Anna has a lot to say about the dynamics of decision-making at several points in the recovery process. The adjustment that comes with time corresponds, in her experience, with having more understanding of your own needs knowing how to exercise the options that are open to you.
Anna points out that a lot depends on the people who are around you at any given moment of the post-injury process and on who you are as an individual.
Anna discovered the world of assistive technology through clinicians, vendors and her own research efforts. At discharge from the rehab centre she had a power chair, a manual chair and an adapted phone. She bought a computer recently, which she is learning to use. She uses her power chair and telephone all the time and her manual chair only occasionally. She does not use an environmental control unit. All of her devices were paid for with money from government agencies, family, friends and her personal savings.
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“Stay near the things that you love … even if you can’t experience them in the same way physically … because those are the things that don’t change…”
On using a power chair: “When I had made the jump to … wanting to get around, it [learning to push a manual] did not seem important enough to take all my energy.”
On being in control now versus while in rehab: “I’m not a patient there anymore. They [rehab staff] no longer have an agenda of filling out prescriptions and getting me on my way. I understand my choices much better now.”
For six months after her injury, Anna resisted the whole idea of assistive devices. She had been exposed to all kinds of technical aids through the doctors, nurses and therapists involved in her care during her initial three-month stay in acute care in New Mexico, but she was not ready to make a connection with any of it.
At the rehab centre in Canada she was introduced to the philosophy of “learn to live in a chair” through contact with her roommate, who had a very high-level injury and was very isolated and dependent as a result. Anna was terrified by this encounter and felt that it set her back. As she says, “The adaptive aids, the whole language of spinal cord injury makes absolutely no sense until you choose to put yourself into that school as a pupil of it…” Her brother’s commitment and lack of fear, as well as her doctor, family and friends’ support kept her going, but she admits: “I was so emotionally, psychologically, spiritually devastated that … I did not identify with any of that stuff. And I didn’t care about it … I didn’t want to … make the jump to that stuff. I didn’t want to need it.” A conversation with a friend in a chair stands out in her mind as the moment she began to accept everything—somehow in telling her his story, “He talked me into feeling better.” From that point on, Anna recalls, she “started being able to do stuff.”
Anna’s first positive association with assistive technology was with her manual chair. It was a means of escape from the hospital; her friends could take her out because it was easy to stow the chair in a car and none of them had a van. Pushing a manual chair would also make her more physically fit. Initially, Anna wanted to learn to use a manual and avoid using a power chair altogether. To her, a power chair represented “a higher level of injury and less independence,” until she realized that it saved her a lot of energy. The world outside the rehab hospital was actually a lot more accessible in a power chair. “When I had made the jump to … wanting to get around, it [learning to push a manual] did not seem important enough to take all my energy.”
When she first got a power chair, however, “It sat in the corner of my room for weeks. You know, hissing at me. And it was the most fearsome image to me.” Nowadays, however, she spends most of her time in her power chair, which she does know how to break down and put in a car. She uses her manual only when travelling or when she cannot find out how accessible a place is ahead of time. The decision to go for a particular make of wheelchair was based on her impression of the wheelchair technician who was going to be working on it. He was very pleasant, knowledgeable and professional and spoke to her in a way that she could understand—he calmed her fears. Anna’s therapist didn’t push her before she was ready either, but Anna recalls feeling overwhelmed by the bad timing of it all—being faced with the huge costs involved and not yet knowing what her needs were. She felt she was making decisions based on what other people thought, rather than being taught to weigh her options and understand her choices, and it drove her crazy. “You’re basically returned to childhood with an adult mentality and trying to resolve those bipolar situations was brutal.”
The pressure to make decisions about the wheelchair and everything else intensified in the weeks before she left the rehab centre. “They have to make prescriptions and you have to make decisions in order for them to make prescriptions … it’s completely overwhelming and it’s totally unnecessary.” The wheelchair did not actually arrive from the manufacturer until Anna had been discharged, but at that point she could not get the service she needed from the rehab centre to have the chair adjusted to fit her properly. “Because the chair came in after I left … I couldn’t get a therapist to listen to me.” Recently, Anna returned to the seating clinic for a reassessment because both her needs and her body have changed. This time her experience was better because she wasn’t a patient, and there wasn’t the same pressure around the rehab staff’s “agenda of filling out prescriptions and getting [people] on their way.” Also, her knowledge had increased. “I mean I’ve done the research. I now speak the language of spinal cord injury … I wasn’t even ready to discuss studying that language for a good eight months after my injury.”
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Anna’s experience around buying her computer and speech recognition system was far more positive. She bought her computer a year and a half after her discharge from the rehab centre because she needed to write. By that time, Anna was no longer feeling as overwhelmed by her injury and wasn’t distracted by having to acquire other things as well. She “wasn’t in the heat of it” anymore. Anna felt in control of her own decisions this time.
Anna also credits the helpful attitude of certain staff at the rehabilitation centre who were involved in arranging for a computer and the funding for it. They helped her see that she had real options and let her discover what was most valuable and important for her. They were able to convince Anna that the computer wasn’t as scary as she thought. They showed her how to put the headset on and led her through the basics step-by-step. Within a few hours of that initial introduction, Anna had overcome her fear and began to enjoy what she could do with the help of this technology.
Even so, it took her a while to begin to use her computer and speech recognition system; they sat in the box for a few weeks. Her fear stemmed from two concerns: “One—here’s a piece of equipment that is all about my injury … it’s from planet quad as we say.… The second feeling was … am I going to be able to manage this? Do I have enough energy to learn a whole new sort of thing?”
In fact, the computer has restored a sense of control over writing that Anna felt she had lost when she could no longer use her hands after her injury. It allows her to write—an activity that has always been tremendously important for her, both personally and professionally. The technology allows her to function independently, to express herself and to communicate with others. Ultimately, Anna expects that the computer will get her one step closer to work, “the last frontier in my rehab.”
Anna did not have insurance and could not afford all the aids that her therapists thought she might need. She remarks on the awful irony of being in a situation where her earning power is less than it has ever been while her needs are three times what they were. The rehab professionals showed her many things that they thought she would need, but the price tag rendered them impossible, and it confused her further. She attributes this to a combination of factors, one being that therapists are not close enough to the actual experience of spinal cord injury itself to understand things from the patient’s point of view. And there is no way they can be. Second, the rehab setting is worlds away
away from conditions of everyday life and nobody knows what they really need until they have had time to adjust to life beyond the hospital. “I don’t think I know anybody post rehab who doesn’t have a big cupboard full of junk that someone thought they would need.” Anna advises people in rehab to “hook up with somebody … who can explain the gap between [rehab] and the rest of the world to you in such a way that you can understand it.”
Anna still resists the idea of having to buy assistive devices unless she really needs them, because she feels that the prices are too high and insurance driven. Instead, she solves access problems as they come up, often without having to resort to expensive solutions. An example of this straightforward approach is the way she solved the problem of being unable to adjust her thermostat. She simply attached a tongue depressor to it. Today, the high cost of assistive devices still bewilders Anna, but she does not worry so much about whether she will be able to get what she needs. Her philosophy is that, “I have always had everything I needed. Just because I have a spinal cord injury doesn’t mean I’m going to start wanting some stuff.”
Anna is not concerned with independence in physical terms—it isn’t a priority. She does require help putting on her wireless headset microphone and turning on the receiver. Once on, however, Anna can wear the headset all day and “use the computer when I want to and not when I don’t want to.” She does not have an environmental control unit, nor does she feel she needs one. In fact she does not have very many adaptive aids at all. “I do as much as I can and then I accept help too, rather than evacuate my energy budget.” The way she sees it, “I am more interested in what I can still accomplish with my life … than I am in fighting constantly for what the rehab centre calls independence. I’ve been independent most of my life; it’s a state of mind not of body. It’s okay to need help with physical things now.”
In closing, Anna’s advice to anyone facing recovery and rehabilitation from spinal cord injury is to “stay near the things that you love … even if you can’t experience them the way you did before … because those are the things that don’t change.” When confronted with having to make decisions about adaptive equipment, she says, “Take the minimum that you need, avoid getting overwhelmed, and go back for more when you need to … unless you’re dealing with an insurance company, in which case the approach has to be totally different. Talk to somebody who has got some experience in the chair.” Lastly, she says, “Listen to everyone, able-bodied or not. Are they good teachers, good peers for you? Some are, some aren’t. Allow yourself the time and space, the peace of mind and body to make decisions.”
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