Life on Wheels (11 page)

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Authors: Gary Karp

Tags: #Health & Fitness, #Physical Impairments, #Juvenile Nonfiction, #Health & Daily Living, #Medical, #Physical Medicine & Rehabilitation, #Physiology, #Philosophy, #General

BOOK: Life on Wheels
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Whether it was an accident, someone else’s fault, or gang-related—this makes a big difference in how everyone responds. It’s hard enough to feel that you made a stupid mistake but, when someone does something to you and puts you in a chair, that tends to be pretty hard to swallow.
Depression and suicidal feelings are common during acute rehab— although not everyone experiences them. The staff is trained to recognize behavioral signs of these feelings. Depression and suicidal feelings are treatable and generally temporary.
The overall work of rehabilitation depends on commitment—an attitude that promotes full participation and cooperation with the process. In these times of relatively short rehab stays, it is especially important that you not be unnecessarily limited by manageable emotional burdens. The psychologist helps you sort out what drives your behavior in ways that limit you, cause you unhappiness, or compromise the potential you can reach in the rehab process. Types of behavior that could interfere with your ability to gain from rehab include:

 

Passive-aggressive behavior, in which one is indifferent to the value of what is being offered and places responsibility on others’ shoulders
Extreme dependency, in which one fails to participate proactively and surrenders the opportunity to feel personal accomplishment
Severe antisocial behavior, in which one possibly represents a danger to self or others
Rehab doctors and therapists know they must adapt their approach to each person according to how that person is coping. Says Dr. Michael Scott:

 

Everyone copes in a different way. Some people are more energetic, gung-ho and motivated. Some are depressed. Everyone does their best, and we try to motivate them and get them going. Some are able to do a little more early on, and we try to adjust for that. If someone isn’t up for a vigorous weightlifting class or tires out, we try to space things out to accommodate what they can and can’t do.
The fact that someone is depressed or angry while in rehab does not mean he will fail to adapt to disability. Saunders Dorsey was a young attorney in Detroit when an angry client attacked the office with a rifle. Saunders jumped out of the third-story window and became spinalcord injured:

 

I was extraordinarily dependent. I needed 24-hour attention. I wouldn’t do anything. I was virtually helpless. It was obviously more emotional than physical. I was so angry; I laid there for two years and wouldn’t do a thing.
Dorsey has since returned to a thriving law practice, established a successful accessible transportation company after seeing the flaws in the services he was receiving, and is living in a comfortable home with his wife and children.
Violently Acquired Spinal Cord Injury

 

Violently acquired spinal cord injury (VASCI) has been on the rise since the 1990s. The vast majority involve firearms. The incidence, understandably, is higher in urban areas. Automobile crashes remain the number one cause of traumatic spinal cord injury. Violence has been moving into and out of the number two spot in recent years, trading places with falls. The incidence has been growing; between 1973 and 1977, violence accounted for approximately 14% of all spinal cord injuries. Data from the National Spinal Cord Injury Statistical Center (1994) indicate that during the 1973–1978 time period, violence accounted for 13% of new spinal cord cases. By 1994, this figure had increased to 30%, and ethnic minorities accounted for 72% of this group. The greater emphasis is on African American and Latino men.
Statistically, victims of VASCI tend to have fewer financial resources, so VASCI places more demands on the resources and dollars in the system in the form of emergency medical services, rehabilitation, home modification, and so on. They also tend to draw family members away from work— and preciously needed income.
A unique set of issues arise in the context of VASCI. Features unique to people with VASCI include early anger at being a victim and the impulse for revenge, a “macho” type of personality that tends to resist participation in rehabilitation (especially when small white women therapists attempt to direct them), and the challenges of returning to the very environment where they were at risk in the first place.
The Disabling Bullet Project is a program out of the University of Illinois in association with Schwab Rehabilitation Hospital in Chicago, the National Rehabilitation Hospital in Washington DC, and Oak Forest Hospital in Cook County, Illinois, where there are notable populations of patients with VASCI. The Project aids these young men in the process of reintegration into their community through a peer-mentoring strategy. They get the benefits of the experience of other young men who have made the transition back into the community—and achieved a better quality of life. Mentors go through a rigorous training process that starts by taking the young men through their own initial experience with VASCI and reviews topics, including disability awareness and etiquette, the various emotional stages one might go through as they adjust, dynamics particular to their particular minority status, and how to establish an optimal peer-mentor relationship based on trust and strong communication.
Working with a Psychotherapist

 

The rehabilitation period is recognized as an important time for psychological support. Psychotherapists are typically included on the rehab team. Many rehab clients have the opportunity to spend time with a therapist as part of their daily schedule, where they are free to ask questions and explore their feelings confidentially.
Many people who find themselves in rehab will never before have met with a therapist. Those persons might feel as if therapy is being forced on them and is an invasion of privacy. Psychologists expect that some people will be unwilling to participate at first and will have negative ideas about the psychotherapeutic process.
Meeting with a psychologist means revealing intimate facts and exploring deep and often troubling emotions. Although the process can seem threatening at first, the therapist’s job is to be an ally—not a friend, because this is not a personal relationship—who listens openly and explains what he or she has to offer. Psychotherapists can affirm the validity of what you are going through and help you begin adapting.
Jeri Morris, PhD, of the Department of Rehabilitation at Northwestern University Medical School in Chicago, writes:

 

The immediate goal of the psychologist is to encourage a willingness by clients to think about the longterm effects of their injury. The psychologist must get on the side of clients rather than make himself or herself their adversary.
5
Thinking about longterm effects can be especially hard for people with progressive conditions, such as MS or ALS. People with MS fight hard to maintain their health. One of the most difficult moments is when it is time to begin using a wheelchair, as explained by Cynthia Bishop:

 

A lot of people see using the wheelchair as giving up, as giving in to their disease. We hear that over and over, “I’m not giving in to it; I’m not using a wheelchair.” We have to do a lot of talking. “How does it affect your day-to-day life function? If using a wheelchair would make it possible to go to your child’s Little League game, would you rather go or would you rather stay home? How about using the wheelchair at work so you still have the energy to stay up with your family when you get home, as opposed to walking at work and becoming so tired that you just come home and collapse in a heap?”
Generally speaking, it’s not something that people receive warmly. We have to continue the process over several visits. We have to gently bring them to the point where they say, “Okay, I’d like to do that, I think it might be a good idea.”
Most rehab centers emphasize education, offering programs on an array of topics to enhance your sense of control and sense of self. Dr. Michael Scott describes the offerings at Rancho Los Amigos:

 

We have a program that all patients go through called Starting Out class. Every day of the week there’s a different topic. One is called Take Control, basically an assertiveness training class. It’s given by one of our former tetraplegic patients, who does a great job with it. Other topics are Attendant Management, Funding and Resources, and Learning Your Rights, which is an introduction to the ADA. We let them know what the resources are and how to stick up for themselves.
Sexuality

 

The confidential relationship with the psychotherapist is an opportunity to safely discuss this crucial topic. You might be hesitant to bring up questions as personal as what kind of sex life you might be able to look forward to. Dr. Michael Scott describes his approach to helping people ask about sex:

 

Most patients are reluctant to bring up sexuality initially. They’re definitely thinking about it. We use the approach of giving them permission to talk about it. I’ll say, “You’ve had a spinal cord injury, things are different for you now, you probably have some questions, and one thing people usually want to know about is sexuality and sexual function. If you have questions about it, then please let me know.” Usually they’ll say, “Oh yeah, I’ve been wondering about that, doc.”
The priority of sexuality to the person depends on many factors, including the type of disability, age, and sexual experience. Dr. Ed Nieshoff of the Rehabilitation Institute of Michigan, himself a chair user with quadriplegia, talks about younger men with a spinal cord disability:

 

They’re still in the grip of their raging hormones like any teenage guy, and all that energy is hard to redirect. It is very hard—and often angering—for them to have to redefine their sexuality. It adds to the pain. People think that walking again is the most important, but I’d say for most people it’s about number five on the list. For a quad, first of all you want your hands back, second you want to be able to urinate, third you want to control your bowels, and then your sex life, and last of all walking. When you’re nineteen, you’ll take the sex before the walking!
Much of the information offered in rehab is about male sexuality. Since women with disabilities are generally not prevented from having children, the emphasis often falls on male fertility. And since maintaining erection is an issue only for men, this also tends to weigh the discussion in their direction. There is a lot of information about penile implants or injections, and harvesting sperm is now possible.
Yet women also face questions regarding vaginal lubrication, positions, bladder control, and how to attract men in a culture that doesn’t encourage women to be the pursuer. Women need to hear about birth control, pregnancy, and gynecological care. Margaret Nosek of the Baylor College of Medicine Center for Women and Disabilities has been researching sexuality in women with disabilities, and says:

 

I’ve heard from women who said they were put in groups with men and were very uncomfortable with that. They felt it was introduced at a time when they didn’t feel ready to deal with it. It’s just that rehab centers have people for such a short period of time now that they try to cram all this stuff in. Women need more time to adjust.

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