that a person can do!  I should be looking at the fact that my steps are the best steps I’ve taken since August 2013.  Or the fact that I went 20 feet farther than last week and am at 250 feet or so.  Or the fact that I promised Drill Sergeant Jr. (she’s the one with me in the video) that I would walk two full laps with no break by her last day in the clinic (which I didn’t realize was next week- good thing I love a challenge!)  But nope.  I’m thinking how I don’t want to share this video because it’s so unflattering.  But, I’m dedicated to sharing my recovery, so here it is.  Don’t judge.

Plateaus (or beating good enough)

My doctors have always told me to expect plateaus when it comes to my recovery. They said that it’s completely normal to have upward changes in my ability and then for a while I’ll flatten out and stay there for a while before starting to gain again. They said this as a way of encouragement. They didn’t want me to be sad or disheartened when I didn’t see improvements. They knew how I live for improvements, no matter how miniscule. I monitor my abilities (or lack thereof) so closely that I am usually able to perceive any change, no matter how slight. It’s those changes that motivate me to keep trying.

What my doctors didn’t realize is that I am lazy. Give me any excuse to not have to try, and I will take it. Yes, I want to walk. More than anything in the whole world I want to walk (mostly because I want to drive and regain normality). But, I’m also very lazy. I am still hoping that I will just wake up one day fixed. Afterall, I went to sleep and woke up broken. Why can’t it work in reverse?

But my doctors gave me an out. A reason to not push it. I would stand for 35 minutes (a target I hit 2 or 3 weeks ago) and then I sit down. Blame it on the plateau. I’m not doing any longer because there’s a plateau. I walked to a spare room in my house, about 50 or 60 feet (Note to self: measure so I know, cause that’s important!) and haven’t walked any further. Plateau again.

Somehow, plateau became synonymous with “good enough”. Am I saying there aren’t plateaus? No way. There are for sure plateaus. There are times that I try my absolute 110% hardest and I can’t do any better. But, if I’m not trying my hardest, and settling for good enough, then it’s not a plateau. My mom pointed this out in her honest-in-a-way-that-only-my-mother-can-be way. She told me the other day that I was giving up. And why was I not trying harder. I met this comment with my normal eye roll, shrug and “You don’t understand mom!” (Yes, I do revert to a twelve year old when I have no real rational argument.) She replied “No, I don’t understand. But I see what’s going on.”

This conversation started because my dad’s birthday is coming up. His birthday request is to have me to come to their house- a place I haven’t been in 10 months, because there are 4 stairs to get to the patio on the side of the house. He’s only asking that I get to the patio, because inside there are much more steps that there’s no way I could conquer. He’s asking for me to try to figure out the 4 steps. And the narrow bathroom. I think I owe it to the man to try to figure out those problems. This started the conversation with “I can’t.” My mom said that she knew this request by my dad would be like a carrot on a stick in front of a horse. At first I resented that comment because it almost seems like I want to be in this wheelchair or like I’m not trying. But, as my stubbornness left me, I was forced to realize she was right. (I HATE ADMITTING THAT!!) I had given myself solace in plateau when really I was hiding in good enough.

So this weekend, with the metaphorical dangling carrot in front of me, I pushed myself. I have 2 things I have to master: bathroom and stairs. I focused on bathroom this weekend. Because the doorway is 22 inches and my wheelchair is almost double that, I’m going to have to walk. So the hubs and I practiced. I strapped on my braces, wheeled to the doorway of the bathroom, got up on my walker and went for it. I walked the 7 or so feet to the toilet, turned around and managed to sit. When I toilet is only 16 inches off the ground, and you have pretty much no leg control, it’s hard to sit gracefully. Our biggest concern was to try to go easily enough to not shatter the porcelain. But I did it. Using as much control as I could muster, and relying a lot on my arms, I sat. It was the first time I sat on a toilet from a standing position in 9 and a half months. First time I sat without my wheelchair being directly next to me. That is a weird thing. But also a completely motivating thing! Inspiring even! But, before I could revel in that, I had to practice standing up. Standing from 16 inches with no leg control is even harder. The hubs held the walker and I tried to lift myself. Attempt 1. Fail. Attempt 2. Fail. Attempt 3. Fail. My arms just weren’t strong enough to get me up high enough to swing my legs under me. I was trying to contain my frustration. The hubs asked if I wanted my wheelchair. Every part of my brain was screaming “YES!!!” But, then, that damn dangling carrot of my dad’s party was there in front of my eyes. I had to do this. Attempt 4. Success! I was finally able to figure out how to maneuver myself so I could get halfway, muster some energy for a second push into all the way. And I did it! And then, just to push it, I walked all the way back out to the family room (about 50-60 feet). During the walk back, I didn’t even need to sit once. I took two little rest breaks, but was able to stand the whole time. Another first! I felt like Rocky at the top of those steps doing a victory dance!

So, I still have those pesky stairs to figure out. But, I figure worst case, I can always lower to the ground and scoot up the stairs on my bottom. Or I can be carried in my wheelchair like an empress being carried in a chariot. That’s the easier part to figure out. And that’s the task for next weekend. Because now I have realized that I can’t let good enough and plateau become the same thing. And I need to push as much as is humanly possible because the plateaus will come naturally. I can’t fabricate them out of laziness if I’m truly dedicated to getting back on my feet.  And I have to remember that the euphoric high that comes along with accomplishing new goals  is better than giving into (or fabricating) plateaus and good enough!

Bionic legs

Yesterday, I received a gift.  Ok, well, I paid nearly $3000 for this gift, but it’s a gift nonetheless.  I got my bionic legs.  These legs were custom made by this amazing prosthesis guy near my house.  My mom and I went to his office two weeks ago.  He put molding stuff on my legs.  It was similar to the stuff they use to make a cast when you break a limb.  The molds went all the way up to my hip.  Very awkward.

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He told me they would take about a week and a half to make them.  He wasn’t lying.  At exactly a week and a half, I got a call that they were ready.  We made an appointment that coincided with physical therapy, so I could pick them up and then take them exactly to 5 O’Clock Shadow (my physical therapist’s new name, since he always sports a very well manicured stubbly beard) to show me how to use them well.

I showed up at the office, a little nervous.  I’d been hanging my hopes on these braces.  In my mind, these would be a game changer.  Once I get braced up, I’d have no more excuses.  But, what if they didn’t work right?  What if my legs still couldn’t hold me up or work?  Rolling into the office, I was so nervous I was almost in tears.  Thank goodness for large sunglasses and beautiful Southern California weather that necessitates the wearing of said glasses!

Then I saw the braces.  They were awesome!

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The braces were put on me, as it’s kind of awkward to do it myself.  Granted, I will learn and get better.  But for the first time, they were put on my.  I stood up.  It was amazing!  I stood better than I had in months.  My legs felt straight.  My back felt straight.  I decided to go for it, and took off walking along the parallel bars.

Obviously, I got tuckered out pretty early on!  But it was a great start.  The prosthesis guy said that I had more determination than most people.  That made me happy.  I’m a sucker for positive feedback!  I then went to PT with new legs in hand.  5 O’Clock Shadow seemed happy with them.  We spent the whole session playing with them.  He’s going to try me on arm crutches as well as the walker to see what I do better on.  He said I’d have more independence with arm crutches.  So, it seems like a no-brainer to me!  Harder but more mobility seems like the way to go!  I do love a good challenge anyway.

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5 O’Clock told me to practice standing at home this weekend.  He also told us to get a gait belt for if we practice walking.  The hubs could follow behind me with my wheelchair and grab on to the gait belt if I started to fall.  We obviously listened:

If you’ll notice, my wheelchair is far behind me, and the hubs is in front of me filming.  Oh, and no gait belt.  Whoops.

Now, I am more motivated than ever to walk!  It’s going to be hard.  But, what about this journey hasn’t been hard?  But at least I’m feeling progress.  And that speaks volumes!  And my new mini-goal (cause my mom said I have to have one) is to walk into my neurosurgeon’s office next time I see him in July.  I think he’ll be awfully stoked to see me cruising in.  I know I’ll be stoked!

I also know that with my new bionic legs, there’s no stopping me now!