New/Old Blog

Here is the link to my new/old blog that I started in 2011 just in time to have a stroke.  Stop by and visit sometime. http://theliberalcapitalist.blogspot.com/

Final Thoughts

We have a really good family doctor.  He's smart and informed and not too condescending by doctor standards.  Because he has such a good reputation, he's popular, meaning he sees a lot of patients, but in rural areas, that's to be expected.  He knows a lot about stroke, but even as good as he is, he's clueless about spasticity. He refers to it as stiffness, as in, "How's that muscle stiffness on your left side? Getting any worse?"

Me: "It's not really muscle stiffness, it's spasticity."
Doctor, ignoring my clarification:  "Still exercising?"

Me:  "Yep, I swim every other day, and the days I don't, I stretch and work out with light weights."
Doctor:  "Good, good.  Does that help with the stiffness?"

Me: "Not really.  In fact, in the short term it makes it worse."
Doctor: "Hmmm.  That's...odd," forgetting that I've explained this phenomenon to him several times before.

Me: "Yes it is."
Doctor: "You saw Dr. ______, the neurologist I referred you to, didn't you?"

Me: "Yes, I did."
Doctor: "Did he have any suggestions to help with the stiffness?"

Me:  "Not really."
Doctor: "Well, that's unfortunate.  Well, if it gets too bad, let me know and I can prescribe a muscle relaxant that might help some," forgetting that we've talked about this before and I've told him I'm not interested in taking a muscle relaxant.

The neurologist he referred me to last year also seemed like a nice guy, but was just as clueless about spasticity.  To check my condition, he watched me walk around his office, then had me sit on the examination table while he tugged on my left arm and leg. Now I have spasticity all up and down my left side, but it's not uniform, and it hardly affects my bicep at all, so it doesn't cause my left arm to fold itself against my chest as with so many other survivors. In fact, what I experience is just the opposite. So when he grasped my left wrist and pulled it toward him, I had to pull back in order to keep from punching him in the solar plexus. "Yes, yes," he said, "I can feel it in your arm." Similarly with my leg, I had to try to keep it bent so that my foot didn't snap up and knock his teeth out. "Yes, you certainly have a lot of spasticity in your left arm and leg," was his conclusion.

I didn't explain to him that he hadn't actually felt my spasticity where it actually was and how it actually affected me, because, really, why bother.  There's no treatment for it, anyway.  He did offer to write me a prescription for Baclofen and another for pain medication, but not wanting to spend the rest of my days stoned, I declined.

Mainly based on Dean's blog, I'm aware that there is a substantial amount of stroke research going on.  But it seems so haphazard, so unfocused and directionless.  It seems much of it covers ground already covered, making no attempt to build on work already done.  There seems to be no plan, and no entity that is providing any overarching perspective so that a coherent  strategy can be developed to solve the myriad unknowns that stand in the way of stroke recovery.  Instead, we have isolated researchers engaging in disconnected research projects, while the stroke organizations take the easy way out and focus on prevention and treatment processes so they can claim nonexistent successes.  I'm sure this approach makes for more fun conventions than would reporting on progress toward solving the complex barriers to stroke recovery. 

I sincerely believe that a group of stroke survivors could provide doctors and researchers some of the basic information about stroke that could help inform their research efforts.  But this is never going to happen. Doctors and researchers actually listening to advice from people who have had strokes?  Why the thought of such a thing is inconceivable.  What might happen after that?  Medical professionals paid for results instead of as an entitlement for having a medical degree?  Chaos, I tell you, the upending of the natural order.

So the state of stroke recovery seems hopeless, with the only useful information being provided by Dr. Google and the many smart and informed stroke bloggers.  I admire you all, but my time as one of you has come to an end.  My blog was about someone who had a stroke who was working.  But at some point in the last four years I became someone who was working who had a stroke - a subtle but significant difference.  There are still contributions I want to make and goals I want to reach in the time I have left.  One of my goals is to get back to the blog I had started prior to my stroke.  It's called The Liberal Capitalist, so drop by there and say hello sometime.  Be well, do good work, etc., etc.

Fear of the Dark

I don't fear too many things, but I do have one big one that I suspect most stroke survivors share:  spending the last years of my life in a nursing home.  Members of the stroke tribe have had a taste of what that's like in ICU and inpatient rehab.  I have vivid, and very unpleasant, memories of wearing a diaper; of being told when to wake up, when to eat, and when to take therapy.  I remember the professionalism of most of the inpatient rehab day staff and the very nonprofessional attitude of some of the night shift workers. I remember once being parked in front of the television in the day room and forgotten until I became sick and had to ask a visitor to take me back to my room.  I remember calling for a night nurse to take me to the bathroom, then waiting so long that I wet myself before they came for me.

Like most people, though, my stroke was not my first experience with a nursing facility. I had been in nursing homes several times to visit elderly relatives, and in every one of them, there were unfortunate individuals who spent their days in beds or wheelchairs, loudly calling out over and over and over.  Their messages varied to some degree, but they were always an appeal for help of one type or another.  In one place there was a man, who for some reason known only to himself, desperately needed one more plastic cup.  In another, a woman who needed help with the children that only she could see.  And several who just needed someone to get them out of the place where they were and back to their homes.  The staff of the nursing homes had heard the constant pleas from these individuals for so long that they had  become oblivious to them.  Some filtering mechanism had kicked in that enabled them to suppress the distractions and to calmly go on carrying out their duties. I thought of these individuals as people who, in a sense, had been buried alive. 

I pitied these poor souls whose needs seemed so desperate, but were destined to never be fulfilled.  Then, when I had a stroke, I became one of them.  My hemorrhagic stroke occurred in the afternoon, and that night I was in the stroke ICU of a university hospital.  At some point late that night I was awakened by a cacophony of noise: wheezing, squeaking, banging, clanging. All around me was dark, so that I couldn't see what was causing the noise, but it was overwhelming in its grating volume.  Even though I couldn't see anything, I knew that my wife, Polly, would be there with me. So I called out for her to stop the noise, and got angry when she didn't respond. I remember thinking how could anyone be so rude as to make all that racket when I was so tired and sleepy. I called out to Polly in the dark over and over asking that she stop the noise so I could sleep, but she never responded.  Later I learned that she actually had, but even her voice couldn't penetrate the darkness.

By the next day the darkness had lifted, and in the days that followed, I realized that the noise I had heard consisted of the sounds of the ICU as interpreted by my injured brain.  The muted sounds of carts and beds being pushed in the halls and the gentle whoosh of the pressure cuff wrapped around my feet became the hellish noise of a crazed lunatic band. I also realized that my room wasn't dark at night, only dimmed so the staff could go about their work.  I wondered if I had really called out to Polly, or if that, too, had taken place only in my fevered dreams.   I was surprised when Polly told me that she had heard me call out to her to stop the noise, but not being able to hear anything herself, and after my pleas to her turned into demands, she left the room and found a quiet place where she could cry in peace over the day's events.  The staff had ignored me.

It's this darkness that I'm afraid of.  Not the darkness of night, but the darkness of a mind that's shutting down and has trapped a still living person inside.  A person that can only call out for help in the darkness. My darkness lifted that time, but what about when the time comes when it doesn't.  What about when I'm the one buried alive and there is no one that can save me.  That's the darkness I fear, and because I've had a stroke, chances are that's the way I'll end up.  How can you live with that knowledge?  You just do.

Damn escalators

I hate those evil mechanisms. I didn't care for them much before my stroke; now I hate them with a passion previously reserved for such things as heavy metal music and Dennis Miller. 

It didn't take me long to get a client for my company Living At Home LLC.  My first client is a state agency.  Not the one I worked for, but another one that I worked with on a peripheral basis. Luckily, I've always been pretty good at networking, and that is a valuable skill when starting a business.  The agency that is now my client has operated a program for years that uses state funds to assist individuals with disabilities with making accessibility modifications to their homes.  Common projects are ramps, bathroom and kitchen renovations, and room additions.  Overall program oversight is provided by a council of advocates and professionals, and I served on that council for many years.  So, when I announced my retirement and asked agency staff if they would be interested in having me work with them on a contract basis, they were receptive. 

My contract started July 1 and I am providing design assistance, help with funding application review, and project monitoring.  The budget has been cut over the years, so I will be splitting my time between two separate programs.  They are both very worthwhile, serving households that really need the help.  I'm going to be busy, but I'm looking forward to it.

Which brings me to the escalator.  Tuesday I had a meeting in Frankfort with agency staff to discuss my activities for the coming fiscal year.  It was a very pleasant meeting, with everyone excited to have me on board to provide some of the technical assistance they have been lacking.  One of the staff members walked out with me, which entailed going from the third floor to the first.  He is a nice young man, healthy and able-bodied, so he led the way to the escalator. Now, it didn't take me long after my stroke to learn that escalators are problematic.  I go up them okay, but going down is a different matter.  My down technique is to balance on my good right leg and let my affected left foot hover over the steps as they come out at the top and make their descent.  I then summon my courage and drop my foot on a step and hope that it lands in the middle and not on a leading or trailing edge so I have a relatively stable foundation I can use to bring my other foot down. To compound the problem on this day, the escalators in the state government building where we met are narrow and steep. The building is going on 30 years old, and I don't think they would meet code today.

I almost told the young man that I preferred to take the elevator, but he was talking enthusiastically about my activities in the coming year, so I let my vanity get the better of me and with my arms full of documents and a raincoat, I followed him down the escalator.  Because I was trying to carry on a conversation with him instead of focusing on what I was doing, I didn't follow my down procedure, and instead unthinkingly stepped on to the escalator with my right foot, which left my affected left foot still on the landing.  I couldn't lift it fast enough to catch up with the other one, so my legs kept spreading, my right foot going down, my left foot staying in place.  The only thing that saved me from toppling head first into my companion was that the narrowness of the escalator enabled me to place both hands on the moving rails on each side.  Even though my hands were full, I could still balance myself until I could drag my left foot off the landing and down the stairs until it reunited with my right one. When we got to the second floor, he said, "Maybe we should take the elevator to the first." I agreed.

So, disaster averted, and I'm looking forward to both being retired and seeing how large I can grow my business.   Just goes to show that you are never too old for a new chapter of life, and new, exciting possibilities can be discovered even after a stroke.





 

Retirement

I retired the first of April.  Up until then I had imagined I would keep working as long as I felt I was making a contribution.  I was never one to distinguish much between work and not-work.  Since I enjoyed my profession, thought of it as part of who I was, and it was something I viewed as making the world a slightly better place, why stop doing it?  Of course we all know what they say about our plans.

The agency I worked for had been changing steadily over the past few years, and not for the good.  It was not the same place as sixteen years ago when I started.  Over that period there was a steady storm of cuts at the Federal and state level to programs that funded what I did: assist developers with designing and developing housing for people with disabilities.  This was the most difficult to house population, and the most expensive.  So when state and Federal budgets were cut, programs that targeted this population suffered the most.

The budget cuts precipitated a phenomenon I think of as the agency death spiral, kind of like the neuronal cascade of death.  In response to cuts in program funding, management did not become creative in finding new products to serve new customers, but rather cut programs back to fit the new, reduced funding levels.  Once this started to happen, staff that didn't agree with this strategy started to leave and staff that only cared about a paycheck stayed, and the agency became even more risk averse and committed to serving safer, more affluent populations, prompting more good staff to leave, and on and on until my personal tipping point was reached and one day I realized there was no one left who remembered why I was hired, or cared enough about special needs populations to fight for them. So I announced my retirement.  They wanted to have a reception for me, but I declined.  I didn't trust myself to not make some comments to some people that I would regret later. 

This work is part of me, though, so I will continue to do it.  I have created a company, Living At Home LLC, to provide design and construction management services for residential accessibility, energy conservation, and hazard remediation.  Essential elements for allowing individuals as they age or experience illness or accidents, to continue living at home (get it?).  My website is at Sparks Architecture.  I have a particular interest in the design of accessibility solutions for older homes in urban settings, which means my clients, in contrast to my career up to this point, will be well-to-do.  I hope there will be funds available to make housing accessible, affordable, and safe, for low-income Americans, but the way things are going I'm not optimistic.

I would be remiss if I didn't go a bit further, knowing I'm going to offend some, but I've never approved of people who criticize government actions without differentiating one party from another.  The cuts in programs that fund housing for the poorest, most needy Americans that have occurred continuously over the past 15 years have been perpetrated by Republicans, and would have been worse if not for the objections and opposition by Democrats.  And what makes it even worse in a state like Kentucky is that a majority of poor and disabled adults vote for Republicans, and the more they vote for them, the more the programs they rely on are cut.  In my nightmare imaginings I see the last poor, disabled person left alive in the state, staggering out of the last homeless shelter, carried into an inaccessible voting location, and voting for a Republican who has promised to close that last shelter.  So, I have retired.  I admit defeat.  I no longer have the energy to rage against the dying of the light.

Good Pain Bad Pain

This morning when I got out of bed and walked to the bathroom, I experienced a feeling that most stroke survivors don't get the chance to feel: sore muscles.  I'm not talking about painful muscles - I'm talking about the good kind of soreness that comes from overworking your muscles doing an activity you enjoy. Yesterday was my every-other-day trip to the Y for swimming.  I go after work, so got there around 6:30 and after a short warm-up, I decided to exert myself a bit more than normal.  I'm not actually able to swim laps, that is up and down and up and down without stopping.  Instead, I start in the shallow end and swim to the wall at the deep end and back to the wall at the shallow end, rest for a few seconds, then swim up and back again.  I do this ten times.  Not much of a workout by swimmer standards, but it tires me out.  Yesterday I felt strong, so decided to stroke faster and rest for a shorter period.  I followed through on that plan, and woke up this morning with sore muscles in my shoulders, back, and hips.  It was a great feeling.

There were regular Y swimmers in the lanes on both sides of me.  On one side there was a hefty guy who beats through the water with a measured polar bear chug, and on the other side a woman with a long, graceful stroke that indicates she may have swum competitively at one time.  My stroke, on the other hand, is strictly homemade. I do okay with my right arm and leg, but to stroke with my left, affected side, I roll over on my right and sort of throw my left arm forward.  As I've come to believe is normal with stroke survivors, no type of coordinated movement can be made unconsciously as we did in the past, so I have to remember to occasionally kick with my left leg.  Otherwise it trails along behind me.  With a lot of practice, though, I manage to go forward, albeit slowly. I've thought about asking Polly to video me swimming, and posting it here, but I really don't want to see how I look.

I'll be eternally grateful that my stroke left me with the ability to do so much - swimming in particular. Because of the spasticity on my left side, I can't run, or even walk very far or very fast, and while I do have a stationary bike, it only works out my legs. Only swimming lets me feel like I felt before my stroke: sore and tired in a good way.

Stroke Support Group

A year after my stroke I decided to start a stroke support group in our town.  Being an introverted person with a demanding job, I really didn't want to do it, but as a stroke survivor who had escaped more or less physically and mentally intact and had learned a great deal about stroke after the fact, I felt an obligation to help in any way I could those who were trying to navigate the great dark unknown of stroke recovery. 

Our town has a hospital that serves as a regional medical center for surrounding counties, but I had participated in a stroke support group in the inpatient facility where I had rehabbed, and had found it boring and uninformative, so I decided to form one that was independent of any institution.  Fortunately, the leaders of our church were enthusiastic about the idea and offered the use of a community meeting room with tables, chairs, and a kitchenette.  They even made sure the group's location and meeting time were publicized in the community news sections of the local newspaper and radio stations.

So at six p.m. on a Tuesday, Polly and I opened up the meeting room, set out brownies, made coffee, and waited.  One person showed up.  Her sister had recently survived a stroke, but had suffered significant physical and cognitive impairment that included aggressive, combative behavior.  Her husband had put her in a local nursing home, but her disruptive behavior had led to her being kicked out, and now she was in a smaller nursing home in another county that offered no therapy programs. 

Polly and I listened to her and sympathized, but neither of us had any useful advice to give, so after an hour she left with the leftover brownies.  We kept the support group going for another six months, but no one else came.  I was disappointed, since dozens of people in our town had strokes during that period, including several in our congregation, and I believed that Polly and I had useful information to offer survivors and caregivers. 

Later on, though, I thought more about it and decided that it was for the best that the support group hadn't succeeded.  The reason I had started it was to offer advice about stroke recovery beyond the platitudes and clichés offered by stroke professionals.  But could I have been so honest?  Could I have punctured the optimism of recent stroke survivors and their loved ones by telling the truth as I've come to know it? 

Could I have told a woman whose sister was in the same situation as the woman who came to the support group that her sister's situation was bad and would only get worse?  Could I have told her that unless someone in the family was wealthy enough to pay for her sister's care that the only option for her was a facility that accepted Medicaid and would accept anyone, no matter their condition, and in such a facility she had no chance of ever improving and the best they could hope for was that she wasn't abused before she died a quick and peaceful death.  No, I couldn't have said that, but it was what I believed. 

Could I have told survivors that if they couldn't use their arm, they almost surely never would; that if they couldn't walk, with a lot of work and the use of AFOs, canes and walkers they might sort of be able to, but not the way they envisioned walking.  Could I have told them that they likely would never work again, or probably never drive again. 

Could I have told caregivers that if their loved ones had significant cognitive impairment, it would probably always be that way.  If they couldn't eat a regular diet, they probably never would be able to, that if they were impatient and abusive, they probably always would be.

Could I have said all that?  No.  Maybe if I ever try a support group again, I'll name it a Stroke Reality Group and issue a disclaimer saying that attending could lead to disappointment and depression and hope that I get lucky again and no one comes.

Recovery

Lily and I setting off for a walk recently.

The biggest reason that I am able to do so many things after my stroke is that it wasn't that severe.  Oh, it was bad for the first few weeks what with not being able to walk or even stand up and all.  But I got better rapidly and within a year had regained almost full control and strength on my left side.  I do believe there were some things I did that aided in my recovery, with the two primary being swimming regularly at our local Y, and walking in the woods. 

There is a small patch of woods next to our house where our dog Lily and I loved to walk before my stroke.  After I returned home from inpatient rehab, it was several months before I attempted it again.  When I did I was shocked at how difficult it was to negotiate the path Lily and I had made over the years.  Leaves, dead branches, and even a few small trees had fallen across the path, and while pre-stroke I would barely have noticed, post-stroke they were formidable obstacles.  Just the unevenness of the ground made walking much more difficult than I had anticipated.  But I persevered, and now it isn't nearly as much of a challenge.

Lily is a golden retriever and a great dog.  The best I've ever known. We've had her since she was a pup, and she's twelve now, but still healthy and strong.  Like all golden retrievers, she is strongly attuned to her human family members.  Before my stroke, our walks consisted of me walking the path while Lily ranged through the woods around me, exploring, scaring up animals, and getting into as much mischief as possible.  After my stroke, though, she changed her routine.  Seeing how unstable I was, she stayed close to me and sometimes whimpered with worry when I stumbled.  Now she doesn't get too far ahead of me before turning around to check on me and wait for me to catch up, just like she's doing in the picture.  Polly and I are going to miss her so much when she's gone.

Here's a part of the woods off the path.  I don't try to walk there. Over the years we've seen rabbits, squirrels, deer, hawks, owls, snakes, turtles, skunks, turkeys, foxes, and a few unidentifiable creatures that could have been Mrs. Tiggywinkle. But probably not.  These woods, and Lily, have made my life a bit richer, though, without a doubt.

Neuros

I went to a neurologist last week.  Prior to this, the last time I had been to one was was two and a half years ago when I went back to see the neurologist who had treated me at the University of Louisville where I was taken after my stroke.  It wasn’t my idea either time.  Both times it was the suggestion of my primary care physician, whom I hold in high regard.  It was at six months post-stroke that spasticity had set in and was progressing rapidly.  My PCP was at a loss to explain it and made the referral to the neurologist.  I wasn’t optimistic that he would be of any help, since by this time I had done my own research enough to realize that there was no effective treatment for it. 

The trip back to Uof L hospital brought back many memories for Polly and me – mainly for her, since it’s all pretty foggy to me.  She remembered the 100 mile ride there with her family while I went by helicopter; she remembered being directed to the stroke ICU and being greeted by the hospital chaplain and the stab of fear when she thought I had died; she remembered crying in the bathroom, but having to put a brave face on for me and our children.  She remembered the kindness of the nurses and the cold unhelpfulness of the neurologist.  That hadn’t changed when I went back to see him.  Regarding the cause of my spasticity, being that I had regained almost full control and strength in my left side, he hadn’t a clue.  He actually shrugged in bewiderment, with his open palms in the air.  He did mention baclofen and botox, while admitting that neither was effective.  It was at this time that I realized that neurologists don’t seem to be interested in anything outside the brain.  It’s as if the effects of a brain injury on the body are beneath their consideration.  Which, of course, makes no sense, because a brain injury affects all parts of the body to some degree.

So now, three years post-stroke, that neurologist has gone back to Pakistan, or maybe India, and my spasticity has strengthened and spread all over my left side and up into my neck, affecting my voice and ability to chew.  It’s even creeping over to the right side of my face, so that I can’t feel my lips, and must put my hand to my mouth when I eat to ensure that food isn’t dribbling out. 

So, my PCP, at a loss to explain or help, suggested I go to a local neurologist he thinks highly of.   I was reluctant at first, believing it to be a waste of time, but finally decided it couldn’t hurt, and who knew, maybe this guy by some miracle knew of something out there I hadn’t come across in my reading.  But miracles don’t really happen in real life and the new neurologist, while experienced and nice enough, had nothing new to offer.  I told him that I still work and have to drive considerable distances as part of my job, so I can’t take baclofen, which causes drowsiness, and as far as botox injections, where would I even start?  Neck? Shoulder? Arm? Fingers? Leg? Toes?  He offered to give me a perscription for anti-anxiety and pain medication, which I guess represents a strategy of if I stay stoned all the time I won’t care so much about being unable to move.  I declined the offer.

So, I continue to fight the spasticity, although it is exhausting, and I think about neurologists and how frustrating it must be to be one and have no effective treatment to offer those who come to you for help.  Or maybe they don’t care.  Who knows what goes on in the minds of such a seemingly strange group of people.

Possibilities

I'm not one for inspirational quotes, never have been.  Being of a naturally sarcastic and cynical nature, I tend to find them trite and cloying.  But I came across one about a year ago that managed to pierce through the tough shell I've built up around me over lo these many years.  The quote wasn't intended to be inspirational, but it was, which made gave it a much greater impact.  It was included in an article about a teenage girl who was born without eyes or a nose.  Much of her young life had consisted of corrective surgeries intended to give her a face that she would never see. When the author commented to her that her life hadn't been easy, she replied:  "That's right, but I don't need easy, all I need is possible."

At first I didn't know why it affected me so much, beyond even the demonstration of such courage and toughness in one so young.  Then I realized that what she had expressed so eloquently in such a few words was the way I had always tried to live my life, even though I had never faced any hardship that came close to what she had endured.

I had always been prone to looking ahead to what I might become, what I might achieve.  When I was young, like most kids the possibilities before me had seemed infinite, too numerous to choose among.  And again like most kids, I chose a wrong one before I became wise enough to start again and select the right one. 

For awhile, the possibilities before me remained stable and finite as I worked, raised a family, planned for retirement.  But this was only illusion, for I now realize they were changing, shifting, contracting, expanding, disappearing, appearing, as I grew older, became a father, changed jobs, then had a stroke.

After my stroke, it took awhile for me to ascertain the possibilities that remained in front of me.  When I did, not looking at them either positively or negatively, but objectively, I saw a smaller, but more sharply defined, number of possible futures.  Some of them were bleak, but some more exciting than anything I had ever imagined. But with age hopefully comes wisdom, and I know that these possibilities will continue to change, shift, transform, appear and disappear even at this stage, as I grow older and the end of my life comes nearer. 

I now view recovery from a stroke differently than I used to.  I don't see it as trying to get back physically and mentally to the way I was before.  Now I realize that after any significant illness or accident, each of us, if we live, is left with a level of potential recovery that may be 1%, or 100%, or anything in between.  Unfortunately, none of us knows exactly what this level is, we can only work hard and see how far we can progress, without knowing if we are close to our goal, or have miles to go before we can rest.  But the more we progress in our recovery, the more the possibilities open up in front of us, and that's all we need.  We don't need easy, we just need possible.

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.

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.