Struggle is not a dirty word!

When did struggle become a dirty word? It seems people are afraid to say they had to work hard for something, or that there were obstacles. Everyone is always competing for best and prancing around like some proud peacock. “I barely had to do homework and got 4.3 GPA.” “I don’t even have to work out to look this good.” “Everything in life just comes naturally to me.” [Insert condescending laugh here.]

But why is any of that something to brag about? And why do people think they can talk big and not have the world see right through it? What’s wrong with things not coming naturally? What’s wrong with falling? I would think the person who falls and picks themselves up only to finally succeed is the bigger person.

I admit my faults (and I have many!). I am terrible in math and had to have a tutor in high school to help me through Algebra II and Pre-calc. He barely hung in there through physics though. I played softball throughout my childhood and sucked at running, so I learned to hit the ball far, or to do a mean bunt, so I had a smidgeon of a chance to make it to first base. I took the LSAT twice to get a good enough score to make it into the law school where I really wanted to go. In that same vein, I took the bar twice. I’m not ashamed at that. I’m proud of myself for not completely falling apart when I didn’t pass the first time (despite almost every single one of my friends passing) and studying hard enough to make it through the second.

I feel like not admitting struggle or failure or hardship makes those experiences seem dirty. And that in turn, makes it harder on other people who aren’t perfect. They feel even worse about themselves if they screw up.

You may be wondering what brought along this rant. I’m just tired of looking to people for inspiration and them trying to pass everything off as easy. I watched a Youtube video of a girl folding up her wheelchair to put into her car so I could learn how to do it. She claims it was the first time and she glided right to her car, bing bang boom, put it away smoothly in 1 minute. The first time I tried, I ended up a sweaty, tire-marked, crying mess because it was frustratingly difficult. Now that I’ve been doing it for several weeks, I’ve gotten the hang of it, though I usually still end up sweaty and tire-marked. Those things seem unavoidable. But, I felt like I wasn’t good enough because I couldn’t do it as easily as her. And after my own experience, I question whether that really was her first time. If it was, kudos for her. But why phrase things that make other people feel bad if they can’t do it as well?

The one that really irks me is Amy Van Dyken-Rouen. I keep seeing interview with her where she claims that she’s not really had any mental breakdowns because she is just so happy to be alive. If that is true, then I am 100% genuinely happy for her. But, I 100% genuinely do not believe her. Being in a wheelchair sucks. Having your mobility taken away from you sucks. Learning how to function in a world meant for people on two legs sucks. Is it all bad? Of course not! But to not admit that it sucks is a bold faced lie!

I think that I am a pretty positive person. I think that I am able to look at situations and find the good in them, generally speaking. But to say that having your world ripped away and completely changed in a matter of moments is not hard just doesn’t seem believable. And pretending otherwise does a disservice to people who do struggle. When I was in the hospital, after spending a week in ICU, the psychiatrists came in and wanted to give me anti-depressants. It was normal for them for people to freak out. In fact, I think they were worried because I wasn’t depressed. (I tried to explain the difference between suckyness and depression, but all they ever responded with was “Pill?”) What worked for me was having the most amazing priest in the history of priests come by my room several times a week to let me just vent and cry. And then I would be ok and return back to physical therapy and my attempts at positivity.

When I got home from the hospital, adjusting to daily life was hard. Having to rely on care takers to get me places was hard. Having to rely on the hubs to help me shower or go out in public after he had a long day at work was hard. I felt like such a burden. And that is difficult for an independent person. That’s difficult for any kind of person. But I worked through it. Now that I have my independence back, I struggle with my wheelchair. And I still struggle through PT. And I still struggle with simple things like putting my pants on. A few weeks ago I fell to the floor in a public restroom while trying to transfer from the toilet to the chair. That was tough. (And so incredibly disgusting!!!! I’m still washing my hands just thinking about it!)

This isn’t a pity party. This is just meant to show that life isn’t easy. Life is full of struggles. And when people try to play it off like it’s easy for them, it makes the rest of us feel bad. That’s what creates depression. There’s no shame in admitting that things are hard. There’s no shame in saying “Yeah, that sucked, but I’m getting through it!” Maybe being truthful makes the better person.

One year later

One year ago today was the day that changed my life. Was it the worst day of my life? No. I still consider that to be March 27, 1991. That was the date of my first major back surgery, and the date that my grandpa died. Despite the fact that that surgery saved the ability for my young self to walk and regain a normal lifestyle, that was the worst day of my life. One year ago today, I lost the ability to walk. It sounds weird to phrase it that day, but I think it’s appropriate. It’s not gone completely, it’s just hiding somewhere within my inner being. According to 5 O’Clock Shadow, my nerves are like a congested freeway and we just need the lanes to open up for the traffic to go freely. It may seem weird when people break things down like that, but that’s where my comprehension level is. When it has to do with medical issues and my body, my brain turns into that of a 10 year old. I can wrap my mind around that. Other PTs try telling me in their scholarly fashion “nerves regenerate at 1 millimeter per month and so far you’re showing excellent growth patterns.” My eyes will glaze over. Freeways and traffic I can relate to! I grew up driving in the traffic mecca of the world: Los Angeles. Traffic I get.

I keep thinking back to last year. I wonder if there was a precise moment when my legs went limp. This time last year I was under the knife. Had it already happened? Was it happening around now, as I sit hear one year later, eating left over pasta from last night’s dinner and typing this blog? If the doctors had ended the surgery now, would I have been able to skip out of the hospital? It’s a weird thing to think about.

I don’t know how to feel today, other than amazed at the fact that it’s already been a year. Am I sad? Indifferent? Optimistic? I don’t know. Is it possible to be all of the above? Obviously I’m bummed. I don’t think anyone hopes that one day they’ll get to have a permanent seat from now on. Though, to be fair, that is a perk: I never have to worry about finding a place to sit in public. But am I that bummed? It’s not like life is over. I’ve still been able to work, although it definitely took some figuring out as far as logistical planning goes. But, I’ve actually had my best year yet at my firm. So that wasn’t impacted. And I just got back from an amazing two week road trip with the hubs (more on that to come in a different blog). So I can still travel. I’m still able to swim. I can drive now. I have a new wheelchair coming any day now, so I’ll be 100% independent. I plan on ordering an attachment for said new wheelchair which will turn my wheelchair into a tricycle, so I can go on walks easier with the hubs and the dogs. Then there’s the weekly pain in the butt sessions with 5 O’Clock Shadow which keep me hopeful for the future. And the therapy I do at home helps me keep fighting to be back on my feet. So, is life really so bad?

This past weekend was my baby niece’s second birthday party. I watched other people running around playing with her, or carrying her and that made me sad. There was a pony ride involved and I couldn’t help her. I can honestly say that not being able to keep up with her or do all the things other people can with her has been the hardest part of this whole thing. But then I look for the positive: at her birthday party, I was like home base. I was seated in my wheelchair in a particular area out of the way of all the playing children, and she knew I was there. She would periodically make her way over to me with a toy or a blanket.

Maybe being non-mobile isn’t a terrible thing. Maybe it’s taught me that it’s ok to sit down for a while. That you don’t always have to be moving about. It’s definitely taught me patience. I know how frustrated clients can be when it seems things are taking forever and they don’t understand why. It’s taught me empathy for that frustration. It’s taught me to be resourceful and how to figure things out. This past year has taught be to get over my stubbornness and to ask for help. That’s it’s ok to need people. It doesn’t make you weak to not be able to do something 100% on your own. It’s definitely taught me to trust and who I can trust. It’s taught me who is truly there for me and who my real friends are. It’s taught me to meet challenges. It’s taught me that gravity can be really fun when rolling down hill and the wind is in your face. It’s also taught me that gravity can be really scary when rolling down hill and the wind is in your face. It’s taught me that sometimes life just sucks for no apparent reason and you just have to keep rolling.

One year ago today was the day that changed my life forever. And I don’t think it was in a bad way.

recovery = roller coaster

The life of a paraplegic in recovery is a full on roller coaster.  Not the gentle Disneyland kind of roller coaster that is mostly plateau with a few dips and twirls here and there.  (Note:  This is not a dig at Disneyland.  I almost daily try to convince the hubs that we should be season pass holders.  I love it that much!)  It’s a roller coaster from a two-bit carnival: rickety, slow to start, not quite sure it will actually make it up the steep parts, not quite sure it will hold the weight on the down parts, nausea and tear invoking, thankful to be alive at the end kind of ride.

Illustrations:

Thursday was possibly the worst day of my post-hospital therapy yet.  I arrived at the session full of eagerness for the session ahead.  Ok, it was a 7:30am session, and I’m not a morning person.  Plus, the hubs had kept me up all night by his fog horn restoration snoring.  So, maybe it was destined to not be the greatest of sessions.  But, I was still eager.  My PT showed me this contraption she wanted me to work on.  It was part fork lift, part swing.  Ok, it was neither of those things, but that’s how I picture it in my head.  It’s a harness on this tall crane-like structure.  It’s supposed to hoist you up so you can walk.  Well, this one was broken.  Something about a dead battery.  But that didn’t stop my PT.  I pulled myself into a standing position from my wheelchair and they strapped me in.  They told me to let go with my hands.  That was fun.  I was suspended in mid-air as if on a swing in a playground.  I could handle this.  Then they told me to take steps.  My brain relayed the message to my legs, but my legs seemed to not be home.  It could be that the machine had me at a half-standing position with my legs bent at 75 degree angles.  It could be that my legs don’t work right.  Whatever it was, they wouldn’t move.  I told my PT this.  Her assistant PT then sat on the machine and moved my legs forward for me.  What was the point of this??  I can’t be in a swing with someone moving my legs for me all the time.  (Or can I??  That actually sounds kind of fun.  I could sit in the swing drinking mimosas while they so the work of moving my legs.  Note to self: rethink this whole contraption.  And buy orange juice.)  I proceeded to get really frustrated and was on the verge of leaving this session.  They unbuckled me from the machine by literally unbuckling the snaps and letting me slop down onto my wheelchair.  I then asked to use the normal support walker that I like to use.  We tried that.  I took a few steps and had to stop.  The assistant PT was still trying to move my legs and was more in my way than I needed her to be.  I’m stubborn and independent and like to do as much as humanly possible.  I sat down again, feeling the burn of tears I was fighting back in frustration.  I kindly (read: not sure of my exasperated tone) asked her to not move my legs and let me do it.  We tried one more time and I walked about 15 feet.  I was so tired from all the failed attempts that I couldn’t do more. And beyond frustrated.  Have I mentioned that I was frustrated?  My PT told me to not worry about the bad days, as she jumped up and down, did ballerina twirls and plies, the running man, and any other move that required moveable, workable legs.  Ok, she really didn’t do any of that.  She just stood there.  But when you’re frustrated that you can’t walk, someone even standing seems like an amazing and enviable feat.

Thursday afternoon I received a call that a session on Friday morning opened up.  I jumped at it.  I didn’t want to end my week on a bad note.  Friday morning I went (at a more reasonable time of 9:30) to the session with my folks who had come down to see me.  We strapped on the leg braces and I was ready to go.  We had my normal support walker and a path with no obstacles.  I need nothing else in life.  I popped up out of my wheelchair, steadied my legs below me and was off.  10 feet.  20 feet.  25 feet.  I got to the end of the path and had to make a turn.  I made the turn at a very wide angle.  The kind of wide turn like big rigs have to make which necessitate the signs on the side of their trucks to not try to sneak by on their right.  But I made the turn and kept going.  My PT was in front of me rolling backwards.  I informed her that there was an abandoned wheelchair behind her that she was going to roll into.  Another PT in the room thought I said I needed a wheelchair and, clearly freaked out that no one was going to help me, literally ran over to say I needed a wheelchair.  That was very nice of her.  But I didn’t need a rest.  I was ready to keep going.  They cleared the obstacle and I took another step.  Apparently a few seconds of stopping made my legs think it was break time.  They didn’t want to move.  Not exactly sure how long I went, but it was great (read: fast with big strides).  My PT then informed me that turns were actually harder than going straight.  Break time was over and I made the trip back.  Then came a turn.  My legs, remembering that they were just informed that turns were hard, decided they needed another break.  I firmly believe that ignorance is bliss.  If I know something is hard, I will dwell on it.  “Mental block” is my middle name.  But, I made it back to the starting point, and probably did about 60-65 feet in great, big, normal strides.  My PT told me that now she wants me to go slower to work on form.  I told her that that is harder.  Apparently she knew this.  (Reminder to self: take her cookies at next session so she won’t be as hard on me.)

The point of all this is that one day I’ll have the worst session and the next I’ll have the best session.  It’s hard to remember this in the midst of a bad session.  And in the midst of a good session, it’s hard to think of anything except for sheer exuberance.  Hence, the roller coaster.