Tuesday, March 27, 2012

Driving 3: Independence is Being the Decider

Let me live in my 
house by the side of the road

Where the race of men go by-

They are good, they are bad, they are weak, they are strong,

Wise, foolish- so am I.

Then why should I sit in the scorner’s seat

Or hurl the cynic’s ban?-

Let me live in my house by the side of the road
And be a friend to man. (Women, children and dogs included)
—Sam Walter Foss (1858-1911)

During the year before my sequential visits to Asheville Eye Associates, I was stopped three times by polite, concerned, police officers. Each time they used the word erratic to describe my driving. Fortunately I never actually had an accident and although I clearly had some near misses, they usually involved a curb, an island, a construction barrel, or sliding off the road then jerking the wheel to avoid going over a bank. (Lots of curves where I live.) Since I have a lifetime habit of analyzing, I did a lot of that; it did not take long for me to understand that those near misses tended to occur when I was tired, often on my way home. Since the act of driving made me tired, it was impossible to avoid that vague feeling in my head, the pulling feeling in my eyes, and the stiff feeling in my knee.

The question about whether I should be driving was one I occasionally considered for a year or two before the problem with my retinas increased to the point that I rarely relaxed into that appealing flow of the car, the road and me. The first of my three eye examinations was with the retina specialist, whom I see every six months. He is young and energetic and treated my question like it was a no-brainer. “Anyone who is not comfortable behind the wheel should not be driving,” he said.

Eight years ago just after Bill died, I told my son Robin and his wife Tammy that I hoped to live out my life in my own home (by the side of the road, being a friend to others). I invited them, even urged them, to speak to me directly at any time if they were worried about my safety, my cognition, my driving, my hearing, or any diminishments that gave them pause.  I went on to say that I didn’t want to be one of those mothers whose children had to take away the car keys or decide to put her in a nursing home. Although neither of those circumstances seemed even remotely possible to me at the time, I was sincere in my desire to be open in the future to considering any necessary lifestyle change. However, I wanted to make my own decisions as long as I had the wits (or the wit) to do so. I’m sure that all of you who read this will be saying, “Amen!”

 A friend who was working with elderly people once said to me, “Old folks are so good at dealing with loss.” He went on to say that as you age you live with loss all the time—not just death, but in your capacities large and small, your independence and often your resources. I see this all the time in the lives of people I know who are heroic in their ability to go on finding happiness and gratitude for life in the face of immutable circumstances.

When my mother was housebound at the end of her life and dependent on my sister’s help and the attention of home health workers, I asked her if she still had moments of joy. She smiled and said, “Oh yes, but it comes from smaller and smaller things like a perfectly poached egg or a boiling hot cup of coffee.”

My own losses of my life partner, many friends and relatives, physical agility, lung capacity, and now the curtailment of driving have all involved varying levels of grieving and many adjustments, but those things are mitigated by the light of the love that surrounds me and the joy of waking up in my own bed in the morning, putting the leash on Nigel and going out for an early morning walk.

What does it mean to be independent? There may be a few exceptional people, who are truly independent, but in the No man is an island sense, everyone is dependent on others to some degree. I sometimes think modern packaging is designed to thwart old folks in their effort to be independent. If I buy carrot juice, for example, I can’t drink it until Tammy comes by to open the bottle. I have concluded that independence for me starts not with doing absolutely everything for myself, but with the freedom and the ability to make all my own decisions. Being independent also involves the capacity to pay my own way, do my share, and either give something back or pay it forward.

Kind policemen gave me warnings, a friend courageous enough to speak a hard truth told me she had been nervous with my driving because I was weaving and had crossed the yellow line. I chose to raise the question with the eye doctor who spoke more truth, but also referred me to two other specialists to cover all the bases. No one ordered me to stop driving; the state did not revoke my license; and nobody took away my keys. Best of all, no one, including myself, was ever injured by my driving. My hope now is to be able to continue local driving for many years and in addition to accept with grace and gratitude the offers of friends and family to do errands for me or give me rides. I also hope to make my own decision to give up even the local driving later on, if necessary.

My truth, which I share with you, is that the kindest thing we can do for our children or other loved ones is make our own well-informed and timely decisions about any needed changes in our lives for as long as we are able to do that. I doubt that any son or daughter really wants to take the keys away from Mom.

Tuesday, March 20, 2012

Driving Part Two: Embracing Loss and Hoping to Dance

Once or twice a month I listen to Krista Tippett’s NPR show On Being,  and often something captures my imagination. Last Sunday the guest was Kevin King, a writer who was born with a disabled left arm and at age 40 lost the use of his right arm in a motorcycle accident. He read aloud one of his stories with this central theme: Suffering a loss—whether it is a person, a promise, a limb or an ability—changes your story forever.. Doubtless you will grieve, and then you’ll start a new story, different because of the loss. Soon you begin to embrace that loss and then your story becomes a dance.

Accepting the reality of a probable future loss (driving) began for my frugal husband Bill and me in 1994. Bill had discovered that we could save 10% on our AARP car insurance by completing a two-day course called 55 Alive. To keep the deduction, we repeated the course in 1997. The class began with a series of short videos, graphs and demonstrations designed to shock us old folks into a realization that we really did have problems we needed to be aware of and to manage. The distractions of cell phones, texting, and earphones were not really part of the equation 15 years ago as the teacher told jokes and anecdotes before showing gory pictures of accidents that happened to seniors making left turns. He led us through an examination of the direct and cumulative physical effects of advancing years on driving: vision problems, (including depth perception), hearing losses, stiff necks and mobility issues. Osteoporosis can shorten the torso and also increases vulnerability to injury in accidents. Three behavioral problems contribute to the statistical evidence of the danger of DWO (Driving When Old). These are poor judgment in making left-hand turns; drifting within the traffic lane; and decreased ability to change behavior in response to an unexpected or rapidly changing situation. Slowed reaction time, which happens to us all, doesn’t create much of a problem at 20 miles an hour, but it is critical on a highway when the same person is going 70 miles an hour.  Seniors beware!

The vision problem I described in my blog post last week was not mentioned in the driving class. In the beginning I experienced it as an inconvenient condition, which affected my ability to drive with ease and confidence. But in the light of my memories of 55 Alive, it also made me question how safe I was, and whether I was a hazard to others on the road. I haven’t actually lost the ability to drive; I handle the car competently and feel comfortable driving anywhere in the South Toe valley where I live and to nearby Burnsville if I choose the day of the week and the time of day carefully.

What I have given up driving to Asheville, a distance of about 50 miles, half of which is currently under construction. I do not drive on any of the trips we take.  Without hesitation I drove on Tybee Island where the average speed limit is 20, but avoided the one main road where there was apt to be more traffic.  My Celo friend Joyce, who also spent January and February on Tybee, took me off-island to shop for groceries at Publix, and I only went to Savannah when I had company who drove me.

The loss I have had to embrace is a loss of freedom to go and do whatever I choose whenever it’s convenient for me. I have lost that sense of doing something for a lark like loading up my dog Nigel in the early morning, driving into Asheville, doing a few errands, and then taking a long walk in new territory. I have forever lost that wonderful feeling of setting off on a road trip with confidence, rhythm and a connection to the road.

Yesterday my daughter-in-law Tammy drove me to a medical appointment in Asheville. We each had a few errands and our trip was both fun and efficient. She suggested a new restaurant and as I devoured mahi mahi in a coconut-ginger sauce, we talked about a paradox. I feel an increased dependence on Tammy and several friends who give me rides, but I don’t feel any less independent in my life. I make my own choices and handle my day-to-day chores. When I told her I missed the times that I went somewhere just for fun, she said, “Yes, but that really wasn’t a very good use of the fuel and you have a concern about that as well.” True!

Instead of chattering on about my losses of visual acuity and independence, I want to share my feelings about the embrace and the dance that will follow. For the past five years I’ve desired a different life than the one I was living. My reduced energy left me with few hours in a day when I could be active and busy, and I went on filling them up and living at roughly the same pace I always had. What I wanted was to slow down, and spend much more time pursuing just a few interests, which are all home-based. But the siren-song of so many other possible ways to spend time kept calling and I kept answering.  As driving brought tension and apprehension into my life and increased my tiredness, the thought of giving up most of my time at the wheel of my Honda Hybrid became more attractive. But at the same time I recoiled at what I thought would be a loss of independence. It is also true that I am deeply concerned about energy consumption, and the wanton wasting of the earth’s resources. I began to look for opportunities to carpool and to say yes when others, who had to go to town, would say, “Can I pick up anything for you?” I was already embracing what was to become my way of life when I hit the red line in Dr. Wiggin’s office.
(See previous post)

In the months since that moment last November, I have fully embraced this milestone. My life story has changed, and learning the dance that ensued allowed me to move closer to the pace and style of living that I craved. I am keenly aware that having family next door makes it easier for me than it might be for others. Creative thinking, however, is available to everyone and there is life after driving.

Tuesday, March 13, 2012

Driving: Shifting the Responsibility

I was frankly tired of the struggle to deal with the intermittent double vision. My unreliable depth perception left me guessing just where my car was in relation to other objects such as concrete gas pump islands, metal guardrails along a curve in the road or oncoming traffic. I was tired of my near misses, which were all too frequent, and the tension I felt in an unexpected rain shower. Once I had been pulled over by an off-duty policeman who had asked solicitously if I was all right. He then told me I hadn’t broken any laws, but I was driving erratically and had come very close to sideswiping another car. The specter of causing an accident with possible injuries to others was overwhelming. As I sat and waited for the doctor, I put the palms of my hands over my eyes for comfort.

The physical therapist had completed a thorough examination and testing of the neuro-muscular functioning of my eyes. She picked up some papers from the desk, turned off a bright overhead light and hurried across the waiting area to the door. She paused, turned to me and said that the doctor would be with me shortly. Then she left me to wait in the company of my daughter-in-law Tammy.

Since many of the doctor’s neuro-muscular patients are children, the spacious room was decorated in primary colors. A mixture of large and small chairs was lined up in an area probably used both for parents to watch and for consultations. Picture books were stacked next to news magazines on the table and a box on the floor was filled with a variety of toys. I glanced at Tammy who had taken a seat opposite the black leather exam chair where I was waiting. Her face was impassive as she held a magazine in one hand and flipped the pages with the other. It appeared she was looking at the pictures and reading the captions, but I guessed she was just passing the time.

My throat was dry so I unwrapped a cough drop and popped it in my mouth welcoming the familiar taste of honey and menthol. I closed my eyes and wondered what this day would mean to both of us. If I had to give up driving, I suspected that my life would get easier and hers would get a little harder. This was the third eye specialist  I had seen in a three-week period, and therefore Tammy’s third trip to the Asheville Eye Associates as my driver.

The door opened, and Dr. Wiggins greeted Tammy and then shook her hand as she introduced herself  adding, “I’m the driver.” I had read his impressive background, and when I shook his hand I commented that he must have been studying forever to have completed so many degrees and fellowships. He laughed and said he really liked being a student. Of medium height with a pleasant smile and a direct gaze, he was casually dressed and appeared very much at ease. He asked me several questions and examined my eyes briefly. Referencing the report of the physical therapist, he began to give me his conclusions. First of all, he said that the lengthy testing had answered the question about the double vision. My eyes were working together normally and there was no neuro-muscular problem. Clearly, the issue with my vision lies with the retinal scarring, as he termed it. He concurred with the findings of the other two specialists that surgery was too risky and they would not operate on my eyes just so I could go on driving.

The doctor couldn’t know the great relief I was feeling. Nor could Tammy who immediately asked several questions aimed at other possible solutions like eye exercises or different glasses. After giving her brief answers, Dr. Wiggins turned to me, and the doctor became the teacher. He proceeded with an excellent explanation of the problem reminding me that our eyes just collect raw data and we actually see with our brain once it decodes the information it has received.  My brain can’t decode the information my eyes are sending when the shadows from the wrinkles on my retina distort the raw data. Tammy spoke up and said that I hadn’t had any trouble driving around Celo, and he nodded as though that was to be expected.  He moved a few steps away from my chair so he could look at us both and concluded by saying emphatically that I should not drive in traffic, in road construction and never in the rain. I thanked him; we all shook hands, and he suddenly became the doctor again with a slight straightening of the spine and a swift exit.

Tammy stood up and held out her hand to help me down from the chair and asked if I would like to go somewhere for tea and relax a bit. I thanked her and suggested a particular restaurant. She looked concerned and a little sad, so I told her right away that I was relieved that it was settled, and my only concern was that she might sometimes feel resentful if she had to drive me a lot. “That’s what families do,” she said, as we left the building, and she took hold of my arm as we walked to the car.
The visit to Dr. Wiggins occurred last November, and my immediate concern was how I would manage my life during the two months I was planning to spend on Tybee Island. I mentioned this to my son Robin when I told him I wanted to curtail my driving so that I would not be on the road in the rain or facing heavy traffic or active road construction zones. He immediately responded, “We’ll just have to think creatively about Tybee.” 

My reaction to the cogent explanation of my weird vision problem was indeed one of relief, both because I understood it better and I also knew it was an obvious red line. In the months since then, my emotions have been considerably more complex. Life in the rural mountains of North Carolina is very car-dependent and creative thinking has been the watch-word both on Tybee and at home.

I think that giving up or even curtailing driving is one of the hardest decisions older folks have to make, and we’ve all heard stories about unhappy moments when children or guardians take away the car keys. Therefore, I plan to continue with this subject for the next two weeks.

Monday, March 5, 2012

Corner Brighteners: Three Tributes

Brighten the corner where you are!
Brighten the corner where you are!
Someone far from harbor you may guide across the bar;
Brighten the corner where you are!
When I was a little girl, we sang that chorus in Sunday School nearly every week. It was a jolly tune and we belted it out with gusto. My hometown was only 60 miles from the ocean; harbors and sand bars were in our ken, because going to the shore was part of our summers. Since I’ve been writing a weekly post for this blog, I’m more aware of how I’ve been influenced by the words my parents and teachers spoke to me, poems I was required to memorize, songs that I sang enthusiastically, and books that I read over and over. These are the things that shaped my beliefs, set the points on my moral compass, and gave me a solid road map for my life. One of those messages was that it is good to be a corner brightener.

I want to pay tribute to three such people, whose glow has enriched my life. All of them continued to light a path after they began to recede into the fog of dementia. The first of these is my father, who took a job as principal of an entirely black elementary school, a job nobody else wanted in 1928 just before the beginning of the crash. My father desperately needed work to support his family, but he remained in the job for forty years. He changed the lives of thousands of children as he fought first for equality of education and later for full integration. He was a gentle, mild-mannered man who loved to laugh and was quick with word play, doggerel, and music, singing regularly in church, community and professional choirs. He was an air raid warden, active in local politics, and in the Glenside Methodist Church, grew a Victory Garden and read voluminously. He brightened a very small corner of Abington Township in Pennsylvania as he devoted his life to innovative ways to help the children in his care fulfill their potential.

Eight years before he died he began to show signs of what was then called senility and was just as mild and inoffensive in that process of mental decline as he had been in all the years before. He continued to tell funny stories (albeit the same ones over and over); to love ice cream, coffee and apple pie; to sing hymns and read books even though he couldn’t remember what they were about. He spent the last ten months of his life in a nursing home where many of the African-American staff had been students in his school and remembered him. They cared for him with love and respect. At the end of his life he did not talk, but his eyes lit up when loved ones entered the room or if someone brought him ice cream.

My amazing sister-in-law Anne has lived with an Alzheimer’s diagnosis for five years. She is not passively accepting the fading of the light. Instead, she has put considerable effort into retaining her sense of self, pulling together the fractured parts of her brain and interpreting her experience to her husband, family and friends. Life has put her in a darkened corner where she quickly turned on a light. She has written copiously in notebooks, yellow pads and small pieces of paper. The messages themselves are sometimes poignant apologies for the work and the pain her illness is causing; at other times, they are courageous and often lyrical declarations of her personhood.

Before she retired, she worked as a counselor helping people put their lives back together. Throughout her life, Anne has created beautiful things using textiles, and has composed poetry and Haiku. She has been able to continue some creative projects, and uses poetry to catch the essence of her present experience. Sharing directly how it feels to have Alzheimer's is the way Anne  keeps the candles burning in her corner.

My friend Carol Henry must also have sung my Sunday School song as a little girl, because she was the best corner brightener I ever knew. She died this past Sunday morning in the extended care facility where she went to live four-and-a-half years ago. She had gradually faded with vascular dementia, retaining her special set of light-giving activities as long as she could, then gently waiting for the end. Like my father, vocal music was central to her life. She provided opportunities and motivation for others to join with her in a monthly potluck followed by shape note singing, carols at Christmas or old favorites anytime. When she became a single parent and needed to earn a living, she founded a pre-school, based on the Montessori method and also ran a little summer camp program at her house. She gave a good start to untold numbers of children, and when she retired, the pre-school evolved into a full-fledged Montessori elementary school.

Carol had a passion for Habitat for Humanity and worked as a volunteer as long as she could. She also organized her friends into a sewing circle called Stitch and Chat. We spent an afternoon each week making and selling quilted potholders to benefit the local Habitat organization. Carol continued stitching until the proceeds reached $20,000. Other women have continued the work and have raised another $5,000.

I think that her accomplishments are all commendable, including raising four fine daughters who are out there brightening their own corners. However, that is not really what I have missed since she left our valley, nor the memories I cherish. Carol was so successful with children, I believe, because she never lost the sense wonder that we are born with. The very personal connections she made with the living world around her, especially wild flowers, had a joyous yet serious quality that I admired. She brought that same intensity and commitment to Scrabble games, the food she served, the latest statistics from Habitat and the news she had just read in The Yancey Journal. In my own quest to live in the moment, Carol Henry carried a torch that helped to light my way.