Visual Communication

My friends gathered in Jackson Hole, Wyoming for the unaffiliated group of persons interested in visual communication for the 22 (or 23rd) year. In years past, I would have been there. Unlike the normal academic conference, it is small, informal, and fun. I am sad that I missed it. Friends posted pictures on Facebook of mountainscapes and mugging for cameras over beers.

my WTF moment in a wheelchair

I had an outing yesterday in my motorized wheelchair... which is no small feat. First I have to get my leg brace on. Then I have to chase my cat Chloe-- I use the term "chase" loosely because it amounts to bribing her with food to be sequestered in the bathroom before she gets out when I open the door of my apartment. I live on the second floor so I have to wait for an elevator. Then I have to find someone to help me open the door to my apartment building because the door is locked, making it non-handicapped accessible for someone in a wheelchair . Once I am out, I am relatively free. That is, unless I get run-over in traffic.

By and large, I don't complain about minor (or major) inconveniences. I have only so many words and so much energy to get through the day. BUT, when an old geezer speeds up in his car to get around my wheelchair, and he sees me, and I have the right-of-way, and he has a stop sign, and I in the middle of the street, and he looks at me like I am a criminal for crossing the street as he speeds up ... There is only one thing to say, "what the F@#$!"

Just two blocks before that one classy young man on his bicycle (13 or so), stopped on his bicycle to let me cross in front of him, I smiled, and without saying a word he waited for me to get safely across the street before catching up with his friends. There is only one thing to, "thank you!"

I don't know what I don't know

Given my penchant for being "good at education" it should come no surprise that I like testing. Over the past year or so I have been tested in all sorts of ways. The first test was surviving a stroke. The second test was convincing myself, friends, and family that I could adapt and accommodate to my new reality. It would take time. But, heck I have that!

Which brings me to my last series of tests that are the kind I am used to... tests of verbal skills, memory, visual skills, problem solving, and so on. All tests somehow test my cognitive abilities (or DISabilities.) My last report sums things up:

"This profile reflects mild left hemisphere and bilateral frontal cortical compromise, the pattern of which is most consistent with the left parietal stroke she sustained in November 2007. This profile appears stable and, if anything, may improve with further neurologic recovery."

Which gives me hope that I will recover a bit more of my 'mojo'-- whatever that is!

golfing, a memory

I was never a very good but I loved to golf. I putted very well. I hit a driver straight and often a fairly good distance. But, I did horrible on the fairway. Nonetheless, I loved to play the game. Or, just hit a bucket of balls from a driving range. It's the season to see lush, green courses on television and more than anything it makes me sad. I've adapted pretty well to my disability but not when I see a golf course.

my friend Michael

My friend Michael came yesterday for a visit. It is always good to see him. Although it's not quite the same as it was. We were "in love" at one time. It was before before my stroke and after my divorce. Funny how time seems to be all about before and after. 

He and I coined the phrase "right brain cafe" to explain my penchant for living in a creative world, largely of my own making. He is an analytic kind of guy. He would visit the right brain cafe from time to time. But, he was more amused than comfortable there.

He broke things off a couple of years ago, and I poured myself into my work.  I worked and I worked and I worked. The pressure I felt was ridiculous and abusive but I didn't feel like I had an alternative. So, my head imploded. Not a good very solution. 

note to self

The biggest problem with being a smart-ass when one communicates slowly is that it takes me forever to get to a punch line. I have the same sense of humor that I did before my brain imploded. Note to self: I may be misunderstood. Having had a stroke is NOT funny, but some things I have endured ARE. Like waking up from brain surgery, my head completely shaven, and my brother telling me, "My God, you look just like dad." Or, my first conscious thought when I discovered my head was bald, being pissed off because I had a new haircut and highlights which cost me a fortune and looked stunning. Now it was in a baggy on the table in the ICU.

seeing my brain

I saw my brain the other day. I mean I saw a visualization (specifically a CT scan) of my brain. It was very cool, and also slightly frightening. My primary care physician, Dr. O'Dell, reviewed my recently taken CT scans with me. It seemed like the right thing to do to satisfy my inner-geek. I like seeing things to understand them better. I am a right-brain learner and always have been. I am a graphic designer after all. What I didn't fully realize is how much of my left-brain was damaged by my stroke. I have to admit I am impressed that I have made it as far as I have.  Who knew I was that determined? Stubborn? 

Let me explain it to you like this, when the neurologist told my loved ones to prepare for a "cataclysmic" outcome, he wasn't kidding. The only good thing was that I didn't listen. I NEVER have listened. Which did me no good at all with my colleagues (you know who are) and my husband and countless others...  But, I have to pat myself on the back, with my good hand of course, that relentless, dogged determination comes in handy sometime.

dreaming

When my stroke first happened I quit dreaming, which I guess was a result of my brain being in turmoil. I didn't realize what a loss that was until a nice women named Ann, who was 7 years out of her recovery from a similar stroke, asked me whether I was dreaming yet. The answer at that point was no. It was a good 6 months in recovery when I had my first dream.  Now I am happy to report that I dream regularly... mostly pleasantly. I had a dream the other night that I was teaching again and I was trying to explain to my students to have patience with me, it would go slowly, I had trouble finding the right words, but I was an "expert" in visual communication ... I had the slides to prove it ... but, I realized what a long semester it was going to be.  Then I woke up. 

getting back my groove

I want to get my groove back! I want more than anything to be alert, and fully sensually aware. I feel the fog of Depacote descend on me. It has made me stupid... like instantly... like a blonde or a Minnesotan... not that there's anything wrong with that. But, honest to God I feel like "thick as a brick" when I am taking this stuff.  

seizure

I had a seizure yesterday and ended up spending the night in the emergency room. That was the first one since I had the stroke. I was put back on Depokote and will have both an electocardiogram and a CAT scan today. I am sad that I have to take Depokote again. It makes me feel dull, thick,  and vague. I have been off it since November and felt great... like a human again. But I had a seizure again so not only can I not drive, I have to take this damn drug again. 

memory and attention

I have a pretty good memory. I can remember all of my life before my brain exploded. Which means I am fully aware of what I can no longer do. I do have a tendency since going through my stroke of "zoning out" sometimes when things go on around me. That doesn't bother me much, but I can tell it bothers the fast talkers in my life. It is not something I am fully aware of. It happens when I am trying to access language. It is still painfully hard to access language specifically word-finding. But, who needs words anyway? 

visual problem solving

There are some things that I can do as well as before my brain had the big hiccup. I still have my sense of humor, and by all accounts - according to Dr. Halter - I still have excellent skills in "visual problem solving." That was the highlight of my recent conversation with her. I don't know what I can do with that skill because my speech still impedes me and my right arm is still not working, but it is good to know I am still "excellent" at something.  Today the fact that so much of ME is no longer "excellent" is bugging me. Like getting a bad grade, or failing an important test, I find the reality of failure excruciating. I am such a product of higher education! 

my doctors

One of the advantages of meeting the many doctors trying to negotiate my care, they write up a lot of reports. I have reports from physical therapy telling me that I had plateaued, occupation therapy telling me that I have plateaued -- which is code for "they no longer can do anything more for me."  Speech therapy can't help access language any faster. I read voraciously, mostly about brain injuries and healing.  I'm trying to make a web site, I have a Facebook presence, I use Twitter, I use Skype to talk to my friends... I am beginning to feel like a geek again. I still get tired a lot. But, I am largely happy.  

So, I had a meeting with Dr. Halter who works with physical medicine and rehab. She coordinates all things connected with my brain and what I can do to optimize my life. Within the last few weeks I got various test from Dr. Dunaway, a neuropsychologist.  They tested the usual stuff - vocalulary, word finding, counting backwards from 100, puzzles of various kinds, etc. They tested memory - both long and short-term and attention span. My acuity at visual problem solving.

The good is I am doing well. The bad news is I have just about average "executive functioning skills." Meaning, in my case, I will never be a professor again. I knew that. So, that's not a shock. The only thing that bugs me is being called "average." I am not used to that - that is ego talking! And, I am sad because I would like to think that I am more evolved than that. 

in the meantime

I didn't mean to wait this long before updating my blog. Really. I'm delighted that I have readers that keep me on my feet. There's no excuse, really. I just did think. There seems to be a lot of that going around these days. What has happened since I last wrote? 

Natasha Richardson died from a freak brain injury. A friend was diagnosed with brain cancer. My friend Kay's boyfriend has something called "chronic ideopathic neuropathy" which is sapping his strength and he can barely walk. I am reminded once again how fragile this life really is. 

one good laugh

My friend Sandy has always made me laugh. Laugh hard. And, laugh in the face of irony that would lead to despair in a lesser person. I love laughing with her. The truth is I love laughing with anybody. Not silly laughter; real laughter.  The kind that has an inescapable truth to it; forged in a moment of realization that life is all about laughing in the face of danger. Or, at the very least stupidity. For all the people that made me laugh throughout my life... thank you.

as good as it gets

Nothing is the same as it was before my brain exploded. Many times I just feel lucky to be alive. But, whenever I am feeling down or frustrated I admit to worrying if this as good as it gets. I can't afford emotionally give up or give in to disability but sometimes it is a daunting task.  In a year's time I have had to re-learn how to talk, how to walk, and move my paralyzed right arm.  I've had endless amounts of rehab (most of it excellent) but having been told there was nothing more that physical therapy could (would) do for me, I'm feeling overwhelmed. I need to exercise. And do all the exercises that I can by myself. Waiting to get in to the University rehab program is a goal, but it's currently full.  Next summer, maybe. In the meantime, I wait. And try not to be frustrated.

health care; a scary story

By all accounts, I had extremely good health insurance through my work at the University of Nevada. But even good coverage wasn't good enough to spare me from the horrific expense of having had a stroke.  I am forever reminded of what an "expense" I am every time I hear from a hospital, rehabilitation center, doctor, or dentist.  In spite of having very good health insurance I'm an "expense" that needs to be "managed." Much of that management has fallen on my brothers during the past year.  Michael and Morgan proved to a be an able tag-team of advocates involved in sorting out my life. Nonetheless, had known that I was going to be disabled I would have a better job of preparing.

another domino

I had a massive bleed to the left parietal lobe of my brain, I would later learn what that meant, but when in the emergency room I was a critically ill patient.  The nurses and doctors and police officers were talking about all my injuries. I must have looked frightful because one of the policemen took pictures. I remember thinking "this can't be good."   

A nurse was asking me if I understood where I was. 

I wanted to say, "you mean, you don't know? Get me out of here!" 

But I couldn't talk. 

A young policeman talked to the nurses about me. I remember thinking that I could tell him there was nothing wrong with me... except, of course, that I was uncoordinated... and, oh yes, I had a bleed in my brain.

The nurses were great! They talked me like I was a person; they talked to me as if there was nothing wrong; they talked TO me. I had yet to learn that not having a voice, a literal voice, was scarier than being paralyzed.  

facebook

Facebook has enabled me to connect with many friends -- new and old. It is a good way for me to connect with people given how difficult it is for me to type and talk now.  But, I must admit that I much prefer to talk.

when the domino falls

When one domino falls, they all fall.  I was in intensive care now. Not working as professor, not working on my "stuff", not working... In one ironic twist of fate I became a domino. I had fallen and I couldn't get up. I was a patient now. For a control freak like me that was a serious concern. Who make sense of things? Who would take care of my dogs? Who would take care of my house, my car, my students, etc.?  My identity changed when the domino fell. 

I HAD been an associate professor teaching visual communication at the University of Nevada, Reno. I had many colleagues around the world who valued my work. I had a book that I was about to finish. I had a column to write for a research journal.  And a research paper that I had finish. Oh, and several places to go in the next few weeks to interview. I was in throes of seeking tenure and I was not at all certain I could survive the politics. Like any good lemming I was determined to scurry so if all else failed I would survive.  This was right after Thanksgiving.  I just had to make it until the first part of January... 

blog, blog, blog

The thing about this form of communication it's really never finished ... like real-world conversations about politics, the free-falling economic crisis, or sex ... one can never say enough, unless of course, you are me. The day my brain did the big hiccup I lost the ability to speak.  I could UNDERSTAND speech as well as ever.   My hearing was fine. Eyesight was fine. I could READ. I simply could not speak. So it seems logical for to use this format to ''talk" since I can "talk" in words while I relearn how to speak.

Now... back to my story...

The ambulance took me to St. Mary's Hospital in Reno. I remember the trip. Much of it anyway. I remember feeling relaxed. I remember being amused by all the fuss that being made about my "condition."  I couldn't tell anyone, but I was going to be fine. Clearly other's did not agree with my prognosis. I was tired. Very tired. All I that I could do was smile. And sleep.

calling on the better angels of our nature

1. I am now completely certain that angels live among us. They take the form all the family and friends and the caregivers whose love came through in spite of all the things I couldn't help you with.

2. I am also aware that I'm not angel... yet. But, I like the idea of simply "calling on the better angels of our nature..." as Obama says in his very meaningful channeling of Lincoln.

3. I'll get to my blog after I recover of staying up all night to watch the Obama inauguration festivities.

Throwing my body down the stairs

Of course I mean for that statement to very dramatic because it was.  By the third day of just laying in my bedroom I knew I needed water and I knew I was dying. Yet, I couldn't die without giving my girls a reasonable shot of barking loud enough that my neighbors came to rescue them. I know how odd that seems. I could feel myself slipping into that "peaceful place'' and I fought the urge to go there until I took care my girls... even though they Yorkshire Terriers. They were beloved friends to me -- Emma and Lola.     

  

First, I had to crawl from bedroom down a hallway to the stairs.  I remember getting rug burns on elbows and knees. I'm not sure how long it me get there but I'm sure it took a long time. I had to rest, continue crawling, rest, crawl, rest, and crawl some more. When I finally got to the stairs I had to figure out how to get down.  So I did what came naturally to me -- I went headfirst down the stairs to first landing. My face got scuffed up, I broke a couple of ribs, everything was sore, but I was not dead... yet. Then I went down the second landing. This time I had more obstacles to overcome -- crashing throw a doggie gate, and taking out my beading stash was just the beginning. I had had installed wood floor downstairs -- when I landed I can remember just how hard they were.   

I don't know exactly what happened next. I heard knocking, and doorbells ringing, and my friend Doug opening the door, my girls were barking, then the ambulance came...

Napping

Tired. I felt tired. So, I napped while my dogs, Emma and Lola licked my face.  Maybe if I rested a bit I could get "my girls" some food and water. They looked scared. But, maybe they were just mad at me... I was used to that. They were Yorkshire Terrier after all.  They unlikely to rescue me like Lassie rescued Timmy when he fell into "well.''  No. My girls we spoiled rotten. That gave me a certain amount peace. At least I didn't expect them to get out this mess. So I napped. 

 

I'm not certain how long I lay in a sort dreamworld but I noticed that when I slept I could not dream at all. When I was awake everything seemed like a dream. It occurred to me how odd that was. I was at peace, but I was conscious just how dangerous that peace was. It was as if my body was fighting this overwhelming urge to surrender to that peaceful place. I was worried about that dreaming-thing. I knew that wasn't "normal." Then again, what did I know about "normal?"

So I waited. The sun came up and streamed in through my stained glass windows and went down again. My phone was ringing. Ringing. But I couldn't reach it. And, I couldn't speak. Then the sun came up again. And went down again.  My body felt detached and stiff.  I simply had to move.  Tomorrow. 

too much drama

I can only write about a paragraph now and it can take me a ridiculous amount of time. TIME is one thing I've become keenly arrow of. I don't think about in a maudlin, morbid, or self-pitying way -- I know that is a miracle that I am still breathing.  But I am irritated by the amount of time it take me to do things.  Some things don't change.

The day my brain did THE BIG HICCUP, I became much more aware drama-- or, more specifically what I was going to do now that my ass was on the floor in my bedroom upstairs, I was now unable to speak, oh yes, and my right side was now paralyzed. I knew that I was going to something dramatic to get help. But, first I had to take a nap. Yes, I needed a nap. 

what I learned, and have to learn

1. That everything can wait. 

2. That speaking is often over-rated. But re-learning to speak is literally like learning a foreign language only harder.

3. When life seems impossible, stressful, chaotic, etc. remember it could get worse... or better...

but inevitably things will change.   

4. It is a very good thing that have a sense humor and that it didn't go out when my brain imploded.

more insights

Okay, now that I have my own attention I better explain a cerebral venous attack, or hemorrhage in my head, or bleed, or stroke feels like.  I had no headache, no sudden warning signs, just a gradual feeling that something wasn't right.  First my arm got weak, and then my hand failed to grip the phone that I was trying to use.  But that was okay since I had lost the ability to speak.  Oh, I KNEW WHAT I WOULD SAY if I could speak, "oh fuck," comes to mind. I don't mean to make light of losing my ability to speak -- it would have come in handy -- but I was much more concerned with what was happening to my body.  While I walked from my bedroom to my office and back again, I felt my leg getting weak and before long it wouldn't support me at all.  So I did what anyone in similar  situation would do -- I fell down. Gravity got the best of me.  This was a hell situation. 

stroke of insight

I lifted this idea from the book by Jill Bolte Taylor, a Harvard-trained neuroscientist, who experienced a massive stroke when a blood vessel exploded on the left side of her brain. Like the author that very thing happened to me in November 2007.  The best way that I can explain what it felt to go through --- "something mysterious" was happening to me and I was pissed.  Maybe that wasn't the right thing to feel at the moment when my head was bleeding into my brain --- but this my instinctual, visceral reaction. My house was mess, I had "numerous" academic things to attend to, my dogs where ready to go out, etc. I had VERY important things to do with my VERY important life.  Oh, I knew what THIS was ... but it couldn't be a more inopportune time.  

welcome to my blog... you will notice that it is entirely lowercase ... and may also lack appropriate spelling, grammar, and punctuation ... not because I'm lazy...  but rather, in november of 2007, I had an anuerism commonly referred to as a stroke.  The stroke affected everything... except my sense humor, my sense determination, and my artistic ability.  This is my story.