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. 

Sensation

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.

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.

Sensitivity

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.

Disability

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.

Depression

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.

Thanksgiving

My wife, Polly, is an outstanding southern cook and she really shines during the holidays.  Tomorrow we're going to travel to see a relative with a new baby, but Thanksgivings when we stay home, her menu looks like this.

Tossed salad of spinach, sliced almonds, craisins, with buttermilk dressing
Kentucky ham made with brown sugar and pineapple (no one in our family likes turkey)
Cornbread dressing
Corn pudding
Cheese pudding (casserole)
Cranberry with cream cheese
Broccoli casserole
Sweet potato casserole
Dressed (deviled) eggs
Rolls
Pumpkin cheesecake
Coconut pie
Pecan pie
Red wine
White wine
Coffee

Polly is taking several of these dishes to the relatives' house, and she will make most of them for Christmas dinner.  I love the holidays.

A setback

I've been experiencing health issues the past two weeks, but I'm gradually recovering.  It all started on a Friday with a flu vaccination.  I wasn't feeling well that day, like maybe I was coming down with a cold.  I knew I shouldn't get a flu shot under those conditions, there was even a question on the questionnaire that asked if I were sick.  I lied and said no, because I wanted to get it over with and didn't want to come back the next week.  The next day, Saturday, I had flu-like symptoms, like a cold on steroids, so I lay around all day.  The next day, Sunday, is when the real trouble started.  I woke up with shooting pains in my back and down the back of my right leg, so I lay around all that day too.  In my life I've had a couple of episodes of sciatica, inflammation of the sciatic nerve, but nothing that severe.

All the next week the pain in my right side (my good side) was agonizing, and even spread down to my ankle and up into my neck.  In the morning I would take a couple of acetaminophen and hobble into my home office and collapse into my chair.  Once there I would yell and writhe in pain until the pills took the edge off.  The pain never really went away, but as long as I sat, I could concentrate enough to get most of my work done. 

The weather here turned cold and rainy that week, and some combination of the weather, the flu symptoms, and the sciatica, caused the spasticity in my left side to amp up.  So that's the way I've been for almost two weeks:  right side burning with pain and left side stiff as a board.  The pain has gradually started to ease in the last few days, but there is still a definite limit to the distance I can walk before it comes roaring back.  Yesterday, I had to go to KHC to get some tasks accomplished that I can only do there.  It went pretty well, since I was able to sit in various places most of the time. On the way back though, I had to stop at a gas station, which was self-service of course.   After filling up, I decided to go inside to use the restroom and get some coffee.  When I came out, it was sleeting, and both my sciatica and spasticity were awake and angry.  I limped back to my car, hunched over to my right trying to get some relief from the pain, while my left leg was so stiff I couldn't bend my knee.  I must have looked like Quasimodo, plus I was talking to myself, saying "Ow, ow, ow," every time I took a step.  I'm surprised no one called the police.

I haven't been able to exercise in two weeks, and I'm not sure when I'll be able to again.  I imagine I'll have to start over from scratch.  I was up to 16 lengths in the pool, and I hate to think about how long it will take me to work up to that again.  This has been the biggest setback to my recovery since the spasticity started 18 months ago, but I overcame that, and I 'll get through this.  Just another episode of living with stroke, the gift that keeps on taking.

My Attitude

I've never been a glass half-full kind of guy.  But I try not to be a glass half-empty type either.  I'm definitely not into positive thinking, and I try my best not to engage in negative thinking.  What I strive to do is to see the world, and my place in it, exactly as it is, no more no less.  I'm not claiming that I always succeed, or even mostly succeed.  Seeing the world as it is isn't easy.  In fact I've found it to be damn hard, since what you may be seeing may not be pleasant.  But to me, viewing the world through a lens of positivity is just as wrong as negativity.  Positive thinking is just as much a form of self-delusion as negative thinking.

My first encounter with the power of positive thinking was way back in college.  I didn't agree with it then, and still don't.  The guy who expounded on it in class supported his belief in it by describing an incident that had been in the local news of parents who had gambled on an untested and expensive cure for their child that had succeeded in saving the child's life.  To him, the lesson was that if the parents hadn't engaged in positive thinking, the child might have died.  I disagreed. 

From the beginning of time, and well before positive thinking, people have been defying the odds as they see them and taking actions that they believe have no chance of success.  It's called hope, an ancient concept.  To me hope is a much more valid approach to living.  It implies an objective evaluation of reality and perhaps a decision to pursue a course of action that is probably doomed to failure, or perhaps not.  Perhaps the parents of that child didn't engage in positive thinking.  Perhaps they did what parents have done from the first time there were parents:  acknowledge the futility of their actions, but go on anyway, and hope for the best.

This is my approach to recovery from my stroke.  Realistically, I don't think I will achieve complete recovery.  In fact, I'm pretty sure I won't.  I don't know with absolute certainty that I won't, though.  In fact, I hope I will.   

More Reminiscing

Continuing with the two-year anniversary reminiscing theme, I asked Polly what was going through her mind during those first weeks after my stroke when she thought I would not walk again.  As seems typical after stroke, no one told us much of anything, I guess because no one knew anything.  When I was in stroke ICU, she could see that I wasn't even capable of sitting up, but she wasn't that upset, because she thought that when I got to the inpatient rehab facility, they would get me up and running laps around the hallways.  But after a week there and I still needed two staff to help me transfer from the bed to a wheel chair, she drastically adjusted her expectations.  Especially after the staff discussed with her that I might be a better candidate for a nursing home than a rehab facility. 

Polly said that as she pushed me in my wheelchair around the hallways, and outside if the weather was nice, "I just kept repeating to myself that I can do this.  If this is what the future will be like for us, so be it , I can do this."  Polly believes in the power of prayer, so she said she prayed, "Please let me bring him home, in whatever condition he is in, just please let him come home so I can care for him."

Polly was prepared to be my caregiver, no matter how hard, no matter how long, no matter the cost to her.  But thankfully she didn't have to face that future.  I attribute my rapid recovery to characteristics of my stroke:  hemorrhagic, small in size, no vital areas of the brain affected, but she believes that God intervened to deliver me from living out my days lying in a bed.  I know what I believe, but I would never claim that I know the absolute truth.

Anniversary

October 21 was my 2-year stroke anniversary, and my wife, Polly, and I were reminiscing.  She said, “Remember during the first days of inpatient rehab when I would push you outside in the courtyard area?” I told her I sort of did, but those early days were pretty foggy to me.   But her mention of that time brought back memories of that place flooding back:  the sounds, the smells, the atmosphere of it, the sensation of being in a wheelchair, the strange feeling of being in that place.  I may not remember some of the details, but I’ll never forget that feeling.

Polly took time off from teaching, so she was there every day with me and stayed late into the night.  I remember taking physical therapy and seeing her nearby and hearing her encouraging me.  I didn’t realize at the time in what bad shape I was, but Polly did.  She told me later that she would go into the visitor’s bathroom and cry after watching me try to walk.  She never revealed to me how she felt, though.  She said that after watching my struggles in the first weeks at inpatient rehab, she would come home and prepare for my homecoming by going online and researching hospital beds and wheelchairs. 

 Neither of us knew then, but I learned later by reading Peter Levine’s blog, that a characteristic of the hemorrhagic stroke I had was severe physical disability at the beginning, but rapid recovery.  And that was exactly the course my recovery took.  One morning in about the fourth week, Polly walked into my room and I pointed to a quad cane standing in the corner.  She said, “You can use that?”  When I said I could, even though I barely could, her face beamed, for that was her first hope that I would be able to walk again.

 But now, after two years, I feel like I’ve reached a tipping point in my recovery to the point that I now consider myself a normal person with a slight physical impairment, rather than a disabled person trying to recover to normality.  Polly often reminds me of what used to be.  When I complain about my limp, she says, “At least you’re walking.”  When I complain about the stiffness on my left side, she says, “At least you’re able to dress yourself.”  It’s good to have the perspective of someone who’s been there and knows exactly how it was.

Swimming

I do a lot of things to keep myself physically fit.  I lift light weights; I do crunches, planks, and modified pushups; I walk; I ride a stationary bike.  But most of all I swim.  I’m lucky that my small community has a large, well-equipped YMCA with a nice pool with three lanes always reserved for lap swimming.  I try to swim at least three days a week, and I attribute much of my physical recovery to swimming.

 I’m not of a mystical bent, but I can’t help but think, and feel, that water is healing.  When I jump in, it feels to me that my body responds positively to it, that I have entered a nurturing, supportive environment.  The spasticity that slows me so much when I engage in other forms of exercise has less power over me in the water.  It still fights against me, but the water enables me to overcome it to the extent that I can go 12 lengths of the pool using my own version of a freestyle stroke.  I don’t claim to do laps, since I have to catch my breath at each end of the pool, but I think before long that laps will be doable.

There was a therapeutic pool at my inpatient rehab facility, but my therapists never suggested I use it. I attributed that to the fact that it would be more difficult, and time-consuming, for the therapists to  have to get in and out of the water with their patients.  It’s my personal belief, though, without any research to back it up, that exercising in water would greatly benefit all stroke survivors. 

In my opinion we don’t respect water nearly enough.  It’s where we came from, and mostly what we are.  When I swim I feel its resistance that strengthens me, and its support that assists me.  For sure, it can be dangerous, even deadly, but if you don’t fight it, and instead respect it, it will respect you. 

Near Lexington there is a rehab facility for injured thoroughbred horses where, by use of a crane, sling and harness apparatus, horses can swim in a circular pool.  Something like that would be greatly beneficial to stroke survivors, I believe, but race horses are valuable in our society, while stroke survivors seem much less so.   

What I Do

I’ve blogged a few times about where I work and what I do, and my last post was about attending the Kentucky Affordable Housing Conference.  The communications department at Kentucky Housing  Corporation  produced a video that was shown at the opening session.  It includes scenes from around central Kentucky, including Lexington and Louisville and some KHC employees acting silly at our company picnic.  Also included are highlights of two of our many programs, one that finances accessible and energy-efficient single family homes, and my program, the Olmstead Housing Initiative, which funds multifamily rental housing for people with severe mental illness.  Here is the link to the video, which was put on Youtube: http://www.youtube.com/watch?v=Xex4LPBwkEU

Small Vacation

Just got back from two days at the Kentucky Affordable Housing Conference in Lexington.  Polly is on fall break this week, so she went with me.  The conference was held at the Lexington Convention Center and we stayed at the Hyatt next door.   The last time we stayed there was 14 years ago and the kids were with us.  Hannah was nine, and Collin five.  Polly and Hannah and a friend of Polly’s and her daughter went to a concert at Rupp Arena while I entertained Collin.  The concert featured Nsync with Justin Timberlake before he was famous, with Pink the opening act before she was famous.  Our stay there this time was much more peaceful.  Our room was very nice, since the Hyatt has undergone a much-needed remodeling and updating in recent years. 

A traveling exhibit about the Titanic was in one part of the convention center, and on Thursday  Polly went to that and did some shopping while I attended the conference events.  The workshops I chose to attend focused on accessible and energy-efficient residential design, which is becoming ever more important as energy costs rise and the concentration of greenhouse gases in the atmosphere increases.  Late in the day, I was a participant in a Q&A with private and nonprofit housing developers concerning rental subsidy vouchers for people with mental and physical disabilities that KHC is going to apply for if HUD ever reopens for business.  We are excited about the housing opportunities these subsidies will provide people with disabilities.  It’s one of the very few affordable housing resources left, so I was glad that developers seem interested in utilizing them. 

Like most stroke survivors, I suffered some damage to my ability to process questions and formulate a quick response, so I was a bit apprehensive about taking questions from such a hard-nosed group.  But everything went well, and now going on two years after my stroke, my mind seems as agile as it was pre-stroke.  I even found myself on more than one occasion growing impatient with the lack of comprehension on the part of some individuals concerning concepts I considered fairly straightforward.  Just like pre-stroke.

After the Q&A, I had a glass of Maker’s Mark, a fine Kentucky bourbon, at the conference reception, then went to our room where Polly was waiting.  Since the weather was beautiful, we decided to walk to a nearby downtown restaurant for dinner, or supper as we call it here.  We had been there before, but not for many years.  Polly had a salmon dish, and I had smoked gouda and rigatoni with an alfredo sauce.  Both were excellent.  We both had wine:  me, Pinot Grigio; Polly, her usual white Zin.  I had grilled garlic bread with my dish, but we also got a small loaf of bread before the meal.  And no rye bread here.  This is Kentucky, so we got corn bread with sweetened butter.  Polly does love her dessert, so we both had coffee, and split a huge piece of excellent cheesecake.

 

We don’t eat this much as a rule, so we were both stuffed afterward.  I told Polly I might need to get a taxi back to the hotel.  She looked at me with alarm, and said, “Really?”  I told her I was just kidding, that I was fine, just so full I could hardly walk.  That comment was something I would normally say before my stroke, and Polly would have known it was a joke, but you’ve got to be careful about joking about mobility impairment to someone who’s seen you go through stroke rehab.  We walked back to the hotel and both felt better for it.  There were activities for conference attendees that night, but neither of us felt like participating, so we watched a little TV and went to sleep early. 

I got up the next morning, had a big continental breakfast while Polly slept in, then attended the morning workshop sessions, and was finished by noon. We toured the shops at the convention center for a bit, including the excellent Old Kentucky Candies shop, then drove back home.  On the way back, we drove past the beautiful Keeneland horse track, but racing had already started and we knew on a beautiful day like that it would be packed.  You have to get there early to get a seat, and neither of us wanted to stand.

It was a short getaway, but both of us enjoyed it.  Having lived in this state my entire life, I take for granted its beauty and many charms.  A trip like this one makes me realize how lucky I am to live here, how lucky I am to be alive, and how lucky I am to have someone to enjoy life with.  It’s not quite the same as it used to be, though.  The spasticity is a constant reminder of what happened, what could have been, and what yet could be.  But until that time comes, life is well worth living.

Healing and Adapting

I drove to Frankfort yesterday to our annual picnic and staff meeting.  It was the second one I'd attended since my stroke.  The first one, last summer, was a big deal for me.  It was the first time I had driven that far by myself, and the first time I had participated in a large event such as that.  But it's amazing how the human brain and body can heal and adapt to even something as traumatic as a stroke.  Since that first time, I've made the trip to Frankfort many times by myself, and this time carrying Polly's casserole from my car to the tables where the food was laid out was no big deal.  And just as I have adapted, so have my co-workers.  This time no one offered to let me go to the head of the line or help me get my food. I was just another staff member standing in line with everyone else.  It was too hot to play games after eating, so I went back to work for awhile then drove back home.  I drove through a thunderstorm on the interstate, but what else is new in Kentucky.

When Polly got home I still had enough energy to go with her to the Y and swim  laps.  That, also, is much easier than it used to be.  I no longer have to ease in using the steps at the shallow end.  Now I go to the deep end of the lane I'm going to use and jump in.  The water and the pool area is kept cool, so jumping in is a shock to my system, but it's good to get it over with instead of drawing it out.  I swim underwater a bit just to get used to the temperature, then swim laps for about forty minutes.  Then a long, hot shower and back home for supper. 

The spasticity on my left side still plagues me, but doesn't stop me.  I tell myself that it's part of the healing process and that eventually it will go away just as it came.  I don't know if that's true, but it's a nice thought, and who knows, maybe it will happen that way. 

Recovery from stroke is such a slow process that it's easy to get discouraged.  But on days like yesterday, it becomes obvious to me how far I've come in a relatively short time.  Today is a day of reflection, but also a day of work.  Life is such a balancing act. 

Thankful

I went back to Frankfort Wednesday and Thursday of last week.  Had meetings at KHC Wednesday, stayed overnight, then attended a meeting of the state Behavioral Health Planning and Advisory Council on Thursday.  The BHPAC is made up of representatives of state agencies, including me, along with individuals with severe mental illness, individuals in recovery from substance addiction, and parents of children with these issues.  From time to time members tell their stories, and the tragedies that most have endured leave me in awe at the resiliency of humankind.   The trials that so many have experienced themselves are bad enough, but even sadder are the stories of the loss of children to overdoses and suicide. 

The other statewide council I serve on, the Supported Living Council, administers funds that assist people with severe physical and mental disabilities, frequently to make accessibility renovations to their homes.  So the makeup of the membership reflects those populations, either affected individuals themselves or family members, along with staff of state agencies.  The chairman of the Supported Living Council is a guy I've known for many years.   He is a quadriplegic, having severed his spinal cord in a diving mishap when he was a teenager.  He drives a specially equipped van and uses a powered wheelchair.  Along with his service on the Supported Living Council, he serves on many other state councils, boards and committees relating to accessibility and fair housing.  He is also married, works full time, and enjoys attending University of Kentucky football and basketball games.  He has UK basketball season tickets which are extremely difficult to obtain, and has been nice enough in the past to let me purchase tickets to single games.

I look at him and all the others I've met through my work and volunteer activities and I feel thankful for the abilities my stroke left me with.  Thankful that my cognitive functioning was left intact.  Thankful that I can drive. Thankful that the work I do doesn't require  physical labor.  Thankful that my speech was unaffected.  Thankful that the agency I work for still values my contributions.    Thankful that my family is still whole.  Thankful that I am able to feel thankful.

Guilt

Reading posts by several stroke bloggers about feelings of anger after a stroke got me thinking.  And I realized I was never angry after my stroke.  I think there are several reasons for this.  First, in the hospital and during inpatient rehab, I was too busy, too overwhelmed by everything to feel much of anything.  It was all I could do, and more, to process how my life how changed, and absorb and adjust to my new reality.  Then, when I came home and had time to evaluate, assimilate and do some research, I realized how much better off I was than most stroke survivors, and I felt gratitude more than anger.  Another reason that relates to my personal belief system is:  Who would I be angry with?

I don't believe in a God who controls our lives and decides our fate, and who visits strokes on some while sparing others.  I suppose I could have been angry at fate, or maybe the universe, but that seems too nebulous to work up a good anger.  If I were going to be angry at anyone, it would have been with myself, for I believe I was primarily responsible for my stroke.

Since I don't believe in a God that operates the universe, I believe there is a great deal of randomness in whatever befalls us.  But down at our human level, I also believe that cause and effect also exists.  Before my hemorrhagic stroke, I was in pretty good shape for a man of sixty, but I did have high blood pressure.  I was stubborn, though, and determined not to take medicine, but to bring it down through diet and exercise.  That might have worked given enough time, but a blood vessel in my brain gave up and leaked before it came down to a safe level.

For sure, I did, and do, feel anger at myself for not taking the actions that could have prevented my stroke, but more than anger, I felt guilt at what I did.  Guilt for my selfishness in not taking care of myself and putting my family through such worry, upheaval, and trauma. I will feel guilty about what I did for the rest of my life, but I do not let it hold me back, or let it interfere with my recovery.  I am resolved to move on with my life to the best of my ability in spite of the guilt I feel.  To do anything else would be to hurt my family even more than I already have, and I am determined not to let that happen.   I acknowledge my guilt and everyday try to atone for it.  It's the very least I can do.

 

More Work

I went back to KHC Wednesday morning.  Had a meeting that lasted most of the afternoon, then got a motel room, ate and watched HBO.  I really wanted to watch the US Gold Cup soccer game, but the Frankfort cable ddn't carry it.  After watching my two children play soccer from the ages of five to eighteen, I've picked up a little knowledge of soccer (football to the rest of the world) and now I really enjoy watching it, especially if the men's or women's national team is playing.  I only know one other guy, a US citizen, but born in France, that enjoys watching soccer, and he doesn't pull for the US team, but that's okay.  I've found that people who enjoy soccer tend to have a more global outlook.  I had prepared for the game by buying a 12-pack of Miller long-necks and a large bag of Doritos.  Three bottles of Miller and the bag of Doritos made a fine supper, especially since I ate propped up in bed with a bunch of pillows all around me, and watched television.  Life doesn't get much better than that.  One of the many lucky breaks I got from my stroke was that my swallowing was unaffected.  I was on a bland hospital diet for the first week, but basically went back to eating anything after that.  When I got to inpatient rehab, they were very surprised.  During one of my first meals there, a nurse said, "You can have that?" looking at my plate of salisbury steak, green beans, roll, and iced tea.   "Yeah," I said, not understanding her surprise.  At that time, I was so uninformed about the effects of stroke, I had no idea how lucky I was. 

KHC has never questioned paying for a motel room for me when I stay overnight in Frankfort.  They don't have to do that, and, in fact, I'm one of the few people they do it for.  It's not a perfect place to work (what place is?) but they've always been good to me, especially after my stroke.  I hate to think how most private businesses would have reacted.  I imagine my working days would be over.  I repay them by working hard and not complaining about the hours I put in.

Thursday morning I got up early and had my shower.  I like to shower in the morning, it wakes me up, and one thing I especially enjoy doing is to shower standing up.  I used a shower chair in rehab, and when I first got home, but standing up is one of those things that make me feel normal, which is a good feeling.  What that means, though, is that in order to wash my feet, I have to balance on one foot while washing the other, then switch.  Now I know this is not a good idea, especially for a sixty-two year-old, especially a sixty-two year-old who's had a stroke and has spasticity in one leg, and even more especially, in a motel tub with no rubber mat in it.  But I did it anyway, and once more got away with it.   I attended another meeting early Thursday morning, then took care of administrative tasks, and drove home. 

Friday I worked in my home office and at five, Polly and I went to the Y, she to Zumba, me to the pool.  I had tried a little experiment during the day Friday, and hadn't stretched or exercised in any way, and sure enough, the spasticity had been fooled a bit and had relaxed, and I was able to swim better than I had in months.  The hardest thing is getting my left elbow up and out of the water, so my stroke is erratic and I list to one side, but I manage to get up and down the pool slowly, but steadily.  I showered after 30 minutes of swimming laps, and we came home.  Polly made nachos for us and we both managed to stay awake through a rerun of Blue Bloods, Polly's favorite program. She has a crush on Tom Selleck.

I know it sounds like a boring life, and in a few years when we both retire, we plan to do some traveling, but for right now, knowing the struggles that so many stroke survivors and caretakers endure, I appreciate that we can enjoy such a dull and sweet life together.  Realizing what might have been makes me appreciate what is.

Okay, again

Okay, one more post about spasticity.  I had every intention of not writing about it again, but it always seems to bring itself to my attention, so this will probably not be the last one either.  I guess I'm as obsessed with it as it is with me. 

It's been hot here the last few days, hot and humid.  Since my stroke I like hot weather a lot more than I used to - the humidity, though, I can do without, but I'm used to it so it doesn't bother me much.  In weather like this I like to go outside and stretch, so yesterday, knowing that I was going to swim later, I went outside in the sun and did some slow stretching, being careful not to bounce, just stretch and hold.   As I stretched, I could feel my left side becoming tighter.  That's right, the more I stretched, the more the spasticity fought back, until at the end of 30 minutes I could barely hobble back inside and collapse into my office chair. Polly and I left for the Y at 5:00, and I told her that I would be walking better and better able to swim if I hadn't stretched at all, just sat all day.  Now that just isn't right, it shouldn't be that way.  After swimming for 30 minutes and taking a long hot shower, the muscles on my left side felt like they were pulled so tight they were vibrating with tension, like guitar strings.

What infuriates me the most is that looking back over the course of my recovery, if I had to pick a high  point, it was at eight or nine months post-stroke.  At that point, cognitively I was almost back 100%, and my balance, coordination and strength were returning rapidly.  At that point I could see 100% recovery.  I was headed toward it, it was within sight.  Then the spasticity started.  I refused to give in to it and continued to get stronger and re-establish balance and control.  But the stronger I got, the stronger the spasticity got.  It feeds off me.  Like some kind of weird parasite, the stronger I get, the stronger it gets.  The only way to weaken it seems to be to become weaker myself.  It's as if it's mission is to not let me achieve full recovery.  I believe that if I gave up that goal and stopped trying, it would go dormant and leave me alone.  It's quite a dilemma.

I haven't been able to find any guidance abouit my situation, not in my research, not by talking to any health care professional.  If the physiatrist I worked with knew anything about anything, he didn't let on.  My neurologist didn't seem to know anything about the effects of stroke after the first week.  My old PT can only recommend more PT.  My PCP is a good generalist, but isn't a specialist in anything, certainly not stroke.  So I'm on my own here, so I guess I'll have to chart my own course.  Onward and hopefully upward. 

  

And Again

A post about spasticity again.  It is the bane of my life.  I would like to ignore it, but can't.  It makes itself known as soon as I get up in the morning and doesn't release me until I lie down at night.  I try to ignore it during the day, but it will have none of that.  That makes it mad.  It's obsessed with me, and determined to make me acknowledge its existence.

Tuesday was a sunny day here and I went outside and stretched, and exercised with my 10 pound weights. Then, in the evening Polly and I swam laps at the Y.  And how did the spasticity respond to all that?  Tuesday night I could barely move.  The spasticity was so bad on my left side, my right side was affected.  I could feel it on the right side of my neck and shoulder.   Regardless, though, I had to get up early Wednesday morning and drive to Frankfort.  I had a training on some new software Wednesday morning, a meeting with an architect who is preparing some rental housing designs for us in the afternoon, then a teleconference with a D.C consultant until 6.  I stayed overnight in Frankfort Wednesday night, then attended a meeting of the state Behavioral Health Planning and Advisory Council from 10 to 3 Thursday.  Then back to KHC to take care of a few items, then a two-hour drive back home.    Today is another work day with follow-up items from the meetings of Wednesday and Thursday.  Later today, Polly and I are going swimming again, then maybe a relaxing movie night if either of us can stay awake.

My co-workers at KHC seem to have forgotten that I had a stroke and they don't hesitate to schedule me for as many meetings and expect the same amount of work as pre-stroke.  They don't realize how fighting the spasticity tires me, because I won't let them see it.   But that has been my goal all along so I won't complain.  The way I see it, I have a decision to make about the spasticity.  I can give in to it and stop exercising and focus on relaxation and maybe some light and slow stretching, or fight it and continue to work out and swim and try my best to live the same life as I did before.  My decision is the latter.  I will fight it, knowing that it may win and some day I may become immobile and may have to quit work and adopt a whole new lifestyle.  But fighting is the only option for me.  We have to be true to our nature.

Routine

On those work days when I'm not on the road traveling to Frankfort or some other place in Kentucky, I work out of my home office.  On those days, around 5:00 pm I change into swim trunks, sandals and a t-shirt, wrap my goggles and a pair of short pants up in a beach towel, and my wife and I head to the YMCA.  Her Zumba class starts at 5:30, and while she does that, I swim.  I was on the road yesterday, but Tuesday I worked at home.

She likes to get to her class a little early to make sure she gets a good spot, so I went to the pool and watched the YMCA swim team finish up practice at 5:30.  Watching them brought back memories of when my daughter and son were young.  They both started swimming on the Y team when they were six, and continued through high school, also swimming on their high school team.   They were both talented and athletic, and were competitive on the state level, but neither of them had the competitive fire that you have to have to continue swimming after high school.  Swimming is an ultra-competitive sport, with even small colleges bringing in swimmers from all over the world.

At 5:30 practice ended, and I got in.  We have a very nice Y for a small town, and the pool is large.  They keep half the pool for free swim, and reserve three lanes for lap swimmers.  Sometines you have to share a lane, but Tuesday I had one to myself.  Because of the spasticity, I don't swim nearly as well as I used to.  But I manage to get a few laps in even if I do have to stop and rest occasionally.  I get out at 6:00 because I have to go slowly and cautiously getting out of the pool, negotiating the pool deck, and getting into the shower.  Tuesday, this journey was made harder because of a family that was camped out on the steps at the shallow end.  I imagine I could get out using one of the ladders at the deep end, but I feel safer using the steps with the handrail.  The young lifeguard on duty didn't tell them to move and I didn't ask them to, although I probably should have.  I managed to maneuver around them and get into the locker room without incident.  By the time I showered, got dressed, and got out to the lobby, it was 6:30 and Polly was waiting for me.  Sometimes we stop and get a salad, usually at Zaxby's, but Tuesday we had a great supper at home of ribs, fried apples, and garden squash and zuchinni.

As we ate, I complained that it took me so long to shower and dress that I could only swim for thirty minutes.  Polly said, "At least you can get in and out of the pool by yourself, and I don't have to be with you the whole time."  I had to agree with her about that.  In the first few months after my hemorrhagic stroke, I was in such bad shape that Polly envisioned her future as being my constant caregiver, so while I sometimes complain about my abilities compared to pre-stroke, Polly usually calls me on it and reminds me of what might have been.  She helps me keep things in perspective, and helps me realize that our routine, mundane though it may be, is something that many stroke survivors and their caregivers would be very grateful to have.

Spasticity Again

I think about, and write about, spasticity a lot because it's the primary deficit remaining from my stroke.  If not for it, I would honestly say that I am 100% recovered, both physically and mentally.  But because of it, I would say that my entire left side is only 50% as effective as it was pre-stroke.  So, 50% effectiveness over 50% of my body means that I am 25% physically impaired.  Then, taking into account that I am 100% mentally recovered, I think of myself as having 12.5% total impairment.  To give a little room for cold, rainy days when the spasticity gains strength, I'll call it 15% impairment.  So, according to my personal recovery equation, I'm at 85% recovery.  Which is pretty darn good compared to other stroke survivors who I read about.  I'll take it and not complain, and count myself lucky that I dodged so many stroke bullets that hit so many others. 

I read any article about spasticity that I come across, and from what I gather, my condition is different from most others.  In fact, I'm not sure it's spasticity at all, but I don't know what else to call it.  In my case, it isn't that flexor muscles over-power extensor muscles.  My spasticity is equal opportunity, attacking all muscles on my left side, flexors and extensors, big and small, weak and strong, from neck and shoulder to wrist and fingers to ankle and toes.  The result is that all the joints on my left side are in an equilibrium of difficult movement. 

I have the same range of motion on my left side as on my right, it just takes a lot more effort.  I can open my left hand as easily as I can clench it.  Actually, it would be more accurate to say I can open my left hand with the same degree of effort that is required to close it.  Same with extending my arm and bending it, extending my leg and bending it, raising my arm and lowering it, pointing my toes and clenching them, and so on.

My spasticity feels as though it's active, rather than passive.  Reactive describes it better.  It becomes stronger when I use the muscles in any way on my left side, as if the spasticity struggles to prevent movement and return my limbs to a state of immobile equilibrium.  Exercise does not loosen up the muscles, instead, it makes the spasticity stronger, as if it becomes angry that I dare to challenge its rule.  Its power has gradually gotten worse over time, and the more I fight it, the more it fights back.  I'm constantly tempted to give in to it and stay still and sit or lie down, but for now I keep up the struggle.  I encourage myself by thinking that since my brain seems to have regained complete control over my affected side, it's just a matter of time before the muscles realize it and stop waging this war of spastic self defense.   I'm afraid that's just a fantasy, though, and the fight will go on until I run out of energy to keep up the effort.

Brain Injury

Several months ago at a meeting of the state Supported Living Council, I found myself seated beside the head of a state agency that adminsters programs that provide service funding for people with brain injuries.   Now, because of my twenty years of experience with designing and developing supportive housing, I'm familiar with most programs that provide service funding.  Supportive housing involves linking affordable (usually rental) housing with appropriate supportive services for tenants, and even though I've always been involved in the housing component of supportive housing, you can't have that much experience in the field without acquiring a substantial amount of knowledge about supportive services and the programs that fund them.

But learning is a never-ending process, so when I found myself seated beside this agency head, I took the opportunity to clear up some confusion I've always had about programs that fund services for people with Traumatic Brain Injury (motorcycle accidents for example), and Acquired Brain Injury (stroke for example).

I've known her for many years and she was happy to explain which state programs funded services for which condition.  At the end of the meeting as we were packing up to leave, she said, "Are you going to apply?"
"What?" I said, not understanding what she was asking.
"Are you going to submit an application for funding?"
"For myself?" I said.
"Yes."
"No," I told her, in a laughing, dismissive way.

But I didn't feel like laughing about it.  I'm a member of that council because of my professional position with a state agency involved in developing housing for people with disabilities, and that's the way I think of myself. So, to be treated as someone eligible for service funding was jarring.  I know she was only trying to help, but to be confronted with such a discrepancy between the way I see myself and the way she saw me threw me off balance.  After thinking about what happened, I came to the conclusion that I'm the one who needs to perform some mental adjustment.  I worked as a professional before my stroke, and I work as a professional now, but now I'm a professional with a disability. No use to deny it.  There are many others like me all around the world, and as lifespans continue to get longer, there will be more.  It's one of the many adjustments we all must make as we go through life, and this one is taking some getting used to.

Thursday was my birthday.  I turned 62.  I don't enjoy birthdays anymore.  That started way back when I realized I had more of them behind me than in front of me.  I had to go to Frankfort that day to attend the quarterly meeting of the state Behavioral Health Planning and Advisory Council,  another statewide committee I've participated in for many years.  I got up at 5:00, drove two hours to Frankfort and once again had to park what seemed a mile away from the state office building where the meeting is held.  It wasn't really nearly that far, though, more like an eighth of a mile.  There was a chance of storms, so I took my raincoat into the meeting with me, which started at 10:00 and went to 2:00.  But at least they served us lunch, one of the few meetings left that has money to do that.

When it was over, rain was pouring down, but I had my waterproof Northface to offer some protection during the long slog back to my car, unlike several other council members who were gathered at the entrance watching the rain with glum faces.  I felt sorry for them because it looked they faced the decision of staying there for awhile or getting drenched.  I felt a touch of guilt as I pulled my hood up over my head and set out, but there was nothing I could do for them.

I drove to KHC where my co-workers surprised me with a cupcake birthday party, then I had another meeting to discuss the progress of one our projects, then I  took care of a few administrative items while I was there.  On the way home I stopped and picked up my favorite Thai food for my birthday supper.  When I got home, my wife and kids had presents and cards for me and had picked up my favorite cheesecake from a local restaurant. 

After all that I was tired, but not exhausted, and I was a little proud of myself for still being able to put in a long and tiring day like that.  I'm lucky in that I never suffered from the crushing fatigue that so many stroke survivors endure.  Why I was spared, I don't know, but there is no way I could continue to work and put in the hours I do and drive the distances I have to if there was any danger of falling asleep during the drive home.

But as you all know, stroke giveth and taketh away.  The next day, Friday, was a work-at-home-day, so I slept in a bit, but felt fine, and that afternoon I got out in the yard and threw the football around with my son.  My wife said I seemed to be moving better than I had in months.  But stroke is an evil spirit that hates any sign of hope, so this morning I woke up and stretched out my legs and felt the hamstring on my affected left leg clench.  And it hasn't unclenched.  So the spasticity that has claimed the muscles on the front of my leg from hip to toes has now moved to the back.  Now, only my calf muscle on that leg functions normally.  What happens when it locks up I don't know.  Today I walked and managed to do some yard work, but with difficulty.  What will happen if I get foot drop, which I haven't had to deal with, is something I fear to find out, but I'm afraid I will, and I'm afraid, soon.

The primary reason I am able to keep working after having a stroke is that my cognitive abilities were barely affected at all, and the small amount of damage that I did sustain got better in just a few months.  My speech wasn't affected, or my hearing, or my eyesight.  It seems that, like Garrison Keillor, the area that was damaged was equivalent to Wyoming:  nothing much of importance going on there.   Except that I was affected physically to some degree, so my area of damage corresponds more to Nebraska, maybe Kansas:  a few things were going on, but, evidently, nothing I can't live, or work, without.

I read of other survivors' struggles with impaired memory, with decreased hearing, with diminished eyesight, with aphasia, apraxia, dysarthia, paralysis, pain, and the myriad other conditions that a stroke can cause, and I am  reminded anew each time of how very lucky I am.  The spasticity that has gripped my left side and feels like iron bands around my shoulder, arm, ribs, and legs that are fitted with some kind of screw device that some evil spirit gleefully tightens every morning, is irritating and physically limiting, but doesn't compare with the suffering of so many others.  I'm lucky because I'm able to earn a living with what I know, and that primarily comes from having worked in my field for thirty years. But even with that, I wouldn't be able to continue my role as consultant to agencies and nonprofits if it weren't for the technology that allows me to telecommute and interact without having to travel from one end of the state to the other.

I'm not saying that cognitively I'm exactly the same person I was pre-stroke.  The primary difference, at least in my own view, is that I can no longer indulge people like I used to.  This pertains to both people that I work with and to friends and family.  Pre-stroke I would force myself to listen when others prattled on at length about kids, grandkids, movies, hobbies, pets, jobs, politics, sports, and a host of other personal interests and passions.  Because I would indulge them, I often found myself trapped at social gatherings, and at work, listening to seemingly endless monologues by people that others avoided like the plague. 

But I just can't do that anymore.  It's more than just a lack of patience, I no longer have the physical or mental stamina to indulge people when all they want from me is to listen while they talk about their favorite topics.  Oh, I'm not mean about it, I don't tell them to shut up and go away, but I do avoid them when I can, and if I do get trapped, I'm no longer shy about extricating myself from the situation.  I've instituted a 50% rule when it comes to conversations.  If I find myself in one and I'm not talking roughly 50% of the time, then I end it, because it's not really a conversation, it's someone who wants me to listen while they talk.

I think this change in me was primarily caused by the stroke, but it could be part of aging and a brush with mortality that has caused me to realize how little time is left and what remains is  a precious resource not to be wasted on those that would take it without giving value in return.

Belief Systems

I read a lot of stroke blogs by stroke survivors and I see this comment a lot:  "Why me? Why did this happen to me? And why did I survive when so many others don't?"  I understand the reason behind these questions.  The urge to fit our individual lives with all the capriciousness with which we must deal, into a larger cosmic plan is powerful.   I don't have any problem with that way of thinking.  If anyone believes their individual survival, or lack thereof, is important to the universe, more power to them.  As for me, though, I don't see it.     

I think I survived an intracerebral hemorrhage, which has a fairly high mortality rate, because of sheer luck.  The bleeding stopped before the size of the hemorrhage became large, and the area that was damaged evidently didn't control anything vital to staying alive.  I don't believe any divine intervention was involved in creating a lucky outcome for me.  My wife disagrees, though.  She prayed for me constantly, and she believes in prayer.

That is not to say, though, that surviving a brush with extinguishment had no effect on me.  On the contrary, it has affected me deeply.  But the way I look at it is not that my life was spared for a reason, but that I was spared, now I have to create a reason for my life.  Luckily, I have a job that is more than just a source of income, though I'm not knocking that by any means.  Creating quality, affordable, accessible housing for people with physical and mental disabilities fills a need in me to contribute something to the world in exchange for the space I occupy.   It's not that I am what I do, it's that I feel that what I do is worth doing.  And that's a really good feeling.  Jobs though, come and go, especially for 62-year-olds that have had a stroke, and this one will eventually come to an end.  How will I create a meaningful life then?  I have a few ideas.  They many never become reality, but as long as I have life, I'll keep trying.

Re-reading this post I realized that it sounds as if I'm dismissing my roles of father and husband.  That's not the way I feel, though.  Those are the most important things I've ever done.  But my children are grown now, and my wife has her own career and is making plans for her own transition to retirement.  I want to be there for them when they need me for as long as I can.  If I can also engage in some meaningful work during that time, all the better.

A Person with a Disability

Each year Kentucky Housing Corporation has a mandatory all-staff meeting.  It's usually in the summer, and accompanied by a picnic and games like softball, volleyball, and even a golf scramble.  It's a time when upper management gives updates on budget issues and new initiatives, so it's kind of a big deal.  The first one after my stroke in October 2011, was June, 2012.  I debated with myself whether I should go, since I had never driven that far alone since my stroke.  My wife, Polly, was out of school for summer vacation and she offered to go with me, but this was something I wanted to do by myself.  I was anxious to show my co-workers, and management, that I was capable of attending and participating without any help. 

So early one warm June morning I set off, accompanied by a casserole Polly had made for me.  It's a two-hour drive from where we live to Frankfort, where KHC is located.  Pre-stroke, I had made this drive so many times I could practically nap there and back.  But this was different.  I hadn't driven this far very many times by myself since the stroke, and it was a stressful trip.  Driving at that time still required a great deal of concentration; it was no longer a mostly unconscious activity as it had been pre-stroke. 

But I made it to Frankfort with no problems, then drove to the public park where the staff meeting/picnic was held.  I started second guessing myself when I pulled into the big gravel parking lot.  In the distance I saw that the big pavilion was already mostly full of KHC employees - there are more than two hundred.  I almost pulled out and drove back, but took a deep breath and got out.  I got the casserole Polly had made for me out of the back seat and started on my way.  I walked through the loose gravel parking lot, crossed a raised sidewalk, and walked through an uneven grassy area next to the pavilion where most of the KHC staff were already seated, while holding the large casserole in front of me with both hands.  Some people in my department called out my name as I walked by, but I ignored them, because I was busy repeating to myself,  "Don't fall, don't fall, don't fall." I was terrified of the mental image that kept forcing its way into my mind of me sprawled out on my stomach, arms stretched out in front of me, the contents of the casserole scattered on the grass, with my coworkers running to help me up.  God, anything but that.  I almost stopped to rest and collect myself, but instead forced myself to keep going until I arrived at the table at the front of the pavilion that held the side items.  Thankfully, there was someone there to take the dish from me, but it took a great deal of effort to open my clenched left hand, and let go.  Next, I had to negotiate the milling crowd while dealing with many well-wishers and searching for a place to sit.  I finally found an empty spot at one of the picnic tables with people I worked with, and managed to climb in without kicking anyone or falling onto the table.  I sat there, exhausted as people on both sides tried to talk to me.  I'm sure they thought I was being unfriendly, but there wasn't anything I could do about that.  I was in survival mode, and conversation was optional.

After about 30 minutes, during which I managed to sort of carry on conversations with several people at my table, it was time to eat, which meant line up and fill up your plate buffet style.  I sat and waited as the other people at my table got up and got in line.  With that many people it was going to take at least thirty minutes, and there was no way I could stand up that long. As I sat and waited, the Director of Human Resources, a very nice young woman whom I had known for many years,  came up to me and said, "Come on Jim, you can go in front and I'll help you get your food." I politely declined her offer, but she was insistent.  "Yes, come on, we've decided that this is the way we'll do it."  Which showed me that management had discussed me beforehand.  I politely, but firmly declined all her offers of assistance.  I was not going to let anyone help me get my food while the other staff members looked on.  She finally relented, and I waited until everyone else had gotten their food and returned to their seats, then I got up and filled my plate, which wasn't easy, since the plates were flimsy Styrofoam things that had to be held at the bottom or they would collapse.  Everyone else was busy eating, though, so no one noticed my struggles. 

I stayed through the management presentations about budget and programmatic issues, then while everyone divided up to play their favorite sport, I sneaked out and drove home.  When I arrived, I was tired, but proud of myself for having pulled it off with no major embarrassments.  I told Polly, though, that this was the first time since my stroke that I had been treated like someone with a disability, and it had been a new and a troubling experience.

If I had asked KHC management to excuse me from the mandatory event because of the difficulties it presented for me, I have no doubt they would have complied.  But my focus since my stroke has been on downplaying the negative effects of it, and trying to show management and co-workers that I can function in the same living and working environment as the other staff.  Perhaps that wasn't the best strategy and I should have requested some reasonable accommodations from the beginning.  But I didn't, so now, for better or worse, I feel like I'm stuck with trying to be like everyone else when that's not quite the reality of the situation.