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.