Out of the blue

With a Master’s degree in social work and a Ph.D. in psychology, Kathleen’s memory skills were never in doubt. For 25 years she had a busy psychotherapy practice in Rutland, Vermont, treating about 30 patients per week. But on June 18, 2001, her life changed. She was heading on Route 89 toward Rutland from Boston, where her husband worked during the week as an orthopedic surgeon and assistant professor at Harvard Medical School. She felt some chest pain, pulled off the road, and suffered a severe heart attack.

From the outward signs, anyone would have assumed her healthy: a non-smoker and an expert skier, she had normal cholesterol and no other obvious cardiac risk factors. What she realized later is that her family genes carry a deadly propensity to coronary disease. Her brother died from a heart attack in his mid-40s. Her mother had died at 65 of the same, as had her father (Kathleen’s grandfather). “I am the fourth person in three generations to suffer a catastrophic cardiac condition,” she says, “and the only one to survive it.”

Alone and stricken in her car, Kathleen was about to become one of the hundreds of thousands of Americans who succumb every year by sudden cardiac death. Lady Luck intervened. “Fortunately a police officer was driving by and wondered why my car was on the side of the road,” she explains. “When he reached me I was in full cardiac arrest. Another minute or so and I wouldn’t be here.”

Fortunate accidents

Another fortuitous event was the fact that she had the heart attack near Dartmouth Hitchcock Medical Center. “I wasn’t breathing but had a pulse, alive but not long for this world,” she explains. The police officer who stopped had 25 years of experience. “He knew CPR cold, knew just what to do,” Michael says. The officer started CPR and called the rescue squad. Kathleen’s heart stopped four or five more times on the way to the hospital, and she had to be shocked back to life. Each episode interrupted the flow of oxygen-rich blood to her brain, causing brain cells to die. The technical term for this is anoxic (“no oxygen”) brain injury.

At the hospital, things didn’t look good initially. Doctors called her husband in Boston. “They said you better get up here right away,” Michael recalls. “The chances of survival are very small.” She’d been in the ER for only an hour and her heart had stopped four more times.

After further testing, doctors discovered that an artery in the back of her heart—the circumflex coronary artery—was blocked. They performed balloon angioplasty to widen the chokepoint in the artery and installed a hollow metal tube, or stent, to hold it open. Because of the damage to Kathleen’s heart, doctors also eventually installed a special pacemaker called an implantable cardioverter defibrillator (ICD) to automatically shock her heart back to life should it go into arrest. (People who experience cardiac arrest once are at much higher risk for a second episode.) She has since undergone another angioplasty to open a second coronary artery, which was found to be 80 percent blocked.

The recovery

Kathleen recalls virtually nothing of her post-heart attack stay in the hospital. She remained in a coma and on a respirator for nine days. After two weeks in the hospital, she was transferred to an inpatient rehabilitation unit at Rutland Regional Medical Center. She remained there for five weeks undergoing daily physical, occupational, and speech therapy—much the same rehab she would have received for a severe stroke.

Among other things, the anoxic assault damaged her hippocampus, a part of the brain critical to forming new memories. As a result, she could experience life in the present, but retained little of it in memory. Kathleen could talk, but her memory for recent and distant events was severely impaired.

These conditions are known, respectively, as anterograde and retrograde amnesia. At first she didn’t recognize her current husband, calling him by the name of her ex, Joe. She wandered away from her room and couldn’t find her way back. She didn’t know that her parents and brother were dead, and didn’t recognize the name of her partner in her psychotherapy practice.

Progress report

After completing inpatient rehab, she went to Boston to live with her husband, attending outpatient rehab several mornings per week for several months. She finished in January 2002, and it took six months until she could drive, dress, and perform all of her basic activities of daily living.

Today, Kathleen faces several cognitive impairments common to people who have experienced brain injuries. Her ability to form new memories is impaired, although relatively important events tend to persist. “If people tell me something that is important to remember, then I find I’ll keep it right there with me. I remember conversations that had some interest to me,” she says. “But if you asked me what I did yesterday, I might have some trouble, if there wasn’t anything in particular that I did. That’s different than before, because I did have a very good memory before.”

In addition, her memory of her adult life since her 20s is sporadic, with the exception of most places where she spent a lot of time. “I’ve forgotten every recipe I’ve ever known, so I’ve had to relearn cooking,” Kathleen says. Now and then, older memories float to the surface—like the time she and Michael were skiing in Whistler, Canada, and walked past a certain bar. “I said, ‘We met there for a drink once.’”

Kathleen has also had to make some adjustments in terms of how much she can take on, how well she can expect her brain to perform. She finds it more difficult to learn new tasks, and if she demands too much of herself too quickly she may become confused or frustrated “I’m not quite as skillful,” she explains. “I don’t do things very quickly. I was always quick at everything that I did.” For example, at her first Thanksgiving after the injury, she had planned to cook. “I got midway into it and I just couldn’t do it,” she says. “I was a mess. And I was upset about that.” In the wake of her injury and recovery, Kathleen developed some depression, for which she has received counseling and medication.

Coping with memory loss

But these struggles have not derailed her. Speaking to Kathleen, you hear a serious, mature woman, now 56, coping with her situation with no outward bitterness or anger. The essence of her confident, can-do former self is still there, even though she admits to feeling less confident and less able to do the things she wants. This has helped her to get through the ordeal. “I’ve always taken things fairly calmly. I’m not one to fly off the handle. I think I’ve been a fairly healthy person psychologically. All of my earlier training in being a person who wants to do well and works at it—I tend to be a fairly determined person—has all come through.”

She also credits the support of friends, colleagues, and especially her husband with helping her through the worst of it. “Michael has been wonderful. It just doesn’t bother him. He helps me out with the things I don’t remember well, but he does not see me as abnormal. I worry that he is making adjustments for me, and I’m beginning to realize that what he’s doing is what he’s always done. What is very useful is knowing that you are the same person in every respect that you’ve always been.”

For day-to-day coping with memory impairment, Kathleen relies on a handheld Palm Pilot computer. All the details and plans she would have formerly kept “in mind” now reside in the memory chips of the Palm Pilot. Some of the information is in the form of lists: things to do; foods to buy at the grocery store; the names of people she meets; items she sees in stores that she might want to buy for her husband; people to call; her medications; books to read; good restaurants she has been to and might want to go to again; and medical appointments. She checks her lists in the morning and again in the early afternoon. Other files on the computer contain instructions for how to operate equipment, like her VCR, and notes on conversations. She uses a small digital recorder, kept at her bedside, to store “interesting thoughts.”

Future plans

While in Boston, Kathleen occupied herself as much as possible with volunteer work, including working with an addiction recovery program and adult reading education project. She hopes to move back to Vermont and return to doing limited psychotherapy with a handful of patients, perhaps by recording the sessions and taking very detailed notes to make up for her memory impairment. Other plans include starting a web-based online support group for people with anoxic brain injuries and speaking more to the public about her experiences.

However, she cautions others with similar memory impairments to guard against “taking one’s disorder as the sole fact of one’s life, even though hardships are pervasive,” as she wrote in a letter about herself to Memory Loss & the Brain. “My loss has become so focal for me that I am afraid it has become something that will occupy my conversation well past its utility to focus on it. People only need to know that it happened, that there are compensations, and that life has other important aspects to it.”

Over time, Kathleen has become somewhat less self-conscious about how “different” she is due to her brain injury. “When we were out with friends, I would always ask my husband, ‘How did I act?’ I had some ridiculous ideas of what it is like to be brain-damaged like I am,” she explains. “I’m realizing now that I look and act just like everyone else. It’s been a gradual process of finding that I really am quite fine.”

For further information about anoxia and brain injury:

National Institute of Neurological Diseases and Stroke
Anoxia/Hypoxia Information Page
http://www.ninds.nih.gov/health_and_medical/disorders/anoxia_doc.htm

Brain Injury Association
105 North Alfred Street
Alexandria, VA 22314
Email: [email protected]
Website: http://www.biausa.org
Tel: 703-236-6000 800-444-6443
Fax: 703-236-6001

“Over My Head,” by Claudia L. Osborn. (Andrews McMeel Publishing: 2000. 256 pages, paperback). This is an autobiographical account of a doctor who sustained a serious brain injury and her recovery.