Monday, December 23, 2013

Effects of Stroke

I got off very lightly regarding the negative effects of my stroke.  My vision and hearing were unaffected, and the lack of sensation on my left, affected, side is more of a nuisance than a handicap.  My balance came back quickly, as did my control over my left side.  And that enabled me to swim and work out with weights to the extent that my left and right sides are roughly equivalent in terms of strength.  Except for the spasticity, I’m physically about the same as I was pre-stroke.
Similarly, my cognitive abilities were not impacted to any significant degree.  I didn’t get off completely unscathed, though, and the ways in which the stroke did affect me were very interesting, and odd.

Left Neglect  Evidently this is common with right hemisphere strokes, because the therapists began mentioning it to me the first day, even telling Polly to stand on the left side of my hospital bed in order  to  force me to take notice of what was happening on that side. 
I didn’t really understand what the fuss was all about until I got to inpatient rehab.  Each time the therapists or the nurses got me in the wheelchair to take me anywhere, they would ask me where was my left hand, and each time I would have to look for it, usually finding it dangling perilously close to the spokes of the wheel.  Even after I was able to use my left hand to assist with propelling the wheelchair myself, I would often bang it into door jambs or other barriers.

It’s not that I had any problem seeing what was on my left.  I didn’t have issues with my peripheral vision, or experience a vision “cut” on that side, it was more like my brain didn’t register anything on my left side until my attention was called to it.  Once it was, what was on my left appeared  just the same as   what was on  my right.   
Soon after I returned home, Polly and I went to our son’s last home swim meet, when the seniors are honored.  We were seated near the starting blocks and were discussing whether or not the high school principal would attend.  “There he is,” Polly said to me.  I asked her where he was, because I didn’t see him.  “To your left,” she said.  I looked to my left and the crowd on the other side of the pool appeared, including the principal who was talking to a group of parents.  It wasn’t that I hadn’t seen them, it was more like that entire side of the pool, and all the people there, hadn’t existed to me before it was pointed out to me. 

Another manifestation of my left neglect occurred numerous times when I was in the bathroom.  The hot water in all our bathrooms is controlled by the handle on the left, and I would often leave it running.  Polly learned to check it when I came out and point it out to me so I could go back and turn it off. 
Neither of these examples constituted anything serious, of course, but they did indicate the possibility of dangerous situations, especially  when I started driving.  I never had any problems, though, because I was aware of the danger, and made a conscious effort to look left, then left again, then again, then again, before I pulled out into traffic or changed lanes.

The left neglect gradually faded away and was completely gone within a year.
The Condition I Don’t Know the Name of  It wasn’t until I came home and started doing some research that I read about an effect of right-hemisphere strokes that was described as the inability to place specific occurrences in the context of a whole.  As soon as I read it, I realized I had already experienced it.  In inpatient rehab, I would make it a point to watch my beloved Kentucky Wildcats basketball team whenever they were on television, which, owing to their excellence, was often. 

During that four-week period, though, I knew something was wrong when I watched the games.  I knew I was missing something, but couldn’t quite identify what it was.  After reading about this stroke effect,  I immediately knew what the problem had been.  As I watched the Cats play, and almost always beat, their opponent, I wasn’t able to place the game within the broader context of conference standings or national rankings.  I was missing how the particular game I was watching fit into the big picture.  It was this deficiency that I was sensing as I watched the games.
Another instance of the Condition I Don’t Know the Name of occurred the first time I had to get up early to drive to KHC, which is located two hours away in another time zone.  I hadn’t set an alarm to wake me up, because I don’t use one.  I’ve always had the ability to wake up when I want to.  This time, though, there was a problem.  I woke up at 3:00 am and for the life of me couldn’t figure out when I needed to get up.  My calculation had always been Time of My Meeting at KHC minus Two Hour Drive Time minus Half Hour to Get Ready adjust for  Time Difference equals Time to Get Up.  But this time I couldn’t make that calculation no matter how hard I tried.  It wasn’t that I couldn’t do the math, it was that I couldn’t account for the fact that time was passing as I lay in bed trying to figure this out.  I couldn’t place the time where I was in a larger context of the time as it existed anywhere else.

I finally drifted back to sleep and the next time I woke, I got up and hoped for the best without trying to make the calculations.  And it turned out to be right, and I got to my meeting on time, and never experienced any further problems with it.
So, I throw those thoughts about two of the relatively minor, but interesting, effects of stroke out there, and maybe someday someone who has experienced a relatively small, right-side cerebral stroke will come upon this post and will be helped in some way. 

Sunday, December 15, 2013


Sensation is a funny word; it has several meanings, one being something fabulous.  But I’m using it now in the sense of feeling: specifically, the physical sensation of feeling stimuli on the skin.  My stroke affected my ability to feel sensation on the left side of my body. 
I had both a CT scan and an MRI on the day of my stroke, and another MRI two days later when the doctors feared I might be having another.  Thankfully, though, I only had the one.  I’m pretty sure I was never shown the results of either the CT scan or either of the MRIs, but I can’t be sure, my memories of that first week are pretty foggy.  After I came home and began to be curious about strokes, I thought about asking to see my MRI, but the hospital is almost 100 miles away, and I never got around to it. 

Polly was shown them, but her life was in the middle of a major disruption and she remembers very little.  She does remember she was told the area of the bleed was the size of a cottonball, but I remember her telling me it was the size of a marshmallow.  Given my post-stroke brain fog, my memory could be wrong, or another possibility might be that it was the size of a cottonball at the regional hospital where I was first taken, but had grown to the size of a marshmallow by the time they got me to the stroke center in Louisville.
I do remember the neurologist, during one visit to my hospital room, telling me that my stroke was, ”about there,” and touching me about halfway between my right ear and the top of my head. Based on that scanty information and my even scantier research, I guess that my stroke primarily affected the parietal lobe, which among other things, interprets impulses transmitted by the skin. From the very first, I realized that something was wrong with the way things felt touching my left side. 

I told the doctors that my left side was numb, because it was just too complicated to try to tell them how it really felt, and because I didn’t have the vocabulary to tell them.  The best description of it came from another stroke survivor later during my reading, but I don’t remember who it was, or where I read it.  I wish I did so I could give attribution.  He said that it felt like the skin on his affected side was gone, and what touched him on that side was touching raw muscles, blood vessels, and nerves.  And that, I suppose,  comes as close to describing how my left side feels as anything can.
Like everything else about stroke, it’s complicated.  Except for the very lightest brush, I know when I’m being touched on my left side, but I don’t feel it through my skin, I feel the pressure of the touch, and it’s unpleasant, like I’m being touched on raw muscles and nerves.  A few weeks after my stroke, my wife was gently stroking my left hand and I stood it for as long as I could before I had to ask her to stop.  Being touched anywhere on my left side sends me up the wall.

The only thing I can figure out is that the remainder of my brain interprets the existence of the  dead spot that used to receive and interpret impulses from the skin on my left side as there being no skin on that side.  So, I now “feel” touching as if it is happening to the layers lying below the skin.  Even though it’s hard to understand, my left side is both numb and hypersensitive.  Not only do I hate to be touched there, I don’t even like for anyone to stand on my left side.  Try explaining that to a doctor.

Another weird thing is that the line of demarcation separating my affected left side from my unaffected right side is clearly defined.  It goes precisely down the center line of my body, front and back:  on the left, no skin; on the right, normal.  And when I say precisely down the middle, that’s exactly what I mean:  the dividing line goes down the center of my forehead, my nose, chest stomach, and on down.  Makes for some interesting tactile experiences. 
I wonder if this lack of normal sensation on my affected side is the reason the spasticity has affected me so powerfully on that side, even though I have normal strength and control.  I think someone should research that.

Saturday, December 14, 2013

More about Guilt

I’ve never been too critical of guilt.  Sure it can be harmful if taken to extremes, but so can any other emotion.  Kept within reasonable boundaries, it can be just as beneficial as trust, loyalty, love, hate, tolerance or any other.  It’s not the case that there are good emotions and bad ones.  They’re all useful; they all serve a purpose, otherwise they wouldn’t be part of us.
Guilt is, actually, especially important.  It serves as our moral compass, letting us know when our actions have injured others unnecessarily.  I have felt guilt at various times in my life, and always considered it justified.  It always appeared after I did something I shouldn’t have, a thought or an action that I regretted, or should have regretted.  If you never felt guilt, you'd be a Republican, and no one wants that.

I carry a lot of guilt now over the fact that I contributed to my stroke.  I knew my blood pressure was high, but ignored a doctor’s advice to take blood pressure medication. I was stubbornly determined to bring it down by diet and exercise.  With the result that I had a hemorrhagic stroke, causing a great deal of worry and stress to my family.
Another belief about guilt that I disagree with is that it paralyzes us, holds us back, keeps us from moving on, etc., etc.  This may be true for some people, but it isn’t universally true, because it isn’t true for me.  I feel guilt over my refusal to take the necessary steps to prevent my stroke, but that hasn’t stopped me from moving on with my life to the best of my ability. 

There is a human tendency to regard our own reactions and responses as being the same for  everyone, but for subjective experiences like guilt that’s not always true.  I, also, don’t try to deny the guilt, or make it go away by “forgiving myself” for what I did.  I deserve to feel guilty about it, and in fact it gives me incentive to recover to the very greatest extent I can. 
I let the guilt motivate me.  It’s part of the way I try to live:  to see the world as it is, and to see myself as I am, and accept the consequences of my actions.  Then move on with living.

Thursday, December 12, 2013


A funny anecdote.  I went to my department's potluck Christmas luncheon yesterday.  Polly made two desserts for me to take:  pumpkin cheesecake and iced pecan brownies.  Both were great.  Things got started at ten, and we didn't eat until noon, and during that time, we discussed issues we were facing in our work.  One woman, with whom I don't work that closely, talked about problems she was having with HUD's website, which we use to report on our housing programs that involve HUD funds.  There were sixteen of us sitting around tables arranged in a U shape listening to her, and at one point she said, "...and I posted the report and am sure I saved it,  but the next day, I went back to make some revisions, and there was nothing there! All the data I had entered was gone!  I tell you, I had a stroke!"

No one said anything, the only responses were head nods as everyone empathized with her predicament.  Into the silence I said, "That's not funny."

The woman paused, but didn't acknowledge my comment.  Several others, though, who know me well and knew that I was kidding, laughed.

The room was cold, and by the time we ate the spasticity had made my legs stiff, so I remained seated while everyone else formed a line to get their food.  A young woman asked me if I wanted her to get me a plate, which in Kentucky means fill a plate with a little of everything and bring to me.  I told her no thanks, that I was just waiting until the line got shorter. After we ate, we played some Christmas-themed games, then I left at three for the long drive home. 

Everyone there knew I'd had a stroke, including the woman who made the comment about having one.  She never mentioned it, though, and I got the feeling she was embarrassed by having said it.  I thought about telling her I wasn't offended, but never got around to it.  And as for the young woman who offered to get me a plate, I wasn't offended by that either.  To me, that just showed she was raised right, and knew basic good manners. 

I tend to be a private person, but I'm not sensitive to comments about my stroke, or stroke in general, as long as they're not made in a purposely derogatory manner.  Heaven knows I've made my share of unthinking comments that I've later regretted.  After having a stroke, my life is too short to spend any remaining part of it being offended by trivialities, or dealing with people who wallow in the trivial.

Tuesday, December 10, 2013


I believe in the concept of tipping points.  I’ve seen it in action in the world and in my own life, when experiences, or phenomena that are part of a continuum suddenly tip from one end and become part of the other.  So it is with disability.  Part of my job of developing new supportive housing projects is to educate housing developers about disability.   One thing I always stressed to them was that the world isn’t “us” and “them”, the world isn’t divided into the abled and the disabled.  Instead, we all exist on a continuum with ability at one extreme and disability at the other.  As we age, we journey along the continuum, but at any second, any of us, due to accident or illness, can tip from one to the other. 

Except for a broken ankle when I was a teenager, my stroke was my first experience with a disabling condition.  And what a condition it was.  For the first two weeks, I couldn’t even sit up in bed.  I made rapid progress, though, and after five weeks I was walking with a cane, and after eight weeks walking unassisted.  I’ve continued to make steady progress in my recovery, even though spasticity has slowed it somewhat.

The area where I notice the biggest difference in my physical abilities now compared to what I used to be able to do, is working around the house.  I still manage to get most of the needed repairs and maintenance done, just slower and with more effort.  There are some things I won’t even attempt, though, like going up the ladder to clean out the second story gutters.  I used to do that without a second thought. 

I live in southern Kentucky, a part of the country not north or south, sort of on a continuum between the two.  Indiana residents consider us southerners, Tennessee residents consider us northerners.  Similarly, our winter weather is  between the rain of the south and snow of the north.  We get a lot of ice. And our latest ice storm was this past weekend.  As ice storms go, it was minor, but it did deposit a layer of ice thick and heavy enough to bring  down a neighbor’s tree.  The neighbor lives across the street, and some of the tree made it to our yard, but only the topmost branches.   Since it blocked the city street, the city road crew was soon out to saw it up and haul it away, leaving us with only a bit of raking and hauling to do. 

As I drank coffee by the window and watched the road crew work, I remembered previous, more severe, ice storms when our own trees were brought down and I spent days  afterward cutting them up with my chainsaw and hauling the debris to the landfill with my utility trailer.  I recognized a tipping point had occurred in my life. The next time the ice brings down our trees, I won’t be able to clean up the damage.  Someone else will have to do it for me.  I realized that I could no longer do what those men were doing, I was no longer the person who could help others.  I had become the person who needed help from others.   

All of us face these changes in our lives and have to deal with them as best we can.  I know I’m not unique in this.  I’m just saying that we live on the continuum of life, and at those times when we are forced to notice how far we’ve come, and how short the distance is we have to go, it can be jarring.

Thursday, December 5, 2013


I’m not a mental health professional, but during my long career consulting on the development of supportive housing, I’ve met many individuals who suffered from severe mental illness, including major depression.  So after my stroke when I began to hear about the possibility of depression, I had some understanding of what might be coming, and I have to say it worried me, because the individuals I had met that truly suffered from major depression were severely disabled, even the ones that were under psychiatric care and taking their medications.  Not only were they quiet and subdued, but the disease affected them physically.  They were stooped and tired, without energy or initiative.  When I was close to them, I could feel the weight of the depression dragging them down, like a heavy, wet, moldy blanket was draped over them, against which they had to constantly struggle to keep from collapsing.

The staff at the inpatient rehab facility seemed to be alert to any sign of its appearance.  In my second week there, before I had made any progress in my ability to walk, or even stand by myself, my physical therapist asked about my children, who were 17 and 21 at that time.  She had met Polly, who had taken an extended leave from teaching, and who spent most of every day with me, observing and sometimes participating in my therapy.  I told her Hannah and Collin had visited me several times at night after she had left, but I did not want them to come during the day and see me taking therapy.  She didn’t understand, so I explained that I didn’t want to alarm them by having them see their father in such a weak, helpless condition.  It made perfect sense to me, and Polly agreed with me, but the day after this conversation, the social worker visited me with questions and concerns about my mental state.  I assured him I wasn’t depressed, but I don’t think he was convinced, but he never mentioned it again.  My children never saw me take physical therapy, but the issue was made moot, since I began to make rapid progress and was soon walking with a cane.

It wasn’t until I came home after four weeks at the inpatient facility that I looked into the medications I was taking and found that one of them as an “anti-anxiety” drug.  I stopped taking it and felt no difference in my attitude or outlook.  Not to say, though, that I had no experience with depression.  During a four-week period in my eighteenth post-stroke month, it paid me a visit.  Luckily, it didn’t come at me full force, I felt it only as a brush of a corner of that oppressive blanket, but it was enough to convince me that it was nothing to take lightly, and if its hold on me had started to strengthen, I would have sought professional help. 

The way I think of depression is in my personal, layman, terms of internal and external.  Internal is major or clinical depression, a serious illness caused by chemical imbalances in the brain that can be alleviated, if not cured, by the correct dosage of the correct combination of psychiatric drugs.  Not by drugs, though, like Valium, that only temporarily mask the symptoms. External depression is situational, brought on by circumstances occurring in our lives.  Internal depression colors our perception of external reality with hues of darkness.  External depression colors our internal thoughts and emotions with the same palette. 

As someone who tries, to the extent that I can, to see the world as it is, without self-delusion, either positive, or negative, I believe there is nothing inherently wrong with external depression.  Sometimes we see our situation in the world exactly as it is, and what we see provides ample reason to be depressed.   The good news, though, is that external depression yields to the introduction of depression-fighting external stimuli:  a sunny day, the smell of baking bread, a loved one’s kiss.   Internal depression, however, can’t be touched by what is external.  It’s hidden inside our brain, seething and festering, insulated from the outside.  The danger it presents results from its ability to prevent us from seeing the world as it is.  It corrupts and distorts our vision of reality, creating delusion to the extent that ending our lives can be perceived to be a better alternative than living with hopelessness.

The depression I experienced was somewhere on the continuum between internal and external.  It yielded to exercise, to nuzzling from Lily, my dog, to my wife coming home at the end of the day, to my children calling to talk.  But for several weeks it came back at night, in the early morning darkness, to try to convince me that the remainder of my life would be short and bleak, and that happiness for me was over and would not be returning. 

I’m not the Pollyanna type, and I know that for some people at some times, not living really is preferable to the pain of living, and I respect that, and support their decision.  I also know that if we are in the grip of depression, we may not be seeing our life as it truly is, but how the depression makes us see it, and before we do something that can’t be taken back, we need to make sure that we are seeing with vision as clear as it can possibly be.  The stakes are too high for anything else.