This is a very tricky topic of conversation to navigate as friends, family and caregivers read what I write, but I will give it a go as to my personal experience over the last seven years. Naturally, after a major traumatic incident, whether you are the one injured or a friend/family of an injured one, people can react quite differently to a disaster.
With respect to loved ones and friends, they can either be super supportive or seem to do a 180° turn around to leave you seemingly high and dry. A traumatic event can really show you who your friends are, but at the same time can create quite a lot of animosity, and frustration for many that are injured. Often times you can feel abandoned or forgotten about. I think what is not discussed is how a traumatic event can also affect those around you. Some people can handle it with elegance and grace, and some people can feel just as traumatized as a person who is injured. Feelings can get hurt, emotions can run high, and relationships can be pushed to the brink.
To add to that, when you break your neck it can seem as though people are abandoning you after the initial acute phase of the injury. While there are definitely some friends and family out there who are not up for the task of handling life after disability, I don’t think it should be discounted that friends and family also have lives, get married, fall in love, start their own families, etc. This can be challenging because, from my personal experience, it can feel like everyone else is moving on and you are stuck in the same spot … sometimes for years on end.
I am the type of person who is organizer. I usually always call friends to hang out, and while we have a great time when we do so, the sentiment is not always reciprocated. Sometimes you want people to reach out to you. Sure this can hurt and feel lonely, but, as mentioned above, people also have their own lives. Spinal cord injury can take up your entire universe and it is only natural to want to have people around you at all time to share the challenges with you. I think if you have even two people in your life who are there for you then you are doing pretty well regardless of a disability.
Sisterly Love is Forever
However, I suppose from the flip side it can be challenging because friends and loved ones may feel badly for not always inviting you out because there are many things that are not handicap accessible. When you have a traumatic event of any kind your schedule becomes much more limited with respect to doctors’ appointments, care giving issues, medical issues, pain issues, etc. There are days when I struggle to keep my head above water because I am just trying to manage everyone’s emotions in my household. I find I can’t just hang out when I want to and I have to wonder whether this hinders some people from reaching out to me because it doesn’t work with their life either.
There are always exceptions to the rule of course because some folks can just utterly abandon you because they cannot handle your injury for whatever reason, your injury may impede upon their lifestyle, they miss the old “you, the list can go on!
The only thing that works for me is persistence … I seem to just keep pushing forward and trying to get people to hang out whenever they can even if I have to schedule far in advance. I do so tremendously miss the spontaneity of being able to just pick up and grab a quick bite at the end of the day of with a friend. I grieved for many years with not being able to do what I wanted and go where I wanted … Over time I realized that you just can’t change a person. They are who they are just as you are who you are, and you can either accept it, move on or find new friends.
This, of course, can be immensely challenging with a disability because of transportation, schedules of caregivers, how we are going to go to the bathroom if we are out with a friend and they don’t how to help you, etc. I’ve fortunately been blessed with a very supportive family and good friends although many of them are spread out throughout the world. However, there are people my life who I wish would reach out to me, but I’ve also had a breaking point with some of these folks where, even, I have given up.
I’m in an interesting situation at the moment as well… I’m trying to expand the circle of people I know where I presently live because when I first moved here two years ago I had medical disaster upon medical disaster. I didn’t have the freedom to go out let alone find new and interesting people. As I move forward I realize the difficulty in finding a circle of people when you are in your 30’s … So many people already have their own lives and families set in stone. It is easy to angry or feel hurt sometimes, but this only makes my personal pain levels go up. I simply can’t afford that.
Life with a disability is definitely more complicated and many will never understand what we go through. I do think one huge advantage to social media is you can connect with other disabled folks through Facebook, Snapchat, etc. in order to share in similar challenges. As for me, I find, and I probably don’t recommend this for most people, but talking to strangers is so wonderfully amusing for me because I never know who I’m going to meet and how they will affect my life!