The Small Things

The other day my parents lent me a book  My Stroke of Insight  that, ironically, I had given to my father as a gift a year or so ago.  Written by a neuroanatomist, it's about  her journey to recovery after suffering a massive stroke in her left hemisphere at 37 years old.  While her resulting disabilities were much more serious than mine, I found it to be a fascinating read and there were some parallels between her story and mine.

I share her unwavering belief of recovery, her willingness to do the hard work and her fascination about what happened to her. In her chapter on "What I Needed Most" She writes about needing people to treat her as if she would fully recover, needing to have dreams to work towards and needing visitors to bring their positive energy. But the section that really caught my attention was "it was important that we focus on my ability, not my disability" (1)  The author talks about staying focused on how well she was recovering by celebrating achievements every day and if she didn't, how easy it was to focus on the vast number of things that were lost.

That got me to thinking.  Do I celebrate my small successes? Do I pay attention to the small things I'm gaining every day or every few days? Aside from my weekend at home where I dwelled on the lost, I stay focused on the positive in attitude, but do not pay attention to the small things. I've been focused on the end goal - walking.  It's been all about the walking.  I'm sure I've had small successes, and probably lots of them, but they have been achieved without recognition and celebration. 

Today I've taken a moment to reflect. I've blogged about the big stuff, but what of the small things ... those day to day changes that cumulate in the big successes. Do I even know what they are?  It's taken more than a few moments of thinking, but I have had successes that should be celebrated.

Some of the small things:

• I can put my right foot into my sandal without having to control the foot with my hands.
• I can now stand on one leg (the bad one) to put on my scrub pants when getting dressed.  I still hold onto a bar, but I can weight bear on the bad leg and lift the good foot off the floor ... for more than a nanosecond.
• I'm a wicked wheelchair driver - totally have the hang of it :)
• When I'm sitting, I can lift my right knee straight up with more control.
• I changed the sheets on my bed on my own this morning
• I can use a regular toilet without a commode (some would argue that's a big success :)
• I can cross and uncross my legs with able-bodied grace
• I can't call my right leg spazzy anymore ... I've almost completely overcome that party trick
• I can write my Cheesy Quote of the Day on my whiteboard, standing up without holding on to anything (for what it's worth, today's cheesy quote is "If you want to test your memory, try to recall what you were worrying about one year ago today" - E. Crossman)
• In the morning I get up, showered, dressed and go for coffee ... with total independence. The coffee run still requires a wheelchair, but I do it all myself.
• I had the endurance to walk two loops of the floor today instead of one.

I'll never take my eyes of the main goal, but I agree with the author. "I may not be in total control of what happens to my life, but I certainly am in charge of how I choose to perceive my experience" (2)




(1) (2) Bolte Taylor, J. My Stroke of Insight. (2006). New York: Penquin Group

Mrs. Doubtfire

I will preface this with a couple of things.  I searched all over the internet for the clip from the movie Mrs. Doubtfire that I wanted and couldn't find it, but the trailer is close.  Also, in the interests of privacy any specifically identifying information about my ex-suite-mate has been changed, but the story remains otherwise factually intact.

Mrs. Doubtfire

To set the stage: My ex-suite-mate was originally from Scotland, she had the accent (all quotations need to be read with the appropriate accent), the vocabulary you would stereotypically expect, and an out-going, highly social personality. I found out over time that she is in her early 70s, and had unexpected serious surgery, and a boyfriend ("oh no, we don live together ye know, I have me own place"), and was going deaf.  Everyone around me thought they were a sweet old couple, but when you live with it 24/7, sweet becomes old really fast.  I mean real fast.

The Nickname.
I had people visiting at a time when she was in high-social-mode ... one of those times when she would call everyone in her address book (literally) and repeat the same story to each one of them.  We could hear everything, but see nothing.   So in the midst of one of these conversations, one of my guests said "OMG ... it's Mrs. Doubtfire .. 'I'm here to see the children'".  It's a good thing we weren't eating at the time, there would have been half chewed food all over the floor.  She was the perfect Mrs. Doubtfire ... the nickname was born.

The Boyfriend
In his defence, Herb seemed to be a truly kind man, and had enough awareness that when he was around he encouraged her to talk more quietly.  He also brought headphones for her tv (which she promptly forgot to wear whenever he wasn't around). He would dutifuly come see her twice a day: once in the mid-day, but the second time, he usually didn't arrive until 7 - 7:30 and he wouldn't leave.  Again, from everyone else - oh but they're such a sweet old couple.  Yeah, not every day they're not. Not until 10:30 at night they're not.  GO HOME, she has a roommate.  Thinking that way made me feel alternately bitchy or justified, depending on the night.  Visiting hours are until 8pm ... why are you putting me in the position of feeling bitchy about wanting you to leave.  This isn't the cardiac unit ... she's still going to be here tomorrow.

The Character Trait
Like everyone, there are traits in people that I'm not particularly fond of.  But one in particular, especially in women, is pathetic weakness.  That whimpering, whiny, inability to form an opinion without the validation of someone else.  Not the regular do-you-agree-because-it's-an-important-decision check in, or the infrequent do-you-agree-because-I'm-not-sure check in that most people have with their significant others, ... I mean the constant, incessant, validation type.  I counted once.  In an hour she used the sentences: "what do you think Herb", "am I right Herb", "I doing good, aren't I Herb" 14 times.  That's once every four minutes and 18 seconds. I wanted to reach through the curtain and tell her to grow some self esteem.  I won't even get in to her ability to whine ... award winning.

The TV
I have overheard more Anderson, American Idol and Dancing with the Stars than I care to in a lifetime.  If she knew the song, she'd sing along.  Enough said.

The Name Repeating
Because she was going deaf, every conversation - phone or in person - was held at full volume. No chance of escaping it. I knew every piece of her business that she chose to share with anyone.  At first it was amusing that she had a habit of repeating the name of the person she was talking to.  "oh, isn't that lovely Paula. Oh, you must be sooo excited Paula. You know Paula, they're letting me home at the weekend Paula."  Then it became not so amusing, then it became downright irritating.  One of my guests counted the time gap between name use ...  in one phone call, she used the person's name every 10 seconds or less.   That's impressive Paula.

The Visiting
At first I didn't mind her so much because she kept her socializing to her own circle (notice how many of my sentences start with "at first"), so I was okay.  But one day one of her guests said .. "oh, you have a roommate" and popped her head through the curtain .. "hello there!"  Um, hello yourself and get out of my room.  That's not what came out of my mouth, but it's pretty close to what I thought.  That was the end of it for me.   After that my suite-mate had to socialize .. "oh, that was Herb's sister you know". "Herb's sister asks after you, hopes you're doing well you know." through the curtain.   Then she started up with the spontaneous visiting "hellooo, hellooo, hi, hi" .. as she's coming into my room and plunking herself down in a chair.  Uh boy. 

That's when I asked for the private room.

Update since I drafted this post:  She came by to say hello and to complain that her new suite-mate is incredibly noisy and the husband never leaves.  Ah ... the irony.

I Felt My Sock (and other exciting events this week)

I Felt My Sock
I know it doesn't sound like anything, but yesterday I felt my sock.  For me and physio guy it was jump up and down, dance around, big deal status. 

When I first got to the rehab unit two weeks ago, one of the first things physio guy did was a sensory test on my right leg.  He rubbed a rough towel, a kleenex and a pillowcase up and down my calf/shin while I had my eyes closed to see if I could determine which one he was using. While I was able to figure it out, it wasn't by texture, it was by degree of pins and needles shooting up my leg.  During yesterday's session he left me sitting on the physio table while he went to get something.  While I was sitting there, bored, I happened to move my right leg and I thought "wow, that plastic is cold".  HOLD ON !!  Did that thought just go through my brain?  Plastic?  Did I feel plastic?  Quick!!  Test !!  I grabbed my sock and rubbed it up and down my calf. ... I felt sock!.  Double check against the good leg, same feeling.

Houston, we have sensory progress.  She can feel the texture of her sock.

I Have All the Toys
This week saw a shoot up in the intensity of walking in physio, and oh, shockingly, an exponential increase in my walking ability (oh, no correlation there).  I should clarify that - I'm very, very far from walking without assistance because I still don't know where my right leg is, aside from "attached at the hip".  Ability is relative and according to those who know stuff, I'm doing well considering it's only been three weeks.

That being said, there's been a lot of practicing in the halls with my walker, and practicing in physio with canes ... I'm stubborn, and dedicated, and I really, really, really want to walk again, so every couple of hours I'm up doing something on my feet.  I do have to be careful because I'm at that phase where I'm most likely to fall ... confident enough to do things without full focus but newbie enough to make that one wrong move. Kaboom, crack head open, 20 pages of paperwork. I must continue to be careful.  But, in order to be able to practice this weekend, physio guy took a risk - he gave me new toys.  I now have a wheelchair, a "rollator" (see picture) and two canes.

They all have green stickers.

New Roommate
I have a new roommate. No more Mrs. Doubtfire (and I will dedicate a post to her ... there is so much to say).  I had quietly asked for a new room a couple of days ago.  No need to make a big fuss, just a quiet "when one comes available ... " to the nurse in charge. 

Yesterday there was an unexpected discharge (in a hospital, that could mean a lot of things), but score one for me.  Beds don't stay empty for more than a nanosecond, and Rehab was getting huge pressure from another unit to fill the bed ... gotta send you our person NOW !!  Talk about bullying ... wow, those cardiac, surgical, neuro etc. units, all think they're so special, and walk all over rehab.  Gotta move, gotta move, gotta move. My nurse lets me know I'm moving sometime in the next few hours and I'm packed in a matter of five minutes (which was fine this time because I was the one doing the packing), Because of the almighty rush, I get punted out to the lobby while they clean my part of the suite and move the new person in. Eventually the discharged person leaves, staff clean the room, and I move in.

My new roommate is wonderful.  I don't have to share anything, I can be noisy or quiet, and I will have the world of peace. My new roommate is the best kind of roommate. 

A private room.

Oxy Withdrawal

I know they don't want me to be a prescription druggie, but this place is big on stopping things before I'm ready.

In my conversation with my neurosurgeon this morning I'm told I need to come off the Oxy. Yipes!  40 mg a day isn't that much. But, I agree that I don't want to be on it, so I need a wean-me-off plan  because I already get withdrawal symptoms between doses. Solution  ... Tylenol 3s during the day, 10mg Oxy at night.  I'm not sure what I was thinking, exactly, but apparently he was thinking "as of now".

2pm rolls around, which, in this world of being 90 years old,  is pill time, and my little pill cup arrives with only one little, lonely pill in it. 

Me - "Hey ... what happened to my extra strength Tylenol?  What happened to my Oxy?" 
Nurse - "Well, the doctor changed your prescription."
Me - "Okay, we talked about that, but what does that mean, exactly?" 
Nurse - "It means T3s every six hours."
Me - "Already?"

Apparently.

I take a moment to ponder. Okay ... T3s are strong, I can handle that, and the small dose of Oxy at night is good. But, and here's the but, the Oxys were slow release, the new T3s are a quick hit then it wears off. I decide that even though my final daytime dose of Oxy has worn off, I'm just about to head to physio, so maybe I'll take the new T3s after physio guy has beaten me up and made my legs fall off.

This is when you discover that the pain pills you thought were doing nothing, are actually doing a lot.  By the end of physio it was two hours past my "used to take an Oxy" time and I'm running on no pain killers.  I had one nasty ache in my back.  Not pain, per say, but an ache of significant proportion. It's the first time I've really felt the surgery site.  Action required, I gotta get me some of them newfangled fancy Tylenols.

They seem to work. Now, if I could just get rid of the withdrawal headache.

They're Going to Take My Wheels Away

That's the only problem with progress. You do all this work to improve and to live up to new challenges, then the people in charge start to think you're doing well, slap a green sticked on your walker and take away your wheels.

Y'all have heard ad nauseam about my awful weekend and my crappy mood when I came back Monday morning. The day nurse took the brunt of my mood when he made the mistake of asking "So, did you have a great weekend at home?" He got the tears, the overwhelming-sense-of-loss drama, the I'm-not-going-home-until-I-can-walk proclamation, the my-house-sucks complaining.  My neurosurgeon got the same drama the next day, as did physio guy.   And then the ward grapevine kicked in and everyone knew I was miserable and that life sucked.

Drama or not, they don't care, and my discharge date is my discharge date no matter what I'm capable of. But at least physio guy took it to heart ...   "UP ... we're WALKING today".  And he meant it. Ditch the wheels, ditch the walker, ditch the motor control exercises, we're walking.  Here's a cane.

Wow .. okay.  Maybe I did say that I'm not going home until I can walk with a cane, but I didn't know you meant immediately!  Off we went.  I say that laughingly, because it was anything but.  In reality I didn't trust the leg I can't feel and I felt very physically insecure with so little to hold on to. It took a bit, but after a few turns around the room, I was walking with a cane without physio guy holding on to me. I use the term "walking" loosely. I think a more accurate word is "ambulated".

I cannot begin to describe what it "feels" like to walk on a leg that is giving no sensory feedback to your brain.  Rubbery. Bouncy. Strained. Mind of its own. My technique was fair at best, I had no push off with my toe, my knee kept locking and my gait was lopsided, but I was moving and physio guy was pleased.  I was a lot frustrated, because if I'm capable of that, why had we not tried that before?  I have done so little walking in physio - I did more walking at home with my walker than I had done in the week here. We're doing it now only because I had a hissy-fit.

With that success comes an up side and a down side.  Physio guy put a big green sticker on my walker.  Green for GO.  Green for "she can walk alone".  Green for nurses will let me walk on past and not stop me.  That's good news.  The bad news .. he banned me from my wheels.  To be used only for runs to the coffee shop and for excursions outside.  I have a couple more days, then they will take away the wheels for the rest of my time here.

And my surgeon took away my Oxy.
A girl just can't have any fun around here.

Extreme and the Shrink

"From what I've seen of you here, you're pretty extreme ... it's either yes or no, on or off ... there isn't much in between".

Wait for it .... there it is .... the knowing laughter from the people who know me. I've preferred to describe that trait as "I'm either doing stuff like crazy or I'm flopped on the couch." Or as "I run because I'm lazy".

The occupational therapist made that character assessment when she was talking to me about my weekend at home (again ... we're still talking about that weekend at home?). We were "discussing" my proclamation that I wasn't going back home until either the house is accessible to me, or I am accessible to the house.  In other words, modifications have been made to the house to accommodate my current disabilities, or my disabilities have been overcome to the point where I can function mostly normally in the house.

She was trying to convince me that going home in a week would be just fine, and maybe I just needed an adaptation period and I would get over the feelings of loss and everything would be okay.

Um, NO. Clearly you don't know me.  I rearticulated that I had been despondent, had lacked the will to do any self physio, and that sending me back there would just replicate that.  I'm not often successful with the "get over it" tactic.  Leopards, spots ... you've heard the analogy.

That's when she suggested that maybe talking to a shrink would help ... you know, add mental therapy to the physical therapy.

Wait for it .... there it is ... the laughter from the people who know me.  They've been suggesting it for years :)

My Nurse Hugged Me

Not sure what to say about that, exactly.

Its been obvious to the people around me that I have had a rough couple of days since coming back from my weekend at home. I haven't been the cheerful, friendly, enthusiastic person they are used to seeing. I think "morose" is the word that most closely describes how I've been.  My mood certainly caught the attention of the people who interact with me most - my regular three day nurses and physio guy.  They weren't quite sure what to do or say.

Except one.  The one back in my "Welcome to Rehab" post. I believe the quote is "The admitting nurse and I will not get along. I can tell that from the get-go." Even though I didn't particularly like her when I arrived, over the following days I asked about her job and listened to stories about her personal life. Solely for political reasons (see: it's good to be friendly with the nurses).  But somewhere along the line I decided she was ok. I think it was the day I overheard her trying to get important information to a doctor about a patient being discharged the next day. She was frustrated because no one knew what to do. There was no process for that. LOL go figure. THAT's what I think about.

But back to my grumpy mood and everyone not knowing what to do. Everyone except my admitting nurse. She decided that a hug was in order.

Not sure what to do about that, exactly.

Did it give me the creepy-crawlies?  A little.
Did it weird me out?  I think I was more surprised than anything else.
Was I totally comfortable with it?  No, not really.
Did I appreciate her sympathy and support?  Yes
What was my instinctive reaction? RUN LIKE HELL !!
Did I let her hug me?  yes
Did I hug her back?  Hmmmm, not really, but I didn't cringe.

My friends would say that's progress.
But they know not to hug me :)