In part 1 of this 3 part post, I asked you to imagine what it would be like to be me: to feel the chronic pain, to visualize how my daily routine is affected, and to know exactly what this relatively unknown neurological movement disorder really is. But we could put ourselves in anyone’s shoes who has a chronic or terminal illness and think about what we would want and need if that is what we were experiencing.
There is no scale of one chronic illness being better or worse than another. If you have chronic pain, it affects you, and you don’t need to tell others it’s not as bad as theirs. Share how your life has been changed because the fact is our society needs to learn about all the different ways chronic pain affects one’s life. Many people don’t believe. This was certainly my experience when I sued a girl in her late teens who ran a stop sign and hit my mom’s car twelve years ago (and if you’re wondering why I would sue a teenage girl’s insurance company, her first words to her mom were “I’ve had another accident.”). As the passenger, my neck and back were going to need a lot of physical therapy to heal. And of course, the only two people who were very familiar with chronic pain because of their jobs were dismissed by the other attorney. Can you guess what the verdict was? It wasn’t in my favor because the jury didn’t believe chronic pain existed. To add insult to injury, my mom was told she was also at fault just for being in a car and driving down the road. What did it teach the young woman who didn’t have any consequences? It’s okay to not obey the laws because you’ll get away with it? That’s not right, and the more we can teach others about what we experience, the more educated people will be who may one day decide your fate: whether it be applying for Social Security Disability, negotiating with an insurance company about an accident, or any other possibility. Our culture needs to know about the existence of a pain that is too often denied because of its invisibility. (By the way, if you’re wondering if this accident had anything to do with my dystonia diagnosis, my doctors assured me it didn’t.)
So I got a little off track, but I truly believe our answer to getting the help I need lies in the educating of others. This includes putting ourselves out there and asking for help. That isn’t easy because we live in a society where that is the exception, not the rule. Exactly why is it so hard for us to ask for help? Just last week, I was very sad because I had asked for help multiple times from a group of people I thought I had bonded with throughout the course of studying a spiritual course. Each time I asked, I was told no one could help me with rides to get there. So when it came time to find a new location for our meetings, I hoped my inability to drive that far would be taken into consideration since no one was willing or able to help with rides. Unfortunately, the location chosen was just as far as the other one. Throughout this course, we’d been told to speak our truth. So I did! I reiterated my need for help and asked to meet somewhere more central to EVERYONE, given that our group was fairly small by this time. Not one of the replies even recognized the fact that they knew I needed help and would try to make it happen. People reacted; no one responded with the love and peace that the course we were studying preached. Coming from a course where we’re being taught to speak our truths, ask for help, and live in love and peace, I was very disappointed that I was not given any support at all.
In fact, one group member even said, “There may be others in the group we don’t know about who also have physical issues.” Was that supposed to mean that I wasn’t worthy of consideration in the decisions that were made because someone else hadn’t spoken their truth? Why should I be punished for something I wasn’t even made aware of? When you look at appearances, everyone else could drive or had a ride. There were also people who lived close enough to one another who could give one another rides if that included anyone who allegedly hadn’t expressed their needs to the group. It’s the responsibility of each one of us to state what we need, and I was the only one who did. I have to say I was surprised and disappointed by the lack of recognition that one of our group members needed help, not to mention the lack of acting on it. Since it became obvious I was not supported or even valued by this group, I left. However, I believe this could have been dealt with compassionately and felt like I was deceived into thinking I had connected with people I apparently hadn’t over the 8 months we were together. The search for support continues…
So the question becomes “Why don’t people ask for help?” Well, if a group like the one I just described won’t help make it work for people with chronic pain who are limited in mobility, how can we expect your average citizen to offer the same? You need to have the courage to make yourself vulnerable by asking for help. Obviously, my vulnerability led to great disappointment. I was asking for love and was turned down in the process. It’s that fear that permeates our society. What if someone turns me down? How can I take that feeling of rejection? And if someone does offer to help, will I feel like I owe that person something?
It all comes back to the concept that “It takes a village.” Ironically, in the spirituality course I was taking, we learned about societies who helped one another as a part of their social norms. What if that was true about the United States? What if offering help wasn’t a favor at all? What if it was a part of our values, so engrained that we did it without thinking about it? What if we lived in a society where everyone’s needs were taken into consideration without it being seen as an imposition on others? What if it was done automatically because that’s who we are? For those of us asking for help, what if we didn’t feel guilty or feel like we owe someone something in return for the help we receive? The only way this could happen is if compassion was the rule and not the exception. So how do we change our society’s norms so this can be achieved?
I don’t have an easy answer, but I do think it’s important to make our needs known and to share our stories of chronic pain. This ethical value goes beyond those of us who need it because of our physical needs. It should be extended to everyone throughout the world. Perhaps, the more we offer to help others, the more they will be inspired to pay it forward without the expectation of receiving anything in return. What do you think? How do we change a society that is so engrossed in only looking out for ourselves? While I have learned the hard lesson of needing to put my needs first, I also know it’s important to offer nurturing and nourishment to everyone, whether we know them or not.
This leads to Tellio’s question regarding how we can help people around the world whom we don’t know. In case you haven’t had a chance, I suggest you check out the link he shared in the comments’ section of Part 1. Do you know how to offer this support? We have a hard enough time offering support to others in our own society, so one of my goals is to change that. And then to take this to the level of a world filled with compassion and how we can show it when we’re so far away? What have you done? Do you have any ideas? Tellio’s comment has turned this into a 3 part post, and it is certainly a concept that deserves discussion and action.