1. I should have titled my post on We Made It To December, "Why I've Decided To Take Up Swearing" instead. ;) That might have drawn a few curious readers! :D
2. As an author, I often "think" in written words. I am constantly composing blog posts in my mind, some you end up reading, others you don't. This morning I thought up an opening line to a story. As I was digging some paperwork out from under a dresser, I kept getting caught up in electric wiring plugged in down there. "The tangle of cords mocked her efforts to keep a tidy house..."
Enough writer's randomness for the moment. What I really want to talk about is the very "mixed bag" of living with neurological injury.
About a year+ before the strokes. I can't find any pictures with longer hair and 40 pounds lighter than this picture.
When I first stroked, I LOOKED badly disabled. (Hmm, maybe because I actually was!) I had a paralyzed eye glued up against my nose. I was majorly sight- and hearing- impaired so was always trying to angle my eyes and ears to see and hear as well as possible. I was 100% wheel chair or bed bound. I really could not control my body well at all, neither to move as instructed nor to relax muscles. I couldn't turn my head without great effort (and sometimes not even then) and battled simply to keep my head still and upright on my shoulders.
I got SO skinny, was terribly fragile. And this shot shows that left arm refusing to function too!
About a year after my strokes, when I still absolutely hated the camera and mirrors (why I have so very few pictures from those first couple of years) and was still striving so hard to come to grips with the utterly changed image I saw in my own reflection, I gave my husband the very most (emotionally) costly gift I could think to give him, a professional photo of myself.
They say you are harder on yourself, much more critical, than anyone else. When I look at that picture (or at least every time I have before today's critical analyzation), all I see is "stiffness". I do not look relaxed. There is no natural flow of motion. (Today I see a fairly even smile and sparkly eyes that actually track together by this point too, but until today I've just seen the deep, painful zits that refused to be fully covred and tension.) I KNOW how hard it was for me to sit still for that shot. To hold my head up straight. To not shake. To try to relax enough to smile and mask the overwhelming pain and mental stimulation of functioning out in public, sitting in a dark room with bright flashes of light, holiday crowds, etc. That day was a huge, brave step for me.
|Dec. 14, 2011, the day I came home from the hospital to a hospital bed in my living room.|
I knew I was so much better off than I had been a year before, but I still was SO far from being a functioning member of society.
Fast forward three years, to this winter. This is where the "mixed bag" part comes into play. There was a woman I had interaction with at least once a month or more, for a year or so, prior to my strokes. I saw her again a couple weeks ago and said hi and reminded her of who I was. She said, "You look great!" Now how much of this was just social nicety and how much was sincere, I don't know, but it got me thinking...
I had replied, "Well, actually I had six strokes since you last saw me, about 4 years back." She has medical background so I was expecting a look of concern/shock like I am so used to seeing on medical faces when they here this news. Instead, she seemed totally un-flustered, maintaining that I was looking better than last she saw me (pre-stroke). That's when it hit me, that while I still can look kind of "off" at times and while spending prolonged amounts of time with me would reveal more and more of my remaining stroke deficits, I no longer look so noticeably disabled. I suspect that woman figured I just had a series of TIAs or "mini strokes." I momentarily felt I should explain how bad things had actually been, how far I had come over the past four years. Then I decided it wasn't worth it, that she has been enough of a "fringe relationship" in my life so as to not even know I had stroked, so if she didn't see me as disabled, why should I make a point of explaining? (Take that Red Robin waiter!)
This picture, taken about a month ago, is the first time I actually felt I looked totally at peace in any picture since the strokes. I still don't move a have easy muscle flow like before the strokes, but I feel like the majority of my deficits are neurological and in emotional processing, more than physical (though I still have dizziness, major balance issues and walk with a cane, have a left ankle that is weak and rolls out from under me, left knee that is often quite painful, really struggle with hearing, vision is still doubled peripherally, can't turn my neck far or easily enough to look over my shoulder (and when I manage, everything I look at is doubled anyway, so not worth the strain of trying!) and continue to have some issues with tear ducts, mouth numbness (especially too numb to talk clearly or control drool when eating something cold) and swallow and lack fine motor skill of my left hand) or mental (memory is totally unreliable, still don't feel trustworthy to drive, logic and reasoning skills often are impaired, 4th grade homework often surpasses my mental limitations).
What you can't see are things like 4 different Christmas parties I wanted to attend this month but won't be going too. Nor the sadness in my husband's face as he wisely told me that he wanted me to stay home from these celebrations this month, that all the sounds, lights, activity, social interaction, potential latex exposures, just weren't the risk, my physical pain and backlash days in bed, the emotional strain to our whole family, in the aftermath.
Tonight was the rehab hospital's annual tree lighting ceremony, a tradition they started in 2011 while I was an inpatient (link goes to hospital's own picture from that night). I love to go each year, sort of as a marker of how far I've come since I lived there, I called this morning to cancel my RSVP and initially used my sick son and own scratchy throat as my excuse, as that would be what I would need to tell anyone in any other walks of life, in order for them to understand a true medical need. Then I realized who I was talking to and added, "I am having a hard time neurologically right now, with crowds and lights and sounds," I figured if they couldn't understand, no one would! (They totally go it though!)
I've had several conversations lately trying to explain why I cannot use the phone for more than a minute or two and not for pleasure visits because of hearing and processing frustrations. That's a major lifestyle change for me as I used to talk on the telephone by the hour!
I hear, "I would haven't had known if you hadn't told me!" to nearly anyone I tell now, so I guess it is not a surprise that when people can't immediately "see" I'm disabled anymore, they just aren't going to get it. This is the chronic nature of brain injury.