On Finding Peace After Great Loss

20 Apr

For Robert

I attended a beautiful and moving memorial service yesterday for a woman who died suddenly and too young. I did not know her but went through school with her brother; her sister and mine are close and my sister couldn’t make it, so I stood for the family. Her father was our beloved family vet, and the death of his daughter makes the second child he has lost.
The service, as these things do, got me thinking about the nature of life and death, love and loss, and how we try to make sense of it all and sometimes don’t succeed. Someone read a passage from Elizabeth Kubler-Ross’ account of her research on what happens after death. According to her, there are five stages, all leading to loved ones who have gone before. I found myself greatly moved by the poignancy of this idea, mostly because I don’t entirely believe in an afterlife, although I wish that I could. I wonder if these are stories to us by our egos, terrified by the thought of annihilation.
My former classmate spoke about his sister and his great love for her, which in itself was heartbreaking and beautiful. But he then had the courage to speak of what he called his rebelliousness, alluding I think to his own doubts. Having lost two siblings seems almost unbearable; but he also has watched his father lose two children. He carries more than his own pain. He implied that he also carries profound questions, if not anger, about the unfairness of it. Why, in fact, does life have to be so hard?
I have asked myself this on many occasions. When I feel myself being sucked into this question, which cannot be answered, I try to recall some wise words I once read. When Bad Things Happen to Good People was written by the Rabbi Harold Kushner, upon learning that his three-year-old son had an incurable, terminal disease and would die young. I find it difficult to relate the eloquence and profundity of the book in just a few words, but the gist, what I held on to, was that the question we should ask ourselves is not, “Why?” but “Why not?”
By way of illustration, a parable: once a woman lamenting the death of her only son approached Buddha. She begged him to bring her son back to life. Buddha told her to bring him a poppy seed from the household of a family that had not known tragedy. She went from door to door, only to return to the Buddha empty handed but filled with understanding.
Our lot in life, which Thomas Hobbes described as “nasty, brutish and short,” includes suffering. It is inescapable. There are innumerable ways to suffer–death, disease, disablement, divorce, to name but a few—and the only control we have over these events is our reaction to them. We grieve, we get angry, we torture ourselves with regret. In the end, though, whoever God is—whether out there or simply a manifestation of ourselves—he wants us to have peace, I believe. But, like the Buddha, he will not or cannot give it to us. We have to try to find it ourselves.
I rely on stories like Kushner’s, or Buddha’s, to help myself find that peace, which can be so elusive. Everyone suffers; why should I, or any of us, be exempt? Since I have internalized this simple, yet difficult, concept, I have found it easier to get back to peace whenever it is disrupted by tragedy. Life is short but does not have to be nasty and brutish, especially if we help each other. This narrative is my humble attempt to offer help by sharing the knowledge of what helped me. If you are reading this and you are suffering, I wish you peace.

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Strokenomics

20 Mar

Strokenomics is a term referring to the situation you find yourself in if you or a loved one suffers a stroke and are forced to live within new means. Hopefully, you invested in a supplemental long-term disability. If you did not, I strongly urge you to do so. Chuck and I were on the verge of buying a policy when he had his stroke, and the difference in our disability income would have been as much as $3,000 per month. As it is, we live on his Social Security Disability Income, a standard long-term disability monthly payment that ends in 2016, and a monthly withdrawal from his retirement. The latter I hate to do, but it must be done in order to make our monthly expenses.

So it bears repeating: if you have not already done so, buy extra long-term disability insurance, which will provide much-needed extra income if you or your spouse become disabled or chronically ill. Furthermore, it will enable your or the loved one to be placed, should it be necessary, in a private healthcare facility as opposed to one run by the state; or offset in-home care, which can be very expensive but can greatly relief the burden of caretaking/enable you to be cared for in your home. Do it today, or you may be put in the situation in which I find myself, a full-time caretaker unable to work outside the home because hiring a caretaker for Chuck would reduce my hourly income to about $5.00.

Not to say that we are destitute. We are very lucky to live in a First World country and to have excellent health care and good, basic insurance. However, when Chuck’s standard LTD runs out, we will lose almost $800 per month, forcing us to dip deeper into his retirement fund. Unless, of course I can make my writing profitable, which I am working on. But if we burn through his retirement, and nothing is left when I’m retirement age in 15 years, what will we, or I, live on? Chuck is 11 years older than I, and his health is somewhat comprised by his disability, so chances are I will outlive him. I haven’t been paying into the Social Security system since I began caring for him almost seven years (2393 days) ago. In addition, having worked erratically and, as a writer and a teacher, never having made a big salary, what I will draw most likely won’t cover all my expenses. I have worried myself sick over this imagined future until I finally forced myself to let it go. I’ll do what I have to do, when I have to do it.

Meanwhile, I have found ways to economize, and I thought I’d share in case anyone else in a similar situation might benefit from my ideas. Strokenomics may be used by anyone who wants to cut corners, by the way. Also, I’m sure I haven’t thought of everything; so if you are reading this blog and have some ideas, please leave them in a comment.

First, I buy 95% of my clothes (and household items such as glasses, pots and pans, etc.) from thrift shops. Even if I could afford to buy new clothes, at this point I don’t know that I would (unless I win the lottery, my secondary plan): why would I want to pay $30 for a blouse that I can get for $4 at a thrift shop? An additional benefit is that I’m not supporting outsourcing, and my carbon footprint may be reduced by about 10%, according to Patrick Barkham in an article, “10:10 Fashion: Can I Give Up Buying Clothes for a Year?” in the on-line version of “The Guardian.” I draw the line at shoes, however, because I am squeamish about wearing someone else’s footwear. However, I save money by purchasing shoes on sale, getting them at about 40% off.

Giving up meat will reduce the grocery bill, as well as lower your carbon footprint and diminish cruelty to factory-farmed animals. According to a study conducted by the Environmental Working Group, “Lamb, beef, cheese, pork and farmed salmon generate the most greenhouse gases. With the exception of salmon, they also tend to have the worst environmental impacts, because producing them requires the most resources – mainly chemical fertilizer, feed, fuel, pesticides and water – and pound for pound, they generate more polluting manure.

“On the health front, the scientific evidence is increasingly clear that eating too much of these greenhouse gas-intensive meats boosts exposure to toxins and increases the risk of a wide variety of serious health problems, including heart disease, certain cancers, obesity and, in some studies, diabetes.” For more information, including a chart detailing the Full Lifecycle Greenhouse Gas Emissions from Common Proteins and Vegetables, please go to http://www.ewg.org/meateatersguide/a-meat-eaters-guide-to-climate-change-health-what-you-eat-matters/climate-and-environmental-impacts/.

Sometimes I feel I’m being nickled and dimed to death. In these cases, I have learned to reciprocate. For example, I recently dropped a couple of movie channels, lowered my Internet speed and reduced my phone (landline) features for a net savings of about $50. I don’t own a cell phone (that’s what I said), so there’s $30 or so.

Some other means of saving include:
Eat out less.
Wait until the movie comes out on DVD.
Lower your thermostat a couple of degrees by day and even more by night.
Recycle paper you use for the printer by using the other side for drafts; or rip them up and use to jot down notes or lists.
Sell stuff you don’t want on eBay.
Cut coupons for groceries.
Look for bargains or two-for-one sales.
Buy secondhand furniture from consignment stores.
Buy a used car, or at least a low-mileage or hybrid vehicle.
Don’t get another cat! Or dog: pets are expensive. One, or one of each, is enough.

Finally, buy lottery tickets. (Just kidding! Sort of. But don’t spend too much on these. Besides, the fewer people who buy, the better my chances of winning.)

As I mentioned, I’m sure other ways exist to employ strokenomics. Please let me know if you think of any. And while I hope you don’t have to implement a strokenomic plan, good luck if you do!

The Sword Cuts Both Ways

16 Feb

Valentine’s Day has not been much fun since Chuck had a stroke. It seems as if everyone (at least everyone on Facebook) was getting flowers or candy, or making plans for dinner. Chuck always was very thoughtful on this day. He would draw me a little cartoon in the morning before going to work. When he came home, he would bring flowers and a card. Now he doesn’t even realize it’s Valentine’s Day, much less wish me a happy one or get me a gift. This February 14th, I kept myself busy all day to avoid dwelling on what I’ve lost. Toward the end of the day, I realized I really hadn’t felt that bad, which was novel. I decided to post something about it on Facebook. Here’s what I wrote:

“I was tempted to feel sorry for myself today, but then I remembered all the times Chuck brought me flowers when it wasn’t even St. Valentine’s Day. I’m lucky that I found someone who genuinely caring, thoughtful, generous, and so many other wonderful things. He still is, even if he can’t express it in the tradition ways. I’d rather have him here, as is, than all the flowers, candy, and “Be Mine” cards in the world. Plus, he’s given me the biggest gift of all: a way to express MY love in a way most people aren’t called upon to do, by taking care of him.”

I was surprised and overwhelmed by the responses I got. Forty-eight people “liked” the post and 15 people commented. “Laura, this is the most beautiful thing I’ve seen all day!!! What a fabulous valentine for your husband!!! What a beautiful spirit you have!” said one person. “I don’t know your story, but I’ve never heard a sweeter Valentine!” said another. I was very gratified by these and all the other kind words. Each time I got another, I felt I had received a little Valentine.

However, as I appended to the post, the sword cuts both ways. My words that day were sincere, but today I felt differently; I was seized with panic at the magnitude of my responsibility, which entraps me. I would love to take off, like I used to do, to visit my sisters or a friend; but I can’t leave Chuck by himself for a weekend. I need a break now and then, but I am not in control of it anymore, and I resent that fact.

I know it will pass if I don’t dwell on it. So as soon as I post this, I’m going to go out in the sunshine of a warm winter afternoon and take a long walk with my dogs. I will endeavor to release the panic and resentment and let them be replaced once more with gratitude and acceptance. The battle never ends; the sword is always poised. I just have to keep on fighting.

Stroke Happens?

6 Feb

 

I’ve just completed what I hope is the final draft of my manuscript of Stroke Happens: A Caretaker’s Story, which differs greatly from the first attempt. A former professor has looked at it and thinks it’s ready for a publisher and/or literary agent. I’ve submitted it, in this and a former version, to dozens of publishers and either received rejections or no answer. I’ve registered for a writer’s conference in Atlanta, where I will have 15 minutes with a publisher, who will look at the first few chapters; and an agent, who will read my proposal. I’ve blogging again and I plan to create a Facebook page to publicize it. Still, I have more to do! I need to write articles and give presentations and/or interviews, all a part of building a platform. I didn’t know it was going to be this much work, or I might not have started. But that’s not true. When I began writing Stroke Happens, the words gushed out of me; I had no choice. I started writing and didn’t stop for three months. Every day, I sat feverishly in front of the computer and tip-tapped away at the keys until I had about 30,000 words. Then no publisher wanted it, so I filed it away.

Three years later, and a move back to Pendleton, I get an offer to write a different book. I wasn’t as intimidated as I might have been, since I already had written 30,000 words and knew about how long it would take and that I could do it. So now I have a book, The Chattooga River: A Natural and Cultural History. I thought it might impress someone in the publishing world. No.

I never thought I’d say this, but I hope Stroke Happens.

How to Communicate With Someone Who Can’t Talk

4 Dec

I was fossicking around in my stroke-related files, looking for blog ideas, and I came across a document I put together several years ago after Chuck and I returned from an six-week, intensive speech therapy program. The subject is supportive communication and how to engage in it with someone who has aphasia, a condition that can result from a stroke or other head injury and results in a loss of language or the ability to speak normally.

These notes represent my attempt to find Chuck some way to communicate with others and they with him. His aphasia is so severe that he was unable to learn to speak again, and ultimately, he preferred to communicate in his own way and seems to be satisfied with it. I’m going to present the material as if I were instructing someone how to communicate with Chuck; but if you know someone who has aphasia, simply substitute that person’s name in place of Chuck’s.

How to Engage in Supportive Communication

1. Choose a time when Chuck is fresh and a place with few or no distractions. People who suffer from the affects of a stroke or head injury tire easily and are easily distracted by extraneous noise or activity.

2. Make sure Chuck has his dry-erase board and marker, picture dictionary, and photo albums.

The dry-erase board and marker were absolutely brilliant assistive tools and were suggested not by a speech therapist but by my niece Anna, who is a counselor who specializes in working with children. Chuck, being a skilled artist, is able to sketch representative, descriptive, often comical drawings to indicate ideas and needs.

Chuck was provided a picture dictionary while at the speech therapy “camp,” but found it troublesome to use. I think that for him, too much was going on. The pictures illustrated, for instance, a market full of people, food, items, and so forth on the page. To identify a single item—let’s say an apple to indicate he wanted one for a snack—took too much effort. Possibly, his defective vision was the problem; he has a right field cut, meaning he lacks vision on the inside of his left eye and the outside of his right eye, a result of the stroke.

Photo albums, either existing ones or new ones designed just for him, were a great success because he liked looking at them. Also, these were good for practicing names. Unfortunately, Chuck is not able to recall to whom I’m referring when I say the person’s name, even though he does recognize people. Some aphasia sufferers are able to improve, even learn to talk normally again; using photos and pictures, and even flashcards naming objects, are very helpful in helping them remember and relearn.

3. Start off asking him if he has a topic he would like to discuss, using one or all of the tools above.

4. When he points to or draws something, ask him to say it. Give him time to formulate the word, and ask if he would like you to write the word. If he continues to struggle after about 20 seconds, or if he asks for help, prompt him. If he cannot get it by himself, say the word and have him repeat it. Be patient. Give Chuck time to process, prepare, and articulate. This process will be fluid, so continue using the technique described as the conversation moves from topic to topic.

5. After Chuck has a turn, spend the same amount of time telling him about yourself or something of interest to you or how your day is going. Speak slowly, repeat frequently, and use the dry-erase board to write key words and illustrate concepts in order to increase his comprehension. Newspapers and magazines are a good source of topics. Be patient. Give him time to understand your message. Repeat the message as needed.

6. After about a half-hour, progress to an exercise or game.

Additional Information

If you are talking to Chuck and me, or if there is a group of people involved, be sure to look directly at Chuck during the course of the conversation. Unfortunately, I have noticed that since Chuck is unable to contribute to a conversation, others tend to ignore him. I’m not sure if they are uncomfortable or if they think he can’t comprehend what they’re saying. Possibly, he cannot; however, ignoring him is, frankly, rude. It also can aggravate the isolation and loneliness frequently experienced by people who have aphasia.

Chuck has expressive aphasia, the inability to access speech; and receptive aphasia, or difficulty understanding speech. He also has apraxia, or difficulty manipulating the musculature of the mouth. His intelligence is intact, so please remember and respect this when you communicate with him.

I’ve been told that a hallmark of aphasia can include a disinterest in the lives of others (as well as other personality changes). I’m not sure if this is organic/structural or the result of being the center of attention during a long period of rehab. Chuck definitely has become detached since his stroke, his emotional repertoire drastically reduced. Possibly, the antidepressant he’s taking contributes to, but I don’t believe is completely responsible for, the change. At least, unlike some stroke and head injury survivors, his basic mode is pleasant. I understand that some become mean or extremely depressed. Chuck usually is cheerful and easy to be around.

Chuck’s Arm

3 Dec

Six years post stroke, Chuck’s arm remains paralyzed. Many stroke survivors do get function back, and it’s hard to predict who will or will not. I decided to act as though Chuck would and became very proactive, spending hours surfing the Net looking for alternative or supplemental treatments and assistive devices. I want to share my findings, in case they might help someone else in some way.

Clinical Trials
Clinical trials are free but experimental, designed to test new therapies or medical treatments. We ended up not being involved in any, but I spent many hours searching the lists. They are typically sponsored by the federal government and private hospitals, universities, and research centers. Here are some links to information:

http://www.stroke.org/site/PageServer?pagename=clinicaltrials
http://www.strokecenter.org/trials/
http://www.centerwatch.com/clinical-trials/listings/condition/142/stroke

Constraint Induced Therapy (CIT)
I read about CIT in The Brain That Changes Itself, by Norman Diodge. CIT involves restricting the use of the functional hand and thereby forcing the affected arm to work. The action of movement, even if a therapist manually produces it, causes neurons to fire. The arm communicates to the brain, “Hey, I’m still here! I need neurons.” Treatment takes place daily and lasts several hours. This kind of intensive therapy has been shown to be more effective than conventional therapy, which usually takes place three times a week. In order to qualify for this program, potential participants must have the ability to make a fist, which Chuck never was able to do.

The Mirror Box
The brain is the most complex organ of all the organs, containing the universe and the sum of all we know, as well as managing all our involuntary bodily functions and reflexes. This is why we don’t have to think about breathing. When brain cells are killed, as in a stroke, they don’t grow back. Luckily, the brain has plasticity; it can compensate for such loss with neurons, which can grow new pathways around the damaged area. However, when a limb, especially an arm, is paralyzed as a result of a stroke, it suffers “learned disuse,” and the brain has to be coaxed into giving back function to the arm. Sometimes, it has to be tricked. This is how the mirror box works.

The mirror box is constructed of slick fabric stretched around wires. On one side on the outside of the box is a mirror. The affected arm is placed inside the box, where it cannot be seen; the functional hand rests outside the box, facing the mirror. The patient moves the functional arm while looking at its reflection in the mirror, imagining he is moving the affected arm. The brain is thereby tricked into communicating with the arm, which is what has to happen in order for the arm to move. Best of all, they only cost $40.

The Biffy
In some cases, the caretaker of  the stroke survivor has to assist in cleaning after a bowel movement. In order to avoid this task and to spare Chuck’s dignity, I turned to the Internet, where I discovered a gadget that improved our quality of life to a great degree: the Biffy. It fits onto the toilet bowl and diverts water, by way of the intake valve, through a spout that sends a jet of water into the nether regions when the user pulls a lever. The cost was $100, well worth it. The company’s web site is located at https://www.biffy.com.

Knowledge is Power
I also found other sources of information on the Internet, such as free magazines Stroke Smart and The Stroke Connection and books like My Stroke of Insight; Head Cases: Brain Injury and Its Aftermath; and The Brain That Changes Itself. I read as much as I could, on line and off, about stroke.

Educating myself was one of the best ways I was able to help Chuck. I gathered a mass of information—some helpful, some not—much of which no doctor or therapist ever told me about. In addition, doing the work helped me feel more in control of a virtually uncontrollable situation. Fact-finding became a form of free therapy, which kept me from feeling helpless and filled up many hours that otherwise might have been spent despairing.

Stroke Happens: Chapter 1

30 Nov

Below is Chapter 1 of Stroke Happens, which I hope will be published in its entirety someday. Comments or advice welcome.

 

Chapter 1: Stroke Happens

 

“How bad is it?” I asked the doctor. “It was a major event,” he replied as he pinned a film of my husband’s brain onto a light board. The right side was grayish and crisscrossed with a network of crooked lines, like an aerial photo of creeks and streams converging into a river. In contrast, the left side was white, like vast, snow-covered tundra.

 

“He’s going to live, right?” I stammered.

 

“The next 72 hours are critical,” replied the doctor before walking away. I stood, stunned and uncomprehending, in the bright white hallway, staring at the whiteout of Chuck’s left hemisphere.

 
He had suffered a stroke—a cerebral vascular accident—in the middle of the night. My insomnia had driven me into the guestroom, where I was sleeping when Chuck’s symptoms started. I’ll never know what they were. Did he have pain restricted to one side of the head? Weakness, numbness or paralysis on one side of the body? Problems walking? Loss of sight or other vision problems in one or both eyes? Confusion? Sudden inability to speak or to understand speech? What I do know is that the next morning, when I got up and walked back to the still-dark bedroom, he was unable to respond when I asked him if he was getting up. I turned on the light, and life changed forever.

 
His left pupil flared open in response to the sudden illumination; the right one remained pinprick small. Dried vomit crusted the pillow, and his breathing was raspy and effortful. He was unable to respond when I asked him what was wrong, although I had guessed. He just looked at me. I rushed to the phone to call 911, and the EMTs were there within five minutes, strapping him onto a gurney and wheeling him away. The ambulance, flashing and wailing, sped away as I called a friend to come and take me to the hospital.

 
When I arrived at the hospital, Chuck had been installed in a chilly cubicle in an emergency room bristling with nurses. He recognized me, but was disoriented and unable to respond. His t-shirt had been scissored off and tossed in the garbage, the logo for New Orleans band Washboard Chaz draped over the lid. Technicians whisked him away for x-rays. An octopus of anxiety wrapped its tentacles around my stomach and squeezed; I knew I was waiting for bad news. Time seemed to stretch until finally, the neurologist appeared with the results of Chuck’s X-ray. The left distal carotid artery—the river that transports oxygenated blood to the brain—was completed blocked.

 
In an instant, a clot had interrupted the flow of blood to Chuck’s brain, depriving it of oxygen for hours and defining the rest of our lives.

 
Chuck was transferred to the Neuro Intensive Care Unit (ICU). He remained conscious. Intravenous lines snaked from bottles hung around the bed and into his arms, transporting medicine and food. Therapists came and went, performing tests that would help determine the extent of the damage. I hovered helplessly. Chuck flashed me a thumb’s-up sign and smiled crookedly. The right side drooped as if it had nothing to do with the rest of his face. All I could do was wait. My sisters Mary Lou (from Hillsborough, North Carolina; five hours away) and Betsy, with her husband, Rob (from Charleston; four hours away) arrived and we sat around until night started to fall. We had been there for about ten hours. Chuck’s condition was stable, so my sisters persuaded me to go home and get some rest. When I got there, I wrote the first of what would be hundreds of emails to a list of family, friends, and colleagues.

 
Friday, August 31, 2007
Hi,
I am writing to let you know that Chuck had a stroke this morning. He’s now at the hospital, in the Neuro IC. The neurologist, after reviewing the x-rays, called it “a major event” and said that the first 72 hours are critical. The clot completely blocked the major cerebral artery, which is bad news. He is thus far paralyzed on his right side and cannot talk, although he responds to commands and recognizes people. We hope that he will not hemorrhage in the brain, which could endanger his life. If he makes it through the weekend, it will be a long road to any sort of recovery.
Please keep us in your prayers. Thank you.
Love, Laura

 
My update about Chuck’s condition became a medical-progress report, a forum for my emotions, a request line, and the story of his struggle to recover. “People who tell a cohesive, full narrative of what’s going on with them stay so much more connected and attached to those who are most important to them, and that provides stability and consistency in times of change,” according to my friend Hamilton, who’s a psychiatrist. I was building a network of people, a community that would support me in the aftermath of Chuck’s stroke.

 
Everyone was shocked. Chuck had no risk factors. He worked out regularly, was tall and lean, ate the right foods, and drank two glasses of red wine daily. Bespectacled and boyish with mop of brown hair, he looked younger than his age, 56. He suffered from occasional stress, but he was a college professor, not an air traffic controller. For 17 years, Chuck had been teaching elementary education students at Clemson University in Clemson, South Carolina. He loved teaching, as well as conducting research, writing journal articles, collaborating with colleagues, serving on the faculty senate, and writing grants. He had tenure and was highly regarded by his peers and students, evidenced by graffiti reading, “Dr. Linnell rocks!” in the elevator of his building. We had been married for 11 years. I taught in the English Department.

 
The previous week, we had started the fall semester, a busy and stressful time. That night, a Thursday, we were tired but were relaxing in front of the television, sipping wine and digesting supper. About 8 o’clock, Chuck mentioned he had a headache and was going to bed, not especially unusual at the beginning of a semester. He didn’t say he was in undue pain and, he didn’t describe any of the troubling symptoms that often presage a stroke. I decided to sleep in the guestroom to avoid disturbing him with my start-of-the-semester insomnia. For a long time I beat myself up about this. I’ve asked myself, over and over, if the outcome would have been different had I slept with Chuck that night. I’ll never know. What I do know is that at some point, stroke happened, and life changed forever.

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