This post was done in conjunction with an interview with a spinal cord injury peer support worker Jay MacIntosh – a victim of a hit and run in 2004. Jay was left paralyzed and still to this day, volunteers his time as a peer support worker who helps mentor tp those who are newly injured.
While the return home is usually eagerly anticipated through most of their hospitalization, as the date nears, beleive it or not, some spinal cord injury victims begin to almost dread it: Discharge means facing all the unknowns awaiting them in the “real world.” The physical return home is one thing; the psychological adjustment to life as someone one with a spinal cord injury is another. Before this point, you will be working with occupational therapy workers in and out of the Hamilton Regional Rehab Centre hospital setting.
Your occupational therapists will visit your home and make various recommendations on how to improve the accessibility of your residence. Partners, parents, friends or loved ones complete training in how to help the newly paralyzed individual get in and out of the car, bed, or shower. Despite this preparation, spinal cord injury victims who are about to go home suddenly start to ask lots of new questions. They frequently became quite anxious and often seem to lose much of the confidence they have worked so hard to gain during their long weeks or months in rehab. Just as so many people do at the onset of hospitalization, they often begin to wonder again if they can make it in the real world.
The good new is that often times, prior to going home, spinal cord injury victims will take overnight trips home before discharge to practice what they’ve learned in rehab and use these opportunities to try out some of their newly learned techniques for eating, transferring in and out of their wheelchairs, and going to bed in their own home setting, as well as socializing with their families and friends away from the hospital. By taking this first “step,” they were able to start getting a feel for whether they were indeed ready for discharge.
Although most people with a spinal cord injury experience a period of excitement when they first return home, which, as Jay tell us, is often followed by a repeat of the same emotions previously faced in the early days of rehab: sadness, resentment, anger, frustration, and anxiety. Even with all the preparation and therapies they have been through, the reality of no longer being able to do what they once could in this familiar setting can no doubt be hard to handle. More specifically, when in the hospital, using a sliding board to get from the bed to a wheelchair or to the toilet, or grabbing a “reacher” (a piece of adaptive equipment) to get a box of cereal from the cupboard shelf, may not be a big deal since in rehab everyone else is also using them. But now, needing to have this special equipment in one’s home may be a frustrating everyday reminder minder about what has been lost. The stairs one used to run up two at a time have become a steep, unattainable barrier, and the ramps that lie over them are yet another sign that things have changed. When the injured person with a spinal cord injury watches his or her family or friends seemingly breeze through their day-to-day routines without need for adaptations, frustrations may only intensify.
Jay also tells us that as a part of his peer mentoring, he always tries to explain to the newly injured that adjusting to your return home after suffering from a spinal cord injury means not only dealing with the spinal cord injury itself but also confronting the way you view the world and your place in it. It is impossible to maintain a positive attitude all the time, but learning how to adapt to one’s “new normal” and push aside feelings of disapproavel that may creep in is an important factor in post-injury adjustment. Sometimes just being able to experience the intensity of negative emotions is enough to allow someone to move forward and find solutions. The support of family and friends can be invaluable, valuable, but in the end the strategies individuals create for themselves will determine how well they are able to integrate back into society, as well as handle the challenges-and the looks-that are likely to come their way in school, the workplace, or wherever else they venture.
In our discussions about peer mentoring, Jay also mentioned something important – a person’s long-term adjustment to spinal cord injury, like his or her initial reaction to it, is an individualized process. We all handle things differently. Whereas some people may readily adapt to life with disability, others have more difficulty coping – or even a brutal time coping. Although the physical changes resulting from paralysis should never be minimized, in my experience some people are actually less devastated than others when they lose their ability to walk. People who find personal fulfillment through matters of the mind and intellect-such as literature and art-may find it easier to cope with a life of physical limitations. Individuals whose personal identity stems from their athleticism or physical abilities, in contrast, may find the losses of paralysis much more difficult to manage. At the same time, Jay advises that in his experience, he has found that physically oriented people are often the ones who challenge themselves to master adapted recreational activities like wheelchair sports.
In Jay’s experience, people with spinal cord injuries continue to demonstrate, time and again, that the extent of their paralysis is not a major determinant of how well they will be able to adjust to life with disability. For example, many spinal cord injury victims with tetraplegia, some of whom have no movement at all in their arms or legs, have been able to resume sume work or school (with the appropriate assistance), continue meaningful relationships while developing new ones, and maintain a high quality of life, just like people with paraplegia who have full use of their arms. So many peers that he has seen have shown that what matters most for a successful adjustment to spinal cord injury is what they bring to their injury more than the paralysis itself. In other words, a person’s character, life history, intellectual and emotional resources, sources, and degree of family and social support make the biggest gest impact on his or her ability to live a meaningful and happy life with paralysis.
Matt Lalande has been represnting spinal cord injury victims all over Canada, Ontario and in the Hamilton area since 2003. If you or your loved one has suffered a spinal cord injury and need to talk, call us Nationwide at 1-844-LALANDE or local in the Hamilton / GTA at 905-333-8888 and we would be happy to assist you and answer any spinal cord injury questions you may have. Talking to us is always free.
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