It was my brother’s birthday a few days ago, and we exchanged our obligatory text messages. He’s 2-1/2 years older than me. He has gray hair and I don’t. I told him to stop growing gray hair. He said he would try, then asked, “How are you?” I responded, “Hanging on for dear life.”
I expected some sort of response from that, but I didn’t get anything. This isn’t the first time I’ve sent him a message like that. I send messages like that to everyone I know, hoping they will offer some sort of help, or at the very least, some sort of empathy. I continue to get nothing in return. This is a pattern that has been going on since the beginning of these latest spine issues, and a pattern that existed during the last round of major issues several years ago.
I ask a lot of people for help. Usually when I give them specific requests, they kind of say something like “Ooohhh, you need that kind of help. Ah, well, uh, OK then. Get well soon.” This is par for the course. Everyone I know has made it abundantly clear that I have to claw my way out of this hole all by myself. I’m an independent person, I’m very handy and technical. I have an impressive CV. I can do a lot of things, but I can’t fix this. I can’t figure this out on my own. I need medical help. I need procedures. I need a doctor who will treat me and who doesn’t have a 6 month wait time.
This is very typical of pain patients, and disabled people in general. People might care at the beginning, but it doesn’t take long for them to abandon you. It happened to me in the past when I first dealt with these issues, and it happened again now. Nobody cares. Not family, friends, doctors, or nurses. I just try to ignore it and move on. I don’t always have the ability to get things done myself. My focus is on getting through the next 5 minutes. If someone asks what I’m doing tomorrow, I laugh at them! I don’t know how I’m going to make it through to the end of the day! The pain is ramping up so badly at 3:00 in the afternoon. That leaves another 8 hours I have to get through somehow. How will I do that? How will I get any sleep?
One very large problem for pain patients is the isolation they experience. Much of it comes from the patients not being able to be social due to the intense pain. Having conversations becomes impossible. Text messages are tedious. Emails are difficult at best. In-person visits are straight out of the question. The rest of the isolation comes from the other side. It comes from friends and family abandoning their friend and family member so very quickly. It’s amazing how quickly people abandon me. Like within a couple weeks. So very fast.
When people take their own lives, I always hear something like, “They never said anything. I would have helped.” I call bullshit on that. People who are in need ask for help all the time. It’s just that nobody is paying any attention. Or nobody cares. Cries for help shouldn’t be laughed at – Even when the person is seemingly joking about it. If someone says they are “Hanging on for dear life”, please, help these people. Reach out to them. Offer to bring them food, or to run errands for them, or to clean their homes, or to do their laundry. Offer to help them get to the exact doctor they need. If you don’t know what doctor that is, find out. Put in some legwork so you can help these people. Find the doctor, make the appointment, drive them, sit in on the appointment and advocate for them. Get a follow up appointment for them.
Trust me, we are all in desperate need of help. For example, if you see that someone is creating a website just to get some help, please help these fucking people, for fuck’s sake. I can’t personally cry for help louder than this. I am literally crying to the whole world.
At the very least, just let them know you are there for them and you will do whatever it takes to help them. Don’t expect a reply to every message, and don’t get angry that you didn’t get a reply. When I can, I will.