Part 3 of 3
Thomas Cloyd writes on his “shockingly stereotypical bachelor life” with quadriplegia in part 1 and part 2. Here, Thomas shares four lessons learned that he wants to pass forward to people facing spinal cord injuries (SCI).
1. Make New Friends - Find others with SCI
Starting a life with this injury is terrifying, but you are not the 1st person to do so. I originally did not want to hang out with other people in chairs, I was embarrassed. After joining a wheelchair rugby team, I have learned more and become more independent than I ever could have from a lifetime of physical or occupational therapy. Meeting other quads helped me switch from a power to a manual wheelchair, move from my parents’ house to an aggressively trendy apartment, and travel solo as I did before my injury (I won $220 in Vegas last weekend). Experience is priceless, reach out and listen to those who have been through it to get a jump start on getting your life back. Sports, nonprofits, volunteering, advocacy work, there are opportunities out there, you just need to find them. A great way to start is through the websites below, but just Google stuff like crazy and start communicating. SCI is a small community and everybody wants to help, contact one person and you can likely contact most.
2. Good help, good life - If you need assistance, put in effort to find quality people
For many with SCI some amount of assistance is a necessity. Friends and family can help, but that is not their job. Most insurance will cover some amount of PCA (personal care assistance) hours, but make sure to find someone who will care about you as a person, not just as a paycheck. I relied on PCAs for a long time, when they didn’t show it shattered my day (and usually that of one of my parents). PCA firms hire and train workers, but can still be unreliable. I have hired help through such firms and craigslist. I have found the best PCAs through face-to-face interviews and paying above average salary. Finding and keeping good help is a much larger issue than this single bullet point, just know it is worth the extra effort to vet a quality employee than accept the first candidate a PCA company sends you.
3. You the boss - stand up for yourself (metaphorically that is)
There are countless resources and programs designed to help those with a SCI. Be it state and federal financial assistance, student loan forgiveness, or a local group buying you an adaptive car; there are hundreds of issues to manage. The hospital will provide you a social worker or care manager and these people are capable, but don’t rely on them explicitly. They may not know about a research study for which you are a perfect candidate or fully understand the long-term disability benefit you hold with your employer. You control your destiny. It is not easy, in the beginning it can be a full-time job, but you know your situation best. There will be people to help you along the way, but always remember you are still responsible for your life.
4. Luck favors the well prepared - stay hopeful and healthy
The current state of research to restore function in people with SCI is very exciting. Though a “cure” has been touted for decades, there is tangible evidence today that people with SCI can regain some amount of function that they have lost. But no trial or intervention will help a poorly maintained body. Fitness is critical and possible for all levels of function, take care of yourself. There are no guarantees, and the timeline is hazy, but there is reason to hope. I accept and live my life while maintaining hope and effort to bring this possibility to all of our lives. To learn more about fitness and restoring function go to www.gusu2cure.org.
I hope some of this is helpful, if anyone has questions or wants more specifics please contact me. I will try to point you in the right direction. If you or someone you know suffered a spinal cord injury I am truly sorry, hopefully they are doing okay and can look to the future with a smile. I usually can, but not always.