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Stroke is journey of fear, pain, laughter

Published Sep. 2, 2005

The terror began at 6 p.m. April 24. In part, it will end today, Halloween. The story, however, is scary and ongoing.

The unseen hand that guided me home early the evening of April 24 had to belong to a force for good. If I had stayed at work even 30 minutes longer, my husband might be dead or in worse condition than he is now.

I usually work until about 6 p.m. I was in Crystal River that day, and the drive to Inverness takes 25 or 30 minutes, depending on traffic. Something made me say, "The heck with it. I'm going home." I left about 5:15.

Arriving home about 5:45, I said "hello" and headed for the other room to change clothes and get comfortable before making supper. When I walked back into the living room a few minutes later, life, as I had come to know it, was changed forever.

My husband was half off the couch, back arched, trying to stand up and unable to do anything but babble. He had lost control of his bodily functions and the look of terror in his eyes mirrored mine. He was having a stroke.

At 78, Ernie was always the healthy one. I take at least three prescription drugs. He took an aspirin and multivitamin daily. He did yardwork, sometimes jogged or rode his bike, and would do sit-ups, much to the amusement of our cats. I worked mentally, but avoided anything really physically demanding.

He ate fruits and vegetables, cut fat off his meat, skinned the chicken before cooking, and in general ate right. I like fruit _ and a lot of candy, chips, sour cream, crisp chicken skin and junk food.

According to all the studies, that stroke should have happened to me. Instead, Ernie ended up in the ambulance while I followed behind.

Over the intervening weeks, which turned into months, I've learned a lot about strokes. And about the lack of a central source where I could find guidance in dealing with numerous agencies that, by necessity, have become involved in our lives.

Why did this stroke happen? Nobody seems to know. After all the tests, the doctors can't say. He can't say. I've searched the Internet for answers and only come away more confused . . . and more savvy. Confused about the cause. Savvy about his needs, now and in the future. But still searching for answers to my questions.

Ernie was in the hospital emergency room within an hour of the stroke's onset. At first he was talking and moving, and I hoped he'd recover quickly. As the evening progressed I saw signs of the stroke worsening.

Ernie lost use of his right side. He still talked, but with the slur that comes from flaccid muscles and tongue. The four days he was in the hospital were a study in degeneration. He went from a man of strength to a roly-poly doll who couldn't sit upright without two people holding him.

For more than 16 years, since he retired at 62, Ernie had assumed the responsibilities around the house. He made coffee in the morning, cooked supper most evenings, cleaned the house while I worked and did most of the maintenance both in the house and the yard. Yes, I was spoiled.

Not anymore. I couldn't even make a cup of coffee that was drinkable. Cooking for one person was impossible. I lost 14 pounds that first month.

But during the four days in Citrus Memorial Hospital and even after he was transferred to Citrus Health and Rehabilitation in Inverness, I made him talk, to keep his mind and mouth active. I could do little for his body. I made him tell me, step by step, his morning routine, from waking to making breakfast, to seeing me out the door and off to work.

I asked him about other things, too. It wasn't unusual for me to visit him and ask where he had put the vacuum cleaner bags, or how he washed the comforter. I knew some things, but needed him to remember those things and to feel needed. I wanted him to have a reason to go on _ to live.

Several years ago he had a transient ischemic attack, a mini-stroke. He was hospitalized for about four days. Again, no answers, but he came home just fine. After taking it easy for a week or so, he was off and running again. Literally.

But he had been brought to terms with his mortality and he told me, "I don't want to live if I have a stroke. I don't want to be an invalid."

I wasn't about to let him give up. Drawing on my training as a rape crisis counselor in Ohio, I reminded him that he wasn't a victim of the stroke, but a survivor. And I expected him to act like one.

I was rewarded a few weeks ago when he told a visitor, "I still have a long time to live."

Ernie still hasn't totally recovered the use of his right side. He needs assistance to walk, but is using a walker. When he tires, he uses a wheelchair, but uses his legs to get himself around.

The folks at Citrus Health and Rehab have been a large part of the strides he has made. And he has become a part of their lives, making them laugh until tears flowed, giving many of them nicknames, earning their respect and respecting them _ although, given his irreverent sense of humor, it doesn't always seem that way, I'm sure.

Social Services director Carl Canale has become a friend. He answers my questions, looks into things that I know nothing about, makes suggestions which I may not always follow and has even given Ernie a verbal kick in the pants when he began taking me for granted and being nasty. It worked.

The nursing assistants, nurses and therapists have cleaned up after him, helped him with daily living and made him figuratively stand on his feet. They threatened, cajoled and worked magic.

Which makes me afraid this Halloween. I don't know if I have the magic to take Ernie to the next level. But I'm going to say a prayer, put him in the car and take him home. He's ready, and so am I.

Maybe that same hand that guided me home that night in April can work its spell and guide us both home to better times.