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.

Positive thought: 11/19/13

My doctor told me to find one positive thing a day.  This was back when I was on week two and a half or three.  He said I was too hard on myself and that I should focus on one positive thing a day, no matter how big or small.  Gee, Doc.  I don’t know why I’m so negative.  My legs don’t work.  I’m stuck in a hospital where I have to ask permission to go outside for a few minutes a day.  My insides were gutted, or at least it feels that way.  I’m not a doctor, but I’m pretty sure that they ripped out my muscles, put them in a blender on puree, poured it back into my back and then sealed me up.  But ok.  One positive thing.

I’ve been trying to do the “one positive thing a day” since then.  It really was good advice.  Today’s positive thing was simple to most people but huge for me: I made it into my closet.  The hubs and I moved into a new house while I was in the hospital.  Ok, he moved us in.  Like a true champ, he handled everything.  When I got home to our new place, I discovered that there were some rooms that I couldn’t get into.  It’s a new house and therefore, I figured, built according to ADA guidelines.  I assumed my wheelchair would fit everywhere.  I was wrong.  For example, the doors to all the bathrooms in the house are too small.  We literally had to take the door off the wall for me to fit through.  Awkward!

Much to my chagrin, the closet is another room I couldn’t fit into.  It was a hard turn that my wheelchair couldn’t make.  Until today.  I I made a 37 point turn to line up directly with the doorway.  I inched my way closer.  My hands didn’t fit on the wheels, so I used the sides of the door to push/squeeze my way through.  But after all that, I made it!  After much thought, planning, effort, I was finally in!

Here’s why this is a monumental achievement:  Have you ever tried to get dressed through another person.  If it’s a routine day where nothing much is going on other than lounging at home, errands or physical therapy, then it’s shorts and a t-shirt.  Nothing much there.  I have a certain number of each and they all seem to go together.  Whatever the hubs grabbed for me was fine.  But, on days where I’m going to work or out somewhere that I need to dress up, it could be a far bigger challenge.

Hubs: What do you want to wear?

Me: Oh, I don’t know.

Hubs: How about this? (showing a shirt)

Me: Ummmm, no.  I don’t like that one.

Hubs: Ok, how about this one? (bringing forth a new shirt)

Me:  No, that one doesn’t fit well.

Hubs: Ok.  How about this one? (voice getting more strained as he brings out a new shirt)

Me:  I don’t like that one.  How about the white one?

You could see how that would be frustrating for him.  Or, here’s another scenario (and yes, these actually happened):

Me:  I’d like to wear my silver sequined sleeveless top.

Hubs:  This one?  (bringing forth a top)

Me:  That’s a blouse, not a sleeveless top.

Hubs: This one?

Me:  That’s not silver.  That’s cream.  The silver one!

Hubs: This one?

Me:  That’s not sequined.  That’s glitter.

Ok, I don’t know if it was glitter.  I don’t know if I own a glitter top.  Quite frankly, that sounds messy.  The point is I could go check to see if I own a glitter top cause I fit in the closet and now I can pick out my own clothes.  And that is my positive thought for the day.

97 days into recovery

Today I am at 97 days after my surgery.  I can’t tell if time has flown by or dragged excruciatingly slow.  When I was in the hospital, it dragged.  Sometimes I think it actually went backwards.  I felt hopeless, like I was never getting out.  I’d look at pictures of my dogs and think that it had been forever since I had seen them and forever more until I would see them again.  I genuinely worried that they would forget me.  Since then, I have days that fly by and days that crawl.  I guess that’s to be expecting.  It’s tough because I have never been a patient person.  I want to be up walking.  In my mind, I could get up and walk across this room right now.  Clearly my legs just aren’t getting the message. 

This morning I had physical therapy.  After strapping my legs into braces and ace bandages, I was able to walk for about 60 feet.  I look like a drunken sailor when I walk.  I can’t make the walker go straight.  The physical therapist I worked with today kept forgetting to move the walker for me.  The audacity to make me do it all myself.  Ok, I guess that’s part of the therapy part.  I’m always saying I want to do things for myself.  It’s just unfortunate that I kept pushing the walker into the wall, rather than walking in a straight line.  (Hence the drunken sailor remark.)  By 60 feet, I was pooped.  I’m pretty sure that 60 feet equals 2 miles.  Uphill.  In mud. 

Last week at this time, I could only walk 50 feet, broken up into 20 feet and 30 feet.  The week before that 50 feet broken up 15, 15 and 20.  Today it was 20, 20 and 20.  Beyond that, my legs were remarkably less wobbly.  Before it was like a baby giraffe trying to figure out these new stilt-like contraptions below my body.  Now they’re more like al dente spaghetti: not quite hard but not exactly a limp noodle. 

97 days in and however many more that it takes ahead of me.  Better than I was yesterday and not as good as I know I will be tomorrow. 

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.