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!

I’ll figure it out

Sometimes I forget that I am handicapped. Sometimes I forget my legs don’t work. The doctors say that’s a good thing. The whole mind-body connection thing. If my brain thinks it enough, it will start making the connections. I’m not a doctor. But I am a believer. So I’ll go with that.

Yesterday, as I parked at the courthouse, my assistant went to get the wheelchair from the trunk. I sat there in the passenger seat, putting my coat on. For a brief moment, I thought I was going to get up and walk. I didn’t really think about it. That was my natural impulse. I was actually sad for a second after I realized my wheelchair was coming around. But, it’s also motivation. I’m going to get there. Eventually. Eventually….

Another instance occurred last night. A new client called to retain my legal services. She has a case and needs a defense attorney to represent her. Not a problem. I’m a defense attorney. I can represent her. Oh, and her case is Friday. Not a problem. I will rearrange my work schedule to make that happen. The case is in the Catalina branch court. Avalon. Catalina Island. An hour boat ride away. A two hour drive to the boat. I told her no problem.

The hubs mouthed to me “How?!” I mouthed back “I’ll figure it out.” That seems to be the motto of this whole journey. I’ll figure it out. In the hospital, my aunt told me I had to erase “I can’t” from my vocabulary. My aunt is a physical therapist and pushed me the way only a family member can: relentlessly, unforgivingly, lovingly. The problem is that it’s hard to forget “I can’t”. Sometimes “I can’t” feels like “I’ll never” or “I used to, how can I not now?” Sometimes “I can’t” feels like loneliness. Like despair. Like a never ending black hole.

But, “I can’t” becomes what you make it. And that can change daily. For me, I’ve made the conscientious decision to turn “I can’t” into “I’ll figure it out.” I love a good puzzle. A mind game. A challenge. Problems are something you can figure out. For me, my legs don’t work. But I will figure out how to get them going again. It’s hard to get into the car? I’ll figure it out.   It’s hard to put on pants? I’ll figure it out. Turn it into a game or challenge and I am intrigued.

A year ago, I loved taking Catalina cases. They were like little vacations for me. I’d drive out on Thursday afternoon. Take the ferry across the sea to the tiny island. Spend the night. Go to court the next morning. Catch the ferry back. It was such a nice escape from the heat of the desert. I didn’t have to worry about anything. Now it’s a bit trickier. I’ve been turning Catalina cases down. Until yesterday. It just hit me that I don’t want to be punished because of my wheelchair. I love Catalina. By George, I’ll figure out how to make it work!

I called my friend Kiki and asked her if there was any way she could get out of work on Friday. She said she really had to go. I said “Too bad, cause I was hoping you could take me to Catalina for court.” “Now wait a minute!” was her instant reply. Suddenly her work schedule became a bit more nebulous. She consulted her husband who backed her decision to skip work to help her needy friend. I’m thanking her by way of lunch and the ferry ticket.

A year ago, figuring things out was easy for me. I’m good at multi-tasking and planning. I’m good at rearranging and finessing. These days, figuring things out means I am dependent on people. And I hate being dependent upon people. (Well, except upon my family. But that’s a different story.) I hate asking people for favors, or owing them favors. But luckily Kiki is the kind of person who does things because she is a good friend. Not because she’s wondering what she can get from me down the road because of it. That’s a rare quality in a person.

There are still days that “I can’t” will get me down. But I will continue to get out of bed. I will continue making great efforts. I will continue trying my hardest. Because to me, “I can’t” will never become “I won’t.” And on that note: Catalina, here we come!

 

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.

Drill Sergeant, et al

You know those people who compare everything they’re doing now to things they did before?  And the things they did before were always so much better?  (Ex: Oh, I like this bakery, but the bakery in my hometown made the MOST delicious cupcakes.  They were so fresh and yummy.  But, I mean, these are good too…….)  There’s a word to describe those people: annoying.

I hate to admit it, but I am one of those annoying people.  I hear myself doing it, and I can’t stop it.  The words spew out of my mouth before I can shut it.  Before I can even think to shut it.  But, to be fair, I find myself only really doing it (that I notice anyway) when it comes to my rehabilitation.  This is so not fair to my current physical therapists.  They’re really great.  I see them two to three times a week and they push me and encourage me.

The problem is that I had the benefit of going to the best in-house rehabilitation facility in the world.  I’m pretty sure I read that somewhere.  Possibly it was in the reviews I gave them.  But no matter, it was the best.  I was there for a little over four weeks.  I went in a crying, sniveling, scaredy cat.  (I left in a similar state, but that’s beside the point.)

Drill Sergeant:  My main physical therapist was often referred to (by me) as the Drill Sergeant.  Sometimes, when he was especially cruel, I referred to him by other names.  But, that was usually under my breath or after he was gone.  Also, besides the point.  He was seriously the best though.  He pushed me and did not let me get away with any of my normal tricks (read: trying to fake through exercises to just get them done with).  I remember one set in particular when I got stuck on the number 6 because he kept. making. me. do. it. over. and. over. and. over.  If it was sloppy, redo it.  If it was weak, redo it.  If he wasn’t paying attention, redo it.  I used my never fail trick of crying in frustration.  He let me sit for a minute to calm down.  Then he made me redo it.  I know, you’re thinking why was he the best.  It’s because even though he put the “UGH!!!” in “tough”, he was super fun and hilarious.  He cracked jokes while torturing me and made it somewhat fun.

Dr. S: Because Drill Sergeant seemed to always be on vacation or on days off, my other main physical therapist was Dr. S.  She was the complete opposite of Drill Sergeant.  While Drill Sergeant was crazy hyper and silly, she was mellow with an awesome dry sense of humor.  She pushed me just as hard and was always quick to answer all of my technical “But why?” questions.  She was a PhD which, I think she should have bragged about more.  Seriously.  If I had my doctorate, I’d probably throw that into any conversation several times.  “Would you like bread on your table?”  “Well, since I’m a doctor, yes.”  See, it works very naturally.  Dr. S and I also had a ton in common, which probably also led to me liking her so much.  We had the same first name.  We got married on the same day.  She often vacationed (and got proposed to) in the city where I live.  She’s from Chicago and I love the movie Ferris Bueller’s Day Off.  Her husband is English and mine speaks English.  See, the similarities are endless!  We’re practically the same person.

All of the other PT’s there were amazing as well.  I worked with just about all of them.  And the aide’s were great too!  They all got used to my emotional roller coaster of a recovery and were quick with the support and encouragement or with the kleenex.  I’m surprised none of them obtained stock in Kleenex.  Seriously, I cried a lot.

[Sidenote: My OT’s were so amazing that they will get their own post later on.  I mean, the people who gave me my first shower after 2.5 weeks and taught me how to pull on pants while sitting on a toilet deserve their own post for sure.]

When I was an inpatient, I was in therapy 1000 hours a day.  Ok, I think it was really 3-4 hours, but it felt like 1000.  I was always drained by the end.  OT started out fun.  They brought in Connect 4 for me to play.  Um, yes.  I can play a game.  They got more cruel from there.  Making me sit on the edge of a bed.  For a few days, that was one of the scariest things I’ve ever done.  I specifically remember saying that I hang out with criminals on a daily basis for work (I’m a criminal defense attorney) and that doesn’t cause me any worries.  But they want me to sit on the edge of the bed and I was going to hyperventilate.  It’s really a very scary thing when you’re in pain, have no control of your body or legs, and can’t even feel them on the ground.  But, they got me going little by little.  They knew exactly what they were doing and how to do it.  In PT, it started out as torture.  My very first session, they tried to have me stand while strapped, buckled, barred and cushioned into a frame structure.  I stood for a “nanosecond” as that PT told me, all while crying, yelling, cussing and snot flowing.  The weird thing was that for all my freaking out, my go to reflex was to hold my breath and close my eyes.  Apparently I felt it was better to pass out blindly.  To this day, the common trend in my rehab is the command “Breathe!”  But, I eventually went from a nanosecond to an entire second to minutes.  They never pushed me more than I could do.  They mixed it up so I wouldn’t burn out.  They answered my annoying questions.  They put up with my emotions and terrible jokes.

So, it’s no wonder that at my new outpatient facility they’re going to hear repeatedly “Oh, at CS they had me do it like [this].”  Or “My PT at CS would have me do it like [that].”  You’d think they were rockstars the way I talk about them, or that they were the inventors of physical therapy itself.  But, in my limited world of rehabilitation, they are and they did.

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.