modern day rebels
took me a while…..I got there in the end…
“I laugh because I must not cry, that is all, that is all. ”
― Abraham Lincoln
Of all the famous quotes that one is rather unexpected. However, I often have said the one coping mechanism I developed to deal with chronic pain long ago was humor. It wasn’t like I didn’t have a sense of humor. It was just that I was a very sarcastic, cynical young person. I think maybe because I was aware of my limitations when I was young and I didn’t like that fact. Nor did I like feeling tired and in pain all the time or how that affected me. It did affect how I viewed the world in general and how I looked at my options in life. How I looked at those options. I took things too seriously. I didn’t let myself laugh at the simple things or act foolish for the fun of it. And I let the pain be a heavy burden on my shoulders.Which I thought about. I am a very introspective person. I think about a lot of things. Reflect on them deeply. Which is fine. But pain is one of those things that should never be reflected on for significant amounts of time. Not if you also have a melancholy type personality where thoughts begin to turn downhill, twist and turn against you with the pain. I knew I had to break that habitual thought pattern. I had read about it and it said for every negative thought you needed to replace it with three positive ones to retrain your brain. Because your brain is a broken record, it plays what it has been taught. But I wasn’t one for fluffy positive reinforcement. I don’t lie to myself very well. Fluffy positive thoughts are false in all their fluffiness. Pain is a fact. Can’t lie about that. But you can dim the truth a little. Be a little less brutally honest with yourself. I found ways to trick myself about the reality I was in. Any brutally harsh negative thing I said I would then tell myself something more… realistic. The thing about depression isn’t that it lies per sa, it is that it is always the darkest scenario of our existence, a shard of our reality that is harsh and brutal, unvarnished and cruel. But it isn’t the whole truth or even realistic. And the reason we have a hard time thinking through it is because there are some very well thought out rational points in it that are very truthful. So it is a mistake to go that way. No, you have to look for the subtle other truths that are less harsh to add in there. Pain and depression are brutal because pain is brutal. Of course it is. Of course pain without end is brutal. Of course reflecting on that is brutal. So I would say well I cannot do this or that, but I can still think… I can still go to class and do very well. I can still achieve my goals. And small things like, I may be in pain and moving slowly but it is a beautiful day and I aced that essay.
But beyond everything the most powerful thing was just letting myself be goofy. Laughing at silly things, dancing in silly ways because I felt like it and it makes people laugh, which makes me laugh. Making jokes about my illness is very common. My horrible memory. My word errors. My lack of balance. And laughter… eased my burden. I could just let myself be it seemed. And eventually it became part of who I was. Then it became part of my facade, because it was better to hide the pain with laughter than to feel it more intensely.
And I knew the day I could not cope anymore precisely. While I have always known laughter has been vital in my coping. And I have always known it has been part of my facade that hides the level of pain I feel. I knew when my level of pain began to exceed my coping when I would be laughing hard at some joke… a good hearty laugh and I would at the very same time feel deep despair and have to choke back tears. I would have to stop laughing because I knew I was close to crying. You see laughter is a powerful emotion and simmering beneath the surface of me, all the time, was the despair from all the uncontrolled pain I could not manage. That I knew intuitively I could not manage. That I was having extreme problems with and doing my damndest to pretend I could function through; more often than not, failing. But that had been the clearest sign to me, before I ever admitted it. Because it is true. I laugh because I must not cry. I laugh because it was how I lifted my spirits. How I masked the pain. How I chose to distract myself from the pain. How I chose to distract others from my pain. And laughter is a very good medicine. Very good for the brain. But I knew it was failing when other emotions wanted to burst out instead.
Good information to know!
What a wonderful article worth reading in its entirely… but I had to post this portion here. I know with chronic pain we know a great deal about suffering. About pain that leads to physical and emotional suffering. This changes us on many levels. It changes us in different ways at different times. And we think a lot about that. We reflect on those changes. Often seeing the negative. Often seeing the limits. However, the changes themselves reflect this strong core within us often. And what comes out of all this can be some powerful insights into ourselves and the world. That is not to say we are better for it. No, not better. But definitely changed. Definitely different.
What suffering does
First, suffering drags you deeper into yourself. The theologian Paul Tillich wrote that people who endure suffering are taken beneath the routines of life and find they are not who they believed themselves to be. The agony involved in, say, composing a great piece of music or the grief of having lost a loved one smashes through what they thought was the bottom floor of their personality, revealing an area below, and then it smashes through that floor revealing another area.Then, suffering gives people a more accurate sense of their own limitations, what they can control and cannot control. When people are thrust down into these deeper zones, they are forced to confront the fact they can’t determine what goes on there. Try as they might, they just can’t tell themselves to stop feeling pain, or to stop missing the one who has died or gone. And even when tranquillity begins to come back, or in those moments when grief eases, it is not clear where the relief comes from. The healing process, too, feels as though it’s part of some natural or divine process beyond individual control.People in this circumstance often have the sense that they are swept up in some larger providence. Abraham Lincoln suffered through the pain of conducting a civil war, and he came out of that with the Second Inaugural. He emerged with this sense that there were deep currents of agony and redemption sweeping not just through him but through the nation as a whole, and that he was just an instrument for transcendent tasks.
It’s at this point that people in the midst of difficulty begin to feel a call. They are not masters of the situation, but neither are they helpless. They can’t determine the course of their pain, but they can participate in responding to it. They often feel an overwhelming moral responsibility to respond well to it. People who seek this proper rejoinder to ordeal sense that they are at a deeper level than the level of happiness and individual utility. They don’t say, “Well, I’m feeling a lot of pain over the loss of my child. I should try to balance my hedonic account by going to a lot of parties and whooping it up.”
Continue reading the main storyThe right response to this sort of pain is not pleasure. It’s holiness. I don’t even mean that in a purely religious sense. It means seeing life as a moral drama, placing the hard experiences in a moral context and trying to redeem something bad by turning it into something sacred. Parents who’ve lost a child start foundations. Lincoln sacrificed himself for the Union. Prisoners in the concentration camp with psychologist Viktor Frankl rededicated themselves to living up to the hopes and expectations of their loved ones, even though those loved ones might themselves already be dead.Recovering from suffering is not like recovering from a disease. Many people don’t come out healed; they come out different. They crash through the logic of individual utility and behave paradoxically. Instead of recoiling from the sorts of loving commitments that almost always involve suffering, they throw themselves more deeply into them. Even while experiencing the worst and most lacerating consequences, some people double down on vulnerability. They hurl themselves deeper and gratefully into their art, loved ones and commitments.The suffering involved in their tasks becomes a fearful gift and very different than that equal and other gift, happiness, conventionally defined.
the best pain scale ive ever seen for chronic pain #Repost from @jennjenn129 with @repostapp #chronicpain #rsd #crps
Helpful activity scale both for talking to practitioners and gauging your own progress.
Fuck. I thought I was doing better but yeah I’m at a 40. I I’m out much longer I get a migraine or otherwise ill most times :/
This is like… too real. How am I supposed to bullshit myself now??
(no but seriously this is amazing).
[image description: A table, by jennjenn129. There is an icon of a bald girl and a tumblr reblog symbol by her username.]
100 - Fully recovered. Normal activity level with no symptoms.
90 - Normal activity level with mild symptoms at times.
80 - Near normal activity level with some symptoms.
70 - Able to work full time but with difficulty. Mostly mild symptoms.
60 - Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.
50 - Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.
40 - Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.
30 - Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.
20 - Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.
10 - Mostly bedridden. Severe symptoms.
0 - Bedridden constantly. Unable to care for self.
20 damn. I mean I am aware of this, but seeing it on a scale and realizing it in this way? Sucks.