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Thursday, February 28, 2013

Body awareness

When I was doing various rehabs it was mentioned that "yoga would help".  I do it now, but in the beginning it was a challenge due to balance.  I thought it wildly interesting that I could lose perception of a whole side of my body.  I tilted to one side, I was all bruised from banging into things on the left. But I was not aware of my tilting, and every time I hit something I was shocked.  I lost all ability to be conscious that I even had a left side.  My favorite* strange thing was my left hand letting go of stuff if I didn't watch it.  Just flat out dropping plates and cups filled with drinks.  It was almost as if it was no longer a part of my body, but an acquaintance that I had to keep an eye on so she wouldn't destroy my dishes and harm herself.   I also recall when I began driving that I had to be purposeful in using the mirror on the left side.  It was no longer automatic to check that mirror when merging -- I had to think about it with focus. I know those of you who have this understand, but I find it very hard to put words to losing a part of yourself.  There is no awareness that my left side existed.  No wisp of memory, no "I used to be able to do that".  When I sleep my head wants to tilt to the right.  It feels natural to lean that way.  Super comfortable, and comforting.  Since the stroke I have forced it to tilt left. Pretty much anything that feels void and awkward if I can make my body do it, I do.  And tilting left when I sleep is not a good feeling.  It is not that is hurts, or is uncomfortable, it just feels unsettled.  Like there is no recognition of my body existing in this position.  Not relaxing.  But I have done it over and over again.  Consciously turning my head to the left, moving the left side of my body, my leg, my torso. I can now fall asleep with my head to the left, but the muscles cramp up.  It is all a big process. What do they say?  More a marathon than a sprint.   I get that feeling of wanting to not care. To give up. To take the easy road and exist in my right sided realm.  Most of the time, I fight that.  When we do closed-eye practice in yoga sometimes I open my eyes and find my body has twisted to the right.  All I can say is that it is good I am stubborn and like to win - so when my body torques to the right and feels lovely... I pull it back in line or to the left where it does not reside in peace and make it stay there. 

Son Wilder's art project for school.
18 months later, looking in my car's left sided mirrors is back to being automatic. I pick up my left foot when walking so stumble less. I carry things without dropping them.   But I have way more bruises on the left side of my body that I don't know where they came from, and have joint problems in my left knee and ankle due to my loss of communication between my torso and brain.

This topic idea came from Grace  over at wrote recently about proprioception and her navigating therapies.  It got me thinking about all of this...

Thursday, February 21, 2013

Stroke Story Part 3

 Soon after I went into my doctors office (if you are in Seattle and need an excellent neurologist -- send me an email). Unable to walk straight, unable to stay awake and alert for more than a couple hours, entirely overwhelmingly terrified with how my future had just changed... my doc cleared boxes off an exam table (he had just moved into a new office), told me I wasn't on the right meds (given to me a week before by my crappy local hospital), told me they had misdiagnosed my type of stroke (nerds), and then looked me in the eye and said " In one year you won't even know this happened." Meaning that I would have no visible outward remnants of part of my brain being dead. I remember thinking he WAS NUTS... but he wasn't. Today I am close to how I was pre-stroke. Other than I weigh less, have a bit of short term memory spaciness, my muscle mass is different, I say things "differently" at times, and am on cursed cursed prescription drugs. But who's to say I wouldn't be a little ditzy and tongue-tied at this point anyway?
There always will be the life shift that happened on that day. I went from being in control of everything... farm, kids, finances, future -- to being in charge of not hitting the door jamb with the left side of my body when I walked through a door. I learned to accept help from others. My way of looking at life, disability, and independence took a tumble toward the real. You know, that we are not actually in control? I am very good at ignoring the unpleasant. Probably why I can own an old house... I can just merrily trudge through my home repair to-do list as an oblivious optimist. I read sometimes that when people survive something drastic they change their look on life. ( I have Tim McGraw's "Live Like You Were Dying, " going through my head right now). I thought all these life changing thoughts for about nine months and then realized : I wouldn't do anything different. This is the life I would lead if I knew I was going to die in a year. All the mistakes I've made, all the successes, my failed marriage... I wouldn't do it differently. I've got great kids, love where we live, have always had jobs that were ones I picked for interest and luckily supported me. I have not solved any world issues. I don't know how to stop young men from taking guns and harming strangers. I have not found the cure for cancer. But I have lived, gave friends hugs, had long conversations with my ma, laughed until I peed my pants (wait, should I be typin' that?), watched my kids grow with pride and love. I guess I don't record what is important to me anymore as the accomplishments that list my resume, and I used to. That is not what I will take to my grave, and that is certainly not what I thought of when I was in the hospital waiting for my stroke to do its damage.   

 I send out a lot of random prayers for health for other stroke recipients... since I received many from people I have never met.  And this is not like anything you can prepare for, so random prayers alongside whatever your health providers do, whatever your family can give,  however your friends can be there for you... it is all okay. 

Monday, February 18, 2013

Never Silent

My house is in a very quiet location.  There were many things more pressing and needing attention post-stroke, but one of the most insidious that nothing can be done about is the ringing in my head.  I know I am not hearing the sound actually, that something is damaged in my auditory area or processing area so I think I am hearing this incessant whining, buzzing, ringing tinnitus.  I used to love the silence of my home. But now when I am still, with no movement so nothing stroke related is apparent...I have a really loud reminder that something is amiss in brainland.  I am getting hard of hearing because I think everything has to go through and above that noise before it is heard.  (Or, alternatively, I could be hard of hearing because I listened to loud music over headphones in my youthful days....)
But the ringing is pure a stroke side-effect. Blah to you, stroke, for taking away silence.

Wednesday, February 13, 2013

The reports of my demise have been greatly exaggerated

When people hear stroke, they hear brain damage, and they hear mentally deficit, or physically infirm. And shorter life, and ill health.  I am getting tired of the assumptions made about my "condition. "  The first six months I was telling complete strangers I had a stroke. It was like I needed them to be as astounded as I was. I realize that there is a huge mental block that most people have comprehending that. And I see a lot of fear in them, as I have fear. I feel like a recovering alcoholic "one day at a time" because that is the only way I have found to embrace that fear. Very slowly. Every day I am alive and in my body is a step toward acceptance. I have learned not to tell people about the stroke because they have no where to go with that information. I still have to figure out where to go with that information. Here is a couple tales of what happens when I do tell.

Firstly, I met a former board member for lunch and told her that I had a stroke after her personal tale of a major car accident. When I met a different board member that I had a working rapport with a week later- he gave me a hug just a tad too long - and quizzed me mercilessly about "what changes have occurred in my outlook on life" "what was my love life like" "how were the kids handling my illness" and all sorts of strange uncomfortable queries.  These were board members that I got along well with at work, but they did not know my private life story.  When working, I don't tell people personal stuff because it is work : my livelihood, my professional career. 
He then went on to say they were talking, and understood what changes were happening with me because a mom - in her 80's- had a stroke on the same side of the brain.  And that they understood my ability to think was affected., because her ability to think was affected. I then got a call from him a couple days later to tell me of a volunteer who spoke glowingly of me... And how I needed to realize what a difference I had made to so many people. Does that sound like eulogy material to you?
Second, I have a dear friend that handled my stroke like this:  she mentioned that she would like all of us to go on a trip together "because she doesn't know how long I will be able to do such things. "

I am still here and talking at my kids about their homework (I purposely say at because they don't necessarily listen), taking the horses for a walk, getting the garden queued up, negotiating with doctors, working on my house (always the house... )  Yes, I basically had a big "STOP" put on my life while everything shifted into understanding a new concept of what my life is -- that it is finite and so fragile. I would not be called a fragile person normally, but now get to add that to my repertoire. I am nothing if not adaptable, even if taken there against my will.