I have been in rehab for a spinal cord injury for a while now, and am preparing to be discharged. To say I am a nervous is an understatement. What was the best advice you received before being discharged from rehab?
The response from the SCI community to this question was overwhelming — so much advice to summarize in a few words. The feedback fell into 4 main categories: practical, advocacy, health and emotional. The practical information included stay active, set goals, be patient. Advocacy and health advice focused on learning as much as you can in rehab and speaking up for yourself. Directing your own care, autonomic dysreflexia, avoiding pressure sores/good skin care and continued exercise were of utmost importance. By far most people weighed in with emotional advice. Most importantly, knowing that going home was going to be difficult but keep on fighting. It does get easier as you adapt. Below are a few of the comments sent in by the peer alumni.
- “In retrospect, I think the best advice I received during rehab was from one of the peers that visited. In his words, ‘The first 2 years after your accident will be a complete mind@#$%.’ I and the other peers kinda laughed about it then. After I got home, I realized what he meant and how true it was. It’s important to stay positive during the 2 years when you come to a realization that life is not the same as it was before your accident. Was much more true than I could imagine.”
- “Live your life. Don’t let the wheelchair stop the person you were before you sat in it.”
- “Become a part of some type of social group that is made up of SCI participants. It will help you learn the most about the new life you’re about to enter”
- “Drive your power wheelchair with your non-dominant hand in order to leave your dominant hand useful for other things.”
- “BE YOUR OWN ADVOCATE. I didn’t understand the severity of that statement until I was back into the community. You kinda ignore the simple things they teach you in rehab because you’re use to living independently and what they are teaching has always been a part of your daily life. You don’t clearly understand it until you’re thrown in it.”
- “To check the skin everyday — and if the skin is red, press on the spot to see if it blanches. If not, stay off of it until it does. I ignored this advice twice in my 28 years in a chair — to my detriment.”
- “To be the expert on autonomic dysreflexia as certain professionals at certain facilities won’t have a clue.”
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