My Long Sleep (part 3), Moving Day

My Long Sleep (part 3) Moving Day

Just the knowledge that I was going to be moving to rehab kept me sane my last days at RiverBend.  I was so restless, bored, frustrated, and ready to move forward, I was about to drive the nurses insane and win the “most hated patient” award.   Nothing sounded good to eat.  Even the applesauce that had tasted so good earlier, they were mashing up my bitter pills in and making it a miserable experience. My tongue was burned and hurt with everything but cold.  Eating was work.  I had no appetite.  They kept asking me what sounded good and all I could answer was “enchilada” (or something Mexican, anyway).  So one day, the kind, Julie-like nurse, took me for a ride outside.  I don’t know that I had been out of my room much, other than for about 2 trips in contraptions that let me walk.  But I hadn’t been seeing very well—or maybe I just wasn’t remembering all I saw—so nothing really looked familiar. Today, they took me out into the hall in a wheelchair and suddenly I knew where I was. They took me through the gym outside onto a patio—FRESH AIR!!  But I remembered the gym from my days in ortho, in 2009—this may have been when Parma came in to visit me, as I was on his floor now.  I hadn’t known where I was—no room number, no hone, I couldn’t see the walls or anything beside me, only bright light that occasionally came in from the window and swallows darting in and out of the clock tower outside my window. 

The kind nurse took me outside and told me my family had called and asked if they could bring an enchilada for me (since apparently I had been refusing to eat).  She gave me a few minutes outside, then took me to a different room where I could lie down and sleep/rest until my family got there.  She wrote on the board, “Please wake me when my family comes.”  That was the first time I was aware of any white board in my room. 

After a little while the enchilada came—or maybe it was a burrito.  It tasted so good, and I knew I would be leaving soon, perhaps even tomorrow, and things were looking up.

It seems like I stayed in that room that night.  I accidentally got the tv turned on somehow and listened to that annoying peaceful music all night long—and would AVOID it the rest of my stay, as it played on the tvs in rehab too…I couldn’t figure out how to turn it off or find anything else…and it was the first time I really was aware of anything like a tv in my room.  I still could not move on my own, and so whatever position they left me in, I had to stay in.  Go figure. I could stand, but I could not roll over—that was even an issue in rehab actually, because my chest hurt so very much.  In the morning someone tried to get some breakfast down me, perhaps some yogurt and a bit of toast, but not much.  I don’t remember getting dressed—but I do remember that Gary was supposed to bring me some clothes and meet me at the rehab center.  I don’t remember which door I left RiverBend through, probably the front ones, but I was loaded with all the things people had brought, flowers and a puzzle book, almost more than I could hold.  I do remember a vase of lilacs that made the whole van smell heavenly.  Even the driver commented on it.  The van had a ramp out the back and the driver just wheeled me up into the back of the van and locked my wheelchair in place.  I tried to watch as we left, I knew the roads, but the light was so bright and I really didn’t know where we were going, other than someplace else. 

He wheeled me to my room on the 4^th floor.  It’s hard to imagine that it was the same room I had the whole time, because it looked so very different the first time I was in it and than when I left.  My brain was still not “seeing” things properly.  My first impression was that it was a long T-shaped room, with a bathroom at one end, a bed along the far wall (which was actually a window with blinds) and two “windows” on the wall that had dividers in them.  It reminded me of a school room at first.  They helped me up onto the bed and explained that they had to do Dopplers of my legs—that they had to do that for everyone.  I remember they had a “Sara Stedy” (http://www.arjohuntleigh.com/products/patient-transfer-solutions/standing-raising-aids/sara-stedy/ ) like they had had at RiverBend, and I had to put my hands on the bar and pull myself to standing, and it hurt like heck (my chest), but once I got past that, standing up felt SO good. Then they would affix a sling behind me and I would sit back and they could wheel me around, like to the toilet, and set me down….Ah!!  Someone took me to the bathroom when I first arrived.  Looking back, I think it was Marc (my chocolate pudding nurse) who had been with me from the very beginning at rehab.  After a little while, Gary and Laura showed up and we all went over to the dining room (which was across the hall from my room) and they explained some things to them and they ordered me a salad for lunch and Speech Therapy came and watched me eat….I started with mashed vegetables…yuck.  But the salad had Italian dressing and I ate it, though my hand shook ferociously, with gusto.  

I really don’t remember much of the rest of that day.  I do remember Marc or Lou or one of the male nurses saying they needed to do an ultrasound of my bladder to check for residual.  But their equipment was in use somewhere else or otherwise AWOL and I told him, “Trust me, there’s nothing left!!”  I think they had removed the catheter before I left RiverBend and it felt so good to go….At some point, someone came in to remove my PICC line.  I didn’t even know I had one.   I remember the physical therapist (was it Shannon?) using a slide board to get me from wheelchair to bed and back.  Oh, how hard it was to scoot myself.  My left leg didn’t work and my chest hurt so my arms were of little use, and it was scary and painful and hard.  But for the first day at least, perhaps two, that was how I got from wheelchair to bed and back.  Exhausting.  And I had to do it for every meal and for every bathroom trip. 

The view out my enormous window was (from the 4^th floor) the tops of some dead oak trees, and some weird-looking equipment on the roof of the building across 13^th Street.  Internet reception or satellite or ??  The divided windows turned out to be two white boards, and lo and behold, there was a tv, but it would be days before I would notice it.  My lilacs sat on a table beside my bed where I could smell them. 

The clothes that Gary brought, some jeans and some shorts, did not fit.  The shorts, which I had had for years, were absolutely too small….I had gained weight in the last 2 weeks, not eating, only on IVs…that happened in 2009 when I had my foot surgery too…There must be a LOT of salt in the IVs they give you…Very frustrating.

Physical therapy came again, either that night or the next day and she asked if I could stand to transfer, rather than using the slide board.  Or maybe I asked.  I was already getting stronger.  Attitude and hope are everything. 

My Long Sleep (part 2) Waking Up

My Long Sleep (part 2)

Forgive me if this seems disjointed.  These memories are all a jumble in my head. I have tried to sort them into when they probably occurred by comparing them to what I know, my husband and daughter’s notes, what other people have said, etc. 

The first day I really remember after Easter is April 17.  I’m glad I remember that day.  I’m sure I was on some wonderful drugs—Provigil, for one, to help restart my brain, since it didn’t seem to want to wake up from the coma I was in.  I was also on some medications that the doctors told my family would make me not remember much of what I went through.  I was also on some medications I would not have let them give me had I been conscious, so I apologize for what I did or said while on those medications…

On April 17, I have a memory of Alex DePue’s silhouette (and if you have ever seen his hair, you would know you CAN actually recognize him by his silhouette) and Miguel’s guitar and silhouette, and “Classical Gas”, one of my favorite songs.  I don’t know why I remember them in silhouette, other than I have very little visual memory of events, almost like my sound recorder was working but not my visual one.  This is a little taste of what Alex and Miguel sound like.  https://www.youtube.com/watch?v=pycdoWOUrO0   I couldn’t find a recording of them playing Classical Gas, but here is Mason Williams playing it (he wrote it).  https://www.youtube.com/watch?v=EEzyrpfrPEI   Note:  Mason has a whole lot of strings with him, but Alex is his own orchestra!!  Except for the horns, it pretty much sounded like this.

What a wonderful thing to be the first thing you wake up to!  I remember bits and pieces of other things.  I remember being sung to.  I remember waking up with a song in my heart, a song we sing from church.  I know that Francine must have come and sung it to me, but I remember waking up trying to sing it.  “You dance over me, while I am unaware….”  You can listen to it here https://www.youtube.com/watch?v=9qVkzdK6N20 .  This is the song I woke up singing. 

When I finally did come to, I had such a sense of being loved, like I have never had before, and an absolute loss of fear.  I didn’t know where I was, when it was, who I was, or that I was even sick.  I didn’t even really know I couldn’t move.  But I had a lack of fear like I have never known.  I wasn’t conscious of time or family or work or home.  I had no thought of things I wasn’t getting done.  I didn’t know I had children.  I didn’t KNOW anything.  Most of all, I knew no fear—and I have thought over these past weeks how to describe that to you, but I’m not sure I ever will be able to.  I had no fear of failure, no fear of what other people would think.  It was like being a young child, crawling into your parent’s lap and having them hold you tight and say, “it’s okay.  It’s gonna be okay.”  And you totally believe them, because they are grown-up and can do anything and know everything.  It was a peace like I have never known, a peace I want to hang onto, a peace that I don’t have to DO anything or BE anything—that I’m okay, that it’s all okay—and there was such a joy that came with that. 

And my mind started to look for the familiar.  I had a nurse who looked like my cousin Julie, and she was so kind, and she ended all of her sentences with ‘eh?’.  I looked for my friends’ daughters, I looked for my cousins, I looked for people from church.  I looked, I called.  I needed familiar.  Nothing was familiar.  I’m not even sure I was remembering things from day to day or from hour to hour. I think the nurses had to keep telling me their names over and over and I think I probably said the same things to them over and over, “You look like Julie,”  or “You look like Sarah.”  I thought of my dog.  I needed to see my dog.  During this time, my dog ran away from home and he made his way to the pool…not the same pool I had gone to, but I’m sure it smelled the same.  I think he was looking for me too. 

I was so glad to see people I really did know, Mike Tucker and Marvie and Merle Tish.  Gary, Keary and Laura came nearly every day and they felt like I recognized them.  (Gary said I smiled when I saw them so he was pretty sure I could see, even though I don’t remember seeing much.)  Linda came…I know for a while, it seemed like a pretty steady flow of people, and please forgive me for not remembering who…it’s all very fuzzy—I blame the drugs. 

I’m sure I didn’t start talking until they took me off the ventilator, on the 15^th.  I do remember trying really hard to ask for things like orange juice and applesauce.  I think they probably fed me thickened orange juice with a spoon.  I have a very vague memory of icy orange juice, like slushy almost.  And I remember trying really hard to say “orange juice” and how hard that was and how I sounded like a drunk when I said it.  And I think they fed me applesauce and I tried so hard to say applesauce.  And it all tasted so good and I was so thirsty and my tongue was so sore (and is STILL sore) from the defibrillator.  I remember trying to talk even when people weren’t around.  I remember someone asked me if I had children and I didn’t know.  But something in my brain started dredging up memories…I didn’t know who I was really, but I remembered I had a daughter—and I recognized her when I saw her—and I remembered I had a son, and I knew him when I saw him too.  And even if my mind would not have remembered them, all my emotions did, because I remember the joy at seeing them—how beautiful they were/are and how happy it made me to see them.  And I remember saying, even if there was no one around to hear, over and over and over, so I would never forget again, “I have a daughter Laura.  She’s beautiful.  And I have a son, Keary.”  I know someone must have heard me at least once because someone asked, “That’s an interesting name.  How do you spell that?”  I didn’t remember that Gary couldn’t drive.  I didn’t remember that we didn’t own a car.  I didn’t remember a lot of things about my life, about me.  Funny how we still are ourselves, even when we don’t know who we are….Gary said I still had my sense of humor.  It was one of the first things to come back. 

Someone asked how long Gary and I had been married and I couldn’t remember and couldn’t figure it out, so I told them what Gary always says when he can’t remember, “Not nearly long enough.”  So Gary became known to some of the staff as Mr. Not-Nearly-Long-Enough.  

I remember getting a little physical therapy at RiverBend.  I knew I needed to get up.  I wanted to move.  I remember trying to get up in the night, but my legs would not move well and the best I could do was to bend them up on the bed and my foot would step on the catheter hose and it would pull and hurt, so I would try the other foot.  I think I probably went back and forth with my feet all night, first trying one then the other.  When they had moved me out of ICU I was awake and aware enough that I wanted to go home, I wanted my dog and I wanted OUT of that place.  It was so cold and dark and lonely and I wanted familiar.    The ceiling looked weird and far away, like things do when you are drugged.  I felt like I needed to go to the bathroom and I could see a little light on the wall that I thought was a switch for the bathroom and I was grabbing for things that weren’t tied down and trying to throw them at the light on the wall to turn the light on so I could see where I was, so I could get up and go to the bathroom.  Long, long hours awake in the dark (I don’t know if it was really dark or if I just couldn’t see…).  I know there was something on my left but I couldn’t see it.  I tried to reach for it, but there was nothing that wasn’t attached and it felt wet—I don’t know if I spilled water or pudding or what have you…I could not see to the left at all. I remember someone coming in and saying, “Oh my” but nothing more.  I couldn’t get up and I couldn’t figure out why and my chest hurt when I tried to and I didn’t know why things weren’t working…I didn’t know I was sick,  I didn’t know I was paralyzed.  I didn’t know I was tied down.  But I was sure kicking my legs a lot that night. 

They would come in every day and ask me if I knew what day it was and where I was.  Then they would tell me.  It’s April 18 and you are at RiverBend in Springfield.  I remember telling them, “It’s my brother’s birthday, I need to call my brother.” But I didn’t know his number and even if I did, I sure could not work the stupid phone (I think you need a PhD for that).  When I would look out the window it was all white, bright and sunny, glaringly white, and so I would tell them I was in Hawaii.  That kind of became my go-to lline.  “It’s April something and I’m in Hawaii.”  Finally, one nurse got really irritated at me and said, “you know, you won’t get to go home until you answer correctly.”  Then one day I could actually see the cars driving on the road outside and I asked a nurse, “What road is that?” (All this time it had just looked like ocean or white sand to me) and she said, “That’s Pioneer Parkway.” And then it clicked, I wasn’t at RiverBend in Hawaii, I was at RiverBend in Springfield/Eugene.  Something familiar.  Something I knew.  “Hey, the best nurse ever is on the orthopedic floor, Parma.  You should go meet him.  Tell him I said hi.”  And at some point I remember Parma sticking his head in.  “I heard you were here, just wanted to check on you.”     

I kept telling them I needed to get up and walk.  I kept telling them I needed physical therapy.  Finally, a few days later, they did get me up.  They had me stand by this machine and they strapped me in and told me to walk, to “drive it like you stole it” and I was happy and I walked, all the way to the end of the hall and back and it felt so good, and I was so tired by the end.  And then they let me use a machine to stand up  and they would wheel me to the toilet and let me go…and wheel me back. ….  After two weeks in bed, it was all I could do to stand, but my desire was stronger than my legs were weak, and my will was stronger than my chest was sore.    I got so frustrated with them, though because if I was lucky, I got to get up once per day….if I was lucky.  Sometimes not even that.  I started protesting and getting depressed, refusing to eat.  So they decided to put me in rehab.  None too soon and good riddance RiverBend!!!  

My Long Sleep

My Long Sleep

The following story is hearsay.  Although, if you have enough witnesses, hearsay can be taken as fact, and since I have no real memory of the events from April 6 through April 17, and I trust those who have told me the story, this is as close to the truth as I can relate to you.

Monday, April 6^th, the day after Easter, Leslie, my 70-year-old neighbor and swimming partner, took Keary and I to the River Road Pool, as she had 2 to 3 times per week since the fall.  I usually swam 30 to 35 laps (about a mile) in the hour it took Leslie to swim 45 laps.  I had been requiring Keary to come with us because he isn’t very motivated to get exercise and because he is such a good swimmer—it’s a gift—and I want him to be in some kind of shape when summer comes so he can work on more than just conditioning when summer comes and the Junction City Pool opens and he has access to a coach.  So on April 6, we were all at the pool.  We must have been nearly done.  I think Leslie was on her 45^th lap.  Apparently I had told Keary I was tired and had taken a little rest at the shallow end of the lane K and I were swimming in.  I vaguely remember lying on my stomach in the water, in a dead man’s float, but I don’t remember any pain, or any fear, or anything else.  Keary said he was about halfway down the lane when he heard the lifeguard’s whistle, and he looked back and I was still floating face down.

The whistle cleared the pool and called lifeguards and other helpers from other parts of the facility. Two lifeguards pulled me out from the water partway and shoved a board under me and two more lifeguards and the maintenance man pulled from above and they started CPR and called the paramedics.  My heart didn’t want to restart.  They had to shock me.  Still it did not want to restart.  Eventually they got me loaded into the ambulance.  Keary had called Laura.  It was her first day back at work since her accident last fall, and she was being called away.  Since Gary doesn’t drive—we don’t even have a vehicle anymore, she had to pick him up and take him to the hospital.  Keary rode to the hospital in the private vehicle of one of the EMTs.  Apparently, after they loaded me into the ambulance, something happened and the ambulance sat in the parking lot for a while before they left.  The EMT with Keary told him they were putting in an airway, because I had gotten water in my lungs. 

When they got me to the ER, they took me down to the cath lab where they did all kinds of tests – looking at my heart to see what was wrong, starting a cooling protocol on me to help diminish any damage, as they weren’t sure why my heart stopped.  Keary got passed off to the chaplain and although Laura and Gary arrived shortly after the ambulance, it was quite a while until he and Laura could locate Keary and the chaplain.  Poor Keary. 

I’m not sure of all the timing of everything.  I know they did Dopplers looking for clots (or remnants of clots) in my major blood vessels.  Nothing.  They looked closely at my heart but found no clots, no valve problems that would throw a clot, no blockages.  My carotids were clear.  They were pretty sure I had had a stroke, as I was not moving my limbs at all and was unresponsive to stimuli.  Though Leslie had told the paramedics I was functionally blind, this did not get passed along, and so when the neurologist saw me, she was concerned because I wasn’t tracking things with my eyes. 

They had to have me on a respirator because I had inspired water and I was getting over a bronchitis.  I was trying to breathe over the respirator, so they put me on paralytics so my body would stop fighting the respirator.  When they took me off of these a few days later, my right hand kept trying to pull the NG tube out and they had to strap it down. 

They did 2 CT scans of my head and found nothing (I love that line).  They were looking for intracranial bleeds, but there wasn’t one.  Eventually they got around to doing an MRI of my brain and found a host of clots, what the neurologist called a “shower stroke”.  They originally thought that the stroke was what stopped my heart.  They found no muscle damage to my heart and no clogged arteries, like you would expect to find from an actual heart attack.  But they don’t know what caused the stroke.  It’s the old chicken-and-egg story.  The cardiologist thinks I had a bout of atrial fibrillation which allowed blood to clot in my heart and then spread all over my brain.  But in all the monitoring they did of my heart, they only recorded one episode of atrial fibrillation, and that was in the ER the day I was brought in, and the cardiologist said that he would have expected to see that in anyone who had gone through the trauma I went through.  I wore a heart monitor for weeks and to my knowledge, had no atrial fibrillation.

They took the ventilator out on the 10^th day I was in ICU, April 15.  Apparently I saw people and made eye contact and was more responsive, but I remember very little of it.  They had taken me off the paralytics and such, but I was slow to wake up. 

On Friday, April 17, they moved me out of ICU to the step-down unit, and then to a regular room. The following Wednesday—April 22?—they moved me to the rehab center which also seems like a dream to me—it’s such a fuzzy memory.  From then until May 1^st, I was in the rehab center where I had fantastic therapists who encouraged me to regain the things I had lost, who taught me to eat again, to use the bathroom, to dress, to walk, and to regain logical thought processes, and math ability.  On Friday, May 1^st, I got to come home.

That’s the hearsay part. I’m doing well.  I’m continuing to heal and except that I can’t stand on one foot, my hands shake a little more than they did, my legs are still fairly swollen, and my chest and back hurt from the CPR and my jaw hurts from something (Laura says the intubation), I would not know I had a stroke. 

Life Lessons from my Viola

There are often blessings hidden in crises, if we look.  Last fall, my daughter broke her leg badly and had to have surgery to repair it.  She was off of it for a while and has essentially mostly been off work for four months.  The up side is that since she was housebound, she had more time to practice violin and I had more time to spend with her.  Recently I volunteered us to play in a talent show at church—she the violin and I the viola.  I’m sure she will have her own list of what she learned through all this, but I’d like to share a few gems I picked up. 

In my fifty-plus years of life, I have had much opportunity to perform in front of people—from speeches at school and church to piano recitals and even viola recitals, playing with the Eugene Community Orchestra for a few years, things like that.  I’m very aware of how your mind can just go blank when you get up in front of people to do something, even something well practiced.  My first piano recital, which was only for the other students in my piano class, I played a piece called Fairy Tale by Dmitri Kabalevsky. (You can hear it here: https://www.youtube.com/watch?v=yOj7Y_DzeCY ).  While my eyes were following the sheet music out of habit, during this performance I was not really seeing the music at all, but playing from memory.  I actually did amazingly well, at least until I got to the final chord, at which time my mind went absolutely completely blank and I had no idea where to put my hands, nor could I find my place in the music, even though I knew it was the last chord.  So I just winged it. What came out was some chord that wasn’t even in the same key as the song.  I remember someone saying once, if you play the last part well, the audience will forget the missed notes you played earlier.  Well, it happens that the converse is true as well.  If you play the ending wrong, that’s what the audience is left with, and they forget that the rest of the song was played perfectly. 

Also, fresh in my mind was our performance for Laura’s husband’s family on bake day, before Christmas, when we had played fairly well warming up in the living room, but I could not hit a string to save my life when we went into the family room to play.  I was horrified and I froze, and not a bit of it sounded good. 

As an older person, learning viola, I got past the habit of learning to play by rote and forgetting to read the music. However, as I have lost my vision, reading music has become nearly impossible for me.  My best attempts have included putting on the glasses that allow me to read (but only very close up) and then essentially hugging the music stand in order to have it close enough to read, and trying to play my viola behind it.  That didn’t work very well.  My other attempt, which is a little easier, though probably no less entertaining to watch, has been to use and overhead projector to put the music on the wall and then stand very close to the wall and dance around my shadow and play up high and down low as I try to read.  Neither of these methods would work for me for performing—although, it might have made for a good laugh….

I have had to learn all my parts by memory, from Laura reading them, playing them for me, and then learning through muscle memory and the pictures I make in my head of what my fingers are supposed to do. Laura memorizes much more difficult music that I had to learn.  And last September we watched and listened as Itzhaak Perlman pulled 45 minutes of music out of his head in front of a silent, awed, 2000 listeners. So, it can be done. 

With all this in mind, we opted to play our easiest pieces last.  And I was resigned to making mistakes.  This is in front of a bunch of people who have never heard me play, so I wasn’t really worried about making mistakes.  I was worried about playing THROUGH the mistakes.  The only thing more terrifying than getting up in front of a hundred or so people and making mistakes, is getting up there and freezing up.  During practice Laura learned where I was more likely to make mistakes, and she would often call out “F-sharp” or “D” or whatever I was supposed to be doing.  In one of the songs, I was to play a simple little progression, B-C-D-E, but that seemed to be a place I often got stuck. Once, when we were playing that, Laura could see me forgetting and looked at me, raising her eyebrows in little increments to remind me what I was supposed to play. 

During our more difficult piece, when it was my turn to play the melody, I had to shift to hit the high notes. When I played the harmony, I played the same arpeggio, only lower, but my hand kept wanting to shift. In an inspiration of genius, Laura showed me that I was really still playing the same notes only an octave higher, and if I made the mistake during the performance, it was okay, just go with it, and then shift back down for the last measure. 

When performance time came, exactly what I feared would happen did happen.  Just like on bake day, I could not hit a string to save my life. I was playing the melody and I was consistently hitting two strings, and sounding awful. But I had seen that coming and knew that I had to focus on my bow arm, moving my shoulder to change strings and my forearm to play.  I got past that obstacle.  When it came time to shift, I also missed it, but I had practiced the “what if” of that and worked through it.  When we got to the end of that song, I forgot NOT to shift, but because we had talked about what to do if that happened, I was able to play the last measure correctly, and end on the right notes! 

The rest went fairly easily.  We missed little things here and there, but it was not major. We had made it through the hard stuff, and now all I had to do was remember the notes and play out and look at Laura for some timing cues here and there. 

So, as I think about that performance, and how it applies to life, I see two major themes.  First, accept that you are going to make mistakes and make peace with that.  I heard a saying recently that the difference between a master and beginner is that the master has failed more times than the beginner has even tried. Second, know yourself.  Know where you are likely to fail.  Don’t stop at failure.  Learn ways to play through the failure.  Learn how to go on from the wrong place, whether it is asking for direction from a friend, “F-sharp!” or practicing getting to the right place from the wrong place.  But play!  Play through, and play with conviction!