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.

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!

Baby steps

There was a joke started in my family while I was in the hospital.  Back story: my sister’s baby turned 1 the day before this past surgery.  I have a knack for having surgeries around important dates.  The surgery prior to this one was on my dad’s birthday.  The one when I was 10 was just before Easter, but luckily the Easter bunny still managed to find me there.  It’s like I ask “when is the next holiday/celebration?”  and then I plan a surgery accordingly.  Or so it seems.

Back to the joke.  So because my baby niece is 1, my mom and I started joking that there were two new competitions between me and her: 1) see who could walk first; 2) see who gets out of diapers first.  Ok, so one of the glamorous awful side effects of back surgery is that sometimes the bladder is harmed.  Luckily (and I do count this as one of the luckiest things in my entire life) is that my bladder came back quickly.  So I beat the baby girl at that one.  Booyah!

The other one, well, she has me on that one.  The little angel decided to cheat.  She decided to skip crawling and just go straight to running.  Almost literally.  My sister got her a walker thing and from her first step, she was literally off.  And that little baby didn’t go slowly and unsteadily.  She went full speed ahead.  Cut to me who can barely take a few steps.  I’m like a baby giraffe on wobbly and unsteady knees.  I’ve been walking for 31 years off and on.  How have I forgotten how to walk?  And how can this little baby monkey just be up and running?  To add insult to injury, she loves to hang on my wheelchair as if to say that not only is she more mobile, she’s doing acrobatics on my wheelchair!  What I find comforting though is that she’s into cruising around on her own and figuring things out.  And by the time she wants to walk around with me and play games, I’ll be healed.  That’s my biggest motivation in getting back on my legs.

I’ve come to a realization though: baby girl is smarter than I am!  She skipped crawling.  She went from sitting there to running.  You know why?  Crawling sucks?  I’ve just gotten to the stage where I am able to crawl.  Not to brag, but I’m pretty good.  But, it still sucks!  My knees get dirty.  If I’m not careful, I get rug burn on my toes.  Getting back up off the ground is super hard.  It sucks.  But, it’s the most mobility I have right now, so I’ll do it.  And they say it will help me walk better, so I’ll do it even more.  And I’m resourceful so I’ve found ways to cope.  Toes get rug burned?  I’ll wear socks.  (Shoes cause too much resistance and I’m not trying to make things that much harder on myself.)  Knees get dirty?  I’ll wear shock absorbent knee pads.  (Funny story: before my surgery I was falling so often that my dad bought me volleyball knee pads to wear under my pants as my knees were pretty much destroyed.)  It’s hard to get back up?  I’ll keep doing it until I get up easier.  Little baby can walk better than me?  Use it as motivation to one day be able to keep up with her.