Grief

I never grieved after my stroke.  The reason being that for the first few months I was convinced that my life would soon return to normal.  People close to me that thought otherwise:  my wife, my physical therapist, didn’t voice their doubts during that period.  At least not to me.  Later, when I realized how stacked against me the odds were of resuming where I had left off before the stroke, I had begun to make such rapid mental and physical recovery that a complete return to normalcy seemed not only possible, but likely.  That was before spasticity reared its ugly, cursed head, and because of it, I may yet grieve over the life I once had, and the life I had planned to have after my wife and I retired and our kids were grown.

If I do grieve, I plan on following the Elisabeth Kubler-Ross model of denial, anger, bargaining, depression, acceptance.  It seems to be fashionable these days to criticize this theory of grieving, sometimes in the harshest terms.  I’ve even seen it called a lie.  I have no respect for most of its critics.  Here is a truth of my own, arrived at through 63 years of living:  the hardest thing in life is to create something; the easiest thing in life is to criticize what someone else has created.  Those who call her insight into the grieving process a lie don’t have proper respect for the damage lies do to our society,  and they show their ignorance of the way ideas are created, improved, and advanced and how the world can be made better by them.

The Kubler-Ross model passes the common-sense test for me.  It is basically how I have responded to tragedies in my life.  It’s true, I suppose, that the stages may not always come in the same order, and some people may skip one stage or add another, but it feels to me like it provides an insight into how human beings deal with loss that might otherwise be impossible to be dealt with.  And no amount of criticism around the edges can diminish a theory that reveals such a basic truth.

Entrepreneurship Part Two

My wife, also, wants to start a business after she retires.  Her passion is cooking - more specifically baking - even more specifically baking cream pies.  Chocolate, butterscotch, coconut, banana, lemon, lime, peanut butter, if it can be made into a cream pie she makes a delicious version of it.  We live in a small town, though, and the local market for baked goods is limited, even for those as good as hers.  So, the logical step is to expand the market by using the internet to sell region-wide, even nation-wide.  Polly has a friend who has gone this route, developing a successful fudge business with customers in several states.  Our problem is, though, that fudge ships fairly easily, cream pies, not so much.  An equally significant  problem is that to sell cooked food you must have a health department-approved kitchen, which basically means a commercial kitchen, and we don't have one.

So, our plan is to start small, first by creating a product that ships easier and cheaper than cream pies, then by finding a commercial kitchen to rent.  Once we establish a market, we can then expand into the business we envision.

There comes a time in every small business that in order to grow beyond a start-up, capital must be raised by taking on debt such as a small business loan or second mortgage, or bringing in equity investors.  Assuming of course, that most stroke survivors don't have personal savings to inject into the business.  If you do, you have my admiration; you are a better manager of your personal finances than I am. We are far from that point in my wife's business, and in mine, but it doesn't hurt to discuss possibilities, and besides, it's just plain fun to envision what could happen if you plan well, work hard, and stay smart.   I love the idea of starting my own business, and I think more stroke survivors should consider doing it. 

Stress

I know conventional wisdom tells us to avoid it as much as possible, especially after having a stroke.  We’re told that it causes all kinds of health problems, and that it can interfere with recovery.  But really, how much of it can you realistically avoid?  Even if you don’t work after having a stroke, you still have to live in the world, with all that that implies about acquiring housing, food, and transportation, while living in poverty, or near-poverty, which is about as stressful as it’s possible to get.

I’m lucky in that I’m able to work, but that presents a whole different set of stressors.  My position at the state housing agency is different from anyone else’s.  It’s my job to create new housing programs for people with special needs, and also to advocate for their inclusion in all of our mainstream programs.  So, while everyone else spends their time ensuring that our housing projects have low vacancy rates, generate high levels of cash flow,  and are well-maintained, I promote projects that typically have the opposite of these.  This is because people with physical or mental disabilities usually have very low incomes, frequent hospitalizations, and have difficulty maintaining their units. This inherent conflict constantly puts me in opposition to agency management.  It’s a tough, but very rewarding job, and the stress is constantly at a high level, but I wouldn’t want to be doing anything else.

In the  27 months since my stroke, I’ve consistently sought out stressful situations.  Working, driving, especially going long distances by myself, often at night, was nerve-wracking at first.   Deciding to start swimming again, which meant getting changed, walking on the wet pool deck, and showering on the slippery shower room floor, was terrifying, and I almost backed out several times.  But each time I tried something new and stressful, I was glad that I forced my self to go through with it, and each time I discovered that the second time doing it was easier than the first, and easier still each time afterward.

I have a feeling that we need stress in our lives to some degree. It’s the physical stress of exercise that makes us stronger, makes our muscles grow.  So, too, I believe, the mental stress of new experiences, new challenges, helps us get stronger mentally, helps our brains grow in some sense of the word.  Of course, too much stress, either physical or mental, can be harmful.  But with either type, if you start out small and build up to higher levels, the result will be a stronger body, and a stronger brain.

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.