July 12th was the 17th anniversary of my paralyzing spinal cord injury. In remembrance of this day, I’ve compiled a list of the 17 things I’ve learned since my SCI.
1. Rehab was tough, but a distant memory. I went from a healthy, physically fit 17 year-old to paralyzed and flat on my back in an ICU in an instant. Battling back from such a significant injury was very difficult. Every small step throughout the rehab process, from eating for the first time after my neck fusion surgery to sitting in a wheelchair for the first time to wheeling myself around to regaining lost strength and finally becoming independent enough to be sent home were HUGE steps that seemed to take forever in between. But 17 years later I’ve come such a long way and overcome so many other challenges that rehab is but a distant memory. Case in point: now I simply summarize that difficult period of my life by stating that I spent 4.5 months in rehab.
2. Stepping back into the real world took longer than expected. Adjusting to the SCI/wheelchair lifestyle took a while. When I returned home from rehab in November 2006 my new accessible room wasn’t finished yet so I had to share my parent’s bedroom with my mom for 3 months. We didn’t get my van until the following April so I didn’t venture too far from home throughout that period because getting me in and out of the house and in and out of cars could be overbearing at times. Having home health aides come in to help me out every morning was an adjustment period that lasted months. Regaining my independence was a step by step process that took a number of years.
3. Extra appreciation for my family. I could dedicate a whole blog post to this topic. But from the day of my diving accident until today my parents and sister have sacrificed a lot and shown nothing but rock solid, unwavering love and support for me. And I couldn’t love and appreciate them more for it.
4. Learned who my real friends are. Life in general sees friends come and go, but when you have a SCI that happens more drastically. A number of my close friends barely visited me in the hospital, which was very difficult to deal with. Others dismissed me altogether post-SCI. For example, two former good friends made a “pact” not to talk about me or my SCI and that was a crushing discovery. But all of the friends who stuck by me, included me, and have supported me over the years have revealed themselves to be true friends.
5. College was lonely. A story that I’ve only told to only a few people is that every day of my first week of college I left campus in tears because it finally hit me a year post-SCI how different I was and how it might be that way for the rest of my life. I didn’t make a whole lot of college friends outside of the people I knew from high school that went there with me. And I didn’t come close to dating anybody either. In retrospect, I should have hung out on campus or gone to more social events in order to meet more people instead of staying largely secluded at home. But the first few years after an SCI are the hardest lifestyle adjustment years, and for me that occurred smack in the middle of college.
6. Law school was extra hard. Law school is understatedly difficult for everyone, but it was extra hard for me on account of the litany of disability related challenges I faced outside of school. For example, every other morning I did a personal care routine that went at least three hours, so that cut into my study time. If a PCA was late because of traffic, snow, etc., or if I needed some unexpected help with something throughout the day that would cut into my study time as well. Consequently, I went to plenty of classes and exams feeling unprepared. As for exams, while all of my classmates were typing their exams I was still handwriting mine with my adaptive writing device. Writing on a laptop is too difficult for me and trying to manage a keyboard, books, notebooks, and my study outline with such limited desk space in the computer lab wasn’t a good option either. Even so, I only type with one thumb so handwriting was still the faster option. I still feel strongly that my poor handwriting affected my grades. And don’t get me started on parking.
7. Learned to become a better self-advocate and communicator. While I was still living at home I was insulated by my parents, who often were my advocate when it came to van repairs, finances, medical supplies, and a number of other things. When I moved to Minneapolis I had to learn advocate for myself better because I was mostly on my own. Now I’m a strong self-advocate and very effective communicator.
8. Job searching with a disability can be challenging. I essentially covered the bases on this topic in this post so there isn’t a whole lot to add. But with a tough market and a lot of job competition a number of things with my SCI lifestyle made finding a job extra hard. But when I finally did it was awesome.
9. The SCI lifestyle has a lot of hidden challenges. I covered this in detail in this post already, but in short, between PCAs, parking, inaccessibility, stuff going on with my body, etc. I deal with the kinds of frustrating crap every day that most people couldn’t even imagine.
10. SCI aside I can still have fun. This lifestyle has plenty of challenges that limit the kind of fun I can have. However, it hasn’t prevented me from having lots of fun doing lots of fun things regardless-I’ve just had to adapt and make it my own. Wheelchair, or not, you can often find me being the life of the party.
11. Being an uncle with a SCI is tough but special. I detailed this topic in this post a few years ago but now that my nephew is 6 and my niece is 5 it continues to be heartbreaking that I can’t have a normal relationship with them. But what we have is unique and special.
12. Dating with a disability is challenging. I wrote extensively on this topic two years ago. I admit now that my tone was fairly cynical, but that was the viewpoint of a guy who hadn’t had a sniff of a relationship in 12 years, for a variety of reasons. Still, I stand by what I wrote because the bottom line is that on paper I’m a great guy who offers more great things to a relationship than most other guys out there, but many women are wary of the wheelchair. For example, I had one woman send me an email on a dating site telling me that she hadn’t read my profile yet but she was excited by my pictures, our personality comparison, and Q&A answers. Then I didn’t hear from her again. My assumption is that she read the part about me using a wheelchair on my profile and changed her mind. That’s tough. But as my friend says, I just need to be patient and keep crossing them off the list until the right one comes along.
13. Relationship have limitations, but it makes it extra special. That relationships have abnormal limitations is part and parcel of this lifestyle. From only being able to go to certain accessible places, do certain activities, have sleepovers interrupted by my morning PCA showing up, maybe not even be able to get into her home because it’s inaccessible (thereby not experiencing that part of her life together), and so on and so forth it can be tough on both of us at times and takes mutual sacrifice. But when I am with someone who not only accepts me for me, my lifestyle for what it is, embraces each limitation as a unique challenge to overcome together, and ultimately the disability factor disappears then it makes for a very special and rewarding relationship.
14. Breakups are extra hard. As much as a breakup may be the result of things circumstantial to the relationship that went south, it simply not being the right fit, or any run of the mill reason(s) why, it’s hard to not think that that my disability and its limitations weren’t a sizeable, unspoken factor no matter how many reasons aside from it that are given. And watching an ex move on with a buff guy who can she can do limitless, normal things with can be a very bitter pill to swallow.
15. Patience is a virtue. Between dealing with all of the aforementioned issues and countless other things that come along with this lifestyle a great deal of patience is a requisite. And over the years I’ve learned that I am one of the most patient guys on the planet.
16. I’m tougher than I thought. Cut from that same vein, all things considered this lifestyle requires a lot of toughness. But tough times don’t last, tough people do-and I’ve become one of the toughest SOBs out there.
17. Just keep on rolling. Sure that’s a not so clever wheelchair pun, but it best encapsulates what I’ve learned overall in the 17 years since my SCI: that no matter what life has thrown at me, or will throw at me, the key to successfully getting to where I am and where I still want to go in life is to keep on rolling forward.
Photo Source: Moe_