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.

The beginning

The first thing I remember is asking for my mother.  I was groggy after my surgery, slowly coming awake.  I was too out of it to be in much pain at that moment.  But I wanted my mom.  While I was waiting for her to come back I had a terrible realization: I couldn’t move my legs.  When she arrived at my bedside, I started to cry and panic.  “Mom!  I can’t move my legs!  I can’t move my legs!”  She didn’t seem phased by this information, but instead tried comforting me and telling me to calm down.  My surgeon appeared in the next minutes.  I told him the same thing.  He did not seem surprised either.  What surprised me though, is that he seemed very concerned and almost sad by this.  Somehow he already knew.  Maybe I woke up before I remember and they knew.  I was so out of it that I really couldn’t tell you.

I had walked into the hospital ten hours prior.  It wasn’t supposed to be a major surgery.  Well, let me qualify that.  In relation to my other surgeries, this one wasn’t going to be major.  My last back surgery had been 15 hours.  The one before that 13.  This one was only supposed to be 4 hours.  Although, when the doctor go in there, things were worse than he had thought.  I guess that MRIs and all those other tests can only show so much.  This surgery ended up being 8 hours.  I felt bad for the other patients waiting on my surgeon that day.  I definitely threw off his schedule.

The hard part for me was that I walked into the hospital.  True, I had been on a cane.  And also true, I hadn’t been able to do a lot of walking.  But I walked in.  Now I couldn’t move my legs.  Because of this, they took me up to the ICU for intense recovery.  I had the best nurse in the ICU.  She took such good care of me.  On the first of second day (I lost track of time) I had to go for a MRI.  She went with me to make sure I was taken care of.  I remember telling her that the transport guy was flirting with her.  I may have been heavily medicated and in intense pain, but I can spot flirting from a mile away.

A few days into my hospital stay I met my priest.  According to my husband, I was in the middle of a panic attack and was in so much pain when Father John walked in.  (I remember Father John coming in, but don’t remember the rest.)  He said I instantly calmed when I saw the priest.  Father John was amazing.  He sat down with me and let me talk and cry.  He blessed me with Holy Oil.  He was truly amazing.  He visited me often while I was there.  I joked around that they kept moving me to different rooms but that Father John was very good tending his flock cause he always found me.

I spent about 4.5 of the 6 weeks in the rehabilitation unit.  When I first got there, I was a blubbery mess.  I couldn’t stop crying.  I was scared and in pain.  That’s where I first heard the “P” word: paraplegic.  When they referred to me as a paraplegic, I knew they had to be wrong.  The non-moving legs was just temporary.  My surgeon is one of the best in the country.  There’s no way I’m not walking again.  This made me cry.  But then I’d realize that there was a chance my legs wouldn’t come back.  That made me cry more.  They sent in a man who had been a paraplegic for 20 something years to inspire me.  This made me cry.  Then I felt terrible for feeling this way, but I couldn’t help thinking that while he was able to do amazing things, I just couldn’t be permanently paralyzed.  That made me cry more.  The staff gave me freshly baked chocolate chip cookies.  This made me cry less.  But then the thoughts would come back and I’d cry again.

The first day the therapists wanted me to do things like transfer from the bed to the wheelchair on a wooden board.  I told them they were smoking crack.  They wanted me to sit on the edge of the bed.  I would cry and tell them I would fall.  I was scared to do anything.  And did I mention the pain?  I was trying to not take pain medications for fear of addiction.  My doctors had to repeatedly tell me that it was in my best interest to take them and that there was no way I would get addicted if taking them as they instructed.  I complied, but with the secret thought that my goal was to get off of them as soon as possible.

So, that’s an introduction of me and the start of this crazily scary journey.  But at the end of the day, I hang on to my cautious optimism as it’s all I have to get me through.