Thursday, May 23, 2013

Brain Injury

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

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

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

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

Saturday, May 18, 2013

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

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

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

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

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

Tuesday, May 14, 2013

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

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

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

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

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

Thursday, May 9, 2013

Belief Systems

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

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

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

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

Sunday, May 5, 2013

A Person with a Disability

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

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

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

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

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

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

Wednesday, May 1, 2013

Close Calls

My spasticity has started to cause falling problems, something I haven't had to deal with since the first weeks after my stroke.  I haven't fallen yet, but I've had a few close calls, all of them related to work.  The first was about a month ago.  I'm a member of Kentucky's Supported Living Council, which meets quarterly in Frankfort.  The meetings start at 10:00 am, so I'm almost always on time, but it is a two-hour drive, and 10:00 Frankfort time is 9:00 Central, which is my time.  So, since I stopped halfway to use the bathroom and get fresh coffee, there were several council members already there when I arrived. 

It's a long walk from the visitor's parking lot of the enormous state government building to the room where the council meets.  It was a cool and drizzly morning, and the long walk did nothing to loosen up the spasticity.  I entered the room, which is a remote meeting site for state government, so is crammed with tables, chairs, computers, cameras, TV screens, council members and visitors.  Not a comfortable environment for a stroke survivor. 

The members that were there were gathered on one side of the three tables that had been arranged in an L shape, so I went to the other side where no one was sitting.  I put my shoulder bag down on the table,  carefully positioned myself in front of my chair, and slowly sat down.  The chairs that the council members use are small, lightweight, and have wheels so they can be moved easily on the commercial carpet on the foor of the room.  I calculate I've sat down in these chairs more than a hundred times in the twelve years I've been a council member, but not very many times since having a stroke.

I didn't realize it until it was almost too late, but I wasn't positioned precisely between the arms of the chair, and my left butt cheek, which has no feeling, was against the left armrest and had pushed the chair backward.  When I was halfway in a sitting position I reached behind me for the right armrest with my right hand, as I had been taught to do in rehab, to steady myself.  But there was nothing there to grasp.  I tried to stand up, but my spastic left leg wouldn't cooperate and stayed extended, throwing me off balance and pushing me backward.  I made a desperate grab for the armrest with my right hand, managed to grab it, and jerked the chair under me as I sat down heavily. 

After I recovered my composure, I looked around the room and saw a few startled looks, but no one commented.  It could have been bad.  I was going down hard, with no control.  After it was over, I thought about any accommodations they could make for me, but none came to mind.  The chairs are small and easily moved, but heavier, more immobile chairs would present a different set of problems.  So I've resolved to be even more careful than I have been since the stroke, because it looks like the spasticity is here to stay.  As I've done with so many other issues, I'll need to compensate instead of recover.

Cursed Spasticity

Spasticity on my left side continues to get worse.  I was hoping warmer weather would bring some relief, but that's not happening.  It eases off when I go to bed, and when I wake up in the morning I can barely feel it.  As soon as I throw the cover off, though, it begins, and by the time I come out of the bathroom it's back in full force.  By the end of the day I'm exhausted from fighting it and can't wait to collapse into bed.  And the cycle begins again. 

Peter Levine has written that spasticity is the result of the body trying to protect the affected arm and leg when they are no longer controlled by the damaged part of the brain.  I think that's pretty close to his opinion on it, anyway.  But that doesn't apply to me.  I have good control over my left side.  My gross and fine motor skills on that side are almost identical to those on the right.  I don't have surface sensation on my left side, though, so maybe my nervous system interprets that as a condition that necessitates that muscles stay contracted. 

Whatever is bringing it on, it's beginning to interfere with daily activities, including my job.  My work involves spending a lot of time on my computer keyboard, and I compensate for the stiffness in my left arm and hand by only using my left index finger to type.  But lately I'm having to take more breaks so I can flex and stretch my fingers and wrist out in order to relieve the pain that sets in after just a few minutes. 

The spastic muscles in my leg are less troublesome at work, but they do limit what I can get done around the house, and believe me, there is a lot that needs to get done around our house.  As in so many other aspects of my stroke, though, I'm lucky in that I'm right handed, and lucky that gas and brake pedals are on the right, so my ability to drive is intact. 

I still force myself to stretch and exercise and walk, but it's becoming harder every day.  I've talked to my doctor about Botox, and may give it a try if things don't get better.  I tell myself I can't give in to the spasticity and give up and just sit, although that seems very inviting.  Sometimes you just get tired of the struggle.  I tell myself, though, that everyone has their own unique struggle and this is mine, and it's not nearly as bad as some others, so I keep going.