The Electronic Directory for People with Spinal Cord Injury

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Abuse and SCI

By Kathleen Newroe

There's a little bit of truth in every effective lie. That's how he got me, and probably why I let it go on so long. But by saying that, I'm blaming myself. That's what they say you shouldn't do.

If you are a victim of abuse, it's not your fault.

Abuse--mental anguish, psychological injury, unwanted sexual acts, financial exploitation and physical injury--is perpetrated by people looking for ways to feel superior. Abuse is about power and control. And who is more vulnerable than we who are physically dependent, who are often unable to leave our homes or use a telephone without help?

We may be vulnerable, but we don't have to be victims.

The little bit of truth that the aide--let's call him Jerry--used on me was that I need round-the-clock care. I am quadriplegic from multiple sclerosis and I live alone. I'm divorced. My daughter is away at university. I have no family nearby and many of my dear friends have moved away. Jerry knew I needed help.

And he was always available. Regularly working 40 hours a week with me, he still was happy to pick up extra shifts when others couldn't make it. He told me not to worry about the extra hours. He told me he had no family or friends, that he'd always be available to help.

That was why I should have worried. Why would anyone have no relationships or interests outside of work?

I saw the warning signs. I complained to the home health agency that placed the aide with me, but not effectively enough. I accepted unacceptable behavior, rationalizing that his early offenses weren't really that bad. I thought I could handle the situation by myself.

One day Jerry came to me with an idea. He would buy a small trailer and park it in my driveway. He would always be there when others couldn't show up. He could take care of the garden and the fish.

The offer was attractive, and I knew the agency would like it. He already had made scheduling very easy for them. They hardly made an effort to find other workers since Jerry always seemed to be available. Even so, I felt uneasy. I decided to go with my instinct. I declined.

Jerry protested. He was willing to become my primary, if not only, caregiver. Also, hadn't he told me he was a healer? He could heal virtually everyone he worked for, but no one ever wanted that. They were all content with their illnesses. My refusal to let him park a trailer in my driveway was just one more way I was resisting his healing powers.

 

I insisted. Jerry didn't mention the trailer again, but he began to show extreme mood swings. On paydays he was jovial, even elated. As he paid his bills over the next few days, he became morose. He despaired about his age and lack of security, and complained that he was exhausted. How could he continue? Especially vexing for him was the "fact" that he, as a healer, was being ignored.

Long, rambling monologues developed. Sometimes I tried to comment, but this would lead to an argument if Jerry took what I said as a rebuttal.

The home health agency did send a registered nurse around for scheduled supervisory visits. I didn't know how to complain about Jerry. My concerns weren't even on the checklist the overworked nurse brought.

Yes, he sweeps. Yes, he washes the dishes and the clothes. Yes, he empties the indwelling catheter bag. Yes, he puts me on the toilet when I need to have a bowel movement. I told the nurse that, though Jerry was a very good housekeeper, we weren't getting along that well. She said she'd file a complaint for me if I wanted. I declined.

After all, hadn't Jerry said recently that we needed to forgive each other? Even couples married many years don't get along every day, he'd said. In hindsight, I can see that Jerry was encouraging me to think of him as the victim. Turning the tables like this is a common tactic of abusers.

My caseworker visited, and I found myself telling her some of my worries. We decided Jerry should work with me less. Jerry and I had earlier, independently, come to the same conclusion.

Soon after that, while he was helping me with range-of-motion exercises, I questioned his claim that he was a healer. I told him I didn't feel a "healing touch" from him, though I could detect something like that from other aides who were simply concerned with my comfort.

"That's because you're resisting me," he said.

At other times I was made to feel at fault. On night shifts, he made his annoyance obvious when I called for him. I wake up when I'm in pain. If the aide comes quickly, my position can be changed and we can both sleep again.

There's a baby monitor by my bed because I can't speak loudly. The receiver is beside the aide's bed. I'd often have to call for 10 to 20 minutes before Jerry would respond, and when he did arrive he was in a foul mood. It was clear that getting back to sleep was more important to him than making me comfortable.

We discussed his behavior. "My ideal patient," Jerry said, "would be comatose."

 

Jerry began calling me "honey" and "sweetie." I asked him to stop. He did, but said he was just trying to be friendly.

One afternoon, as he transferred me from the bed, he kissed me on the mouth. I pulled away as best I could, and said I never wanted that to happen again. Jerry said nothing but didn't try kissing again.

He did, however, begin checking and adjusting my catheter differently. I wear the catheter tubing taped to my leg. If there is too much slack, I might sit on the tubing or pinch it between my legs. With the flow impeded, the urine backs up into my bladder. When I ask the aides to check, they all simply look under my skirt and move my leg or the catheter. Jerry had done this many times, but one day he ran his hand very slowly up my thigh instead.

I was so shocked, I didn't know what to say. So I said nothing. The next time it happened was shortly after an argument. There was a tension in the air, and again I said nothing. I didn't want to say, "Don't touch me like that," for fear he'd overreact, or even jerk out the catheter.

The next time Jerry checked the catheter, his stroke included more than my thigh. I told him not to do that. He was looking me straight in the eye, but he didn't stop and he didn't say a word.

It all culminated one Friday afternoon, when he said what a beautiful body I have and explicitly declared what he wanted to do to it.

"I don't want to hear you say anything like that!" I said.

"How can you know how I feel if I don't tell you?" he asked innocently.

"Now I know," I said. "You don't need to say any more."

I asked him to set me up at the computer. He did, and I stayed there, with him out of the room, until the shift changed and the night aide replaced him.

Jerry wasn't working that weekend so I put the incident out of my mind as best I could. But I dreaded his return on Monday. I rationalized that I had handled it so far, and that he would soon be gone.

One of the nurses scheduled to work on Sunday had also worked Friday morning. She commented on what a good morning we'd had Friday. Before I knew it, I was in tears, telling her that the rest of the day had not gone so well. She asked me why not.

In the end, I accepted her help. Because she listened actively--asking progressively more personal questions and repeating my answers back to me--she helped me as only a professional can. She said, "That's it then. He will never come into this house again. You never have to see him again."

Then she got on the phone, notifying the agency and setting up substitutes for Jerry's upcoming shifts. She explained that she would write an incident report and notify the authorities as required by our state law. For me, the ordeal was finally over.

And what did I learn? That whatever someone does to you that makes you uncomfortable or upset is wrong, even if it involves family members or caregivers. It also affects your health. In the end, it is up to you to do something about it. Regardless of what others might think, you must believe in yourself and your perception of the problem. You must have an active belief in your own self-worth. You don't have to be a victim.

You don't deserve to be treated badly. You do deserve to be helped. You do have to tell someone.

Kathleen Newroe writes poetry, essays and a regular column for The Santa Fe New Mexican.

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