When you suddenly find yourself with a disability, you live with a painful and an uncomfortable situation. And when the disability impairs your personal autonomy, the discomfort is not only of the person directly affected, but also of your loved ones. Everything is distorted and you must adapt to the new situation if you want to survive. So far the diagnosis of a spinal injury is this: the sentence to life in a wheelchair that, at best, you can push it with your own hands; at worst, with a mechanical ventilator attached behind it. When you hear the phrase “you can not walk anymore,” the sky falls. At least that’s what I often read or heard by people who have lost the use of their legs. In a condition of paraplegia (paralysis of the lower limbs) you must rebuild your life according to the new unexpected situation. You have to get removed any obstacles, but often this is not enough, you must do further work to build ramps, elevators, expand doors, modify bathrooms… and sometimes even that is not enough, you are forced to move. Also do not forget those who are forced to resort to care homes, because they have neither home nor family. Those who had already a job are lucky if they can continue with the same occupation, or at least to move to office duties. Among the lucky ones there are those who can find a job for the first time. So you try in every way to live at the best of your possibilities, through highs and lows, depriving yourselves of many things you did before and adding others that you do not want.
What happens when you also lose the use of your arms?
The only thing shared by a condition of paraplegia and quadriplegia (paralysis of all four limbs) is the reaction to the communication of the diagnosis. Everything that follows is certainly amplified to the umpteenth degree… and I’m referring only to the problems related to the injury. In addition to these problems, the quadriplegics must also suffer the total dependence on others to carry out all the activities of daily living. A situation that puts a strain on the person assisted and who offers his/her assistance, particularly if the disability is permanent. The first people to take care of are the family members, but obviously it is a situation that can not last long, and it is right and proper that way… for both the disabled person and his/her loved ones. The personal assistant (carer) is someone who takes care of quadriplegics. In most cases, it is natural that a family member takes care of a child, a mother, a father, etc. In carrying out delicate actions you need both sensitivity and some coolness; but most of all, it’s needed mutual respect. To put it bluntly, no one likes to get his/her physiological daily actions made by someone else… and who says the opposite, consciously lies. The relationship of trust and confidence that there is with a family member makes this discomfort less unbearable; and it is unlikely to happen the same with a professional assistant, even though they are professional and trained. For a person relying on help with everything it is very difficult to find someone who meets the requirements you need. Even worse, searching for a carer can take too long, making the disabled person in a state of anxiety. From here it takes a little to move to frustration, thinking about when the time comes and a stranger has to be part of your life… (and not for sentimental reasons). Disabled people with the use of arms and hands, albeit on a damn wheelchair, don’t need to think about assistance. They don’t have to think about what to do if they remain alone… their mind never crossed by the thought if it might be the best to be gone before their loved ones. While they’re getting up by themselves, going to the bathroom, doing their own things, getting ready to go out to work (maybe angry, because they wanted to stay in bed), running an errand for their mother, going out with a friend, and so on. They will think about how happy they were when they used to go the beach and walk along the shore, used to go dancing on Saturday night, had no problems of infections, their whole body was sensitive, and so on. They don’t think they are alone in the bathroom, in the shower, at the wheel of a car, and don’t need anyone to do those things for them. Maybe sometimes they think about that… and they have thanks that the worst (quadriplegia) didn’t happen to them. Conclusion: SCI is an ugly beast that may cause serious and permanent disabilities. The worst is to suffer an injury in the seven cervical vertebrae (in the neck), and the worst of the worst in the first three. The research is still in the experimental stage. “We do not know the solution yet, but the road we have taken is the right one.” More or less, this is the answer of scientists and researchers to the question “When there will be a cure?”. And while they continue on the right path making small steps, the people involved wait for… some are carefree, some less, some not at all. In the meantime, though, you can choose to fight to highlight on the URGENCY of finding soon a cure for all types and levels of injuries, bringing to public attention the true reality of what a spinal cord injury involves, so that the voices encouraging scientific research to hurry in finding a cure, are much more and make more noise than cheers of admiration to those who claim not to be disabled, but stay just seated.
Cure Girl Barbara