Archive | November, 2013

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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Take Care of the Caretaker

26 Nov

I’m working on a manuscript I wrote about Chuck’s stroke and my experience as his caretaker. It’s called, not surprisingly, Stroke Happens. Today’s post is an excerpt I hope illuminates the fear of being forgotten, the fear that caretakers feel once the crisis is over and people start to move on:

“About this time, some people congratulated me for being so strong, even though I felt as fragile as a hummingbird’s egg. I suspected they were just trying to make themselves feel better, or that they wanted me to move on. What they didn’t understand is that time stands still when you’re dealing with a long-lasting chronic illness or permanent disability; sustained, consistent help is needed for months, sometimes years. I still needed help and was terrified that people were going to abandon me. My response was to write a blunt, almost accusing, email.”

After which I received a slew of support and offers of help.

My points are: if you are a caretaker, ask for help when you need it; if you know a caretaker, offer help on a consistent and ongoing basis.

Should I Stay or Should I Go?

25 Nov

I can see why some spouses leave their stroke survivors. They can’t live with the idea that the person they married has been replaced by a disabled person who needs full-time care. I felt staying was my only option; if I left, Chuck would have to be institutionalized, which I couldn’t bear. In short, I stayed not because of the great love I felt for Chuck, but because of my feelings of empathy and compassion.

I did love, and do love, Chuck. However, since I became his caretaker, the nature of that love is different. I can live with the changes that have occurred in our relationship since Chuck suffered a stroke and became disabled. I’m sure some people cannot, although I don’t know of any studies that indicate a higher rate of separation in the aftermath of stroke. It’s hard to have to redefine a marriage and to let go of certain hopes for the future.

Funnily, before Chuck’s stroke I used to be very judgmental of people who left spouses who got sick or disabled. I thought, “I would never do that.” Even though I was right, being put in that position made me more understanding of people who choose to leave. Ultimately, they have to live with themselves over their decision, and I can imagine how painful it would be.

I “decided” to stay, although it was not a moment in time. It was more of a realization that grew as I started to accept the fact that Chuck always would be without the ability to speak, read or write. As he is trapped by his disability, so am I, although in a different way and voluntarily. I sometimes try to imagine being free, what I would do with my life, where I would go. My longing for freedom sometimes is so intense that it’s painful. But I know that the pain I would cause Chuck, and the guilt I would feel, outweighs my desire to be free. So I stay.

I admit these very personal feelings because I suspect other people have them as well, and I want to say, “It’s normal.” I also want them to know that while the caretaking life has meaning in itself, it’s doesn’t have to define them. In my next post, I’ll relate how I was able to find fulfillment while still being the caretaker for my stroke survivor.

Moving On

24 Nov

    The other day I announced to my email list that I had started a blog. I received a message from a friend congratulating me on my “blob.” I laughed, but when I sat down to write today, I froze. I couldn’t decide what to write about. I felt like a blob, indeed, hands poised over the keyboard, waiting for the words to come. I felt I needed to write about Chuck’s stroke, therapy, recovery or how I coped with it. But I didn’t feel moved, so I pondered on it for a while. I think I understand, now.

     When Chuck had a stroke, it took over my life. However, six years have passed, and I have moved on. It’s now hard to recall much of the experience or my feelings during that time. The stress of that time blurred my memory of events. So how to proceed? Maybe this post should relate how I moved on, because I do remember a time when I thought I never would be able to. I was every bit a victim of stroke, albeit in a different way, as Chuck. While I would not describe myself as “happy,” exactly, I have found a level of contentment and fulfillment I never thought possible. Maybe I should describe how I got there.

     The first step, obviously, was to get through the crisis itself. Next was to get Chuck what he needed in terms of continued therapy, which absorbed most of my energy for the first year and was driven in part by my desire for his complete recovery. When I realized that was not possible, I then had to accept it, which was one of the hardest things I’ve ever had to do. I had to let go of the idea of Chuck as he was before the stroke, a very painful process because that was the prize I had been reaching toward, the finish line that had kept me in the race.

      I spent the next couple of years avoiding reality by moving, twice. We left our small town to move a small city, and then back again. I missed having access to my form of therapy: hiking in the woods, swimming in the lake, walking in the country. However, during our sojourn to the city I received some gifts I would not have otherwise. The first was yoga. The second was being able to be present for a dying friend. The last was rediscovering my love of writing, which has helped me redefine my identity. I started writing again, and five years later I wrote a book. I have a manuscript in progress and an idea for the next project simmering on the back burner.

     My point is that I had to actively seek contentment and fulfillment, not wait for them to find me. For a time, I lost myself in the role of caretaker and as a victim, ultimately not enough for me. I had to find myself, or more specifically the self I had become, and merge it with my new role as Chuck’s caretaker. The act of writing, or finding my voice, enabled me to move on while remaining in place.

    

Your Best Resource: Yourself

21 Nov

Your loved one has just suffered a stroke. What should you do? I’ve compiled a list of things I did after the initial crisis passed. I hope it will help anyone else who’s trying to cope with the stroke of a loved one. Keep in mind that this list constitutes my opinions based on my experience as a caretaker. These are things I did or wish I had done.

1. Get the best medical care available. Make sure a neurologist is on staff. Some hospitals don’t have one, believe it or not. If yours does not, transfer your loved one to a hospital that does.

2. Apply for Social Security Disability Income, even if you think your loved one won’t need it. Benefits don’t start until five months after APPLICATION, not the date of disability, with no retro activity.

3. Demand that therapy start as soon as possible. Anticipate therapy after hospitalization and start making calls now; every facility will have a waiting list, and you want to get your loved one on it as soon as possible. Also, do not be afraid to dismiss a therapist you or your loved one doesn’t like, for whatever reason.

4. Research treatment options; don’t depend on the experts to know everything. Find out if any clinical trials are running, or where the best therapy is for specific conditions, such as aphasia.

5. Create an email list of family, friends and colleagues so that you can communicate about your loved one’s condition and ask for help when you need it.

6. Ask for help! People want to help but often don’t know what you want. Tell them, whether it’s food, a ride to the hospital, someone else to visit your loved one so you can take a break, or just a kind word. Caretaking is a grind, and you may be doing it for a long time, so pace yourself.

7. Wallow in self-pity if you must (I did), but try to take care of yourself. Did I mention caretaking is a grind? All the more reason to take care of yourself. Exercise, eat well, don’t overdo alcohol. If you feel depressed, ask your family physician to prescribe meds.

8. Read everything you can get your hands on about stroke: books, magazines, articles, both in print and on line. Look for a future post with a list of books I found helpful.

9. Start a journal in which you can record events, as well as your feelings. In the chaotic aftermath of a stroke, you may forget things, so it helps to write them down. Also, sometimes you might not realize how you’re feeling until you write it down.

10. Anticipate what your loved one will need upon coming home. Ask the therapists what these might be: a handicap ramp; removal of rugs that might cause tripping; shower seat; etc.

About Laura Ann Garren

21 Nov

I have been a writer for more than 25 years. I started out as a newspaper journalist and make forays into newsletter editing and teaching college-level writing and literature courses. I had begun another venture based on my love of dogs, working on becoming a certified trainer, when my husband Chuck suffered a massive stroke in 2007. Very soon, I realized that my new full-time job was to take care of him. I quit my teaching gig, suspended my dog-training certification process, and concentrated on getting Chuck the care and therapy he needed.

With the passing of time, Chuck needed less care, so I resumed my studies toward becoming a dog trainer. I also developed an overwhelming desire to share Chuck’s and my story, so I began to write. Every day, for up to eight hours, I sat in front of the computer and wrote. The words poured out, and in about three months I had 35,000 or so words, a manuscript I called Stroke Happens.

I then started the hard part: finding a publisher who would read, much less publish, Stroke Happens. Naively, I thought I would be successful because when I was in the throes of the stroke experience, I found a dearth of information from a caretaker’s point of view. I was sure that a market existed; however, I could not find a publisher that would look at my manuscript. The overwhelming response, when I got one, was that I needed “a writer’s platform.”

Then I had an opportunity, to write an article for South Carolina Wildlife Magazine, about a bird that was spotted nesting way outside of its range (see http://www.scwildlife.com/pubs/mayjune2012/atourist.html). The editor liked my work and invited me to write more stories, so I did. I  also got a call from an editor at The History Press out of Charleston, SC, wondering if I would like to write a book. Yes.Garren Biz Card copy

A year later, I was the author of The Chattooga River: A Natural and Cultural History (see http://www.amazon.com/Chattooga-River-Natural-Cultural-History/dp/1609499859/ref=sr_1_1?s=books&ie=UTF8&qid=1378334467&sr=1-1).

Now I have a writer’s platform, although not in the area of stroke; therefore, this blog. I also hope to publish excerpts or chapters from Stroke Happens in an attempt to entice publishers. Meanwhile, I will post on this blog. Please comment and/or ask questions. My goal all along has been to share my experience with other caretakers and stroke survivors, particularly those who suffer from aphasia.

And wish me luck publishing Stroke Happens. Because it does.

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