by Rex Malcom
Stroke Month is a comin’ and Channel 7 KABC- TV is helping the AHA celebrate the event’s educational opportunities with interviews of stroke survivors. The scene is a sunny, verdant Manhattan Beach backyard, territorially marked by a playhouse, a swing set, a dog named Jenny, a cat named Lucy, a caged bird named Pepper, and a rabbit named Honey Bunny. Channel 7’s Liz McHale is interviewing Kate Adamson, whose home this is.
From a near-vegetative state just under two years ago, Kate has come a long way. She walks with a four-footed cane. She drives. She testifies before the US Congress. She addresses an AHA volunteer leadership conference. She runs a stroke support group. In what may be the most perfect articulation of the recovering stroke survivors mission, Kate Adamson calls herself “a work in progress.”
A lot of people at Kate’s bedside on June 23, 1995, didn’t think “stroke.” On one hand, she had a severe headache, dizziness, numbness, slurred speech—all signs of a possible stroke.
On the other hand, she was only 33. She was a dark-haired, dark-eyed beauty; a runner, a golfer, and on the way to certification as an aerobics and fitness trainer. She was, in short, an athlete of vitality and substantial ability. But being 33 was almost fatal to Kate. It all but eliminated medical consideration of what in a 63-year-old might have seemed obviously a stroke.
Kate’s story of the first hours following her stroke is nightmarish. The underlying theme of the nightmare was that, since Kate was so young, she must be suffering from something other than a stroke. So her rescuers looked for something other, giving the stroke a loose-cannon quality that all but doomed her.
The ER doc did take steps that saved her life, but his experience denied the probability of stroke. The life he saved was severely– perhaps permanently– marked by damage too far gone to reverse when the stroke diagnosis was finally targeted.
A lesser person than Kate Adamson might be angry and bitter. An accurate diagnosis of stroke within the first hours could have made a tremendous difference in her recovery. The neurological damage might have been less, and the physical rehabilitation much faster.
But Kate is apparently not going to dwell on the past–what might have been. Instead, she’s directing her energies to the present and the future….hers and other survivors of stroke.
Having experienced the sense of isolation that goes with being a stroke victim–long before one becomes a stroke survivor-Kate formed a stroke support group in the South Bay, Back on Track. She’s a member of the Board of the Stroke Association of California. A few weeks ago, she testified before Congress as part of an AHA effort to increase federal funding for heart and stroke research.
(As of 1994, the most recent year for which analysis is available, federal spending on stroke research amounted to $765 per U.S. stroke death. In the same year, cancer research was allotted nearly $3800 in federal funds per cancer death; federal support for AIDS amounted to just over $39,000 per U.S. HIV/ AIDS death. Federal research spending per heart death in the U.S. was just over $1000.)
Some scenes from Kate’s nightmare:
“I spent fifty days in ICU. During those fifty days, I was conscious, could feel everything. I could feel pain. But I could not move any part of my body. I was totally trapped in my body. It was terrifying and I was very frightened. I had come to a point in my life where I could do nothing for myself. At 33, I was wearing a diaper. I was fed by a tube surgically placed in my stomach. I could breathe only by using a tube surgically placed in my throat. I couldn’t speak. I couldn’t drink. I could not move from the rigid, death-like position my body had assumed.”
Asked at the beginning to communicate by blinking, Kate found she couldn’t even control her own blinking.
With breathing tubes inserted into her throat following a tracheotomy, she began producing an overabundance of fluids. A vacuum device was inserted into the “trach” to keep her lungs from filling up. The vacuum had to be used up to four times an hour. With each procedure, she went into convulsions. “The pain,” she says, “was almost unendurable.” The treatments continued for two-months.
Severe headaches and double vision were part of the first phase of recovery, but Kate couldn’t tell anyone about the conditions.
After a couple of weeks, someone brought Kate an alphabet board, which she could use to communicate by blinking “yes” at the next letter in her message. The most frequent message: “Home.”
“For every one of the fifty endless days I was in the hospital, there was a good chance it would be my last,” Kate says. Her condition– and infections relating to the breathing tubes– filled every day with potentially fatal risks.
Some of Kate’s anguish stemmed from separation from her girls. “Stephanie was angry at me for some time. I’d gone away from her and stayed away. And when I came back, I couldn’t be the Mommy I had been. She got over it after I returned home, but for a while it was hard on both of us. Finally came the day when Kate could have a visit from Stephanie, then just three.
“Without warning,” Kate says, “as suddenly as a thunderbolt, her mother had been taken away. She knew something was wrong, but didn’t understand what. She couldn’t fathom why I couldn’t call her. Both girls felt I had abandoned them. Rachel, (then 18 months) took to her bed and wouldn’t get up. Finally, Kate and her family decided that Stephanie must have a chance to see her mother. “I was still in ICU,” Kate recalls. “I had tubes everywhere–three or four IVs, a stomach tube…. When Stephanie saw me she let out the most awful cry. I will hear it until the day I die.” Both Kate and Stephanie began to cry. “I couldn’t bring myself to see her again for weeks after this terrible meeting.”
But, in what is perhaps a tribute to Kate’s active sense of humor and obvious determination to get better–to regain some control over her life, Stephanie’s request from Santa the first Christmas after her mother’s stroke was for a wheelchair “like Mommy’s.” Clearly, Stephanie’s and Rachel’s Mommy is back in their lives.
The time came for transfer from ICU to a hospital with a physical rehab program. Her doctor was afraid, Kate says, “that if I didn’t get moved very soon, I would give up living and just die.” But the new hospital wouldn’t accept Kate. They had seen her earlier and decided that she was, in her words, “hopeless.”
“But,” she says, “they didn’t know what I knew. I knew that I would have a miracle. And I did.” The miracle took the form of change from her condition as a “quad”-a quadriplegic, unable to move any part of her body or arms or legs. “Overnight,” she says, “I was able to move major parts of my right side.” Despite this hopeful sign, the admissions people at the hospital with the rehab unit were hard to convince. “But my family and my doctor got on the phone and yelled and threatened. I guess they were afraid to take a chance on me- in whatever condition I was–to what seemed a certainty of being yelled to death, so they let me transfer. ”
But with the transfer out of ICU to a rehab unit came new nightmares. Kate was still sufficiently paralyzed that she couldn’t press the call button. “I was sure each night I would die in my sleep. I was a total prisoner. No matter what bad thing happened to me, I couldn’t tell anyone.”
But gradually, Kate recalls, she became a person again. The tubes and the IVs were removed. She learned to breathe. She learned to whisper, then–at the urging of the staff–learned to yell. “There was method in their madness,” Kate says. “They were trying to strengthen my vocal chords.” The strategy worked, and soon came the time when “they couldn’t shut me up. It took a very long time, but I was no longer that quiet little thing.”
She learned to swallow, so after weeks on an IV diet, she could eat and drink, working her way from liquid to solid food. The rehabilitation process was slow. Results, although they were satisfying to family and medical staff, were not nearly fast enough for Kate.
For those who haven’t experienced it, “rehab” is not a very evocative word. It may call up images of walkers and canes and basket weaving–a lot of easy- does-it. For stroke survivors, it means a huge, basic, frustrating curriculum. The course on Eating, for example is marked by such sub-courses as Picking Up a Spoon; Putting the Food in Your Mouth Instead of Your Eye; Chewing; and Swallowing. The advanced course in Walking involves under grad classes in Picking Up the Left Foot; Putting the Left Foot Down; Picking Up the Right Foot….. The course on dressing includes such basics as Putting the Left Hand Into a Sleeve and the more advanced Tying Your Shoes.
“Therapy was intense,” Kate says. “It left me exhausted every day.” But she was the perfect patient, willing to do anything just to walk. To take advantage of every precious moment of scheduled rehab time, she began meeting the therapists in the mat room, with its soft floor to cushion falls, rather than wait to be summoned.
“The rehab program was a challenge to me,” Kate recalls. “It forced me continually to set goals for myself. I learned how to cook and how to walk. I learned how to live again, how to get back into the community. I taught myself to write by keeping a journal. My handwriting looked like chicken scratches in the beginning, but soon began to look like my old style. I still sometimes look back at the journal to see how far I’ve come.”
Evidence of the determination with which Kate made that journey is in her proud declaration, I’m no longer a paraplegic; I’m a hemiplegic.”
Kate’s physical rehabilitation appears to have peaked. “I don’t see changes anymore,” she says, “but I won’t give up.”
If the weeks following her stroke were nightmarish, they were also filled with love. Her family spent every night with his wife until she slept. Kate says, “My family has been devoted to getting me the best possible care and has truly been beside me all the way.”
“Life is full of ups and downs,” Kate says. “I have seen down, now I am looking up. I believe it’s how we react to adversity that changes our lives. I am learning to accept that I’ve had a stroke. Acceptance doesn’t do away with the feelings of anger, frustration, and sadness I have, nor does it fully make up for the loss of the use of my left side. But I have much to be thankful for. I can dress. can even tie my shoelaces with one hand. I am a one-handed wonder. Still, it is hard for me, and I think it may always be hard. It comforts me to know that God is only a prayer away, and with God all things, both hard and easy, are possible.”
Channel 7 wants to get a shot of Kate walking across the backyard with the two girls. Kate organizes the girls, explains what the cameraman wants, gets a grip on her four-footed cane. Stephanie, Assistant Director of the scene, tells Rachel, “Remember, we have to walk we can’t run. ” Rachel runs anyway. Stephanie is impatient; sighs the sigh of the long-suffering Assistant Director; and stays by Mommy–faithful, supportive, holding her hand. Kate and Stephanie walk toward the camera – and toward their future. A work in progress.
KATE ADAMSON-DAY ON THE AHA, IN HER COMMENTS BEFORE THE VOLUNTEER VIEWERSHIP
What each and every one of you do for the American Heart Association really counts. Without you, I would not be where I am today. IT does the research. YOU provide help – inform, train, and equip doctors. And,the compassion you show for those stricken with heart disease and stroke helps to make the lives that are saved lives that are truly worth living.
It’s because of the American Heart Association that I was able to make the choice to live and not to die, to feel worthwhile again. To choose between a life of hopelessness and pain or one of meaning and contribution. I had the privilege of representing the American Heart Association before the United States Congress, to seek more funding for stroke and heart research. I was even fortunate enough to visit the White House and discuss issues involving Americans with disabilities with the Presidential staff assigned the task of helping to make and implement the policy regarding health issues. I am keeping my fingers crossed that when I return to Washington I’ll be able to meet with the First Lady. I know that I am not speaking for myself but for thousand of others like me who share a bond of kinship based on suffering and upon triumph. The suffering is something beyond our control, but the triumph and recovery, the reclaiming of lost lives-that is not beyond our control.